The Sword of Damocles...

Howdy All!
Been home for a little over a week now and still feeling fine. Still easily tired, but that's getting a bit better every day. I think it's more to do with two and-a-half weeks of sitting on my fat arse than anything else. The only other minor problem is an increase in the Velcade-related neuropathy in my feet and hands. Apparently, the immuno-suppressants I'm on can excacerbate the existing problem. Hopefully it'll get better with time. Had my first check up back at the Marsden on Monday and the doc was quite happy with how things are going. Blood counts still low, but slowly coming up.
I'm finding it hard to believe that this treatment has done any good - it's been such a piece of piss, so far anyway. I may be eating my words soon - if the GvHD kicks in in a big way, or I get some vile infection and wind up back in hospital. I do feel rather tense - like I'm waiting for the hammer to fall - for the GvHD to start, acquiring an infection or, worst of all, being told the whole thing was a collossal waste of time, 'cos it hasn't worked. Trying not to think about it most of the time!
Back at the Marsden on Monday for another check up and again on Thursday for the (un)lovely day 28 BMB. Can't wait for that one! Not sure how much it'll tell them this early on - will ask on Monday.
Oh, one cock-up to relate; on the drugs front, as per! The docs check the level of Ciclosporin in the blood at each clinic visit. When I went in to see the doc, the results weren't back yet, so she said she's ring me if there was a problem. Got a call at 5.25 that evening to be told my levels were high and could I change my dose from 100mg to 75. No problem, except that I'd been sent home with 100mg capsules only! Cue much frantic phoning to Brighton to see if they could help me out, resulting in a trip there on Tuesday with a queue for the car park of epic proportions. And I've gotta go back on Fri for some more, 'cos they couldn't rustle up enough at such short notice to see me through to Monday. Arse!
Anyhoo, I hope to post again next week.
Lotsa love and sloppy kisses,
Amanda xxx