Moments of happiness in the long time of waiting

"Mama, I wish Dada could be here just for Christmas." This, whispered in my ear at the busy table on Boxing Day, almost broke me. But this girl's Dada is not for Christmas any more than he is for life - unless you count the trees he is growing into, which we do. Despite this one rip of the heart muscle, Christmas was much less painful than last year. At one point, humouring my mum by joining in a stupid flute-tooting game, I laughed so much I had to reel back from the edge of hysteria - the kids don't need to see that. Pickle had lots of fun with her grandparents and cousins and could barely keep her eyes open for her bedtime story.

And far away a small boy had his very own name on his bedroom wall - a complex commission involving much research into sword design, which was unexpectedly fascinating:

The flowers each represent a member of his family - a really lovely addition and a fun contrast to the weaponry.

In January I finally saw my mastectomy surgeon, expecting to be 'allowed' to make a decision about surgery and be put on the waiting list. But no. What I got was a physical examination which, because my wonderful friend, neighbour and brewer-of-healing-tea was there, caused giggling rather than trauma. The surgeon was checking whether I had sufficient 'resource' (my new favourite word for fat) to create foobs (fake boobs) with my own flesh. Stomach: "There's nothing there," he said. Yes! Feeling smug, I turned around and he started kneading my back (when did it last get a really good scrub, I wondered). "Oh yes, we could make you a good pair out of this." What? How do I have so much more back than belly fat? Is that normal? At this point I'm topless (I'm discounting the preposterous 'cape' which only highlighted the nudity underneath) and he mentioned the possibility of using buttock fat. "Oh, she doesn't have a bum," said my friend, thus saving me getting my trousers off and earning herself extra Kettle Chips. Then clothes on for the statistics and the discovery that I can't be put on the waiting list until I've seen a clinical psychologist who, if she's worth her salt (? I don't know - my Nana used to say it), will diagnose me with chronic stress caused by waiting for surgery. But then I go to my online BRCA forum to complain about how looong this takes and there's people on there who can't have the surgery at all or are considering mortgaging their family home because their insurance doesn't cover this. And I remember how desperately grateful I am for the NHS which gave my husband 30 more years than he would have had, rescued me when I ran out of platelets and housed us both so we could be with Pickle while they helped her through her first 3 weeks. I'm still spending some of my nights running scenarios where I don't have the surgery quick enough and Pickle's orphaned at 4, but mostly I'm just trying to trust it will turn out okay and distract myself with other things.

Like hunting down every clothes moth and its spawn in my house. Grrrr. I'm coming to get you, you beautiful flutters of dust and writhing hole-makers. I've got cedar oil and I'm not afraid to use it.

And life modelling. Tomorrow will be my first time for years and I'm quite looking forward to it, if we can get the room warm enough. I went last week to draw and although most of what I produced made me cringe, theree was something which pleased me about this one:

And looking after Pickle, who's recovering from Slapped Cheek (not 'a slapped cheek' - please don't write in). Here she is, snuggled up with Bill, Thomas's dad:

Looking at this photo I am reminded again how grateful I am to all the good men and heartful fathers in Pickle's life. You give her something I can't and I just don't have enough thanks for that.

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.