Thursday, 5 September 2013

BRCA1 Lunar0 Still in Play...

So, I got my BRCA1 result. Positive. The evening skies have run with fire and blood ever since. Clearly I and all my good friends are quite bad at thinking negative, even when we try. But thank you for trying.

There are options, none of them simple or free of trauma or entirely satisfying.

I can walk away, forget about it, get on with the rest of my life.

I can have lots of screening - MMRs and mammograms. Until...

I can dedicate myself to my health in a web of ways outside of Western medicine.

I can have my breasts cut off now and my womb and ovaries taken out when I'm 40, in five years time.

No way can I forget about it. The horror of orphaning Pickle when she's already been through so much is unspeakable. It has run ragged through my nightmares and slashed me awake many nights. So no walking away for me. 

Screening, for me, feels like a rollercoaster which you know is more likely to end badly than not. 'Badly' might not mean death, but in my situation, chemotherapy is just not possible either. Of course my wonderful community would help me - they thrive on a soup and sympathy rota - but I would not be able to care adequately for Pickle for a long time, and how could I get her to believe that I would get better when we couldn't be sure and we thought that about her dad? No. Not my choice.

If I didn't have Pickle; if my death wouldn't mean a small girl lost the last of her nuclear family; I really might immerse myself in my own wellbeing (do please write in with the reason we're not all doing this anyway) in may ways, particularly Traditional Chinese Medicine which has some form here ('some' meaning thousands of years). I might aim for quality of life and spend some of that time praying for maximum quantity too. I feel that would be the most courageous choice, the most life-affirming, self-loving. The biggest YES to the universe which is asking me, Do you want to stay? But, and this is new for me, I am tempering courage with a stoic clarity of mind. Yes, this is the best option for me-in-a-vacuum. No, this is not the best option for me-in-my-life. My wise friend reminded me I needed to listen to a voice other than my Tiger Mama to make sure my decision was right. I did. I found this voice, which says with Falstaff: 'The better part of valour is discretion; in the which better part I have saved my life.' 

Which leaves me with cutting off my breasts. There are nicer or (not and) more clinical ways of describing a double mastectomy, but I challenge you to find a truer one. It is, however, a much more complicated procedure than I had imagined, with grotesque decisions to be made. The big one is to reconstruct or not to reconstruct. This I don't have an answer to yet, although I am swayed by these beauties.

It was my mum who first called a halt to this gene's secret snaking down our bloodline. After early breast cancer, then an unusual form of ovarian cancer, she was offered a DNA profile and found BRCA1. A flurry of 'relatives letters' went out, bringing fear, but also new choices to many homes in my extended family. She will have a double mastectomy very soon, but first, to help us prepare for the gamble of our breasts for our lives, she and I will celebrate our bodies as they are with some life modelling for a couple of particularly lovely and talented artist friends.

It's been tough. I've been stressed and irritable by day - not a fun person for poor Pickle to live with - and tearful and insomniac by night. But I'm accumulating dribs of acceptance and have much support, not least acupuncture from Tom Hirons of the admirable Source Point Community Acupuncture clinic.

I am left knowing only this for sure: I do not want to die. Not yet. There's Pickle to consider, and my family's been through enough grief with losing Thomas and not knowing how long we'll have our mum with us... but it's not only that. I love this life. Truly. I'm still racked and wrecked by grief sometimes and there are things happening in the world on a scale of horror beyond my comprehension. But this world is such a beautiful place still. I remain deeply grateful for every rising sun and moon and tide and shoot and even early three-year-old. If I go ahead with this surgery, it will not be because I am afraid of cancer, and certainly not of death. It will not be about fear at all. It will be because I have a gene which could be the death of me and the woman who once gave me life has now given me the chance to stay alive a lot longer. I will not be part of any 'fight against cancer'. I don't want to 'beat this gene'. Fighting is never the way to win. (Seriously, twenty first century and we're still having to remind each other of that?) No. Not my way. This surgery is an opportunity to sacrifice in the old way; an active choice to lay on the altar of life something I hold most dear. And what do I receive in return? Isn't it obvious? My heart, closer to the surface of my being, nearer to the world around me and the future ahead of me. My fearsome, warrior heart, out there like never before.
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