Good grief – was it that long ago I last wrote? So sorry!
I’m now on my 8th monthly round of meds and it is pretty wearing, but still manageable. My levels have continued to fall, although the rate of fall is much slower now. There was a stall in progress the month I had shingles which worried me at the time and made me nervous last hospital visit (the blood test results follow quite a time after the event) but it was OK! My immune levels were very low, but not low enough to stop the treatment and I just try to be careful – not too much going out or socialising, keeping hands clean etc.
The weeks follow quite distinctive patterns - Mondays are so-so and then I have a large wodge of steroids on Tuesday morning and feel fairly perky Weds and Thurs although they often affect my sleep and digestion. Weirdly I develop bright red cheeks all through Wed, which then fades through Thursday! I then get withdrawal Fridays, Sats and Sundays, and feel pretty dire. The main side effects are: very tired, bad aches and twinges inside and out, bloating, wind, low mood and shaky legs and knees, sore mouth sometimes. It’s a nuisance for it to coincide with the weekend when Bob is at home, but the rounds have to start on the day I see my consultant and Tuesdays are her clinic day.Depending on results I then get the next lot of drugs for a month.
At the moment I am still taking Gabapentin for post-shingles pain and that has helped me to sleep a bit better. But I am trying to reduce down to one tablet, as they make me pretty stupid too! My Warfarin levels have settled down now and I just get tested once a month.
I have reached a sort of plateau in my mood – there are times it feels depressing and appointments make me (like many cancer patients) nervous, but now spring has come and I can potter about I feel more cheerful. I have been extremely busy since Xmas with union work – we have run another major public meeting, a demo and a march and rally against the cuts, as well as fund-raising events and stalls and this was all very tiring although most of my work is done by computer and phone. I don’t go to meetings as a rule. However, it has kept me occupied and I will be getting some help from others from now on, especially with publicity and events. I hope to get to the TUC march – I will be going straight to the rally as walking a long way is not possible now and won’t be staying long.
I do want to get a bit fitter and hope to do more exercise to strengthen my leg muscles – more time walking on the trainer I think!
So generally ticking along. We hope to have a few days away at some stage which will be good – I do need a break from the house!
I’ll try to update again a bit more regularly in future. But generally no news is good news!
Hi Sarah,
Thank you for this update – as informative as ever. I’m hoping that you and Bob will be able to come over in August (Maybe a Wednesday?). We could lunch and visit the gardens if you were up to it.
Jane x
PS Thanks for all that work you are doing on behalf of so many teachers – we’re all very grateful for it.