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.