Tuesday, 24 February 2009

41. BRCA Support Group anyone?

Its been a couple of weeks since I last posted, believe me, it is not because of lack of things to post, just very busy dealing with the complications of what is my daily life right now and developing the BRCA Umbrella social and support network site for BRCA+ people like myself. My feet haven't really touched the ground since it was born whilst in the background my operation draws ever closer.

Today, I went to a support group session with other BRCA+ people at the Royal Devon & Exeter Hospital, Force Centre (not in any way connected with FORCE USA, just a coincidence of name). I met my first two ladies outside of my family with BRCA+ gene. We didn't chat in depth about ourselves but conveyed our struggle through the system to find information. Both ladies had already had breast cancer and then been diagnosed with their gene mutation but I am ahead in the race at the moment. Anne Searle is a genetic counsellor and conducted the group, gleaning information and experience from us about where the NHS BRCA support system could do with refining. I think that is probably an inadequate word 'refining'..more like to identify the missing gaps in the system - chasms sometimes.

So much in depth discussion happened during the session that I can only summarise that it showed the enormity of being BRCA+ and the multi faceted problem of living with such knowledge with the consequence of its power to effect the rest of your life, your maternal feelings, your health and your entire family across generations.

All ladies there today are facing their BRCA gene and its risks and the implications carried beyond ourselves, all concerned about the next generation, what to do, how to tell family, what surgery to I have, who to talk to..etc. We had all struggled to find our way into that room today but were very thankful to be listened to. Change is coming.

So, the BRCA gene mutation; a missile, an opportunity to blow the chances of breast and ovarian cancer risk out of the water but with so many bloody knobs and buttons to guide the damn thing to a destination of safety. Sometimes I feel like it might go off mid-flight. I don't want to pilot this thing all the time I would like someone else to please take over for a little while.

I wish I could forget - is there a time when I have been free of this thing? Probably but so long ago I can barely remember..oh, hang on..skipping through fields of wheat with my friends on a summers evening - days when I was free, when I was a child.

Sometimes I worry about my sanity, this BRCA thing is just a sliver of my life yet everything hangs on it at the moment but that will pass and life will continue. I just wish everything else wasn't so complicated at the same time. My poor husband came home today unhappier than I have every seen him. His job makes him so tired yet we need it to keep struggling on financially. Being partially disabled he is tired, worn out, mentally at a crossroads about work yet financially under pressure to be there, worried about his knees and the increasing pain he is in these days, looking after me when I need him, keeping our house, keeping things going and in the background the recurring worry about his son and his ex's selfish behaviour. It just feels like too much. We are both tired. I hate to think what this would be like if we had kids to look after too. Life feels very unstable at the moment, I am grateful to be free of worrying about my children too.

I wish I could change things for us, I am trying real hard. I just feel very helpless in my own personal life whilst my campaign in sharing my and other people's BRCA journey continues in positive great leaps and bounds. I hope that someone reading this who is struggling with their own diagnosis, I hope you reach out to others and share, isolation is very hard and life gets in the way of this thing you are trying to fight too. I have realised that my passion is in trying to make it less of a desert, more of a comfy sofa coffee morning place to find answers and share.

BRCA Umbrella - gather, shelter, weather the storm and on a sunny day - go for a walk back into your life and move on.

Tears today, lots of emotion, sadness for my husband and his struggles with everything.

And the clock is ticking..how many weeks now?