Thursday, 29 April 2010

78. Breast Cancer Care Family History Forum UK


It was a bit but I made it to London (UK) to the first Breast Cancer Care Family History Forum. It was so good to finally meet two of BRCA Umbrella's Administrators, Jennifer and Caroline (who escaped this photo unfortunately), and to catch up with Lisa, Elaine and Rian from last years Race for Life weekender. It was good to meet some new faces and sad to see so many women with this damned gene mutation.

It was was a very well structured day that started with human bingo as the icebreaker, an intro from the Breast Cancer Care team and then a much needed tea, coffee and biscuit break. The day's highlights for me were the break out groups, with me in the preventative surgery and gene mutation identified group. The first session was an hour of just general chat amongst ourselves, sharing experience and questioning each other about things. The second session was recorded and guided by a facilitator so we didn't veer horribly off track. She asked key questions:

What support needs do you feel are missing from the NHS?
What do you feel was missing from your surgery care by the NHS?
What would you like to see developed as a support system for BRCA community?

We talked of many things, like;

- being asked for moulds of our nipples for prosthetics before they get incinerated forever.
- being put in touch with some form of support group long before surgery is decided.
- having an MRI following a positive diagnosis for BRCA1 or BRCA2 or identified as High Risk.
- having the right to see any breast reconstruction surgeon anywhere in the country instead of being channelled into just what procedure your local surgeon does
- having regular face to face BRCA support groups to meet and discuss all these things and more with real, live people.

There was a great talk about Genetics by a specialist and she answered as many questions as we could fire at her. I think this highlighted the need for a proper forum to discuss these things with professionals rather than scaring ourselves witless with things from the internet!

All in was brilliant. 50% of the attendance were BRCA Umbrella members and we wore our badges with pride, we found a way of supporting each other in the absence of such support, we made BRCA Umbrella the support community it is and it is time to step it up a gear! Watch this space!

Thursday, 22 April 2010

77. Out of touch

I went awol for a bit there. Sorry folks. Nothing BRCA related, well, not really apart from the abnormal CA125 (ovary screening blood test)that came back and I had to retest. It is the first time I have really worried about my ovaries. With no evidence of ovarian cancer in my family history (even with the BRCA1 gene risk factor of 40-60% lifetime risk) I sit on my laurels about Ovarian Cancer and maybe I shouldn't. My doctor told me only 2 days ago that I just can't be thinking about ovaries just yet, or revision of my reconstruction scars, or nipples, I have to concentrate on my current health issues: neck and lumbar spine.

Yes, the saga continues. I have an MRI scan for both next Tuesday which I am actually looking forward to. My hip pain has worsened in the last year and my lower back pain that I used to ignore has now become a daily chore since my surgery. I think the lack of Lat Dorsi muscles have exposed an existing problem and it is time to sort it out. My neck is still troubling me everyday and even light exercise on the Wii saw me in agony for a week with daily massage and disturbed sleep. I am signed off at the moment and damned glad. Both problems make daily life painful and is so boring.

Good news! My sinus infection cold appears to have passed (6 week companion) and my bronchial infection is mostly gone but is still lingering but I am using an inhaler for the first time in my life to see if this helps...or else it is off for a chest x-ray.

So, you see..i have more than enough on my plate at the moment, BRCA stuff will have to wait, which bothers me because it bothers me and I want to be on the complete list. I am more than frustrated with my lot right now. Well, them be the cards dealt, gotta live it out and all will resolve.

I would like to book a calm period in life please, a bit like a holiday where there are no worries.

I am frustrated to not be able to log my breast reconstruction progress in an ordered manner but that is just the way the cookie crumbles.