Well this may be the last extended entry I make for a while. Still sleepless, - I'll plug away at this 'til the eyes start to droop. I was able to convince the specialists in here that the serious sounding viruses that the swabs had picked up weren't bothering me - a cough and a cold - no biggie. It is only three weeks since I was admitted although it seems longer, but I have to give credit to the great work done by the consultant and registrars who have looked after me. If I had a bit more sense I would have listened to Dr Victoria Potter sooner and checked myself in when she originally suggested.
As I stated at the end of yesterday's entry, I had some great news. Looks like the IV Ganciclovir has done the business on my Cyto Megalo Virus lurgie and dropped the counts from 110,000 when I was admitted (bad) to its current count of 6,000 which is good enough for me to be sent home. So tonight is my last night in Kings, very much looking forward to going home to our village to be with Jeannette and Milo again and hopefully be the kind of person they'll want to have around them rather the short fused miserable bugger that I was for much of the last year.
As always I don't want to jinx things by speaking too soon, but I'm hopeful now that with the onset of spring I can become more active and start to get some serious recovery and fitness going on. I've got most of the first stage out of the way in that I don't feel like shite all the time which should make me much more amenable to be around and I've started planning ahead for things I'd like to do this spring/summer which I was certainly in no mood or condition to do this time last year.
The plan for tomorrow then is brekkers, IV infusion and meds here then shoot over to Guys Hospital in a taxi to get the UV treatment done on my blood, hopefully finish there by 1500hrs then train home to family. Ridiculously excited to be going home and get settled again.
If things go to plan, I'll be outside living life again and will not be blogging anything like as often - the main reason I've kept it going thus far is because it's so damn boring being in hospital that it occupies the mind. But I will update as and when anything of interest to fellow AA/MDS sufferers occurs in case it helps you anticipate what to expect.
I've sort of stumbled into learning about this disease area in the same way that a toddler learns bump collision control ie by toodling along doing my own thing until I hit a wall, when things go wrong and knock me on my arse, I learn from it get up and carry on - and the thing I have learnt most recently is not to try and tough things out. I keep forgetting that everything has changed since my transplant and that I don't have an immune system - hence I cannot be blase about disease control measures.
Probably the only reason that I got away without being more ill last year is because we live in a very small community and I don't come into contact with anything like the number of people I used to when I worked in London and commuted on a daily basis. I will be attempting the next stage of my recovery with a little more caution than this time last year - starting with sensible eating. The chocolate and crisps thing has got to go!
Hopefully I've outlined some strategies for coping with spending extended periods of time in an isolated hospital room. As I believe I mentioned last year I found a laptop invaluable in helping me to pass the time - buy some net access from your Hospital network access provider. Whether for Facebook, blogging, streaming music or Skype it's your window on the outside world and helps you to feel engaged with what going on outside. This time in I also studiously avoided TV- didn't watch it once in three weeks which I found quite liberating actually. Filled it with a combination of Radio 4 and music. Skype is great as it allowed me to spend time with Jeannette without her having to spend 2 hours each way travelling to get here. Often we would just leave it open as we were getting on with something else as it's nice company just to have that other persons voice in the room. There will be times when you feel a little down and sorry for yourself - I think this only natural and my advice would be to let those feelings have their time and get them out if you feel like a bit of a cry have one, you'll always feel cleansed and refreshed afterwards. sleeping patterns seem to be problem for me - so whatever helps you - use it.
I found that I managed better this time without lots of visitors this will obviously be your own subjective decision.
At time of writing the blog is getting about 100 hits a day from variously the UK, USA, Europe, Australia, Canada, Latvia, Ukraine and Russia - if it hasn't informed I'd hope that it has at least entertained.
Thanks for reading and stay well.
Nick.
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