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.

Success and Failure

Our Winter Fayre was a success. We all shuffled in early to unfurl curtains and blankets across Formica tables, tak ivy to the magnolia walls and display our wares. These photos do none of us justice, but were the best I could manage between customers, on a camera which needed me to rub its batteries on my thighs between shots - real girl power :o).

I was ensconced in the corner with my neighbour who makes strikingly patterned pottery. We normally snatch at conversation as we scuttle past one another, so it was lovely to have a whole day together and we spent a lot of it laughing.

Another neighbour, Damien Hackney of Oakleaf Jewellery, was there too (we are a crafty street).

Nomi sold her amazing artwork and jewellery and the music of Telling the Bees which cheered us all more than the usual Christmas jingles.

Danielle Barlow, who organised the fayre, sold her ever-popular cards, prints and original work.

Rima was there with her traveling Hermitage, selling wonders as ever, with the new and powerful lure (I succumbed) of a Rima Staines calendar.

And there were more, who escaped my dodgy photography when even the power of a maiden's thighs was not enough to recharge the batteries. Iah of Ecofreq sold tempting fabric cuffs and adornments; Sara sold handmade funky bags and books; Sonny of The Healing Hedgerow sold potions and lotions to cure and soothe (and washable sanitary towels which one lady mistook for spectacle cases) and Danielle's entire family plied us all with drinks and stollen. We all agreed we'd do it again next year :o).

Meanwhile, back at the ranch, Pickle and I have been struggling. I had thought (in a fit of self-ignorance) that waiting for my surgery would teach me patience. Nope. Instead, I am learning how astonishingly deep my impatience goes. I have a consultation with a surgeon in January, but then it could be months before I get a surgery date. Also, a referral for an MRI but no word of that yet.

So, I am stressed and needing a bit of space to collect myself. Pickle, feeling me retreat slightly, clings on tight. Which leaves me feeling I have less space than before. She wants to reduce her nursery afternoons from 3 to 1 (I've booked 2 in case she changes her mind) and move her bed into my room. I've resolved to spend as long as it takes to sing her to sleep and just go to bed earlier and earlier if she spends all night in with me, scrabbling about and asking if it's morning yet. But the beds stay where they are. (For now.) I'm finding ways to be close with Pickle, to play uninterrupted by such inconsequential irritants as laundry and cooking. It's hard - often I'd rather read the paper or have a nap, or just wash up with enough quiet to think. Failing my girl is the thing which will tip me over the edge faster than anything else. I realised I was halfway down the cliff and called for help. She got ill. A very long night of vomiting (in my bed EVERY time!) for her and laundry for me. By the morning we were both ragged. The washing machine, laundry basket and bath were all full. Everything was cancelled. We were in quarantine and could do nothing but be together. It helped and she healed from her first advent chocolate breakfast. I am back at the top again, leaning dangerously, but still grasping tufts of seagrass with my toes. I don't know which way I'll tip, but I'll keep doing what I can to find safe ground for us both in the storms ahead. Last Christmas was tough. I'm hoping this one will be easier, but this second year hasn't been easier in general. January waits to pounce with the anniversary of Thomas dying and February with Valentine's Day and Pickle's birthday, which is a joy and a wounding because he should be there, at least on her special day. And then March and the rebalancing of the light and, I pray, my mind. Let's hope we're all still standing on the other side.

An Exhibition and Talk of Marriage

We have reversed roles. Pickle is now well enough to gambol off to nursery and I am increasingly ragged of nostril and lung - not a pretty sight. A friend has brought a jar of mountain sage to brew on the hob for a few days and hopefully enable me to talk again.

But enough of such gloomy talk. Shall we have a happy post for once? Yes, let's.

Here is a whistlestop tour of the fun we've been having of late:

We've spent time with Pickle's special hound-friend, looking at the world through tinted lenses

playing Red Riding Hood

 

but we all know how that story ends

and that the danger is really from these beautiful ingrates.

We have been finding secret ways,

managing the elements,

 being amazed by autumn abundance

and wondering why the ponies don't want to talk to our horse, even when he talks to them.

Meanwhile, Pickle's beloved Gappy has been very poorly and my mum has has her double mastectomy. Mum's home after only one night in hospital and doing fine - in fact, she's quite typically mostly concerned about myself and Gappy.

And back at the ranch, I am having a little exhibition in The Courtyard throughout November.

Rex of Barleycorn fame arrived just as I was starting to hang my work (in my straightforward hammer-and-nail style), bearing fancy picture hanging wires, which worked fine on the framed pieces, but the originals (on the right wall) were too light, so I did get to do some banging. And the lovely Rima of Hermitage fame came to lend a hand and assure me it was all fine and I could stop and drink my coffee.

The three larger originals are new, so they warrant a solo moment each.

Large Flower Meadow:

Tulip Field:

Meadow Hill:

There's also the perpetual calendars drawn by the late, great Thomas, all my postcards, unframed versions of the framed prints and some new seasonal cards. The Courtyard is a lovely place to be, but if you find yourself far from Devon, you can hop across to my blossoming Etsy shop, where I may or may not be serving cake.

And if all THAT isn't cheering enough, then let me share an especially happy moment with you.

PICKLE: Mama, when can I get married? [This from nothing - we were reading about a dog!]

ME: Well, you can marry when you're sixteen, but you might want to wait longer or not marry at all. You can only marry one person, so you need to choose very carefully.

PICKLE: I know who I'm going to marry when I'm sixteen.

ME: Who's that? [Connor, Noah, Erick, Reuben?]

PICKLE: I'm going to marry you Mama.

Reader, I cried. And I didn't contradict her. This proposal may only be my second favourite because the first had the advantage of chips. And a cuckoo, who still calls in the long hot days.

But those days are gone, so now for another fat mug of mountain sage and honey - this stuff's good :o).

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.