"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