T + 391. He's gone a bit Roy Orbison.

17/03/2014

Haemoglobin: tba
WBC:
Platelets:
Neuts:

Weight: 60.1 kg

Ewwwww- the cannula  in my left forearm failed about 3am this morning I was being given a phosphate drip overnight - you can kind of sleep through it. But I blinked awake feeling rather moist it was like I'd been set up that  in that trick where someone puts your hand in a bowl of warm water when you are asleep and you pee yourself. After a couple of episodes this time last year where I had heavy bleeds in the night due to low platelets I wasn't particularly able to exclude any/or all bodily fluids being involved - so I got the light on double bloody quick and checked my bad self out. Phew - just loads of leaked phosphate salts and a little blood. Nurse Becky got me mopped up and changed the bed sheets - good as new. Got the cannula replaced to a more comfortable spot as well.

Normally when you are admitted for treatment on this ward you would be pre-fitted with a Hickman line which goes in the upper right chest and gives the team 3 ports to drip feed direct into the aorta (I think). Seeing as I'm not here long term I've got a cannula (one feed forearm or hand) which has to be moved to a new spot every 3rd day. As there's only one feed they have to keep it in use for about 12+ hours a day which isn't so great but y'know  - it's got to be done - and having a Hickman is quite a big thing to live with.

Had a visit from my Consultant Victoria Potter and a group of 3 registrars plus a nurse this afternoon so my tiny room was pretty much crammed with 5 females standing around the bed while I spoke with Victoria about how things have been going and she in turn updated me. Given my condition when admitted just under two weeks ago I am feeling a couple of thousand per cent better now - the only gripe is a small resurgence of mouth ulcers from where the mycophenylate was dropped.

But on a deeper level I must've been concerned about more than I was prepared to consciously acknowledge. I brought up two things first wtf  (not literally) with my platelets - lowest they've been since chemo and that's been with infusions topping up my existing levels and the other brain worm, the results of my bone marrow biopsy. Someone dropped a penny in my well last week that I didn't pick up on at first - but it was something along the lines of 'even if your chimerism is at 100%, it can sometimes drop back' ie there's a chance that some MDS ridden bone marrow may regrow. Now I think I just dismissed this out of hand at the time because it wasn't something I wanted to hear. But it never completely went away.

Anyway back to this afternoon, the low platelets is down to me receiving large doses of ganciclovir by IV. Turns out that if I did have gut GVHD, it's now gone and the culprit responsible for all my recent lavatorial slapstick is that little fucker the CMV virus. Fortunately my levels look to be dropping and I'm responding to the IV therapy which 'is nice'.

your blogger - seen earlier today

So the next bit was about the bone marrow biopsy and as Victoria started to talk I phased a bit found myself inexplicably getting very choked up and a bit bleary eyed. Not a clue where it came from but all I could think of for the next minute or so was keeping my face contorted as to not show any emotion and "Keep your shit together and stiff upper lip now chap - you can't blub in front of all the ladeez". What a turd.

The upshot of which is that my bone marrow still tests at 100% chimerism and if my CMV levels continue to drop I could be going home at the end of this week.

BOO (and I believe) YAH MOTHERFUNSTERS.