Hello All,
Well, it's about 5.20 in the morning and I've been all Timmy Mallett since about 4ish - that's Wide Awake, not being an utter twat in a loud shirt and stupid glasses - courtesy of the lovely Dex. On the good news side, the cankles seem to have subsided - hurrah! Got my only thin bits back!
Got a good day planned. Off for a massage first thing (fabby!) then going for a trip to the cinema with Em and my friend Jane and 2 of her girls. Seeing Harry Potter - I've already seen it, as I always get my fix of Harry action as soon as poss (on the first day this time round) with my fellow Potter fan Paula, plus Em likes me to see them first, in case they're a bit scary. I seem to be raising a big girl's blouse! Bless! Wonder if I'll ever see Mark's books on the big screen? They're crying out to be animated. What's that I hear you cry? It's about time I did some shameless plugging? Oh well, if you insist! Before he died, Mark had 4 childrens' books accepted for publication. The first one came out in Jan this year and was called "The Monkey Pirates" and the second ("It's Them Monkey Pirates Again") came out at the beginning of this month. They're available on Amazon and Play.com and in most half-decent bookshops. I know I'm biased but I think they're really funny. Esp suitable for 5-10 year-olds, but older and younger kids will enjoy them too (Em's Year 7 tutor group have really loved them) and they do read aloud very well. Everyone has said how much their kids have enjoyed them - mind you, I don't suppose anyone is likely to tell me that they think my dead husband's books are shit, are they? Anyone with young kids, nieces and nephews or just random passing children - get buying! Send this poor cancerous widow woman on some more holidays!
Enough with the plugging, already! Promise I won't do that again - just a reminder when the next one comes out (which is in November, I think)
Anyway, on the whole, I'm feeling pretty good. The shouder/arm pain is definitely settling down post-radiotherapy and I'm not feeling so utterly knackered on this round, so far anyway. The Dex is doing it's thing, but that's not all bad - gives me lots of energy, sort of a high, really. Thankfully, I don't seem to get the moody/aggressive thing that lots of peeps seem to get. I just get "buzzy" - my mind is a whirl, I can't shut the fuck up and mustn't be allowed out alone with a credit card! Oh, and the sleeplessness, of course. Mind you, I think you could count on the fingers of one hand the number of 5-hours plus nights of sleep I've had since Mark was diagnosed in Nov 07. Ho hum - think that might be my sleep-patterns up the Swannee for the rest of my days! When I'm getting the Dex action, tho, I have new-found sympathy for toddlers - it's like being a over-tired 3-year old on a sugar-rush who won't (or rather can't) give in to sleep! Maybe I should start watching In the Night Garden - I hear it's Mogadon for the under 5s.
Anyhoo - I'm sure you've all had enough of my 'roid-fulled bollocks for one post, so I'll be off now
Post soon, hopefully in a continuing cankleless state, but with more sleep.
Big snogs,
Amanda xxx
Tuesday, 28 July 2009
Saturday, 25 July 2009
Cankles - Lookin' Gooood!
Hiya All,
Had my radiotherapy on Weds - it's left me with a very achy breaky arm/shoulder, but it always makes it worse before it gets better, so hopefully it's just doing it's thing and won't be sore for too much longer. The post-radiotherapy tiredness hit me yesterday, but I rested up and feel better today. At my sis's at the mo - going to take it easy today as we're all off to a jazz night thingy (nice!) at the pub tonight and want to be on best form for that.
Did indulge in a little retail therapy after the hospital on Weds (not to mention a blow-out at Bill's - yum!) and got some lovely gladiatior sandals at Office - man, I LOVE that shop! Shouldn't be allowed to go in there, really. Better not go in when I'm on the 'roids - some people find the steroids make them moody and snappish, but I find they just make me rather garrulous (spelling?) and unable to control myself with a credit card! Naughty!
Have now got a rather lovely new side-effect - not sure what it's from, prob the 'roids - I have a fetching set of cankles. That's swollen ankles, for the uninitiated. Spent a chunk of yesterday with my feet up on a chair and they've come down quite a bit (I can get my new gladiatiors on, anyway!). Not best pleased - my ankles are the only thin bit I've got. Bummer! The only upside is that I get to gross Emily out - if you press into the swollen bits, the dent stays there. It looks really weird and she hates it - funny! Well, as I keep telling her, the only reason to have kids is to have fun winding them up. She's so lucky to have me!
Anyhoo, that's all for now - post again soon.
Buckets of slobber,
Amanda xxx
Had my radiotherapy on Weds - it's left me with a very achy breaky arm/shoulder, but it always makes it worse before it gets better, so hopefully it's just doing it's thing and won't be sore for too much longer. The post-radiotherapy tiredness hit me yesterday, but I rested up and feel better today. At my sis's at the mo - going to take it easy today as we're all off to a jazz night thingy (nice!) at the pub tonight and want to be on best form for that.
Did indulge in a little retail therapy after the hospital on Weds (not to mention a blow-out at Bill's - yum!) and got some lovely gladiatior sandals at Office - man, I LOVE that shop! Shouldn't be allowed to go in there, really. Better not go in when I'm on the 'roids - some people find the steroids make them moody and snappish, but I find they just make me rather garrulous (spelling?) and unable to control myself with a credit card! Naughty!
Have now got a rather lovely new side-effect - not sure what it's from, prob the 'roids - I have a fetching set of cankles. That's swollen ankles, for the uninitiated. Spent a chunk of yesterday with my feet up on a chair and they've come down quite a bit (I can get my new gladiatiors on, anyway!). Not best pleased - my ankles are the only thin bit I've got. Bummer! The only upside is that I get to gross Emily out - if you press into the swollen bits, the dent stays there. It looks really weird and she hates it - funny! Well, as I keep telling her, the only reason to have kids is to have fun winding them up. She's so lucky to have me!
Anyhoo, that's all for now - post again soon.
Buckets of slobber,
Amanda xxx
Wednesday, 22 July 2009
Butter me up. baby...
Hi All,
Well, I'm half way through my "off" week (no Velcade) and starting to feel vaguely human again. The tiredness is weird - not tiredness at all really, more like a spaced out feeling, like there's a thick pane of glass between me and the rest of the world. Not altogether unpleasant, but difficult if you need to concentrate or attempt anything more intellectually challenging than an episode of Coronation Street.
Been massaging my hands and feet with cocoa butter - have read that it helps with the old peripheral neuropathy, so going for a pre-emptive strike. If nothing else, I've got the softest hands and feet in the western world and they smell of chocolate. On the down side, the dog is even fonder of licking my toes.
Off to RSCH today for a session of radiotherapy. Shoulder's a bit sore, so hope this will sort it out. Acquired a new set of tattoo dots in the planning session last Friday and wouldn't be surprised if I end up with more yet. Maybe I'll get them all joined up - they might spell out something amusing. Or at least abusive.
Going for a spot of lunch after the zapping, with Toddy (big sis - lucky non-donor one!) and might have to squeeze in dose of retail therapy too. A fix at the Next sale on Sat just didn't do it for me - needing some full-price action, baby!
Will post soon, cancer-fans!
Amanda xxx
Well, I'm half way through my "off" week (no Velcade) and starting to feel vaguely human again. The tiredness is weird - not tiredness at all really, more like a spaced out feeling, like there's a thick pane of glass between me and the rest of the world. Not altogether unpleasant, but difficult if you need to concentrate or attempt anything more intellectually challenging than an episode of Coronation Street.
Been massaging my hands and feet with cocoa butter - have read that it helps with the old peripheral neuropathy, so going for a pre-emptive strike. If nothing else, I've got the softest hands and feet in the western world and they smell of chocolate. On the down side, the dog is even fonder of licking my toes.
Off to RSCH today for a session of radiotherapy. Shoulder's a bit sore, so hope this will sort it out. Acquired a new set of tattoo dots in the planning session last Friday and wouldn't be surprised if I end up with more yet. Maybe I'll get them all joined up - they might spell out something amusing. Or at least abusive.
Going for a spot of lunch after the zapping, with Toddy (big sis - lucky non-donor one!) and might have to squeeze in dose of retail therapy too. A fix at the Next sale on Sat just didn't do it for me - needing some full-price action, baby!
Will post soon, cancer-fans!
Amanda xxx
Tuesday, 14 July 2009
Ep 4 - Moochin' on down to the Marsden
Had appt at The Marsden (Sutton) 2day. Went off to get stabbed by the nurse-vampires, to be greeted with "Hi! You look great! Must be recovering well!" Er, no, actually! Well, at least I don't look like shit! Makes it harder to play the "Cancer Card", tho - you know, "Can't do that, I've got cancer", or "Don't do that, I've got cancer". Christ, gotta get some perks out of all this wank! The novelty of free prescriptions runs out pretty bloody quickly, I can tell you!
The upshot of the meeting was that, as yet, they are in agreement with RSCH - ie; Velcade, with a view to allo afterwards. They want to have a MDB (multi-disciplinary board) meeting in the next few weeks, to review all available MRIs, x-rays, etc and I'm back there for the outcome of that in 5 weeks. Will have had 2 full cycles of Velcade by then, so hopefully will have some idea how well or not that is working/being tolerated. Still not sure how I feel about the whole allogeneic thing, really. Just seems so fucking big and scary. Don't know if they usually do the mini option or if they'd want to go for the big fuck off one. Or even if there's any studies that I might be eligible/suitable for. Questions, questions... Think I'll just focus on the Velcade for now.
Will post again towards the end of the week
Licks and kisses,
Amanda xxx
The upshot of the meeting was that, as yet, they are in agreement with RSCH - ie; Velcade, with a view to allo afterwards. They want to have a MDB (multi-disciplinary board) meeting in the next few weeks, to review all available MRIs, x-rays, etc and I'm back there for the outcome of that in 5 weeks. Will have had 2 full cycles of Velcade by then, so hopefully will have some idea how well or not that is working/being tolerated. Still not sure how I feel about the whole allogeneic thing, really. Just seems so fucking big and scary. Don't know if they usually do the mini option or if they'd want to go for the big fuck off one. Or even if there's any studies that I might be eligible/suitable for. Questions, questions... Think I'll just focus on the Velcade for now.
Will post again towards the end of the week
Licks and kisses,
Amanda xxx
Monday, 13 July 2009
Episode 3 - and the Shite goes on...
Hello All,
Went to the HDU @ RSCH 2day. Just the 55 mins in the queue to park - AAAARRGH!!
Started to feel some side effects over the last few days. Began on Sat eve - started to feel really tired; sort of flu-like, achy and generally a bit bollocks. Bleedin' awful weather here in sunny (!) Sussex didn't help - drizzled all day: seemed as if November had landed in July. Still feeling bit shitty now. I suppose I've got to pace myself. Not something that comes naturally. Not that I'm the most dynamic of people, but having to think long and hard about whether to stagger across the room to get the remote or put up with Jeremy friggin Kyle doesn't sit easily with me. Perhaps some kind of holster is necessary...
Bit pissed off that I'm feeling side effects so soon into this treatment. Had done pretty well with the others, except towards the end. Maybe I'm due some more shit - not had enough lately! Maybe it's also that this is the 3rd lot of chemo in under a year. Fun (not).
Going to the Marsden 2moro. Will see if they've got anything to say about the allogeneic transplant idea that Brighton seem so keen on. Meeting my sis there (lucky donor match - have told her to be VERY careful! Those stem cells have got my name on them!), so will be lovely to see her, if nothing else. Will let you all know if anything worth telling comes up.
Til' next time, myeloma-fans!
Lotsa lurve,
Velcade Vera xxx
Went to the HDU @ RSCH 2day. Just the 55 mins in the queue to park - AAAARRGH!!
Started to feel some side effects over the last few days. Began on Sat eve - started to feel really tired; sort of flu-like, achy and generally a bit bollocks. Bleedin' awful weather here in sunny (!) Sussex didn't help - drizzled all day: seemed as if November had landed in July. Still feeling bit shitty now. I suppose I've got to pace myself. Not something that comes naturally. Not that I'm the most dynamic of people, but having to think long and hard about whether to stagger across the room to get the remote or put up with Jeremy friggin Kyle doesn't sit easily with me. Perhaps some kind of holster is necessary...
Bit pissed off that I'm feeling side effects so soon into this treatment. Had done pretty well with the others, except towards the end. Maybe I'm due some more shit - not had enough lately! Maybe it's also that this is the 3rd lot of chemo in under a year. Fun (not).
Going to the Marsden 2moro. Will see if they've got anything to say about the allogeneic transplant idea that Brighton seem so keen on. Meeting my sis there (lucky donor match - have told her to be VERY careful! Those stem cells have got my name on them!), so will be lovely to see her, if nothing else. Will let you all know if anything worth telling comes up.
Til' next time, myeloma-fans!
Lotsa lurve,
Velcade Vera xxx
Thursday, 9 July 2009
Went to the Haematology Day Unit (HDU) at The Royal Sussex County Hospital (RSCH) today for my second dose of Velcade. It means putting in a canula (always a laugh, with my hide-and-seek veins) and taking a blood sample. They use that to make up my Velcade prescription and in the meantime, I have fluids pumped in, to help keep my blood pressure up, as the Velcade apparantly can cause it to drop temporarily. Since I'm trying to drink 2-3 litres of water every day, these fluids really tip the balance and I spend an inordinate amount of time on the loo! Man, I really know how to enjoy myself! Mind you, it seems I'm getting my money's worth - the Velcade is about a grand a shot, which means about £16,000 to £24,000 for the Velcade alone for this round of treatment, not to mention the handfuls of other other drugs I'm taking, plus the nursing/clinical care - fuck me! Better bloody work at that price!
It really is just a lot of sitting around, so far anyway. The being stabbed with a canula isn't exactly fun, but I don't want a PICC line. I had a Hickman-type thingy for my SCT and although it was essential, it was still a pain in the arse. When you've got tubes dangling out of you 24/7, it means you're "medicalised" all the time. And lines need cleaning and flushing and generally fucking around with, not to mention being a risk of infection and not being able to have a bath (with a Hickman) or a shower (with a PICC). Bollocks to that.
Anyhoo (as Homer says), so far, so good. The travelling up and down to Brighton will get to be something of a bummer, I'm sure - only 15 miles, but with parking, can take over an hour - but it's just the way it is, so I'll have to put up with it.
Got a lovely day lined up tomorrow - no hospital, just seeing my aromatherapist for a lovely back massage (can't wait!), then visiting friends and walking the dog. Nice! Mental week next week, tho. Two visits to RSCH for Velcade, another for an MRI (luckily on a Velcade day), another for radiotherapy planning (but meeting a fellow MM chum for lunch first), an appointment at the Marsden in Sutton and a filling at the dentist. Bloody hell! Hope I get through it in one piece!
Post again soon, when there's anything interesting to say.
Chunks of love,
A xxx
It really is just a lot of sitting around, so far anyway. The being stabbed with a canula isn't exactly fun, but I don't want a PICC line. I had a Hickman-type thingy for my SCT and although it was essential, it was still a pain in the arse. When you've got tubes dangling out of you 24/7, it means you're "medicalised" all the time. And lines need cleaning and flushing and generally fucking around with, not to mention being a risk of infection and not being able to have a bath (with a Hickman) or a shower (with a PICC). Bollocks to that.
Anyhoo (as Homer says), so far, so good. The travelling up and down to Brighton will get to be something of a bummer, I'm sure - only 15 miles, but with parking, can take over an hour - but it's just the way it is, so I'll have to put up with it.
Got a lovely day lined up tomorrow - no hospital, just seeing my aromatherapist for a lovely back massage (can't wait!), then visiting friends and walking the dog. Nice! Mental week next week, tho. Two visits to RSCH for Velcade, another for an MRI (luckily on a Velcade day), another for radiotherapy planning (but meeting a fellow MM chum for lunch first), an appointment at the Marsden in Sutton and a filling at the dentist. Bloody hell! Hope I get through it in one piece!
Post again soon, when there's anything interesting to say.
Chunks of love,
A xxx
Wednesday, 8 July 2009
Well, here I am, in the Blogosphere at last! Better late than never, I suppose.
Just in case there's anyone reading this who doesn't know me, this blog is all about my experiences with Multiple Myeloma, a fun little cancer of the blood.
I was diagnosed in July 08, had 5 cycles of CTD (oral chemo) and a auto SCT (stem cell transplant with my own cells) in Feb 09. I hoped that this would give me a long period of remission - I think the average is in the region of 2-3 years and I've heard of quite a few still well after 10 years or more. But it was not to be - mine's lasted the grand total of about 2 months. So, I embarked this week on a course of Velcade (21 day cycle - will have 4-6 cycles), with a view to having an allo SCT (from a donor - one of my sisters is a match - lucky her!). Gulp!
Anyway, I'll try to keep this updated, so all you lucky people out there can keep up with my progress with this pile of poo disease. And hopefully, I can help any other sufferers out there too - I know that I'm always hungry for info about others' experiences
Will post again soon x
Just in case there's anyone reading this who doesn't know me, this blog is all about my experiences with Multiple Myeloma, a fun little cancer of the blood.
I was diagnosed in July 08, had 5 cycles of CTD (oral chemo) and a auto SCT (stem cell transplant with my own cells) in Feb 09. I hoped that this would give me a long period of remission - I think the average is in the region of 2-3 years and I've heard of quite a few still well after 10 years or more. But it was not to be - mine's lasted the grand total of about 2 months. So, I embarked this week on a course of Velcade (21 day cycle - will have 4-6 cycles), with a view to having an allo SCT (from a donor - one of my sisters is a match - lucky her!). Gulp!
Anyway, I'll try to keep this updated, so all you lucky people out there can keep up with my progress with this pile of poo disease. And hopefully, I can help any other sufferers out there too - I know that I'm always hungry for info about others' experiences
Will post again soon x
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