Hello All!
Well, all is set for the Allo in the New Year. I'm due to go in on Friday 15th Jan, with the actual transplant to take place on the 20th. The two weeks before I go in are a mental round of appointments in Brighton and at the Marsden, for various tests and not forgetting, of course, the lovely Hickman line insertion. Mmmm...can't wait for that one! I just love having cables hanging out of my chest! It's a bit like having "Hey everyone! I've got cancer!" tattooed across your forehead. Oh well, gotta be done, I suppose. The upside of the utter bunfight of those two weeks is that they'll be such a collosal pain in the arse, that I'll be glad to get into hopsital for a bleedin' rest! At least I know a bit of what to expect this time - I know I'm not having the same treatment as last time, but I know more about ward routines, etc. Scant comfort - can you hear that strange sound? It's straws being clutched at!
I intend to blog regularly after Christmas, during the lead up to going in to hospital and also once I'm there, but (unless something really worth telling happens!) this will be my last post for 2009. I'm planning to spend Christmas in a haze of alcohol, seafood and lightly-cooked eggs (and all the other things that will be verboten, post-allo) - can't wait!
Wishing you all a fantastic Christmas and I'll be bothering you all again in the New Year.
With love and snogs under the mistletoe,
Amanda xxx
Tuesday, 15 December 2009
Sunday, 6 December 2009
Dresses and stresses...
Wotcha, me muckers,
Another busy week - what am I like? Stupid, I hear you cry!
Went to my friend/sister-in-law Juliet's 40th birthday party last Friday. She held it at a lovely venue - Highley Manor. It's an old manor house that's been converted into a small hotel. Really fab place. Had a terrible time deciding what to wear tho! I'm crap at the whole getting "dressed up" thing. I'm rarely out of sweatshirt and jeans, so party dresses fill me with horror at the best of times - even worse when steroid-bloated with a mental patient's haircut. I'd bought 4 dresses by the morning of the party and said to myself, "Fuck it. I don't like any of them!" So I went shopping again! There's nothing like leaving it til the last minute! Concentrates the mind - found a great dress in about 10 minutes flat. And it was all of £18! I do love a bargain - hurrah for New Look! Anyhoo, the party went with a bang - Juliet was v nervous that no one would turn up! Silly moo - loads of bods and more or less all gussied-up to the nines. Everyone looked great and Em and I had a fab time. We'd decided to stay over - seemed like a good idea; better than fucking around with taxis and far better than not drinking! We had a lovely room, but unfortunately it was right over the disco, so even though we wimped out at about 11.45, we didn't get any sleep til the disco ended, at about 1.30. Bit wiped the next day, to say the least.
Went to see Eddie Izzard on Monday night with my friend Alison. Man, he is one funny dude! Lucky I'd had a caesarean (sp?) and kept my passages honeymoon-fresh, or I might have had an urgent need for some Tena Lady! Brilliant stuff. Rather less brilliant was every fucker and his wife wanting to leave the carpark at the same time! Still, it was worth it.
Em and I went to see "Nativity!" today - really silly and funny; if you like Christmas films, go see it. The kids in it are brilliant, really natural and one or two are hilarious.
Now for the serious bit. Had an e-mail from the Marsden, outlining the protocol for my transplant in January. Oh fuck! Makes it all seem a bit real now. Since getting it, I keep finding myself with a clenched jaw and my shoulders up around my ears - not that I'm consciously thinking about it constantly, it's like a background tension all the time. It'd better bloody tail off - I can't keep this up for the next 6 weeks. I'll have a sodding heart attack before I get the chance to go in for the transplant if I keep feeling like this! I think the only way to deal with it is to not deal with it, if you know what I mean. Spend a few weeks with my fingers in my ears, going "la la la not thinking about it la la la" very loudly indeed.
Think that's all for now.
Will post again soon with more crapola,
A xxx
Another busy week - what am I like? Stupid, I hear you cry!
Went to my friend/sister-in-law Juliet's 40th birthday party last Friday. She held it at a lovely venue - Highley Manor. It's an old manor house that's been converted into a small hotel. Really fab place. Had a terrible time deciding what to wear tho! I'm crap at the whole getting "dressed up" thing. I'm rarely out of sweatshirt and jeans, so party dresses fill me with horror at the best of times - even worse when steroid-bloated with a mental patient's haircut. I'd bought 4 dresses by the morning of the party and said to myself, "Fuck it. I don't like any of them!" So I went shopping again! There's nothing like leaving it til the last minute! Concentrates the mind - found a great dress in about 10 minutes flat. And it was all of £18! I do love a bargain - hurrah for New Look! Anyhoo, the party went with a bang - Juliet was v nervous that no one would turn up! Silly moo - loads of bods and more or less all gussied-up to the nines. Everyone looked great and Em and I had a fab time. We'd decided to stay over - seemed like a good idea; better than fucking around with taxis and far better than not drinking! We had a lovely room, but unfortunately it was right over the disco, so even though we wimped out at about 11.45, we didn't get any sleep til the disco ended, at about 1.30. Bit wiped the next day, to say the least.
Went to see Eddie Izzard on Monday night with my friend Alison. Man, he is one funny dude! Lucky I'd had a caesarean (sp?) and kept my passages honeymoon-fresh, or I might have had an urgent need for some Tena Lady! Brilliant stuff. Rather less brilliant was every fucker and his wife wanting to leave the carpark at the same time! Still, it was worth it.
Em and I went to see "Nativity!" today - really silly and funny; if you like Christmas films, go see it. The kids in it are brilliant, really natural and one or two are hilarious.
Now for the serious bit. Had an e-mail from the Marsden, outlining the protocol for my transplant in January. Oh fuck! Makes it all seem a bit real now. Since getting it, I keep finding myself with a clenched jaw and my shoulders up around my ears - not that I'm consciously thinking about it constantly, it's like a background tension all the time. It'd better bloody tail off - I can't keep this up for the next 6 weeks. I'll have a sodding heart attack before I get the chance to go in for the transplant if I keep feeling like this! I think the only way to deal with it is to not deal with it, if you know what I mean. Spend a few weeks with my fingers in my ears, going "la la la not thinking about it la la la" very loudly indeed.
Think that's all for now.
Will post again soon with more crapola,
A xxx
Tuesday, 24 November 2009
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
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
Thursday, 5 November 2009
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
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
Monday, 19 October 2009
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
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
Tuesday, 6 October 2009
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
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
Monday, 28 September 2009
"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
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
Friday, 18 September 2009
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
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
Monday, 7 September 2009
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
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
Monday, 24 August 2009
Who ate all the pies? Oh, that'll be me then!
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
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
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
Tuesday, 28 July 2009
And when I get that feelin', I want Dex-ual healin'...
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
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
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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