Hello , I’ve just read your profile and I’m sorry to hear about your spread when you probably thought you were home free, that feelings horrible isn’t it. You’ve said your on chemo tablets and finding it hard I was wondering what sort of side effects you were having or wether it’s the emotional stuff making things hard?
To help you find your way around I thought I’d point you in the direction of the groups to chat with people with similar experiences. I haven’t had the same cancer as you, but I know how I felt when I’d successfully had treatment and it returned again in a year.
You may wish to join and be notified of discussions in the brain cancer group, I’ve put the link below.
The in my area tab is useful to find a support group in your area, some of them don’t just meet for a coffee and a chat but do social gatherings or park runs together, or it might point you in the direction of gym sessions.
The information and support tab, has all sorts of useful info you could look up your chemo tablets and read about side effects, or read about coping emotionally, practical stuff on eating well.
The ask an expert bit above, you might want to talk to your own hospital nurse for help on coping with a side effect, but there’s also a bank of volunteer experts in the ask an expert section including nurses, financial people etc.
Ive wittered on enough, just press reply if I can help any further, and I wish you luck in your coping.
It’s not just the chemo I’m having to deal with but also the time I have left. Next month will be my third cycle and then I should find out a rough prognosis. Possible 4 years hopefully I was told, hoping that the chemo will buy me some time.
Ahh , I understand a lot more now, the time waiting to see if your treatment is working can seem to go very slowly including the waiting between the scan & the results . I remember those times as being the most anxious. I also had the fortune that when my first treatment had been working and then there was a progression that my second treatment wasn’t originally available on the NHS, so prognosis can alter as well, due to new treatments becoming available.
I wish you luck in your wait, during my wait for scan results I’ve been trying to think of three good things that have happened every day to focus on something good.
