Hi All,
Just to let you know that I'm home, after 2 nights on Smithers Ward at the Marsden. Had the biopsy on Monday afternoon. I was terrified - really nervous of how much it might hurt. The lovely Fiona from Bud Flanagan Outpatients (my usual department/ward) came with me to hold my hand. I had to lie on my front and they used ultrasound to guide the dirty great big needle in, after putting in lots of local anaesthetic. The nurse said that it looked really painful and I could feel quite a lot of blood trickling down my side as the procedure was done. The amazing thing was that I could hardly feel it! I'm a feeling a little bit battered and bruised now and rather tired (coming off 4 days on Dex) after a couple of nights in, but I'm ok really. It's always the stuff that you worry about that's ok and the stuff you don't worry about that bites you hard on the arse!
Seeing the transplant consultant on Thursday, but don't expect to get any results for a bit, tho. Will update again when I've got news.
Just glad to be home!
A xxx
Tuesday, 23 March 2010
Sunday, 21 March 2010
Quick update...
Hi all,
Going into the Marsden today to have the biopsy tomorrow - it seems I can get it done more quickly as an inpatient. Hope to be home Tues am (or even Mon eve, with a bit of luck and a following wind). Results will take 2-3 weeks. Can't have sedation, cos it seems I'll need to follow various instructions, such as holding my breath. Can't wait. The MM CNS has offered to come with me and let me break her fingers, tho. Bless! Will be turning the air blue, I'm sure.
The consultants seem to think that it'll be infection (doubt it - had no temperature and urine tests have been clear), a MM deposit (I expect this is the most likely) or sometimes one can get all sorts of weird lumps and bumps after an allo (sounds like straw-clutching to me).
I've been put on a combination of co-codamol and tramadol for pain relief (v. effective) and given thalidomide and a 4-day course of dex (no sleep til they're over with!). Depending on the results, they may want to do some radiotherapy. They've also changed my antibiotic for the C. Diff - seems to be drying up, but that could be the painkillers and thalidomide having that effect.
Will post again soon - gonna be in a different ward, so I don't know if I'll have internet access.
With love,
A xxx
Going into the Marsden today to have the biopsy tomorrow - it seems I can get it done more quickly as an inpatient. Hope to be home Tues am (or even Mon eve, with a bit of luck and a following wind). Results will take 2-3 weeks. Can't have sedation, cos it seems I'll need to follow various instructions, such as holding my breath. Can't wait. The MM CNS has offered to come with me and let me break her fingers, tho. Bless! Will be turning the air blue, I'm sure.
The consultants seem to think that it'll be infection (doubt it - had no temperature and urine tests have been clear), a MM deposit (I expect this is the most likely) or sometimes one can get all sorts of weird lumps and bumps after an allo (sounds like straw-clutching to me).
I've been put on a combination of co-codamol and tramadol for pain relief (v. effective) and given thalidomide and a 4-day course of dex (no sleep til they're over with!). Depending on the results, they may want to do some radiotherapy. They've also changed my antibiotic for the C. Diff - seems to be drying up, but that could be the painkillers and thalidomide having that effect.
Will post again soon - gonna be in a different ward, so I don't know if I'll have internet access.
With love,
A xxx
Thursday, 18 March 2010
...and there's more shit...
Hi All,
Still going a bit pear-shaped here, I'm afraid. Poorly tum is no better and the pain in my side got to epic proportions by Tuesday, so I made an appt at my GPs. She said she thought it was a urine/kidney infection and gave me some antibiotics and horse-tranquiliser painkillers. So far, so groovy. However, I went to the Marsden yesterday and the doc there wanted to do some more investigation, so I ended up having an ultrasound and a CT scan of my kidney. They've found a "mass", which could be infection, but, reading between the lines, I think is myeloma. Fuck, fuck, fuck. Gotta have a biopsy - they should call me today with an appt for that.
Can't quite believe this is happening...
Will update when there's more news.
A xxx
Still going a bit pear-shaped here, I'm afraid. Poorly tum is no better and the pain in my side got to epic proportions by Tuesday, so I made an appt at my GPs. She said she thought it was a urine/kidney infection and gave me some antibiotics and horse-tranquiliser painkillers. So far, so groovy. However, I went to the Marsden yesterday and the doc there wanted to do some more investigation, so I ended up having an ultrasound and a CT scan of my kidney. They've found a "mass", which could be infection, but, reading between the lines, I think is myeloma. Fuck, fuck, fuck. Gotta have a biopsy - they should call me today with an appt for that.
Can't quite believe this is happening...
Will update when there's more news.
A xxx
Monday, 15 March 2010
Still up Shit Creek - but not in the same way...
Hello everybody!
Soz it's taken so long for me to blog again, but there's been some furious bathroom action, chez Skelton - as you will see...
Saw Gareth Morgan (the Grand Fromage in MM, for those lucky enough not to be in the know!) last Thursday. The long and short of it is that the doc I saw the previous week, who scared seven shades of shite out of me, was, shall we say, jumping the gun somewhat. The prof said it's really too early to make any judgements and the next BMB in about 5 weeks (12 weeks post-transplant) will be a much better guide to what needs to be done next, re further treatments. That said, he might decide to put me on Thalidomide for the time being. I'm seeing him again in about 3 weeks, so we'll see...
What's been concerning me for over a week has been a raging stomach upset. I've felt terrible - even had to miss the O2 concert, which upset me hugely. I also had a clinic appt at the Marsden last Tues and I told the doc that I'd had the chronic trots and awful stomach cramps. She said they'd need a sample (nice!) and I assured her that I'd be able to rustle something up, no probs! The doc called me that evening to say I'd tested positive for C. Diff - the bug that finishes off all the old dears in hospital. I've been given a 10-day course of antibiotics, which I've been taking since last Weds and I can't say it's a whole lot better. Still crapping through the eye of a needle and still, at times, in more pain than I've ever felt before in my entire life. Well, except for childbirth! I've done a little bit of research and apparently it can be resistant to the drug I'm taking, so if it's no better by tomorrow, I'm gonna give the hospital a call to see what they say. I can cope with the pain in the daytime, but at night it's awful. Don't think I've slept for longer that 30mins in any given "burst" for over a week. It's not so much sleeping as passing out with exhaustion. The problem is that much of the pain is in my side, which spreads around to my back and chest, at times in a heart-attack-stylee which is deeply unpleasant and makes it near impossible to lie down. Am well pissed off with it now - would have cheerfully put a bullet through what passes for my brain last night. Luckily, I don't have a gun. I expect the hospital will just want me to finish the course of antibiotics, but I hope they can give me advice on pain relief, or let me know where I can lay my hands on that gun...
Anyhoo, I feel the over-used bathroom singing it's siren song, so best all round if I close now.
I'll post again as soon as there's anything worth telling.
Love,
Axxx
Soz it's taken so long for me to blog again, but there's been some furious bathroom action, chez Skelton - as you will see...
Saw Gareth Morgan (the Grand Fromage in MM, for those lucky enough not to be in the know!) last Thursday. The long and short of it is that the doc I saw the previous week, who scared seven shades of shite out of me, was, shall we say, jumping the gun somewhat. The prof said it's really too early to make any judgements and the next BMB in about 5 weeks (12 weeks post-transplant) will be a much better guide to what needs to be done next, re further treatments. That said, he might decide to put me on Thalidomide for the time being. I'm seeing him again in about 3 weeks, so we'll see...
What's been concerning me for over a week has been a raging stomach upset. I've felt terrible - even had to miss the O2 concert, which upset me hugely. I also had a clinic appt at the Marsden last Tues and I told the doc that I'd had the chronic trots and awful stomach cramps. She said they'd need a sample (nice!) and I assured her that I'd be able to rustle something up, no probs! The doc called me that evening to say I'd tested positive for C. Diff - the bug that finishes off all the old dears in hospital. I've been given a 10-day course of antibiotics, which I've been taking since last Weds and I can't say it's a whole lot better. Still crapping through the eye of a needle and still, at times, in more pain than I've ever felt before in my entire life. Well, except for childbirth! I've done a little bit of research and apparently it can be resistant to the drug I'm taking, so if it's no better by tomorrow, I'm gonna give the hospital a call to see what they say. I can cope with the pain in the daytime, but at night it's awful. Don't think I've slept for longer that 30mins in any given "burst" for over a week. It's not so much sleeping as passing out with exhaustion. The problem is that much of the pain is in my side, which spreads around to my back and chest, at times in a heart-attack-stylee which is deeply unpleasant and makes it near impossible to lie down. Am well pissed off with it now - would have cheerfully put a bullet through what passes for my brain last night. Luckily, I don't have a gun. I expect the hospital will just want me to finish the course of antibiotics, but I hope they can give me advice on pain relief, or let me know where I can lay my hands on that gun...
Anyhoo, I feel the over-used bathroom singing it's siren song, so best all round if I close now.
I'll post again as soon as there's anything worth telling.
Love,
Axxx
Tuesday, 2 March 2010
Heading for Shit Creek...and I can't find my paddle...
Hi All,
Went to the Marsden yesterday for my regular checkup. I feel ok, apart from some backache, but the news wasn't exactly great. It seems my marrow is 86% Pam's - this isn't terrible at this stage, but not as good as it could be, so they're taking me off the immuno-suppressants rather more quickly than originally planned. I'll be off one lot completely by the end of this week and the other has been reduced. The marrow was also showing more plasma cells than is strictly desirable, so I've got to go to Prof Morgan's clinic on Thursday next week to discuss maintenance/further treatment. What form this will take, God knows. Really pissed off - surely I'm due a fucking break?! At this rate, I'll be chugging back the Revlimid at The Last Chance Saloon before the summer comes. I just want to see Emily through her school years and the chance of that seems increasingly unlikely.
Fuck it all - I'll try not to think about it til I have to next week.
Will post again next week when I've got more news.
Love,
A xxx
Went to the Marsden yesterday for my regular checkup. I feel ok, apart from some backache, but the news wasn't exactly great. It seems my marrow is 86% Pam's - this isn't terrible at this stage, but not as good as it could be, so they're taking me off the immuno-suppressants rather more quickly than originally planned. I'll be off one lot completely by the end of this week and the other has been reduced. The marrow was also showing more plasma cells than is strictly desirable, so I've got to go to Prof Morgan's clinic on Thursday next week to discuss maintenance/further treatment. What form this will take, God knows. Really pissed off - surely I'm due a fucking break?! At this rate, I'll be chugging back the Revlimid at The Last Chance Saloon before the summer comes. I just want to see Emily through her school years and the chance of that seems increasingly unlikely.
Fuck it all - I'll try not to think about it til I have to next week.
Will post again next week when I've got more news.
Love,
A xxx
Wednesday, 24 February 2010
O2? Oh Yeah!...
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
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
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
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