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

Bye bye Velcade...!

Hi All,
Went to RSCH yesterday for 3rd dose of Velcade in cycle 5. Had felt really ropey all weekend - really bad cramps in my legs, kind of weepy and just utterly wiped out. Could have happily just pulled the duvet over my head and stayed in bed all day. Not good, to say the least. Managed to cadge a lift to the hospital (three cheers for Teddy-boy), so that really helped. I spoke (and cried a little bit!) to the lovely nurse who came to canulate me and she went off to speak to the doc. He said that he wanted me to have this dose, but he'd like to see me afterwards in the clinic.
The upshot is that he's taken me off the Velcade, but is leaving me on all the oral drugs, so still on the lovely Dex, in the hope that they'll work as a maintenance treatment to keep light chains/paraproteins down to an acceptable level until my donor kebab in the New Year. Keep 'em crossed! If levels do start to rise, then he'll move on to Revlimid. Really hope not, as I was hoping to keep that one up my sleeve for later on - don't know if it can be repeated, from a clinical or funding point of view. I'm not really a pessimist or an optimist, but I am a realist and with the speed of my relapse after the first transplant, I can't help thinking that I will relapse quickly after any treatment, even though there's not really any reason to believe this, since the treatments all work in different ways. Fuck it - worry about this one later! I'll just try to enjoy the fact that I'll be spending less time traipsing down to Brighton! I'll be seeing the doc again on the 19th, to review and in the meantime he's referred me for another MRI on my spine, just to be sure that the symptoms I've had aren't related to spinal damage (pretty sure that's not the case, but doesn't hurt to check - consultant has a quite a belt-and-braces approach and that's just fine by me)
Feeling better today, mainly due to a half-decent night's sleep - doc also prescribed me Amytriptyline (works on nerve pain), which has a sedative effect, so I think that helped.
Think that covers everything for now - will keep you posted on all developments, you lucky people!
Big hugs 'n' wet kisses,
A xxx

"I feel it in my fingers, I feel it in my toes..."

Hello All,
Day 1 of cycle 5 - I called RSCH last week to tell them that there'd been an increase in peripheral neuropathy (that's tingly hands and feet, to the uninitiated!), so they wanted a doctor to review me before getting my next dose of Velcade-action, due today. So I prepared myself for a long session of sitting on my arse, waiting for a doc to be free. But my luck was in and I was seen almost straight away. They decided to press on, but said they'd keep a close eye on it. I think you have to be really debilitated (unable to hold a pen or difficulty walking) before they reduce the dose. Bloody hope it doesn't get to that stage - what a fucking laugh-riot that'd be! "Soz, can't come to work, can't drive cos I can't tell if I'm holding the steering wheel or not." Let's keep our fingers crossed - actually, you can all keep them crossed for me; maybe I won't be able to uncross them! Anyway, had my £1,000-worth of the magic potion - my typing is shit, but I can't blame the drugs; it was always chronic! Oh, yeah, nearly forgot to say, I've also had nasty crampy pains in my legs and back - they didn't seem to give a flying fuck about that, really - just advised me to keep necking the painkillers.
Went to the Brighton Myeloma Group meeting on Saturday, along with Pammie. Can't say I learned a great deal, but it never hurts to hear some stuff again. With only a couple of exceptions (hello Kerry!), I'd say the average age was 60+, which is to be expected, I suppose. (Going to the big Infoday thingy in London, too, in acouple of weeks - sure that'll be like God's Waiting Room too, on more than 1 level! Good excuse for a night away in London, tho.) Towards the end, one of the registrars from RSCH Haematology gave a talk on Stem Cell Tranplants, in which he spoke quite a bit about donor tranplants, and used the magic phrase "chance of a cure". A few of the delagates got rather excited at this - I assume that they'd not been told much about it cos most of them were too old. Then one of the other docs there (one of the consultants - not mine) got up and started banging on about how they aren't really generally an option, what with the mortality rates and the paucity of research/studies and how (and I quote) "we really aren't very good at doing them". Cheers for that, Dr G Reaper. One of the sisters from Haematology was there -she was pulling "wish-he'd-shut-the-fuck-up"faces at me. It would have been interesting if my consultant had been there - to get his opinion on what was being said, but he'd already left.
Anyhoo - gotta wait and see if my hands and feet drop off or shrivel up or catch fire or something equally nasty over the next few days; wish me luck!
Will post again soon,
A xxx

A Lovely Week Off Beckons!...

Well, here we are, at the end of the "business" part of cycle 4 - just about to head in to my week off from hospital visits. Think I might be starting to get some side effects in my legs and feet, though - I ache from the knees down and my feet just don't feel right. Not numb or painful, exactly, but not right. I'll keep an eye on it and let the hospital know in advance of starting cycle 5.
It was the first anniversary of Mark's death last Saturday, which we thought warranted a day out in his memory. We went to the first Harvest at Jimmy's - a music and food festival at Jimmy's Farm, near Ipswich (you know, the geezer off the telly; Jamie Oliver's mate). It was a really good event - lots of good music, lots of good food and friggin' hot! East Anglia has been very good to me this summer! I think it was a great way to remember the anniversary - we wanted to do something that he would have enjoyed and he definitely would have enjoyed it. We didn't stay till the bitter end, so missed the headliners (Athlete), but we were all so shagged out, that we didn't care. Saw Badly Drawn Boy, anyway - he was the one I really wanted to see. And look out for Wallis Bird - an Irish singer, who was really good. She did the cover of "Just Can't Get Enough" that was used in the ad for The Sun earlier in the year (the one where the paper just keeps on unfolding and getting bigger - God forbid!). Far better than the shower of shite from The Saturdays. She's on YouTube - well worth a look/listen.
Obviously, it's been a rather emotional week, so soz if this post is a bit humourless, but tough shit - hope to be back to my usual stupid/abusive self soon.
With love and tingly toes,
Amanda xxx

Ding ding! Seconds out! Round 4!

Hello All!
So here I am, day 1 of my 4th cycle. Usual parking issues at RSCH today, along with the usual multiple stabbings before hitting the motherlode of a happy vein. Don't seem to be bruising too badly so far, tho. Mind you, still got bruises from 10 days ago. Saw the consultant today, too. Light chains are now within normal range - hurrah! Told him that I still hadn't made my final decision re allo, but I'm thinking that I might well go for it in the New Year. Based on that, he said that he'd probably want to do 6 cycles and then a reduced regime to take me through to the end of the year, just to be sure that I stay in remission up to the transplant. He wants to discuss this with the team at the Marsden first, tho. I'm about 75% sure I'll go through with it - still scary tho.
Had a fantastic week in Menorca with Em - It was our first time away on our own and it was great. The apartment was good - really clean and had air con, which was needed, cos it was incredibly hot - fabby! Lovely pool, with loads of sunloungers and umbrellas. Great to revisit Ciutadella - I love that little town; it's so beautiful. Would be fantastic to have a little bolt hole there - ah well, dream on!
Had an unbelievable journey home from Gatwick on Friday - took us 4 hours to get home, a journey of about 13 miles! Could have fucking walked it quicker! There was an accident just outside the North Terminal, effectively cutting it off. The powers that be didn't see fit to let anyone know, so I called my in-laws to come and pick us up, so they got caught up in the whole mess as well - took them over 4 hours to get back home, too. Em and I eventually got back by train - and what kind of fuckwit designed the station at Gatwick? Some of the platforms are only accessible from the station via a staircase - what a brilliant idea! In an airport station, where nearly all passengers have dirty great big suitcases. Fucking ace! There is a lift, but you have to go back into the scrum of the airport - beyond stupid. And you can imagine how busy the terminal building was, considering there was all the bodies from the North Terminal rammed in there too. I very nearly lost the plot, big time! Em heard some colourful language that day, I can tell you! Oh, and when we finally got to the platform, the bastard trains all stopped running - some track problem, or else they were just fucking with my head! Thankfully they started up again after about half an hour. Stressful end to a great holiday. Could have done without lugging a suitcase about, what with my dodgy shoulder and hip. Really knackered the next day!
Anyway, that's all the news that's for now, except to say that I'm still fat, but at least I'm brown, too! Even flab and "Tales of the Riverbank" cheeks look better with a tan!
Love, snogs and let's hope those light chains stay down!
Amanda xxx