Sat.16th Jan. 2010 'Interesting stuff'

It's been a little while since my last entry, which is usually a good sign that all is well. I want however, to continue with some thoughts regarding breast cancer as I've recently listened to a couple of radio 4 programmes which were not only very interesting, but confirmed some of my feelings and experiences as a victim of this dreaded disease.

The first programme was an interview with Barbara Ehrenreich, author of 'Smile or Die' a book I now have on order. Barbara is the lady whose article I linked on my previous blog. She too had breast cancer and writes about her experience in relation to the 'be positive or die' culture which seems to exist and I get the impression it's worse in America.

As I said to my friend Joan today, it's not that we don't really appreciate the comfort and support, or that we're not positive. It's being able to be open too about the insecurities and very real fears which also exist, and not being made to feel as though we have to hide any negative feelings, because God forbid, we should not be one of the 'lucky' ones and people might say "well, if she'd been more positive she may have survived". Much research has been carried out into the latter theory, and it has been categorically proved that it bears no relation to survival rates.

Anyway I intend to read the book, so maybe more on this later. The other programme was on 'Woman's Hour' and featured MacMillan's recent research into victims of breast cancer, specifically what happens when treatment has finished and the many irritating/frustrating residual side effects, which so far have not been documented or even acknowledged.

All I could do was nod in agreement with the lady they questioned. The void which suddenly exists when you finish chemotherapy and/or surgery is hard to describe. The words "see you in six months" ring around your head as you drive away. I remember it so well, even though I have to have Herceptin every three weeks, it was like being 'cast adrift'. For a while I felt really lost and down. It wasn't until I initiated contact with my 'support nurse' that this began to improve.

As for annoying side effects, well, don't get me started. I would be a really good candidate for any research I'm sure. I have suffered pretty extreme stomach problems since I finished treatment, but not only that, I have been left with other strange phenomena, for which I have my own theory, not that anyone has been interested in it.

As the interviewee said, most of the strange problems feel too trivial to bother the Doctor with, but they affect daily life and cumulatively can be very depressing. All of mine I believe relate
to the epithelial cells, cells which regenerate constantly and line such places as the nose, the mouth, the gut, stomach, bowels and private bits!

I have a constantly drippy nose, which streams when I eat. I have also not been completely free of a sore nose, which bleeds on a morning and sometimes feels like someone has driven a bus up there. I still get mouth ulcers easily. I now have what I believe is 'irritable bowel syndrome' which seriously affects my working capability at times. Also I am constantly itchy and sore down below and lastly, I don't heal as well as I used to, small grazes, blisters or bruises take ages to heal. Apart from that I'm fine ! :-)

Anyway, I will be watching for further news on this front, but in the meantime will remain ever 'positive' ha ha!