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
Monday, 19 October 2009
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
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