Have tenderness for your scars

Last night my mum and I drove a five-hour round trip for an arts event about breast cancer and preventive surgery. It reminded me of the crazy flight I took to London on a whim to a surgical stitching event (which I wrote about here). I did wonder, as I gagged down a lukewarm Nescafe in Woody's Diner to keep me awake, if I was right to venture out on such a night. Some roads were still flooded after the week's violent weather, and the A30 was terribly dark. I had visions of my little Skoda careering off the road. We arrived in Exeter safely, however. We crept into the lecture theatre to hear the poet Clare Best reading already: "one last walk with breasts/the weight of them familiar as my own name and address." 

Clare was the only female in two generations of her maternal family not to have contracted breast cancer, and she decided to undergo preventive surgery without reconstruction. Janet Reibstein was also in the room; she made the decision to have surgery after losing two aunts and her mother to the disease. I sat at the back of the room, thinking of my own history, acutely aware of my fake breast. Three women; three entirely different choices. Clare chose to embrace the idea of a flat chest. Janet had reconstruction, entailing several surgeries, using silicone implants. For my part, I had my breast replaced with my back muscle. What other stories were hidden beneath the clothes of the people in the room?

I wish now that I'd bought Clare's full book, Excisions, although I'm glad I picked up Breastless, a smaller publication specific to her surgery. I want to quote from a poem about Saint Agatha, whose breasts were cut off when she refused to renounce her Christianity, but it's not in my pamphlet. I did write some notes, although please forgive me, Clare, if I'm butchering your words. Saint Agatha is often portrayed carrying her breasts in a dish: "We all have severed parts, carried separately.  Have tenderness for your scars." Yes! To me, this is the essence of what we were shown last night. Clare is cultivating tenderness and acceptance and passing that on to the wider world, no matter the shape, the size or the source of our scars — or the choices we've made. 

Self Portrait Without Breasts

I am going to see a poet, Clare Best, tonight. She is reading from her book of poems, Excisions, nominated for the Seamus Heaney prize. Clare has breast cancer in her family, and five years ago she underwent a preventative double mastectomy without reconstruction. The photographer Laura Stevens recorded Clare's experience in exquisite detail. I found a short video of Clare's work, Self Portrait Without Breasts, here. It is hard-hitting and beautiful. There is an alternative to reconstruction: letting the mastectomy be. Clare describes her 10 year old son walking in on her looking at herself post-surgery. He tells her: "you're even more beautiful now." 

Staying Alive

I am meeting psychologist Janet Reibstein in a few weeks — she is the author of Staying Alive, a memoir about breast cancer in America spanning 50 years — and she has agreed to be interviewed for my book. I'm thrilled. She is the first of several women I hope to interview about the experience of breast cancer in families and across generations.

Janet's book tells the story of three sisters - Janet's mother Regina, her aunts Mary and Fannie - and Janet herself. The three sisters, born in America to Polish immigrants, grew up in the pre-war depression era in a town called Paterson in New Jersey. All three sisters were diagnosed with breast cancer as young women. "Fannie died first, a young mother of three, followed by Mary... Regina struggled against her recurrent cancer until she was sixty-four, but inevitably followed her sisters." Janet decided to have preventive surgery — a double mastectomy — at a time when prophylactic surgery was still emerging. The intimacy of the telling, and the richly described cultural and historical backdrop in the book, provide invaluable insights into how people coped — and still cope — with breast cancer and the fear of it.

When I told Janet about my book, Mermaids and Monsters, she wrote this in her email: "I am really pleased to hear about your book and think it will make an important contribution -- for so many women, worldwide. One of the most gratifying things about writing Staying Alive was the response from women around the world who had read it and for whom it had made a difference, or who called on me for information or validation." I found this very humbling. It also fired me up again at a time when progress has been slow. I must keep writing, I tell myself, despite the commitments that often take me away from it, and the difficult emotions that sometimes make writing a struggle.

Thank you, Janet.

Made for Life: from Frankenstein to pin-up

The Made for Life calendar is officially out — and you can buy it here. The funds are used to help support people with cancer by offering spa days, workshops and get-togethers that inspire wellbeing. Being in the calendar itself has been a form of support, and one that I did not expect.

I have written about feeling "like Frankenstein's monster" during my own recovery, and when I think about that and look at my calendar page (November), it underscores how much has changed. After I bought the calendar, I went through my photo archives trying to find pictures of myself after surgery. In one photo, I'm pale and wan and I am still wearing my drain under my clothes, but I've accessorised my orange fabric drain bag with a sparkly blue brooch and I have a manic grin on my face. Another is a horrific photograph of my reconstructed breast when it developed necrosis (tissue death), and a golf-ball of black tissue had to be cut out. There's no way to put a positive spin on that one.

I've been watching Facebook as fellow Mermaids and breast cancer patients write about how they felt being in the calendar. One friend wrote: "thanks to Made for Life and to Mark at Face Photography for helping me to 'like' myself again." I know what she means as I look through my photos — my 'before' and 'after' shots. What I notice most in my calendar pic is the calm and self-assured expression. No desperate grin in sight.

Pink ribbons and Cornish flags: Made for Life 2013

Tomorrow I am going to the Made for Life ball, a fundraiser for Amanda Barlow's splendid charity that supports people with cancer in Cornwall, and I am going to help launch the naked calendar. Because I am in it. Cripes! I only agreed to do it if the photographer would "take me from behind" (it was a slip of the tongue you understand); I decided I'd be happy to show my back scar, of which I'm rather proud.

The scar on my back comes from the reconstruction surgery - my left breast is made of back muscle, the latissimus dorsi. Once angry and swollen, it had refused to heal for months before settling down into a defiant pink sinewy line. But when I was in the studio this summer, the scar had all but disappeared as far as the camera was concerned. We had to make a plan B. Now, as I look at this preview of the calendar — which appeared on the "Cornwall's Coolest" website yesterday — the scars are indiscernible to the viewer, but I know they are there for every single one of us. They're there just as surely as the pink silk ribbon of breast cancer flutters and cuts unmistakeably across the images. This calendar is not just a call for awareness — it is a salute to the scars.

The Made for Life 2013 calendar, with photographs by Mark Walker of Face Photography, costs £7.50 and is on sale through the Spiezia Organics website from October 1st. The website also has full details of the Made for Life Foundation.

Mermaids and Monsters: the jacket

I've had loads of fun today playing with words and images and making a prototype cover for my book. A budding friend, artist and writer Felicity Notley let me use a photo she took of a magical pond in Croatia. The illustration is by Harry Clarke (1889 - 1931) who illustrated the Little Mermaid for an edition of Hans Christian Andersen fairytales. 

I liked the result so much that I printed off a few copies and wrapped them around existing books. Feels like I just got published. A bit cart and horse, but still lovely. Hey ho. Back to writing!

Roll up! Roll up! Come and be entertained at Port Eliot!

If you've never heard of the Port Eliot festival, it's a bohemian free-for-all that Jarvis Cocker calls "a festival of ideas" and Hanif Kureishi says is "a sort of upmarket pop festival". It combines film and literary talks, music gigs, wild swimming, flower shows, comedy, fashion and best of all for our family, magical stuff for children ("Imagine a place where you can dance with trolls, take tea with a giant, make mischief with the pixies and knit dreams with a faerie." Note the use of the word faeries: no ordinary fairies here!) Port Eliot brings you together with such people as Rosie Boycott, Stephen Frears, Kate Summerscale and Suggs in one giant, weekend-long party. I love it. This year, it takes place in the grounds of the Port Eliot estate in Cornwall from July 19-22.

Yesterday I received some information about a brief reading stint I'm doing at the festival with fellow alumni and writing students from Falmouth's Profwriting MA. Usually, the profwriting tent is awkwardly placed on a muddy hill, but it appears we have been upgraded. Profwriting has a couple of one-hour slots in the Round Room in the house. No humble corner for us this year. The glittering room was designed by Sir John Soane and features a priceless mural painted by Robert Lenckiewicz. Woah!

The profwriting peeps are planning to present a variety of work, giving all the readers a five to ten minute slot each. They have picked a tongue-in-cheek circus theme, billing our show as the top attraction. I was asked if I could think of a few lighthearted and funny taglines about my piece to add to the poster. I'll be reading alongside The Man Who Hates Google and The UK's Worst Stand Up. It's always a nervewracking experience, reading (this is me doing it last year, fingering my wellies for comfort). But, well, my book is about breast cancer surgery, and to think of something lighthearted or funny and circusy to sell my work was at first blush a bit of a challenge.

It's not that there is nothing lighthearted in my book; there is a lot of humour because, let's face it, no-one wants to get depressed for the fun of it. I just wasn't sure how to present my work in a circus context. But the book is about Mermaids and Monsters after all, and when my sister said "hey, what about being the freak show?" that was it. An idea popped into my head. So, festival lovers, Roll up! Roll up! Come one! Come all! Visit Port Eliot and prepare to be amazed. Come and meet a Real Live Mermaid! She Speaks! She Laughs! Yes, you heard it here first, folks! The profwriting show is going to be the greatest show on earth!

The Diving-Bell & the Butterfly

Like most writers, I've recently experienced the classic writer's block. After I got my MA results in March, the momentum petered out. It's not that the results were bad — quite the opposite; it was the enormity of the responsibility to write well that made me feel afraid. One of the most humbling comments I've ever received about my work came from my MA examiner. She said: "For me, the way in which you relay your personal story of breast cancer is as powerful and moving as the likes of Jean Dominique Bauby's The Diving Bell and The Butterfly." The comment almost made me splutter out my marmite on toast and my bangers and mash from the night before. 

I had never read the book, but I have it on my bookshelf. I knew only that it was a powerful and well-written story, and that I needed to own it and read it one day. I remember my friend Emily reading it years ago and it was because she loved it so much that, when I saw it sitting in a random Help for Heroes fundraiser in my newsagents, I had to buy it. Yesterday I finally picked it up to try and unpick what the examiner meant. It was an especially poignant decision to start reading it now. Not so much because of that comment. Because one of the mums at my daughters' school has just had a stroke. She is in her mid-thirties.

Jean-Dominique Bauby survived a devastating stroke but spent the remainder of his life in hospital with locked-in syndrome. Before the stroke, he had been the editor of French Elle. After the stroke, he was paralysed, with the exception that he could swivel his head ninety degrees and blink his left eyelid. He used his eyelid to dictate his book one letter at a time: Claude Mendibil, a specialist nurse, would point to letters on a screen and Bauby would blink once for yes, twice for no. Bauby describes the deadweight of his condition with little self-pity, and he shows how his extraordinary mind takes flight like a butterfly and provides him with respite. And sometimes, even, joy.

My favourite chapter so far is about the Empress Eugenie, the hospital's patroness. In his mind, he befriends her, follows her, is even caressed by her: "I followed her hat with its yellow ribbons, her silk parasol, and the scent of her passage, imbued with the eau de Cologne of the court perfumer...She ran her fingers through my hair and said gently, 'There there, my child, you must be very patient,' in a Spanish accent very like the neurologist's." I love how he mingles his fantasy with reality: the voice of his doctor invades his flights of fancy and brings him back to the unequivocal truth. 

He catches sight of himself in the middle of a reverie with Eugenie one day: "Reflected in the glass I saw the head of a man who seemed to have emerged from a vat of formaldehyde. His mouth was twisted, his nose damaged, his hair tousled, his gaze full of fear." Instead of weeping inside, the moment is euphoric: "Not only was I exiled, paralysed, mute, half deaf, deprived of all pleasures and reduced to a jellyfish existence, but I was also horrible to behold. There comes a time when the heaping-up of calamities brings an uncontrollable nervous laughter - when, after a final blow from fate, we decide to treat it all as a joke. My jovial cackling at first disconcerted Eugenie, until she herself was infected by mirth. We laughed until we cried."

It is the laughter that is inspiring, this honest humour. This is what I need to hold on to in my writing. What on earth am I afraid of when I look at the blank page, the white screen, the dark cave of memory? How ridiculous to worry about what to write when the extraordinary Bauby managed to write a beautiful book by blinking an eye; when a mother of two young boys is learning to walk and talk again; when the heroes we fundraise for have terrible injuries to live with and struggle to cope with the aftermath of bloody conflict. Writer's block just seems stupid. I will keep The Diving-Bell and the Butterfly on my desk and remember Bauby when I'm stuck in the quagmire of my own woes. I will conjure up my own butterflies and take refuge in the imagination. Honestly, what a book! I urge you to read it.

How to find the juicy red wort

A quick note to tell you that I searched online for images of St. John's wort, or hypericum perforatum, so that I can recognise the plant in the woods. Most of the pictures I found showed bright yellow flowers, not red. I wondered where the "juicy red" reference in the fifteenth-century poem (see post below) came from. Another quick google, and it appears St. John's wort flowers have red buds and seed-heads. When crushed, the flowers leave blood-red "juice" behind. Just in case you want to make a magic necklace of your own, like I do, to rub all over your lintel for luck.

Source: Donegal-Wildlife.Blogspot.co.uk

St. John's wort: works like a charm?

Slightly weird, but nice: my doctor just congratulated me for deciding to wean myself off anti-depressants in favour of an experiment with St. John's wort. I don't disagree that I need a little help to stay on an even keel; I just would rather it was herbal than chemical, natural rather than man-made. It's the fear of carcinogenesis, that I might be creating or feeding cancer, that has driven the decision. Being diagnosed with early breast cancer has made me think about everything I ingest, put on my skin and use around the house. Quite honestly, it can drive you nuts. I try and be balanced about it. I've never had a problem with taking my prozac because I believe it saved my life: when my daughter died in 2001, I really didn't think I'd be able to keep going. I'm in a good place now though, and so I'm going to give the traditional remedy a try. I love the history and the magic associated with St. John's Wort; that in itself is enough to buoy the mood. I found this poem about St. John's wort online: it apparently comes from a manuscript dating from 1400.

St. John’s wort doth charm all witches away
If gathered at midnight on the saint’s holy day
Any devils and witches have no power to harm
Those that gather the plant for a charm:
Rub the lintels and post with that red juicy flower
No thunder nor tempest will then have the power
To hurt or hinder your houses: and bind
Round your neck a charm of similar kind. 

I don't talk about depression much because it is still so hard to explain and I've got enough on my hands dealing with breast cancer taboos. But I feel I am doing an injustice to the condition by keeping my own depression quiet. Lately I've been called "inspiring" because of the work I've been doing to understand breast cancer surgery, but when it comes down to it, all that research, writing and talking about it is simply about helping me cope. I need to keep the monstrous "black dog" of depression at bay, and I strive to thwart the thunder and the tempests that occasionally roll in. I don't know if that's inspiring so much as surviving. Having read that poem, and knowing that the herb is rife around the British Isles, I might have to put on a cape, pick up my basket and go find some of those juicy red flowers. The time is right; 24th June is the holy day in the poem - it refers to St. John the Baptist's birthday. I think I'm going to make myself a St. John's wort necklace and rub it all over the lintel. 

(Afterthought: This is a picture I took at the Old Operating Theatre and Herb Garret in London Bridge, where I'm pretty sure the ancient apothecaries would have doled out St. John's wort, among other things, to the patients at St. Thomas. This is actually a fascinating display about the story of aspirin, the chief component of which is derived from plants like willow, myrtle and meadowsweet.)

The Cut and the Cure: the movie!

The Cut and the Cure is now on YouTube! It's a fifteen-minute documentary about my research into breast cancer surgery by James Williams, a final-year student studying film production at Bournemouth University. James came to me a while back, wanting to make a film about breast cancer because it's close to his heart: his family has experienced it first-hand. I've become very fond of James. He's sensitive, intelligent, funny and good-hearted. It's pretty unusual for someone so young to tackle such a difficult subject, but James is not an average student. He lost his father, suddenly, within days of our filming. He knows what loss looks and feels like.

There are two things about the film I have been chewing over. I've been struggling with the placement of graphic surgical imagery so close to the front of the film. I worry that this imagery will have people switching off and missing a central message, which is that viewing surgery as art, as something strangely beautiful, helped me come to terms with going through it. I must accept, however, that this is James's film, not mine. I can use my writing to make surgery accessible; I can imagine the different responses and play with my words accordingly, coaxing people in. When I write, I'm in control. But this is James's film, and I have to relinquish control. I've been holding on to this film, not sure how to share it. Now, I think, I can let it go.

The other thing I want to share is this. A friend and fellow DCIS patient pointed out to me that the way the film is edited makes a case for reconstruction being the "only" way you can feel whole after mastectomy. I don't feel this way at all. I don't wish to strong-arm anybody into having reconstruction. It was right for me; for others, it isn't. Having the choice is what matters. I know that many of the women at the Mermaid Centre who had mastectomies ten, twenty years ago didn't feel the need for reconstruction — and still don't. They have found their own ways to live with their surgeries. I love the story my old friend in upstate New York told me when I first got diagnosed: "Years ago, my grandma made herself a prosthesis after her surgery. She used it as a pin cushion. She used to stick needles and pins in the front of her dress without thinking while she was sewing. It was kind of a shock when she answered the front door..."

So here it is: James's film, The Cut and the Cure. You may or may not find surgery beautiful, but here's to looking something difficult straight in the eye.

"I've got balance!"

What beautiful weather we've been having this week! I went to Castle Beach yesterday with my children after school and we scoffed strawberries so fast there was no time for the sand to ruin them. Lola and I went for a walk across the rockpools while Daisy clambered further up the beach with her friends. After a few minutes pointing out the red enemies (or anemones, as you wish), Lola stretched her arms out like a gymnast. "Look mum," she said, "I've got balance and I'm not going to fall over. Watch!" She hopped over the green and black seaweed-covered rocks, stopping every now and then to repeat "look at my balance!"

Though I was partly watching through my hands, hating the idea of her falling, I realised I was following her with no fear for myself at all. It was quite a contrast from the way I'd felt about those rocks two years ago, when I was recovering from my mastectomy and reconstruction. We'd gone rockpooling, and it was my husband who followed the children skipping over the rocks. I was so petrified that I stood well back on the firm sand and watched, wringing my hands. I was afraid I would deepen the slow-healing wound on my back and ravage the webbed, puckered scar in the front.

Everything I did (or didn't do) revolved around fear at that time. I couldn't bring myself to step among the rock pools, and neither could I pick up my children, carry the shopping, or bend over the bath and wash my own hair. I couldn't trust in my balance at all. I'd spent months dealing with surgical wounds and scars that wouldn't bloody heal. I was petrified that my body would split open again if I so much as looked at a rock. Now, I realise, I've reached a point where I've healed, my body is whole again, and I'm only as frail as anybody else out on the rocks. There is no extreme wound to pinpoint or analyse or worry about. If I slip, so what? Like Lola says. I've got balance, and I'm not going to fall over. So there.

Embarrassing Bodies: "tits out for the nation"

Last night, Channel 4 screened the first episode of their new series, Embarrassing Bodies: Live from the Clinic. A few hours beforehand, a group of women from Cornwall, Mermaid Centre patients past and present, had been tweeting about their journey to Birmingham, where they were going to take part in the show: "we're off to get our tits out for the nation!", "on minibus drinking champagne", "in the green room - no turning back now!" The programme began, and after a brief interlude involving hernias, bums and penises on Skype — the programme invited viewers to call in with their health problems — suddenly there they were. The Mermaids got their breasts out for the nation to show how to look for signs of breast cancer. Viewers at home were invited to follow along, and several were on Skype, interacting with the studio as they looked for unusual lumps, bumps, puckering and creases.

The Mermaids have all been part of a calendar project to raise awareness and funds for a Cornish charity, Made for Life, which supports women with breast cancer, and were quite used to being photographed. But it takes a lot of guts to get your kit off on television in front of millions of strangers. Many of them had already been through surgery, radiotherapy or chemotherapy; one Mermaid was still in the middle of her chemo. They paid tribute to our friend Malina, who died at only 32 in March; her calendar image flashed up on screen: she's enveloping her three-year old son with her whole body, and even in black and white she looks impossibly radiant. 

Back in the studio, the Mermaids' scars were apparent: I could see the bilateral mastectomy with soaring, arc-shaped scars; origami nipples, cleverly constructed out of skin from the back; perfectly colour-matched areola tattoos. Despite the evidence of all they've been through and all that they've seen, they still have hope. All of us felt very proud of our friends who stood up for something they believe in: they did it because if they manage to get just one person to find a lump early, they may well save a life.

The Voice

I'm not going to be talking about Jessie J, Tom Jones or swivelling chairs in this post (there might be a picture though). I've just started to record the voiceover script for the documentary about me and my book on breast cancer surgery, Mermaids and Monsters.

Filming and voice-recording are so different from writing about one's experience. When I write, it's just me having a conversation with myself and I'm very comfortable with that. I don't mind sharing the fruits of that conversation with all the world, on this blog or in my book. I'll tell you anything. But speaking those inner thoughts out loud and talking into the microphone raises the stakes substantially. So does the idea of putting this film on YouTube. It's not nearly as private a process, and as I listen to myself I cringe. South London sloppiness! I'm the female Jonathan Woss! There can't be many people who like the sound of their own voice. It also feels weird because I'm reading the director James's words, and even though his voiceover script is based on things I've said or written, the words don't feel like they belong to me.

Doing the voiceover doesn't come easy, and as I play the recording of part one back I can think of all sorts of changes I would like to make. But that's James's job, so I dutifully read his script the way he wants it, and then I read the script my way so I don't feel like I'm being told what to say. That feels better. I relax even further when I remember how multi-dimensional the film is and how many other voices are involved. Historians, archivists, my surgeon, the breast care nurse, other patients past and present are all an integral part of the final cut. I feel a surge of relief and confidence, and I swing around on my chair, Jessie J style in my leopard print dressing gown, ready to record part two.

Jessie J. 

My dressing gown.

The Final Chapter

I wrote the final chapter of my book today. In my head, at least. I went to the hospital in Hayle to have my reconstruction finished with a tattoo, and it brought a satisfying feeling of closure. It was also poignant, because the last time I went to Hayle it was to say goodbye to my friend Malina, a fellow breast cancer patient. She had been in St. Julia's Hospice, which is directly opposite the hospital entrance. Malina died in March; she was only 32. As I walked past St. Julia's and into the hospital, Malina was by my side. It was hard to be there with my luck, knowing how cruel hers had been.

I waited for Sarah, one of the Mermaid's breast care nurses, to collect me from the waiting room. I watched as familiar faces came and went along the corridor: there was the jolly porter who'd wheeled me down to the operating theatre for surgery, still chipper and smiling at everyone. And there was the other porter I knew, the one who DJs and loves Shakin' Stevens. I saw an advert for one of his discos in a pub window yesterday. Through the double doors behind me were the sterile blue operating theatres, where I've been both patient and observer. So many stories have been played out behind those doors. The stairwell echoed as I followed Sarah to the clinic rooms.

Sarah laughed when I told her how glad I was to be there. I took her a copy of the blog post I wrote about the Blush and the Bounty and gave her a bottle of rosé (I had looked for blush, but no luck). We lined up the bottles of tattoo ink and I took photos of her holding the wine. I undid my gown and Sarah began tattooing, noting with wonder the areas of sensitivity in my new breast. 

When I was inked and dressed, she gave me my discharge form. I walked out of the clinic and into the rain and said goodbye once more to Malina. I remembered a line from a book about Buddhism by Sylvia Boorstein. "We don't get a choice about what hand we are dealt in this life. The only choice we have is our attitude about the cards we hold and the finesse with which we play our hand." Malina managed to play hers so well with so little time, I thought; I am going to try and do the same. And then I walked to the car.

The Blush and the Bounty

Today a brown envelope plopped through my letterbox. I've been waiting for an appointment to have my breast tattoo touched up. This is a big moment as far as my reconstruction is concerned: it is the grand flourish, the embonpoint, if you will. For a true finishing touch, the pigments for nipples rival some of the best nail varnish names you can get. My nurse tattooist combined Diamond Blush with Burgundy Bounty when I had my first round of colouring. It was more uncomfortable than I expected: a good thing, because it meant that nerves had grown into the breast skin from my back muscle (I don't have implants). I have sensation there. My breast feels real.

After the initial tattoo in June 2011, the breast care nurse told me to wait for a few months to let the colour and the shape sink in: "it might take a few goes," she said. It's a fine art this, matching a fake nipple and areola complex with the original. Just now, after picking the envelope up off the mat, I wrote the appointment on my calendar (30th April). I might as well have been writing down an appointment for a manicure. This is a mark of how far I have come. I once felt like Frankenstein's monster: awkward, ugly, stitched-up. Today I feel like I've got myself back. My only question is whether the nurse will go for more Blush or more Bounty. I think I am going to take her a drink.

Sum Thinking

This week I went to the London Book Fair in Earl's Court to see and learn what publishers care about. I think publishers might take my book more seriously if I know something about their world and how to operate in it. But at times the fair is crowded and stuffy. It makes me feel intimidated and slightly insane. Nearby is a beautiful cemetery in Old Brompton Road, with heart-swelling architecture, old trees and swathes of spring flowers. The cemetery is a respite from taking my writer-self too seriously. You can walk down the long, straight, boulevard-style paths or you can follow labyrinthine trails that wind around the gravestones and tombs.

I went to the cemetery with a conversation I'd had earlier at the book fair on my mind. My friend Jakki has a short story on the wall in her office by David Eagleman. She says it's about someone who meets all their better or more successful selves after they die. They are the selves who achieved all the things you might have hankered for but didn't get, for whatever reason. I can't really do the book justice because I haven't read it and I am making it sound cheesy, god forbid. It made me think of another book I noticed at the book fair, Fuck It Therapy, by John Parkin. Pretty self-explanatory. Being in the cemetery was a reminder that we only get one crack at this life. We might as well aim high. Instead of feeling daunted by all the publishing mania at the fair, I went back to it in a buoyant mood. Then I ordered David Eagleman's book: Sum.

Pain control

On Easter Sunday, my brother-in-law and I supported my sister as she gave birth at Pembury hospital in Kent. Until recently it was a depressing and foreboding huddle of Victorian institutionalism — it was originally built as a workhouse — but it is now a £225 million state-of-the-art ode to modern medicine. My sister had planned to take advantage of all that modern medicine had to offer, but she was forced to forego her planned epidural due to the speed of labour and the midwife's reluctance to medicate. It was traumatizing for her. I know that pain; I've given birth without drugs too, but I made a conscious decision to do so and it was that decision that enabled me to cope.


I found my sister's distress profoundly upsetting. The heat, sweat and anguish were palpable, and the delivery room claustrophobic. Though we were trying to encourage her, comfort her and hold her, it felt like we were trying to pin her down against her will. It made me think of Fanny Burney, a woman I am writing about in my book about the history of surgery, who had a mastectomy in 1811 with no pain relief; seven men in black held her down as the knife went in. There was no comforting presence to help Fanny Burney through her ordeal.


Hundreds of years ago we expected and witnessed pain on a regular basis, and not just in childbirth. I thought of paintings and drawings of surgery pre-1846, when anaesthesia was invented. The patients are being held down by multiple attendants, and their facial expressions are maniacal; some are struggling and trying to run away. Fanny Burney describes closing her eyes in horror during her 1811 mastectomy; you can smell the fear of death in her account.


In the delivery room, my sister had a terrified expression on her face and closed her eyes and roared to get through the pain. I thought I was going to faint so I sat on the sterile blue rocking chair behind my hardier brother-in-law. I stared under the bed at my sister's Josef Seibel shoes ("The European Comfort Shoe", I noted). The midwife kicked my sister's shoes towards me as they took the bed apart and put my sister's feet in stirrups. After a half-hour of serious pushing and an episiotomy the baby's head appeared, glistening with dark-gold hair. The extraordinary result - a boy! - came tumbling out into the world.

While my sister's experience was childbirth and Fanny Burney's surgery was a different case entirely, I got the closest glimpse I think I will ever get of what it would be like to endure surgery without pain relief. I'd not been at all worried about seeing anything bloody or unsightly during childbirth. I've stood in the operating theatre and watched my surgeon carry out a mastectomy. My stomach is strong. Yet I was surprised to find that being present in the delivery room watching a natural birth was harder than watching someone being cut open. It wasn't the blood that was difficult to watch. Seeing my sister in pain was frightful. Pain management, or the ability to control it, is such a given today. Before me was living proof that the invention of anaesthesia has transformed life beyond surgery. It has transformed our relationship with pain forever.

Source: TunbridgeWellsMuseum.org

Welcome to the Church of the Storms

Yesterday I went to Malina's funeral. It was one of the most beautiful I have ever been to. The sun rose into azure blue sky and after the usual rush getting children to school, I picked up a Mermaid friend and headed west. We drove past starry yellow gorse and stone towers, crumbling remnants of Cornish tin mines, towards the Lizard peninsula. The service was held at St. Winwaloe, a church that looks like it's been carried by some supernatural force and set down amongst rugged coastline and sand dunes on a whim. A church has been on this site since the fifth century. It's only separated from the beach by Castle Mound, a rocky retaining wall. As you walk into the churchyard, a sign reads: Welcome to the Church of the Storms.

I've only known Malina as a fellow breast cancer patient and Mermaid, so it was wonderful to hear all about her life before we met. Walking away from the church, I left behind my image of her wearing a headscarf and nursing her swollen body. My friend is a talented musician, a pianist and soprano with the gift of perfect-pitch. I can hear Malina and her sister playing Gabriel Fauré's Morceau de Concours and I can see the ornate fifteenth-century woodcarvings, the roof beams, the light pouring in through stained glass. The waves are crashing on the rocks, and the sand martins are calling from the eroding cliffs. I can even hear the sounds from the farm up the road. What a glorious life. Listen.

Back to work with ol' Sawbones

I've been distracted from working on my book lately. Filming the documentary about Mermaids and a string of sad events, including Malina's death, have wrong-footed me. Yet, apart from needing to let events sink in and come to terms with a new reality, taking time out from your work is so important. Not least because having a rest can give you a fresh eye when you go back to it. "Give your brain a vacation", says an article I've kept from years ago. And I've found that when I let go of the creative process, the project finds its way back of its own accord.


The book is back on track thanks to Sally Frampton, a medical historian at University College London. She took part in the documentary and during filming she asked me if I knew about two trainee surgeons in The Pickwick Papers, Charles Dickens's serialised first novel. I didn't, so as soon as I got back after filming I found it on the Kindle and started to read it. Dickens calls the men "a couple o' sawbones", which I find deliciously telling. I won't say too much about it because I'm having lots of fun working the characters into my book. They may be truly revolting, but they've got me back into the swing of things, and I'm rather fond of them now. Back to work then, Sawbones!

Conviviality at Bob Sawyer's

Phiz (Hablot K. Browne)

May 1837

Steel Engraving

Dickens's Pickwick Papers

Scanned image by Philip V. Allingham at VictorianWeb

Panto Daffs

 

 

Daffodils for Malina

On 8 March 2012, Malina Bowman, a fellow Mermaid, wife, mother and friend, passed away at St. Julia's Hospice in Hayle. The hospice is next door to the hospital where we had our surgeries and is a poignant reminder to me that, despite our modern age and so much knowledge at our fingertips, we have such pitiful control over cancer. It continues to mystify; it is still, as Fortune magazine described in 1937, "The Great Darkness". The proof is on Malina's blog, an honest account about her sometimes positive, sometimes gruelling experience with breast cancer: missoestrogenpositive.blogspot.com.


A few weeks ago, I visited Malina's house and took her some soup. She was struggling with the irrevocable truth that her disease was progressing despite everything she had tried to reverse it. It was terribly hard to focus, even for a moment, on anything joyful, but I felt that I needed to try. I needed to find something that would give Malina some respite in the darkness. I thought about Barbara Kingsolver's High Tide in Tucson. She says: "In my own worst seasons I've come back from the colorless world of despair by forcing myself to look hard, for a long time, at a single glorious thing: a flame of red geranium outside my bedroom window. And then another: my daughter in a yellow dress. And another: the perfect outline of a full, dark sphere behind the crescent moon." I went out and returned a few minutes later with a bunch of daffodils. That was the last time I saw Malina.


I want to support the work of the amazing people who have spent their days nurturing her and guiding her family through this terrible sadness. On 18th March - mother's day - my sister Aimee and I are doing a fun-run, dressing up as a bunch of daffodils and running three-legged, to raise money for Cornwall Hospice Care. (If you would like to donate, my justgiving page is here.) Malina was bags of fun and I like to think Malina (who among her many talents loved performing in pantomime) would get a kick out of watching us camp it up in our panto-inspired, home-made daffodil suits.


For you, Malina.

Mermaids, monsters and movie-making

The story of Mermaids and Monsters, my book about mastectomy and the history of breast cancer surgery, is being made into a short documentary. The director, James Williams, is a final-year BA TV student at Bournemouth, and originally contacted me for advice only; his intention was to explore alternative treatments and approaches to breast cancer. After reading a few chapters of Mermaids, he decided he wanted to make a film about my quest to put my experience in the context of 200 years of surgical, literary and women's history. I was chuffed.


We just wrapped up a week of filming, which started in Cornwall. My children were thrilled to have four exciting new people to stay and loved it. The film crew followed me around as I spoke to my surgeon and the head breast care nurse at the Mermaid Centre. We had tea and scones at Dolly's Tea Room and Wine Bar in Falmouth — a favourite hangout for us mermaids (you can get a taste for it here!). And we went for dramatic walks along the amazing coastal path near Lamorna and the nature reserve belonging to the Minack Chronicles Nature Trust, a place that puts human experience into humbling perspective.

We headed to London and spoke to experts at the Old Operating Theatre and Herb Garret museum in Southwark and at the Wellcome Collection, as a result of which I was given a mock amputation while lying on an operating table dating from 1820, and was later able to pore over original copies of the Lancet medical journal from 1851 about fears of surgical "mania" resulting from the invention of anaesthesia. (Who'd have thought anyone could look back at the good old days of no anaesthesia with fondness? Cripes.) Now I can't wait to see the final film, which James has agreed could be screened at a fundraiser for breast cancer. Cheers James, and thanks to your fab crew too - Jacob, Clare and Harry!

Alternative treatments for breast cancer: lead, brimstone and parsnips anyone?

Last night I came upon a book, published in 1761 by John Wesley and digitised by Googlebooks, called Primitive Physick, or an Easy and Natural Method of Curing Most Diseases. It was written as a self-help book, a home remedy manual for diseases from "Obfructed Perfpiration, vulgarly called catching Cold" to cancer, and was designed to save people the money they would otherwise spend on doctors and quacks, by using ingredients they might find easily or about the house. 

It was such a popular book in its day that this was the ninth edition, and the author added "Tried" to some of the remedies within to prove that they worked. Thus one of the "proven" remedies for a certain type of ague (a flu-like condition) is a plaster of treacle and soot, applied to the wrist. While I'm not convinced, this would have given the eighteenth-century reader some hope that they would find success and the impetus to give the remedy a try.

I was fascinated in particular by a section on how to attend to cancer of the breast, shedding more light on some of the things Fanny Burney might have attempted when she discovered her lump at the turn of the nineteenth century. Anything rather than have surgery! Most of them sound healthier than the hemlock and arsenic that Alfred Velpeau experimented with in his 1854 Treatise on the Diseases of the Breast. Only marginally, mind.

I give you an extract here with a warning: don't try this at home...

(From Primitive Physick by John Wesley, published by W. Strahan, 1761. Pages 40 - 41. For ease of reading I've typed s instead of the eighteenth-century preference for it, f:)

24. (Condition no.) A Cancer in the Breast*

99. (Remedy no.) Use the Cold Bath. This has cured many. This cured Mrs. Bates of Leicestershire of a Cancer in her Breast, a Consumption, a Sciatica, and Rheumatism which she had had near twenty Years. —She bathed daily for a Month and drank only Water.

[*A Cancer is an hard round uneven painful Swelling, of a blackish or leaden Colour, the Veins round which seem ready to burst. It comes commonly at first with a Swelling about as big as a Pea, which does not at first give much Pain, nor change the Colour of the Skin]

Generally where Cold Bathing is necessary to cure any Disease, Water drinking is so to prevent a Relapse.

100. If it be not broke apply a Piece of Sheet-lead beat very thin and pricked full of Pin-holes, for Days or Weeks, to the whole Breast. —Purges should be added every third or fourth Day:

101. Or, Rub the whole Breast Morning and Evening with Spirit of Hartshorn:

102. Or, take a mellow Apple, cut off the Top, take out the Core, fill the Hole with Hogs-grease then cover it with the Top, and roast the Apple thoroughly, take off the Paring, beat the Pap well, spread it thick on Linnen, and lay it warm on the Sore, putting a Bladder over it. —Change this every twelve or twenty four Hours:

103. Take Horses-Spurs and dry them by the Fire, 'til they will beat to a Powder. Sift and infuse two Drams in two Quarts of Ale; drink half a Pint every six Hours, new Milk warm. It has cured many. Tried.

104. Or, apply Goose-dung and Celandine beat well together and spread on a fine Rag. It will both cleanse and heal the Sore:

105. Or, a Poultis of wild Parsnips, Flowers, Leaves and Stalks, changing it Morning and Evening:

106. Or, live three Months on Apples and Apple-Water:

107. Or, take half a Dram of Venice-Soap twice a Day:

108. Or, take Brimstone and Gas of Sulphur as Art. This has cured one far advanced in Years.

Breast cancer surgery: stories from 1930 onwards

On Tuesday 29 December 2011, BBC Radio Cornwall broadcast an interview my surgeon and I did about my book project, Mermaids and Monsters, a history of breast cancer surgery. I'm looking for patient stories to help paint a picture of what it was like for women in the recent past to undergo surgery for breast cancer. I have access to archives from hundreds of years ago, but all the records are unavailable to view from the 1930s onwards. Thus, we did the radio broadcast to see if there was anybody who had any family stories to share about their experiences of breast cancer surgery in the twentieth century.

If you want to share a story, I would love to hear from you, in a comment or by email. 

My email address is lessangermoresmile@yahoo.com.

With grateful thanks - Kelly.