So much has gone on this last week or so....it is like a disaster film really. Everywhere I turn I seem to get told bad news but perhaps that's just life as you get older. So, I'm going to try to stay positive with it all!!! Hurrah! So today's post is an update...not to be negative but just to give some facts.
This cycle has seen mixed side effects. Up till Saturday, I'd been doing really really well which is good news. Even the peripheral neuropathy seemed to have calmed down and all was looking great. Me being me though had wondered if that meant the drugs weren't doing their job. Well, that will teach me to worry about everything, as Saturday afternoon brought the start of the exhaustion again (probably partly to do with all the bad news I'd been hearing) and then by Monday, I had started getting quite bad PN in my feet and hands. Which has now nicely spread into my calves. It is a really weird sensation....the soles of my feet feel like they're on fire and my calves feel like I have shin splints in them. Peculiar! It's been pretty frustrating as it hurts a bit to walk downstairs and to crouch etc.....I know, I should just stop crouching and walking downstairs....lol!
Anyway, I've spoken to the hospital and it sounds like there may be some medication they can give me to help with the burning sensation but unless I travel down there I can't get it so I'm hoping it calms down over the next day and I don't need to do that....as much as anything I'm not sure how safe I am to be driving long distances - Nick would probably have to take the day off work to take me down there and I'd rather avoid that if I could. He's been a gem though and has taken the kids to school today so that I could just stay and chill at home...which I have done. Feet up and doing nothing....unheard of but very very blissful!!
There is a list of supplements that Dana Farber(a well known cancer hospital in Boston, Mass.)
ReplyDeletereccommends to help protect your nerves from the damage caused that leads to PN. You could probably do a search and find them. Tim's PN from Velcade did go away after he stopped it. It took about 4 months to disappear. Glad you got the chance to relax. Hope this resolves and you feel better.
Hi Debs
ReplyDeleteHi from the Myeloma UK discussion forum!
I just found your blog via another Blogspot site: lornaandmickyour-loma. It's so good to see other UK people sharing their experiences. I hope it's ok to add you to my blogroll? You're welcome to add mine if you wish.
I am so impressed that people have and continue with lives that include jobs and children. I have neither and I'm wrangling with the idea of getting a dog. LOL!
Hope you can keep on putting your feet up and sleep when you're tired. The body does most of its healing while you're asleep.
P.S. You might want to post something on the forum about your blog. Others may find it helpful/interesting...?
Jet
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