Hello Gang!
Not a huge amount to tell, really. Still feeling pretty much ok - had some backache, but the doc doesn't seem to be worried about it. Still get tired easily, but I recover from any fatigue quickly, so as long as I pace myself, I'm fine.
Went to the Marsden on Monday for my usual check-up. Doc was happy overall - I'm a bit anaemic, but not badly enough to need any treatment for it and my white cells are back within normal range, so it's just the 2 immuno-suppressant drugs that mean I'm still susceptible to infection. I'm being weaned off of one of these and should be off it completely in the next couple of weeks. They expect to be weaning me off the other after about another 8 weeks or so, depending on whether the GvHD rears it's ugly head or not. No signs of it yet! Oh, and they've agreed to take my line out next week! Hurrah! Deep, long, hot baths, here we come! No results from last week's bone marrow biopsy yet, but there should be some results back when I go for my next appt on Monday.
I asked the doc about whether it was a stupid risk to take Em to the O2 on the 7th March, from an infection point of view. She put on her serious face and said "Well, the really important issue here is....who are you going to see?!" When I told her it was Lily Allen and Dizzee Rascal, she said that, all things considered, I'd better go! Fabulous! Really looking forward to it and really didn't expect to be told that it's ok to go.
So, to sum up, it's all good, so far. Still plagued with the thoughts of "if it ain't hurting, it ain't working", but who the hell knows? Perhaps I'm just lucky - I think I'm due a break ot two (not bones, tho!) Should know more next week and I'll post again when I do.
Til then, Amanda-fans,
A xxx
Wednesday 24 February 2010
Thursday 11 February 2010
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
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
Tuesday 2 February 2010
Hold Me Close, Don't let Me Go, Oh No...
Just 3 things to say;
1) Don't seen to be losing my hair this time round - no one was able to confirm one way or the other whether I would or not. Still a slight chance it'll go south, but hopefully not. It's getting quite long now and is looking less SuBo. However, if I were to wear a Grandad collar shirt and a neckerchief, I'd be a dead ringer for David Essex, in his "Romany" phase
2) Still feeling fine, on the whole
And , finally....
3)...cue drum roll...
I'M GOING HOME!!!!!
Very excited! Have been warned that there's a good chance I'll wind up back here for some reason or other, but I don't care! I'll worry about that if and when it happens. Yay!!!!
Lotsa love,
A xxx
1) Don't seen to be losing my hair this time round - no one was able to confirm one way or the other whether I would or not. Still a slight chance it'll go south, but hopefully not. It's getting quite long now and is looking less SuBo. However, if I were to wear a Grandad collar shirt and a neckerchief, I'd be a dead ringer for David Essex, in his "Romany" phase
2) Still feeling fine, on the whole
And , finally....
3)...cue drum roll...
I'M GOING HOME!!!!!
Very excited! Have been warned that there's a good chance I'll wind up back here for some reason or other, but I don't care! I'll worry about that if and when it happens. Yay!!!!
Lotsa love,
A xxx
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