Tuesday, 29 October 2013

Praying, But Also Railing

Pickle has been ill - a mercifully rare, but rarely merciful thing. An ear infection which spread to her throat, is all. But her body has blazed and she's been in too much pain to want to swallow, or breathe. Asleep, her breath, through the confines of her swollen throat, has been too shallow to sustain her. She wakes, gasps, chokes, cries - each of which redoubles the pain. I soothe and hold and sing and say, 'I know, I know, I'm with you.' But I'm not. Pain is a solitary place. It takes time before she can be comforted out of the crying/choking/pain cycle, but at last she sleeps and I watch as her breathing diminishes, wishing her to rest in the peace of sleep and controlling the urge to wake her so she has enough oxygen and doesn't just. stop. Which is the subtext while I go through the motions with the Calpol and eucalyptus and extra pillows. Some trigger has been switched and I drop into the old routine as if it weren't old at all. I make notes so I can report accurately what happened when. I have clothes ready - layers for the cold night and the overheated hospital, clothes in which I could do business with an authoritative and exhausted doctor. My phone and charger are within arm's reach. I curse the hurricane outside for making the air ambulance an impossibility - not that they could help before. I spend those moments when I could be asleep praying with a desperate fervour. Praying, but also railing, 'Don't you dare!' I thunder silently, feeling what maybe all mothers feel in these moments; that if need be I could and would take fate and luck and any deity you care to name by the scruff of the neck and MAKE them save my child. It is a convincing conceit at the time - a prop when one is needed - despite so many of us having tried this and come away shaking our heads, hands, hearts. Come away alone.

And then it is morning. It seems I have slept because I am woken by Pickle's frightened gasps - she has no voice at all - and I administer another dose of drug, wincing at the heat of her belly, then begin a regressed version of our morning routine so no independent effort is expected of my tired and worried girl. We each know the other is worried and we each pretend this is not the case. I will not cry until we are in separate beds again and she, catching my anxious eye, gives me a tight grin and says, 'I'm happy.' She has been giving me these smiles all night, through the fire and the pain. She has been looking after her Mama, as we all do, and it cracks a chasm in me.

I phone the doctors the minute they open - understaffed, sick leave, hurricane - eight hours until our appointment. Unless it's an emergency? I look at my girl huddled on the sofa, a glum look of tired suffering on her pale face. Her fever has broken and she has eaten a little breakfast. No, I don't think it's an emergency.

We even use a break in the weather to go shopping - jelly, ice cream, Bob the Builder magazine with plastic chainsaw, chocolate biscuits for Mama, extra credit on my phone. Then hours of waiting, snoozing, DVDs of Bagpuss, Bob, Lars the Polar Bear, all spent curled together on the sofa. She cries if I go into a different room, even for a wee or tea. We must be together today. So I have time to sit and try to order my frightened mind. Generally I fool myself that the madness of grieving has passed, but fool I am. One trigger and I am fighting flashbacks, needing to rationalise over and over why it's not very likely my girl will die in my arms like my husband did. Every time she wakes and has to sit up to breathe, I see him sitting up in the night to quell his racing heart. The harsh rasp of her infected throat is cruelly like his last breaths and always, always, I am doing all that can be done, looking like I am coping admirably. I am tireless in my efforts to save and soothe and yet. And yet I can do nothing. People just die sometimes. That, of course, is life.

The doctor is new and unconfident. She flusters a little at my record of Pickle's temperature, spends a long time feeling and peering and listening to Pickle's body. Pickle is heroic. I can tell she doesn't want to stand, is just too tired, but she stoically stands, lifts clothes, sticks out tongue, bends head, does it all again, then climbs back onto my lap, all hokey-cokey'd out, while the doctor muses aloud about hospital, but probably not necessary, but a very poorly girl. The verdict is a viral infection - just carry on doing what I'm doing and be in touch if I become worried. I gather up my girl and bundle us up against the wind and rain for the journey home - Pickle clinging grimly to the handlebars of her trike and me pushing from behind. It is not a day for pedaling. As I push and cower from the weather, I realise I am reassured by this newby-thorough doctor. She really considered what was best and decided to send us home. I can use that against my fear tonight. A doctor said.

The second night is the same but less so and by the next day we even do a little role play (I am Father Christmas, a baby, a cement mixer in turn) and Pickle can whisper without wincing. She's a little dehydrated, but the doctor said drink, so she does. We spend a lot of time intertwined still, for which I am grateful because as the fear subsides I feel how behind I have fallen with my sleep.

I think we will both sleep better tonight and I'm glad it's half term so we can be slow and easy and together for as long as we want, although my prediction is that tomorrow I'll hear 'Who can we play with today?' and 'Can I have another breakfast?' and then I'll let go of that worry and pretend to myself once again that the plot is firmly within my grasp.

And I am left with this circling my mind:


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.

Saturday, 10 August 2013

Bright blooms on a dark night

The hills are darkling and my thoughts are meandering, so tonight I will introduce you to my new postcards and let them speak for themselves.

If they take your fancy, they're for sale through my Etsy shop (the column on the right) and at Amy's Flowers, Chagford - my favourite ever florist who always seems to have some little offcut whenever Pickle comes in. Tonight Pickle is sleeping under the sedative influence of a beautiful pink gerbera bloom which needed a home :o).














Thursday, 8 August 2013

Thinking Negative

Pickle's going to be an astronaut and is quite serious about training. So far this has included eating extra green veg and walking further. I would love to find a way to include toilet training, after a bit of a relapse, but she has chosen the one profession where you really are supposed to pee in your pants. Two friends have agreed to join her, so watch this space for progress reports on our all-girl team to the moon. [At the time of publication, there is some possibility of her being a roofer instead. Either way, she's aiming high.]


I thought we'd have a spacious and relaxed summer this year, but we just can't stop having adventures. 

We've been to stay with my sister's large and wonderful family, which is an adventure in itself, and we all went to see Happy's Circus, which was brilliant. They're aimed at schools and I'll be trying to persuade Chagford School to invite them. The kids were all entranced and Pickle couldn't stop herself standing when something extra exciting happened.


With only one night to recover from that, we flew off to Jersey to see my good friend and her daughter. 

Always a fan of the budget holiday, we camped in their garden and had a lovely time.

We played in big rock pools (Pickle still not being a fan of the sea)


went rock climbing


spent a whole day at the Gerald Durrell Wildlife Park (I can't do zoos)





enjoyed the company of Uma the coral snake


went down huge slides


got genuinely lost in a maize maze


and generally had a very lovely time.


We flew home (Pickle opting to leave the plane halfway, but being talked out of it by me), washed some pants and drew breath, then off to my parents' home in sunny Somerset, where we had a ride on a proper 'woo woo' steam train



saw sheepdogs at various stages of training confuse a lot of sheep and ducks, and some amazing birds of prey, including this lannar falcon


and Pickle showed off her Forest School skills.


Meanwhile, I can now steer a car a bit, as long as I don't have to go round a corner while changing gears and have even done 70mph on the A30, then later discovered a bee in the car.

And as if that weren't stressful enough, I've got my BRCA1 gene test result this Monday. If it's positive, I think I'll have a double mastectomy as soon as possible, then my ovaries removed when I'm forty (in five years). So let's think negative :o).


Wednesday, 19 June 2013

In the palm of her hand

 I don't know how many of you folk pray, in any kind of way. I'm not sure if this counts, but I do sometimes get very clear and consciously set an intention. I did it the other day. And I did it out loud, which always makes it worse.

I've had more than a year to find my new centre of gravity after Thomas's death (So, what? I'm over it? I shock myself sometimes.) and was feeling frustrated that my work - my writing and artwork - didn't feel like it was going anywhere. Pickle's in the most lovely nursery two afternoons a week (which is a bit of a stretch for me, but she's asking for more), so I have a little more time and it felt right to, as I so foolishly said, 'move up a gear'. Enough languishing and moping! More thriving and achieving!
Pickle with her first ever packed lunch

Like all answered prayers, this soon felt like an error. A big one. I started driving lessons (locals, please contact me for times you need to stay at home), resumed this blogging lark, even wrote some poetry and generally got excited and inspired. Meanwhile, back at the ranch, Pickle has taken to waking at 5, then needing a consistent input of attention and affection all day to avoid dissolution into tears and/or fury. We've not made it through the whole day without incident for quite a while. Also, I have an appointment for a consultation about a brca1 test. For those of you who (wisely, I'd say) don't read the smallprint in the papers, this is the gene which ramps up your chances of breast and ovarian cancer and is most famously carried by Angelina Jolie. Now, if I could choose one of Angelina Jolie's genes, I can assure you it would not be that one. (Nor, if I could choose one thing to share with Julia Roberts, would it be ITP - an autoimmune disease which thins your blood.) But I missed the choosing bit, so my valiant mum has brca1 and that means there is a 50/50 chance I (and my sister and my brother) do too. Do I feel lucky, punks?*
 *Of course! Look where I live :o).
I thought I was doing quite a good job of coping with all this, but then I think a lot of things and they're frequently on the smudgier side of accurate. It turns out, every time I get a letter from the hospital, or think about all the grim options if I have this gene, I go into a kind of meltdown, which unfortunately mostly manifests as insomnia (abating shortly before Pickle wakes at 5) and  an inability to give Pickle all she needs to have a wonderful day despite her tiredness. In short, I am a less good mother, which is the last thing (other than dead) I want to be.

And it's recently been Thomas's birthday. The run-up to it was painful and stressful, but the day itself was not so bad. Pickle and I climbed the hill to sit on the Dada lump and talk about him. I finally accepted what everyone's told me all along - that Pickle no longer has conscious memories of him. Another loss for her. We took flowers from our garden which he loved and picked some also to lay on the mound which holds our friend Fay, who recently died, on the moor, as she wished.
And then it was Fathers' Day. Pickle came home from nursery with cake 'for me' in a 'Happy Fathers' Day' bag. Luckily for her, I couldn't eat it (because I'm coeliac - I no doubt share that with a rich and beautiful woman, too), so she happily gobbled it up. It was a tough day for me, but lightened by my gratitude for all the great men Pickle knows. Some of them are fathers and some not, but the important thing is she sees men being, well, men; heartful partners, loyal friends, tender parents. I think a large part of my ability to co-create the relationship I had with Thomas comes from seeing my parents' solid and openly loving relationship. I'm sorry I can't offer Pickle that, but at least she'll know a good man when she finds one.

Pickle is now wearing this T-shirt as a nightie

One consequence of talking about Thomas more has been that she is now asking some of the questions I knew would come one day. 'I won't die, will I?' 'Are we going to die on Tuesday or Sunday?' 'How old will X be when they die?' 'And Y?' 'And Z?' It's relentless some days, but what can I do, except be as honest as I can explain to her? I've said we will all die - everything dies - but we will be very, very old (older even than her great grandparents) when we die. The sharpest pang comes when she asks, 'Do mummies die?' I tell her she will be an old woman when I die and every cell sings out a prayer that I am telling her the truth, but then this gene test, which can't come soon enough, will tell me how likely that is. If you have a song in your cells, please sing my prayer. I'm far from perfect, but I'm the best this girl's got and I want to be around and healthy for a loooong time to witness her development into an amazing woman.
All that means that, rather than flourishing as planned, I'm actually struggling through a low time. But all things are relative. I'm still Mama to this wonderful girl:


I have access to the most beautiful land in excellent company (here with Suzi of Dartmoor Drums)



and for every mood there is a place where that feels just right.


AND Pickle and I have been to five parties in nine days! This is quite possibly a lifetime record.


Left, standing: Andy Letcher, sitting: David Wyatt, green jacket: Damien Hackney.

This party was a celebration of the return to Devon of Andy (above) and Nomi McLeod. That's a lot of links, but I recommend clicking on any or all of them. The talent round these parts is astonishing and increasing all the time.

So, good times and sad times all in a whirl. The most important thing for me is that, despite all her questions and having lost one of her most important people so very young, my girl can still hold death in the palm of her hand and think only of finding a soft place for a burial.

Monday, 10 June 2013

Just in case

Much has happened. Much has not happened and I am still thrumming with that loss. But much has happened and it has been good.

On the anniversary of Thomas's death, I climbed the hill behind our house, YakTrax gripping incredibly in the foot-deep snow, pack on my back and Pickle on my shoulders. It was a hard climb, but I needed to know I could still put one foot in front of the other. I needed to see myself look at an ascent too steep, too slippery, too high and feel myself too tired, too introverted, too laden. Then I needed to see myself get to the top. Because sometimes I have to make life very, very simple for myself and metaphor is so direct, as the first woman to feel her hide-skirt fill with heat from a fire would tell you.

At the top was a gathering of good souls, clustered around a fire, warming hands and faces and bellies with tea. It was so quiet in the snow that I paused at a distance, unwilling to join this little shuffling crowd. A friend from behind swept us in and there we were, Pickle now inside my coat (Thomas's coat once) and me in a swarm of words and love. We planted trees for Thomas, for all of us. Here's my dad helping Pickle plant an oak. I just can't stop myself thinking, Thomas would have loved this.


And as Pickle's birthday last year came so close on the diving heels of the funeral; so this year that juncture felt a squeeze, but not so tight I couldn't breathe.

Here's my threedom fighter delightedly receiving a Granny-knitted Gruffalo. The medicine in that smile could heal the world.


Spring came, a bit. It didn't stay long, but we had a quick dalliance with crocuses and tulips, and primroses like I have rarely seen sprouted from every crack and cranny. Pickle, ever with a stick (a genetic trait) and often with a grin, played the fey girl through the churchyard and made this day seem a little warmer than it truly was.


With spring; Easter. This is the first year I've allowed Pickle to eat all the chocolate she's been given and, of course, she loved it and has been asking ever since when it will be Easter again.


And then, when we had all given up hope and resigned ourselves to a dim and dismal year, the sun! Actual, hot, blazing, one-layer, outside, urge-to-run, bright, shit-it-burns sun! For weeks! Two weeks! I am thoroughly a better person for being shined upon so magnificently and it gave us something to do when we were in chicken pox quarantine. We're waiting for the peonies and roses, but the aquilegia and bluebells have, like the primroses, come up in storms after their long soak. Enough for lungfuls of scent. Enough to soothe this heart. And the dandelions... I have written before about the wild world of our garden. I had just got to the point, as I do each year, of feeling our dandelion lawn is really a bit of an embarrassment, a bit naughty, makes me look like I can't do it properly (do what? I don't quite know); when a flock of a dozen goldfinches and a greenfinch each landed on a stem, bending it only so slightly, and pecked at the dandelion seeds. Every day for a week they came, always with the one greenfinch, and, with apologies to those of my neighbours as keep an ordered, business-like garden, I'm now as likely to pull up those flowers as I am to pull the teeth from a lion.


I now have geek-chic braces on my teeth of which I am surprisingly fond. Pickle is delighted to have chosen the colour of my bands and I am delighted she has not chosen green. (They're a pale pink.) Every six weeks we travel by Gappy van to Torbay for The Tightening (yes - ow) and if it is a lovely day we pootle down to the sea. Pickle is still very wary of this wettest of moors and rightly unnerved by the crashing and sucking of waves, but we take a look and find small wonders for the corners of our home (which will soon be entirely spherical if we continue) and breathe the differently clear air of the ocean, and I send love back with the tide, because the girl who's read so many stories still wants him to be able to hear and can't stop saying it just in case.


Saturday, 5 January 2013

Wedding Poems

It is the anniversary of Thomas's death soon. All words are flown, and with them levity. My friends, I wish I could make possible your desire to be with me; but in this I am alone, even as I feel your love. 

For want of direction, I re-read the poems, written by me, which my good friend Sam read at our wedding. Here they are:



Poem for Thomas

I walk in to your study to tell you I love you.
You have your headphones on and your back to me.
I stand behind you and tell you anyway.
I tell you that you make my days, my life, special;
that I will try, when we have a family,
to be what a family needs me to be.
I will try to be bold when the urge to hide tugs me away.
I will try to remember that your faults are few and insignificant.
It does not matter if the milk does not return to the fridge.
It does not matter if you do not know what I told you this morning.
It does not matter if you never buy a birthday card.
It matters, more than my heart can hold,
the truth of it spilling down my cheeks and neck,
that you love me;
that you stand with me.
As I tell you all this
you nod your head to your private rhythm
because of course you know already.
The urge to kiss you is strong
but I can’t stop watching you,
wondering at you.
I tell you I think you are brilliant.
You nod harder.
I laugh.
You turn and grin.




He and I

The day is old and beautiful.
The music stopped a while ago.
He and I dance in the living room,
Dancing slow for my knees and his heart -
A lifetime of dancing and loving paying its toll.
He and I dance our forgotten dreams,
Lost hopes,
Flown children.
He and I dance as darkness falls on our shared life;
Smiling because it’s been so good
Crying because so little is left to do.
He and I keep dancing,
Keep daring to know all of each other,
Keep dancing towards death,
But all the while dancing together in life.
He and I
Old and beautiful



 Thomas on Our Honeymoon

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