I sounded so sure yesterday, didn't I? Last night long hours of fear chased me around and through and away from dreams and I find myself wobbling again. Reconstruction would mean so much more recovery and set my eventual hysterectomy back at least six months more than having a simple mastectomy. What, said my frightened mind, if I get ovarian cancer in that six months? What if I died because I didn't want to wait a few years to have foobs? What if my girl lost both her parents before she was five? How could she recover from that, ever?
And I know, I know, now that it is light (ish) and I have had a couple of coffees, that the chances are so very small... but my love is so very big and the fear changes size and shape too fast for me to keep abreast. (But not enough to stop me sneaking wordplay into otherwise serious sentences.) It is a very unmerry-go-round.
Nonetheless, it has created a wonderful thing. When I put the link to yesterday's post on Facebook, my friends started commenting with offers of help and, due to a misremembering of my blood weirdness (I have ITP which means my platelets are low), one even offered me her rhesus negative blood to have on standby while I have my surgery! Which, amazingly, prompted other people to list their blood type in case they could do the same! This has become known as Chagblood - the latest in a long, successful run of community ventures. I am overwhelmed by the generosity of my people and feel the gratitude running through my veins.
Meanwhile, my last few evenings have been spent doing this, which I recommend for stilling the mind.
Thursday, 27 February 2014
Wednesday, 26 February 2014
Pickle is four! This year she definitely wanted a proper party, which she hasn't had before. I hired the local hall and she carefully made invitations.
When the big day came, we were both slightly overexcited. I sang happy birthday at the exact minute she became four and she was very proud. Then the present-opening began.
Having failed to make a tape dispenser whistle,
Pickle had more success with her new 'binocliers'.
And then the party. In a frenzy of performance anxiety, I'd planned lots of games, but actually the children spent more time playing with balloons than anything else.
We played musical chairs (with joint winners who squeezed into the final chair together) and pass-the-parcel and then feasted. All food groups were represented: sugar, salt, jelly and fairy bread.
When they were quite stuffed, I brought out the cake. I can take no credit for this fantastic creation - it is the work of our good friend Davepops and his gang of helpers. If you're planning to be an astronaut, this is the kind of cake you want:
We sang and blew out the candles
...and then it was back to the balloons. There was a great turnout of dads, some of whom wisely lurked close to the food, some discussed dogma and humility in the context of science and religion (or something like that)...
while others took a serious beating.
Eventually we got everything cleared up, party bags distributed and friends sent smiling home. We locked the big old door with the very impressive key
and went home for more presents and a cup of tea.
I am so glad Pickle had a great birthday. Of course that's what she deserves - what all children deserve - but also I have today decided to have reconstructive surgery after my double mastectomy and that will entail some serious recovery time during which I won't be able to be with her like I normally am. A few days in hospital (still trying to cope with that idea); a couple of weeks of lifting nothing heavier than a kettle and mostly needing to rest; then many more weeks, until three months in, before I can start to live my normal life and lift my plumptious wondergirl into my arms again. Basically, a lot of sacrifice for Pickle and a lot of help needed from my family and community who I have already leaned heavily on over the last couple of years. But then hopefully I will have a body I'm happy with and can focus on creating Pickle and I a joyful future.
Monday, 10 February 2014
"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.
Monday, 9 December 2013
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.
Monday, 18 November 2013
I try to skip my eye from rosehip to holly berry to the herbs flowering valiantly against the grey. I try to accept the freshness of the wind and focus on the gaps between the rain. But perhaps I should just confess that I don't want the darkness to come. Some years the winter solstice is a cave I can crawl into; it is safety and solitude and snuggling warm with a cold nose. This year the darkening feels exhausting. Each week I am more tired and I fear it is because I need the sun. Maybe I need the sun's masculine strength, but that thought is a heavy one and doesn't help me. Maybe I am lonely inside all my many protective layers. That thought neither. Which is possibly why, in my work, I am creating sunshine :o).
This is Cherry Blossom, completed in time for The Chagford Winter Artisan Fayre, of which I am proud to be a part. It promises to be a day of warmth, levity and bright company - just exactly what I need.
And there is fun to be found even on a cold morning. Forest School is the highlight of our week. Here Emily regales us with a story of the wind and the sun while we glug hot chocolate and scoff snacks.
Later we made hogitats (hedgehog homes, for those not in the know). Pickle (whose Forest School name is Earthworm) and her lovely friend Rabbit made one together and it did look very inviting.
And we finally met Thomas's cousin, Naomi, and her dad, Bob. Pickle was impressed with Naomi's Hawkins-style communicator, but more so with Naomi's pirate boots. It was good to spend time together, although Chagford's windy lanes and unconventional shops narrowed the choice of venues. Here we are in The New Forge, Pickle clutching the bubbles set Naomi had given her.
I am not entirely in denial about the season. I have bought a fibre optic tree (don't tell Pickle - it's a surprise) and have made some of my work into seasonal cards which will be at our splendid Fayre and are also in my Etsy shop.
So, okay, although I have my Eeyore moments, I am actually quite excited about Christmas. I know it's cool to be aloof and moral about the consumerism and the excess, and for good reason, but I love finding things of happiness and knowing they're stashed away for my girl or for the other wonders who people my lucky life. For balance of sorts, I have been talking about the Philippines tornado. I told Pickle people from all over the world are sending money to help. She looked a bit sad and said, 'But I haven't got any money.' Then, much brighter, 'I can send them chocolate money for a present!' I am coming to believe that the thought really does count.
Tuesday, 5 November 2013
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:
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).
Tuesday, 29 October 2013
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: