Every blog has its day

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!

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!

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.