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

It's Chriiiistmaaaassss! (in the style of Mr N Holder)

Hello All!
Well, all is set for the Allo in the New Year. I'm due to go in on Friday 15th Jan, with the actual transplant to take place on the 20th. The two weeks before I go in are a mental round of appointments in Brighton and at the Marsden, for various tests and not forgetting, of course, the lovely Hickman line insertion. Mmmm...can't wait for that one! I just love having cables hanging out of my chest! It's a bit like having "Hey everyone! I've got cancer!" tattooed across your forehead. Oh well, gotta be done, I suppose. The upside of the utter bunfight of those two weeks is that they'll be such a collosal pain in the arse, that I'll be glad to get into hopsital for a bleedin' rest! At least I know a bit of what to expect this time - I know I'm not having the same treatment as last time, but I know more about ward routines, etc. Scant comfort - can you hear that strange sound? It's straws being clutched at!
I intend to blog regularly after Christmas, during the lead up to going in to hospital and also once I'm there, but (unless something really worth telling happens!) this will be my last post for 2009. I'm planning to spend Christmas in a haze of alcohol, seafood and lightly-cooked eggs (and all the other things that will be verboten, post-allo) - can't wait!
Wishing you all a fantastic Christmas and I'll be bothering you all again in the New Year.
With love and snogs under the mistletoe,
Amanda xxx

Dresses and stresses...

Wotcha, me muckers,
Another busy week - what am I like? Stupid, I hear you cry!
Went to my friend/sister-in-law Juliet's 40th birthday party last Friday. She held it at a lovely venue - Highley Manor. It's an old manor house that's been converted into a small hotel. Really fab place. Had a terrible time deciding what to wear tho! I'm crap at the whole getting "dressed up" thing. I'm rarely out of sweatshirt and jeans, so party dresses fill me with horror at the best of times - even worse when steroid-bloated with a mental patient's haircut. I'd bought 4 dresses by the morning of the party and said to myself, "Fuck it. I don't like any of them!" So I went shopping again! There's nothing like leaving it til the last minute! Concentrates the mind - found a great dress in about 10 minutes flat. And it was all of £18! I do love a bargain - hurrah for New Look! Anyhoo, the party went with a bang - Juliet was v nervous that no one would turn up! Silly moo - loads of bods and more or less all gussied-up to the nines. Everyone looked great and Em and I had a fab time. We'd decided to stay over - seemed like a good idea; better than fucking around with taxis and far better than not drinking! We had a lovely room, but unfortunately it was right over the disco, so even though we wimped out at about 11.45, we didn't get any sleep til the disco ended, at about 1.30. Bit wiped the next day, to say the least.

Went to see Eddie Izzard on Monday night with my friend Alison. Man, he is one funny dude! Lucky I'd had a caesarean (sp?) and kept my passages honeymoon-fresh, or I might have had an urgent need for some Tena Lady! Brilliant stuff. Rather less brilliant was every fucker and his wife wanting to leave the carpark at the same time! Still, it was worth it.

Em and I went to see "Nativity!" today - really silly and funny; if you like Christmas films, go see it. The kids in it are brilliant, really natural and one or two are hilarious.

Now for the serious bit. Had an e-mail from the Marsden, outlining the protocol for my transplant in January. Oh fuck! Makes it all seem a bit real now. Since getting it, I keep finding myself with a clenched jaw and my shoulders up around my ears - not that I'm consciously thinking about it constantly, it's like a background tension all the time. It'd better bloody tail off - I can't keep this up for the next 6 weeks. I'll have a sodding heart attack before I get the chance to go in for the transplant if I keep feeling like this! I think the only way to deal with it is to not deal with it, if you know what I mean. Spend a few weeks with my fingers in my ears, going "la la la not thinking about it la la la" very loudly indeed.

Think that's all for now.
Will post again soon with more crapola,
A xxx

Shows, Shops and Sacks of Shit...

Hiya All,
Well, been busy, busy, busy - probably doing too much, as per, but what the hell!
Em and I had a blinding weekend! She had an inset day on the Friday, so we went up to London for the weekend. Stayed at the Charing Cross Hotel - rather expensive, but worth every penny. Really couldn't get a better placed hotel - no more than 10 mins from anywhere you might want to go to.
We went to see Mamma Mia on the Friday afternoon - what a fantastic show! Hugely cheesey and all the better for it! If I thought I could have got tickets for that evening's show, I'd have very happily sat through it a second time. Fabulous! DEFINITELY will go to see it again sometime.
We hit Oxford Street on the Saturday morning - thought it was best to get there early, before it really kicked off. Proved to be a wise decision, cos it was heaving by the time we left, at about one-ish. Rather disappointed with New Look - no bleedin' kids clothes! I think the other shop in the street usually carries them, but it's undergoing a refurb - bugger! Went back to the hotel for a rest, then met my mate Tracy for a slap-up feed at Joe Allen's in Covent Garden - yum!
Decided to go over to Westfield on the Sunday morning, before going home, to see if the New Look there had what we were after. Thankfully, they did, cos I'd have been well pissed off if they hadn't, since the trip over there was fucking nightmareish! Weekend engineering works strike again! Arse!
Anyhoo, we got home about 4ish on Sunday pm, well shagged out, shopped out and showed out! A good time for one and all!
On the MM front, not much to tell, really. Still waiting for another consultant appointment at the Marsden, for further discussions and to do the consent forms. The work-up tests and line insertion won't take place until after Christmas, hopefully all in Brighton. My feet still hurt from the Velcade (particularly bad today, in fact), but I've just gotta put up with it, I suppose.
Got a 40th birthday party to go to on Friday (Happy BDay Juliet!). Had a nightmare deciding on an outfit, what with being a big ol' fat bloater cos of the steroids (and being a greedy fucking cow, to boot!). Tried a couple of spangly sequinned numbers - loved them both, but cos of the bloated stomach, as soon as I put tights underneath (and although my legs are still brownish from my hols, I am NOT going bare legged for love nor money!) I look like a sack of shit with a rope tied round the middle. Attractive! So have plumped (plump being the operative word!) for an a-line 60s-ish shortie dress, with leggings and kinky boots! Having said all that, it really doesn't matter, cos I'll probably sit in a quiet corner with my stupid Kevin Keegan hair and and just get steadily pissed! Sounds fun!
Anyway, I think that's all for now, cancer-buddies!
Big love,
A xxx

Morrissey, mucus and mini-transplants...

Hi All,
Had a fabby half term - didn't really do much, but sometimes that's the best way. Had my sis and niece to stay for most of the week - a lovely time was had by all. Went to see "Up"; really good film, def up to Pixar's usual standards. The short film that went with it was brill too - I sometimes enjoy those as much as the main film. Well worth seeing. And finally got to see Morrissey! My lovely friends Mary and Mike had bought me a ticket for my 40th - Mike and I were going to go together (Mary's tastes run more to the Phil Collins side of life - bless, I suppose someone's gotta like it). We were supposed to go in May, but it was cancelled cos he was ill, then it was on the news a couple of days before we were due to go that he'd collapsed on stage in Swindon (or somewhere equally grim). Bugger! But he resumed the tour on the night we were supposed to go, so went we did! And it was bloody brilliant! Did loads of old Smiths stuff, as well as new - don't mind admitting "How Soon Is Now" brought a tear to my eye! Top banana! Ended the half term with a raging cold, unfortunately, which has now turned into a minor chest infection -lovely! I felt like shit on Sunday/Monday - I'm slowly improving, but it's really knocked me for six. Hope to be back to work next week.

Went to the Marsden yesterday, for another meeting with Mark Ethell, the transplant guy. They're talking about an admission date of around 13th Jan. Gulp! They're proposing a mini transplant, with immuno-suppressive drugs and low-dose total body irradiation as a conditioning treatment - which means no chemo! That made my eyes light up, I can tell you! Obviously not looking forward to any of it, but don't really have much of an option.

I think that's all the news that's fit to print, so will close now - will post more when there's more to say.

Big love,
Axx

Where's my friggin' drugs!!!!

Hello, fucked-up bone marrow fans!
Another visit to RSCH yesterday, to see doc and have a dose of Zometa (a bone strengthener, for those of you not in the know). Didn't see usual consultant, just a registrar, but he's a nice fella - seen him before and he seems to be up to speed with everything. They're def leaving me on all the drugs, except Velcade and I'm back for review in 4 weeks. That means more Dex, which explains why I'm blogging at 4am, having just snarfed down a couple of choccy biccies and watched an unusually not-shit Jennifer "Queen of the Mediocre Rom Coms" Aniston film. I really should use my time more effectively - maybe I could write that novel, or learn Spanish or something...

Usual (and more than usual) fuck-ups with pharmacy and prescriptions. I had a feeling I would be left waiting for meds and I wasn't wrong. I got there about 1.35 for a 2.00 appointment and finally got my meds about 4.30. Boring! No point in getting all pissed off or angry, but I can't help thinking that there's lots of other things I could be doing with my (arguably limited!) time. Anyhoo, I stayed chilled - just one of those things! Got rather more fucked off when I checked them through later in the evening, tho, and found one of them missing. I let one of the nurses check them - should have known better! So I've got to sort that one out in the morning - fuck sake! If I'm not in the bastard hospital or queueing for the car park, I'm on the bleeding phone to them! Bollocks!

On the neuropathy front, I knocked the amytripteline on the head, cos I felt well spaced out the next day - fine if you want to spend the day watching shit telly and gazing out of the window, but not too good if you want to go to work or drive the car. The doc gave me a lower dose to try, but I think I'll wait til the weekend, just in case. The terrible cramps I had in my legs seem to have settled down quite a bit anyway. My hands are a bit achy, but nothing too bad. I can't play the piano, but those of you who know me know that's no change then! Ha ha! The old ones are the best ones! My feet are still quite troublesome and sore. They're worse at night - don't know if that's because you just notice it more then, or if it's because they actually feel better when I'm wearing shoes/socks. Might find my tightest socks and try wearing them in bed tomorrow night to see if that helps (sexy!) - I draw the line at shoes in bed!

Went on Saturday to the Myeloma UK Infoday in London on Saturday with Pam (my SCB) and met up with lots of the bods fron the Under50s website. Really good to meet lots of fellow unfortunate bastards. We had a few drinkies together and I really hope we can all (and more of us,too) meet up again, maybe just for the drinkies bit!

So, I think that's all there is to know for now. Will post again soon - half term next week (hurrah!) so hope all you out there with kids have a good one. It'll be time to start getting excited about Christmas after that!

Juicy love and sloppy snogs,
Amanda xxx