24/03/2014
Haemoglobin: TBA (range 120-150)
WBC: TBA (range 3.5 - 9.0)
Platelets: TBA (range 150 - 400)
Neutrophils: TBA (range 2 - 7.5)
Weight: 61kg
CMV count: 64,000 (test taken Tuesday 18/03/2014
Gritty eyed and wide awake on a Monday morning at 0350am waiting for daylight to start behind the blind. Hoping today to hear that my CMV levels are down to a manageable level and that my chances of getting out this week are enhanced. Speaking with a registrar just before he went off shift last night, he said it was not unlikely that I may be released to continue valganciclovir therapy via pills even if the CMV levels were not back to zero, nodded off there - 0430am coffee soon. Once it's daylight and I can start making preparations for the day things always start to pick up.
Some news from Russell Cook - he ran the Rome marathon yesterday in aid of AA and MDS/UK in 5ish hours so congratulations on a great achievement. I have also spent sometime catching up with a couple of people I was chatting to this time last year and who were interested in the blog as they were both approaching due time for BMT. One of who's (TB) has now taken place and the woman in question is going over a few bumps on the road just now (ain't we all) so this is my chance to pass on my best wishes and to say not to get downhearted - you need blinker vision for this kind of thing and then just the occasional look around to let you know what you're doing it for. I think I should have taken a few more looks around during the past year - I got a bit too dogged and blinkered.
Another was getting ready for BMT day this time last year and through reasons out of her control has had to delay things even further but is due possibly over the next couple of months.To this woman (SF) I say I hope the info on wards and personnel I gave proved helpful and that you get the support structure sorted such that you are able to take up the offer of the BMT soonest - because once quality of life starts to degrade it is most definitely time to jump ship and go for the new stuff.
My wife called me yesterday with the news that "we may be getting a horse!" A friend of a friend is off to Dubai and has dragged this poor bloody animal halfway across the world on her travels but is unable to take it to Dubai so is looking for a good home for him - for free! Jeannette was a very keen rider from a kid right up until her mid thirties and I know she misses it so watch this space. Milo loves horses and even I'm prepared to give it go once my arse grows back.
Must've dozed after this... time now 0555 hrs mouth quite painful first thing so time for Difflam mouthwash then we all know where I'm headed now! The shower - er- I mean coffee!
Later...
Ordered a new mobile phone yesterday as in my own unique style I managed to lock myself out of my crappy Blackberry PAYG account with EE, so I could receive calls and send txts but not dial out. Then I used up all the txts (teckstees as they say on Jeremy Kyle) - as in " 'er done sent 'im dirty teckstees oi seen 'em" and the whole thing seemed a bit stupid as I was paying at least a tenner a month on PAYG top up and was now locked out of the account so couldn't even do that. So found a basic entry level nokia smartphone for £11 a month with the Carphone Warehouse - I'm not being sponsored or anything. What a service those guys do - really strapped down tight, ordered it about 8pm last night and been getting emails tracking it from Birmingham to here during the course of the morning it's now at Southwark depot and it's due to be delivered later today. This being South London I reckon the last 300 metres of the journey will prove to the riskiest. Phone arrived at 1400 hrs - impressed.
Showered and slept feeling a bit more human now. Victoria Potter due on rounds this afternoon so hoping for news on CMV levels. Quiet week otherwise. Hello - spoke too soon, have to go down to haemotology outpatients at 1300hrs tomorrow for the dreaded Pentamidine inhaler. I thought I was finished with this stuff when I was put on Septrin tablets, turns out that they are basically the same drug in different formats but that the dosage of pentamidine is less toxic to bone marrow than Septrin. So for the best chance of recovery I have to go back to the old once a month inhaler.
Saw Victoria Potter today - unfortunately no CMV results today- due in tmw so I'll be here until at least Weds maybe out Thursday after photo-pheresis at Guys. Fingers crossed.
Had a little bit of a revelation earlier today, reading another blog site from a young guy called Josh who is currently undergoing chemo for Hodgkinson's Lymphoma. He was discussing his treatment and drugs regime and is being given prednisolone 75mg as a precursor to chemo and also as part of the ongoing process. He mentions the usual 'moonface' common to people taking steroids and then goes on talk about sudden inexplicable crying and emotional jags. Now this was all news to me, as I've been getting exactly the same thing which had made me think that I was starting to crack a bit. I'm usually pretty stoic and in control and it felt very strange to be welling up over the slightest thing, especially when skyping with my wife. So I couldn't wait to let her know that I hadn't suddenly become a big girlie and that I'm not falling off the end of anything.
Mind you at home we would often both end up a bit tear streaked at the end of watching movies together but I think that's allowed. Right that'll do for now - just been hooked up to another lovely bag of ganciclovir for an hour so goodnight.
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