Hi everyone
I've been trying to find/set up a local group to support//winge/chat and laugh, for a while. Just to meet up occasionally, swop emails and phones for ad hoc chats, for instance, would be great.
About me - I live in Claygate (near Esher) am married with two adult children. I was diagnosed in 2013 with mets in liver and bone. (No primary diagnosis - straight to secondary, I don't do things by halves). Initial chemo with three years of Letrozole and Zometa quite happily. However a scan discovered a PIK3 mutation in October and I was lucky enough to be accepted on to a trial. I've been on the treatment for almost three months and so far so good as far as the medics are concerned. However it is hard work and I've realised that a lot is down to me - best nutrition, what makes me feel queasy, which pills help, which ones to throw (one regime they came up with had me taking a laxative and diarrhoea medication at once).
But more importantly, I'd just love to swop thoughts about how everyone is getting on with life. For instance, the second diagnosis has knocked my family sideways. I think because I have seemed less well on a day to day basis than I did with original chemo. Or maybe they had just got comfortable with the first diagnosis. This treatment is more difficult than the original chemo but because I haven't lost my hair, my friends think everything is fine.
Hope to hear from some like minds soon.
xx
