Another quickie... (I should be so lucky!)

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

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

...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 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

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

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

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

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

I Fought the Bore and the Bore Won...

Hello again!
Forgot to say yesterday that I had my first experience of Pentamadine inhalation. Can't say that it relieved the dullness, but at least I got to stare at different set of walls for a bit. Fot the uninitiated, Pentamadine is an antibiotic. It's given via a nebuliser as an anti-pneumonia drug. Tastes a bit funny, but no problem. Not as foul as the itraconazole liquid I take twice a day - a heady cocktail of white wine vinegar and earwax - yum!
My biggest problem is ... what will I do when Celebrity Big Brother ends on Friday? With what will I fill my extensive leisure hours when there's no celebutard fuckwit antics to take delight in? I always enjoy CBB but I've been able to devote rather more time than usual to it, for this it's final swansong. Don't care for the non-celeb version, but love this one and this year's has been fab. I even like Alex Reid, whom I previously thought was a twat of the highest order. He's as thick as shit, but rather sweet with it. Shame Heidi Fleiss went out so early; her face is such a car wreck - it's endlessly entertaining. You find yourself wondering what bit will fall off first. Best CBB fizzog since Pete Burns and Jackie Stallone. In conclusion, either Dane or Alex to win! (Tho it'll probably be Vinnie)
Oh, and in answer to Pam B - no, I haven't stooped so low as to watch Jeremy Kyle! God forbid! Can't be doing with watching pond life being shouted at by a total and utter git!
On the health front - all much as yesterday. Still waiting for blood counts to come back up and still feeling fine. The doc says it's like deja vu every day when he comes in and asks how I am!
Will post again soon,
A xxx

Dull of Kintyre...

Hello!
Still here, still waiting, still bored!
So far (keeping all things crossed!), I can't believe how much easier than the auto this whole experience is! I feel absolutely fine, except for the lack of appetite - v. unusual for a gannet like me! - although that's got a lot to do with a) inactivity - not doing anything to build up an appetite, and b) the rather less than gourmet grub on offer, chez Marsden.
The doc has just been in - my blood counts are still falling, albeit slowly. They reckon that they might not bottom out, as they did with the auto, but just pootle around for a couple of days before recovering. When they do recover, I'll be able to go home, with the usual armfuls of drugs, I don't doubt.
Till then, it's just sitting about, waiting. Luckily, I don't have a problem with my own company (I think I'm rather lovely!) and I suppose I'm not bored, exactly - more a vague sense of ennui.
Anyhoo, will blog again soon - sorry it's so dull, but there's really fuck all to say! Just letting you all know I'm not dead yet.
Big love,
A xxx

...No, can't think of an interesting title...

Hello all,
Been a busy couple of days, well busy in a hospital kinda way! Had to move rooms after 2 days, but I didn't mind, cos this one is bigger and has a view (of sorts!). Continued with the Fludarabine, finishing on Monday. There's various other drugs, some oral, some IV, but I can't remember all the names and it's all too boring for words...
Tuesday was line insertion day - something I'd been dreading, since having one put in last year had been a rather less than pleasant experience. As it turned out, it was much less painful than the last one. Bit sore afterwards for a day or so, but on the whole a much less nasty experience. Still can't wait to get rid of it, tho! Who wants cables hanging out of their chest? My SCB came in to do her thing, too. She managed to get more than enough in one go - good girl! They'll have had a job filtering out the alcohol, tho!
Yesterday (Weds) was D-Day! Had 2 hours on the drip with Ciclosporin (immune suppressant), then off to Radiotherapy for the TBI. Much pushing and pulling into the right position, but ok really. Except for the music! They put on a CD and asked me if it was ok - I can't say I recognised either the song or the artist, but it seemed innocuous enough. Turned out to be a compilation, including all the artists (and I'm using that term VERY loosely!) I loathe! Bryan Adams, Dido and Norah Jones! Hellish!
Then it was back up to my room for 4 hours on the drip (hydration) then the cells, then another 4 hours hydration. The cells coming back were easier than the auto, since they're fresh, so no horrid smelly preservative or the weird "head rush" that goes with it.
So, they're in! No turning back now! The rest of my time here is waiting for engraftment, along with ingesting various drugs. So far, it's been easier than the Auto, but who knows what's on the cards!
Will post again in a few days.
A xxx

Is this the worst hotel in the world?...

Here I am, safely incarcerated in the Marsden Hotel!
Got here at about 2pm on Friday and, after much fucking around that seemed at times to be verging on simple piss-taking, I finally got my cell, sorry, room at about 8.45 that evening. Since that meant I missed Corrie, I think I've got grounds for legal recourse.
Anyhoo, so far, so good. Had my first dose of Fludarabine yesterday - just half an hour on the drip - and felt no ill effects. Gotta have another 3 doses, one-a-day for the next 3 days. Then it's the radiotherapy on Weds, followed by the cells from my SCB. Assuming she stumps up, of course! I've told her that I'll come out to where she's donating on Tuesday and squeeze her as hard as I can, just to help things along. The only other thing is the dreaded line insertion on Tuesday. Hated that last time, so really not looking forward to that one!
There's not really much more to tell - food's as crappy as ever and the staff are as lovely as last time, so no change from last year!
Will post again when there's more to tell.
Lotsa love,
A xxx

There's no business like snow business...

Oh for fuck's sake! This snow lark is getting beyond a joke! Already had to cancel my lung function test (they can manage without it, apparantly) and my line insertion appointments in Brighton (the line will go in at the Marsden when I go in) and now I've had to cancel today's appointment at the Marsden for a pre-transplant meeting and consent forms - another thing to do when I go in. Mind you, I don't think there's much, if anything that they haven't told me already, regarding all various horrible things that can happen. I'm still waiting to be told about the side-effect that means I'll lose 2 stone, have long, glossy STRAIGHT (!) hair and lose all my wrinkles. Think I might have a long wait for that one...

Anyhoo, weather permitting, I'll be going in on Friday afternoon. Deep breath, head down, here we go...

Doubt that I'll blog again till I'm safely incarcerated chez Marsden. So, until then, Myeloma fans,
I remain your most humble servant/blogger,
Amanda xxx

Snow Schmow!

Hi there!
Well, this week began with a fun-filled day at RSCH, having tests on my heart and kidneys - mainly meant lots of waiting around, with bloods being taken at various intervals. Could have been a v. dull experience, but I had my mate Alison with me and she did a marvellous job of keeping me amused! Tuesday was spent at the Marsden, mainly having the radiotherapy planning done. This is quite a bizzare experience. I spent an hour lying on a sort of beanbag thingy, semi-naked, while four total strangers poked and prodded me into position. They had impenetrable conversations largely consisting of what seemed like random numbers and drew all over me with marker pens. You can't help wondering at times if they're just taking the piss, esp. when they round it off by taking photos of you. There's probably a secret NHS website or newsletter crammed with pictures of patients looking like utter spanners. I could well be their new cover girl...

What about this weather, then, eh? What a fucking nightmare! Meant an interesting journey to RSCH on Thurs for a lovely (!) bone marrow biopsy. Big thanx to J and D for being insane enough to take me there! I was supposed to go again today for the line insertion, but didn't want to push my luck by attempting the journey again, so the Marsden will put it in when I'm admitted. They'd better give me sedation first, tho. Otherwise they'll have to fucking catch me first! Now just hoping the weather relents enough next week to make the journey to hospital and for family to get here safely to look after Em. Will worry about that next week! So, weather permitting and if I have "passed" all these tests, then it's all set for next Fri - just got to have a dental check-up next Tues and that's it. Blimey - all getting a bit close for comfort now! It'd be so great to be able to skip the next couple of months - anyone got a fully-functioning time machine?

No more news for now - I'll prob post again next week before I go in.

Smell ya later,
A xxx

Happy New Year!

Hello All,
Hope you all had a good Christmas/New Year - I did, though it proved to be rather busier than I expected. All good fun though, except for the raging cold that I've had and then given to everyone else! It's been Mucus City here, chez Skelton. Drying up now tho, thankfully.

Well, the "fun" all kicks off tomorrow, with the first of a slew of appointments, both at Brighton and the Marsden, to see if I'm fit enough for the transplant. Just been idly Googling "fludarabine+tbi" - fuck! Won't do that again in a hurry! There's some scary shit out there on the web. Sometimes, ignorance is bliss...

Well, off to Brighton tomorrow for a heart scan and some other tests. I think they mainly comprise of a great deal of sitting around on my fat arse waiting - one of those taking bloods at various intervals tests. At least my friend Alison is coming with me, so I'll have some company. Then it's off to the Marsden on Tuesday for radiotherapy consultation and planning and to have more bloods done and bloods done yet again on Weds, tho I'll get those ones done locally. The end of the week is the really fun time - bone marrow test on Thurs and line insertion on Fri. Really dreading the latter - bleeding painful last time! That one was done at the Marsden and I'm hoping Brighton will be a bit more heavy-handed with the sedation!

Don't mind admitting that I'm getting a bit scared now. Bit tired of putting on a brave face about it all too, but Em's so scared and worried about it all, that I don't have much choice, most of the time. I suppose I kind of don't want to let all my fears out - scared I won't be able to stuff them all back in! Which I need to if I don't want to bottle it and run for the hills, screaming "Fuck off! Not doing it! Aaargh!" Really must stop reading scary stuff on the internet. Oh well, don't really have a choice, do I? Since I seem to relapse really quickly after treatments, it's allograft or bust, isn't it? Hmm... Rocks and hard places spring to mind...

I'll try to post again later this week and fill you in on what, I think, will prove to be a really fun-packed week (not!)

With much love and donor stem cells,
A xxx