Hiya Guys,
Another fun-packed trip to RSCH 2day for my regular session of stabbing and sitting around bored shitless. Actually, not too bad today, since I got my Velcade up pretty quickly and had a good long chat with a fellow poor bastard having the same treatment - always good to compare notes with someone.
Still pondering on the the whole donor transplant thingy, but have definitely decided not to go for it straight away. The Marsden have said that the earliest date they could offer for admission is 4th Nov, so I'd be unlikely to have more than 3 weeks or so between coming out and Christmas. Since it's only the second one since losing Mark, I think It'd be good for Em and I to be at home and to not have me doing the dying swan on the sofa. And there'll be lots of appts before going in and lots to organise and I really need a bit of a break. What's more, I haven't actually had it confirmed that I only need 4 cycles of Velcade and the 4th Nov is based on that being the case. So, all things considered, if I do go ahead, then it won't be before the New Year.
Still very unsure about whether to go ahead at all - on one hand, it's the only chance (emphasis on the word chance ) and on the other hand, there's the whole Graft versus Host Disease thing (which looks like it could potentially be a real barrel of laughs). Not to mention the 10-12% mortality rate in the first 3-4 months. Great. I'd love someone to to tell me what to do, but I know that can't happen.
Oh well - think I'll try to stop thinking about it til we're back from hols. Off on Fri, so will blog again when we're back.
Squidgy floppy love handles all round (esp. on me - got weighed 2day - thought weight loss was a perk of this cancer lark! Shows just how fucking wrong, and fat, you can be! )
Amanda xxx
Monday, 24 August 2009
Wednesday, 19 August 2009
Decisions, decisions!
Hiya All,
Well, we had a blinding week in Norfolk - fab time had by all. Definitely want to go back, maybe next summer.
More importantly, had my meeting with the Transplant Dude at the Marsden today - Pam (henceforth known as my Stem Cell Bitch) came with me. Didn't learn much that I didn't already know, but good to get some stuff I was unsure about confirmed. Did find out some new stuff, mainly about timing and what the Marsden team feel the next step should be. They are of the opinion that the allo is the way to go, but were at pains to point out that there are other options, such as Revlimid. As for the timing, from a purely medical point of view, then it's probably best to press on asap, but they did understand that I might feel the need for a bit of a break. What's more, even if we press straight on, and I only have 4 cycles of the Velcade, then I'm unlikely to be admitted before late Oct/early Nov, which could result in the possibility of only being out of hospital for a couple of weeks before Xmas. Not great for Em, so my gut feeling is to put it off til the New Year. Gotta think about the scary mortality rates, too. Ho hum! More stuff to think about - again! Not gonna make any decisions just yet - going to Menorca for a week soon, so will prob decide soon after that.
As for how the current treatment is going, still feeling pretty ok - dex is still doing it's thing (ballooning fizzog, not to mention the waistline - tho that could have something to do with eating like a bastard in Norfolk - and no sleep til... well, just no sleep, really!). Off for the next dose 2moro, so will ask what the light chains were from Monday's bloods - hopefully still dropping steadily - will let you all know when I do.
Bit knackered now, so off up the wooden hill to Bedfordshire - soz for the fairly serious/boring post, but I've got cancer, so fuck off if I'm not always entertaining!
Love you all, really!
Post soon,
A xxx
Well, we had a blinding week in Norfolk - fab time had by all. Definitely want to go back, maybe next summer.
More importantly, had my meeting with the Transplant Dude at the Marsden today - Pam (henceforth known as my Stem Cell Bitch) came with me. Didn't learn much that I didn't already know, but good to get some stuff I was unsure about confirmed. Did find out some new stuff, mainly about timing and what the Marsden team feel the next step should be. They are of the opinion that the allo is the way to go, but were at pains to point out that there are other options, such as Revlimid. As for the timing, from a purely medical point of view, then it's probably best to press on asap, but they did understand that I might feel the need for a bit of a break. What's more, even if we press straight on, and I only have 4 cycles of the Velcade, then I'm unlikely to be admitted before late Oct/early Nov, which could result in the possibility of only being out of hospital for a couple of weeks before Xmas. Not great for Em, so my gut feeling is to put it off til the New Year. Gotta think about the scary mortality rates, too. Ho hum! More stuff to think about - again! Not gonna make any decisions just yet - going to Menorca for a week soon, so will prob decide soon after that.
As for how the current treatment is going, still feeling pretty ok - dex is still doing it's thing (ballooning fizzog, not to mention the waistline - tho that could have something to do with eating like a bastard in Norfolk - and no sleep til... well, just no sleep, really!). Off for the next dose 2moro, so will ask what the light chains were from Monday's bloods - hopefully still dropping steadily - will let you all know when I do.
Bit knackered now, so off up the wooden hill to Bedfordshire - soz for the fairly serious/boring post, but I've got cancer, so fuck off if I'm not always entertaining!
Love you all, really!
Post soon,
A xxx
Thursday, 6 August 2009
East Angular, here I come! (In memory of poor old JG)
Hi All,
Just a quickie tonite. Went to RSCH for another dose of The Big Vee - all ok, just the usual fight to canulate. Stabbed 4 times by 2 nurses with no joy. But then comes the lovely Monika to the rescue! The Polish Queen of Canulation! Fab - straight in, no messing! I love that woman! Think she's really part vampire and that's fine by me. Have been slathering on the old Arnica cream in the probably vain (vein? Ha ha!) hope that I can keep the bruising at bay. Honestly - my hands and forearms look like I've been in a right old ruckus, or I've got a burgeoning heroin habit. Hey, that'd take my mind off things, I suppose - one up the sleeve for later; a full-blown narcotics habit.
Anyhoo, off to the rellies in Essex tomorrow, then to deepest Norfolk for some R&R on Sat. Really looking forward to it. Plan to do little besides sit about, eating and drinking too much. Fan-bloody-tastic!
Will post again when back.
With floppy bits of love,
Amanda xxx
Just a quickie tonite. Went to RSCH for another dose of The Big Vee - all ok, just the usual fight to canulate. Stabbed 4 times by 2 nurses with no joy. But then comes the lovely Monika to the rescue! The Polish Queen of Canulation! Fab - straight in, no messing! I love that woman! Think she's really part vampire and that's fine by me. Have been slathering on the old Arnica cream in the probably vain (vein? Ha ha!) hope that I can keep the bruising at bay. Honestly - my hands and forearms look like I've been in a right old ruckus, or I've got a burgeoning heroin habit. Hey, that'd take my mind off things, I suppose - one up the sleeve for later; a full-blown narcotics habit.
Anyhoo, off to the rellies in Essex tomorrow, then to deepest Norfolk for some R&R on Sat. Really looking forward to it. Plan to do little besides sit about, eating and drinking too much. Fan-bloody-tastic!
Will post again when back.
With floppy bits of love,
Amanda xxx
Monday, 3 August 2009
Invincible Velcade! Feelin' Groovy (well, Groovier, at least...)
Hiya all,
Had appointment at RSCH today - usual Monday Velcade (I'm starting week 2 of Cycle 2) and a consultant appointment. Left about 8.30, dropped off Em and the hound at my friend's (cheers, J!) and made my way. Didn't need to be there til 10, but have to account for the best part of an hour in the car park queue. But! Fortuitous happenstance! Only 3 (3! Count em'! 3!) cars in front in the queue - unheard of! So, I was on the Unit by 9.30 - not necessarily a good thing, cos I wasn't due to see the doc til 3.30, but the Velcade doesn't get made up til my bloods are done, so sometimes every minute counts. Then, the Velcade was made up and back from Pharmacy in record time. I was all done and dusted on the drug front by about 12.30. So, just the 3 hours to kill before seeing the doc, then. Never mind, I thought, I'll grab some lunch (extremely good Beef & Tomato Hotpot in the Pebbles Restaurant at RSCH - to be heartily recommended) and go for a walk down the seafront. Boy, was it hot! Even had to seek out some shade. Wandered back in good time for the 3.30 appt. That'll be the 3.30 appt that became a 5.25 appt! Long day, to say the least.
Anyway, down to the nitty gritty. Something of a mixed bag, I suppose. The MRI results were much as I expected - there is involvement in my spine and pelvis. There is some collapse of a couple of vertebrae in my neck (must be the weight of all the brains - or the thick skull), but this is pretty much consistent with my diagnosis and the Zometa (a bone-strengthening biophosphonate drug I receive every 8 weeks via IV) should help arrest any further deterioration. There's also signs of some kind of vascular degeneration (can't remember the actual term given) in the joint of my right hip, which could potentially mean a hip replacement some time down the line. It's been caused by the lovely Dex (oh, how I adore those tiny pills of delight! Little fuckers!). I'm not in any pain with it at the mo, it could come to nothing anyway and, frankly, they can replace as many joints as they like, if they get me through the mm crapola. Hack away, guys! Really couldn't give a flying fuck. Hip replacement surgery will be a piece of piss, after two SCTs and two other rounds of chemo!
Now for the good news. There are various ways that they monitor the activity levels of mm and in my case, the light chain levels in my blood seem to be the best way. The doc checked them today and, given that it wouldn't be unknown to see little or no improvement at this stage, he told me that they're falling fast and it looks like I'm getting a remarkably good response to the Velcade. So, with the two of us second-guessing what the Marsden transplant team might recommend, I could be looking at just 4 cycles of Velcade, which should end by late Sept, if there's no delays (delays can happen if I were to pick up an infection, or start to have bad side effects, for example). So if that is the case and they want to press on with the transplant on the hurry-up (as I think is usual), then I could be looking a being in for the allo by, what, late October? Out and backing away from death's door in time for Christmas, hopefully? All guesses, but educated ones (by the doc, at any rate).
So, that's where I am so far. Seeing the Marsden two weeks on Weds, so hope to have at least a vague plan of the next few months by then. I'll try to post again before that, but we're off for a week on Sat with Pam (harbinger of the Holy Stem Cells) and Olivia for a restful week in a chalet on the Norfolk Broads. No internet connection, so no blog. Just sitting on my fat, Dex-ed arse, eating too much. Since seafood (amongst other things) will be off the menu for a long time post-allo, I feel it is my solemn duty to stuff my chubby cheeks with as much of the stuff as I can, while I can. A duty, I might add, that I'm undertaking with my usual sober demeanour - lobster thermidor for breakfast, anyone?
Closing now - soz it's been such a long one, but you might have to wait for a while for any more Amanda-lovin'! You unlucky/lucky* people! (*delete as applicable)
Hunkous great wobbly chunks of slobbery lurve,
Amanda xxx
Had appointment at RSCH today - usual Monday Velcade (I'm starting week 2 of Cycle 2) and a consultant appointment. Left about 8.30, dropped off Em and the hound at my friend's (cheers, J!) and made my way. Didn't need to be there til 10, but have to account for the best part of an hour in the car park queue. But! Fortuitous happenstance! Only 3 (3! Count em'! 3!) cars in front in the queue - unheard of! So, I was on the Unit by 9.30 - not necessarily a good thing, cos I wasn't due to see the doc til 3.30, but the Velcade doesn't get made up til my bloods are done, so sometimes every minute counts. Then, the Velcade was made up and back from Pharmacy in record time. I was all done and dusted on the drug front by about 12.30. So, just the 3 hours to kill before seeing the doc, then. Never mind, I thought, I'll grab some lunch (extremely good Beef & Tomato Hotpot in the Pebbles Restaurant at RSCH - to be heartily recommended) and go for a walk down the seafront. Boy, was it hot! Even had to seek out some shade. Wandered back in good time for the 3.30 appt. That'll be the 3.30 appt that became a 5.25 appt! Long day, to say the least.
Anyway, down to the nitty gritty. Something of a mixed bag, I suppose. The MRI results were much as I expected - there is involvement in my spine and pelvis. There is some collapse of a couple of vertebrae in my neck (must be the weight of all the brains - or the thick skull), but this is pretty much consistent with my diagnosis and the Zometa (a bone-strengthening biophosphonate drug I receive every 8 weeks via IV) should help arrest any further deterioration. There's also signs of some kind of vascular degeneration (can't remember the actual term given) in the joint of my right hip, which could potentially mean a hip replacement some time down the line. It's been caused by the lovely Dex (oh, how I adore those tiny pills of delight! Little fuckers!). I'm not in any pain with it at the mo, it could come to nothing anyway and, frankly, they can replace as many joints as they like, if they get me through the mm crapola. Hack away, guys! Really couldn't give a flying fuck. Hip replacement surgery will be a piece of piss, after two SCTs and two other rounds of chemo!
Now for the good news. There are various ways that they monitor the activity levels of mm and in my case, the light chain levels in my blood seem to be the best way. The doc checked them today and, given that it wouldn't be unknown to see little or no improvement at this stage, he told me that they're falling fast and it looks like I'm getting a remarkably good response to the Velcade. So, with the two of us second-guessing what the Marsden transplant team might recommend, I could be looking at just 4 cycles of Velcade, which should end by late Sept, if there's no delays (delays can happen if I were to pick up an infection, or start to have bad side effects, for example). So if that is the case and they want to press on with the transplant on the hurry-up (as I think is usual), then I could be looking a being in for the allo by, what, late October? Out and backing away from death's door in time for Christmas, hopefully? All guesses, but educated ones (by the doc, at any rate).
So, that's where I am so far. Seeing the Marsden two weeks on Weds, so hope to have at least a vague plan of the next few months by then. I'll try to post again before that, but we're off for a week on Sat with Pam (harbinger of the Holy Stem Cells) and Olivia for a restful week in a chalet on the Norfolk Broads. No internet connection, so no blog. Just sitting on my fat, Dex-ed arse, eating too much. Since seafood (amongst other things) will be off the menu for a long time post-allo, I feel it is my solemn duty to stuff my chubby cheeks with as much of the stuff as I can, while I can. A duty, I might add, that I'm undertaking with my usual sober demeanour - lobster thermidor for breakfast, anyone?
Closing now - soz it's been such a long one, but you might have to wait for a while for any more Amanda-lovin'! You unlucky/lucky* people! (*delete as applicable)
Hunkous great wobbly chunks of slobbery lurve,
Amanda xxx
Sunday, 2 August 2009
All Puffed Up and No Place To Go...
Well, here we are in the middle of the business end of Cycle 2 and it's been a bit of a funny old day. The bloody dex has really been doing it's thing - my face is starting to puff up nicely, my taste buds are disintegrating and I've had no more than 3-4 hours sleep per night this week, which is simply not enough! So, last night, I took drastic action and abused some painkillers. Two tramadol later and I managed about 6 hours sleep. Paid for it in spades, tho - have spent the day feeling ever so slightly numb all over, with a head full of cotton wool. Don't think I'll be doing that again in a hurry. I'd rather be knackered. Hoping I can sleep the remainder off tonight, since I'm schlepping back down to RSCH tomorrow for a long, fun-filled day of Velcade and consultant's appointments. Will finally find out what was found (if anything) on my last MRI. Can't say I'm expecting good news; seems to be a bit thin on the ground for me... Sorry, having a bit of a wallow...Oh, bollocks to it all! Just need a decent night's sleep, without resorting to more fucking drugs! Think I could cope with anything, if I could just get that! We live in hope...
I'll keep this short, since I don't want to get any more of a misery guts! I'll fill you all in on the MRI cobblers asap.
Love, with big fat chops,
Amanda xxx
I'll keep this short, since I don't want to get any more of a misery guts! I'll fill you all in on the MRI cobblers asap.
Love, with big fat chops,
Amanda xxx
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