I don't really know what to say except I've received a lot of comfort from reading other people's posts on Headway. I also suffer from lack of information about my condition and information on living with it.
It seems any operation would be dangerous as I take warfarin having had a heart valve replacement operation a few years ago. I was shocked at the diagnosis and completely went to pieces, imagining I could die at any moment.
This was very difficult for my husband, I know I should be grateful to be living at all but I was very down. I still am but more able to cope now and pretend everything is not too bad.
Every one seems very supportive on this forum and most have far more to cope with than I have at the moment so thank you all.