Hi folks, quite a few people have been trying to find out how I am from my now seriously out of date blog. Sorry!!
Well, I’m generally doing fine: still in remission and only having appointments about every 6 weeks. Would be longer but my immune levels are still trundling along at the low end of normal and I guess my recovery is still a bit slow, especially in terms of stamina.
Some medical details for the interested: I didn’t have polymyalgia. My muscle aching did improve a fair bit until recently when I went down with a mysterious bug/virus (not swine flu - but had to have millions of swabs etc just in case) and have gone backwards a bit. My nerve ending tests did reveal marked deterioration in sensation in my feet and legs since the tests a year ago - much as I thought. I have been trying Gabapentin which helps with the nerve ending pain (and is also used by epileptics btw). It’s strong and you have to build up the dose - in my case to 12 tablets a day. It really doped me up - I was sleeping solidly (first time for years) but feeling very, very groggy on waking. So I weaned myself off it, only to realise that actually it was helping with the leg and foot pain, perhaps more than I thought. So when I have finished with these nasty antibiotics, I might try to very slowly build back up to a dose I can tolerate.
I have continued with the clinical psychologist appointments which have been very helpful. I can see that I’m not only dealing with the cancer issue itself and my worries about how that has and will affect the family, but also am in a sort of mourning for my job now I am retiring. It’s quite upsetting sometimes, but I think has been very positive in exploring a whole range of issues. I will say more on this when I’ve got more time in the future. I have been given a ‘mindfulness’ DVD which is also interesting in its approach. I do think it’s important not to constantly give out a message that cancer sufferers are all ‘brave’ etc - sometimes we are and sometimes we’re not and it’s important to acknowledge that life-threatening diseases have both physical and mental repercussions both of which should be treated/taken seriously.
What else - well I have done a fair amount of union stuff, even doing a few events (including one very short march!). I’ve pottered in the garden and we’ve been away to the Isle of Wight for a break and to scatter mum’s ashes at last. Currently I’m suffering the usual side effects from very strong antibiotics for my bug - I always get thrush and lose my appetite. I’ve also had a whole batch of childhood vaccinations (my immunity was wiped out by the transplant) and am due to have a booster dose of some of them tomorrow if I’m well enough - I have been warned I’ll feel worse this time round - oh joy!
Not much else to report that I can think of - I’m hopelessly foggy by this time in the evning. I will try to do some short updates a bit more frequently. Meanwhile, thanks very much for everyone who has sent messages/emails - I will get back to you all, but am just a bit slow at the mo as I’m tired. Have a lovely summer - try not to let the weather get you down!
August 6th, 2009 at 7:31 am
Hi Sarah,
Glad to hear you are ok - hope you enjoyed your holiday.
I have also recently ‘retired’ and I am just off now for my monthly check up.
Will email shortly.