Hep C journal

Every blog has its day

2007-06-16T10:03:00.000+01:00

And I think this one has just about run its course.

It has documented a very challenging chapter of my life, from being diagnosed with Hep C, through the difficult time before I changed hospitals, through my treatment and on to my eventual sustained response to treatment and killing the virus. Now, however, I am waiting for my 12 month test to see if the virus has totally gone, and it seems appropriate to finish.

This blog has been invaluable to me. It stands as a monument to an incredibly difficult time, not just healthwise, but also personally. I hope, along the way, it has had more than just therapeutic value to me, and that others have been able to share the experience.

It has also documented my involvement with Hep C awareness - the launch of the Department of Health Campaign, my attendance at several events, my education work with children, young people and professionals and the launch of the National Hepatitis C Network. In recent times, one individual has chosen to direct personal criticsm at me over this, which made me seriously reconsider whether it has all been a total waste of time and effort. Thankfully, far more others have offered their support. Without them, I may well have given up completely. As it is, I have decided to pare back some aspects of what I have been doing and to focus on developing NHCN. In a few years time, who knows, maybe we will have managed to have a major impact, and all the work, money, time and frustration will have been worthwhile. I plan to make it happen.

As well as documenting my health issues, this has documented many changes in my personal life - and none more so than getting together with Vicki, settling down into a wonderful relationship and now, the icing on the cake, the impending birth of our daughter in September. Vicki has been absolutely wonderful. It takes a very special person to go through their partner's treatment and contend with all the ups and downs that go with it. It takes and even more special person to support every step of the way. To be there at every appointment, to attend every event, to support at every presentation. Vicki is very, very special. I always said I wanted to repay the care and love she showed me during treatment. Now she is pregnant, I hope I am being half as good as she was to me, and in future, I plan to be the most wondeful husband and father to our child(ren?). I shan't match up to this - I know I can't, but I will try.

I also plan to save this entire blog, so that in future our daughter can read it, and see what this period of our lives was like - oh - and so that if anyone steals parts of it and tries to publish, I can sue them for every penny.

If anyone wants to contact me, I'll be delighted to get e-mails, and now that I am cutting back on other things, I will make a determined effort to reply to every single one.

So that's it.

Farewell.

And they all lived happily ever after.

THE END

Time flies!

2007-06-03T11:24:00.001+01:00

Sadly, time flies not only when you're having fun, but also when you have too much to do!

Since my last blog, things have been busy. Not really anything of great interest to add here, but mainly work. A busy week visiting students in schools, and sorting out more than a couple of issues - thankfully none of them serious - more to do with logistics and time management than anything. Schools, for some strange reason, seem to think that once a University tutor arrives, they are there for as long as wanted, not the hour which is more than sufficient to do the job. As a result, I frequently spend time sitting around with nothing to do, which is really irritating. On the other hand, these times are often turned to profitable use - writing my speech for the National Hep C Network Conference, planning presentations etc. Still frustrating when I have many more urgent things to do.

My last week has been spent marking students' work - dissertations, assignments etc etc. Almost all done now, but it has resulted in a couple of weeks when my three and a half day part time role has been pretty stretched - in fact, stretched to way above and beyond my paid hours. Very annoying.

I'm also waiting to see if I get any real responsibility for the next academic year. Last year, my responsibilities were removed (against my wishes), due, apparently, to my having my appendix out at an important time of year. It's odd really, I hadn't planned on having another appendix out this year! I suspect the truth is that it was far more related to my Hep C and treatment, but no-one was willing to tell me. Maybe other colleagues will be aware of this when they are ill! So, it seems that next year, I will be left with jobs which have limited interest for me in some cases. I really enjoy doing the things which are my strengths - education studies etc, but am less keen on lecturing on subjects in which I don't even have an 'O' level (like R.E. and Geography)! Never mind - maybe someone will realise at some stage. It's especially frustrating, as no-one has had any career discussions with me since I finished treatment, and the one role which I requested, was neatly taken away. Never mind - I have choices in the matter, just a case of making the right one!

One issue which has frustrated me is not having the time to get on with various aspects of work for the National Hep C Network. The newsletter is due, and neither Vicki nor I have been able to get on with it. We plan to get on with it over the next few days - Vicki can edit and sort it easily, once I have written the appropriate bits, so it's mainly down to me. We have achieved a few things however.

NHCN is now a registered charity. This is no mean feat, considering the paperwork and admin needed to get registered. It's a very cumbersome process, but has finally been achieved. This means that we can now access the funding promised to us and repay the money which had to be borrowed in order for the conference to take place.

It also means we can move forward, and a significant priority will be the production of leaflets to develop awareness, and other materials to support new patients as they are diagnosed. This sounds like a really good focus for the next trustee meeting, which will happen as soon as we have the money, and can now focus on real, practical activity, rather than all the organisation and infrastructure which has been the focus so far.

I actually think we have done rather well so far, considering the financial issues and the fact that we have achieved everything on our own, with just the support from our sponsors, Roche and Schering Plough (and, of course, the donations which were so generously given at the conference). From tiny acorns, mighty oaks grow - and who knows, if we ever get to the point of having someone who can be paid to develop the work, rather than rely on volunteers, who are trying to hold down their own jobs, we can start to really build and make a difference.

More of that in due course, no doubt.

To more domestic matters. Vicki continues to gestate magnificently. Her bump has developed significantly over the last couple of weeks, and now is more reminiscent of a waking volcano than the dormant mound which was there previously. As I write, I can glance to my left and see the rippling stomach, as baby has decided that Vicki is, basically, a zero-gravity bouncy castle. It's fun to watch, and even more fun to encourage (I tend to talk to the bump and stroke occasionally, which seems to elicit a response). It's certainly fun - and is beginning to really confuse the cats.

Whenever we have chance, we are tending to get out for a pleasant walk - just for exercise as much as anything, and to take advantage of the pleasant weather. Yesterday was Bosworth Battlefield - site of Henry VIIs victory over Richard III. Very pleasant indeed, across fields and woodland, while all the children were at home playing on their X boxes and watching Big Brother (having see it, I assume it's aimed at kids - can't imagine anyone with a mental age above 10 being remotely interested).

We plan to do more of this over the next few weeks.

So, life continues. We have now booked our holiday for mid-July (before school Holidays), and aim to have a relaxing time in Wales before coming back to start focused baby preparation - decorating, buying etc etc.

And finally ... we managed to win £100 at the pub quiz. I was asked the question ' How many witches make a coven'? Of course I know - I was at NHCN conference! It was just a case of thinking who they were and adding them up!

Take care all.

Back Again!

2007-05-16T10:11:00.000+01:00

Almost two weeks is a long break from blogging by my standards, but I just seem to have had plenty of other things to do.
Most of these things relate to work - it's one of those times of year - marking is at a premium, and needs doing, and there are quite a few lectures which needed delivering. It's always the case at the end of the academic year. In addition to this, various bits of Hep C related work have cropped up, so I am pursuing these. Having said that, I know I am rather behind with my phone calls. Plus, of course, Vicki and I have been busy preparing for our impending arrival in September.
From a personal point of view, I am still finding it difficult to feel totally well. Starting to play cricket is having a big impact. I had expected to be pretty much a passenger for the first few games, just getting used to playing again, but making very few contributions. In reality, this has not been the case. I have been bowling more than 10 overs per game and batting for extended periods of time. It's nice to know I haven't lost it completely, but is leaving me extremely tired, physically. Added to this have been several very nasty bruises which haven't helped. The worst was probably one on my ankle, which swelled and drained into my foot, leaving me with a lovely, purple foot and an ankle like a football. It's almost cleared now, and I am able to walk comfortably again after two weeks. I also have one just behind my knee on the same leg which is impressively large and colourful, and likewise restricts movements. Most irritating has been one which began between wrist and elbow, and then appeared magically right in the centre of my wrist. This one is very painful still.
I suspect these result from my generally low platelets. They are certainly the type of bruise which draw comments from others, and are far more extensive than would reasonably be expected. I'm quite looking forward to my next round of blood tests to check these out. I'm also suffering with a prior knee injury, which has been investigated over the years. It has a wonderful grating feel and sound each time I move it, and really needs checking again, if only to restart the treatment which was due to happen before my Hep C was diagnosed. I had hoped that, like my carpal tunnel syndrome, it would disappear with my Hep C. No such luck!
Having said all that, I was told at the pub quiz on Monday that I am looking 'toned' and asked if I have been working out!! I think not ... maybe just someone after a free pint!
In the world of hep C awareness, many interesting things have happened. I have heard of two new support groups being set up, a new support package for patients from one of the pharmaceutical companies, and this weekend sees the first Summer social for hep C patients taking place in Boston (UK!) - details on the NHCN website.
I also had a very useful meeting with Health and Safety Officers from Derbyshire County Council. This was principally a work centred meeting, focusing on the needs of students and the schools where they are placed for teaching experience. However, the whole issue arose as a result of a student being at risk when blood was drawn in an incident. There were many useful outcomes to this - largely sorting out rights and responsibilities - but we also discussed infectious illness. What transpired was that although the procedures for prevention of blood to blood contact were sound, procedures in the event of an incident (accidental or otherwise) were not in place. This is going to be pursued and should be helpful in ensuring monitoring and support for staff.
This also gives rise to a question about other work places, and is a good angle to follow up with Trade Unions and employers. I can see great value in the oral fluid sample tests in this context, as it means that all analysis can take place within a place of work, with appropriate support etc, rather than all the implications of going to GPs, blood tests etc. which may put some people off being tested.
The highlight of the week, however, has been our visit to the hospital for Vicki's scan. We now know the gender of the baby (hint - the mouth was moving ...), and more importantly, we know that both mother and baby are absolutely fine. There's no real reason why we should think otherwise, but like any hospital visit, there's always that niggling fear that something will be wrong. Baby is a wriggler! Wouldn't stay still for the scan, and has recently started to make very evident movements. Vicki is convinced that her bladder is being used as a football/bouncy castle. We also know which foods are being enjoyed - chocolate is a favourite, cheese, pizza, cheese and onion crisps, spicy food (Mexican) - and Kaliber alcohol free beer! Some of the movements are visible from outside, and I enjoy sitting with my hand on the bump and feeling those little wrigglings.
The scan picture is wonderful – in the 4D picture, baby is hiding shyly behind folded arms - very cute!!
Sounds as if I haven't done a lot - but in reality, it's been non-stop. I need to make various phone calls etc over the next few days, just to catch up with myself, but I know that I have a huge amount of work next week - couldn't even find half a day to visit a school when making appointments yesterday!
Oh - and almost forgot - Derby County in the play-off finals!! Fantastic - we watched in a state of nervous hysteria last night - baby even bounced around but eventually seemed to doze off with the excitement. Now just the final to win and it's Premier League next year!!
Take care all.

Small steps

2007-05-05T08:35:00.000+01:00

I've started to wonder exactly how long it will be before I am totally back to normal. I'm also wondering if my fatigue is down to post-treatment side effects, or simply lack of fitness. It's very odd.

I played cricket again last week, and this time I was a far more active participant in the game, batting for a good length of time and bowling a for a substantial spell. Problem is, it's taken until today (a week later) to feel that I'm actually ready for another game.

No surprise to have tired legs the day after, but the 'liver area' pain, stiffness in arms, shoulders and fingers - not to mention legs - has lingered through the entire week. I now that I have been walking badly, and by Thursday was suffering with lower back/hip pain which was affecting my walking. Worst of all is the fingers. Just that odd feeling of stiffness which makes me want to keep flexing them, and which makes me feel that I won't be able to hold on to small objects properly. I suppose the other problem is my knee. I have had two operations on it already, but over the last week, it just hasn't been right. It actually feels as if it might give out at any time. I think the treatment I had postponed on it during my encounter with Hep C now needs to be started again. I had hoped that it might disappear with the virus - like my carpal tunnel syndrome. So - I'll see how it goes in today's cricket match, then back to my GP.

Having said all that, this week has been fairly peaceful from a work point of view - marking, lectures and tutorials, but not going over my paid hours as has happened so often before.

One addition was my presentation to trainee radiographers about working with patients with infectious illnesses. This was a really good chance to get involved with the education of medical professionals, and, from the feedback I received, seemed to go very well. Hopefully, that's a good starting point to develop this aspect of awareness. On the whole, radiographers receive a very good press from peple who have encountered them during their battle with Hep C, so it was good to give them positive feedback, and to fill in knowledge about Hep C in general. I was a little surprised at how limited their knowledge actually is - maybe they were just being modest - I actually wished I had done more about Hep C and its natural history than focusing so directly on their professional engagement with infectious illness. However, providing them with links to carry out their own research should result in wider knowledge, if they wish to pursue it.

I suppose the greatest surprise was getting home and simply falling asleep. It was probably the clearest illustration yet of how this post-treatment fatigue is still affecting me.

To be honest, I've almost considered calling my nurse (who thinks she's got rid of me apart from the odd monitoring visit) and talking it through with her. My main concern is an odd 'fluttering feeling' - almost a twitch under the skin - in the region of my liver, and allied to this, a tic which presents itself quite frequently in the left hand side of my face. All of these probably mean nothing. I am 6 months clear of Hep C, just needing time to recover. It's not pleasant though, and really highlights the need for study into post-treatment effects and what support is actually needed. Yet one more badly researched aspect of Hep C - though I know the Hep C Trust are looking into it. Problem is, the Department of Health only seem to take into account the research which they want to look at.

Not a great week for me, healthwise!

Vicki has had the opposite sort of week. I have wondered if my little flutterings are linked to the regular movements of our baby, which have progressed from being very subtle and barely noticeable (mistaken for indigestion or trapped wind) into quite distint events, which result in Vicki stroking and carressing her ever-expanding bump in a typically maternal manner. I have even felt the movements myself.

Yesterday, Vicki went to her first 'aqua-natal' class at the swimming baths. When I met her in the bar afterwards, she commented that she felt rather a fraud as we sat among a couple of dozen vastly pregnant women, who looked as if they might be about to give birth en masse at any second. Being male in such places is hardly comfortable, and the other couple of expectant fathers who were there looked just as out of place in this massively maternal and feminine environment as I felt. Conversation, of course, related to all of those topics which make the process of childbirth so dignified. I am determined to be as involved as possible, but talk of caesareans, sore nipples, stitches and various bodily discharges are something I find tricky to relate to. Oh well ... I can but try. No doubt as these classe become a regular event, I shall be able to develop my skills in debating the benefits of sleep bras, nipple cream and plastic mattress protectors. Mmmm ... sexy ...

So - another week has passed and things continue to tick over. Next week, I have a meeting with the Health and Safety Officer with Derbyshire County Council, which promises to be fascinating, and Vick is starting up her voluntery work with our local women's project. Should be interesting.

Take care.

At last .. playing cricket again

2007-04-27T08:30:00.000+01:00

Last Saturday, I played cricket again for the first time in two years.

Cricket is one of my great loves, and I have missed it so much.

It took about 3 days to recover - and I only bowled 3 overs. Having said that, I was satisfied. I didn't play well, but it seems as though the basic techniques have been remembered, and over the next few weeks, I anticipate improving further. It's really a case of practice and building up fitness. No doubt it will all come back to me.

I suppose it's one more sign that after Hep C, life is returning to normal again, and just the feeling of stiff limbs, sweat and rediscovering muscles I had forgotten is good. Tomorrow is my first league game, so is important, and will no doubt prove even more tiring. It's just good to hear ball on bat and feel the leather in my hand - at one stage I had wondered if my career was completely over.

Work has also picked up. I have had a very busy couple of weeks, with lecturing, marking, school visits and meetings. These still leave me needing my early evening sleep, accompanied by an early night, but, once again, it's a sign that 9 months after treatment things are normalizing.

Some people seem to believe that once treatment stops and the all clear is sounded, it's back to normal. Simply not true. It was after Christmas that I began to feel more like my old self again - tricky to recognise at first, as perceptions of 'normality' are influenced by what is happening and the realization that things are getting better is slow to dawn - well, until the limits are pushed anyway.

I have also been picking up the pieces from the NHCN conference - making contacts, writing up reports, considering new ways forward and still paying out expenses. I'm far from convinced that we will be able to make conference free for everyone next year. We will try, but it depends on sponsorship. I can think of few other organisations who are as liberal with expenses as we have been - probably just the criteria for subsidy we need to really focus on.

On Tuesday we travelled to Warrington to meet a representative from Altrix, who are responsible for producing and testing the oral fluid test for Hep C. This was fascinating. The process is so simple. Place the collection paddle between cheek and gum for 2 minutes, remove it, place in a vial, label correctly and send to the lab. How much more simple than needing to be in a clinical setting and go through the discomfort and natural aversion to a needle in the arm. Of course - no risk of needlestick injury either.

Oh - and at present, test results back in 4 days. How does that compare with NHS time lapses? It also seems quite reasonably priced - £24 for the testing kit and all the lab work. I have no idea how much NHS tests cost - I suspect the NHS don't either, as lab work is probably not broken down on a per unit basis. So it's cheap, effective and reliable - and patient friendly. Just imagine, families of concerned patients tested in their own home with results inside a week - or going out onto the streets and testing members of the public.

Of course, there are a couple of issues - the sample collector must be trained, there must be a clear care pathway as follow up for patients and pre-test discussion must take place. However, all these can be facilitated with a bit of training, an active support group and co-operation from the PCT or a specialist nurse. I plan to discuss training with the company so that support group leaders and others can be trained to test - maybe even testing events taking place in cities or at music festivals. A possibility for World Hepatitis Awareness Day? Well - last year the theme was getting tested - this year, rather than talk about it, let's actually do it!

Back to reality, and today we are shopping for maternity clothes. My enthusiasm knows no bounds. Vicki has now reached that point where everything feels tight, some things are just plain uncomfortable and others are already in storage till after the birth. One might say she is blossoming. So - only answer - a trip to the shops. It will be great for Vicki to have these clothes - she will be able to feel comfortable again, and actually have a better choice of what to wear. I just have an aversion to spending money, especially when I know that these rather cynical companies add a special premium due to pregnancy. Rather like weddings and funerals, these events become a chance to exploit rather than a standard profit. Never mind. Got to be done.

For now, take care all.

Celebrating Conference

2007-04-17T07:55:00.000+01:00

Yesterday was rather an anti-climax after the conference weekend. Vicki was at home resting, and getting bored; I was at work, lecturing. In the evening we went to the pub quiz and did fairly badly by normal standards. Back down to earth with something of a bump after a wonderful weekend at the NHCN Conference.

As Vicki and I were very involved in the organisation, I hope that it's ok if I present a rather personal view of the event - it's impossible to be objective when you're so involved - others have already started to comment (see the hep C forum), and I'm sure their views will be far more valid than mine would be.

However - here goes.

I thoroughly enjoyed the weekend - all the stresses of planning and organisation, those financial crises and the fact we almost had to cancel a fortnight ago all worthwhile. It is just so good to be with peple who understand, who can relate, and who, for the most part, are incredibly nice people.

The whole thing began on Friday - meeting early arrivals at the hotel, collecting from station and airport and generally being around. We eventually found food. Farcical that there are so many places to eat in that area, but it was hard work to find one where we could get a quick meal of decent quality. We did eventually, which is what counts.

Friday was probably the most stressed time of all - wondering what would go wrong. Would the hotel have too few bookings? Would people get lost? Would someone be stranded at the airport? And what would happen tomorrow? Worst of all, what if no-one turned up and our speakers arrived to find half a dozen people and the catering staff in a room able to hold 300?

None of these things happened. People arrived, speakers appeared and although we had to fiddle about with the rooming, there were no significant problems. A couple didn't make it due to ill health - but that was to be expected. What was extraordinary was that so many people, many of whom are distinctly unwell either from treatment or their health conditions, made massive efforts to be there on a weekend when many may have preferred to relax in their gardens and bask in the sun.

It was wonderful. My sole regret was that I had too little time to network, as I was involved with the general organisation - I felt that I had to keep cutting short conversations and dashing off - I hope no-one thought I was being rude. I also hope I can spend more time with them in a more relaxed setting in the future.

The speakers were interesting and informative. I've had little feedback on my speech, though it seemed to go well. Vicki told me off over one slightly crude aside. I have to be honest, I was able to take in very little of the day - we were both stressed! I think one part of my speech may have been unclear - to clarify - Hep C cannot be sexually transmitted - cannot, is not, will not be transmitted by sex, unless there is also blood to blood contact. A sex crazed sado-masochistic vampire may be at low risk, but no-one else. Sorry if that was confusing.

By the evening, our concerns were alleviating, and the meal was magnificent. Lovely food, great service. The one dark cloud was that some idiot told the bar staff that they needed to steam and sterilize all the glasses, as someone might catch Hep C from them. How utterly stupid. Anyone knows that the only transmission method is blood to blood. The staff supervisor handled it extremely well, but one of the staff was very upset and tearful, and I had a chat with her to calm her down. Trying to dispel prejudice will become impossible if people within our own group insist on doing such stupid things. Let's hope that this doesn't result in whispering to other staff at the venue, to their friends and to the wider public. It could set all the good work we have done to dispel prejudice back for years.

Workshops on Sunday eventually began - I think many had found day 1 very tiring - so a flexible format was essential, and I think most people found this more personal side to the conference really informative after the formal speeches of the previous day.

Our closing speaker demonstrated huge courage in his presentation and in discussing his personal hep c experiences.

And then it was over.

Both Vicki and I had a fantastic time. Once again meeting so many friends, old and new, and demonstrating that through adversity comes unity, and through unity comes strength. I feel positively empowered by the whole event, and hope others feel the same.

And now to start building. In my view, the event was a huge achievement for the NHCN Trustees, and all of their efforts merit the highest praise. I feel that we are now in a position to become major stakeholders in the campaign for fair and proper treatment of people with Hep C, and the wider public, and that the event will prove to be a launch pad for working alongside other stakeholders to make a real difference.

Over all. it was great!

So now, back to normality - and job one after getting home from conference was to go via the DIY shop to collect some heavy duty bolts to reattach the radiator to the bedroom wall - it fell off as we left home on Sunday morning.

There's now no question in my mind that NHCN has stepped into the arena - and we shall be building on this. Normality won't last long! We will have a brief rest, than back to renew our work, invigorated and ready to move forward.

Eating my words

2007-04-06T07:01:00.000+01:00

Having moaned long and hard about lack of consultation with the Department of Health, it's great to report that I enjoyed a really valuable and informative meeting with the FaceIt project director yesterday. I have to say, I am really impressed with the way the awareness campaign is being refocused - it demonstrates something which I always consider to be a high quality skill - the ability to reflect, evaluate and develop a plan of action based on existing information. It's a pity I can't disclose a huge amount about this just yet - suffice to say, I was privy to some new materials which are of excellent quality - for example, the 'quick reference guide for GPs' new leaflets and other media which would seem to demonstrate that the whole campaign is stepping up a gear - particularly in the refocusing to specific community groups. It really demonstrates a key issue - namely that trying to produce information about Hep C which is likely to have impact on all the affected groups is incredibly difficult, but by concentrating on the needs of certain people makes the task a great deal more relevant.

I'm really delighted to have had this meeting, because it reinforces my strongly held belief that the only way to move Hep C support and awareness forward is by ensuring that all the organisations involved actively work together. NHCN conference should be a clear demonstration of this. The speakers we have represent several of the key players - the Hep C Trust, the UK Hep C Resource Centre, the British Liver Trust, specialist nurses and consultants. We are also to be joined on the Sunday by a representative of the FaceIt campaign. This ought to make the conference a real forum for unity, and give the chance to share thoughts and ensure that the resources available are used to maximum effect.

Of course, in terms of financial resources, NHCN is bottom of the pile - however, I think we have a huge contribution to make in terms of people, skills and knowledge which ensures we can be a real part of future awareness, and have a major involvement in some of the exciting future events which were discussed yesterday.

I think the other key point stemming from yesterday's meeting was the open and frank discussion which took place. Criticism was given and received honestly and openly, and this has to be good. it wasn't really a 'clear the air' session as that implies some underlying conflict - more a professional discussion in which views were shared and exchanged - at times challenged and at others accepted - but which resulted in a positive outcome. I speak for myself, of course, and hope the feeling is mutual.

Anyway - that has been a real highlight.

Other than that, it's been conference, conference, conference - and I think the major logistics are all sorted. Anyone who wants to come and stay or have a meal is simply too late - but any visitors on the day will be more than welcome. Having expected about 65 people until last week, I'm now expecting in excess of 80 - and probably closer to 100. we have had to change rooms for the meal, and now have fully booked this one - so that's 60 - plus those who are not dining with us. Conference is also being advertised in the Derby Evening Telegraph today. I did a brief telephone interview with a reporter, and a photographer came to see us yesterday, so hopefully some local people will appear as well. With any luck there will be more press coverage next week - I certainly sent out enough copies of the press release!

All of these events, however, pale into insignificance when put alongside the big event for the week - Vicki's first scan. I hope those of you who have had children will excuse me if I have the first time parent's zeal for those rather blotchy images which appear, but looking at them, identifying our baby's head, spine, stomach, arms and legs is an unbelievable experience - not so much as watching the monitor at the hospital, seeing a heartbeat, seeing arms moving and watching baby wriggle and do headstands. That was truly stunning. Main thing is, no problems - all looks well, and it's back for the next scan in 5 weeks.

I think that's about it. All is well, Easter is here, weather is lovely, lawn needs mowing. Life is pretty good!

Take care all.

Countdown to Conference

2007-03-27T08:49:00.000+01:00

Just over 2 weeks to go, and the real panic starts now!

I am getting regular phone calls asking about bookings - in fact, 6 new ones this morning - and everything seems to be on target. Now I panic about my organisational abilities - in fact, I panic about how to run a conference without money. Hopefully, the money will arrive in time. If not, it will still be paid for and just have to be recouped when the money does appear.

Whatever - we're nearly there. To be honest, I don't know if I'm running around like a headless chicken or a blue-arsed fly - and on top of it all, I am fitting in a hectic work schedule, which at times means things need to be put to one side until I actually get round to sorting them out.

Regardless, speakers are booked, the timetable for the 2 days is sorted and I have even started to write my speech - on the back of a feedback sheet from a lecture which needed to be hastily reprinted.

As ever, timing were a little tricky - I have tried to balance formal elements with times to network and socialise - hence coffee breaks are fairly lengthy and speeches quite short (good news for those making speeches and for those listening), but whatever happens it should be great - I just hope allowances are made for my naivety with these things and the fact that it may seem rather last minute, as funds haven't arrived yet!

Oddly, the more I think about it, the more I am pleased about the nature of conference. It will be very focused on patients and supporters, with plenty of information for those offering support and great chances for individual patients to develop their background knowledge. This will be especially true of the workshops, which will be genuine chances for sharing and developing knowledge, while the speeches will be focusing more on passing information. A good balance - and with the meal on Saturday, a great time to meet others.

While planning my speech, I have been reflecting on my involvement with the awareness side of things - starting with my phone call to the FaCeIt campaign, and meeting other patients for the first time when I went to have my photograph taken. This developed into the awareness events, and meeting so many people at the first official event in London in March 2005. What is really gratifying is that so many people who I met at these early stages will be present at the Conference - as will so many who have since become active. It's impossible to question the commitment and passion of these people and the fact that conference will include so many who have changed lives as a result of their contributions. It's a hugely humbling experience.

Having said all that, I will just be delighted when it's over and there have been no major mistakes or disasters.

It's been a huge learning curve for me - something else to add to my CV - and I know that next year will be very different - I will start organising funding immediately after the event, I think!

Anyway - back to it - and I can't wait to see you all there.

Feeling positive about Hep C

2007-03-17T07:23:00.000Z

Over the last week, I have started to feel very positive about things. Firstly, on a personal level, I have completed a couple of very busy working weeks - not only a lot of face to face lecturing and direct work with students, but also a significant amount of marking.

I know that until recently (probably into January), this would have left me utterly shattered, unable to cope and missing important deadlines - probably needing at least one day off for recovery. In fact, I'm now coping. Yes, I get tired, and yes, I still sleep for a couple of hours in the evening at home, but I am getting up and feeling able to keep going now. Thinking back, although I told work I was having two days off when I had my dental abcess, at a time when I didn't actually have any commitments, I have missed no time from work, have met every deadline and am starting to feel relaxed and confident in what I'm doing. This is a huge change to my time on treatment and the first 6 months after. I really feel up to a full time workload and am confident in my ability to perform as well as I expect.

More importantly (as I always believe that family comes first), I'm looking towards gardening, preparing baby's bedroom and doing bits and pieces of DIY in preparation for our impending addition in September - I'm also trying to make certain that I am offering Vicki all the support she offered me through my treatment as she continues down the road with her pregnancy. Currently, she is still getting tired and occasionally feels a bit nauseous, but we are now 13 weeks in and expecting things to improve. Our one disappointment is that she still has no appointment for the first scan - she called the hospital yesterday and was told this will be in a couple of weeks, as they are currently short-staffed. This seems to be something of a mantra for the NHS now.

As well as my positivity over my own health, there are other positive aspects which have pleased me. I received a letter from the Cheif Executive of Nottingham Hospitals' Trust this week. Although the nurse who is leaving has only just handed in her notice, the letter clearly states 'it would be our intention to seek to recruit to this vacancy', and that the Trust are 'committed to ensuring this service both continues and develops'. Obviously, I will keep an eye on this and ensure that people are as good as their word, but it would seem that current provision will, at least, be maintained. I'm delighted. I remember well how I had to wait for treatment until my own specialist nurse returned from maternity leave, and would hate to think that treatment would have to be delayed for others simply because staffing was reduced. I couldn't help wondering if the hospital would consider having a patient representative on the interview panel, at least in an advisory capacity - this sort of practice is becoming more common, and has been in place in education for some time - it would be good to see.

As well as this, I noticed new professional guidance on testing for Hep C on the NHS website. The most pleasing factor in this is that testing is recommended for people who have 'unexplained abnormal liver function tests (e.g. elevated ALT), or unexplained jaundice'. Had this been the case 15 years ago, I would probably have been diagnosed back then. Sadly this is not replicated in the 'Essential Guidance', which continues to trot out the old liturgy of testing on the basis of risk factors. It's so disappointing when there is progress, but this is not consistent. I am also disappointed in the new poster which has been produced - again, all about risk factors, nothing about symptoms, physical or clinical. However - a move in the right direction is a start and can be built on. No doubt reference will be made to this at NHCN Conference. The documents mentioned also adopt the bizarre double standard over sexual transmission - the Essential Guidance does not recommend testing for people with multiple sexual partners, while the Quick Reference Guide and poster recommend testing for sexual partners of those with Hep C. I think the UK is probably the only country still under the illusion that sexual transmission exists - it isn't acknowledged in Australia or the US, although blood to blood contact during sex is referred to. Surely it would be more appropriate to refer 'sexual practices in which there may be blood to blood contact', or 'living in a close relationship with someone with Hep C where blood to blood contact may have occurred'. Plus, of course, the UK's bizarre unilateral approach in not accepting intransal transmission as a reality. Few would actually be so willing to ignore research into this.

Anyway - still a long way to go, but recommendation for testing based on symptoms is a start.

As well as these positives, I also feel good abotu the response to NHCN Conference - bookings are coming in, and it seems likely that we will have a good audience to support the high quality speakers who we have engaged. It's fair to say that no-one will leave without feeling better informed, having made excellent contacts, feeling positive and having had a good time.

And so, back home - I mentioned previously about Vicki's pregnancy - we now have a distinct bump - not too obvious to some, but to us, clear and evident. We had spent a while noting general changes, but earlier this week, we reached the point where these changes were no longer a tentative suspicion, but a reality, which we spent quite a while stroking and generally being affectionate towards. I need to find a name for this bump of course. I was quickly vetoed from calling Vicki 'bumpy'. We are also discussing babies' names - oddly, we have decided on a boy's name, but girls are proving more elusive - maybe it's an omen.

Take care all.

Post-treatment and pregnancy

2007-03-10T07:00:00.000Z

The last week has focused very much on work and Conference planning.

Although I'm only technically suppose to be working part time, every day this week (and part of last weekend) has been a working day. It's one of those busy times of year, with marking, tutorials and lectures - in fact, these are without doubt the busiest couple of weeks so far, and actually finding spare time has been a challenge. Alongside this, while Vicki's nausea seems to be easing as we reach the 3 month point of her pregnancy, she is still very,very tired - and NHCN Conference arrangements are well under way - only been advertised for a couple of days, and 40 bookings already. I'm delighted by this, and the knowledge that there will be more to come. We have been fortunate enough to get a really good group of speakers, presenting on a range of hugely relevant and important subjects. It's hard to imagine that anyone, whether patient, support worker or professional will leave without learning a huge amount and being inspired. If you haven't booked yet, follow the link to the NHCN website on the right for a booking form.

I also hope that Conference will provide a platform for people to air their views about Hep C provision and the general approach taken towards Hep C. Patients are a group who have been massively and blatantly excluded from such discussions, and it's high time something happened to rectify this. I know at times it makes difficult listening for those involved, but the role of 'critical friend' is one which should be valued and used effectively, rather than over-looked.

This is the sort of time when I start to rcognise the toll that treatment has taken. Every night, I fall asleep in front of the TV at about 6.30 (later on Thursday, as I didn't finish work until 8pm), and every night my eyes simply don't stay open after 10.00. Each day, I have woken up feeling increasingly tired, and rather light-headed. It's not pleasant at all. Thankfully, the weekend is now here, and although I have piles of marking sitting next to me as I speak, they will not be looked at over this weekend. This fatigue is also physical, with back pain, muscle aches and general lethargy setting in. Considering I used to work a full week, play two games of cricket at the weekend and still wake up ready to do the whole lot all over again the following week - not to mention a night out after cricket on Saturday - it's a real reflection of the toll treatment has taken - or maybe that I need to allow more recuperation and build myself up more steadily.

One side issue to all this is that the general tiredness has resulted in me eating plenty of 'energy' foods - high sugar etc. However, I now have no medication to stop these turning into fat - so my weight has rather shot up. Exacerbating this issue is the fact that there is an evident fault with our washing machine, which just keeps shrinking my trousers. To accomodate this, I've bought trousers with larger waists, so that the shrinkage will leave them fitting comfortably (think what you like - I know I am turning into a short, fat bloke again). I'm also on a diet. Not a formal, rigid regime, just cutting out all the rubbish and eating far more fruit to replace lost energy. It's scary how this has crept up on me and gone further than I wanted - but a little self-discipline should rein in my ever expanding gut. This isn't helped by the fact that Vicki has started craving Cadbury's Cream Eggs - and salt and vinegar crisps.

The best thing this week is that I have my own car back, so the shed which I had been driving as a courtesy car has been returned to where it belongs - the bottom of someone's garden, with a lawn mower inside. It's lovely to drive a nice, smooth, familiar car.

My dental problems have also subsided, with just the need to get used to a large gap in my teeth. I am still less than happy about this - basically, the removed tooth had had several fillings over time, and in December last year, I was told that the work had been completed. Of course, it was at just this time that my old dentist decided to only take patients registered with the Denplan (AXA) insurance scheme, and it's my opinion that they basically did the bare minimum for patients until they were being paid under that scheme, which is very expensive - even for people without Hep C. I had decided to change dentist, with a 6 month window when my teeth should, in theory, have been fine. Sadly, as an earlier blog records this was not the case. It's a shameful state for a country which is supposed to pride itself on the quality of dental work, and even worse, as NHS Direct was unable to find me a dentist and directed me to the wrong place. In fact, I only got treatment quickly as a result of my mother's intervention when she called her own dentist and used contacts to get me in. In an emergency, and when advised that I needed treatment within an hour, this simply shouldn't happen.

Something else which I have done recently is to redesign this blog - I have added key links to major Hep C information sites at the top right hand side, and have redesigned the links to earlier parts of the blog so that visitors can find the sections they want more easily - basically, diagnosis to treatment, the treatment journey and post-treatment. Hopefully this will help those looking for information about specific points in the hep C care pathway to target their reading, rather than wading through a lot of stuff which may not be relevant to them. As a result of this, I lost my hit counter somehow, so need to 12,500 to each reading on the new one. Never mind.

So - my thoughts return to Conference, as I prepare to send another batch of e-mails and get underway with more booking. To be honest, I can't wait. It's a really exciting time, and an honour to be part of it. Such events provide great opportunities, and I have a feeling that this may be the start of something big.

Ups and downs!

2007-02-28T17:46:00.000Z

It's been a very odd sort of week. It began on Monday when we performed abysmally in the pub quiz. As we left, someone pulled out of a side road, right in front of us, taking with them our indicator, headlamp and a bit of bumper. No real damage, but an undriveable car (well ... legally anyway) - and hassle to sort out insurance etc.

It then took two days to get a courtesy car - a Mercedes A Class, with all the charm and driveability of a garden shed. It's uncomfortable, slow, unresponsive and generally much worse to drive than my car. Basically, I shan't buy one ... ever.

Come the end of the week, however, we were ready to spend a few days away to celebrate my birthday. We took the shed up to York where we had a fabulous couple of days, eating marvellous food, stopping in a wonderfully comfortable room and visiting some of the magnificent sites of the city.

However, even this was marred. My toothache began on Thursday, and got steadily worse. By Sunday, the pain was severe and I had missed 2 nights sleep and just about stopped eating altogether. By Monday, the agony was too much and an emergency dentist had to be found. I had a large, 3 rooted molar removed, which was about 6 inches long and 7 inches wide - it also had large abcesses on two of the roots, which had led to infections in my cheek, sinuses and eye. The wonders of antobiotics are currently tending to these, and eating through a straw helps.

Thankfully, Vicki was with me the whole time - enjoying every second of it. As I pointed out to her, if I've got to sit there while she has a baby, she can at least watch me have a tooth out!

Which reminds me ... I haven't mentioned it here just yet, but today seems like a good time. We are expecting a baby. We found out a couple of weeks ago that Vicki is pregnant, and today we went for our first midwife appointment. Even better, last night I got to park in the 'Expectant Mums' spaces at Asda!!

We are, of course, absolutely delighted. It had always been in our plans, but to happen just six months after treatment - bizarrely, we found out on the day I went for my 6 month SVR - is remarkable luck. It is a first for both of us, and I'm just delighted that Hep C treatment has clearly done no harm to my er ... gentlemanly appendages ... If anything, precisely the opposite!

So, our baby is due towards the end of September.

I have sent my time recently surrounded by magazines about pregnancy, books about maternity, eating my lunch while women give birth in a variety of creative fashions on 'Living TV'. Oddly, they all seem to be very painful and someone always seems to think that their way's best.

Also, of course, we've had the nausea, fatigue, irritability etc. Just like Hep C treatment - not to mention Vicki's distress at rapid hair growth and a couple of spots!! I am also less than convinced that breakfast in bed is the perfect cure for morning sickness. However, the nesting instinct is working - I have enjoyed several home-baked cakes and flapjacks. Luxury!

I am also having a sympathetic pregnancy. Well .. I'm tired, irritable and finding that the waistband of my trousers is a little tighter than previously. It could be sympathetic pregnancy, or perhaps I'm just an grumpy old fat git.

As a result of all this action, I have been pretty much incommunicado over the last few days, and have done very little towards advancing the cause of hep c awareness. I intend to have a few more restful days while I finish the antibiotics, then get back on to it.

So for now, take care all.

Getting involved!

2007-02-18T08:17:00.000Z

The National Hep C Network website is up and running, and feedback so far has been very positive.

It's a tricky balance between having plenty of information available and not duplicating what everyone else has on their website - plus making sure that people are directed towards good quality and reliable sources of information. I hope we've got the balance about right and that in turn, those agencies to whom we have made referrals will put links to our sites on their own pages.

Where I think we benefit, as an organisation, is that we have links across the country. Having mapped all our contacts, we have general coverage across the UK - with the exception of Northern Ireland, and this has to be one of our great strengths.

The tendency to focus everything on London has once again been highlighted this week - this time through the response to gun crime. My area, Nottingham, has been considered the gun-crime capital of theUK for some time now, and there has been widespread criticism of the police from Government level - however, 3 shootings in London and extra police are out on the streets, ministers and politicians are considering it a serious issue and there are talks about legal changes. About time. Those of us who live outside the capital have felt like second-class citizens for some time in most aspects of Government - it's sickening!

Anyway, back to Hep C. Anita Roddick has this week informed the press that she has Hep C. Congratulations to her for her courage. Let's hope other high profile people follow her initiative. Not only that, she has been very outspoken in her criticism of national policy - her comments echo those of so many of us who have worked in the awareness field, and I feel that now is the time to stop appeasing and trying to effect change through diplomacy, but to accept that confrontation and harsh criticism may be more effective. To put it another way, the most effective way to deal with politicians is to hit where it hurts - by losing them votes - or by encouraging them to act to keep votes. An interesting foot note to this is that I was invited, in my capacity as Chair of the National Hep C Network, to represent patients in discussions about developing awareness. So far, no reference whatsoever has been made to this role, and my views have not been sought at all - though my opinions are well known. It makes me feel like a very second class patient!

And throughout this week, I have been extremely busy - work, of course, has been a major time consumer - meetings, tutorials, marking, preparation etc etc. And sandwiched amongst all this, phone calls to patients, friends, consultants, nurses, MPs, pharmaceutical companies etc - not to mention the e-mailing on a daily basis.

Maybe most important have been two meetings - firstly with Addaction UK, where we are setting up training for a group of professionals, which will be disseminated around the UK during the course of the year. The second meeting was at the University, with the health faculty. It is the second meeting of a group designed to bring together services and service users and the training establishments, with the aim of bringing real life, first hand patient experience into health professional training. This has enormous potential for the future, and seems to be just at the point of taking off.

Alongside all this have been the post-treatment side effects which have become an ongoing part of life. I simply fall asleep! I tend to do a couple of hours work, or keep going as long as necessary, and then simply cannot stay awake. I wake up an hour or two later unrefreshed, irritable, light-headed and utterly shattered. My knees are painful, I keep getting itchy spots, and right now have a rather sore swelling on my left eyelid! Still - never mind - better than carrying around the virus. Vicki blames all this on me over-doing things. Being female, she's almost certainly right. Being male, of course, I don't listen!

Take care all

NHCN Website

2007-02-14T13:34:00.000Z

After a huge amount of work by our website manager, the NHCN website is now up and running!!

We will continue to develop the site as time passes, and any thoughts or ideas are more than welcome.

For now - enjoy!

http://nhcn.info/nhcn_index

Getting worse?

2007-02-11T09:02:00.000Z

I have become rather concerned over provision for Hep C patients - and those carrying the virus unknowingly - this week.

Having voiced concerns over depletion of provision at my local hospital, there have been news reports about health service cuts in many other areas. I have previously bemoaned the lack of targets or ring-fenced funding for Hep C and feel that this makes it an easy target for unscrupulous health care administrators.

My concerns are not eased by the lack of response to my communications about this. I have now sent seven letters to those involved in the Nottingham Hospitals Trust requesting clarification of their future proposals. I have received no replies.

In fact, I recently sent over 30 letters to MPs, Primary Care Trusts and Strategic Health Authorities requesting information about their awareness of Hep C provision. I have had two replies - from my constituency MP, Liz Blackman, and from Bob Laxton, MP. It is a great shame that the PCTs and SHAs in particular are so willing to ignore patient groups. Oddly, if they were to work with us, we could help them to improve provision - and use the funding available to develop their resources. This isn't a difficult concept. The notion that patients given support in non-clinical settings will be more independent and more positive about treatment is fairly obvious - this should then reduce pressure on hospitals to offer support other than the medical needs.

The real irony is that, in reducing provision, the number of people diagnosed and treated will fall, extent of liver disease will increase, making treatment less likely to succeed anyway, and demand for massively expensive liver transplants will increase. Oh - and more people walking around with Hep C means that unwitting transmission is more possible, hence failing to reduce the instance of Hep C. Of course, the Government's Action Plan was designed to avoid this situation. Its failure is manifest - not in the increase in awareness, but because there has been no incentive for health providers to become involved with it. Basically, our health service administrators - you know the ones - those who sit in offices and never meet a real patient - couldn't care less - and the way information is presented doesn't help this state of affairs. Actually, maybe to say they don't care isn't fair - I suspect they know nothing about Hep C, and simply view it as a 'junkie' disease, and are happy to wallow in their ignorance, rather than taking a very real look at the facts and figures - and people - concerned.

Of course, the Department of Health could do something to force the situation - but there is no evidence of this happening. I haven't even seen an evaluation of the Action Plan from DoH sources - just the extremely damning report from the All Party Parliamentary Group on Hepatology - which appears not to have been acted upon.

Anyway - next phase - I shall be circulating my questions about the Nottingham Hospitals to local MPs, making the lack of response from those directly involved absolutely clear - along with my views on the efficacy, or lack of it, of the Government's 'patient involvement' initiative.

I have also spent time contacting potential speakers for the NHCN conference in April. Good news is, we're almost there! Potentially, there should be a very good group of speakers addressing a range of Hep C issues, and high quality workshops. By next week, all should be sorted and advertised - watch this space!!

More generally, Vicki has commented how tired I've been - dropping asleep constantly (usually during good TV programmes, which is annoying, as they are so rare). I am just too tired. Work is the main factor in this - I have been in different schools every day this week. We have also had inspectors at work - as have several of the schools I have visited. Inspection is a time consuming, stressful process which is costly and detracts from the main client group of any organisation. Our work inspection has had little impact on me, as I still don't feel part of the team after being ill for so long, but the chaos and disruption caused are out of all proportion to the value of the outcomes. I have little respect for inspectors or their judgements.

So that just about sums up my week.

Take care all

6 months later ...

2007-02-05T12:59:00.000Z

So it's now six months since I finished my treatment. It's amazing how things have changed. I'm more human, feel as if I'm connecting to reality again, and despite all the joint pains, falling asleep far too reglarly and easily and the occasional bout of abdominal pain, it's obvious that I am rejoining the world of the living.

I got the results of my 6 month check during the week - still all clear, thankfully and no problems showing up. It's a huge relief, even though expected after my 3 month check was clear. My next round of blood tests should be in July, although I have an ultrasound scan in a couple of weeks. No worries now though.

Apart from work, which has occupied much of my time, I have been sorting out a presentation about Hep C ready to present to groups of professionals. It's for full day training courses, so is very substantial - about 60 powerpoint slides!

While planning this, I had the TV on one day, and was amazed to hear the words 'Hepatitis C' mentioned in the programme 'Doctors' on BBC1. Obviously, my ears pricked up, and I was able to hear one of the worst presentations of the Hep C issue I have ever heard. To begin with, the patient was set for a liver transplant - very rare in Hep C patients who have been diagnosed - and secondly came the tirade from another character about the patient being a former addict, and it being his own fault that he had got it. All this as the actor portraying a doctor looked on and shrugged, apparently condoning what was said. What an abysmal attitude from the BBC - high time they researched properly and found advisers who know what they're talking about. My complaint is in, and a reply requested - still waiting! Today I watched the clip again to see if I was over-reacting. If anything, it looked even worse second time round, and I look forward to showing it as part of a presentation to illustrate the ignorance and prejudice with which people have to cope. What makes it worse is that the BBC were the perpetrators. With a national campaign to raise awareness and World Hepatitis Awareness day having focused on the slogan 'Get Tested', the BBC has really served to undermine everything which has been achieved. What a disgrace.

I've also been trying to finalise arrangements for the National Hep C Network Conference. Speakers and workshops are almost all sorted, and information should be available soon - hopefully this week. The event looks really promising, and should be incredibly valuable - only thing is, there's no money yet to start sorting out some aspects. Not too big a problem, but an expensive irritant!

Other than that, it's been mainly work - visiting schools, attending meetings etc etc. I have an interesting meeting this week to discuss developing a module of a Master's degree about health education. This is, of course, one of those areas of education which people see as very important, but which tends to be led largely by Government policy - maybe because it's only when something becomes a priority that funding is available. One thing I have noticed is how little collaboration there seems to be between the Dept of Health and the Dept for Education - especially in funding terms - and yet, it's children who can be most influenced about their future decisions, and who need information to guide their decisions. I have contested that much of health education is too little too late - focusing on the point at which decisions are taken, rather than ensuring that those decisions are well informed. It's just a personal view.

Anyway, enough for now - take care all

Bad timing!

2007-01-27T06:54:00.000Z

Having been with the trustees of the National Hepatitis C Network last weekend, it is absolutely typical that several matters should arise over the next few days which would have been valuable discussions.

The first event was an e-mail from someone hoping to re-establish the Norwich Hep C Support group. I'm delighted to hear about this - I'm sure that it can be up and running again, and hope that NHCN can help out with support and linking people together in that area. I have contact details for the group, and if anyone is interested, please get in touch.

The Telford area is also looking for new impetus to get their group up and running again.

At present, I'm hoping that groups can be established with the support of Hep C Nurses and other staff. The model I have in mind is that people should be referred to an information sharing meeting as soon as they are diagnosed (maybe a meeting every 3 months). At the meeting, medical professionals and experienced patients could offer advice, and also ensure that everyone is put in contact with their local support group. This would overcome the gap which often seems to appear between health services and support groups - possibly because the professionals are not always aware of the existence of support. It is my aim that the National Hep C Network should be very much part of this process, providing the experienced patients for these meetings and working hand in hand with support groups in their infancy, and development.

Support groups are always likely to be tricky to run - there are so many practicalities - where? when? what to offer? how to fund? how to recruit? etc. And beyond these issues comes the problem of people being ill and unable to attend - or worse, organisers being unwell and not having someone to take over for a while while they regather their strength. It is the intention that NHCN should be able to support this - I now have a map showing locations of people involved, and it's a great deal more full than I had expected. No surprise really, as I sent the last newsletter to over 100 people, and many of them sent it on to their contacts, so I suspect it reached something like 300 people - and will probably get to even more as soon as the website is running - probably a matter of days from now.

As well as these support group issues, there have been some more concerning matters. I heard about a patient not receiving treatment, as the specialist nurse had failed to send through important information to the consultant. This is infuriating. It speaks volumes for the commitment to treatment of that particular hospital. Letters will be written and sent over the next few days.

Even closer to home, I was disappointed to hear that one of the specialist nurses who has been so wonderful during my treatment is leaving. All I can say is that the hospital she is moving to is very fortunate, and I am certain that she will continue to offer the excellent care and support which she did to me and others in my locality.

This resulted in a massive concern for me, however. Will this be perceived as a chance to cut costs? Not replacing this nurse would be disastrous. The remaining staff are wonderful, but they cannot possibly deliver the same service with one team member missing. Nottingham Hospitals have recently amalgamated - this might already have led to local service cuts - and to reduce provision further would be unfair on the nursing team, and result in patient care suffering. I know that I had to wait to start my treatment, as one member of staff was on leave - how many more delays might the permanent loss of a staff member cause? This is especially relevant at a time when there is a Government awareness campaign taking place, and an Action Plan which should result in more testing, higher diagnosis rates and a general need to treat more patients. Add to this changes to guidelines from the National Institute for Clinical Excellence (NICE) which increases availability of treatment, and the need for greater provision, rather than less, becomes very evident.

Of course, it may not happen - the post may be being advertised as we speak - but I have letters ready to send this morning asking the questions.

Which comes back to another issue - the problem that Hep C provision has become an easy target for the cost cutters. Why? Because there is no ring-fenced funding for it, and no targets for inspection which hospitals need to achieve. Speaking as someone who works in education, I loathe the 'targets' agenda with a passion, and this is yet another reason why - if it's not a target, it doesn't count. As in schools, where the targets for tests are all important, it is those who make achievement of targets possible who get all the support, not those who will never influence them (in the case of schools, children who will achieve the targets anyway, and those who haven't a hope of getting there; in the case of healthcare, the healthy and those who aren't relevant).

Should my worst fears come to pass, it will be a case of media, MPs, anyone who will listen to get provision restored or increased.

Of course, it may never happen ... or is that just my suspicious mind?

So - incredibly busy - and I wish that was all. So much has happened this week. Suffice to say I've been in bed early each night and slept soundly - with a few evening naps thrown in. No doubt things will become clear in the future, as plans come to fruition.

For now, take care all.

Nick

NHCN on the move

2007-01-22T10:25:00.000Z

For most of this week, I have been visiting students in schools. It's a part of my job I really enjoy - getting back to my roots maybe, by being in classrooms with children. It's great to see the enthusiasm and creativity of both children and students, and a far cry from the worries and concerns about health.

In between all this, I have managed to fit in three important meetings relating to the work of the National Hepatitis C Network. The first major event was a meeting with Addaction UK. We have agreed to work together on delivering (hmm ... how appropriate is it for someone with hep c to de - liver something?) a series of training days across the UK. There will be 4 such events this year (limited on health grounds), spread across the country. These will be aimed principally at people working with high risk groups in a professional capacity, and promise to be very rewarding.

I started planning this presentation while waiting for the next major event of the week - a network meeting in Edinburgh. It's amazing how air travel has brought Scotland so close, and makes me wonder why I haven't visited this beautiful part of the country for 35 years. Just being there had the effect of making me want to go back with Vicki as a tourist and simply see the sights.

This was a fascinating meeting. Firstly, so good to see some familiar faces and to meet new people. It was also interesting to hear about the different approach being taken in Scotland towards Hep C awareness. Some concerns, however, were familiar. For example: what is the underlying agenda of the campaign? and who is setting this agenda? Considering that the people present are the principle Hep C support groups in Scotland, it is a concern that these facts are unclear. Once again, the issue of patient consultation was raised, and the question arose - are patients groups being listened to and their views acted on, or is all of the patient involvement agenda simply lip service as the agenda is still being set by faceless policy makers in offices?

The meeting itself was very positive, with potential for many effective partnerships for the future.

Finally, there was the NHCN trustee meeting. Once again, incredibly valuable as the Network moves forward. Many, many new ideas and ways forward, all of which should help to develop local based support for the many individual patients and their families who can benefit from it. For various reasons, the meeting had to be foreshortened, but so much ground was covered in such a short time, that it ensures an active build up to the conference in April. The main barrier at present is funding, but with any luck, we shall know about that very shortly. The best feature is that our website should be up and running by the end of this month - look out for it - and please add our link when we go live.

Actually, it all sounds like an incredibly busy week - in reality, it wasn't. Meetings were fairly brief, travelling was relaxed and company was extremely pleasant. I'm tired, certainly, but not as bad as expected for someone 6 months post-treatment. I also appreciate what Vicki does enormously. Having her there with me is a wonderful security blanket. If I lose track, she redirects me, if I forget something, she reminds me. If I do too much, she tells me to slow down. It's so good to know she cares like this.

Final highlight of the week was winning the pub quiz again! We're starting to get good at this now. I always knew my stock of utterly pointless information would come in handy.

And so I am now ready for the hospital tomorrow. Nothing to worry about, but nothing to look forward to either. Hep C still looms over me.

Take care all.

Moving on

2007-01-13T08:26:00.000Z

Over the last week, I have started to feel rather more human again.

After Christmas and the New Year, I was tired. Very tired. It was back to going from day to day in rather a haze, in the emotional isolation which seemed to come with treatment. My tolerance was low and my responses felt limited and rather weak.

This week has been better. Vicki and I have started to exercise a bit, using the exercise bike and stepper in our spare room, and this seems to help motivation. Vicki is back to her yoga. It's odd really, how working up a sweat and becoming physically tired seems to offer new impetus. As soon as I had exercised, I was busy again - writing letters to PCTs and MPs, preparing work and generally getting organised - I even proposed a module about health education to be included in Masters' degrees at work.

All this had, of course, the inevitable knock on effect - my stamina is very limited, and after the sudden bursts of energy, I collapsed like a deflated balloon. It's a shame adrenalin isn't readily available to overcome these spells.

In fact, by Friday, I felt the lecture I was delivering was distinctly on auto-pilot - not helped by by 7 hours of lectures on the Thursday. That doesn't mean it was poor (having presented it 4 times already, auto-pilot was easy), just that it maybe lacked a little of the creativity and energy which I usually expend.

So - a bit tired at the end of the working week, but isn't everyone?

As one might expect, these slight post treatment side effects weren't the only problem, and I now have an issue which may, or may not be related to Hep C. For years, I have suffered discomfort and pain from time to time in the middle of my shoulder blade. It hurts, with a burning sensation - usually if I have to spend time walking around. For years, I've considered it an allergy to shopping. Now it's been there for the past couple of weeks - permanently. It begins in my shoulder, is sore on my elbow and leaves my fingers stiff, numb and shaky. I have to constantly move my arm to stop the pain settling. Having ignored it for years, I now need to do something about it - so it's off to the doctor next week. It has also, temporarily, limited my ability to exercise fully.

The exercise is really for two reasons - firstly, after finishing treatment, I have developed a huge appetite, and around Christmas, this is potentially lethal - to my waistline anyway - and I need to be ready for the cricket season.

It's odd really - as Joni Mitchell says 'You don't know what you got till it's gone' - I am as excited as an innocent prisoner on release day at the prospect of doing some of those things I've missed - I never trained to play cricket before - now I can't wait - and today will be the first time I've been to watch my beloved Derby County in well over a year. Thinking back, I remember the last time - it finished with a violent head ache and constant shivering (I was on treatment), and Derby losing 2 - 0.

I suppose the reality is that I am regaining control of my life - not always wondering if I can manage to do things - just doing them and loving every second. In six months time, I should feel even better - and then there will be no stopping me!

That's the personal side - but there's also the National Hep C Network. This is a very young organisation, but in preparing for the next trustee meeting, I'm startin to see how far all this has gone. By the end of this month, a web site will be up and running, hopefully funding for activities and patient support will be in place, and the Network will be known to many involved in the field. It's incredible how, for a fairly limited amount of work, mainly sending e-mails, putting together letters to circulate and the odd meeting, it is possible to feel such a sense of achievement. That's just on a personal level, but I firmly believe that in a few months, there will be a real, visible impact which will start to make a real difference.

A very positive turn of events after a few tricky weeks.

Add to this Vicki's work, started last week, and it's looking good. We are even performing well in the pub quiz again - after last week's victory, we were second this week - all those lucky guesses and bits of useless information coming good again - I always knew it'd be useful to know and 8 letter word with 4 'g's in!

But there's always that down to earth moment - yesterday, my appointment for my 6 month post-treatment check arrived. Should be just a case of checking bloods etc, but likely to be a little nerve racking. That's a week on Tuesday - so all being well, no real problems.

Take care all ...

Nick

Why so bitter?

2007-01-06T09:25:00.000Z

Over the last few days, I've been considering the deep irritation and bitterness that I feel about my Hep C and the way it is managed. I have views on most things, and pride myself on being able to support those views, or re-evaluate them in light of new evidence.

Hep C is, of course, a deeply personal issue to me, so I look at it on two levels - the personal and the political. The two are, of course, inextricably intertwined, but occasionally raw gut reaction takes over from analysis. So, with apologies for this preachment (Google word of the day!), here is the analysis of why I feel so bitter.

I had Hep C for over 20 years. I did nothing to 'deserve' it, yet have been judged on this basis ever since diagnosis. I have encountered prejudice and know that even some of those closest to me assume that I must have done something. Why is this? Simple really. All of the publicity and media coverage insists on talking about transmission. As an educationalist, this is good - provided it is aimed at the right people - namely those who may be putting themselves at risk. In my experience, most people contract Hep C in their late teens or early twenties. It is these people who should be targetted with clear advice and information. Of course, it is also necessary to encourage those who have taken risks to come forward for testing. More important still to emphasize that what really counts is not transmission, but addressing the problem.

I was first diagnosed with liver problems over 20 years ago. Why, then, was I not tested until I went for a private appointment 3 years ago? It seems obvious, even to a layman, that if something is malfunctioning for 20 years, it will give out fairly soon, and that all manner of attempts should be made to identify the cause. Logic dictates that working through tests will, eventually, lead to Hep C. It didn't in my case - because I didn't fit in to any risk groups. This indicates that perhaps failure to screen is what has led to 80% of people with Hep C being undiagnosed. Is this down to poor testing guidelines or excessive financial constraints - or simple lack of interest? Clearly those donating blood are screened whether or not they take risks - why not others?

Hep C is played down. All research used through official channels tends to focus on the lowest outcomes, leaving a massive discrepancy in statistics - a dangerous discrepancy if the higher figures are correct. Research methods are also inadequate. This is a simple fact, acknowledged by the HPA in its report. So why restrict to only the reporting from within the system? There are vast quantities of valid research available from across the world. A moritorium of this would present significantly different findings to the internal research carried out. Likewise, interpretation of research findings may vary enormously.

The UK has a regionalised system of health care. Discrepancies between the regions are massive. For example, I live in a corner between 4 different regions. Thankfully, the one I was treated in scored very highly in terms of meeting the Government's action plan. Of the other three, one scored poorly, one scored 0 and one didn't respond! I was lucky that I pointed my car in the right direction and drove for 10 minutes.

Hep C can devastate. I look back over my years with it, and wonder how it has affected my career, my family life, my sporting ambitions (I was once a good cricketer) and my income. This is all irrelevant now - but I wonder what the true cost has been. I know for sure that I have received nothing in return - not even the cost of the private consultation - and to have put up with 20+ years of illness as a result is, at best, frustrating. That doesn't even consider the financial implications of missed work, missed opportunities, wrongly diagnosed medications, additional medication to combat treatment side effects, hospital car parking and simple lost time. Nor does it address the issue of not getting life assurance and many of the other financial priveleges accorded to others. Many find benefits difficult to access - it seems fairly typical only to get benefits on appeal.

All very frustrating - and add these to other psychological factors which can devastate even further, and for which the only support comes from those working voluntarily at local level, who may be there if you're lucky. Nurses do a wonderful job, but they are not trained counsellors, nor do they have the time for counselling - it simply isn't their job. So people are left with a frightening condition which can lead to psychological issues in itself, a treatment with side effects known to lead to severe depression in some cases and no support through official channels. Thank goodness for those patients who have rallied round to support others.

I could continue. In so many cases, in so many ways, people are let down.

Yesterday, Vicki and I sent letters to several MPs and Primary Care Trusts asking what they are doing to develop provision for Hep C. In recent weeks, the only thing I have heard is about Ipswich PCT sacking (then reinstating) a Hep C nurse. The problem is, Hep C has been left as a soft target - no inspection requirement, no official targets, no ring-fenced funding - nothing to prevent this whole area of health care being chopped away as the health service is told to balance its books from the £500m net deficit last year. As Private Eye points out, this figure, alongside £600m on management consultants seems rather irrelevant.

Perhaps looking at examples from other countries would help. Perhaps talking to patients over here would help. Hmm ... actually, that's a little unfair - it should read 'listening to patients'.

So what's the week been like?

Still not well. Getting there steadily, but incredibly tired, with various skin rashes and moments of irritability.

We won the quiz on Monday - quite an achievement with just two of us this week. One of those times when all the 'uncertain' answers happened to be correct. So we have our 4 pints and a bottle of wine ... oh great ... a very real case of it being the taking part, not the winning.

And life goes on.

Take care

Nick

2006-12-30T08:37:00.000Z

The last few days have taken me right back to my time on treatment and before, and have been a real demonstration of just how much I am still recovering.

To be honest, it became quite frightening and I was on the verge of going to see my doctor. However, a few days rest, and I seem to be getting things together again.

The first problem was just sheer exhaustion - not simple tiredness, but aching limbs, joint pains, a spinning head and the feeling that I was not connected to anything around me. I also felt very down. Life happened to me.

The joint pains became severe, and I was back to shuffling up stairs one at a time. I aalso decided to have a bath rather than a shower, which only happens when I don't feel up to standing up for any length of time.

The abdominal 'liver region' pains also escalated enormously, becoming very debilitating at one point.

Allied to this, I kept coming out in little red spots on my skin, had various digestive issues and my gums started to bleed when cleaning my teeth.

All very familiar territory throgh my Hep C experience, and something I thought was behind me. Clearly not.

The treatment was also familiar, and rather than getting up at 6.30 - 7 am, I simply lay in bed - as late as lunch time on one occasion.

Thankfully that all seems to have passed now. Still the vague disorientation and tired muscles, but not something which is a significant worry any more - just the lingering aftermath of fairly typical symptoms - the sort of thing which pre-hep C would have ended up with me being taken into hospital for tests and coming out none the wiser.

The impact of all this has been that I haven't done too much over the last few days.

We have been shopping in the sales - disappointing. At one time, sales used to be about buying things cheaply - now they just seem to mean buying things at a price only slightly more than I consider value for money. It also means the search not only for things which are reduced, but which actually fit. Now, I don't think I'm that strangely shaped (some may disagree), but by the time I have discounted most items, I seem to have about 3 things left which interest me. Then discount those items which are clearly in the sale because no-one in their right minds would buy them anyway, and I'm left feeling I may as well buy the one item left as I've been to all the effort of finding it. Maybe this is basically a male experience - Vicki seemed to find plenty of things - but simply looking at the space allocated to men's and women's sales shows a huge disparity - for example, Marks and Spencer ladies' sale extended as far as the eye could see. For men, there were about 5 racks. In Next, ladies were greeted by full racks, while the men's section upstairs was half empty and with enough floor space to add another 20 or so racks if desired. Sales have become a very sexist matter. Monsoon was just a joke. Maybe Tesco and Asda will be more to my taste.

Or maybe it all relates to the deep ingrained cynicsm of shops in general - plenty of lip service towards meeting customer needs, but no desire to do so whatsoever. Glossy and superficial is the kindest thing I can say - corporate glamour models, which beneath the veneer demonstrate an ugliness which only big business can manifest.

However, no doubt we'll keep going in hope of finding that elusive pot of gold.

I suppose the crowning insult was having my signature questioned at Marks and Spencer. The temptation to point out that my signature may well have changed after a year's chemotherapy was strong. I simply restricted myself to asking what training their staff have as graphologists and why the hell they weren't using pin numbers, as these are supposedly more secure. Apparently, it's the bank's fault. Bloody Nat West again. Just as I was heading towards full riba rage, they backed off. Shame, it could have been fun.

And now, we're back to normal. Grandma is still here. She is still undemanding and no trouble whatsoever. We listen to her stories (time after time), speak a little louder and walk a little slower when out and about - apart from that, the disruption is minimal - though it will be nice to have the house to ourselves again.

And as the New Year approaches, my resolutions are simple - to make certain that the National Hep C Network achieves as much as possible towards the aims of supporting people and making the blinkered bureaucrats of the Department of Health look at reality for once in their sheltered lives, and to give up curry (I have this one every year - I don't like curry, so chance of failure is nil).

Take care all.

Nearly Xmas

2006-12-23T07:41:00.000Z

This time last year, I was looking forward to travelling up to Stockport (does anyone look forward to travelling to Stockport?) for Christmas Day with Vicki's family. I was, to say the least, apprehensive. It was a couple of days after treatment and I had no idea how I'd be feeling, or if some of the irritability which came along from time to time would surface at some inopportune moment to spoil the day for everyone. As it happened, things turned out well - the day drifted by in rather a haze, as days tended to on treatment.

It's a strange fact that I can remember so little of some of the occasions during treatment. I remember doing things, but nothing specific. Vicki reminds me of incidents which I recall vaguely, and often inaccurately. At some point, I must look back through my blog and see what I was doing. As I often say, treatment passed in a blur, and, on reflection, seemed very quick - but some of the hours and minutes dragged by interminably.

Once again, this has been a busy week. I had another meeting to discuss delivering training to professionals, which again went really well. On reading the existing training materials, I was really impressed with the quality, but it really highlighted for me the value of patient input. Somehow, reading about symptoms, side effects, psychological impact seemed very detached. I know that my input, as a patient, will be effective. This is, of course, where the National Hep C Network comes in - bringing to life these long, medical terms and changing them from text book to flesh and blood. Not just that though. Professionals see people in these situations every day, but what we bring, as patients/ex patients/partners etc is reflection. Not only do we offer the immediate 'gut reaction' to incidents and general experience, but we consider, evaluate and respond to it. Under normal circumstances, professionals have little time to simply sit and talk, hopefully, that can be offered.

Suffice to say, this particular project is very exciting.

Also stemming from this meeting came the idea of getting accreditation for courses. I'm currently researching the possibility of offering qualifications for young people, professionals and NHCN activists in a range of aspects, from Hep C awareness through to training in Hep C. Again, this is really useful. It increases the sense of achievement for young people, adds to CVs and provides a basic criteria for those wishing to train others. I can see a particular value for young people who may have quite limited achievements at school, and especially for volunteers, aho may have been unable to work while on treatment, or who are trying to get lives back on track after a challenging time.

Organisation has also been in mind this week.

Vicki has finished writing the NHCN newsletter, and it will be sent out today.

Conference has been booked! It will take place on April 14/15 next year at Pride Park Stadium, Derby. It's fantastic to have secured such a prestigious venue - and it really is quite something! Facilities are superb. I paid special attention to access for disabled people, and to find somewhere which caters so well for wheelchair users, hearing impaired, special diets etc - and where a duty manager wil be assigned to help with any specific needs - is wonderful.

It's also so accessible. On a main railway line between Glasgow and London, 15 minutes from the M1, 20 minutes from East Midlands Airport. It seems ideal.

Of course, from a personal point of view, as a Derby County supporter, I may be a little biased - but I think everyone will be more than happy. It's also substantially cheaper than other venues, largely due to the very generous discounts which have been negotiated.

Come the New Year, I shall be contacting speakers, workshop leaders etc, with the aim of making this a truly memorable event.

Having said all that, I know there will be a cock up somewhere. It's my first time doing this, so I'll forget something! If I tell delegates to bring tents, we can always pitch them in the car park and hold the conference there!

For those involved with NHCN, more information will be forthcoming shortly.

On a more personal level, my tiredness persists. Maybe it's down to having purchased every loaf of bread, teabag and party snack available from Tesco. This Christmas will not help the Government's drive against obesity! Having said that, all the VAT will probably fund the invasion of Iraq for a week or two. I really object to that!

Oh - and Grandma has arrived. She is currently installed in the back bedroom, ready to hold court on Christmas Day as the families gather. In fact, she is very undemanding. We just speak a little louder, drink more tea and avoid TV programmes with controversial content.

So all is prepared. Presents wrapped, food ready and just waiting for the day.

And all that remains is to wish all of you reading this a happy, healthy and peaceful Christmas.

Take care, all.

Ready for a break

2006-12-16T07:31:00.000Z

All the students have now left for their Christmas break, which thankfully means a rest from lecturing and a chance to get on with some of the more mundane, administrative aspects of the job.

This week, the impact of post-treatment side effects has been very evident. Every night, I have simply fallen asleep on the sofa. It's not really a case of closing my eyes and dropping off, more a total inability to stay awake. Later, when we go up to bed, my legs feel like lead. For those few hours at the end of the day, it's like a return to treatment -though one of the not particularly bad days.

As well as this, I get joint pains, abdominal pains and my digestive system is not as efficient as I would like it to be. My eyesight is awful. Looking at the computer monitor at work gives me headaches after about 10 minutes, and while my flat screen at home is better, too long and I begin to feel very light headed. Oh - and my left eye has swollen up and become painful.

I also found myself feeling very low on a couple of occasions - no real reason for that - I just did, and then felt better later.

All this has contributed to my decision not to return to work full-time just yet. Fact is, I still feel the need to recuperate, and it's hardly wise to work myself into the ground until I am back to full strength. I suspect this isn't helped by the vast majority of my working hours (according to my diary) involving more 'intense' work - school visits, lectures etc, when I would really prefer my duties to be altered to reflect some of my health needs.

Whatever, sitting here now, looking back on the last term, I certainly have no sense of professional achievement - just a dull tiredness and frustration.

Apart from all that, it's been a slightly busy week. Mainly for Vicki! She has organised the next meeting of the National Hep C Network Trustees for January, and is busy working on the conference in April. With luck, we will have all the details for that ready fairly soon, and can start inviting people. NHCN now has a bank account - just waiting on the paperwork - and the charity application will soon be in.

After news reports yesterday(BBC News), it seems that plenty of awareness raising is needed. The number of Hep C diagnoses has actually fallen since last year. Why? Could there be a link with the crisis in health service funding? The answer is obviously 'yes'. I was told recently, from an extremely reliable source (a senior hepatologist), that the local PCT had requested that testing be avoided where possible, as the need to treat would be expensive. It's totally unacceptable - but herein lies the problem. As a long term illness, the buck can be passed, and the tab can be picked up, by future Governments. If, as is estimated, about 5,000 people reach end stage liver dsease by 2015, the cost at that point and beyond will become astronomical, with the need for transplants, cancer treatments etc. But why should this Government care? The next one can foot the bill.

One factor which may help is that greater funding for the NHS awareness campaign is being considered. Maybe we will see billboard advertising and TV campaigns as other developed nations have had. For example, this one from the US, using the image of an oncoming train (click on link).

However, what has been the real strength of the campaign to date? In my view, it has been the 'coming out' of many patients, including myself, and the mobilisation of those willing to be active and raise awareness of Hep C - many names spring to mind - all the hep c bloggers, Ron's forum, Martin's website, support group leaders, Martin's web page to name a few. That doesn't mention all the agencies working so hard to promote awareness, notably, the Hep C Trust.

I can't help wondering if money might be better invested in these groups - the Trust working and lobbying at National level, and the National Hep C Network disseminating support and awareness at a local level.

I suppose patient groups constitute something of a 'loose cannon', in that the information we make available is not necessarily information that the Department of Health would like to be shared. Nor can activities be controlled - provided they are lawful, any strategy is permissible.

Plus, of course, some of the disinformation being perpetuated by the NHS campaign is actively alienating some patients, so that many who may have taken part are reluctant to (see last blog entry re sexual transmission, for example).

Sadly, the Department of Health brief has missed the mark. Diagnosis is important, but prevention must become relevant at some point. Many people with Hep C actually contract the virus in their late teens/early 20s - so to tell people to 'Face your Past' in a rather accusatory manner is likely to seem irrelevant to them. Prevention should target students and young people - not those for whom it is too late. A simple way round this is to use wider screening as is available for many conditions, and refocus the campaign - at £13 for an antibody test, this is hardly expensive when compared to the potential cost of later liver transplants.

Anyway - I'll just put my soapbox away under the sofa...

More personally, again, an interesting change in me became apparent yesterday. Vicki cut her finger - not too badly, but a bit messy. For the last two years, I have shied away from blood - not out of any distaste or queasiness, but because of the fear that I might transmit my virus. This time, I was able to react quickly, help her out, apply first aid etc. Quite a relief to deal with these things confidently. Also shows how easy accidental transmission amongst the unwary (or undiagnosed) might be.

Also, Vicki is getting increasingly involved in her work supporting those involved with domestic violence - more time on the on line support forum, training last week and starting work properly in early January. Great news!

And now the final straight before Christmas. Shopping done, working out what we have forgotten, and waiting for our on line order to arrive. Oh - and visiting friends and family who we won't see on the big day.

So - in theory a relaxing week. The reality .... well, we'll see!

Take care all.

Sign up!

2006-12-10T08:15:00.000Z

Well done the Hep C Trust!

There is now a petition on the Primeminister's website, bemoaning the unwillingness of the Department of Health to recognise Hepatitis C as a serious condition, and criticising the failure to allocate sufficient funds to raise awareness.

We the undersigned petition the Prime Minister to Accept that the current public
hepatitis C awareness campaign is not working and that the rate of diagnosis is
nowhere near enough to prevent thousands of avoidable deaths. We further petition the Prime Minister to make it a government priority to do far more to diagnose the hundreds of thousands people in the UK who still do not realise that they are infected with this potentially life-threatening disease and then provide dedicated funding for their care and treatment.

In many ways, this is only the tip of an iceberg, and I'm convinced that this could have been taken much further - for example, asking that clear targets be set to ensure provision is maintained. Maybe suggestions could be made about awareness campaigns similar to those in other developed European nations - or simply that the Department of Health should monitor its own action plan to ensure it's being carried out.

No doubt all of this is being discussed, and will be pursued, and the petition is an excellent start to get recognition, without creating barriers.

What is now needed is signatures - so why are you waiting? SIGN UP NOW USING THIS LINK!

Derby FaCeIt Event, Nov 2006

This has also been a busy week for the National Hep C Network.

We now have a Deed of Trust in place, application for full charity status will be sent before Christmas and we are just awaiting all the appropriate paperwork to confirm the opening of our bank account.

We also have the green light to organise another Trustee meeting, set up the National Conference for April this year and produce all of the printed documentation needed. I'm currently getting together all the quotes for these and plan to submit everything by the end of next week.

Vicki and I had a really valuable meeting with our sponsors this week. It is really valuable to sit down and talk with them, and hear thoughts from an objective (and experienced) perspective. Without doubt, they are very much on our side, and recent changes to the way they fund charitable organisations mean that NHCN can proceed in a more structured and budgeted manner than previously, rather than requesting funding on an ad hoc basis. This means we can organise, invoice, have money in place and then respond to needs, rather than feeling that any changes need to be negotiated and agreed - so long as they still reflect the actions for which funding was requested.

I certainly left the meeting feeling motivated and invigorated at the future possibilities, not least by the clear definition on ways of working with other agencies, so that we work supportively, rather than duplicating work.

I've said many times before that I feel the Network has a very real role to play, and once again, this was highlighted. The next conference should be a real celebration of clear actions, following a necessary, but frustrating period of organisation, administration and establishment.

I also had a very useful meeting with a representative of Addaction, a national charity supporting young substance abusers and their families, and we discussed developing a major project, initially in the Midlands, and later nationally, to spread awareness of Hep C amongst professionals working with these groups. It is a fantastic opportunity, which can be developed into further support for patients, using the professional links, and we are due to continue discussions again in just over a week.

I'm also pleased that some comments I made in my last blog entry seem to have been shared by others, as I know from following the links to referrers to this blog. In particular, the Tesco 'dental kit' has been mentioned. This also highlighted for me the need to take this further, and I have now contacted Tesco to advise them of this ill-contrived attempt to empower customers to carry out their own dental care - appealing though it may be in light of the abysmal dental provision in the UK. Personally, I believe it's a ploy to reduce obesity - allow people's teeth to deteriorate so much that it's too painful to eat - then they'll lose weight! The sort of caring one might expect! Or maybe it's just a ploy to increase the profits of certain insurance companies, who ensure that people pay several times the amount in premiums that they would have paid had they been able to pay for treatment at the time.

Other than this, a fairly typical pre-Christmas week - a bit of shopping (we're well organised! - all done now apart from the fresh food), plenty of work - mostly visiting schools and a couple of lectures and meetings - and looking at the more extravagant decorations in our locality. 8 foot high snowmen and Santas proliferate, rope lights in vast quantities twinkle like a radioactive dump site, and we seem to have Santas dangling from every available hook or tree. On a cloudy night the reflections are reminiscent of the aurura borealis.

We have even put up our tree, and are looking resplendent in our comparatively understated way.

We are also receiving vast quantities of deliveries - mainly because we have ordered a large amount of stuff on line. Unbelievably, one delivery (from Boots plc) was simply thrown over our 2 metre high gate. I'm dreading opening the presents, as some items were a touch delicate, and may be damaged. Not only that, they were a day late (having paid £5 to guarantee a delivery date), and no note of delivery was left, so they spent a night outside in steady drizzle. I have so far restrained myself from contacting them, as it is best to be in full control when I do, but I am livid about it.

In amongst all this, Vicki went on a training course as part of her work with victims of domestic violence. The information she brought back was fascinating, and so valuable. She is steadily increasing her involvement with this, and I am delighted that it is going so well.

As for me - I'm tired. My legs are very heavy and a bit wobbly on the stairs, I'm falling asleep very easily in the evening and waking up unrefreshed and generally feeling a bit 'off'. Nothing to worry about - just busy and still rather post-treatment. I know this will keep going for a while, and as I ride it through, and treatment becomes a distant memory, I will regain my full stamina.

Anyway, enough for now.

Take care all.

Countdown to Christmas

2006-12-02T07:37:00.000Z

Last night we went to the local Garden Centre to be greeted by a 7 feet tall S & M Santa in a resplendent rubber suit.

It's that time of year again. Vast amounts of money spent, preparing for the family to descend. It'll be wonderful (could that be sarcasm?). This year, Vicki and I are doing Christmas Day - there will be 10 of us in total gathering around the festive table. Nodoubt it will be the usual round of overeating, sleeping and wondering what to do with those presents sent by an old family friend who hasn't been seen in years, and doesn't quite realise that you are no longer 12 years old.

We also have the added joy of introducing the two sides of our family. Vicki's grandma will introduce herself with 'I'm 99 you know'. We have wondered if she's planning on changing her name to this by deed poll. My mother will constantly insist that we remember all the people who are starving, hence just tainting the vast quantity of unhealthy food in front of us. Vicki's brother has had his guitar banned, and I am not allowed to mention her sister's experimental hairstyles during the '80s - nor her boyfirend's idiosyncratic laugh, reminiscent of a seal with a strangulated hernia. The cats will go beserk - partly due to all the strange people (in both senses), but mainly due to all the easily accessible food. Unreasonable - we have bought them turkey and cranberry flavour catfood (we don't spoil them - they have to share the catnip treats from their advent calendars). And the afternoon will be spent in a dozing daze, as we try not to sabotage the Queen's speech for grandma, and the wind orchestra plays gently in the background (well - ok - we fart and belch to the rhythm of 'God Bless Ye Merry Gentlemen'). This is where my brother comes into his own.

I'm already planning a trip of peace and goodwill next year - Basra is my current location of choice.

The last week has been busy - mainly work and preparations for Christmas. In fact, apart from the fresh food and presents for Vicki and my Dad, everything's ready. Our bank acconts show distinct signs of stress, but it's done - now we can just enjoy travelling around, searching for the tackiest Christmas display this side of the Atlantic. Actually, I really admire people who go to such effort and have the strength of character to tolerate the ridicule they must encounter. I especially love the ones which appear unfinished - where one can imagine hours spent, only to be told 'I think that inflatable Santa wold look better six inches to the left', resulting in the first festive family row and a response of 'Well you move the fat ******'.

In amongst all the frivolity, a lot of important work has been done. The National Hepatitis C Network minutes are written, the action plan prepared, a constitution drafted, a bank account on the point of opening, and the charity registration form ready for completion. It's amazing how much can be done so quickly. In a couple of months, a fully fledged charity will be up and running, and the rather nebulous 'establishing and organising phase' will be over. This does rather depend on the input of our sponsors, and a meeting with them later this week will be a clear indicator if how much of this hope and vision translates into reality. At a more local level, I am meeting with the training officer of the Derby drugs action team (Addaction) to discuss how NHCN can be involved in their work, by way of support and awareness raising. It could be a really significant week.

Having said all that, it would not be a normal week withot something to rile me. No - not the dentist again - although their reluctance to do any treatment until their new insurance scheme comes in has rather galled me - and is causing me a lot of pain as well - but a related issue.

In Tesco yesterday, I saw two items - a home dental kit, comprising a mirror and scraper, and a toothache kit, complete with temporary filling material. When will people learn? Dentists have sterilization procedures for a reason - that reason being to avoid blood to blood contact between themselves and others. I saw no rubber gloves in the kits, nor did I see guidance that these are for use by one person only, not to be shared under any circumstances. No doubt it won't be a problem - intrafamilial spread of Hepatitis C will happen, and be calmly attributed to sexual transmission - a transmission route which can still only be described as 'presumed', despite all the research into it, and the number of studies which contradict the notion entirely. It seems it's easier to write off unknown or 'domestic' transmission routes as sexual, hence ensuring that people continue to have their ignorant prejudices, and that Hep C will never become a vote loser for the politicians.

Now here's some intriguing information, which can be interpreted as the Department of Health shooting itself in the foot.

In 'Hepatitis C - Essential Information for professionals and Guidance on Testing' (NHS, 2004), a survey at sexual health clinics (p.12) showed 0.65% prevalence among those not reporting injecting drug use. If we stick with their overall prevalence figure of 0.4% (absurdly low compared with other studies and prevalence in other developed countries), and exclude large groups of the population who are very unlikely to attend sexual health clinics (children, elderly, some religious groups, those who go to their GP for sexual health advice etc) it seems very likely that this figure is in fact below even their suggested prevalence rate. However, the same report also mentions a less than 5% figure (an absurdly vague figure, and way beyond the less than 1% suggested by most studies) among long term sexual partners of Hep C patients (p.10). It seems likely, that it is, in fact, more likely to be the extremely close lifestyle of long term partners, and the greater levels of closeness which promote Hep C - maybe through sharing personal items, dressing each others' injuries, accidental cuts and sores etc which is transmitting the virus - nothing to do with sex (although the intimate nature of sexual contact may lead to virus transmission during sex - rather in the same way as one might catch a cold). Basically the figures make no sense, and having spent a day last week finding 3 pages of links which disprove sexual transmission, I remain utterly convinced that the myth of sexual transmission should be confined to the ranks of fairy tales.

How bizarre that sharing cocaine straws is not recognised, despite the blatantly obvious blood to blood contact which takes place. Maybe it's rather close to home for some.

If I was marking this 'Professional Information' as an undergraduate dissertation, I would probably comment 'stop trying to make the figures match your required outcomes, and consider them impartially'. Or, maybe, 'Wake up and smell the coffee'.

An e-mail about this will soon be winging it's way to those hallowed DoH offices. At least, if prejudice is based on ignorance, we know where it starts.

Interestingly, on Monday, I am delivering a lecture to my lovely trainee teachers (lovely, due to all the congratulations I've had for clearing my Hep C) I will be talking about sex and drugs education in primary schools. Although this is principally about values transmission and developing self esteem, and how the UK now tops cocaine use and teenage pregnancy leagues in Europe, they will leave well educated in these aspects of disease transmission.

Enough for now.

Let's continue the festive build up.

Take care all

Back to reality

2006-11-25T09:49:00.000Z

After an extraordinary week, it's back to earth again.

Many thanks for all those who sent best wishes etc after my successful treatment. It was a feeling which I can only describe as being like winningthe World Cup. Well - I assume that's what it felt like.

When I've won cricket cups in the past, I remember the immediate elation, followed by a spell of almost numbness, while the implications sink in. It's like that, but exaggerated. Having been so busy this week, the sinking in has barely started really. What has really hit home is how those who fail to clear must feel. This is why I need to continue with the awareness and support work I started during my illness. A massive debt is owed to some of those people, who have been so supportive, despite all their own challenges and difficulties. I intend to repay it. My story is now positive, and should be used to bring hope.

It has made such a difference. I feel alive, despite being shattered. I lie awake, not thinking about terrible scenarios and what ifs, but thinking of the plans for the future, all of those bright, shining lights, which at one stage could have been extinguished with a few words, but now glow and build revealing a wonderful world around me.

Back to this week. After East Midlands news on Tuesday, it was back to earth, with work on Wednesday, and work from 7.30am - 8.30pm on Thursday. Even my lunch break disappeared as I did an interview for a local radio station, and ate my sandwiches in the car as I drove back to work.

Thursday also saw a newspaper article in the local paper.

I was really pleased with this, as was Vicki - if you follow the link, her comment is there.

I think Vicki's reaction has also brought things home. She is so full of energy, happy and positive. I got home on Thursday to find the house cleaned from top to bottom, my dinner ready and Vicki working on the support line for victims of domestic violence for which she volunteers. Not that she hasn't done these things before, but it was with a lighter, more relaxed approach. Nothing makes me happier than to see her so happy.

Yesterday was the FaCeIt awareness event in Derby. I think it went well. There was an entertaining interview with BBC Radio Derby, as a lorry reversed (with full sound effects) to about 2 metres from where we were standing, followed immediately by the chiming of bells. As it was live, no chance of stopping and waiting (as we did in Leicester on Tuesday, as annoying people walked past making stupid noises - and as a store detective chased, caught and pinned down a young (and very noisy) shoplifter). We simply kept going above the noise. Live interviews are always tricky. A mistake in a recorded interview and all you have to do is say 'bo****ks' to ensure it won't be in the final edit - live, and it's got to be right first time.

A good addition to the event is the stakeholder meeting. This gave a chance to catch up on the event organisation, share new ideas and network with others. I raised a few issues regarding sharing of resorces between the National Hep C Network and the FaCeIt campaign in terms of communication between health professionals, new patients and those wlling to offer support at local levels. We discussed raising awareness among intranasal cocaine users - the young professional, weekend drug user who doesn't allign himself with the needle using heroin addict. However, it seems the Department of Health lack evidence of this mode of transmission. A bizarre admisson, when sexual transmission, of which there is very, very little evidence (in fact evidence against it) is so prominently stated in their literature. We also discussed how GP surgeries can be encouraged to display leaflets - a bit of desire from PCTs needed here - and other ideas, such as testing being available at events and maybe at music festivals in the Summer. I know these thoughts will be taken on board by those who organise the campaign. The question is, is the Department of Health really committed to patient involvement, or is this purely vote-catching lip service? We'll find out soon, no doubt.

Another pleasing feature was the presence of Bob Laxton, MP. Bob is vice chair of the All Party Parlamentary Group on Hepatology, and although his presence was quite brief, due to other commitments, his willingness to attend is an example to many other politicians. He is now aware that I shall be in touch with him shortly regarding the NHCN.

The event itself proceeded well, despite the cold, and looked lovely in the twilight, as the Christmas lights came on.

So, next week is back to normality.

I just had a call from a cricketing friend, asking me to join them for a drink next week, and the phone calls have been wonderful - my mum was in tears, my dad was delighted, others were just plain joyful, including work colleagues.

It's been quite a week and one that will be unforgettable - I shall certainly be joining our American friends for Thanksgiving in the future.

For now, take care all.

Final result

2006-11-21T17:29:00.000Z

Today went pretty much as expexted. Met reporter and cameraman, filmed going into the hospital, brief interview - then to see my nurse. More setting up the camera, discussion of what was going to happen - then the big moment.

My poor nurse was so nervous.

However, she was able to tell me that I have cleared the virus.

Another interview, off to Leicester, more interviews, lunch, interview for the Derby Evening Telegraph - to be printed Thursday - and now home.

An hour or so to rest, then off out for a celebration meal with my mother.

Done, finished, no more to be said.

I am one of the lucky ones.

Countdown to D-day

2006-11-20T23:08:00.000Z

So tomorrow could close a 20 year chapter of my life.

We will be up early, killing time until we have to leave for the hospital - wandering aimlessly around, and trying not to talk about it, while doing meaningless jobs in an absurdly meticulous manner.

At about 9.45, we will leave. We will get to the car park at about 10.00, and by 10.20 have found a parking space (yes - the car park really is that bad). Hopefully parking won't be too big a trial, and the thought that it could be the last time in a long while that I have to pay for the privelege of being a patient will be some consolation.

Then, at 10.30, we are due to meet the reporter from BBC East Midlands News. He is going to film a brief interview, then follow us into the hospital.

At about 10.50, we will try to find out where my nurse is. It's a choice of two departments (thankfully close together), but I forgot to ask where she would be for the appointment.

At about 11.00, there will be a brief chat about where the reporter is going to set up his camera, how he's going to film it etc, and then 'ACTION'. One take, no lines to be fluffed, and strictly no swearing ... break a leg as they say. At least I'm in the right place if I do!

And within those next two minutes, our future will be decreed.

All those decisions about the future will hang in the balance - career, family, lifestyle, sporting interests - everything.

Tonight, it's started to hit home. We went to the pub quiz and did abysmally - however, we won £28 by correctly answering the raffle question. Before the quiz, during the quiz and after the quiz, we talked about tomorrow.

I think Vicki is more nervous than I am. We go in tomorrow with eyes open, being totally positive, but always with that little niggle in the back of our minds. Rather like an interview for a job, when you know you've done all the right things, you know you should get it, but you also know that it's all a matter of chance - the outcome is already decided, and no-one has any control over it.

Of course, everything will hinge on word - will that word be 'positive' or 'negative'?

And then there's our reaction. I know I shall feel as calm as possible, and I tend to be quite phlegmatic, but how will it be, cometh the hour? Vicki shares this. She's really worried, and has kept much of it bottled up - almost as though it's a taboo subject. In fact, we both know that there's no point going over it time after time - que sera sera.

Whatever happens, my final test result will be broadcast on the 6.30 BBC East Midlands news. If you're watching on Sky, (or if you live in the East Midlands, of course), you will find out the result then. If it isn't there, you know the test came back positive and my reaction wasn't good (or maybe that I was and I finally told the virus to go **** itself).

Anyway, if all goes to plan, it's then off to Leicester to the awareness event taking place there, still with the film crew with us. Of course, I shall be making phone calls constantly - some people need to know before it's on the TV - especially my parents. Vicki will do most of the calling, as I will be driving. No doubt, before I get to Leicester, the jungle drums will have shared the message far and wide. As far as I'm concerned, if it's negative, I will be shouting from the rooftops - if not, somewhere quiet and something to occupy my mind will be good.

So, will tomorrow be VHCV day, or a battle lost and a war still to fight?

Just a matter of time now.

A night on the tiles!

2006-11-16T07:21:00.000Z

Sadly not an evening of drunken debauchery - such things will no longer happen (and not a bad thing really) - but the bathroom looks wonderful.

Courtesy of BT, we have been off line for three weeks. If you're planning on reading the whole entry this time, it may be worth getting a cup of coffee, biscuits and settling in comfortably. Alternatively, just prepare to skim through the utter drivel and just look for the good bits - just like reading 'Lady Chatterley's Lover'.

The cessation of blogging started, of course, when we moved house. We're now settled, and at the 'sorting things out' stage. Last night's five hours of tiling being a good example. Boxes have been recycled, clutter diminshes daily, and it feels like home.

Thankfully, moving day fell during a very quiet week at work. We had already decided to move ourselves, rather than pay out for professional removals, so it involved a lot of work and heavy lifting. I did most of this at the old house, while Vicki sorted things out at this end - good teamwork.

Once again, it emphasized how much stamina and muscle tone I have lost. I had severe joint pains and felt terribly light headed and fatigued. One of those times when the reality of Hep C treatment hits home, and makes it clear that even 4 months after treatment, there is still a lot to cope with. To add to that, circumstances combined to irritate me enormously - BT were abysmal, and I can't wait to change my service provider. The council got my name wrong, Sky tried to install their service at the old address, the post re-direction was wrong, British Gas got the address wrong. Remarkable how big organisations contrive not to do their jobs and cause extra work at a time when we could have really done without it. I suspect the outcome is that we will use other services, and probably far cheaper ones in future.

And throughout this time, we were trying to organise the first meeting of the Executive Group (new name following the meeting) of the National Hepatitis C Network. Lack of communication made this very tricky, but we sorted it out, by grabbing 10 minutes at a time on any on-line computer.

This meeting happened over the weekend, and is probably the most significant highlight of the three weeks. It went incredibly well, and those participating left with (I hope) a sense of enormous achievement - and a sense of the scale of the work we are taking on.

Over the next few months, we plan to formalise the existence of the Network - opening a bank account, charitable status, developing networks with individuals and other agencies etc. Plans were put in place for lobbying actions, and a structure for the organisation was decided. People affected by Hep C in the UK should expect to get more information about this in the near future - once the minutes are typed up, which is likely to be this weekend. An action plan is already written, and a meeting with our sponsors is being arranged - date agreed, time and place still to be confirmed.

Immediately before this (on the day before we moved house), Vicki and I travelled to London for a meeting with the Hep C Trust. People from there reading this will be delighted that the discussions we had reflect the executive's decisions about the nature and structure of the Network - as an organisation operating to co-ordinate support and awareness at a local and regional level, working alongside established groups as and when appropriate - above all, not duplicating work. We have limited enough resources as it is.

This is also a rallying call for people in this country. Our aim is, to involve people representing all parts of the UK, and the structure we have considered should ensure that the workload from this will be minimal - a couple of hours a month maybe. If anyone is keen on getting involved as a representative of their region (eg by passing on letters/e-mails at local level to MPs, health care organisations etc, or maybe running a support group, or perhaps acting as a refferer for others etc), please let me know. We will be chasing people up!!

None of this is easy of course. I suppose any health related charity is prone to having members who, at times, are unwell and unable to function as effectively as they may wish, but we have considered this. We also hope some will see this as motivation - a chance to feel a real sense of achievement from a few actions taking place in the comfort of home - with the opportunity to build on this in the future.

Since the meeting, things continue to move on apace. On Tuesday, I attended a meeting at Derby University, discussing inclusion and the potential for input on the health Department's training courses in the future. It was a really valuable meeting, and hopefully part of a much larger process, which will involve people from many diverse backgrounds in contributing to the training of health professionals. it was also a great networking opportunity and presents the chance to develop mutually beneficial working arrangements with a range of organisations.

It also offered the chance to promote the National Awareness Campaign (FaCeIt)'s visit to Derby. I will be fronting this next Friday (24 November), and have already discussed it with the health correspondent from BBC East Midlands News.

That leads me into a whole new area.

On Tuesday, I have probably one of the most significant days of my life. I will be going to the hospital to get my final test results (SVR).

I could have had the result already, but it is to be filmed by BBC East Midlands, as part of a lengthy item, comprising several bits of media work carried out throughout my illness - just after diagnosis, immediately before treatment, during treatment, administering my injection and now.

It'll be fascinating to see how I've changed over that time. Looking back on photographs gives me an oversight into how my appearance has altered. These interviews are likely to show how my ability to communicate has changed, and how my confidence has really taken off. I notice this so much at work. I now feel more relaxed, confident and able to express myself. I laugh more. I actually feel human. So different from the sense of utter alienation I felt previously. I also feel strong and able to keep going. Hence, last night, I managed five hours tiling after a day's work. OK - I'm utterly shattered and aching all over (today will not be good) - but I did it. Odd how things which some people do every day become an achievement.

It sounds as though I'm fully recovered. Simply not true. My last couple of weeks at work have been very intense, and I have had commitments above and beyond my part-time hours both weeks. Partly my fault - I have taken on additional bits where colleagues find they have timetable clashes. This has got me back into the habit of sleeping during the day. I work, get home, and by 6pm, I'm asleep.

There are many other signs that I'm still suffering treatment after-effects - aching limbs, headaches (maybe eyesight related), general fatigue and heavy limbs, occasional speech slurring, and still a lingering emotional sensitivity and slight irritability.

Or maybe I'm just getting old.

And throughout all this, Vicki has continued to support me magnificently, despite frequently feeling unwell herself. She's up now, having had an awful coughing bout following a nasty cold over the weekend. I suspect this is a natural reaction to the stresses of me being on treatment - as a teacher, I know it's common to be ill as soon as a holiday starts - it's as if the body finally itself to be below par.

In between this, Vicki has applied to do voluntary work for our local Women's Aid organisation. She is desperate to give back some of the support they gave her when she lived in a Women's Refuge before we got together, and this is a great opportunity.

Having said all that, the key thing is waiting on my results. It's hard work, knowing they are here and one phone call could give me the answer, but the potential to use this opportunity to significantly raise awareness seems worth it. And anyway, it will change nothing, the result will be the same whatever, and nothing will be slowed down.

So - that's enough for now.

Just two things to remember:

IF YOU WOULD LIKE TO BE INVOLVED IN THE NATIONAL HEPATITIS C NETWORK IN ANY WAY, PLEASE LET ME KNOW. This applies to patients, ex-patients, supporters, and anyone else affected.
IF YOU ARE IN OR AROUND DERBY ON FRIDAY 24 NOVEMBER, POP ALONG TO THE MARKET PLACE AND SAY 'HI' - IT'D BE GOOD TO SEE YOU!

For now, take care all.

Moving house

2006-10-22T10:36:00.000+01:00

We are in the throes of packing, and all the chaos that entails. Shifting boxes and doing more physical things is a rather salutory reminder of how much treatment and Hep C have taken out of me. My limbs ache, my head aches and I'm shattered - so why couldn't I sleep last night?

At 4am, Vicki and I were sitting downstairs (yes - I accidentally woke Vicki too), having a mug of hot chocolate.

At least we're almost packed now - our back room is full of boxes, there are bin liners full of rubbish (all those useful things which we kept, which 'might come in handy', but were really just taking space) and the cats are getting increasingly tetchy.

Fact is, of course, Vicki and I are also tetchy - we're at that stage where we just want to go and the whole moving issue just needs finishing - rather like a long plane flight after a holiday.

Last night we watched a bit of the american Hep C telethon on line - it was very enjoyable, and plenty of useful websites kept popping up in the chat room from organisations, individuals and support groups working in the US.

It was also a busy week at work - my own fault, I suppose, agreeing to do an extra session again. There was a fascinating presentation from a child protection officer, offering a huge amount of graphic information, which was at times hard to take. It's reality though, and should be heard.

Apart from this, we have had all the jollity of changing address with several million organisations - and probably forgotten more than a few. Vicki did most of this while I spent the day at work on Thursday. Then we spent yesterday and Friday going to all the places which needed direct contact to change addresses. Why is it that my bank (Nat West) needed a passport, while Lloyds didn't for Vicki? Very odd - maybe Nat West have less faith in chip and pin as a means of proving identity. A concern for card holders everywhere!

Our greatest irritation this week has been our dentist. Professionally, I have always been delighted with his work (my father was a dentist, so I am able to check out what he does). However, the new NHS contract has caused a major problem. Like many dentists, our practice are opting out of NHS dental work. However, they are taking this even further, and moving totally over to one insurance company - Denplan, owned by Axa. The premiums are extortionate, and for me, with my hep c, will almost certainly have an extra loading. No reason for that - just the standard chance to make a little more money. We had planned to remain as private patients - but can't. How absurd. Of course, Axa are developing a gradually higher profile in NHS politics - I believe (from reading Private Eye), that they sponsored certain health related elements of the Labour Party Conference. Now - I don't believe that private companies do something for nothing - maybe there is a broader political agenda ... well ... one can only conjecture.

Personally, I believe the new contracts for dentists are all part of the Department of Health's drive to reduce obesity. Make NHS dental treatment impossible to find, and people will end up in so much pain they won't be able to eat.

Insurance is fine - but only if it is affordable and sensibly priced. Recent experience would imply this is the Government's way forward with its health management - should lead to more managers, more admin and less patient care - precisely the policies which have got it to where it is today.

Of course, having had Hep C, I may find it tough to find a dentist who will accept me. What a sick state of affairs.

Anyway, we shall be off line now until November 1st, when we get broadband connected again - though I may be able to access the internet elsewhere.

So for the next couple of days, it's back to the packing.

Take care all

Strange days

2006-10-17T09:47:00.000+01:00

How odd yesterday was.

I went for my final test at the hospital, so now the waiting starts.

What was so peculiar was how different everything looked. As we drove in, I kept asking Vicki stupid questions - 'Did we always come this way?', 'Was that building always there?'. Most strangely of all, I noticed that one of the hospital buildings we walked past was an entirely different design, colour and appearance to those around it. It was like taking the journey for the first time. I also forgot which floor we needed to go to for the clinic.

Yet again, it was one of those times which reminds me how unwell I must have been - not only during treatment, but before I started attending the hospital.

I suppose I shouldn't be surprised - I have often commented that one of the positive elements of hep c and treatment is the ability to see the world with new eyes. Yesterday was just such a literal demonstration of that, so much so that I felt I had to write it down here!

We have also nearly got our moving day - we should have found out yesterday, but the solicitor was off sick. Hopefully, we will here very, very soon - I'm waiting for the phone to ring.

And then ... shopping! Our priority is a 3 piece suite, our old one having done plenty of good service, but now being decidedly threadbare. A list is still developing of other items, but these can wait.

Yesterday had even more highlights - a really pleasant conversation with a friend who we met at the NHCN conference, Vicki getting involved in volunteer work with our local women's support organisation and our friend with whom we usually do the pub quiz falling down some steps and hurting herself rather badly (sorry - that wasn't a positive highlight - just a significant event). Final highlight was finding our photograph on the Rocky Horror Show fan club website (http://www.timewarp.org.uk/lab/leicester/11.htm)!

We still went to the quiz, despite Vicki feeling pretty awful, and came 4th - a clear demonstration of how we missed the support of our friends. Hopefully, Sue will have recovered by next week.

I mention this, as it led Vicki and I into a discussion about fund raising for the National Hep C Network. She had some great ideas, with real potential to move things forward. We will spend a while today noting down all these good ideas. It is a simple fact that the most effective organisations are the ones with most money, and that producing that money leads to raised awareness, deeper commitment and teamwork. It certainly is an area well worth exploring.

Apart from that, an awful night's sleep and a violent headache. Maybe a touch of 'post-test' stress, maybe due to moving, maybe good old fashioned tiredness, maybe post treatment side effects ... maybe, maybe, maybe. Perhaps tonight will be better and I'll feel a bit more human tomorrow.

Take care all.

2 more days

2006-10-14T08:06:00.000+01:00

Thankfully, this has been a busy week. I say thankfully but in fact it's been really tiring. My arms and legs feel heavy, I have a headache and really just want to rest up.

Actually, yesterday was rather unreasonable - I started with a meeting at 8.45, delivered 3 lectures and had another meeting with only one 15 minute break in 6 and a half hours. Not having a break meant that the exchange of contracts on our new house couldn't take place yesterday - not that it's a problem, it just delays a process which we really want finishing. We're now just waiting for Monday to have our moving date confirmed - it will be 25 October.

On top of this, both of us have had colds. I have just dosed up on various remedies, not been too bad. Vicki has felt rough - of course, she's also coping with her other health problem at the moment, which seems to be an infection rather than anything more exotic. However, her antibiotics have some side effects which aren't pleasant - basically just nausea etc, but not nice. I also suspect that with the massive stresses of supporting me through treatment are taking their toll. It's rather as if she has kept going regardless through the year, and her body has now allowed itself to to let down the defences. I know this is common to many carers, and demonstrates again the desperate need for them to have as much support as the patient.

So both of us are loaded with side effects, but still going!

We finally arranged a meeting of the steering group for the National Hepatitis C Network. This aspect of our work seems to be going really well, and this meeting will mark the change from a large number of fantastic ideas to agreed courses of action. I am still determined that this will become a genuinely effective organisation, and the groundwork now seems to be in place. It will be great to meet this group of people again, and enjoy a meeting which I am convinced will be highly professional, extremely motivating and a real landmark in the development of Hepatitis C awareness and support - not to mention that a meal on the evening will be a great social opportunity - probably one of those situations where the more relaxed setting produces as much valuable progress as the more formal gathering. Currently, I'm trying to sort out an agenda, which is rather tricky - being vague is easy, but the main concern is overlooking something vital. I know that other people won't let that happen though!

Socially, it's been a quiet week. No quiz this Monday. Neither of us really felt up to it.

The big event of the week was the Rocky Horror Show on Thursday. We dressed up again, travelled the 40 minutes it takes to get to Leicester and had a wonderful time. We even made a few friends!!

So that was the week. At the start, I said this had been a 'thankfully' busy week. The reason is simple - I go for my SVR test on Monday. Finally, the limbo time is over, and the first part of the process to discover whether or not I have managed to clear Hep C. It's a rather nervous time - absurd really, I won't get the result for a few weeks - that's the really stressful bit - but it feels like the beginning of the end. It's so odd - how many absurd thoughts can be enterntained at times like this? I'm at the point of looking back and thinking 'might those missed tablets have made a difference?' 'Did my appendix operation change the outcome?' 'Have I overdone things at times and has this had some effect' - not to mention some of the really bizarre thoughts which flutter about like ephemeral butterflies. (Sorry - always wanted to use that image). I suppose the main thought is about all of the post treatment symptoms I've had - so similar to my pre-treatment ones. I know it's totally insignificant, and is probably only down to the fact that my liver is having to do some work again, and I'm generally doing far more, but ... it's another issue. Everything seems to be based around the irrational idea that if treatment fails, it's my fault - utterly stupid. It's no-one's fault, but these things happen, and to far too many people.

Having said that, time for these thoughts is limited - and even more limited as we'll be moving house in just over a week, and have all the joys of furniture shopping to come - IKEA's profits should rocket over the next few weeks!

So - changes happen, life goes on and the final hurdle approaches.

Take care all.

So this is what colds are like!!

2006-10-08T14:32:00.000+01:00

Having felt very under the weather all last week, this week has reminded me what having a cold feels like!

Only to be expected really - the body produces interferon naturally to attack viral infections, and as I've been full of it for the last year, I have avoided colds. Now that my body is 'going it alone', it's no surprise that this irritating little virus should decide to have its revenge. I suppose my immune system is pretty low right now, and I can expect this to continue in a cycle throughout Winter - or at least until we have our flu jabs in mid-November.

Vicki has asked that I mention that I am kindly sharing my cold, and is sniffing and coughing next to me, moaning away that it's all my fault. Oh well - being male, I'm used to blame.

We're also still waiting on the results of Vicki's tests - one lot came back and showed something wasn't quite right, so another was requested the following day, with a promise that the results will be back in two working days - ie tomorrow! This must be a record for a hospital laboratory.

Friday was a day of excruciating pain - I had to part with money. This means that we should know our moving date very, very soon - and be in our new house within 2 weeks. We can't wait - just want to get on with packing, buy the furniture we want and get settled.

The date for my final test to establish whether or not I have cleared my Hep C has been set for 16 October. Then there will be the three week wait for the result to come through - quite probably being filmed for East Midlands TV. It means a very tense wait, constantly trying to just occupy time to avoid over-thinking. Moving house will help enormously.

Another highlight this week was the article for which Vicki and I were interviewed appearing in the Daily Express. Feedback about it has so far been very positive, and we're really pleased. The journalist did a fabulous job, and it is without doubt one of the most accurate I've read. If anyone wants to see a scanned copy, let me know.

After all that, yesterday was probably the high point. We travelled to Birkenhead to visit good friends who have been incredibly active in the field of Hep C awareness in their regions. It's amazing to meet people who have done so much - and once again demonstrates how much some people do, without it ever really becoming generally known. It also shows the depth of knowledge, skills and ability within the Hep C community - those who have sought to keep it in the shadows should be very, very wary!

Better than that, we had a wonderful time, enjoying a good chat, generally putting the world to rights and experiencing the joys of Thai food for the first time. We can't wait to see them again - and it shouldn't be too long, all being well.

Next week will be quite tough. My entire working week is taken up with lecturing - with no time available for planning, preparation etc. Never mind - weeks go up and down. I just hope I don't burn out - and that means plenty of rest in between, as lectures just leave me feeling very tired at the moment.

It was something we discussed yesterday - the recovery time after chemotherapy. It's not like flicking a switch - it hangs around and is far from easy. Why hasn't anyone given clear guidance on this? Surely medical professionals know about these things - so why is it left wholly to the patient to sort it out? I'm all for patient representation, but the experts need to give clear and research based advice. To be honest, I'm not always sure how well I feel - just that I feel better than on treatment, and am now getting back many of my pre-treatment symptoms.

So - a week of moving forward, and more further along the runway to the start of the rest of our lives. Can't wait!!

Take care all.

Happy Awareness Day!

2006-10-01T08:53:00.000+01:00

Today is International Hepatitis Awareness Day. Over the last week, there has been plenty of media coverage - people on local radio around the country (wish I'd heard more of these), newspaper reports at national and local level, and coverage of events down in London.

My contribution has been an interview for Radio Derby, which I think went fairly well. I know that after my rather equivocal style in previous interviews, I was somewhat less diplomatic. I referred to my bitterness over going 20 years without a diagnosis, the lack of support from the NHS for so many people and the belief that the Department of Health campaign has been too little too late in comparison to other major health pushes. It's odd how I feel so much more confident to do this now, after treatment. I also referred to prejudice - and then went to work where I was involved in a lecture about social inclusion. I had always considered myself an inclusive person - but now, having been on the receiving end, I realise I'm not. The only way to appreciate prejudice is to endure it first hand - to have the experience of certain friends never getting in touch, to find decisions about your life taken out of your hands, and to feel the false sensitivity of people tip-toeing around what makes you different. It's no surprise people get defensive - at times to the point of aggression. It's also odd how similarities, when identified unite people. I feel a massively close affinity and trust with others with Hep C - but with others, that trust takes time to develop - there's always the question of how they will react when they know of my 'difference'. Once this is overcome, however, these people are equally true friends.

During this lecture, forms of bias were discussed - and the following definition of one form of bias was proposed:

Misinformation about a group, contribution or event. One of the most famous studies in education points up this type of bias. Teachers were given new students, all of average intelligence. However, some teachers were told that their pupils were above average intelligence, some were told their pupils were below average. At the end of the experiment, it was found that students who were expected to do very well, did very well and students expected to do poorly, did poorly.
This is precisely what happens with Hep C - inspired from Government level - misinformation about prevalence, transmission routes, treatment etc results in prejudice from medical professionals and the wider public. From a Government who bleated on so much about inclusion, it's high time they started to practise what they preach. More examples from the 'bias' list could be quoted and appear equally appropriate.
I also found out that a student on the course has been reading this blog! I guess that means more students are also looking. Great - and welcome! Hopefully you'll appreciate that I'm not just going senile, and those slips in lectures are excusable (like when I forgot the name of the National Curriculum and called it the 'Big Teachy Thingy'). I suppose I should be careful what I say ... but ... nah ...
As for the rest of the week, time was at a premium - I have been planning, preparing and organising for the next couple of weeks, and have ended up totally shattered. To put this in context, I have had blinding headaches on several days, have slept incredibly heavily during the evenings, and have now started to come out in red spots around my face, neck and chest - and elsewhere on my body. I've also lost 4lbs in weight since Tuesday. These are all pre-treatment symptoms, and I can't pretend I'm not concerned about them. I know they mean nothing, but the fact they exist brings back unpleasant memories.
Maybe it's just stress - after all, we exchange contracts on our new house tomorrow, and the thought of parting with money always brings me out in an allergic reaction.
During this time, Vicki continues to be unwell, and we have to get her test results on Wednesday. I really don't feel there's too much of a problem, but it'll be good to be reassured - and to have her on the mend. She's worked really hard this week, and hopefully the NHCN newsletter will be going out later today as a result of her diligence.
Yesterday, we went to see Vicki's brother's band perform. They were part of a day of live music at a working men's club in Leeds. In fact, I felt they (Blah Blah Tin is the name - no idea why!) were the best of the bands performing - certainly most creative and original, in a Lou Reed/The Fall style - and the whole day reminded me of my time as a student over 20 years ago. It reminded me why I don't do those sort of things any more! We left at about 8.45, and were just glad to be home. It wasn't a bad day - just too much of it - rather like the Leeds gyratory traffic system.
In summary, a busy week - and not the best in health terms. However, what did I expect?
Take care all
Nick

Generally raising awareness

2006-09-23T08:21:00.000+01:00

It's a week until International Hepatitis Awareness Day on 1st October.

Last year, this resulted in substantial media coverage on TV and in newspapers. This year, the date clashes with Breast Cancer awareness week. Clearly, both are incredibly important events - but why has no-one - especially the Department of Health - had an overview of major health awareness events? With foresight, these could have been staggered to ensure they get the attention they both deserve. Something as simple as sending out a calendar of fixed international/national date would achieve this - and one would hope that if the Health Service is generally committed to awareness raising, they would have these dates in their diaries.

Whatever - can't be changed now - so much of the Hepatitis awareness takes place over the next week.

There was an excellent article in the Sun this week, with good information and of sufficient size to get plenty of attention. Hopefully the article which Vicki and I were interviewed for will be in the Express on Tuesday, and I know that people have been contacted about local radio interviews and the possibility of TV interviews. It should be a good week for press watching.

The national awareness campaign (FaCeIt) also has events taking place across London this week.

Whoever decided on this approach, rather than focusing on the day itself for media coverage took an excellent decision. There will, inevitably be other activities on the day itself, but the build up should be really effective.

On a personal note, two new opportunities to raise awareness have come up. Firstly with an old acquaintance who works with victims of domestic violence, and secondly to speak with those who train health care professionals at the University. Both very valuable inroads.

Now we just have to hope that the press cover the facts accurately. I was delighted yesterday to find a really good (if not exhaustive) description of transmission routes:

Hepatitis C is spread by exposure to contaminated blood. Some mechanisms of exposure include the sharing of needles or other 'works' used in consuming drugs such as cocaine or heroin; use of contaminated equipment for activities such as body piercing and tattooing; occupational exposure of healthcare workers to used needles or other sharp objects; through sexual activity that results in tissue tears; from mother to baby during childbirth; or from cuts sustained during athletic or other activity. It is less common than hepatitis B as a cause of acute hepatitis but is the most common cause of chronic hepatitis. (http://www.labtestsonline.org/understanding/conditions/hep.html)

I am especially pleased to note the comment about sexual activity - finally, someone gets it right!! Anyone who has heard me on this issue before will know that I get sick to death of talk of 'sexual transmission', when research demonstrates that there is no such thing - http://www.hivandhepatitis.com/hep_c/news/2004/062104_c.html
I wonder why this myth is perpetuated?
I'm also currently trying to find the cost of mouth swab testing for Hep C, so that this can be promoted and developed into much wider screening through GPs and other health services.
I've gone all technical today. Wonder why?
The last week has been busy, mostly with work. I have been organising my timetable for the coming year, and it's odd that most of my current commitments fall in the period before Christmas - the time when I am still only working part-time. This balances out over the year, but it's now when I should be limiting my hours. I will probably be ok - but I just hope I don't burn out during this post-treatment period and end up needing time off. I have been very tired over the last couple of weeks, and have started my early evening sleeping again, and find myself feeling really unwell at times. On one day, I was shaking so badly at work that I had to avoid holding paper/pens in my hands where students could see.
And I'm still waiting for my final test date to come through. I think that will make a real difference to how I feel. It's now imminent and so plays on my mind a little more. I suppose waiting for the result after the test will be even worse. However, at least when we get to that point, there will be the chance to replan and move forward - whatever the result.
One pleasant feature this week was meeting two students who I taught when they were 10 and 11 years old. I had a really nice chat with them - and have warned them that I have a picture of them when they were in the school play which I directed - now I just need to scan it so that it can appear in lectures at some point (would I really embarrass them like that? - hmm). It's lovely to see former pupils doing so well.
Apart from this, Vicki has been unwell. She started being ill about a month ago, and still feels under the weather. We went to the doctor yesterday, and he was very good. I think we still feel that she has an infection of some sort, but as we have been on holiday recently, he is running a full screening just to be certain. Hopefully it's nothing serious, but we need to be careful. At least we know it isn't Hep C - she was tested for that a while ago.
What was really refreshing was the attitude of the GP - he listened, asked Vicki what she thought could be the problem, and paid real attention to her views and instincts. There was never any suggestion of 'fobbing her off' or 'come back in a week if you're no better' - I really felt he had the balance of professional expertise and listening to the patient right. I wonder how many Hep C patients would have been diagnosed and treated sooner if their GPs took this approach.
I can't really think of anything amusing that happened this week (other than the student at Derby Museum who spent ages commenting on how life like a dummy in one of the displays was - until the 'dummy' turned round and smiled at her). Although I did call Nat West credit cards this week. They had reduced my credit limit on two grounds - I missed a payment when in hospital with appendicitis, and I haven't used the full limit on my card. How absurd is that? Get yourself massively in to debt by 'maxing out' the card, or the limit isn't there for when it's needed - like when we move house in the near future. Apparently, they are doing this on many cards - so if you're with Nat West (or any other Bank of Scotland minions), get spending quick!! As soon as we move, I shall be clearing the card and transferring all my business from Nat West. I'd feel safer with my money under the mattress than with these financial sharks. Oh - and by the way, their customer support managers don't talk to customers!! Nice to know they're in touch with customer needs.
Anyway - a good rant today - hopefully next time will be reflecting on all the really good publicity generated next week. Hopefully next year, the National Hepatitis C Network will be working alongside the Hep C Trust and the FaCeIt campaign to develop nationwide events.
Hope everyone is doing well.
Take care.
Nick

Perpetual motion

2006-09-17T08:25:00.000+01:00

I usually try to post about once a week, but this week it just hasn't happened. It's not a lack of desire on my part - I have set aside time on two or three occasions, but other things have got in the way.

The main problems have been work and toothache.

Throughout my treatment, my dentist has been wonderful, giving me more frequent check-ups, due to the mouth sores from which I suffered, but leaving any significant work, as we both felt I had enough to cope with. This week, one of the temporary fillings finally came away (I suspect the culprit was a mint eaten on the way to the Robbie Williams concert last weekend). I spent several days taking increasingly strong pain killers, and lost 3 nights' sleep before arranging an emergency appointment. Yesterday, I finally got some proper relief. I just hope it lasts.

Throughout this, work has started up properly as students begin to arrive and courses get under way. I have worked comfortably above my current part-time hours, and need to be careful what I take on. It's just one of those times of year. In general, I don't mind too much - but Thursday's 12 hour day was a bit much, and I suffered when I got home. In fact, this is the first week since I started treatment when we simply haven't bothered to go to the pub quiz.

I suppose an indication of how tired I've been might be the fact that I drove straight through a red light (thankfully nothing was coming) yesterday morning. Not good!

In amongst all this, Vicki and I have been trying to get things moving with the National Hepatitis C Network. There have been many supportive letters, but it is a sad fact that many people have health problems which make it difficult to commit. I can empathise. During my treatment, I experienced exactly the same - it's no coincidence that since finishing, Vicki and I have got engaged, we have bought a house and have become far more active in NHCN work. This is probably down to two factors - uncertainty over which way treatment is going to lead from week to week, and the psychological insecurity from not knowing the outcome. Of course, I still don't know the outcome, but it is far easier to keep things in perspective without medication in my system.

Developing that point, I've said several times over this last week that I've only just started to realise how unwell I really was during treatment. I know I felt lousy, but I also experienced a spiral of low confidence, based on my unwillingness to take longer term decisions, which resulted in a low psychological state. I also recognise how wonderful Vicki was from this point of view. Without her, I would probably have simply stopped. I think people who know me are starting to notice a major change in my personality and general 'sharpness' - let's just hope it's for the better.

As well as this, there have been other changes - my hair is becoming thicker and small spots which have been on the backs of my hands for years have disappeared. I'm also back to my 'during treatment' weight, having lost several pounds immediately after finishing.

Now, I have a determination not to forget the years of ill health I tolerated (not to mention the liver damage I am left with) as a result of failure to diagnose my condition, appalling professional practice prior to changing hospital and the prejudice I have suffered - those changes which have been forced on me as a direct result of illness. Hep C awareness is now, and will remain, an important part of my life. I am determined that the National Hep C Network will move forward, developing its scope of influence, and I will play whatever role is necessary. I will also maintain my media work - Vicki and I should be in the Daily Express this week, and I am due to participate in radio interviews in the week running up to International Awareness Day on October 1. We also plan to go to London for one of the events during that week. Hopefully this visit will also encompass an important meeting, and I'm just waiting to find out what events are on, and how the time in London can be spent to maximum benefit.

And to top it all, Vicki has felt unwell - we suspect she may be anaemic and are making sure she gets plenty of iron etc - just in case. It currently takes over a week to get an appointment at our GP, so she is going on Friday. I just hope he will not fob her off, but ensure that he carries out appropriate tests just so that nothing is missed. At least she had a Hep C test very recently, so we know it isn't that!

Post-treatment is an odd time. No closure - just a realisation of what's happened over the previous years,and a realisation that the need to rebuild is far greater than originally thought - not just the need to get myself back to normal, but a need to work damned hard to right the wrongs done by others during that time. It's a real eye-opener.

So - plenty to be going on with.

Take care all.

Things in motion

2006-09-08T07:37:00.000+01:00

I should have posted this a few days ago, but simply haven't had time.

It's been a busy week, and with post-treatment side effects, the work/rest balance has been difficult. Most of the time I have felt shattered - not helped by sleeping badly, headaches and a pain in my right shoulder which I initially thought was a result of sleeping strangely, but now, 2 weeks on, I am sure is just one more side effect. It was bad enough to make me wince when I put my arm around Vicki for some photographs for the Daily Express. However, though feeling rather off colour and generally crap, I'm so much better than on treatment. Looking back now, I realise how unwell I really was at that time, and responses from others support that. A work colleague said how well I was looking - for me at any rate - and for the first time in ages, I believed it.

I suppose there have been three major highlights this week.

Firstly a meeting with representatives from Shering Plough and Roche to discuss future funding for the National Hepatitis C Network. This went as well as could have been hoped. There was an agreement to fund a small steering group to establish an action plan and general organisational principles for the network, with an agreement in principle that if the outcome of this is acceptable, future funding will be forthcoming. I suppose some people may feel uncomfortable with major multi-national companies backing such an organisation - however, our aims are the same even if our desired outcomes are rather different. NHCN wants to raise awareness, support patients and carers and ensure that people with Hep C get access to testing and treatment. The companies want to sell their products. If this means more patients recovering from Hep C and eradicating the virus, I have no problem with that. Additionally, a raising of the profile of Hep C and more people getting the treatment they need will result in further research into new treatments, and this can only benefit those for whom treatment has been unsuccessful.

Further than that, it develops links between the whole Hep C community - patients, carers, Hep C Trust, Department of Health awareness campaign, medical professionals and the pharmaceutical companies - a group which has the potential to lobby very effectively to ensure that Hep C is brought out of the shadows. These working relationships could be extremely valuable.

If anyone reading this would like to know more about NHCN, or would like to become active, please e-mail me and you can be added to a mailing list.

Second major event of the week has been returning to work. Having felt utterly out on a limb last year, it feels good to be back and getting involved. This week has consisted of office re-organisation, meetings, a bit of marking, diary preparation and generally getting organised. Next week is more of the same, then - the deluge! At least I now know my diary dates for the next year (although there are sure to be many additions.

One big change was that I felt able to connect with what was happening. Last year, things had drifted past me, and I really didn't fully comprehend what was happening. Currently, I'm preferring to take a back seat and just learn about changes, but I know what's going on and am not in a state of total confusion. It's rather like being a new member of staff - but I feel that will change quickly. The good thing is, I feel able to commit to being available. Last year always seemed to need a contingency plan - this year, apart from a couple of medical visits which are yet to be arranged, I feel confident that I will be able to fulfill all my responsibilities. Currently, after half a day at work, I'm still tired and need to sleep later - not to mention awful headaches, but I know this will improve over the next couple of months.

The third major event was the taking of photographs for the Daily Express to go with an interview which I did recently. Hopefully this will be in the paper next week - I believe Tuesday is 'health' day, so it's probably worth checking the paper then.

Oh - and just to round things off, I called the estate agents about our house purchase. Contracts are ready, we've been asked for the money, so we're nearly there! Problem is, some money owed to me through a court order has not yet been paid and is several months overdue. This is because of prevarication by solicitors, insistence by Nat West bank that they will only use their own solicitors and what I consider to be general time wasting in order to secure higher payments for their greedy, bloated selves. It's despicable that these financial and legal vultures can show such contempt for a court order. If it was a member of the public, they would be in court for non-payment and being fined as well. I should add that no blame is attached to the person who owes the money, nor to my solicitor. It's just a farcical, shambolic system.

However, threats have been made, and I expect things to be resolved without influencing the house purchase - even if I need to borrow the money using the court order as a guarantee. It's just bloody annoying.

So, that's the highlights - you'll be relieved to know I left out the dull bits (like my half hour of puns on the theme of fish, which really irritated Vicki - she has no sole! - and many similar, until I was knocked off my perch while singing 'Shark the Herald Angelfish Sing' - it must be the piece of cod which passeth all understanding. In pike of everything, we're now breaming with happiness again).

Hope everyone is doing well

Take care

Taking its toll

2006-09-02T10:47:00.000+01:00

Having felt very upbeat over the changes in side effects since finishing treatment, I can't be so positive this week.

In fact, it's been quite rough. I have slept during the afternoon on several days, and my limbs have developed a leaden heaviness which is making simple tasks far more difficult. In fact, my joint pains have been quite sharp and severe - especially in my right shoulder, knee and ankle (why is it always my right side?). There are a lot of emotional ups and downs as well - more like I'd expected from 'riba rage' than. I'm also sleeping badly at nights - oddly, I'm finding it too quiet to sleep at night - it simply starts my mind ticking over and creating background noise to fill the silence. While Vicki mowed the lawns the other day, I sat on the sofa and did nothing - similar to when she cooked dinner, and I again just sat. After going in to work on Thursday morning to move offices (to next door), which involved moving files into crates about 2 feet away, I was shattered - physically and mentally, and don't seem to have recovered really.

I've also been trying to sort out my timetable for work, but can't just yet - I'm not happy with changes in my role, and this will inevitably impact on future decisions - making some, which may have been difficult, far easier. It's annoying to know that this is a direct result of treatment and ill health - on the other hand, these same factors may open new doors in the future.

Interestingly, this role change was attributed to my appendix operation and the time off I needed then. Still, I'll keep ticking over and do my best for the students.

This week seems to have focused around weddings. I kept walking in on Vicki looking at venues and dresses. Then I heard from two former students who have just married, and yesterday we went to a wedding. It was nice. Plenty of ideas for our marriage - mainly things I don't want. I've never been big on pomp and ceremony - nor do I see weddings as an excuse to get drunk and for people to lose all dignity (amazing how absurd it looks to someone who is sober). I'm trying to think of something different for our wedding - the problem is finding something which is going to cause the fewest problems for all those present. I also want to make sure that when we marry, I spend the day with Vicki, not being shoved from pillar to post so that the whole thing becomes a blur - our day will be our day!

Next week, we are going to be discussing funding for the National Hep C Network and visiting friends in Essex. Hopefully, this means a chance to move things forward and establish the Network as a valuable pressure and support group. Later in the week, we're off to see Robbie Williams in Leeds - maybe I'll wear my Hep C Trust t-shirt and see if he recognises it.

Meanwhile, Vicki will be busy on her counselling course - the materials arrived about half an hour ago, and will be a surprise for her when she wakes up.

So - life still goes on - and things are broadly better than while I was on treatment. No real surprises, but I had convinced myself that all the post - treatment sides I had heard of were not going to transpire. Oh well!

Hope everyone's doing ok.

Take care

Just some bits of news

2006-08-28T07:53:00.000+01:00

At last - here are the pics of the place where I proposed, and Vicki's reaction!

Over the last few days, I've felt quite tired, but still a big improvement on treatment. I've also noticed some of the post-treatment emotional ups and downs. To some extent, I have been in denial over this, putting it down to tiredness, stress relating to moving house etc. It was only when I started to read comments from others on the forum that I realised that this is part of the post-treatment side effects. Again, nothing too serious - just rather down and with no explanation or justification. However, it's improving all the time, just something to recognise and work through.

On Saturday morning, I was interviewed for the Daily Express. It was quite a deep and searching interview, and the journalist was kind enough to send me a copy of the draft article. On the whole, I am very pleased with it - a couple of minor amendments - she had quoted injecting drug users as a small percentage of those with Hep C - oops - they're actually a significant percentage (though I suspect proper screening would reduce this and make the risks to others more evident). There was also the old chestnut of sexual transmission, and something about risks to unborn babies. However, I have replied and corrected these points. I suspect the misunderstanding was down to the telephone interview, and probably my fault. I will post on here when I know when it will appear in print - we have to wait for a photographer to come and take our picture some time (have to do my hair and make myself look a little less hideous again - Vicki's ok - she always looks gorgeous). I'm hoping the article will appear before I go to discuss funding for the National Hep C Network next week - it may be useful.

During the interview, I once again referred to the need for a high profile public figure to raise awareness. Particularly to the fact that Robbie Williams is patron of the Hep C Trust, but that this is not recognised at all on his website (though many other charities he supports are), nor am I aware that he has campaigned in any way to raise Hep C awareness. Vicki and I are going to his concert on Sept 8 in Leeds - it would be great to hear a mention for Hep C. I suspect it won't happen. Disappointing.

Yesterday was really enjoyable. We met up with someone who had contacted me via this blog. This person has Hep C, and is due to start treatment soon. I remember when I first got my diagnosis, how isolated I felt, and how uplifting it was to meet people like Ron and Michele when I went for photographs for the FaceIt campaign. Just the sharing of experiences was so refreshing - to know I wasn't some kind of freak. Since then, of course, I've met many other patients and know that for a hepper, I'm fairly normal - well - as normal as we get anyway. It is so unfortunate that no similar support is offered for patients when diagnosed.

We enjoyed a lovely lunch and long chat with her and her husband, and I just hope it didn't scare her too much. I also hope they felt less alone and more able to share the experiences they will undergo. Above all, I hope they know that there is support, and they only need to ask for it.

Finally, I was very sad to read in the Hep C Trust Newsletter about the death of Nimrod Ping. Vicki and I only met Nimrod once, in Brighton at the Face It event, but were aware of his passion and determination to raise awareness of Hep C. He was a charming, pleasant man whose openness was highly commendable. Talking to local residents, we became aware that he was something of a local celebrity in Brighton, and had a high public profile. If only more people in the public eye had the courage to step forward and be part of major campaigns.

Perhaps I should also mention that the Trust newsletter asked for people to be involved with media work etc on the International Awareness Day, coming up soon. Anyone who doesn't get the newsletter but would be willing to participate should contact the Trust via the links on the right.

Hope everyone is doing well.

Take care

Return to normality

2006-08-23T10:07:00.000+01:00

Finally, after all our travels, we have managed to get home and sleep in our bed - and no plans to be away for the immediate future (well - until we move house anyway).

Wales was wonderful - but I do wonder if they turn a tap on at the border. Just as we left England, the rain started, and only stopped on the second day - which was wonderful, as that was the day when we went to remember Vicki's parents. It was an odd event. Last year was her first visit there in 16 years and was very emotional. This year was different. Firstly, we are now far more stable in our lives (last time was April last year, before we were living together), and I feel that Vicki got the grieving out of her system. This time was less emotional - more of a chance to connect, leave some flowers and a note for them and simply acknowledge that they are still an important part of her life.

She has also arranged for a memorial bench to be placed there. It was a very positive experience.

I'm trying to work out exactly how much of my current ill health is down to post-treatment side effects, and how much a result of being tired after travelling.

In short, there are some aspects of life when I feel much healthier - more general energy, better social skills, tripping up on words less regularly, and - as Vicki put it - more 'vigorous'. I noticed in particular that when meeting her grandmother, I felt far more able to chat and interact with her - she noticed the difference too, and commented to Vicki on the phone yesterday. Gran was 99 yesterday - I'll be amazed if I look that good at 70 (in fact, I don't look that good some days now!).

However, there are other issues - pre-treatment symptoms which seem to be returning. Notably, my digestive system. I've lost several pounds (5 or 6 at least), and let's just say that things don't always run smoothly. I'm also getting skin problems on my face and am sleeping badly - yesterday, I was up watching TV at 4.00, and up for the day at 6.00. I'm putting down to either post holiday effects, or the fact that my liver is having to do its job again, or post-medication withdrawal symptoms - and probably all three. Only to be expected I suppose, but I'd rather be without them as we're waiting nervously on my PCR test any day now (it was 4 weeks yesterday).

Yesterday was a settling, sorting and organising day - Vicki enrolled on two counselling courses - a general one and one specifically relating to domestic violence, we checked how things are going with the house purchase, and highlight of the day was when I called CIS Insurance to ask why I had been refused Life Assurance. Obviously, I know why - but wanted to hear their reasons, especially why they won't review for a year when my SVR test is in 3 months. It was an intriguing discussion, with someone who openly admitted that he had no idea what he was talking about. I requested a copy of my medical report - they haven't taken one up. I asked who had given them medical information about the condition, pointing out that any general doctor was likely to be very ill-informed. I was told no medical information had been sought. I then asked whyHep C is not referred to in their critical illness list as insured under critical illness cover - surely if it's bad enough not to give life assurance, it must be severe enough to qualify for a critical illness payout. Apparently it would be too difficult to list all the illnesses which result in refusal of life assurance - so why, then, can they list all the critical illnesses covered? Surely the same list could apply to both? I also asked about the 1 year deferral when I will know if the virus is clear in 3 months. Apparently it's just to let things 'pan out'. Bollocks! Cutting a long story short, those I spoke to didn't have a clue what they were doing, and I'm waiting on a call back from someone over the next day or two, when my form has been sorted. Apparently, the information sent by the agent who set it up, which he produced on computer and presumably mailed electronically is not adequate - how intriguing - I wonder what else they have in the forms that I don't know about ... could there be a personal privacy issue, I wonder? Vicki enjoyed the phone call - I think she likes the way I simply repeat questions when the answer is inadequate and challenge 'accepted' practices which I find unacceptable - oh, and my habit of summing issues up - eg not covering Hep C under critical illness, but refusing life assurance amounts to 'double standards' and 'having your cake and eating it', while not taking medical advice means that offering insurance means taking money with no risks attached - money for old rope. I also asked how they could promote people protecting themselves against risks, when they take none - as I suspect their profits will reflect!

Then we went shopping - no, not another supermarket rage story - just needed to buy half the shop to restock cupboards.

Then home - I tidied up inside, as we had simply dumped everything after Egypt, while Vicki mowed the lawns which were about knee high.

So we're back to normal. A bit tense about the PCR, but very positive - I think getting home has given us more time to think about it and it's impending arrival. Whatever. We're really positive about it, but want to hear the magic word 'negative'.

That's about it for now. I received a lovely e-mail today from another person with Hep C, and I'll contact her later - it makes blogging so worthwhile - especially if it can be of help and support to others.

Take care everyone.

PS - still can't upload pictures - I'll keep trying!

Temples, tombs, tipping and life insurance

2006-08-18T06:52:00.000+01:00

Back again - just for the day, then off to Stratford tonight (a nice bit of Shakespeare - The Tempest - my favourite), then North Wales for 2 nights. Followed by normality - till we move house!

After my last 'mysterious' post, some explanations needed. We actually went to Egypt, cruising down the Nile from Luxor to Aswan. A blend of historical visits and relaxation on the boat. Wonderful! Egypt is such a fascinating country to visit. A culture so entirely different from our own, with magnificent ancient glories (I can't believe I will ever see anything man-made which will top Abu Simbel - and I've seen the pyramids), modern and traditional clashes (mud-brick houses with satellite dishes) and a blend of opulence and subsistence living.

Being British, I was brought up to believe that 'thank you' costs nothing. In Egypt it does, with tips required for every slight action and to almost everyone. Having said that, many were glad of a tip valuing less than 50p, so it was hardly expensive - in fact, it can save money! At an alabaster workshop, Vicki was amused as the salesman and I sat on the floor, lit cigarettes and began to bargain. Eventually, I got his price down by £50 (about two thirds of his starting point), including a tip for him which never went through the till - what would the taxman say? He offered me 2 million camels for Vicki as well. I opened negotiations at 6 million, but he said for that for that he wanted a Ferrari as well. I suggested a Honda Civic, but he wasn't impressed.

We visited temples, tombs, sound and light shows, Egyptian evenings; we cruised up and down the Nile and blended energy sapping visits (it was over 40 degrees every day and over 50 at Abu Simbel) with total relaxation on the boat. On our final day, we even had a balloon ride over the Valley of the Kings, getting up at 4am and watching the sun rise from 2,500 feet. Awesome.

We have holiday pics to bore even the most ardent of photo lovers, and souvenirs which will eventually turn our new home into some form of glorified bazar.

Yes we had a wonderful time.

The main highlight however was on the first day at Karnak Temple, where we walked around the ancient statue of a scarab (a ritual meaning that you wish to marry), strolled the few yards to the sacred lake, and I went down on one knee and proposed. I had bought another ring before leaving for the event, as the 'real' one still hasn't arrived, so Vicki was amazed. She said 'yes', and got very giggly and breathles. I was just in pain - I had forgotten how hot the ground would be, and still have the red burn mark on my knee. Suffice to say, her face was a picture - so I took one! (Edit - sorry, pics don't seem to be uploading on here right now. I'll try again later).

We got back about 4.30 am yesterday, after our flight was delayed, and had rather a shock.

We had received a letter, saying that my life insurance had been declined. Odd really, you reach the end of treatment, expecting and hoping to be clear of the virus, and have to put up with this sort of thing. My anger was almost tangible. Not least, as I will have my final test in a couple of months, and could then be declared clear of Hep C. I could understand a delay till then, or an addition to the premiums, but not being told that I have to wait for a year to re-apply.

What made it so awful was that I had been given the impression by the financial agent with whom I deal that the mortgage was conditional on my having life insurance.

I barely slept, and was up at 8.30 to do battle with the company (Co-operative Insurance Services).

However, in a moment of insight, I decided to do the positive thing first, and called a financial adviser recommended to me by the Hep C Trust. She was wonderful. She told me to look at the mortgage conditions, as life insurance is rarely one of the conditions now. I did - and it wasn't there. So I called the company to check - and indeed, although strongly advised, life insurance is not a condition of the mortgage. So - at least the house purchase isn't jeopardised. It was odd though. When I spoke to the adviser, she asked me about the condition of my liver - an understandable question - and then asked how I got Hep C. I can only assume from this that this is a consideration for insurance companies, based on an assumption. One more example of prejudice - and a prejudice fuelled by Department of Health propaganda about Hep C.

I now plan to call the company who refused me and ask for their precise reasons - and as they record calls from clients, I see no reason why I shouldn't record their responses. It'll be interesting, and a lot of fun.

However - no harm done, house purchase going ahead, and we are incredibly relieved.

So how about post-treatment side effects? It's hard to tell really. I know I feel better than when I was on treatment - I only occasionally have an afternoon nap now - but I still feel tired, get increasing number of stomach pains, am losing weight and am generally just rather 'off'. Maybe it's down to hot weather and busy days - I suspect I won't really know until we settle at home and get back to routines. I have noticed that at times I am incredibly irritable, and feel as if I have an aura of anger around me (some Egyptian street sellers who got over pushy may have noticed - although more sensitive ones just gave me a wide berth). It's not like me at all, and is something I haven't experienced up to know. I just need to direct it at the right people - solicitors, estate agents, insurance companies, the miserable old hag two doors up the road and the Department of Health, human resources and car park managers. Basically anyone whose purpose in life is to bleed money and happiness from individuals. Hmm ... have I got cynical? Again, maybe down to not having settled into normality since finishing treatment, but it needs watching. One significant issue is insomnia. I've always got up early, but this is becoming more of an issue at the moment, and also a bit of a concern - I can only keep going for so long.

And tomorrow, off to Wales. It's an important pilgrimmage to the place where Vicki lost her parents seventeen years ago. Not long ago, we ordered newspapers from the day after the event (19 August 1989), and I found it almost inconceivable that the cuttings from the News of the World and Sunday Mirror were referring to Vicki when they mention the 10 year old daughter who witnessed the whole tragedy. I know it will be emotionally difficult, and all I can do is be there and support. Vicki has spent over a year doing that for me, and being so magnificently, I just hope for those few hours, I can do as wonderful a job as she has. She will soon be starting training as a counsellor, and this, allied to her experience with bereavement, domestic violence and Hep C will make her magnificent in that line of work.

When we get back, it's back to normality - preparing for work, getting started on developing the National Hep C Network and being myself again. Always with that little cloud on the horizon, coming ever closer, which will tell me whether Hep C has become a part of my past or is still in my present. It will always be part of my future.

So - take care all - and see you soon.

More holidays!!

2006-08-08T15:02:00.000+01:00

Firstly, a photo of us in Mauritius, visiting the sacred lake of the Hindus - being watched over by the God of Music and Goddess of Love.

After a week at home, we're off again tomorrow. This time, I can't say where - it's a surprise! She knows it's between the canals of Birmingham (Venice of the Midlands), Filey (and going to see Derby play Hull on Saturday), or Butlins (with live entertainment from The Krankies). She's so excited there's no controlling her! Personally, I think she's very lucky - any of those holidays would be wonderful.

In fact, she hasn't felt well since we got back, and we had a trip to the doctor yesterday morning, where she was diagnosed with labyrinthitis (inner-ear problem), and has got antibiotics. She seems better in herself now, so hopefully it won't detract from the glories of Gas Street Basin in Birmingham (what an image that name conjures up).

As for me, post-treatment side effects are certainly present - headaches, tiredness, abdominal pain etc. However, there are improvements - no afternoon naps, although at times I probably should have them - not least as I'm tending to wake up very early in the morning. I also noticed that I was going upstairs without using a hand rail on occasions. My injection site marks and appendix scar are also receding. On holiday, there were 5 distinct injection sites, there are only 3 left now. On the whole, much better than on treatment, with the main boost being the simple psychological fact of finishing. I suspect that some of the brain fog is also lifting, although I still feel distinctly dull-headed. Despite this, our team came second in the quiz last night.

So - it's off again first thing tomorrow, back for a day next week, then away again for a couple of days. After that, feet up, relax until we move house - which seems likely to be sooner rather than later. I think we may then hibernate!

Hope everyone is having a good time - take care!

9 days later

2006-08-04T17:13:00.000+01:00

Well - we're back from holiday.

We got home at about 10.30 last night having been up since the absurdly early hours of the morning, and we're just about settling into a normal routine.

The holiday was marvellous - relaxing, stimulating and a great chance to meet people from different cultures. Mauritius is wonderful for that, consisting of mainly Hindus with a substantial number of Creole people, along with Moslems, Franco Mauritians and Chinese. It's a blend which seems to work really well, with each culture respecting the others, but in an integrated and open manner. I suppose there are tensions beneath the surface, but somehow everyone seemed so much more respectful than some over here in the UK.

We enjoyed so many experiences - seeing dolphins in their natural environment, visiting the sacred lake of the Hindus, under sea walking, snorkelling, a submarine at 35 metres, and so much besides. A holiday I would recommend to anyone.

One slight hiccup (which was followed by an even less pleasant outcome) was Vicki's first experience of a full seafood platter. I was just amazed it wasn't me, as we ate marlin, crab, prawns, lobster, oysters etc. I had never had oysters before, and found them vile (why are so many great delicacies foul?). That hideous, slimy taste, followed by the salty slime left me unsure whether to spit or swallow. I was brave - but regret it! Vicki was up half the night being violently sick, and we were not happy when our transport for the next day arrived an hour early. However, she rallied, and although still delicate, enjoyed the day on a catamaran and the rest of the holiday.

I finished my ribavirin today, so that's all my treatment done - and it feels good. On holiday, we were undoubtedly influenced by my final lot of side effects. However, most days consisted of doing 'something' - either an excursion or activities which we organised ourselves - and the rest of the time was spent idling on the bed, watching Mauritian TV (in French). It was wonderful. Exactly the right balance of doing and resting - helped by a wonderful hotel owner, who could not have been more helpful and welcoming. He had time to chat about everything - football, politics, religion, the weather etc etc. So fascinating to get a Mauritian/Indian perspective on matters which we tend to see from an Anglo-American point of view.

Side effects have been odd to gauge. I was certainly very tired, and my skin is very, very sensitive to the sun, as are my eyes, and it was tricky to work out what was side effects, and what was just the typical impact of sun, sea, sand and travel. Maybe next week will give a better insight, when we're off again - this time to ... but I'm not saying where - it's a surprise for Vicki to thank her for all her support this year, so more of that when we come back again.

I think my most obvious side effects were yesterday, when I certainly felt distinctly 'tetchy' and very light headed and under the weather. There again, maybe that was down to a really poor flight and eating the recycled school dinners which British Airways pass off as acceptable food.

Today is, of course, my first side effect free Friday for a year. I've been awake all day so far - in fact, since about 5am - probably still on Mauritian time. However, although my sleep was generally excellent while on holiday, there was the one bad night sitting up with Vicki, and some interruptions from a small, but very cute, gecko who decided to share our room.

It's impossible to resist commenting on a couple of 'health related' features from the holiday - firstly, a very good AIDS/HIV awareness campaign in Mauritius, featuring huge posters on hordings, and secondly an intriguing South African TV programme about gastroenterological health issues. It got me thinking about how low the general profile of such conditions is in the UK. We hear plenty about heart problems, sexual health, various cancers, obesity, salt, excess sun etc, but rarely see much about ulcers, viral and non-viral hepatitis (a very effectively made distinction), Crohns disease, bowel cancer etc. It was refreshing to hear an open and frank discussion about things which many have heard of, but know very little about. It's time this was put right - I remember lying in hospital after my appendix op, talking to the man with terminal bowel cancer opposite me. He commented that medication is available which might give him a chance of survival - but no-one makes enough noise to make the NHS use it - as he said, 'bowel cancer just isn't sexy'.

So - we're home again now. The cats are delighted to see us, and we're relaxing and resting. No question that I still don't feel wonderful, but psychologically, the thought of finishing treatment is a massive boost - only slightly tempered by the letter from the hospital asking me to go for an ultra-sound scan in 2 weeks. For now, I'm just going to enjoy the buzz of not taking tablets, not injecting and not losing entire weekends to side effects.

Finally, thanks to all for the congratulations and good wishes. It has been great reading so many lovely comments from so many people - not just here, but on the Hep C forum as well and in e-mails.

Hope everyone is doing well.

Take care.

Final Countdown

2006-07-25T08:04:00.000+01:00

That last day has finally dawned. It's a huge relief - I never thought I'd get this far - especially before changing hospitals. At that stage, I was given the impression that I was simply 'not suitable' for treatment, and twice had treatment stopped due to relatively minor fluctuations in blood readings, and a consultant who wouldn't treat without anti-depressants. I now know that he was wrong. I have almost completed my treatment, it has been manageable, though difficult, and I can start to look to the future with a new zeal and zest for life, with different eyes, and with a grim determination to make sure that what I do henceforth is making a difference - even if it's just to one person.

I also have a new respect for life. Finding out about Hep C was probably my first realisation of my own mortality and fragility and makes me determined to appreciate every second.

Of course, it isn't all over just yet - I still have a weeks worth of ribavirin tablets, am acutely aware that finishing treatment isn't like flicking a switch and I am likely to have a recovery period after finishing, and that I still need to wait 3 months to have my final SVR test to find out if I have cleared the virus completely. Whatever, today is a red letter day and I plan to appreciate it for what it is.

So - never again will I call Vicki (she's sat with me for every single injection - I like to have her with me), get the syringe out and settle back in the chair and steel myself for that small amount of pain as the needle goes in - a point at which I normally think 'I hope this isn't a total waste of time'. I shan't need constant reminders to get the jab done, as I wash up, tidy bits of paper, eat food and generally find an excuse not to inject myself any earlier than necessary. I really have hated the injection process, but if it hasn't worked this time, would happily do it all again tomorrow.

Oddly, my own health problems have made me more aware of other people's needs. I have developed a far deeper understanding of the emotional and physical stresses of long term illness, I am thankful that I do not have something much worse to contend with, I have got to know, and I hope understand, how and why some people become addicts or use drugs at challenging times in their lives, I can relate to the feeling of 'being thick' - the knowledge that my brain works, but I simply cannot call up the words or information which I want and I know what people mean when they say they can't cope - it's not a simple case of giving them a good kick up the backside and saying 'pull yourself together'.

These are things I never want to forget or lose in my life - if only everyone had the chance to see the world through different eyes for a while - it could only be a good thing.

So - a couple of days, and that will be my last post-jab side effects, and Fridays will no longer be a total write-off (nor will every other day of the week on some occasions!).

It's odd also, how many things I've actually done, and which to me are significant achievements, as a result of getting Hep C. There's been the FaCeIt campaign, the media work, my picture 3m high in cities across the UK, bits I've done to support the work of the Hep C Trust, the education project which Vicki and I have worked on, which so far has reached over 300 children, and probably a thousand people in total, the wonderful 'virtual' friendships through the Hep C Forum, and the real friendships forged in adversity through links made with others working to promote awareness. There has been the dawning of the National Hepatitis C Network - an organisation in its infancy, but with huge potential to develop into something genuinely significant. Finally, I received yesterday a copy of a book written by a friend in the US, for which I have written the foreword (unwittingly - she contacted me via this blog and asked for comments on the book, when I responded, she asked if they could be used as a foreword - I am very flattered!). More of the book another time - I am waiting for a promotional e-mail to arrive, which I will forward. For more information, visit www.hepatitiscempowered.org/left_nav/through_a_patients_eyes/

Odd to have done so much - and it's in no small part down to the support which I've had. My family have been great - tolerant of my bad days and accepting of what I do. They have given me lifts when I haven't felt up to driving, phoned up 'for a chat' regularly, and tolerated my pointless drivelling on about Hep C and the politics of healthcare. My friends (especially at the cricket club), who have accepted my absence, and been so willing to talk and understand that I am simply not the person I was before. Likewise neighbours, who never knew me without Hep C, but as it's become obvious that there are times when I'm not well, have, once again, always been there - caring for the cats when I was rushed off to hospital, putting the bins away on bin day and helping when necessary. There have also been work colleagues - those in my immediate work team, who have done extra work to cover for me, been tolerant and supportive and accepted that I cannot be as effective or efficient as previously.

Hmm ... if I ever win an Oscar, at least the speech will be written. Just a couple more...

The staff I was in contact with at my first hospital were poor, ignorant and prejudiced. However, since moving to the QMC in Nottingham, I have enjoyed wonderful treatment. A knowledgeable and committed consultant, nurses of whom I could not have asked more - constantly available on the end of a telephone, giving their time and expertise to get me through and offer advice - even coming up to the ward when I had my appendix out to advise staff there. They have been magnificent - if more teams offered this quality, I believe that success rates of treatment would significantly improve.

Now then ... anyone else? Oh yes! I have deliberately left Vicki until last. She has been wonderful. She has supported me, tolerated me, tried to understand me, taken over when I'm not able to go on - she has been everything to me. Above all, she's positive, she's encouraged me at bad times and shared all the good times - she also knows when to leave me with my introspective thoughts and accepts mood changes and silence as part of what I have been over the last year. I can't thank her enough, and nothing makes me happier than to look to our future together, hoping that she will agree to marry me (when I find a chance to ask her!) and wishing for a wonderful life with our family - when that happens. On the other hand, maybe when I'm off treatment and normal again, she'll find that I'm a complete git - I don't know, I can't remember, and she's never known me without Hep C. Suffice to say, I can't thank her enough, love her dearly and just hope I can go some way to repaying all that she has done for me.

Well - that's the speech - hope I didn't miss anyone - but I thought I'd do it now, as my next post will probably be when I get my final PCR results in a week or so, and while this won't alter the level of thanks due to everyone, I don't know how I'll feel about that at the time.

And so - off on holiday.

There's so much more I could say - I've been awake since 5.30 with my mind buzzing - but I know you all have lives to lead!

Take care everyone.

Slight amendment

2006-07-21T17:42:00.000+01:00

Just to let people know that the filming of my injection yesterday went well - however, it won't be broadcast just yet.

The reporter plans to use this along with earlier footage from when I was at the Face It event in Nottingham, and another piece when I discover if I have actually cleared the virus.

This will be a much more substantial piece than is often used on the news, which is great, and will be broadcast probably in October/November.

Feeling rough today after my jab, so that's it for now!

New beginnings

2006-07-20T12:31:00.000+01:00

As treatment nears the end, we're looking forward to major new beginnings.

Today will be my last injection at home on a Thursday - being made memorable as BBC East Midlands will be here to film it. On the whole, it's a year I will happily put behind me - but it will be good to have it on film, just as a reminder of my typical routine. It could also become very easy to forget it all, but I don't think that's right - it's good to be able to recall the bad times as well as the good.

I still have to do one more injection, but as we're off on holiday next Wednesday, and one needle was faulty, I am going to the hospital on Tuesday to do my last jab and have my final PCR. Then flying off to the sun for a week - sadly with my last load of side effects, but never mind.

Vicki is just refilling my pill box for the penultimate time, and has taken great pleasure in throwing away the Rebetol box, leaving just a couple of blister packs for the final week. I don't know how she will fill her days now that she's redundant from this particular job - I'm sure she'll cope!

The weather over the last few days has been awful - I don't like heat. My skin seems ultra-sensitive, my eyes are very sore and energy is non-existent. Still - I think most people have suffered with 35 degree temperatures. I just know that I have suffered more this year than I ever have before - even with 36 degree heat in Mexico last year and 45 degrees in Egypt. We can't wait to get to Mauritius next week and enjoy the pleasant 24 degrees which is expected at this time of year.

I mentioned new beginnings earlier, and having mentioned the significant ending, this is becoming a very life-changing time. As mentioned before, our engagement is a major event (still waiting on the ring), and last weekend we went and bought ourselves a new house. It's only 5 minutes from where we are now, but offers much more space and character, being a beautifully renovated Edwardian villa. We want to move today! Sadly, the lawyers, estate agents, surveyors and Government feel the need to cash in, so we are waiting at the behest of the property vultures. However - it's gotta be done!

Of course, with taking on a mortgage etc, I also need to get life insurance, critical illness etc sorted. I shall be fascinated to know what sort of loading the company will impose, not to mention whether they will pay out on insurances should I relapse. Some time ago, I enquired about this, and was told they would only pay out on certain conditions, and Hep C is not one of them. How typical that they want to have their cake and eat it. I'll call the Hep C Trust in a bit and get their advice.

After our holiday, we are back for a little while, before travelling to North Wales, via Stratford (we're going to the Royal Shakespeare Theatre to see The Tempest). This is only for a few days, and is more of a pilgrimmage than a holiday, as we are visiting the place where Vicki lost her parents some 17 years ago. That makes it an odd trip, but very cathartic, if our last visit is anything to go by. That was the first time Vicki had been there since the accident, and was very emotional. It will be interesting to see how this visit goes.

I also made a pilgrimmage of my own earlier this week. We had gone to visit Vicki's grandmother, who is almost 99 and was coping with the heat better than any of us. We took my mother, so that she could talk about old Birmingham with grandma (they both lived most of their lives within a couple of miles of each other). So that Vicki had some time on her own with grandma (you know how it is - lots of girlie talk about me), my mum and I went to visit my grandparents' grave. It was the first time I have been - 3 years since my grandma died, aged 98, and 65 years since my grandfather was killed in the war. Oddly, it's the same cemetery where Vicki's great-grandmother and grandmother are interred. A rather strange feeling, as I never knew my grandfather, but a valuable experience nonetheless.

And today is Vicki's birthday! She is feeling positively middle-aged, but still doesn't look a day over 35 (ow - ow - being hit!! I'm delicate and ill and on treatment, and should be treated like a valuable ornament). In fact she's only 27, and as she got her award for losing a full stone in weight (actually, 16 pounds in total), she looks absolutely wonderful! Just a shame it has to be today when I have my injection, so we had to go out for a meal last night.

Apart from that, an uneventful week. I felt very unwell until Tuesday, much worse than normal, but still coped ok - we even won the pub quiz. I also participated in a piece of Hep C research the other day. Oddly, I was asked if I found it difficult to commit to longer term decisions just now. Having replied 'yes', I realised that we had just got engaged and bought a house!!

So - beginnings and endings - and all very positive.

Hope everyone is doing well.

Take care

Nick

The End is (very) Nigh!

2006-07-13T17:33:00.000+01:00

I almost feel I should wear a placard to tell everyone that treatment is close to finishing. Certainly, it occupies a lot of my thoughts and conversations. While it's a predominantly joyful thought - just the sheer relief of getting it over with - it's still tainted with the idea that I have final PCR test results in less than 2 weeks and SVR 3 months later. However, it's impossible to spend all that time wondering about what is and what may never be, so I'll just enjoy not taking daily riba and not injecting myself each week and even if I get post treatment side effects - at least a week will have seven days in, rather than the 4 or 5 I've been functional for during treatment.

Today has been very interesting. We spent the morning speaking about Hep C to four different groups of pupils at a local secondary school. Some of the pupils may be reading this later - I hope so. They were a great audience to speak to, and I am sure that they got many of the key messages - many of them are at an age when they will soon be taking decisions about some of the risk factors involved with Hep C - having tattoos or piercings, using drugs etc - and I just hope they will use the information to minimize their risk of contracting the virus. It's a notable fact, that while most people diagnosed with Hep C are over 40, most of them have had the virus for over 20 years - it's vital, therefore that the messages get across when they are young. Anyone who has had to go through treatment will know that prevention is certainly much better than the cure! Department of Health - take note!!

Until today, this week has not been one of my best. I didn't go to work on Monday as I felt too ill, and I only managed half a day on Tuesday. Yesterday was better, and our neighbours invited us round to sit in their hot tub for a while, which was wonderful - although I still feel rather self conscious about my appendix scar and injection 'blobs'. I actually felt rather superior today - Vicki had several glasses of wine and was a little hung over, while I feel absolutely fine in my alcohol free condition. I shall polish my halo later!

In terms of side effects, the main one has been just plain tiredness - although my gums have started to bleed again a little, and I'm getting rather itchy - especially on my face, where my skin feels rather bumpy. Main problem however - just feeling incredibly rough - and the inevitable irritability and lack of communication.

Going back to the work at the school, I hope that a few of the pupils may decide to use the presentation to base their project work on next year. I've told them either Vicki or I will be delighted to support them, and there's the potential for several projects - making videos/audio documentaries, awareness research amongst peers, case studies, awareness posters/TV-style adverts, sorting out drama workshops to be presented in schools etc. As I mentioned in my last post, I've seen these types of project before, and the quality is usually very, very high. It was also good to be alongside so many people from different organisations - Fire Service, St John's Ambulance, When you Wish upon a Star, Recycling - to name just a few.

And now it's almost time for my injection - writing this is a useful delaying tactic - so I may end up writing War and Peace! Well - I may if Vicki lets me - and she won't!

So - I'll go and do what I have to and get ready for my 'non-days'.

Hope everyone's ok.

Take care.

Working and sleeping

2006-07-09T09:25:00.000+01:00

I'm having a good few hours today. At present, that's just how it goes - I get up in the morning feeling reasonable - coughing, sneezing and with runny eyes - not to mention rather brain-fogged - but it's the best time of the few days following my injection. Friday is eminently forgettable - I do little more than sleep, not even bothering with light housework etc as I used to, while Saturday passes rather like a dream. I hate these few days. I can take paracetamol for the headaches and piriton for the sneezing and eyes, but these just help me to sleep. I've also started to get the mouth sores back, and have a nasy sore on the corner of my lips - I've been treating this for a week now, but still can't open my mouth wide enough to eat an apple!

However, this all gradually eases during the week, and by Wednesday, although I feel tired, I'm able to go through the motions of normal functioning. As ever, Vicki gets the rough end of the deal - I make myself keep going through work etc, and just vegetate at home - not too odd I suppose, most of us tend to 'walk the extra mile' when in company and suffer later. I'm certainly noticing my lack of concentration. Several times, people have said things to me, and I reach the stark realisation that I have no idea whatsoever what they said or how to reply. I then babble away, talking rubbish and realise that they are giving me odd looks, as I try to make the supreme effort to get back to the original point. It's embarrassing.

On Tuesday, I was at a staff training day. As we were reviewing the previous year, I felt a little out of things anyway. There were points when I would have liked to contribute, but lacked confidence that what I wanted to say was relevant and not blatantly obvious. That's just not like me, and I can't wait to rediscover my sense of self belief - it probably means that I will go back to being irrelevant and stating the bleeding obvious - but I just won't care!

On Wednesday, Vicki and I made a presentation about Hep C at a local school. This was intriguing - a school in an area of high social deprivation with many pupils from challenging backgrounds, and a lot of challenging behaviour. Exactly the sort of place where the messages about Hep C need to be put across. After a tricky start to the day, things went really well and the immediate feedback was really pleasing. There's no question that these are the sort of pupils who may well take risks in their future. I hope we will make some of them think twice before doing so - even if just one or two avoid risks, it will have all been worthwhile.

In fact, just visiting the school was great - a lovely, caring environment, pupils treated with respect, and a bit of a return to my previous teaching career with challenging pupils. I had forgotten that good behaviour management depends so much on relationships and that meeting a new class requires time to develop that relationship. Also, my focus was on getting across the content of the talk - given this, and the fact I didn't know the children's names - the first session was a bit tricky - but things improved and we had a really rewarding day.

By next week, we will have spoken to about 300 10 - 14 year olds, and allowing for the spread of information by word of mouth, I think well over 1000 people will have had their awareness of Hep C raised. I couldn't be more delighted, and can't wait to build on this.

Next week we are at a secondary school, with a slightly different focus - speaking about Hep C but also presenting ideas for pupils to follow up as part of their Citizenship project. Knowing how well young people can work on such things, I think this offers a great chance to develop awareness still further.

While looking for resources to support this, I also received a video from the Hep C Trust, which was made in 2002. It came with a warning that it is a little 'grim' - but watching it was actually very refreshing. Such a change from the Department of Health attitude of 'playing it down'. It showed stark reality - people who have died as a result of Hep C, people whose lives have been turned upside down, people waiting for liver transplants. This is harsh reality - the message people should be receiving - it remains a fact that an unacceptably high number of people end up with end stage liver disease as a result of ignorance and misrepresentation of the virus.

Having said that, I was contacted recently by the BBC who are coming to interview me on July 20 - and to film me doing my injection. The media have always shown interest in Hep C as a major health issue, and it's just a shame that our political masters choose not to demonstrate the same concern. However, we all know that our Government are always willing to grovel to media, so if we keep going, there may be results in the future. Let's hope that, in time, policy makers will move away from their habit of paying casual lip service to the problem and start to take some real action.

Enough politics - now back to supermarkets. Why don't supermarkets ask parents to control their kids? I was in Tesco recently on Family Allowance day - it was full of parents with young children. The vast majority of these were beautifully behaved - but a few just ran riot - dashing in front of trollies, rushing round corners and banging into people and screaming and squawking. The parents of these were either nowhere to be seen or stood to one side looking helpless. The answer's easy - if children don't know how to behave, either hold their hand or take them outside - nothing worse than seeing a parent who has obviously shut themselves off from their child and allow everyone else to suffer. I have only once snapped and had words with a child - when a trolley was pushed into the back of my legs opening up a painful cut across my ankle. Riba rage? Maybe - but more irritation at the lack of interest and care being shown by a small minority. I just wish the supermarkets would realise the potential health and safety consequences of this and ask parents to control their offspring.

Hmm ... I'm in a good mood today .. better have some breakfast and see if an increase in sugar helps. In fact, mood is nothing to do with it - I'm just a grumpy old git and don't care who knows it.

Take care everyone.

Ups and downs

2006-07-02T15:05:00.000+01:00

Last week was a good week. Not because of any improvement in treatment side effects - more of those later - but because good things happened. Our engagement was the first one of course. In addition to this, we re-discovered one of our cats who had been missing for 6 days. Anyone who is a pet lover will know how distressing this type of thing can be, and may also have experienced the relief when the wanderer returns. To say we were ecstatic would be an understatement - and both cats are now being thoroughly spoilt.

Having said that, we were utterly shattered on Friday and Saturday. I mentioned previously about feeling emotionally drained. I suspect this has led to almost shutting down and withdrawing into myself. I referred to this previously, but this is maybe some kind of rationale.

I'm also finding the hot weather extremely hard work. I am not keen on being outside - my skin seems sensitive and my eyes are terribly sore. Later in the evening, my eyes just stream, making it nigh on impossible to see properly. I am using eye drops and taking anti-allergens, but the impact is limited at present. I've now invested in some reactolite sunglasses and they seem to be helping - I can tell, as I have had to wear my normal glasses to write this, and am immediately feeling the itching and discomfort again. My nose is also streaming, and I'm sneezing very unpleasantly. It seems like good old fashioned hayfever, but I've never had it previously. I wonder if this is one of these things which treatment influences. It certainly feels that way, as I'm also feeling very affected by chemicals, and really not well at all.

People have told me that the last few weeks are tough, and now I believe every word!

I'm also starting to think forward about the things I will miss when treatment finishes, and will be listing some of them over the next few weeks, before I find out what I actually do miss. It's odd really. Missing something doesn't mean that it has to be something good - it's all those little routines and rituals which over a year become part of 'normal' life. Maybe it's in part this which produces an apprehension towards finishing treatment - or maybe it's just finding out whether it was all worth while.

The big question, of course, is would I do it all again if it has not been successful? And the answer is emphatically 'YES'!! Unless there are clear, medical reasons to not have treatment, it makes no sense to me to bury my head in the sand and wait until my liver reaches the point of no return. And anyway, how selfish would it be to allow those close to me to know that over the years, I am simply deteriorating, rather than biting the bullet and trying to get better once and for all.

However, right now, I feel positive and plan for successful treatment - and then getting fit, healthy and counteracting long term viral effects as much as possible. Plus, we have a wonderful future to look forward to, and that's worth anything! I'm even preparing my winner's speech - it'll be like the Oscars - so many people to thank. All I have to do now is get past the stage of being one of the short-listed nominees (considering how few people actually get treatment, I already see myself as one of the lucky ones), and achieveing the dizzying heights of being one of those who actually clears the virus.

So - the end of the virus is nigh and there is a real chance for a fresh start and to move forward to a better life.

Take care all.

Getting back to normal

2006-06-28T18:48:00.000+01:00

I haven't written on here now for a couple of weeks - a long break for me! The reasons are fairly simple - too tired and too busy!

Of course, 'too busy' for anyone on treatment for Hep C is not the same as for other people - for me, it means working or doing normal domestic activities, followed by sleeping at home and waking up absolutely shattered and spending my evening like a vegetable. No surprise that my haemoglobin has dropped again (only to 10, but still a drop), and my platelets are down to 63 (not my lowest, but low enough!).

Anyway - I think this photograph shows that treatment has really taken its toll ....

... on the other hand, haven't I got Vicki well trained? (Hmm ... better take cover when she reads that!!).

In truth, the picture is from our visit to the Rocky Horror Show a couple of weeks ago. It was a little odd walking around Manchester dressed like that at 5pm - but I'm beyond caring. In fact, it was so enjoyable, we're going again in September to the show in Leicester. It'll be nice to go after treatment - the edge is constantly taken off pleasurable experiences by having to look at them through a haze, and I have been acutely aware of this recently. It's especially true when watching football. England's World Cup games have hardly been thrilling, but I can barely be bothered to celebrate goals - just a quiet 'yes!!' and back to my semi-dormancy again.

This is all rather difficult for Vicki. I know she is as enthusiastic to get treatment over with as soon as possible. Then she will just have to put up with the 'real' me! Thankfully, however, things can't be too bad. We popped out the other day to buy an engagement ring. All I have to do now is propose properly - apparently the first Derby County home match of the season won't do, neither will the cricket ground, so I'm having to exercise my romantic brain. First, however, I've got to find it!! I have a few weeks while the ring's resized, so I'm sure something will inspire me.

Work has also been busy lately, as students complete their courses and I have been involved in 'Viva Voce' interviews. I know sitting and asking questions is hardly strenuous, but listening to the answers and remembering who said what - not to mention giving a grade - gets mentally tiring after a while.

I also know that I have been rather uncommunicative - mainly as I can't think of anything to say most of the time and feel as if I'm sitting in my own private bubble, looking out onto the real world.

Worst of all have been my immediate 'post-injection' days. I just sleep most of the time, and take paracetamol for headaches. There's no question it's manageable - but I am reall y looking forward to finishing it. I just think forward to the time when someone will say that my Hep C has cleared and I can just get on with life. Obviously, it'll never be totally behind me, even if I do clear - there will still be regular hospital tests - ultrasound and bloods - just in case my liver continues to deteriorate. Mind you, that will be partly in my own hands - and my post treatment lifestyle will need some consideration.

I'm also thinking forward to how I can continue to be involved with Hep C awareness after treatment. I certainly plan to keep going with the education presentations, and hopefully build on them next year. In fact, Vicki and I are going to two schools over the next couple of weeks. These will be quite a challenge. Next week, we go to the school of a former student, who was today awarded the East Midlands Outstanding New Teacher of the Year Award. I was delighted to attend the ceremony and see someone who is so hard-working, caring and a genuinely excellent teacher and person have her achievements recognised. The week after, we go to a school which won the East Midlands Healthy School of the Year Award. Both schools are used to high standards, and our presentation will need to be at its best to impress them.

The future of the education awareness programme also depends to some extent on work commitments. Although it fits in well with the aims of the University, priorities will need to be maintained! Ideally, funding will be forthcoming to allow us to develop the education programme at an increased level - but we will have to wait and see.

Anyway - enough bemused ramblings.

Hope everyone's doing well!!

The World Cup as a sedative

2006-06-15T09:42:00.000+01:00

The World Cup is under way, with its usual blend of hype, excitement and passages of utter boredom. Don't get me wrong - I love football, and was watching England (as I shall be tonight), wearing my England shirt, and getting totally involved. It's all the other games in between. I feel that as a football lover I should watch football being played by the best players in the world - but at times, I just can't get interested as I watch an hour of scrappy ball chasing and wait for that 2 seconds of brilliance. I have, however, found a purpose for this. Each evening, Vicki goes off to do her yoga. There's nothing to watch on TV, so I put on the football - and sleep throughout the match, usually not waking up until it's time to check the result on Teletext. It works for me!

This is quite a relief, as I've slept a lot during the day this week. This is a direct consequence of being at work, with students and colleagues around. I've referred previously to how difficult I find normal social interactions - they leave me tired and shaky, and I'm all too often aware that I have to force myself to concentrate on what people are saying. I return home shattered and useless and ready to do as little as possible. This has become rather a pattern - when I know I have a busy time, I plan 'down time' both before and after in order to cope with it. This is fine for one off events, but will prove difficult over the next couple of weeks, as I get back to the day to day habit of working.

It was good to be back at work. Colleagues and students were quick to ask after my health - even though some did not know that my absence was due to my appendix op rather than Hep C. What was notable was how many didn't recognise me from a distance and responded with surprise when they got closer and realised who I was. I even heard a student behind me whisper to another 'Is that Nick?'. Most of them are aware of my condition, due to my occasional forrays into the media, and it's remarkable how so many have been willing to support. It's also notable how many people have discussed challenging personal circumstances which they are undergoing themselves. Maybe they feel that I can relate to the whole idea of how tricky it is to perform at a high level when inhibited by external factors. If they think that, they're correct! I have long believed that work related stress is often a result not of work alone, but personal pressures and work pressure combining to make life unmanageable. Sadly, modern work is judged by performance measures, targets and fixed criteria, taking no account of private lives, which remain inflexible whatever. Greater openness, understanding and tolerance of short term issues would really help to reduce stress. And here we are again - my standard complaint about lack of psychological support and care for mental well-being. It's a fact - profit leads and people have to suffer.

Enough politics.

This week has been fairly quiet apart from work. A couple of hours watching my cricket club on Sunday, the England match on Saturday, quiz on Monday. The main highlight has been Vicki's diet. She has been working really hard to lose some weight this week, and our shopping and eating has been tailored around this. The result has been healthier food. In turn, she has lost 6lbs - and is absolutely delighted. In turn, I am delighted for her. We're both eating well - although I tend to supplement diet food with the occasional chocolate bar - and she seems so much better for it. I'm sure I would feel better if I stopped raiding the pantry, but I feel the need for a big energy rush after my afternoon sleeps. I wake up feeling utterly drained and very unsteady on my feet - not to mention incapable of responding to conversation. Vicki frequently sits next to me and has to repeat things several times to get a response. It's as if my eyes are open, but my brain is sadly lacking. Some may argue that this has been a fact for years.

This week also brought a moment of stark reality, when I found that a good friend who has been on treatment for Hep C and finally completed his 48 weeks had not cleared the virus. To say I was shocked is an understatement. He did everything right, was positive and seemed set to succeed. It was a wake up call. I've assumed all along that I will clear this thing, but seeing someone who I know fail, despite everything, brought me back to stark reality. I still have as much chance of failure as he did, and as I have always had. Oddly, this was far more affecting than all the other instances of relapse I have read about. Anyone who starts this treatment should know their chances of success, and prepare for either outcome. It adds a touch of stark reality to the sometimes blind positivity which can take over.

Having said that, it's a battle lost - but the war goes on, and as new treatments are trialled, there should be a positive belief that something will come along in future, and Hep C can be defeated. Let's just hope that administrative wrangling, financial nit-picking and Government policy/prejudice don't leave people suffering unnecessarily (oops - sorry - promised no more politics ... hard to avoid though).

Anyway, today is injection 42 for me. 6 to go. Then the penultimate moment of truth - have I cleared at 48 weeks? This to be followed by the ultimate moment of truth - have I cleared 3 months after treatment? As I approach the end, these questions are looming larger, and I still believe that I will succeed. On the other hand, I also believe that England will win the World Cup, Derby County will get promoted next season, that I will catch a 1000lb marlin on holiday and that people reap the rewards they deserve in life. All possible, but dependant on the roll of a dice, the toss of a coin, or the cards that are dealt. Let's wait and see.

Take care.

Back to work

2006-06-08T16:13:00.000+01:00

Finally started back to work properly this week, but most of my time has been spent with marking. I reckon, including what I did last week, I've marked about 100 pieces of work - well over 200,000 words worth of marking, and 50,000 words of comments - and just another 25 or so to do by Monday - although these will be a lot less time consuming. As a result, we haven't done too much else.

On Saturday and Sunday, we went to watch some cricket. It was great to see all our cricketing friends again - and very noticeable that as some of them hadn't seen me for almost a year, that I wasn't always recognised at first, probably due to my weight loss and rather 'flyaway' hair. I have discovered a couple of problems with watching cricket. Firstly, I miss playing; secondly, my skin is very sensitive to the sun, and I got rather uncomfortably burnt on my face. I'm still plastering on gallons of moisturiser, and have a rather unpleasant tingle - I don't stop traffic any longer though. I also found out again how tiring it is to be sociable, and we left at about 6 o'clock each day. This may have been just post-injection side effects, as I felt very rough on Friday, and this persisted well into Monday - when I spent the evening shivering and shaking - a result of too much sun I think.

Our day at the Test Match was also fun - we sat directly behind a dragon, a badger and a large group of students dressed as St. George. They kept us entertained through the day, until badger and dragon were thrown out of the ground towards the end, for doing nothing wrong whatsoever. It seems that putting a luminous orange jacket on someone turns them into a miserable git and removes their sense of humour. Thankfully, the lobster who subsequently joined the group remained to the end. Oh - and the cricket was ok!!

Monday was the broadcast of a play on BBC Radio 4 about Hep C - 'Grumpy Old Gits and Llama Lashes'. I know which of these groups I fit into. It was a really well structured play, using verbatim quotes from some of the earliest Hep C bloggers - so parts of it were familiar to me. I hope plenty of medical professionals were listening, as such a clear expression of patient experiences and views would have to be beneficial to many of them. The play succeeded in presenting a realistic view of the experience, presenting highs and lows - but remaining positive throughout. If anyone wants to hear it, let me know and I'll forward the link to you. Congratulations are due to all involved.

I spent yesterday at work, and a colleague came up with a novel idea. He suggested that now that I have a lovely appendix scar, this area of skin will have no nerves, so if I inject direct into the scar it will be painless.

Hmmm....

It makes sense, and is logical, but I think I'll give it a miss! To be honest, for the tiny amount of pain that the injection causes, it just isn't worth it!

Today is jab day, and we've just got in from doing a presentation about Hep C at a local primary school. It seemed to go really well, having just looked at the evaluations. As time was a little shorter than normal, we left out the drama activities - I made the mistake of mentioning this to the pupils, so the main criticism which was mentioned was the lack of drama!! However, the response was very positive, and the learning objectives were very clearly achieved. They were a lovely group of children - about 40 of them, and, as ever, it was a real pleasure for me to get back into a classroom. Vicki enjoys these presentations, and we discussed how she can present the part about treatment next time - maybe she has a better perception of this, as she has to put up with it all the time. In some ways, it's my revenge for PMS - if she gets it, I suffer - with side effects, I get them and she suffers!! I think she's rather apprehensive about leading a session for the first time, but I have every confidence she'll relax and enjoy it after the first few times - not to mention doing a great job!

Time to sleep now. I took paracetamol before going out, and am now beginning to suffer with a headache, so I should rest. Nothing worse than feeling totally washed out before the injection - and with so much football to watch, I'm attempting to achieve the rare feat of staying awake for an entire match!

Hope everyone's feeling ok. Take care.

Single figures!

2006-05-31T17:36:00.000+01:00

Last week was my 39th injection. I'm now into single figures. There was a time when I thought I would never get this far (there was a time when I thought I'd never get treatment at all), and now I am here, the number looks small. In fact, it still feels like a rather long time, and I know many people feel that the last few weeks are very difficult, so I'll just keep going a week at a time and count down.

Having commented on fatigue last week, things haven't really improved on that level. After my visit to the hospital, I came away and realised that my hands were shaking and I was quite short of breath. That was just from making polite conversation with my nurses. It hasn't really been a huge problem, as much of my time this week has been spent sitting and relaxing apart from odd bits of housework, shopping etc. Yesterday was an exception, as we went out for the afternoon and this involved quite a bit of driving. On the way back, it struck me how shattered I was and how my concentration was far from perfect for driving. I think I need to stick with short trips in future.

Officially, I've started back at work now - though I realised when I got up on Monday that it was a Bank Holiday. Very nice! Last couple of days have been all marking, and it's going quite well - well, it's getting done anyway.

On the whole, the last week has been ok - but I am aware of the excess sleeping and rest I seem to need - plus the return of the itchy spots. Vicki also just mentioned that I've been doing a few extras, as she's had a rather nasty cold. On the other hand, she did mow the lawn in a twenty minute gap between rain - so any extra I have done has been very limited.

On a broader scale, there was plenty of publicity for the 2 reports about Hep C published through the Hep C Trust. These were very interesting to read - especially about the implementation of the Department of Health action plan by Primary Care Trusts. I was not surprised to see that my previous PCT scored only 4/10, while my current one scored 8. It fully justifies the change I made, and information like this should be very valuable as efforts are made to give patients more choice in their healthcare provision. The variation between areas was stark, and probably says more about the interest and commitment of PCT s than about practical issues. No patient should be treated by people not committed to diagnosing, treating and curing them.

A BBC health correspondent also contacted me about coming to do a piece about treatment - he wants to film me doing my injection. So - my appendix scar, injection marks and flabby gut will be on TV at tea time - I hope they preface it with that comment that 'some viewers may find the following scenes disturbing'!

We also have a busy time coming up in awareness work, where we will be doing talks to about 200 children. This has involved some alterations to my usual talk, due to the need to be flexible with time. In some ways, however, this is quite a relief while I'm feeling so tired.

So - not the busiest of weeks, but it's one more week done, and I can now count down my injections on my fingers - and keep the remaining ones crossed that it's still being successful.

Take care!

Comparisons

2006-05-22T10:03:00.000+01:00

Having moaned about last week, this week was even worse. Friday I was almost totally useless. I didn't get up until 2pm, then slept twice more before going to bed at 11. Saturday was better. I woke with a terrible headache, but took paracetamol to lessen it. Then, Vicki and I got on with the housework. After about an hour, I gave up and slept. Later we went shopping. Asda on Saturday is the wrong place for me. My undirected anger bubbled away below the surface, and I was on the verge of saying 'Let's get out of here'. However, we had no food at home, so getting out would have meant going somewhere else, so I just simmered and made curt comments - especially about the button by the egg display which clucks loudly when pressed by children. I remember saying something about 'Shut those clucking hens up!!' - well, it rhymed with that anyway. When we got home, I went to sleep again. I'm just too tired.

Yesterday was better. We decided to sort out some old photographs. While doing that, Vicki commented several times on how much I had changed over the past couple of years. So, here's some examples for comparison.

Summer 2003 (Pre-diagnosis) February 2005 (Post diagnosis)

July 2005 (1 week before treatment) April 2006 (Treatment week 36)

Personally, I'm not good at spotting differences, but I know that over this period, various people who know me have commented on how I've changed - and some have even failed to recognise me.

Anyway, having sorted out pictures yesterday, guess what I did - yes! I went to sleep again. I awoke feeling awful as usual, and after eating, still felt unwell. Vicki went to talk with a friend on the phone, and I just started to feel worse. In the end, I checked my temperature, and found it was rather high (37.1 - not approaching the dizzy heights of 39.5 which happened while I was in hospital a few weeks ago). I was a bit concerned, as I desperately want to avoid infections, and I know Vicki has been unwell for the last week, and also had a raised temperature. My main worry is that having missed a week's treatment recently, any more interruptions could be a problem if I get an infection my immune system can't handle. However, today seems a little better, so fingers crossed.

Vicki's still in bed at the moment - I suspect her chat with her friend may have tired her out. My main concern is that she might have sheared a pin in her jaw - they certainly know how to talk!! She was probably moaning about me! It's a good thing that she has someone she can talk with like that if she needs to (I know the same friend was supportive while I was in hospital) - it seems unfair that I can moan to her about all my itches, aches pains and ailments, and she has so little access to support if she wants to talk about me.

Anyway - tonight promises to be ... er ... different! We're going to see Take That in Manchester. Vicki was a big fan in her youth, and so is looking forward to a nostalgic evening. I just want to see a load of middle aged blokes trying to pretend they're in their twenties. Actually, I'm sure it'll be good fun, and I plan to spend the rest of the day with my feet up so that we can enjoy it.

As for the rest of the week - I need to go to work and collect some more marking (yes - despite the rubbish on the news, over 80% of lecturers are still marking students' work - not much choice really, with the sort of actions taken by universities to punish them - I received a wonderful series of threats from the University HR Department in the post about this last week!). I'm officially still off sick, but I may as well do the things I can do. In fact, marking is ok, but slow for me, and needs frequent breaks - not just due to my poor eyesight and regular headaches, but because the concentration needed to offer quality marking is intense - and this is hardly compatible with Hep C and being on treatment. I know some people have said that they find any reading difficult.

So - another jolly week coming up, but with a glance ahead to see that injections will soon be in single figures. Never thought I'd get to this point when I started last August.

Take care everyone.

Not the best week!

2006-05-18T16:43:00.000+01:00

Well - I finally picked all the scabs off my incision - despite frequent wrist slapping from Vicki - and although my stomach muscles feel rather tight and tender (I still avoid carrying and twisting movements), I'm feeling very strongly that my appendix is well behind me, provided I don't overdo things.

What's been really interesting is how my side effects seem to be changing - almost following a similar pattern to the very beginning of treatment, but with some differences.

This week, I've been so tired. Friday was spent mostly sleeping, and every other day of the week has entailed long day time naps - sometimes very deep sleep. Having said that, my itchy skin seems much better, as do the mouth and gum sores which had become so debilitating. Maybe this is because my current routines, developed over the course of treatment, take better account of these. However, the worst problems have been headaches. When I wake up, I feel awful - I remember feeling this way when I used to drink - a few pints at lunch, then waking suddenly after a couple of hours afternoon dozing. Thing is, I also feel this way in the morning, and am waking up each day to paracetamol, which have only a very limited impact on the pain. I've also become very apathetic - just feeling under the weather, and can't be bothered - like having a heavy cold or flu. Interestingly, Vicki went for holiday jabs yesterday, and described the same kind of feelings. Suffice to say, yesterday was a very untalkative afternoon! I'm feeling this quite a lot at he moment - I'm spending a lot of time not being very chatty - but mainly because I can't think of anything to say - I just feel too lousy.

Having said that, I am helping out with quite a few things - housework, shopping, gardening etc. I've also done some work - plenty of marking - but I find this gives me a ferocious headache after a while. In truth, after an hour, I've had enough and just want to sit and sleep. I don't find that easy, as Vicki has just kept going, and I feel guilty about sitting and watching her work.

Another change has been my digestive system. After the op, things seemed to improve (I'm sure you don't want the details!), but now seem to have returned to the typical patterns since being on treatment. Essentially, for the few days after my injection, things slow down to almost a stop - I usually put on 2 or 3 pounds in weight - then towards the end of the week, my system makes up for lost time (sometimes in very impressive fashion!), and those few pounds drop straight off again. I have mentioned this to my nurse, who is not concerned - provided things are kept on the move - and not too frequently!

At least this week we managed to get to the pub quiz, and performed reasonably well. A couple of neighbours have started to join us, which means that we now have a stronger team - with luck, we may start to win more frequently (or just occasionally would be nice!).

One problem with the time spent sitting and being apathetic is the tendency to become introspective. This week, the net result has been feeling sick of feeling sick. As such, hopefully we will get on and do a bit more next week. This week has been rather complicated by weather, deliveries and various rather prosaic day to day jobs. No bad thing - plenty of loose ends sorted out - but a short amount of time sitting about or visiting the doctor means that quality time gets eaten into. We've also been frustrated in plans by banks failing to stick to promised dates (if only I could have the amount of time to clear an overdraft which they take to process a simple account transfer!), monies which should legally have arrived two days ago not appearing and various other financial irritants and legal wranglings which simply serve to make me wish that people would do their damn jobs properly! Currently, one good burst of riba rage will encourage me, once again, to call for a little chat with Nat West about their unreliability - and the fact that they are profitting nicely from the interest, which I should be earning.

Hmm - I feel a rant approaching. Better stop now.

Hope everyone's well!

Relaxing

2006-05-11T17:51:00.000+01:00

It's been a while since my last post. No real reason for that, we've just been relaxing and I have been generally recuperating. Having moaned about being given six weeks off work, I'm starting to see the sense in it. Although I'm more mobile and functional, I'm still getting discomfort and avoid heavy lifting and any twisting motions. I'm also extremely tired, partly, I suspect, due to treatment and partly down to general post-op recovery. Basically, I'm able to keep going for an hour or so, but then I'm ready to sit down. In fact, a little light activity tends to help, although my healing muscles complain a little - in fact, it's more comfortable than being in one position for any length of time.

We've actually been fairly busy. On Friday, we went to see a live performance of 'Little Britain', and on Saturday we headed off for a a few days' break in York. I've never really been a huge fan of convalesence, but this changed my view - just three days of gentle pottering and resting seemed to help enormously. In fact, this was helped by being in such a lovely location, having pleasant weather and plenty of easily accessible attractions to visit. We even visited Whitby for a day - 199 steps up to the abbey was hard work, but we managed it with a couple of breaks on the way.

Reading that back it seems absurd - not too long ago, all of these things would have been easy - a few steps, a little light walking etc. Now it resembles a trek across the desert! On our last day, I became very aware of this, as my feet started to drag, and elderly people with zimmer frames overtook me. I just pretended to look in plenty of shop windows and take in the sights. Vicki really did look in the shops windows - and was probably delighted not to have me dragging her away!

Of course, with this happening over the weekend, I was very post-injection, particularly with the fatigue, but also a series of very nasty headaches which seem to be lingering. I have started taking paracetamol and piriton (for my itchy skin) last thing at night. It really seems to have made a difference to my sleep patterns - in fact, I have enjoyed at least 5 hours of unbroken sleep almost every night for the last week. Thanks to Martin for suggesting this - it certainly helps. One positive change in side effects since my operation has been the reduction in mouth sores. For the last week or so, I have not been spitting blood each time I clean my teeth, and this is so much more comfortable. I had some immediate problems with my throat which my nurse thought may be thrush, but gargling with medicated mouthwash seems to have cleared this. Also, my skin on my arms is much better than before - it's just my chest which is so itchy now.

Another interesting change in treatment effects has been the marks at the injection site. On my stomach, these were red and angry, but on my thigh they have become rather tender to the touch - a bit like sunburn. Maybe it's because there's less fat on my thighs. To be honest, I want to get back to injecting in my stomach - it's just a personal preference, but I feel more comfortable that way.

Other than this, quite an uneventful week - although Vicki was at the dentist today - always an event in itself - having some more work done on her teeth. Painful and uncomfortable!!

Yesterday, we also started sorting out all of those financial bits and pieces which we seem to have overlooked for far too long - anyway, pensions are sorted, as is life insurance and other long term savings - not to mention movement on the mortgage front. I mention this along with the dentist, as getting money out of me is certainly rather like pulling teeth.

Probably the most interesting thing this week has been another booking to deliver the education presentation about Hep C. This time to secondary school pupils. This will be interesting, as it's part of the build up to a project for their GCSEs next year, where they need to choose a health/citizenship issue. Hopefully some of them will take the idea on board and decide to pursue some of the issues further - some really interesting work could be produced.

So - that's the main highlights.

Hope everyone's feeling well.

Take care.

Revenge of the interferon!

2006-04-30T10:47:00.000+01:00

Firstly, just to draw attention to a new link - Suzy Smith's blog. I have known Suzy for a while now, and her book about her experiences with Hep C is due to be published shortly. As I've written the foreword for the book, I'm really keen to see it succeed. Her blog is well worth looking at.

After a fairly mild set of sides last week, and not having the mouth ulcers and itchy skin, this week has more than made up for it.

Things have been quite odd - starting with the GP on Wednesday. Having spoken to the nurse, I had asked for a sick note to the end of next week. All seemed ok - I am starting to get more mobile, walking to the shop and the post box, and just feel rather tender and wary of lifting anything. The doctor appeared and told me that he always signs people off for six weeks after an appendectomy. Thinking it through, this is probably more based on insurance than essential medical need - but basically I have no choice but to stay off work until the end of May. In fact, the discomfort and tiredness I experience after just a small amount of activity probably makes this valid.

On Thursday, I visited my nurse for blood tests etc. I think she expects the results to be 'different', but hopefully not to the extent that treatment will be effected.

It was also on Thursday that I noticed the extent of dry skin on my stomach and right hand side. On checking this, I found dry skin covering the inside of t-shirts, bedding, everywhere. With a good rub, I can create a minor snow-storm. It's now commonly referred to as stomach dandruff. It's also sore and very red, so I'm using my moisturisers, creams etc again to to try to regain control, and save having to vacuum the bed.

In fact, after my bath on Thursday, I felt distinctly horrible when I saw myself in the mirror - my injection sites on my stomach have remained longer than normal, one of them being rather bruised, there is an incision about 5 inches long (people tell me this is bigger than normal - Vicki did mention, however, that they had a good poke around in there as there was plenty of infection), another scar higher up from a minor op some years ago, all the soreness and redness, and now injection site marks on my thighs. Attractive, eh? At least it detracts attention from my uncontrollable hair. I decided some pampering was needed to boost my flagging self esteem, so I trimmed my nostril hair and took a cotton bud to my ear wax. OK - not a full makeover at a health spa, but it's a start.

Come Thursday evening, it was jab time. No problem with that - but about a couple of hours later I started to feel rough. In fact, I had an awful night's sleep, and was up at 3.30, wathcing rubbish on TV and waiting for the paracetamol to work. As a result, Friday was bad. I couldn't concentrate, kept dozing and was simply on a different planet. At least I slept well.

Yesterday, I still felt unwell - especially in the morning, which is odd for me. However, after resting till early afternoon, I felt well enough to supervise Vicki with the lawn mowing. I alson washed down the garden furniture, so we're now all set up and ready and waiting for it to rain for the next 3 months.

Now that I'm a bit more aware, I've started to reflect on my stay in hospital. It was not impressive - nothing to do with the nurses or doctors, simply a result of how the ward was managed - for example, the toilet floor was only mopped once in the 5 days of my stay - I watched the same stains and piece of cellophane each time I went - not to mention the 2 full urine bottles, apparently needed for measuring, which stayed there for an entire day. Add to this the man in the bed opposite me with terminal bowel cancer who didn't get his pain killers until he asked for them - 2 hours late. Who was to blame? Firstly, those who organise cleaning services - my local pub is better cleaned, so are most public toilets - secondly short staffing on the ward. There was an emergency which meant medication was missed, the nursing staff had no choice but to respond - but why was staffing so short that there was no contingency plan for this? Surely emergencies crop up most days - it was a surgical ward after all. Add to that the abysmal food (as a veteran of 15 years of school dinners, I thought they were poor - hospitals are worse!).

It also raised some of my pet medical complaints - I was asked to grade my level of pain out of 10 - compared to childbirth!! I thought I answered well when I said 15 (sorry ladies) - on the other hand, had it been me giving birth with the facilities supplied for me, the answer may have been different. Anyway - what a stupid question!

In addition, there was a huge lack of awareness of my needs resulting from Hep C. Specifically, my platelet count. Although I told medical staff that my records were one floor down, they still wanted to inject anti-coagulants (platelets were at 50). When my nurse came, she discussed this with the anaesthetist and it was agreed that I should be given platelets before any surgery. When I came out of surgery, I had to continually query whether or not I should have anti-coagulants, as no doctor had checked my notes to clarify the situation to nurses. There's a basic message - if you have Hep C and find yourself needing other surgery, for goodness sake make sure that staff are aware and respond - you are a little different to a 'standard' case.

Whatever, hospital achieved its targets, I'm ok, but it says a great deal for the quality of patient care.

So - it's Sunday, and we plan to go and watch my cricket club for a couple of hours, as they're playing very close to home. It'll be good to see people again and just catch up on things - but frustrating to know that I'm unlikely to play this year (well - maybe a couple of games at the end, after treatment).

Just sitting here now, enjoying the acid reflux which seems to have increased of late, deciding whether to have a sleep now or later. The great thing is, Vicki is still doing all the housework, cooking etc, and I'm just champing at the bit, ready to get back to functionality again!

Take care.

Recovering

2006-04-25T18:37:00.000+01:00

A week on, and things are going smoothly. Still rather tender and a bit washed out, but things have been worse.

I re-started treatment last week, expecting to suffer terrible sides after a week off and feeling rough anyway. In fact, it wasn't too bad. I had to inject into my thigh - first time I've done that - which was ok, though it took a while to get enough fat to inject into. Afterwards, I was tired and spent most of the next couple of days feeling tired and sleeping, but nothing new there. In fact, I'm wondering how much of my current malaise is down to being post-operative, and how much is side effects. One minor issue was the rising temperature over last weekend. It had been a big factor while in hospital, and I was a little bothered about other infections, but paracetamol and rest seemed to help, and it has been steady for the last day or so, so I think it was just sides.

A break from treatment has had some benefits - my itchy spots and skin problems have improved enormously, and my gum infections were temporarily better (though getting sore again now). It may be just a brief respite, but appreciated - hopefully at no significant cost.

Over the last two days, we have been catching up on some housework which had been delayed. Basically, Vicki got the garden sorted out (the lawns were awful), and I did a couple of bits and pieces - light pruning etc. This was accompanied by regular warnings and advice to stop and rest, both from Vicki and neighbours. Advice which I'm now following, having developed a distinctly tender area around my stomach muscles.

I think the next stage is driving, and I plan to try it out in a couple of days - it's odd how much twisting and turning driving involves, so I am rather apprehensive, but should be ok.

Anyway, doctor's tomorrow, just to sort out sick notes for work etc, and seeing my nurse on Thursday. This week's bloods will be intriguing, after all the medications and general ups and downs recently, but hopefully nothing too drastic will show up.

I know I'm feeling better today, as I managed to pass my opinions on telephone sales people, as we received a third call from the same annoying bastards this morning. I may have gone a little too far - but we do have BT privacy, so I think it was ok to tell them that I am recovering from a serious (?) operation and considered their invasion of privacy to be effectively an assault. So sad that they don't call door to door - it might have become actual assault. Anyway - with all the high and low emotions recently, a good old fashioned rant at a brainless moron on a telephone provided entertainment - especially as I haven't spoken to Nat West recently, and they're usually the butt of my somewhat 'assertive' moods. I work on the theory that they're used to it - and if they're not, I provide a valuable training service.

Anyway - I've rested as I'm told (mostly), slept, relaxed and generally been a model patient. That's my view anyway. I think Vicki may disagree a little - especially as she has spent the whole time running around after me and sorting things out. It's been lovely not to have to think - but to be honest, I think I would have really struggled with any sort of mental processing right now.

So - getting back to as normal as I ever have been since starting treatment, and given another week or so, I plan to be fully functional.

Take care.

A Slight Hiccup!

2006-04-19T20:39:00.000+01:00

If I ever meet the person holding my wax effigy and sticking in pins, I shall do similar to them with large javelins.

Hep C has always struck me as being unfortunate, but to come down with acute appendicitis after 33 successful weeks of treatment has to part of some orchestrated plan.

Anyway, that’s where I’ve been. Right now, I’m sitting up in bed typing this, so that Vicki can upload it for me later.

This latest saga began last Wednesday. I got up early, did a couple of e-mails and bits on the forum, had breakfast and tablets and went upstairs. Vicki and I planned to go and sort out our mortgage, and I went for a bath. At this stage, I had a mild pain in my stomach – trapped wind I was thinking – or a treatment side effect.

After the bath, I sat on the bed, feeling a bit unwell, and went back to sleep. I woke up in intense pain, feeling really ill and started to vomit – not bringing up too much, but retching violently and feeling as if I might bring up my entire liver at any second (hmm … quick and easy transplant!).

Vicki called my nurse, who said she thought it was probably a bug and to let it run its course. I was in so much pain that I was unconvinced – as was Vicki. After a while, she called my GP and asked for a home visit – by now I was curled up on the bathroom floor, completely unmoveable. There was the usual haggling over making a home visit, but thankfully, Vicki insisted and about an hour later the doctor arrived. Just for a change, I didn’t start to feel better as soon as he appeared, but after his examination, crawled to the bathroom to start vomiting again. He was duly impressed.

An hour later the ambulance arrived and we bounced across speed bumps and through rush hour traffic to the hospital.

I’m sure many of you have had your appendix removed, so I shan’t bore you with details. Suffice to say it’s a routine procedure for the surgeon, but a very scary experience for the once in a lifetime patient – especially when the patient is far more worried that it may result in the failure of his Hep C treatment. I also won’t say too much, as I was put straight onto morphine, and I suspect that this, added to ribavirin and interferon creates a drug cocktail which seriously alters perceptions.

My Hep C nurse came to see me on the ward on the Thursday, and advise the other medical staff. I had told them my status, of course, but they seemed to have little idea of the implications – for example, my platelets were at 50 – was it really wise to give me blood thinning products? They were rapidly deterred from doing this, and platelets had to be sent for from a hospital some 50 miles away. I really have very little memory of all this. Vicki was there throughout and has filled in the gaps, but I just kept drifting off to sleep. I know my temperature reached about 39.7 at one stage. I was very unwell.

I went down to surgery, to find the staff ready – but no platelets. I then listened to the anaesthetist discussing different rates of flow for different tubing diameters. He must be fantastic at his job. As I told him, that was the second time I had fallen asleep while he spoke to me – and still no chemicals! The only problem with anaesthetic by boredom could be losing the will to live of course.

So – three hours later, I was back on the ward, a five inch gash in my side, not a clue what was happening, and a vague memory that somewhere in the group of faces was Vicki. Apparently, we had a conversation and I made her come for a hug before she left. The conversation must have been bizarre at best.

It’s odd how these events turn into remarkable learning experiences. For me, the learning was an insight into the nature of morphine. I know I was hallucinating, I know my perception of every event, comment and action was significantly altered. I also know that even up to now my moods are very inconsistent. I can fully see why people would want more and more – and why letting go of that altered perception could be a terrifying experience. A patient in a nearby bed – a pleasant man – suddenly became severely paranoid – he accused others of being actors, helping the staff who were detaining him at a secret place outside the hospital. His delusions were terrifying – a very bad trip.

Another patient on the ward was a fascinating person. He has terminal bowel cancer. Talking to him puts Hep C into some kind of perspective.

I came home on Sunday – the doctor would have preferred to hear about my bowel movements, but was satisfied with the vast and tumultuous amounts of wind. I just wished friends from the cricket club had been there to hear it – I would have become a god!!

I’ve now been recuperating for several days, and all seems well – as well as would be expected anyway with a 5 inch gash in my lower abdomen. Apparently, the appendix was severely infected and on the verge of perforating, so it took a while to get my temperature back down.

My emotions are still very up and down, but settling now, from some of the rather tearful states of Monday and Tuesday. At times, I have been giggling like a schoolgirl, peeping through the keyhole of the boys’ changing room. One night, in the early hours of the morning, this became utterly uncontrollable. Vicki found it hilarious – she’d never seen me do that before. The wind is also a matter which demands huge respect. Naked flames are forbidden as I worry about spontaneous combustion. And my bowels finally moved, producing something which felt about the size and shape of a family sized Toblerone.

The bottom line – getting better, slowly and steadily!

The good news is that I get to start my Hep C treatment again tomorrow. I spoke to my nurse who agreed it was best just to stabilise, without any drugs for a couple of days, and begin with the injection as usual. It’s a relief that it’s just a week missed – but I’d prefer to have missed nothing at all. Anyway – can’t be helped.

So that’s my last week. Certainly eventful – and very unpleasant. Vicki came to the hospital every day and spent several hours with me, tolerating my falling asleep, strange hallucinations and bizarre thoughts. Since getting home, she has waited on me hand and foot. No-one could have asked for more. My mother was also wonderful, giving Vicki lifts and being constantly available to help. We’ve sent her flowers already.

Anyway – that’s enough for now. Hope everyone is doing well.

Take care.

Your help needed

2006-04-12T08:52:00.000+01:00

As evidence of how tired I was when writing the last post (if you haven't read it yet - please do - a report from the recent National Hep C Network conference), I forgot to mention 2 significant areas where people could help to support work for Hep C awareness and further the aims of the Network.

Firstly, we are trying to develop a comprehensive list of ALL support groups operating in the UK, or any people involved in awareness work independently, so that the NHCN can offer support and co-ordinate all the efforts currently taking place. If you know of any groups etc, please e-mail me and I'll circulate details to members.

Secondly, we are looking for a volunteer to maintain the NHCN website. This is already set up, but needs a person with basic website writing skills to update and maintain it. This would not be hugely time-consuming to someone with the skills. It might be ideal for someone on treatment, with a bit of time available who wants to be involved in something positive, but would rather work from home and at times to suit themselves. If you're interested, e-mail me and I'll put you in touch with those who have been managing the website so far.

Moving away from NHCN - a more personal request. I have spoken briefly to someone from my cricket club about playing a sponsored cricket match to raise funds for Hep C awareness. I would really like to put together a team from people affected by Hep C in some way (either as patients, supporters or just interested parties - maybe some doctors/nurses) to play against my club. As yet, I have no fixed dates etc, but if you are interested in getting involved, let me know and I'll start to build a list. We play just outside Derby, so fairly central - maybe a brief holiday in the beautiful Peak District, combined with a game of cricket. What could be better? Again - e-mail me if you would like to know more.

There - think that covers everything - now read on for the NHCN report.

NHCN Conference

2006-04-10T17:12:00.000+01:00

This has been an incredibly enjoyable weekend.

Vicki and I were very privileged to be invited to the National Hep C Network conference. It was a wonderful experience – to meet so many people working actively and positively to support people, raise awareness and generally to improve the lot of people living with Hep C.

It was a real thrill to be with so many people with commitment, motivation and such hugely positive attitudes. Not just that, one might expect that with such levels of passion, such a diverse range of people and so many people who are very unwell (riba rage being an obvious issue), that conflicts would be highly likely. In fact, every person present is genuinely likeable and I can’t wait for the chance to meet them again, either individually or in a group. Not that there weren’t heated discussions, but these were handled in an assertive, supportive and constructive manner rather than aggressively. As a result, the outcomes were extremely positive and augur well for a long term future for the Network.

This blog is going to be a brief report on the weekend. They’re not the minutes, so may contain some rather subjective views – hopefully no-one will be offended! I also know that Ron Metcalfe and Martin Bolton will be writing up the event on their blogs. For that reason, I’m not going to look at their comments until this is written. It’ll be fascinating to compare the different perspectives.

We arrived on Friday evening, with me feeling distinctly wobbly, as I always do on Friday after my injection. The evening was very social, and a chance to renew old acquaintances (Martin and Carol, Ron and Carol, Jane and Gary, Francis, Michele, Phil) and meet many new friends (too many to name them all). We sat up quite late, chatting, relaxing and enjoying the company of people with whom we have so much in common. For those people who read the Forum (available from Ron Metcalfe’s blog), here’s a picture of Ron and Carol, Martin and Carol and Vicki and I.

Behind every man ... there's a good woman!

Saturday morning involved a swim before breakfast, followed by the sheer delight of a vast meal, which someone else had prepared. Personally, I went for the full English, followed by cereal and fruit. Vicki was more restrained – just the full English for her!

The main conference began at 11am (a very civilised time for those of us who felt tired after travelling). The first speaker was Charles Gore from the Hep C Trust. He spoke about the concerns for the future, about how Hep C issues are being addressed across Europe, and provided some fascinating statistics about the abysmal failure of the Government’s action plan. In fact, since 2004, only 152 more people have been given positive Hep C antibody tests. It shows the despicable level of commitment from central Government, PCTs and health professionals to actually doing something. Allowing people to simply deteriorate is nothing short of gross negligence. By comparison, there were complaints that in France only 20,000 new cases were reported after their campaign – still a million miles better than the UK. Good news is that the Trust has received a substantial sum of money to research prevalence and raise awareness in South Asian communities in the London area. He also referred to the publication of the full version of the Trust report, published in summary last October, aimed at getting the UK somewhere vaguely close to other EU countries in terms of provision. The ultimate aim is that treatment should be available to all patients.

The next presentation was from Munro Forster communications, who run the awareness campaign. They offered many statistics relating to media coverage from the events held so far, and expanded on their future plans. This was intriguing, but it will be interesting to see figures linked to calls to the helpline, rates of testing and diagnosis in the areas covered. These are apparently being sorted out at the moment and will be available fairly soon.

Needless to say, the speakers got quite a ‘rough ride’, with questions about the nature of the campaign, the associated materials and future plans. Personally, I feel that they are very aware from a commercial point of view, that they don’t want to upset their clients (Department of Health), and the result is the inevitable patients v. DoH conflict – with them stuck in the middle! One valuable outcome from this was an agreement to involve a patient in the strategic decision making process which charts out the focus and future of the campaign. This is very positive, and will hopefully come to fruition.

Sadly, I missed much of the next presentation, by two Hep C specialist nurses. This was because of a bizarre event, when I suddenly felt a terrible burning at the top of my thigh (no – not there!!). The keys in my pocket were red hot, as were 2 batteries which I had left there. I though they had leaked acid into my pocket, so dashed off to wash down, change trousers etc. Thankfully, it seems that there was no acid – just very hot batteries – and no damage caused.

Anyway, although I missed much of the presentation, what came across demonstrated a huge amount of commitment, a willingness to work with hard to reach groups of people, and a desire to not only react to Hep C, but to be proactive in identifying the virus, giving support, securing treatment and raising awareness. If only more health professionals demonstrated their commitment …

Following the speakers, the meeting continued with a discussion on the future of the Network. It was unfortunate that the presentations had run on longer than was planned, or it may have been possible to achieve even more. That couldn’t be helped. What was achieved was a clear Mission Statement, and, I believe, a clear vision of the future role of the Network. There’s no question, that while there is still a long way to go, the potential exists for this to be a truly valuable organisation, and I, for one, can’t wait to be part of something so important.

After this, we enjoyed a very pleasant meal, before retiring to bed at about 10.30.

The departure from the hotel demonstrated the bonds which had been forged, and there were affectionate and heartily felt farewells and promises to stay in touch.

A very productive 2 days.

Anyway – after that, we came home and went to celebrate my mother’s 70th birthday. Frankly, we were shattered. We still are. We just want to sit around, sleep and do nothing. Maybe that’s why this blog may lack a little clarity. Whatever – off to rest some more, and hopefully, by about Thursday, we’ll feel a little more human again.

London and Manchester

2006-04-01T18:56:00.000+01:00

To start with, an article from the Men's Health Forum for which I did an interview a while ago. I'm quite pleased with it - especially the case study.

http://www.malehealth.co.uk/userpage1.cfm?item_id=1842

It's been a busy sort of week. For most of it, I've felt unwell and distinctly tired. I commented to Vicki at one point that it'd be fascinating to just keep going and see at one point I simply fall over. She wasn't keen.

On Monday, having visited a school in the morning, I had booked a half day's holiday to travel to London for the All Party Parliamentary Group on Hepatology. The meeting was to consider the best location for treatment of Hep C, and there were several speakers. The main options proposed were:- through the hospital (as in most cases now); through devolved services (drugs or sexual health clinics); through GPs; at home (with nurses visiting to carry out monitoring). All seemed to have merits in some cases, and distinct weaknesses. I left with the view that matching provision to patient need would be most appropriate. Sadly, although I had hoped to ask questions of the speakers, time did not permit this. In fact, I was a little unhappy over this. No-one currently on treatment, or who has experienced treatment got to ask questions (other than the chair of the meeting - and his role was really to invite others to ask). One patient awaiting treatment was able to ask, but it was mostly the health professionals who did the talking. No-one was to blame for this - time in the room was limited - but it illustrates, maybe, the attitude of some professionals to the views of patients.

There were many interesting points made by speakers, but a couple stuck with me. Firstly, their adherence to the prevalence figures quoted in the Hep C Trust report (470,000 was quoted). Secondly the commitment of these individuals to supporting the needs of their Hep C patients. Finally, comments about how the efficacy of treatment was hugely influenced by the commitment of those responsible for treatment. This is, in some ways, obvious - no commitment means a willingness to withdraw treatment at the slightest hiccup (my experience in Derby), failure to encourage when the going gets tough, and an unwillingness to follow NICE guidelines. Evidence of this has been seen in one particular Primary Care Trust recently, where people are not being offered combination therapy for Hep C , but Herceptin is being used. It seems odd that they will approve a drug as yet not fully tested, and not advised under NICE guidance, but will withhold tested and advised drugs. Could this be down to the media? Or is it simple prejudice against Hep C patients? Wouldn't it be great if appropriate treatments were available to all - no matter what their medical need?

Anyway - an interesting day at the Houses of Parliament, and quite an experience in the 'corridors of power'. Before leaving, we saw our neighbour, who wished us well. A friend was with him, and asked where we were going. He asked if we were going to get an MBE or something - I told him I simply haven't got that sort of money to lend to our PM!! It was odd having a door held open by a man with a machine gun - but not as odd as what happened when Vicki went to the loo. Next to the loo was an important looking, large, highly polished door with 'Private' written on it. As I waited, a well dressed man, followed by two others approached the door. He got out his key, and showed it to the other two. As he slipped it into the lock, I wondered what I was going to see - private apartments, direct links to Iraq, the huge arse which tells Tony Blair how to run the country (oops - he was in Washington!!) - the key turned, and I watched with bated breath as the door opened - and they got out the vacuum cleaner. Oh well ...

Tuesday and Wednesday were all work - school visits, lectures etc. On Thursday, I was at the hospital to see my nurse. Gladly uneventful - a good chat, weight, blood tests - the usual! Oddly, I felt very well, having been shattered up till then.

I did my injection early, to get plenty of sleep on Thursday night prior to travelling to the Manchester Hep C exhibition on Friday. We decided to go by train. The station is 5 minutes away, and I don't like driving on Friday at all.

As ever, the event was enjoyable - meeting new people, and old friends - but I wasn't really up to it. For the first hour or so, things were ok - I managed to chat in that odd post-injection way, which must make people think I don't listen to them. In fact, I do listen - but sometimes I don't hear, and sometimes I forget what I was talking about mid-sentence. I know people make allowances though. Nicki did a great job with the media, doing interviews, photographs etc - she is a great ambassador. I also talked with the staff from the company running the awareness campaign, and asked if there were any figures available yet about the impact of the campaign. I know people have questioned it - but the proof of the pudding .... Apparently, although they have some very pleasing statistics available informally, these are currently being organised to show the impact in places where the exhibition has been held - calls to helplines, requests for tests, diagnoses and media coverage. I'm looking forward to seeing these.

At about 11 am we went for coffee. When we returned, I started to feel very unwell. My legs were like jelly, my head was spinning. It's the first time I've had to simply walk away and sit down - I felt awful. At these times, Vicki's support is so valuable - just to know she was there to talk with me, be concerned and generally nurse me makes me feel so much better.

We got home at about 4.30, I had some food and slept. My memory of the evening is watching the first half of one episode of the Simpsons, waking up to go to bed and waking this morning at about 9am.

I said 'never again' after Sheffield. This time it's definite!!

That's about it for the last week.

I had to smile at a couple of cartoons in Private Eye this week - a consultant telling a patient that there was no such thing as a post code lottery - it was just that his car number plate ended in an odd number, and they were only treating even numbers this week. Also, a man writing his blog, which consisted of the words 'me .. me.. me.. me.. me.. me..'. Hmm - fair comment - but I don't care. I write this as much for therapy as anything, and firmly believe that if more people wrote down their thoughts and feelings, it would be beneficial. If anyone else enjoys reading it - great!!

Take care

Two out of three ain't bad

2006-03-26T09:21:00.000+01:00

Well - week 32 of 48 - two thirds of the way there - thank goodness.

I really can't wait to start leading a 'normal life' again - get my income back up, not feel that I might be refused mortagages, insurances etc, feel like a full time worker rather than a part time visitor. Above all, to start setting up for the future.

We're now looking quite seriously for a new house, and plan to use the quieter time over Easter to put this in motion. We both have itchy feet - and not due to treatment for a change!

I've spent a lot of time sleeping this week. I tend to get in from work, allow my relative alertness from driving to die down and sleep for a couple of hours. This has been the case every day this week. Poor Vicki has to tolerate the recumbent figure on the sofa in the evening, before actually getting some time together. To top it off, I've felt quite 'off'. Not sure if it's irritability, just my brain seems to shut down when I relax and I descend into a zombie like state. Again - Vicki must be sick of repeating herself because I haven't listened first time (on the other hand, I am male - maybe that's related!).

As mentioned before, I've started logging my working hours very carefully. Odd how little of my overall job actually fits in to the time allowed. I realised this when I looked at my hours this week and realised I still had plenty to do, simply to discharge my duties. If only I was paid on an hourly rate.

Yesterday, we went to a football match. Just the third this season - I usually attend most home games - but as the cold makes me suffer so much, I have avoided it - not to mention that Saturdays aren't great days for me, and the added stresses of Derby County wouldn't help. I wouldn't say I regretted it, it was a good game, good result and a chance to let off some steam. I was reliably informed it was warm - but after about half an hour, I was shivering and shaking, totally chilled through - despite the thermals.

It's been an interesting political week too, and once again I'm led to query the figures from the Department of Health on Hep C prevalence. This is based on two reports I've read - one referring to the UK having the highest percentage of cocaine users in Europe, the other linking to drug use by 11 - 15 year olds in schools. The Government plan to pour £65 million into this. I hate to sit back and say 'I told you so' (well - I don't - we all like saying that occasionally!) - but this is why I started to write an Education Project, raising Hep C awareness, relating to precisely the age group specified. Of course, the project doesn't only relate to drugs, but to general health and safety, with several 'lifestyle/fashion' issues.

What really gets me is that these figures are produced, and we still have the DoH bleating on that we have lower prevalence than the rest of Europe. What rubbish!

I recently got a letter from DoH telling me, in grandiose terms, that their figures came from Professor Howard Somebody (not a name I really know or remember). I think I was meant to be impressed. What, however, is a professor? Usually someone who has begun work in one field and then gradually specialised into more and more refined fields. I don't know if this professor is a Hep C specialist, or simply a general hepatologist, studying one of the other hundreds of liver conditions. What I do know is that he was paid to write the 'guidance to GPs' by the DoH, and would have written to their agenda.

On the other hand, Professor Rosenberg estimates a prevalence similar to European levels, and is a Hep C specialist. His research was commissioned by the Hep C Trust (I suspect, with respect, much less generous paymasters than the DoH). It also considers a wide range of international sources, rather than only data available within the NHS.

Well - I know who I have more faith in!!

On a related matter, Vicki went to our GP to have a Hep C test last week. Once again, the third rate information raised its head. It's well known that condom use is not routinely advised between monogamous couples - but the GP asked if we used protection. She bit her tongue and decided to take the least confrontational route - and said 'yes'. She seethed inwardly and wished for a longer appointment to vent her frustration and pass on information to this well-meaning, but poorly advised, untrained and misguided individual.

Anyway - a point for conjecture. I've been considering simple tasks - having a bath, making coffee etc. I've noticed that I make a huge number of mistakes with these - just little things - putting on deodorant three times, dropping dishes, forgetting what comes next. I now think this is a result of side effects. Those simple, instinctive jobs, usually carried out by second nature in a state of unconscious competence have become tricky. I now have to give them my full focus - I can still do them, but the procedures are conscious, requiring thought and effort. The same applies to driving - I feel as if I passed my test a fortnight ago. I actually feel utterly stupid!

However - all part of the journey.

Take care.

Post injection day

2006-03-17T17:46:00.000Z

I usually avoid writing for a couple of days after my injection, as I feel so ill. Problem is I then write about it without remembering what it was like - it's a bit of a blur in general. That's why I have decided to share this time today.

We went to bed very early last night. I was yawning and starting to doze, so we took up a dvd to watch and left the cats to wander round the house. I watched less than 10 minutes before being asleep. I then slept on for some time, apparently being very twitchy (and I remember being itchy), until I shoved my head under Vicki's pillow - presumably a sub-concious effort at self-suffocation. Vicki tried to move me back, gently, but being nervy and twitchy, I responded by panicing and jumping several feet in the air. As this happened, I flung my arm out and cracked the corner of the bedside table with my hand. It bloody hurts even now! So - 2 bruises this week. After that I couldn't sleep for ages. I read my book and lay awake. Earlier today I looked at my book again. Mystery stories just don't work when you've read 50 pages and can remember nothing about it. I shall have to re-read last night's pages!

We got up this morning and I had a bath. I then came downstairs (very wobbly - but bannisters are a good invention). The cats annoyed me. One in particular as I tried to make coffee, have breakfast so I could take my riba, feed them and generally get ready. The cat was shouted at and left the kitchen at high speed. Vicki was surprised - I usually tolerate their impatience - my voice raised is a very rare thing (unless Government policies are involved).

As today is the only day we can get for haircuts, we went to my mother's for a trim. I must have looked rough - even the hairdresser commented today - maybe she just read the last post on my blog! - and I know I was shivery, shaky, constantly cold, and kept prattling on and talking. I suppose it's a way of compensating for being unwell. I can never get it right - either I just natter on too much, or no words come to my mind at all.

We came back home at lunch time and I enjoyed another slice of Vicki's wonderful home-made bread. Oddly, I don't remember much else apart from trying and failing to read. Vicki went off to make some chocolate bread - mmmmmmmmmmmmmm!!! It's resting and cooling now ready for devouring.

About 3.30, Vicki went to do her yoga. I woke up about two hours later. Apparently I looked very cute. Vicki had done her yoga, had a bath and been generally busy. I'd been flat out!

Now I've woken up, still feeling cold, very quiet and under the weather, and ready to sleep again. I shan't - I prefer sleeping at night.Anyway, I sleep for a while every day and always wake up feeling terrible. Roght now I'm in a very quiet phase. Vicki tried to entertain me with a face mask, but I didn't manage to make her laugh so that it all cracked.

I shall, no doubt, sleep again later - I'm very unsteady on my feet and light headed. Sleep is safe.

Is this a normal Friday? Actually, it hasn't been the worst by any means. One of my better post-jab days. Last week was much worse.

Enough. I just don't want to write any more. I'll be fascinated to read this back over the next couple of days - just to see what I have written!

Aren't you looking well?

2006-03-15T19:11:00.000Z

I get utterly sick of being told how well I look. Odd how people can say this, when I have lost weight, am losing hair, cough regularly and painfully, scratch all parts of my body constantly, forget words and spend half my time asking for things to be repeated as I wasn't concentrating! It carries the implication that I am functioning normally and the changes to my lifestyle are a result of wanting to do less or use my time in other ways rather than not feeling well enough to carry on as normal.

A comment was made at one point about the fact that I am involved with Hep C work, and seem in some ways to be doing more than previously as a result. Because of this, I started to think how much time I do spend on awareness raising. Since Christmas, it amounts to about half an hour every week to 10 days on this blog, attending 2 FaCeIt events for a couple of hours each (one of which I seriously regretted as I was so ill afterwards), a 15 minute teleconference and a half hour meeting with Derby Healthy Schools Team. Hardly a vast amount of time - and not really requiring the high level concentration or physical requirements of other work.

Vicki was actually very annoyed (that protective streak which most have towards people we care for). We talked about what I actually do, and she expressed her view that I tend to do far too much. She referred particularly to the amount of work I do at home - marking, planning, preparing, organising etc etc - and the times when I work - often early in the morning when I can't sleep, carrying out 'low level' activities over my 'post-injection' period - reading information, researching, sending e-mails and so on. She is, as usual, correct, and I've now decided to record approximately what I do each day, so that I can monitor my own workload, and can ensure that other interested parties are able to check up on me. Obviously, I know have to find time to do this. It's just like when I was a teacher - keep adding jobs to the workload and conveniently forget to allow the time to do them within working hours! Nowadays, time is important to me, so I'm going to keep an eye on it!

Moan over.

So - what is it about my health which limits me? This week, several things. Friday I was all over the place. I have decided to write a blog this Friday to be more specific about what happens - each week it passes as a blur of dozing and sleeping - and just sitting around feeling like hell- and it becomes a very 'foggy' time to write about later. On Saturday, we did nothing (we've stopped shopping - order everything online). I was 'under the weather, but coped. I also marked 15 pieces of work over the weekend - mostly on Saturday - but a couple on other days. Sunday was ok - rather like having a heavy cold, and I committed the sin of spending some time with Vicki - we visited the National Space Centre. Very highly recommended - a lot of fun and a relaxed, easy time.

Monday consisted of more marking, meetings, reviewing documents, sending out mailings to course participants and planning work - followed by sleeping at home and the pub quiz later - a very poor performance this week - 11 out of 30 - but still just 2 points behind the winners.

The main impact was last night. After again spending time working (references, marking again, more course details to sort out), I fell asleep. I worked from about 9.30 with a break for coffee at 12 (I worked as I drunk my coffee), then worked through until 4.30 before stopping for lunch. Meanwhile, Vicki was involved in various bits of Hep C work - forum, e-mails etc. She does far more than I do. After eating, I slept. I was awoken by the phone (you know the sort of day - either making or receiving calls constantly) - which meant I felt really lousy. On getting up, I picked up my laptop to put away, and had a dizzy spell. I get quite a few of these - usually just grab a nearby solid item and wait till I've got my head together. This time I had the laptop, an proceeded to fall, knocking over the coffee table, breaking ornaments and scraping my shin across the table before landing in the hearth. Quite spectacular really. Fortunately, apart from bruises and scrapes on my shin and knee, no harm done. It must have looked bad though - Vicki didn't laugh for ages.

Afterwards, I simply didn't want to eat - I felt nauseous and out of sorts - so just had a couple of crumpets to still my riba! I had eaten well all day though - sandwiches, sausage rolls, cake etc.

This was followed by another shock this morning. Firstly several very unpleasant 'gastric episodes' (delicately phrased I hope!). Later, Iwent to weigh myself and found that my weight had fallen to 11 and a half stone - a loss of some 5 pounds this week. I spoke with Vicki about whether or not to talk to my nurse about it, but decided to wait and see how things go. It's probably just a bad week.

Oddly, my side effects seem to have changed. They have moved away from the typical 'lows' directly around injection day to more 'ongoing' issues. As a result, I'm feeling very tired by injection day, which leads to a vicious circle - worse sides after the jab and ongoing ill health through the week.

Anyway, this feels like a really 'whingey' blog - not supposed to be, but a little stressed and using this as a cathartic experience. Hope you don't object too much.

Take care

Now ... let me think

2006-03-07T20:22:00.000Z

Now that I tend to leave a week or so between posts, it gets tricky to think about what's happened over the preceding days. I put this down, in part, to the rather disconnected feeling which treatment seems to produce - and partly down to not doing a great deal worthy of sharing on a public forum!

Last weekend mostly involved marking work - and after that, resting on Monday before working for Tuesday and Wednesday. I saw my nurse on Monday - nothing to report - all is ticking over nicely, and as I received no phone call after that, I assume my haemoglobins are moving in the right direction. This reinforces my view that treatment impacts cyclically on me - again, a drop after 6 - 8 weeks, followed by a rest, then normal again.

In fact, while marking work doesn't sound too strenuous, the concentration is tiring - not to mention my poor eyesight and not too effective glasses which meant I had awful headaches for most of the week - paracetamol has been a life saver!

On Tuesday, there was the reassuring experience of moderating marking with several colleagues. It's good to know that there were no problems with the marking - I worry that my mood and concentration might effect judgement, and am acutely aware how important the marking is to the students concerned. I felt lousy for most of Tuesday, and Wednesday when I had lectures to deliver, but not lousy to the extent of needing to just lie in bed - rather more pale and headachy - rather like a translucent image of myself than the real physical embodiment. In fact, I didn't really feel up to taking the decision to rest (and have everyone asking how I feel etc etc) - so just kept going, which is often better!

On Wednesday, Vicki went to the doctor, as she's been feeling quite unwell for a while now (dizziness, headaches, tiredness etc). It was diagnosed as an inner ear infection, and she's now on anti-biotics. Oddly, some of the side effects are not dis-similar to ribavirin, so neither of us have slept or eaten properly over the last couple of weeks. The good news is, she is feeling much better in herself - more lively and active and generally more relaxed. Of course, life being what it is, she started with a cold yesterday!

On Thursday, I rested before my injection. I was aware how tired I was and wanted to charge my batteries. I have had real problems sleeping - in fact I have taken sleeping tablets this week for the first time in ages, simply because I worry that I won't be able to cope without rest.

Not surprisingly, I felt lousy on Friday and slept most of the day. It was one of my bad weeks. Vicki was unwell too, and can't remember what happened!

Saturday was better - we got up, did housework - a major clean up! It was needed, as we'd both felt off colour since the holiday, and had done nothing but clean up after the cat who decided to have 'the runs' rather unpleasantly all over the kitchen floor. Lovely!

Finally, on Sunday, Vicki gave me a kick up the backside and we went out for a walk and to visit one of our local stately homes for the afternoon. Actually, it's not very stately - mainly ruined - but Bolsover Castle is a wonderful place - we especially liked the 'Little Castle' - a building created in the days of Charles I for people to indulge in 'worldly pleasures' - as demonstrated through some rather risque artwork and some highly excited demons (rather priapistic [look it up like I did!]satyrs - 'lustful beasts' according to the guidebook) in the fountain!! After a while walking, I became aware that I was starting to get very cold indeed, so we left before the shakes and shivers set in. It was a lovely afternoon - and we agreed that we should get out like that at least once week.

As such, that means two social engagements each week - the second being the pub quiz (equal first this week - let down in the tie break by my lack of knowledge of curling!! For next week, I'm going to revise synchronised swimming - just in case!!). We have also offered to redesign the answer sheet now the former quizmaster, Brian, has left to join our gallic friends across the English Channel. The landlord has taken over, and the questions are far more difficult (cries of 'Welease Bwian' [Monty Python's 'Life of Brian' reference!]).

Anyway - work today - despite the strike. I fully support the strike, but with part time work and health limiting the hours when I can work during the week, not to mention lack of money, I felt I couldn't afford not to work. I hate not standing up for principles, but have to be realistic about my own interests too. Of course, as there were few people around, it meant I got a lot of valuable work done - not to mention coming home and marking again.

So that's about it - fairly uneventful. I'm still itchy, but spots have now become more rash like than the large, isolated blemishes which have appeared before. They're not too noticeable (unless aggravated), which is good, as some have appeared on my face. I'll keep treating them and hope they diminish somewhat. I've also been quite irritable - probably tiredness and itchiness (Vicki's just agreeing) - but I am generally diplomatically silent at these times, and rationalise my thinking rather than responding. Not always easy (I know many on treatment experience this) - but better silent than snappy! And anyway - snappy turns Vicki into a scary creature - with ferocious claws, teeth and knees to the groin! (Not really - she has the patience of a saint - not sure which one though!).

Anyway - as I couldn't remember too much this week, that will suffice for the editted highlights - and tea's ready!

Take care

Back again!

2006-02-26T14:21:00.000Z

It feels as if I haven't added anything here in ages! Of course, there are reasons. Initially, my haemoglobin dropped to 9.1, which had left me feeling pretty lousy, and needing to go to my nurse for a repeat check the following week. Thankfully it had rocketed back up to 9.2, so while still being low, the trend was in the right direction, so no changes to treatment. Oddly, this news arrived at the same time as hearing the good news about my negative 24 week PCR.

Anyway, more taking it easy.

This wasn't helped by a case of mistaken identity, when some people from a forum I visit informed the moderator that I was another person, noted for some inappropriate activity in forums and in general. The stress this caused was huge. It's sorted out now, and I know those people were just trying to protect a very valuable and supportive forum, but I wish they had taken time to check facts first. I was quite down at that stage, and while simply wanting to put matters right, became extremely stressed - with more than a little 'riba rage' coming through. However - problem solved and another new friend made as a result, so all's well that ends well!

We went on holiday last week for a couple of days - off to the freezing temperatures, but utter magnificence of Iceland. It was a marvellous few days. Driving down was a bit of a challenge, partly because I was very 'post-injection', but also due to hold ups on the UK's biggest car parks - the M1 and the M25. The journey took over 4 hours - compared to less than 2 on the way home. However, after travelling, it was good to simply let other people herd me through the systems and settle down to sleep on the flight. I actually felt rather like a sheep - herded to each gate by the border collies and then snarled at by the alsatians at each security check. Only difference was that dogs would probably have managed the system more quickly and efficiently. However ....

Iceland is magificent. I would recommend it to anyone - not just the fabulous scenery, but the attitudes and values of the people. Apparently, the continental plates separate at about 2 cm per year - so in a couple of million years, Iceland will take over the world. Sooner the better I say!

The real highlight was swimming in the Blue Lagoon. This had been a major factor in deciding to go in the first place, as I felt it would help my itchy skin. It did, and Vicki felt the benefit, not only of a less itchy me, but also having lovely soft skin herself. We came away with numerous skin care products (half the shop, Vicki says), and got onto a bus which previously resembled a pensioners' outing to Blackpool - and afterwards looked like a school trip (ok - not quite - but a real sense of exhiliration).

The only problem was the tiredness. Each day, both of us were shattered - utterly. I have never slept well on coaches - but this time I did. It may have been the walking (Vicki says she has painful muscles in places where she didn't know she had places!!) - or breathing real air - but whatever, I still feel as if I'm recovering - very 'chemically', heavy limbed, taciturn and generally a bad tempered, miserable old sod.

Officially, I had booked last week as annual leave from work. In reality, I ended up marking 25 scripts. I also have 2 lectures to plan. Oh well - clearly holidays are an illusion. I've done what was needed though.

I think my different attitude to work this year may have bemused a few people. In the past, as a headteacher, I worked 65 - 75 hours a week with little complaint, striving to do a good job, treating my contract as a joke and with other elements of life coming second. Now it's different. My health comes first, and nothing will jeopardize that. That's why I chose to work part time during treatment. I also work in line with the requirements of my contract. Contracts have, over the years, become throw away bits of paper. No-one achieves while working to what is written down - only by grinding themselves into the floor, working above and beyond the call of duty and saying 'yes' to everything, regardless. Sorry - no longer my way. This may come back of course when my virus is cleared, but I am certain that I shall still treat work as a lesser priority - after health, family and quality of life. Compromise will be needed, but it shouldn't be a problem. What I really want is a working environment where my strengths and skills will be used to best effect and I feel valued because of this. That's not incompatible with my current situation, but without doubt, my illness has set back many of my aspirations. Right now, I feel very underconfident and concerned about how impaired my performance has been. However, in the words of Arnie - 'I'll be back'.

We had an interesting meeting a couple of weeks ago with Derby City Healthy Schools' Team, discussing the Hep C education project. It seemed to go well, but no real feedback so far. Hopefully this will lead to further support for the project - but I am starting to think the real impetus needed is financial input. We're working on it! In fact, I have done little on this over the last couple of weeks, due to work pressure and feeling lousy - again, things will build up.

So - shattered, feeling each day as if I have a lousy cold, but keeping going.

Things could be worse - but could be better too. Vicki is, of course, correct - she keeps saying I am doing too much, and she's probably right. I'm just not very good at being idle - far better at keeping going until the wheels come off. Not very wise!

Just to conclude, yesterday was my birthday - Happy Birthday to me, Happy Birthday to me ... etc etc.

Hope everyone's feeling ok.

Taking it easy

2006-02-13T13:13:00.000Z

I'm trying hard to take things easy for a week or two. It's not too easy - I seem to have various commitments over the next week - work, medical, personal etc, but it still means a bit more time to myself.

On Saturday, we went to the Leeds FaCeIt event. When we eventually found it, we spent an enjoyable few hours chatting with the representatives of the company behind the event, and meeting new people who are involved with awareness promotion and support groups. As ever, we had great chats, comparing notes and talking about the future of Hep C in this country. Everything was really positive, and it will be great to meet up with some of these people again in the near future.

Thankfully, I was rather more human than at the last event. I didn't start shivering until a couple of hours into the event. Poor Vicki was perished, as were Chris and Emily from Monroe Forster - and everyone else. In fact it was not a bad day in terms of sides. Inevitably, I was shattered and needed a substantial sleep later. Yesterday was also rather a washed out day. I was ok for the morning, but it became an effort to keep going later on.

In fact, at one stage while working this morning, I was on the verge of saying I ought to go home as I felt very light-headed. Instead, I kept going and finished what was necessary. The school has also booked me to make a presentation about Hep C in June - so not a bad morning all round.

Tomorrow, the education pack is being presented to Derby City Council Healthy School's Team. It's just a half hour presentation, which is good - although where Hep C is concerned I could waffle on for days on end!! After that, it's off to hospital to have my haemoglobin levels checked. In the evening, we plan a nice romantic meal for Valentine's Day.

Hopefully after that, a nice peaceful couple of days - dentist Wednesday, school visit Thursday - then injection and rest.

I have asked for a reduction in my work responsibilities. It's not just general fatigue, but also stress of this element of my work - when I started this year, I didn't realise that this whole aspect had been changed from the systems which worked so well before, and I find it tricky to explain these changes or work with systems which I have never been part of. It won't mean much less work, but should mean I can focus more effectively on other aspects. Staff responsibilities are changing anyway - so should be ok. Much more to it - but that's enough for here!

So - it's all a case of getting past this week and having a good rest next week - then hopefully returning to work at least a little invigorated!

Apart from that - itchy spots better, sore gums tolerable, though bleeding a lot when brushed and weight has fallen by 3lbs over the last week - despite reasonable eating!

Never mind - maybe it's the virus decaying that makes me lose weight!

All the best to everyone - take care

Another long week!

2006-02-09T18:44:00.000Z

As predicted, a busy week.

Monday and Tuesday were long and tough - the main problem is not getting proper breaks - just 15 minutes would be good - but time is an illusion at work - lunchtime doubly so. In the evenings, I was an utterly useless, sleeping wreck. I felt incredibly tired.

I suspect I now know why. I had a call this afternoon saying my haemoglobin has fallen to 9.1.

I've decided, therefore, to slow down a bit and try to get things back to normal as happened before Xmas. I have contacted work, and, with half term on the way, I should be able to have a week's total rest. It can't do any harm!

Having said that, it's off to Leeds on Saturday for another FaCeIt event. Promises to be good - some old friends to meet again, people from the Hep C forum who I've known for a long while and am looking forward to meeting and some more recently acquired friends who I'll be meeting for the first time. Should be fun. Sadly, we will miss an event in Nottingham focusing on non-responders to treatment, but relevant to everyone involved with Hep C. I had a call from Catherine at the Hep C Trust today asking if I knew anyone who would like to go to this. If anyone would like to go, e-mail me and I'll forward the details. It's this Saturday, 10.30, Nottingham, and promises to be very good.

Yesterday was unquestionably difficult. We went to Vicki's aunt's funeral. I had never met her, but knew that Vicki was very fond of her and contacted her regularly. She was clearly a much loved lady, and her sons conducted themselves with massive dignity - a real credit to their late mother. The service was well conducted and it went as well as anyone would really expect a funeral to go.

It was also a chance to meet the rest of Vicki's family. I now feel as if I exist! There was just one problem - why don't they equip Brummies with sub-titles? Maybe they do, but I couldn't see them on the black backgrounds. I think all the people were being really pleasant - but it's equally possible they were simply insulting me with smiles on their faces!

I also had chance to meet those family members who I have met before and chat with them. Vicki and I had a long chat with her brother about my Hep C. It's good to have that out in the open and discussed - then if they do ever meet me on one of my less 'normal' days, they understand why. It was also great just to spend more time with them. Not least because we are going to see the Rocky Horror Show with her sister and partner quite soon, and dressing up in a bizarre costume might have been a bit uncomfortable (no - I'm not wearing a basque, thong and suspenders. Vicki says I'm to go as Riff-Raff - type casting!).

It was a particularly tricky day for Vicki's gran. It's the second of her children she's lost. Considering her age (98), she coped really well - though she fell asleep later on, clearly emotionally drained. Before that, we had a good chat about my grandmother (who was 2 years older and lived not too far away) - and found that my Aunt lived for years just around the corner - small world!!

Suffice to say, a tiring day all round, and not the sort that anyone relishes, but with so many positive outcomes.

Anyway - jab time now - I can't justify continued blogging to postpone it!

Hope everyone's doing ok

Take care.

A bit less 'magical thinking'

2006-02-05T10:22:00.000Z

My last post ventured into 'magical thinking' (John Paul Sartre - thinking with the emotions, rather than rationally). Not a rare phenomenon - we all do it - why else would I support Derby County and Vicki support Kidderminster Harriers if we were thinking rationally?

Hopefully this week will be less of a 'stream of consciousness', and more back to considering the events generally.

It's been a tiring week - no real 'down time' from work to plan and prepare - all school visits and lectures. Next week's the same pretty much, although work is replaced by funeral on Wednesday. It will be interesting to be in a genuinely emotional situation where I am expected to support others, and I rather expect that I will 'shut off' the emotional elements. Unpredictable, of course.

I had my 24 week PCR on Thursday. All seems to be going well as far as the bloods are concerned. Even my platelets hit a record high - 64!! My nurse was amazed.

Having said that, I've been so tired. In a conversation with a colleague on Tuesday, I could not get the right words. It was very obvious to both of us - she had to keep asking if I had said what I meant or correcting me - and was very sensitive about it. School visits are tiring - I'm very aware peoples' futures are on the line, so take it seriously - not just that - they have spent thousands on their course and deserve quality feedback. I believe I am able to offer this - but take time to reflect after each visit and force my concentration levels to be as high as possible.

My post-jab day was interesting. Vicki commented that I seemed to be livelier than is normal for a Friday evening. Perhaps this was a result of not getting up until 3.30 and almost constant sleeping. In fact, I felt really rough yesterday (Saturday).

We always try to do something on Saturday - even if it's just shopping - so yesterday, we went to IKEA. I said as we left that I wanted to go quite early as I knew I didn't feel right. On the way, we nearly got killed, as a white van in the inside lane of the M1 decided to pull out, sandwiching us with a car in the outside lane. I amazed myself with my reflexes and ability to weave between vehicles. Somehow, no-one was hurt, but it has to be the most dngerous driving situation I have ever been in. Vicki felt terrible and was clearly unnerved (or in shock) by the whole business.

I suspect I was affected more than I let on as well. I started with an odd side effect which I've had a number of times, which is tough to describe - but I'll try.

Basically, I feel full of chemicals (as I know I am!) and as if it is they which are in control. Almost like a long-term light-headedness, but alongside a strange taste in my mouth, a feeling as though something chemical (not blood) is pounding through my head and a tingling through my whole body. It's really peculiar. It doesn't stop me doing things, but tends to result in a detachment from the real world.

Later, there was an odd incident as I got out of the bath. I had a slight wobble, and pulled the towel rail off the wall (third time now!). Having gathered my senses, I got a tiny screwdriver set from the bedroom to fix it. I placed the base which holds the blades on the floor and selected the parts I needed. As I fixed the rail, I felt a slight pain in my foot. I finished the job and looked to see one of the other blades sticking out of my foot. As I removed it, blood splashed on the carpet and I began to bleed more than I like too (not too bad - but I have a paranoia about my own blood - not surprising as it could infect others). I managed to sort it all, but it was symptomatic of a clumsiness which persisted for the rest of the evening - as if my fine motor control was impaired. I just seemed to drop everything, stumble and be generally useless. I suspect this may be down to the adrenalin rush from our 'near-miss' earlier.

One piece of good news was about my book. Some of you may remember that I received the contract a long time ago, but had to let down my publishers, as I didn't feel I could work to the deadlines or produce the necessary quality of work. I assumed they would let it drop until I contacted them. In fact, they were in touch this week, offering an extended deadline until July 2007. Perfect! So - I may yet appear in print - and who knows, 'Motivating Pupils in the Primary Classroom' may appear on the bookshelves alongside other educational classics like .... er ... well .... you know ... those other boring books that teachers read.

I need to take things easy next week - and hopefully, after Wednesday, I can do. With any luck, this will be the recharge of my batteries which I need in order to face the second half of tx in the positive frame of mind which is necessary.

Just a final point, we're going to the FaCeIt event in Leeds next Saturday, and already have good contacts with some local hep c activists there. Should be a good day - would be great to see you if you can make it!

Being philosophical

2006-01-29T09:52:00.000Z

I feel as if I've had a rather introverted week this week.

I have worked as normal - a couple of more challenging matters to sort out - I hope I was effective, but I know that I would have done a better job in the past. A colleague sat in a lecture and told me I had covered all the necessary information - that was a relief - and I feel tired. So tired.

In the middle of the week, we had a family bereavement. This was very sad. One of those family members who had always been close but rarely visited. She had been unwell for some time, having previously been a fun, lively person, she had changed to almost a reclusive lifestyle and had severe mobility problems. Philosophically, perhaps she is happier now she can be her true self again. I'm hoping the funeral is not a Friday. Not only will I feel unwell, but I tend to be rather 'up and down' emotionally. In fact, the Simpsons keeps having this effect on me with some of the 'feel good' endings. The same is true of other programmes - I don't actually shed tears, but neither do I trust my voice. Oddly, it is these absurd times when this happens, and not when confronted with genuine tragedy. Then I seem to shut down and go through the motions.

Next week is week 24. Half way there. PCR test to take place again. I think it's these significant dates which have made me reflect on my time with Hep C. I have thought about how I may have contracted it - injuries, accidents, jobs where health and safety could be a risk (I was once a cleaner in a night club for bikers, and I worked at a drop-in centre for adults with special needs, some of whom used drugs and regularly had epileptic fits which resulted in injury). I considered the fact that while I never injected drugs, I knew a fair number of people who did (or I'm fairly certain did). I wondered about the time when I was mugged and bled extensively and the time when I acted as a dental nurse when my father gave emergency treatment to a friend who was on the Motorhead roadcrew. A million and one possibilities, and I keep wondering if I might be responsible. I just don't see it.

I have also wondered what might have been. I have had a fairly successful career to date - what if I hadn't had some of that time off? What if I had been feeling better more of the time? I had several hospital spells during my career, not to mention illness which I now believe was Hep C related which led to time off or poor performance. Also, how affected was my general performance, in ways which I didn't recognise? For an 'asymptomatic' illness, it took its toll. I suspect many have similar thoughts. I also wonder about my cricket. At the time when I believe I contracted the virus, I was playing at a very respectable local standard. I wondered for years, though, how some people seemed to have energy and stamina to keep going when I didn't. I put it down to lack of fitness, and later to age and weight. I think I was wrong.

I'm also keenly aware that others with genotypes 2 or 3 would be finishing treatment now and can't help feeling some resentment. It's unfair, unreasonable and irrational. Everyone suffers with this whatever the genotype. I hope it never shows. To say 'You only did 24 weeks - what do you know?' would be utterly absurd and pure sour grapes. Perhaps it lingers with the virus still in my system - fractionally there, undectable, but gnawing away unhealthily from within. Don't worry - my rational mind tells me it's stupid and I try to keep that thought even when feeling rather down.

I have considered how I was treated at Derby City Hospital following diagnosis, and wondered if the consultants were acting in my best interests, but I couldn't see it. I have concluded that was not the case. I believe they were not competent to treat Hep C and their judgements were clouded by arrogance in the light of challenges to their knowledge. Had they admitted their limitations, I would have respected that. Thank goodness I moved somewhere where treatment was better. What's really scandalous is the inability of the health service to respond to these issues - how many more people are suffering because they simply don't know how to put their case?

Anyway - philosophy nearly over. I feel unlucky and maltreated - and sorry for myself. But shit happens (I wanted that quote on my FaCeIt picture!). What I resent is the lost time. I have always believed that time is the most valuable commodity we have, and to look back at all the waste really irritates me. So now I need to cram twice as much into my future and try to do something positive. While on treatment, that may be rather limited - but once finished, life will be lived to the full.

Poor Vicki. She has had to put up with long silences, sleeping and a not particularly happy partner this week - not to mention the occasional bouts of obsessiveness. It feels so good to know she understands and will support me with this in the knowledge that when the virus is cleared, she will, bizarrely get to know the 'real', virus free me for the first time. I hope it's worthwhile. Once again, my respect for partners has risen. I have Vicki for support - she has no-one, except those wonderful people from the forum who are so marvellous with their help, advice and simple communication. Yet they're all in the same position. I plan to spoil Vicki once the virus is clear (shh ... don't tell her) and let her know how appreciated she is.

Well - hope I haven't bored you rigid with this 'stream of consciousness' - just getting it out of my system. I'm no less positive - just reflecting on reality as it is at the moment.

Take care everyone

Having a life

2006-01-21T18:30:00.000Z

Since starting tx, we have enjoyed very little by way of social life - things have revolved around side effects, work, shopping and the pub quiz. In general, that's enough. The only variable is work, and that can be a problem.

This week, I have been really tired - probably as a result of last week, but have been generally ok. During the week, I have made several visits to schools to see how students are going on - and thankfully, so far so good - no problems/issues - keeps things easy for me. I had a fascinating chat at one school with someone whose husband has Hep B. It was fascinating to listen to the experiences - severe ill health, failed treatment, other family members diagnosed, a 4 year training gone to waste as he couldn't continue, followed by a period of hardship as all his dreams went up in smoke. Thankfully, things are now back on track for this family - so good to see people overcoming adversity.

On Tuesday we visited a friend who is a wonderful cook, and was cooking for us and her new man for the first time. It was a magnificent meal - but I felt so guilty about not being able to eat too much. Vicki, however, coped superbly and could barely speak, let alone breathe or sit comfortably for hours after. The highlight was the almond sponge, coated in chantilly cream with peaches, strawberries and cherries. Wow!

Wednesday was our trip to Manchester to support Burton Albion. OK - they lost heavily, as expected, but what a fun evening. Had I written this earlier in the week, when I was highly irritable, I would have commented on my disappointment at Old Trafford and the Manchester United supporters who were only heard when their side was 4 - 0 up. However - at this point, I can't be bothered!

So - every day was busy, and this week looks little better, although evenings are quieter.

Post-injection time this week has been very quiet - deliberately, so hopefully I will have saved energy for the next few days.

Side effects in general have not been too bad - the usual spots and tiredness, and my gums are bleeding more than normal - not to mention the 'tiredness' nosebleeds I seem to get. I have also noticed some absurd emotional responses - most bizarrely to endings of the Simpsons on several occasions ( as Homer said: 'I'm going to the back seat of my car with my wife, and I won't be back for 10 minutes' - I welled up inside - maybe at the romantic ending, maybe at Homer's sexual inadequacy - I'm not sure!). This irrational emotional behaviour is something I need to watch - especially at work, and it does concern me a little.

I've actually been worrying if I'm overdoing work at the moment. I seem to have very little real life - and operate on a basic auto-pilot, which means I go through the motions of normality, but really remember very little about it. I was gratified, however, to get an e-mail from someone at last week's FaCeIt event saying that even if I had felt rough, I was as coherent as ever - I hope it was a compliment - but maybe I'm never very coherent!!

Anyway, another week coming up, and despite quite a lot of work, I hope that reduction in other commitments will enable me to rest and recharge my batteries - it's much needed right now!

Hope everyone is feeling well - take care

Never ... ever ... again!!

2006-01-14T19:21:00.000Z

Yesterday we went to the FaCeIt event in Sheffield.

I had made a huge mistake. Having spent the last couple of Fridays (post-injection day) pottering and doing a bit more than usual, I had believed that I would cope adequately with standing in Sheffield and chatting with people - especially people who are sympathetic to the impact of treatment. I was totally wrong.

Thankfully, I had been able to get a lift - driving would have been impossible. On the way there I slept for much of the journey, getting very edgy as we couldn't find the venue instantly. It was cold. I shivered and shook, despite five layers of clothing (2 thermal t-shirts and a fleece included). I felt drained and worn out. We went to the shops simply to thaw out, and took part in a Walkers' crisps survey for the same reason. I then had to sit and rest in a quiet corner for a while.

For the rest of the day I was so ill. I couldn't stand up without help, the stairs resembled the North face of the Eiger (and took as long to mount), I couldn't eat. Enough - it was awful!! On the way back, we visited my aunt. I sat shivering in a corner, barely communicating - and now feel so guilty. My aunt is a lovely lady and I see her all too rarely.

Apart from that, it was wonderful to meet new people and see old friends again. Tom, who fronted the event, is a lovely chap. I wished we had been able to join him for a coffee and a longer chat. However, I directed him to the forum, so maybe we'll have that chance in future. Another new meeting was with Docmike from the forum. Having read his sensible and well-informed comments there for so long, it was great to meet 'the real thing'. He is as charming a man as those of you who have read his comments would probably expect. He was dashing off on holiday and we almost missed him - but he drove back specially to say hi.

As well as new meetings, there was the pleasure of meeting Michele Martinoli again - it's always a delight to see her - such a shame that we don't meet up other than at these events. I get the feeling that if a few people with such genuine commitment were to meet up, not only would it be a marvellous event, but we could really produce some plans to move Hep C awareness forward.

As well as Michele, it was great to see Emily and Chris from the company who run the campaign. I have commented before on their commitment to this campaign, and again this was hugely apparent. Poor Chris didn't have a warm coat and was shivering as much as I was at first (before people disappeared and came back loaded down with scarves, gloves etc - and he got a jacket from somewhere!). Also in attendance was Gerry - a Civil Servant from the Department of Health, who has attended almost every event so far, a representative of Schering Plough, one of the specialist nurses from the local hospital and the consultant. A great range of people, who reinforce my view about how genuinely pleasant and committed everyone who attends these events seem to be.

I know some have commented that the whole campaign is too little too late - and few would argue with that - but in fact, one of the great positives which may be a result of the limited funding, has been the forming of networks of people from the Hep C community. Had the money gone into a TV ad or newspaper ad, it may have had limited duration, and not involved those of us who have (or had) Hep C. I wonder if the Hep C forum would have developed, the blogging community would have taken off as it has or people would have their current support networks. It's a point for conjecture - the blogs may have happened, but would they have got the audiences etc? I would certainly not have been involved in the same way!

Anyway - poor Vicki was wonderful. She felt rather unwell herself, but did everything for me - finally half-dragging me off to bed where I flopped in a pathetic heap (head under the pillow) and slept. I wonder if any others have my habit for a couple of days after injection, where I sleep in the most bizarre positions. Vicki has awoken a couple of times to find my feet next to her head (yuk!!) - and I know it must seem really peculiar.

Haircuts today - I felt the need to thin out my self-thinning locks to make them more in keeping with a mildly thinning middle aged man. Vicki's hair, of course, looks lovely!

I plan to rest tomorrow, as I have a busy working week next week and want to be prepared for it - not to mention Manchester United v Burton Albion on Wednesday!!.

So ... Friday's are out in future. We had planned to travel to London for the day (Friday) before we go to Iceland, and visit a few people - we've now decided that if our holiday is to go ahead as planned, we're far better doing as little as possible on that day. Being unfamiliar London travellers, we would probably mess up our transport back to the airport or not get on the plane as I look too ill or have a lousy holiday as I spend the first 2 days recovering. So - less is best!!

Oh well - we tried it - and failed! Never mind - one more lesson learned.

Hope everyone is doing well.

Curious machinations

2006-01-10T09:51:00.000Z

I think this week's injection hasn't been too hard on me. It's been a bit tricky to tell though. I feel as if I've operated on auto-pilot, doing things, sleeping, but really feeling very detached from the world at large.

On Thursday we did a little more sales shopping before heading to the hospital. All seems ok with my bloods - haemoglobin steady, platelets still very low but ok, everything else fine. I noticed that I tend to bleed more when having blood tests now, but that's not important. My weight is also stabilising at about 12 stone (168lbs) - about 20 lbs below my starting weight on tx, but 30lbs above my lowest wight when my symptoms were so acute.

We got home and took down the Christmas decorations (the cats are distraught - they had just mastered climbing the tree and were attempting to dismantle it themselves), and managed to put off my injection as long as possible (my delaying tactics are getting increasingly feeble - this time it was waiting till The Simpsons had finished). The evening was typical - I do the jab while we prepare food and eat immediately after. We then sit and watch TV until I fall asleep - usually within a couple of hours. This week was no different - but when I went to bed later, I was repeatedly woken by itching and an ucomfortable stomach.

The following day we got up, and I seemed to have a manic burst of energy. Vicki tends to use Friday as a 'sorting out' day while I doze and rest after my first couple of hours of relative humanity in the morning. This week, I started tidying the living room, and then went further and moved the furniture around. I finished up with a bad back, utterly knackered and very sore muscles - but we have a re-designed room. The main effect of this is a better view of the TV and direct lines to the remote sensor which saves the bizarre 'cobra dance' we performed whenever we wanted the volume up. Our office area is also re-organised now, making it almost useable. While this was going on, Vicki sorted out upstairs, so we have a nearly new house!

Then I went to sleep for most of the day.

On Saturday it happened again - this time the back bedroom got it's come-uppance and is now a comfortable sitting room and yoga space (beloved by cats), rather than a dumping ground for any junk we can't put elsewhere. This involved many trips to the loft - but we did it, and are very proud of the results.

I didn't sleep too much after this - actually, headaches, itchiness and stomach problems caught up with me, so I sat in a stupor for the afternoon listening to the FA Cup soccer (of which more later).

In fact , my worst sides this week have been digestive - a really nasty nausea turn in Tesco yesterday, possibly a result of the appearance of their low fat healthy eating chicken tarka (it's like chicken tikka, but a little 'otter - sorry ...). I have also had increasing pain in the right side, very sore joints and muscles and the revenge of the itchy spots. I know these stem from the riba, but I wonder if interferon exacerbates them. It sounds quite a lot, but these are more irritating than a real problem - maybe my hyperactivity was mainly to distract from these - at least I feel we really achieved something! I also joined Vicki for a little yoga, which was nice.

On Sunday, we had a big day - Burton Albion v Manchester United in the Cup. We had managed to get tickets (it's who you know ...), and I had looked forward to the game for a while. As it turned out, it was one of those wonderful days when the underdogs were magnificent - could easily have beaten players whose individual salary is probably more than the the entire Burton team's and finished up with an evening at Old Trafford next week. We will be going to that game too. I've followed Burton on a part-time basis for years, and to see such success was a wonderful, and emotional experience. I'll resist the temptation to pass comments about questionable refereeing decisions, and to make sarcastic remarks about Premier League players - I've said it all already!

The only real issue with this was that both Vicki and I were shattered when we got home, and I need to have a bath simply to unfreeze myself. This is true whenever we go out - I get chilled, shiver and shake and need to thaw in a warm bath for half an hour before normalising. A slight concern as we have just booked a holiday in Iceland - partly for a break, but mainly so I can try out the waters of the Blue Lagoon on my itchy skin - I have some of their bath products, which are wondeful (but costly), and it seems a good idea.

Anyway, yesterday I marked a large amount of work and set up all my visits to students in schools. The result was a very long day's work, and terrible eyesight and headaches after a while - but it's done which is the main thing. We ended up not getting dressed until about 3 pm, and being shattered for the rest of the day. We almost didn't bother with the pub quiz, but were glad we did - 3rd is ok, and won Vicki a bottle of wine (why are all the prizes alcohol related?).

So - we're shattered, busy, but could be worse. I even had energy to see off a marauding cat which had chased our two delicat little kittens under a bush. They now see me as a fellow defender of the territory, so I shall probably be called on to repel borders until they grow into the finely oiled peace keeping force we hope for.

Anyhow - off to work now. Another pointless meeting with occupational health - but it keeps them happy.

Hope everyone's doing ok. Take care.

The sales!!

2006-01-02T21:59:00.000Z

It's been fairly quiet since the last post - we went shopping in the sales today, but have basically been resting - with a lot of sleeping.

At last, my itchiness seems to be easing. It's still there, but the spots look less angry and I got a good night's sleep last night. To counterbalance this, my mouth has become more painful. Other than that, no real change with the sides - just tired, sleeping too much and slurring my speech more than usual - I feel as though my speech is becoming very idle - as if I can't be bothered to sound words correctly. Never mind - it'll sort itself out!

Anyway, Vicki and I plan to go to the next FaCeIt event in Sheffield. Unfortunately, it's on Friday 13th January - not only a bad date, but the day after my treatment. I know I will feel ill, and if I had needed to drive, would not have considered going. However, we have been offered a lift by my mother, who plans to drop us off and visit the sales! If any of you are able to come to the event, it's being held at Fargate in the centre of Sheffield, and any support is always well received.

Doing some work tomorrow - seems rather early in the year, but hopefully can resolve a few minor issues. It will probably be the impetus to get me working at home as well - I plan to have most of my lectures prepared and have my diary filled with school visits by the end of the week - but it's not too urgent, just a stress avoidance tactic for the future.

So - rather dull, but thank goodness for that! Sometimes a dull life can be very peaceful and pleasant!!

Resting

2005-12-29T10:39:00.000Z

Well - it's over for another year! Actually, it seems to have passed as a complete blur, and since Boxing Day, I have felt incredibly tired and seem to have spent the whole time asleep or in a stupor.

It began with the good news that my haemoglobin levels had risen from 9.5 to 10.0, so no need to alter my medication at this point. Apparently it had been a trend over the last few blood tests, but seems to have bottomed out now. I know that I should be relieved - keep fighting the virus, beat it once and for all, but there is a part of me which is screaming for a break - just briefly - from the brain-fogged, walking zombie with painful, bleeding gums and itching, ring-worm like spots down both sides of my body. I can fully understand how depression becomes such a problem. Given an exising pre-disposition, or challenging personal circumstances, I know that the constant barrage on my system, and the permanently ill feeling would drive me close to the edge. What keeps me going is simply doing things - shopping, work, this blog, visiting family and friends, the pub quiz on Monday, cooking, tidying, talking to and being with Vicki. I also know that right now I am hardly great company. I know I am irritable, I know I find it hard to concentrate and my social skills are distinctly limited. I don't know why Vicki puts up with it - but every day, she's there, supporting, helping and keeping me going - and letting me sleep and rest as needed.

Anyway - Christmas was pleasant. Not easy to meet the family for the first time, but everyone was very welcoming. Dinner was enjoyable, and the evening was spent mostly with Vicki's brother playing his guitar and making up various songs. At least it meant minimal conversation, and I was able to simply switch off. Oddly, no questions were asked about my health. I suspect this was tact, but I hope my refusal of alcohol, small appetite and general lethargy aren't attributed to anything sinster. I doubt it - just not the time or place to talk about it.

On Boxing Day, it was my Mother's turn. Things went less well - even before our arrival. The cats had half the decorations off the tree - then started climbing it. Sheba then lost her collar, which took half an hour to find, suspended from the main stem of the tree! As the cats were invited for Boxing Day, we loaded them into baskets - only for Ebony to be sick half way there!! On arrival, they disappeared and hid, refusing to re-appear. Eventually, we took them home, and went back alone. Oh well... best laid plans etc. The rest of the day was spent eating and chatting, and I suspect we would have preferred to leave earlier than we did, had Christmas duty not intervened.

Since then ... mainly sleeping and relaxing. With a major shopping trip yesterday. Vicki now has clothes to last for the next 5 years! My plan is to continue this vegetative life style until New Year's Eve - not difficult, as it's injection this afternoon. We plan to spend New Year's Eve in the local pub, which should be pleasant. We anticipate just the regulars, and not too much of a crush.

That just about sums up the last few days - I suspect it reads like as much of a blur as it felt. My head really isn't very together just yet.

Finally, just to wish you all a happy, and hopefully healthy (or more healthy) New Year. To be honest, for me, New Year means keeping going and making a real new start once my virus is well and truly obliterated - towards the end of 2006. Whatever - what it relly means is finding and taking new opportunities and preparing for a much brighter future.

Yule Blog!

2005-12-22T07:14:00.000Z

Well - yesterday was the midwinter solstice - that celebration of light and re-birth held by our pagan antecedents in the depths of Winter, full of celebration and excess. The bit, I suppose, which many dislike (or disapprove of) about modern Christmas. Personally, I've never felt happy with the way this ancient ceremony was hi-jacked by the Christians and moulded to their way of celebrating. I believe, very strongly, each to their own - if dancing naked round a stone circle lights your candle - great! If it's a quiet time with family, reflecting on Christ's birth and the sins of man - have a peaceful time. What I really hate is those who set out to get blind drunk, moan they haven't got enough money, and forget that celebrations are not solely about themselves. In some ways, that makes my first alcohol free Christmas rather nice - and I don't feel the pressure of false jollity - just a time to relax and fit in with others, while always having ill-health as an excuse to avoid things I'd rather not do. It's also a chance to reflect on where I am now, and I believe that Hep C has really helped me to take a look at life from a different angle, and has in fact made for several life-altering decisions, none of which I regret. On the other hand, after dinner, it's more likely that I will fall asleep on the sofa next to Vicki's grandma!

I went to hospital yesterday about my haemoglobin levels - they have fallen steadily to 9.5, and are being monitored in case the trend continues. If they have fallen again, my riba will be reduced or I will have a break from riba for a week before starting on a lower dose. I'm reluctant to change anything, as tx was going so well - but clearly, no choice if I'm at risk of further problems - I'm just relieved there's no panic response. I'm waiting on a phone call today to confirm what's happening. Who knows, a break might give chance for my itchy spots to ease (they seem to be spreading again - I have them all down my right side, with a few on my left, and one very irritating one on my right eyelid) and help my gum infections to clear up (very annoying for the last couple of weeks, and within a hair's breadth of going to the dentist and begging for anti-biotics). A few positives anyway.

So ... all set for Christmas. Took presents to my mother's last night, off to see friends today before my injection this evening, and a couple of days enforced idleness before the rigours of Christmas Day itself, followed by Boxing Day. Doubtless, as it will be the first time I have met Vicki's family, there will be much discussion about my health, which I don't mind - so long as people are open and don't feel that they can't ask questions for fear of causing offence. I just need to make sure they know the full story, rather than hearing what I have and relying on rumours and poor information to form their views. I can see it being rather tricky - I'm sure as hell not what they're going to expect!

Anyway, it's unlikely that I shall blog again before Christmas - so to all of you out there, have a wonderful time enjoying the celebration in whatever way you choose - above all, ensure that it is a time of peace and happiness for you and those close to you.

Resting at last

2005-12-18T10:12:00.000Z

I had expected a really tough week at work last week. I had lectures every day, and knew that I was feeling rather off colour. In fact, it wasn't too bad. The lectures were fine, and a colleague's absence meant that I was able to double up a couple of groups and finish early (students were as delighted as I was). After this, a double booking on a room meant I had to cancel the week's final session. Again, students as delighted as I!!

My injection didn't go too well. For a start, I was tired when I did it, and my hands were shaky - so I scratched myself around the injection site when removing the needle. I think my tiredness left me just wanting to sleep, and to be honest, Thursday evening and Friday are a total blur. I think I needed sleep, because Saturday was not too bad. After tidying up and shopping I felt tired and had a sleep, but on the whole, I was ok. Waiting now to see what Sunday brings - so far, so good.

I had the job of calling my brother in hospital yesterday. He has a huge history of health problems - diabetic, no pancreas, many other ailments (I suspect the liver's none too good) - but this time, he has had a severe infection following a fishing accident with a float in his finger. I've told him he needs to take up something more sedate now that he's turned 50 - but some people never listen!

The accident happened in July, and he is now in his third week in hospital as the infection reached the bone. Unfortunately, he has now been told the finger will need amputating. There are of course, many openings for jokes. I started with saying it's a bit extreme just to get a part in the Simpsons - and suggested that if I ever become jaundiced, we could form the perfect composite foil to Homer. I also moaned that he won't appreciate the gloves I got him for Christmas. It was one of those typical unsympathetic 'bloky' chats which hide a lot of serious undertones, and are designed to get a smile rather than sound uncaring. At least this way he should be out of hospital for Christmas - otherwise it'd be anti-biotic drips, rubber turkey and nurses in santa hats (hmm ... maybe he would enjoy it ....).

We spent yesterday peacefully - cats had post-op check at the vets, we did the shopping (Vicki's making mince pies - it started with some for Christmas Day at her sister's, and then I stepped in - I think we may have the European mince pie mountain by Christmas Eve - and I'll have eaten it by Boxing Day). We printed off some pictures to put in a photo album as a gift for a friend, and designed a Christmas Card from the cats (I know ... how sad ... but fun and very cute!). We then watched a Nightmare on Elm Street. That guy needs to be careful - I think he's on treatment - the irrational rage, skin problems, losing hair and only being awake when everyone else is asleep. Obvious really - Freedy Krueger has Hep C. If only he'd use his high profile to spread the message.

Anyway, preparing for another quiet day. If you lose the will to live later, I posted a very brief demolition of the HCV Report produced by the Health Protection Agency. It's on the Hep C Forum, and although very lengthy, covers only as much as I felt readers would want to cope with. I could have gone further into the iniquities and inadequacies of this report, but frankly, it's rather below contempt.

I suspect that writing it was highly therapeutic for me in fact - I probably transmitted several days worth of irritability into the document. In fact, it was nearly as good a release as trying to park at my hospital or visiting Tesco on Christmas Eve!

Hope everyone is keeping well - take care ...

Minor setback

2005-12-14T19:18:00.000Z

Having felt rather unwell since last week, and definitely suffering from rather debilitating side effects, I had concluded that I had 'hit the wall' again. Perhaps that was partly correct, but I got a call yesterday from my nurse to let me know that my haemoglobin had fallen and I need to go back for more blood tests. She says not to worry - so I won't - but it's a slight worry. Maybe it feels worse because everything had generally been going well so far (well - platelets a touch dodgy, but not worryingly so). I suppose it may have been because I went to the hospital in the morning, not long after taking my riba (actually, about 45 mins after!). I'll see what the next visit brings - worst outcome is reduction of ribavirin dose - not what I want, but I'll do as advised. Actually, the way I've been feeling, it's not a huge surprise really - rather a relief to know there's a traceable reason why I've felt worse than usual.

Positivity was not helped by hearing of a friend for whom treatment has been unsuccessful.

Having said that, a couple of minor setbacks aren't a big problem, and I still feel pretty good. However, being positive is great, but these things prevent that becoming blind faith - a dose of reality!

We've finished our Xmas preparations now. Buying each other gifts yesterday, and now we're ready to put our feet up and mock those running around like headless turkies looking for last minute gifts. After our trip to town, we exchanged cards while we put our feet up. How bizarre is it, that we had bought each other the same card! To top that, we had just been to Tesco to get more wrapping paper (and food of course!). We both wandered to different displays, and turned round holding the same paper! The woman pushing her trolley towards us looked totally non-plussed!

Anyway - just one more day of lectures at work - and I shall be so relieved to be able to relax. I really feel so, so tired. It means, however, that I will only have missed one lecture through illness, though several others due to GP appointments, dental visits, hospital etc. I think just one lecture to re-arrange is pretty good, though.

Hope everyone's feeling good.

Presentation 2 - first feedback

2005-12-10T09:37:00.000Z

After the first presentation on Monday, Vicki and I were working with another group of children at the same school.

I had decided to make a couple of slight changes, but nothing much. Firstly, I was handed the evaluations and feedback from the first session. The response was incredibly positive from staff and pupils alike - the main complaint seemed to be that there was too little time! Inevitably, there were a couple of minor misunderstandings - but the quantity of information made that predictable in some cases. Basically I was delighted.

The second presentation seemed to go well. Vicki became increasingly involved, doing a great job of supporting children's discussions, answering questions and correcting information. Things ran more to time and the quality of questions and responses was excellent. The teacher has promised to let others know, and recommend the presentation to any who are unsure.

I've already decided that, despite the really pleasing feedback (more about that when I have collated and processed it all), there is a need for a more kinaesthetic approach to the information about transmission routes - not the drug elements, as these are well covered by other drug education teams, but some of the basic health and safety points - needles on the park, piercings, recently spilled blood, first aid etc. This should be simple health and safety - not to mention generic to any blood borne disease.

I've also sent a copy of the presentation to my nurse for her comments, and asked if the hospital may have a space to display a few of the excellent posters which the children produced.

So - very busy - and I have rather felt the consequences! My injection took me the same as usual - basically spent Thursday evening and Friday afternoon and evening falling asleep, taking paracetamol and feeling generally lousy. At one point, I was totally unable to find a comfortable way to sit which didn't give me a headache, stomach pain etc, and ended up upside down on the sofa falling asleep. Vicki, of course, took a photo and the cats were fascinated.

In fact, Thursday was busy all round - the cats went to be spayed, I was at hospital and we had the presentation before collecting the cats later. They were strictly advised to rest and take things easy. In fact, they've been going beserk, and how they haven't opened their incisions is beyond me. The sight of Ebony perched on top of the living room door was extraordinary - a first for her - and she couldn't get down. Participation at bath time was also a concern, as Sheba sat on the edge of the bath with her tail hanging in the water - and didn't seem to mind at all!

I had a real attack of riba rage yesterday - with Nat West Bank again. These incompetents infuriate me. Cutting a long story short, in February, I paid off my credit card, but due to errors by Nat West the payment was returned. However, the payment and return of payment appeared on separate statements, although there was still 3 weeks to the end of the first one. It appeared therefore, to anyone looking at the first statement that the full amount had been cleared, and I had spent the money all over again. This is now the one stumbling block hopding up the full resolution of the financial aspects of my divorce, and will take time and solicitor's fees to resolve - all due to the inept banking practice of Nat West/Royal Bank of Scotland. I was furious with the half trained call centre clerk who didn't have a clue what he was doing - not even knowing the address of the head office. You don't want to hear any more - believe me, it got nasty - even the cats were scared of me - Vicki laughed, of course!

In fact, this incident really wore me out completely - I was shaking and like a coiled spring for some time after. All down to an incompetence starting in February because Nat West (Credit Card), Nat West (Personal Banking) and Nat West (One Account) refuse to communicate with each other - even though all belong to Royal Bank of Scotland. In my view, using the same letter head amounts to mis-leading the customer, and is no more than a corporate lie. Amazingly, I placed all my banking with Nat West 20 years ago so that I had a cohesive financial set up - and since Bank of Scotland took over, it's become a farce. I can't wait to be rid of them.

Anyway - the ups and downs.

At least Xmas is nearly sorted - and once all those duties are out of the way, rest relax and enjoy the break.

First presentation

2005-12-07T20:31:00.000Z

On Monday, I was working with a class of 30 ten and eleven year olds, hopefully developing their awareness of Hep C.

Their response was fantastic - they were keen, responsive, enquiring and thoughtful. I really hope it will make some difference - even if it's only to one child! Oddly, interest was helped by the recent demise of George Best, and their heightened awareness of the importance of the liver. Not only this, but their mature response and connection with the emotions related to medical conditions was perceptive and sensitive. In part, a tribute to he fact I was in a school with an excellent, inclusive ethos.

There were some issues I need to address. Timing was very tight - I had to skip a couple of bits (mainly because I mis-read the plans at a crucial time!) - we started a couple of minutes late, and had a slightly longer break than planned. It wasn't the end of the world - but I need to sort it out for tomorrow. Vicki was very helpful, addressing questions, recording information and generally organising and doing those 'unsung' jobs which are so important for anything to run smoothly. We were both nervous, but for Vicki it was a new experience - she says she loved it - especially a first visit to a staff room to discover that teachers are, in fact, not too far from being human once away from pupils. We plan to increase Vicki's role so that she can, in due course, take over some parts of the presentation - eventually presenting it herself. She will be great at it!

To other matters ...

After last week's wonderful news, I had not expected my sides to be so bad - I had been considering that they may, in part, have been exacerbated by my psychological state in the past. I was very wrong! Despite feeling great, I had a lousy few days. Headaches, extreme fatigue, pain, itchiness and several very unpleasant 'gastric incidents'. After the usual few tricky days, I was thankfully ok for Monday's presentation. On tuesday, however, I felt awful. I went in to work and delivered my morning lecture, but when I got home I felt unsteady on my feet, my mouth was horribly sore and I just wanted to sleep. I think I slept for several hours and woke feeling a total detachment from life in general. Today was not dissimilar - just longer work hours and less sleep. Annoying, as Tuesday and Wednesday are normally not too bad.

I think I reached another one of those 'walls' which seem to occur every 6 - 8 weeks. Just one more week to get through until I can have a complete rest - then Christmas!!

Despite everything, it was quite a relief to know that the sides don't seem to be psychological, regardless of the depressive sides of interferon.

Busy day tomorrow - cats to the vet - time for their 'snip', straight on to hospital for an appointment with my nurse, then to school for another presentation - then home, injection and sleep!!

Hope everyone's feeling good. Take care.

PCR Negative

2005-12-03T08:48:00.000Z

Wasn't going to write again quite so soon - I prefer to wait till sides are clear - but just had to mention this one.

On Thursday, I had to call my nurse to let her know I forgot my Riba in the morning (oops!). Also needed to talk about other matters which were troubling me.

Before I said anything, I was asked if I had PCR result (my usual nurse is on leave, this was her colleague) - and told it was negative. This is probably the best news I have received since being diagnosed 18 months ago.

I had mentally prepared myself for either outcome, and expected a rather unemotional response from myself - it's just the first hurdle after all. In fact, I was amazed to find emotions flooding over me, and a feeling of utter delight. It is starting to make the abuse I initially suffered from inept health professionals and the misery of side effects all seem worth while.

I'm so thankful that I changed hospitals. I can't speak highly enough of the staff I am working with now - the evidence of team work between nurses and the willingness to go above and beyond the call of duty to support has been a model which so many hospitals should learn from.

When I got the news I was at work, with a student waiting outside the office. She had to wait while I sent Vicki a text message, tho I don't think she minded!

Vicki was delighted - I have made much of the wonderful support she offers, but to see a weight lifting from her demonstrated how deeply that care runs.

We should have celebrated - but it was injection day. Instead we became strangely hyperactive and gave the house a thorough cleaning - under the seat cushions were hoovered, doors were washed down, walls were given a wipe over -all those occasional jobs which comprise a traditional spring clean!! We'll celebrate properly early next week - a nice meal out or something!!

Sadly, I made the error of thinking that my new found positivity and elation would offset the side effects. Wrong! Thursday evening was its usual 'dream state' before going to bed and falling asleep within minutes. Yesterday was unpleasant - not too bad in the morning - just under the weather, upset stomach and feeling the drugs in my system (do other people have this? - I think I can feel the drugs, and will know instantly if symptoms are not tx related). By early afternoon, I had a violent headache and was taking pain killers simply for respite and some sleep. I slept for a couple of hours, before waking and starting with an even worse headache. I spent the evening until bed time in and out of sleep and remember little about it. I remember a lot of coughing and pain and a very sore mouth!

Vicki did a fantastic job. All Xmas cards written and presents wrapped - so wonderful t ofeel organised. I would have liked to help, but didn't feel up to it - nor did I feel up to asking her to stop till I felt better. Never mind.

Better go - my nose just started bleeding!!

Take care all.

Nick

Wanting routine

2005-11-28T11:11:00.000Z

If there's one thing I would appreciate, it would be some predictability and routine to the side effects. I sometimes feel I'm getting everything, but when I look carefully, some recede and others bite me in the backside.

Last week was tiring. I worked well above my usual working hours - visiting schools, lecturing and marking - and spent most of my time sleeping apart from that. I've felt really guilty about the lack of time I've devoted to Vicki and home in general. Even Sunday, I was marking work for over 12 hours in total (in fact, I mark slowly because I can't concentrate and get headaches from reading, and need a break after each script as I tend to get distracted and wander).

This week's sides have been different again. I have got used to feeling tired and coughing almost constantly, but there are changes. I noticed my driving was not so good - not dangerous, but less alert and slower reactions. I also noticed that I am slurring more and tend to repeat myself or miss/forget what I'm saying. On Monday, while waffling pointlessly, I commented that I knew I had something vital to say and was keeping going until I could remember.

About and hour after my jab, I was feeling ill this week. I know an hour's very soon, but that's how it is. I fell asleep, and was out for the night. On Friday, I felt awful. I didn't move from the sofa, and could barely be bothered to get up to go to the toilet. Saturday was better. As a surprise, I took Vicki to a football match (she's a big fan of Kidderminster Harriers - no comment!!). It was cold. Bloody cold. It took me hours to thaw afterwards, despite a hot meal and a bath. I was shivering until we went to bed and feeling grotty again. At least it was a break.

Yetserday, I started itching. I have psoriasis type itchy spots on my thighs, calves, upper arms, back and stomach. Standard treatments do nothing, and it's so frustrating. No wonder people get depressed - the whole unworldly process is so debilitating.

Anyway - on a more positive note, my mouth infection seems less painful, and the pain in my side has eased (tho it's back over the last couple of days). I am also edging towards the hyperactive following the unpleasant immediate sides. I commented to Vicki that I feel ill - almost as if I'm watching myself from a distance, but am aware that my behaviour is lively and I'm doing more than I have for a while. It doesn't feel easy or natural, however, and I need to seek balance. I know each time I move, my legs are tired and heavy, my thought processes are forced. I don't like it - it's like a form of hyperactivity which could run out of control or result in collapse at some point.

At least the dizziness has stopped and I can walk upstairs comfortably and safely (although I have wobbles when standing up quickly).

If only it would be predictable - so much easier to plan life. It's not going to be tho - so may as well get used to it.

Anyway - that sounds rather 'down' - but in fact, I'm still positive. I take the view that I don't want this virus and I will beat it - regardless of the short term costs.

Next blog should be interesting (about time, you're thinking) - the Education Pack I have been developing will be presented for the first time in a school next Monday. Rather nerve-racking. I hope it's good and effective - I think it is, but maybe my judgment isn't what it should be. Also, it's 3 years since I taught a class of 11 year olds - I hope it's like a bicycle - once learned never forgotten. Enough insecurity - it'll be fine!!

Hope everyone's feeling good and best wishes to all.

What an odd week

2005-11-17T09:36:00.000Z

It's been very strange since I last posted. Nothing seems to have been quite as normal, and I actually feel quite proud of myself - doing it all has been a triumph of mind over matter.

Last week Vicki and I managed to get to the Birmingham FaCeIt event for a couple of hours. As ever, it was lovely to meet Michele again and encounter some more Hep C sufferers. It also gave me the chance to discuss the education project with representatives of the FaCeIt organisers. Clearly, I know that they have agendas and anything new can be very disruptive - I also know that they are answerable to the Department of Health. I felt our discussion was valuable and they are going to share the information at their next team meeting and hopefully pass it on to those in a position to share it with the DoH officials. Support from this quarter would be useful, but there is a concern that the messages may be amended to reflect the desired views. I have already clarified that the integrity of the project is not to be compromised, but some discussion could produce a very pleasing outcome, especially in terms of funding and publicity.

It's also been an odd week socially. Our social life has often consisted of Monday night's quiz (equal first again this week - third after the tie break) and perhaps an hour or so with family. This week was different. Along time before starting tx, I had booked concert tickets. Although I've often regretted committing myself, I would recommend it as a way of ensuring social life. I'm more likely to go and use tickets (hell - I'm too tight fisted to waste them) than to spontaneously go to the pub, and despite being under the weather, I had two very enjoyable evenings.

Firstly, we went to see Jasper Carrot's show - not performers I would normally have seen, but Vicki was keen to celebrate her brummy roots, and a lot of skilled and experienced performers provided a wonderful evening of nostalgia. I heard music which my older brother used to have on records (The Move, Bootleg Beatles, Bonnie Tyler), comedians who I have always admired (Bill Bailey, Lenny Henry) and dance which reminded me of myself having a dizzy spell on the stairs, but without the inevitable crash at the end (Lord of the Dance). I also promised Vicki that I would never admit that we saw Bobby Davro and G4 - but in fact, they were entertaining and very good at what they do. However, there can be few greater recipes for Riba-rage than G4 singing their new Xmas single - When a Child is Born. Could have been worse though - maybe it could have been Mistletoe and Whine (is that spelt correctly?) or the Millenium Prayer (sorry Cliff Richard fans). A wonderfully nostalgic evening which proved there's nothing quite like old pros to get you going. Annoyingly, about half way through, I started to cough, then get severe pains and feel generally unwell. It didn't spoil the evening, but I could have done without it.

And so to the second concert - another old pro - but slightly different. We went to see Alice Cooper - a performer I've never seen, but always wanted to. To see a performer wielding a sword, apparently cutting someone's throat, being strait jacketed and guillotined before coming back to life was the kind of magnificent rock excess which is such fun to watch (ok - I'm sick ..). It's a shame other performers don't try this - but I'm back to Cliff again now ... Another great evening of classic songs - I'd forgotten he was making albums in the late 60s. I feel so old ...

Work's been interesting. I've been busy all week, a few lectures, tutorials and sorting out appraisal visits etc. Thankfully, I've kept my head above water - though I know I haven't been 100% well.

In terms of sides, I'm still not particularly good. Day after tx is spent sleeping, next couple of days feeling just plain shattered and rather wobbly on my legs. A couple of newish things have started. I began with some digestive problems, which was unpleasant for a few days, then, on Tuesday evening I started with an intense pain in the right hand side of my stomach, starting in the usual 'liver area', and extending down into the groin. Had it been injection day, I would have sworn someone had given me concrete rather than interferon. I couldn't get comfortable, I couldn't sleep, poor Vicki must have been as sick of me grabbing her and whimpering as she is of my irritating cough. I recognised the pain - it's the one which has landed me in hospital half a dozen times in the last 20 years. The difference this time is that I have a diagnosis! To be honest, it scared me. Had it continued till the next day, I would have been talking to my nurse. I thought there was a serious problem.

I decided that sleep was my best option however, so I took one of my sleeping tablets for the first time since April. This was at about 3.30am. I went straight to sleep, and got up and went to work in the morning.

I think my colleagues knew I wasn't well - maybe the first time I've really looked as bad as I feel. I just got through the day. My lecturing wasn't great - I wince a little as I think what I forgot (though the main points were certainly covered), but I got through the day. In many ways, I was better than on Tuesday, when I did tutorials all day. In the morning, I was fine - in the afternoon, I was aware that I could not find the right words, that I was repeating myself and losing track of sentences. Not great.

The other thing is a marked increase in itchiness and skin irritation - the odd isolated spots have now become significant outcrops around my ears, on my legs and arms. They are also more itchy. E45 Emollient bath is helping at the moment, but I may decide to look at something more effective (Carol - if you're reading this, I may be in touch soon).

As well as these new bits, sides have continued. I still cough, alien is still seeking an escape from my liver and I still fall asleep at the drop of a hat (Vicki is so tolerant - she will sit and watch a film twice because I fell asleep first time round!).

Enough! It's been a busy week, I'm proud to have coped with it - but I need to rest before burn out. Next week, it's feet up and relax!

Hope everyone's feeling as well as can be - take care

Another busy week

2005-11-07T16:56:00.000Z

Last week seemed to tick over quite well - helped by there being very few students at work, so I have been able to catch up with some of my paperwork.

I had a meeting with Occupational Health this week. It went reasonably well. I explained that I was feeling rather burned out, but put this down to the fact that work is very busy up to this time of year (all the students are around for lectures at the start of the year, then gradually go out on teaching practices, which leads to a different type of work, which is more flexible). Although my lecture load is confined to the Monday - Thursday lunchtime hours which I am officially working, I have a full time load of marking and monitoring of students in school. This causes a few problems regarding my hours. I'm happy with this, but will be reducing these pro rata, depending on how HR work out my salary. Frankly, I expected this to work from a simple set of procedures, but this doesn't seem to be the case. It's rather frustrating - not just for me, but because my managers are also having problems getting clear guidelines.

I also asked about parking. Unlike most institutions, there is often insufficient parking if one arrives after 8.45, and when there is, it's a good way from the main buildings (it's claimed this is an environmental initiative to encourage use of public transport - I suspect no-one really believes this!!). I find this difficult as I have to carry quite a lot of items (laptop, books, plans, folders, marking etc), and am finding myself getting increasingly tired as tx progresses. It appears there is little willingness to help, therefore I shall have to cut corners or compromise some aspects of what I am able to do. It's very unsatisfactory.

Anyway - good moan ... moan over.

My injection on Thursday was odd. I felt off colour before I did it - I'd had a headache and felt very washed out for most of the week. About an hour after, I started to feel very off colour, and spent most of the evening sleeping intermittently. Friday was the same. I felt extremely off colour for most of Saturday, but was basically resting so that could go to a fireworks display on Saturday. We enjoyed a very pleasant couple of hours - it's the first time I've been to a display for many years, and despite standing directly in the line of the bonfire smoke and almost choking, it was relaxing and a good chance to get some fresh air.

I have tended to find my coughing fits getting worse after my injection. For several days, I find myself doubled up coughing (worst on Friday, gradually reducing until Monday, when I'm almost back to normal). After this, I get very intense pains in the 'liver region', which only last briefly, but offer an insight into a particularly unpleasant scene from 'Alien'. I find this very debilitating and extremely wearing, and rarely get through a full day without at least 2 naps of an hour or more, which still leave me very washed out.

On a positive note, I have completed the educational presentation which I've been working on, and have sent it to the voluntary agencies involved for evaluation. My teaching experience tells me that it should work very well and raise awareness significantly among young people, My experience also tells me that one can never be sure until a lesson's been delivered a few times. Oddly, producing the pack was not too time consuming - as most teachers know, when you have the information needed and a good knowledge of learning strategies, planning for yourself is not too tricky. What will be tricky is reworking it for others to deliver, should the project move ahead in the future after the pilot.

Again, I would ask that if anyone knows of any schools who would be willing to participate in the pilot (just one afternoon or morning), please let me know. I am happy to travel for up to an hour from Nottingham.

Anyway, quiz night tonight - we won last week, so defending our title, which is rather nice. On the whole, not a bad week, although I still feel shattered most of the time.

Got my 12 week test on Thursday, so a little edgy, though less so than I will be going for results next week.

Hope everyone's feeling good. Take care.

Back again

2005-10-30T17:35:00.000Z

After last week's rather brief post, I think a little more is needed today - so ... deep breath.

I had planned to call my last post 'Star Warts - Revenge of the Zit', but things have moved on since then. This was because of a regrettable incident involving a wart on my finger. Having tolerated it for a while, I started to feel that there was a good chance of catching it an breaking the skin. I bought some Wartner which freezes the wart until it comes away. Sadly, I think I left the freezing solution on a little too long, and a blister about 1cm diameter formed. About half an hour later, I caught this very tender blister and it broke the skin underneath. It filled with blood, and Vicki told me I needed to keep it covered. I wanted to because it was sensitive. She said it was just horrible to look at. Anyway, it's now dried through and can be seen in public - better still, the wart's gone. Thankfully, that's one more painful and irritating episode almost over. The down side is that it is on my middle finger, and there was a distinct pleasure in showing that to some people.

I didn't go to work last Monday. I started to develop pains in the left hand side of my face and jaw, running into my neck, which tended to pull that side of my face down. I would have worried about this, had I not read about it many months ago on Ron's blog. I took paracetamol continually but with no real improvement until Monday night. I was also incredibly tired.

I think I had 'hit the wall' in terms of treatment, and have noticed from several accounts that this tends to happen after a few weeks (6 - 9 was mentioned by my nurse). So, I was ready for a few days away - as was Vicki!

We went to my Dad's cottage in the Forest of Dean and had a very relaxing time. On the first evening, we watched deer in the back garden, feeding off apples. The next morning we saw a woodpecker at the nuts, and in between we had a refreshing night's sleep. We visited various tourist places - Heritage Centre, Birds of Prey Centre and Victorian Museum during the days, enjoying the gentle exercise and tiring ourselves out with the country air. We ate out a couple of times - 3 steaks in a week - and enjoyed Vicki's celebrated lasagne and my less celebrated Chicken Chasseur. It's actually very good, but has regrettable after effects which Vicki certainly doesn't celebrate, but which, being male, I tend to suffer with ill-disguised pride.

Over the week, the side effects persisted, and I was taking regular pain killers, but I began to get back to normal by Wednesday/Thursday, just in time for my next jab. This was a relief - just a couple of days of normality - but indicated that the few days away had had the intended impact.

Thursday and Friday were their normal selves - cancelled days in the scheme of things - and on Saturday we drove back home for the annual cricket club dinner. I didn't feel well - driving needed a lot of concentration, and being sociable seems very tiring - but we had a pleasant, if very wearing time.

Anyway - batteries recharged and I now plan to spend the next few days working on the Hep C education pack, which will hopefully be submitted to the various Trusts involved by the end of the week for their comments and evaluation. Vicki will be supporting me with this, acting asa sounding board and evaluating the first drafts. It'll be good to have someone to comment, and to ensure that the perspective of partners is represented.

I plan to run a series of evaluation presentations up to about May next year. If any of you know any schools/youth groups who may benefit from, and be willing to participate in this evaluation, please e-mail me. I'd be delighted to share thoughts with anyone who might be willing to help out - the more minds the better - even if they are brain fogged!!

So - that's everything caught up with. I still look well, which is annoying and feel lousy - which is more annoying, but I feel more human again - long may it last!

Back soon

2005-10-24T12:35:00.000+01:00

Just a very brief post as I'm going away for a few days, returning next Saturday.

I had planned to post earlier, but haven't really felt up to it. Very tired, bad headaches, hint of Bell's Palsy and a nose bleed lasting for a couple of days. Vicki says I've been overdoing it, and I have to agree. I think the few days away has come none too soon.

Anyway, I'll catch up when we get back.

In the meantime, take care!

Burn out

2005-10-17T16:59:00.000+01:00

The last week has been very tiring, and I suspect I'm heading towards the 6 - 9 week burn out which some seem to experience.

For me, this isn't too bad, although I feel extremely tired and wobbly on my feet. My work tends to operate on the same dates as schools, so I should get some 'down time' every couple of months when I can book a holiday and just rest for a few days. I have planned this for next week, and we can't wait for the break.

Over the last week, I started to review my work and consider how difficult it is at present. I can see that tx would be a lot easier without work - not that I couldn't work, but it would be good when feeling tired or under the weather not to have to get up and perform at the levels of challenge and rigour which I hope to provide. It would also mean that I would not get home tired and fall asleep for half the evening, making the worst social failure imaginable. On the other hand, I think without work I would just want to sit and do nothing, which couldn't be good for me or Vicki. On the whole, I think work is beneficial, but certainly challenging.

On additional problem I'm finding is that with the tiredness and shortness of breath (not to mention loss of co-ordination), the simple matter of climbing stairs, carrying the resources I need and general mobility have become a problem. I plan to look into registering as disabled in order to combat this.

On Thursday, I saw my nurse and was pleased with the general outcomes. My platelets are steady at 70 (low, but ok), ALT at 44, best for years, and no other significant issues. I decided to discuss my full range of side effects, prefacing the discussion with the comment that I had been reluctant to say too much previously, as experience at my previous hospital was that over-honesty resulted in treatment stopping. I felt then, and feel now, that this was simply a lack of commitment by the consultant to treat. My nurse listened to my comments and seemed unsurprised - as I believed from reading comments by others, my sides are far from rare. It seems so regrettable that some suffer because of professional ignorance. One wonders when some medics say that rule 1 is 'do no harm' if that includes harm caused by neglect or indifference to maintaining their own practice at an up to date level.

This week was also tough as Vicki was unwell - it shows just how much she actually does to support me. I tend to be very unaware of what's going on for a few days after tx, and take things for granted (rather like groping through a foggy haze). This week I noticed far more than before.

On Friday, we went out to a surprise 'party' (a drink in the pub) for a friend from cricket who has just turned 60. After about half an hour I felt shattered by the need to interact and enjoy the general 'bonhomie'. Vicki commented that my speech was slurring after a while, and I couldn't get home soon enough. This week I have my brother's 50th birthday on Saturday - I feel distinctly apprehensive as I can't escape quite as easily. On the other hand, Saturday allows an extra day to recover. Hopefully, I can enjoy it a little more.

I've also now realised that I tend to repeat myself and waffle on if I'm not careful, so now be a good time to finish. Currently, I am looking in amazement at how much water I'm drinking and worrying about the liver-region pain which seems to be getting rather worse of late. However, all being good on my bloods, I'm going to put this down as one more irritant to live with.

Hope everyone is doing well, and apologies - this has felt really waffly, but concentration seems very difficult at the moment.

Lingering sides

2005-10-10T12:06:00.000+01:00

Although my immediate sides seem now to be settling somewhat (still very nasty, and leaving me flat out for a couple days), there seem to be lingering effects which I haven't really been attentive to.

This week, I began to get vicious pains in my left ankle - not a typical joint pain, but a really sharp stabbing which pulled me up short each time it occurred. Another new one was my loss of appetite. Even Vicki's lasagne lacked its usual appeal (though I made up for it the following day - the miracle of microwaves ...)

Pain is something I have not really paid much attention to, but I am getting increasing tenderness and general pain in the liver area. Also, the skin on my stomach seems to be getting quite 'bobbly' - although nothing much by way of itching.

Most frustrating of all is the limited co-ordination, allied to fatigue. I seem ok when sitting, but standing leaves me light headed and with a tendency to lean to the left. In fact, my left side seems generally uncomfortable - discomfort in my face, neck, shoulder, knee, hip and ankle - it almost feels as if every tendon is swollen or stretched. I wonder if this sort of lateral effect is in anyway typical?

Added to this is shortage of breath. I'm not used to puffing and blowing when I climb a flight of stairs. Now such activity means a five minute sit down, drink of water and lengthy 'abstracted' periods afterwards.

Last night I had a really poor night's sleep. This is probably because I didn't take my piriton before bedtime. It could also be because I spend so much time sleeping on Saturday and Sunday. The main reason I don't sleep, however, is a 'twitching' in my legs and arms. It's as if something is sending tiny impulses to my nerve endings, giving me the urge to tense and untense muscles and wiggle my fingers and toes. Not that this helps.

I actually think I need to mention some of these things to my nurse on Thursday. I've tended to say I feel a bit rough - 'flu-like symptoms' etc, but wonder if I need to be more specific. I suppose having an illness with so many 'non-symptoms', I'm very aware that minor issues can actually be quite significant to medical professionals. Putting it another way, I would hate to not mention something which could be a problem later. Or maybe I just fancy a good whinge.

The issue relating to counselling, about which my views are very clearly known (I hope) arose again last week, when Vicki and I sat in bed into the early hours of the morning discussing a range of problems and issues relating to Hep C - my concerns over treatment outcomes, worries at every test, guilt over the impact on Vicki (she is wonderful about everything, but it doesn't make me feel any better really), work, more work etc etc etc. We talked for a very long time (hours I suspect), and I also talked about my fear of stress from any source, and my concerns over how able I am to respond appropriately. If you like, how I cope with the unexpected or the uninformed demands of others.

I realise how unfair all this is on Vicki - she listens and supports constantly, but I feel very inadequate in offering support in return (though I do my best, and am usually alright except when sides are unpleasant). It highlights, once again this vital issue - we both need a wholly objective, but knowledgable outsider to talk with - together and separately. The nurses do a fantastic job, but their workload means that they can't drop everything to listen to a series of ifs, buts and niggles. Also, they are simply not trained as counsellors. In my profession I often have similar issues - students (and previously children) come for counselling - but I am not trained adequately to do it. Well intentioned but misguided counselling can be massively damaging - I've seen it in schools.

The whole episode was a bit frightening, in that it gave an insight into how these stresses can build, and develop into clinical depression - notwithstanding the sides from tx.

It is perhaps typically shortsighted of the NHS that no provision is made - people are allowed to deteriorate to a point where chemicals and aggressive treatments are the only option.

I remember a doctor telling me once that the first rule was 'do no harm' - from a very existential point of view, I wonder if failure to do anything amounts to causing harm through neglect?

Anyway - hope all are well

Take care

Away from the ranting ...

2005-10-03T16:58:00.000+01:00

Following my last rant, just a few bits about how I've been feeling since Thursday.

I felt very fluey and off colour through Friday and most of Saturday. However, the immediate impact seems to be somewhat lessened, although still leaving me feeling lousy.

Yesterday, I got up feeling quite well, but almost as soon as we got to ASDA, I wanted to leave and rest again. Obviously, I didn't, but on getting home, I put my feet up and slept for a while. I also felt generally groggy and not particularly well.

Today started badly, with a general light headedness which culminated in falling over in the bathroom. Thankfully I only pulled the towel rail off the wall, grabbed the toilet roll with my wet hand and landed on the toilet seat (thankfully down - being male I rarely put the seat down, but this time I had to stop the cats falling in). The only damage to me was a bruise on my back where I hit the cistern. Cats shot out of the room at 90mph with tails the size of toilet brushes and Vicki shot in at 90mph wondering what the hell I had done this time (actually, she was very concerned and didn't laugh at this wet, naked, towel-covered vision until she had checked I was ok).

Dizzy spells have become quite commonplace, but this is the first time I haven't been able to save myself. I find going up and down stairs quite hard work, and generally shuffle along one step at a time, clinging to the bannister. Vicki will often help (if she knows I am going), supporting me and generally helping to avert disaster.

Fortunately, the lack of co-ordination is generally gone by Tuesday (wow - 2 days when I can walk in a straight line!). The shortage of breath is not.

Work involves many flights of stairs, and as soon as I get to the office, I spend 10 minutes puffing and blowing. This is true of almost any physical exertion, and is probably related to the dreadful coughing fits which seem to improve over the week following tx.

I mention these, as they seem to be becoming standard features of my side effects, but ones which I keep forgetting to mention to my nurse. Adding these to my current dental/gum problems and generally sore mouth, I can't help feeling I am now getting into a typical cycle of acute and chronic sides - not surprising after 6 weeks of tx.

Anyway - a couple of bits of other news. My dad called yesterday to say how surprised he was to see me on Sky News while in Portugal, and another friend just called to say he had seen it too. I hadn't realised I was on Sky - but as the C5 reporter was from BSkyB, I suppose it's logical.

How disappointing that the on line item in Sky News was so poor, describing an illness 'typically associated with drug users'. Needless to say, the editor has received an e-mail from me.

Vicki also wrote to the Independent about their article, which claims Hep C can be transmitted via saliva. Heaven help me if some of those I work with believe that - schools would not have me near their pupils in case I sneeze and students would be very concerned. Hopefully, Vicki's e-mail will see the error corrected.

Anyway - enough for now - I've been working today and feel rather tired and ready to put my feet up.

Hope everyone is feeling ok.