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.


  1. Well said Luna,it is a truly traumatic choice you have in front of you but, lovely warrior lady that you are, you will move forward with grace and strength surrounded by love.

  2. I am sorry you are going through this, and yet on the other hand joyful for you that you have the knowledge and so can deal with it, make choices, and extend your life. I don't understand how you could look at the situation without looking through mama eyes. Aren't you a mama? I admire your strength and your unselfishness. And I agree with you about it not being a fight. "Positive" is such a good word for it, because this is a positive opportunity for life. I wish you courage and blessings for your path ahead.

  3. Lovely lady, it was so wonderful to see your update today. I know you will do what is right for you. My eldest sister died of colon cancer and the next two survived breast cancer, so far. :) I have had kidney cancer and my next eldest sister so far is fine. I have seen [as you have] how much hard work it is to stay alive. Life is so precious. Lois

  4. I just awoke from a dream where I was with a friend getting her Posistive BRCA1 result, she also has been through much loss and trauma and has yet to become a mamma. (She also does not, to my knowledge, have BRCA1 in real life!) but we sat and I tried to help her through her roller coaster of rage, tears, fears and why me's to find a place of acceptance....wishing I could do more, speaking what small truths I knew and hoping I was helping.
    I find myself awake and feeling a bit sick and worried turn to the iPad and digital media for distraction, and here you are. The very first thing I lay my eyes on. Your words exude a courage, heart and rationale and brought to mind Dorothy with Tin man, Scarecrow and Lion and the extraordinary journey home after life being pulled apart and tossed in the air by a tornedo.
    Thank you for your writings xx lots of love to you.

  5. You have a very tough decision to make, my heart goes out to you. What ever you decide your family will be by your side, and the well wishes of your blog friends too.

  6. Dear one - ugh - no, we didn't think negatively enough... your decision is intense, I get it, blessings to you. "do please write in with the reason we're not all doing this anyway" - I have thought about this a lot, and I come back with the lack of support for this path. A friend of mine was diagnosed with breast cancer years ago - it was her second tumor. She is a sound healer and self-employed. Her Dr. said she needed surgery right away. She said "give me a month", which the Dr. said was not a good idea. She and her partner went out to a remote place in the western US in a van, camped for a month, did healing work on her daily for hours, ate well, swan in rivers, hot springs, slept on the ground. When she returned for her surgery, the pre-op exrays showed NOTHING. Her Dr. said the original exrays must have been wrong, he couldn't understand how her tumor could have completely disappeared. So, I write this because I'm not sure that I would be able to up and leave for a month, even if my life depended on it. Could I? Would I? I try my best to be on the Earth as much as possible, to nourish my body and soul and stay clear of our culture's toxicity as much as possible, but my life is so entangled with stuff...

    As ever, thank you for your truth... and for sharing your depth.... and my heart is with you.

  7. Hey Lunar, I've been reading and re-reading this entry trying to think of something helpful to say, but I got nothing that doesn't sound trite or inadequate. As small and crap as it sounds I'm thinking of you and wishing you all well, your mum, yourself and Pickle. Be kind to yourself xxxx

  8. Dear Lunar. I almost left without saying anything because I simply didn't know what to say. You have been through so much already and now this. You are brave and beautiful and fierce and strong, and your lionheart makes me cry in awe. My thoughts are with you and Pickle.

  9. Oh Lunar .. I came here all chirpy and happy to tell you what an inspiration you are and so I nominated you for a Liebster Award (the details are on my blog post of 24 Sept) .. and now reading your post I'm so sad and worried for you. It just doesn't seem fair .. although I know, we all know, that life isn't meant to be fair, it just "is". I am so very in awe of you at how you live on regardless. You are loved and respected.

  10. I haven't been in this circle of friends in a while and a longer while before that. I looked you up today as I am back on. I love you Lunar. For your Light and Beauty and Strength. For the way you Love and put Love into Life. Hugs to you and Beautiful Pickle (she's not so little anymore.) Luna

  11. Ah, you good souls. Thank you. This post feels so long ago and still I am waiting to go on a waiting list. I cannot communicate my sense of urgency. And yet, here we all are. It is good to be here. One day I will return with no risk, no nightmares and no breasts - a good deal, I feel. x


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