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