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
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