Tuesday, 22 November 2011

An introduction to Mermaids and Monsters

I haven't been blogging for some months because I am now working hard on my book, Mermaids and Monsters. It's part memoir, part history of breast cancer surgery. Here is the first draft of the introduction - a preview for my oncofruit friends.

Ask yourself this. Do you feel lucky? The question is on my mind quite frequently; I’ve got a picture of Clint Eastwood pointing a gun at me on my computer desktop. I was diagnosed with a form of early breast cancer, DCIS (Ductal Carcinoma in Situ), in December 2009 at the Mermaid Centre in Truro, Cornwall, and have had Dirty Harry on my desktop ever since. I am apparently one of a growing number of ‘previvors’, people who are advised to have surgery to escape invasive breast cancer, in my case by having a mastectomy. I don’t call myself a survivor because my life was not yet under threat; we found my disease just in time. My surgeon reckons it would certainly have been a different story within a couple of years; I would have had invasive breast cancer just in time for my 40th birthday.

From very early on I was driven to try and understand what the hell was happening to my body. Just the word carcinoma, the reference to cancer in DCIS, evokes powerful fear and conjecture. Cancer is one of the oldest illnesses there is; while written evidence of it goes back to ancient Egypt, biological clues have even been found in dinosaur bones. Siddhartha Mukherjee writes in his 2011 biography of cancer that it’s an “ancient disease - once a clandestine, ‘whispered about’ illness - that has metamorphosed into a lethal shape-shifting entity imbued with such penetrating metaphorical, medical, scientific and political potency that cancer is often described as the defining plague of our generation.” Susan Sontag identified in Illness as Metapor the punitive, lurid metaphors for cancer that make the illness even harder to deal with:  “as long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have.” The disease has been destructive for thousands of years; no wonder it retains a powerful hold on the imagination.

Asking questions, trying to get my head around this terrifying monster and forge it somehow into a more palatable shape, was the only way I could keep my fear at bay – and my family’s. I found a passion for blogging about my surgery and its aftermath that metamorphosed into a no-holds-barred learning journey that I’m sure drove my surgeon nuts as I asked him question after question after question; I bought sushi in the hospital shop one evening after clinic so he would be able to sit and explain every detail about my treatment without leaving for dinner. Understanding different types of cancer and its treatment, talking about it in a way that didn’t involve wars and battles and victims and survivors, using references like Dirty Harry that were mine alone (and sometimes made me laugh) put my experience into a new perspective, a different framework, that helped me cope.

When I realised how important it was for me to understand – in detail -  how my surgery had been done, my surgeon and I talked about it using an orange as a stand-in for the breast, because the literature about it went right over my head. He even sent me a text with a picture of an orange he had sculpted to demonstrate how he’d created a new areola complex out of skin from my back. This led to us doing workshops together about how surgery and reconstruction works. We called the workshops ‘Operation Orange’. Sharing this newfound knowledge with other people was scary but satisfying, enjoyable and comforting in the context of craft, and allowed everyone, including me, to talk about the disease and surgery, and individual experiences, in an open and honest manner. (It helped that we washed down our conversation with orange remnants in jugs of Pimms.) I found I was able to explain my surgery to my children in an unthreatening way, and it helped non-patients understand what their friends and relatives had been through. I even ended up doing the workshops on my own with breast screening professionals at an NHS education day.

An appreciation of the surgeon’s craft awakened my interest in the history of surgery. I learned about a letter by Fanny Burney, a novelist around the time of Jane Austen, describing her own mastectomy on 30 September, 1811 and it blew me away. It was written several months after the event, but the memory of that day, the preparation at home, and the description of the surgery itself leaps from the page: “When the dreadful steel was plunged into the breast,” she wrote, “cutting through veins - arteries - flesh - nerves - I needed no injunctions not to restrain my cries.” She didn’t hold back in her letter; she wanted to share everything with her reader and I instinctively understood that need: the need to talk about the experience, to make some kind of sense of it, to put it into perspective. I decided I wanted to know about other patients and surgeons through history and weave their stories into my own as well. And so this book project began.

If Fanny Burney could look surgery in the eye, then so could I. For a long time I had been asking my surgeon if I could visit him in theatre and watch him carrying out a mastectomy and reconstruction. I didn't feel that I could write accurately about surgery or educate others unless I had experience on the other side of the table. He always said “of course!”, but then the conversation would go no further. I decided to write a letter to the NHS Trust asking for official permission to watch live surgery, and when I showed it to him, he realised I was serious. It didn’t take long before I received a contract from the ‘Surgical Directorate’: I was being given permission to do work experience for a week, to shadow my surgeon not only in theatre, but to attend clinic with him as well. It was one of the most amazing weeks of my life.

As my research gained momentum, I became interested in references to fear and imagination along with the medical history. I began by reading Mary Shelley’s Frankenstein, published in 1818. At one point, I’d felt like a monster, mutilated and unnatural; my breast was a terrible disfigurement, and many of the women I spoke to about their surgery made exactly the same analogy: we all felt “like Frankenstein”. I wondered how women in the nineteenth century responded to Frankenstein, as it was written in their time and would have embodied many of their fears about the body and surgery and science. For the same reason I looked at the Brothers Grimm (who were collecting folk tales in the 1800s) and fairytales, and I even found a tale called “The Three Surgeons” which shed a different kind of light on what people thought of surgeons all those years ago. And I think, while Diane Purkiss points out in her book about the history of fairies, that fairytales and folklore are “born of fear”, they often seek a “happy ever after”, in which justice is done, and fear is conquered, which is perhaps what we are all searching for, no matter what time we were born in.

The time came to look for more patient stories — to look beyond Fanny Burney. As luck would have it, I was given some money by a Cornish organisation, the Minack Chronicles Nature Trust, to allow me to travel to London and spend some time there exploring surgical registers and case books in old hospital archives. I dug around in archives and libraries without always knowing what I was looking for; my faithful companions were stubby pencils and snake-weights that curled around the pages of faded, weather-beaten books. l spent days encountering poor nineteenth century breast cancer patients – milk carriers, cooks, needlewomen and boot-binders – and trying to decipher their prescriptions and piece together their lives before and after surgery, trying to put myself in their shoes, and most of all wondering about their thoughts and fears, hopes and dreams. Those patients made me feel unequivocally lucky. For starters, it was impossible to imagine what it must have been like to go through surgery without anaesthetic. I felt lucky to have been born in a time when we can have surgery with all the benefits of modern technology (and with the knowledge that we will sleep through it).

In a small windowless office, tucked away in a basement on Euston Road, the archivist at the University College London Hospitals Trust, Annie Lindsay, found a register – a large, brown tome with metal clasps to hold it closed - of breast cancer patients on the cancer ward at Middlesex Hospital dating from 1805 onwards. I noted that most of the patients did not leave the hospital. I sat with the hospital mace with which the porters used to guard the board room and ornately crafted clocks behind me, gifts from rich and grateful patients to their surgeons, although the women I was reading about were on the other end of the social scale. I found myself asking: if I had been born in that time, which patient might I have been? Would I have been one of the lucky ones? Without breast screening my disease would never have been found at an early stage. I was struck by one patient from 1826, thirty three year-old Elizabeth Jones, who had a tumour “the size of a small orange” in her right breast. But it was another patient, from 1838, who really resonated. She had disease in her left breast, like me; she found it at Christmas, like me; she had post-surgical complications with wound healing, like me, although, like the rest of the women treated before 1846 (when anaesthetics started to be used) she had surgery with no pain relief, and she was fortified with wine and beef tea to “give her strength” while her post-surgical wound festered.

I came back to Cornwall to write the book and now, every time I start up my computer and Clint Eastwood appears pointing his gun at me, I think about what might have been. I don’t know if my historical alter ego survived – it didn’t say in the cancer book – and because her name was (and is) a common one, it’s impossible to cross-reference her with census data or other sources. I like to think she went on to live happily ever after, but it’s more likely that she died sooner rather than later, either from her wound becoming infected, or from her cancer coming back, as was often the case in those days. Her name was Caroline Wilson. This book is dedicated to her.

Saturday, 21 May 2011

Crafting change: putting your heart into it

Today I presented my first craft workshop in the traditional sense — you may be relieved to hear we're talking knitting, sewing and playing with fabric, rather than doing mastectomies on oranges or suturing body parts made of sponge. My workshop was just one part of an entire day dedicated to exploring the "Heart of Change": a concept that was very personal and unique to every participant there.
I invited everyone to design their own square for inclusion in a textile artwork which will eventually hang in the new "Made for Life" centre — a new space in Cornwall for people with cancer and their families and friends. It's to be a nurturing and supportive space. (You can find out more about Made for Life on Facebook).The only direction for the artwork was to consider "embracing change", and I made a display so people could read about where the idea came from and get a sense of what they might do.
I wanted to share the power of craft to help heal: the process of creating is cathartic for the individual, but there is power in looking as well. Other people’s work can reach out to us and help us feel supported, acknowledged, even cared for — like Wendy Jobber's textile at the Hunterian Museum did for me (I wrote about that experience here). 
As a whole, the textile artwork we make will celebrate community and mutual support, while each unique square acknowledges the individual experience. The process and the interaction between this group of lovely women was a pleasure to witness. I wish I could bottle that somehow and include it in the artwork. I will have to think of a way.
I finished the workshop with one of my favourite excerpts from Barbara Kingsolver — she says that she has come back from the "colourless world of despair" by forcing herself to look hard at a "single glorious thing: a flame of red geranium on my windowsill", "my daughter in a yellow dress". It's my hope that, when it is eventually finished and hanging in the Made for Life centre, this artwork will be a visual balm to the viewer, whatever their own story is. Thanks wonderful ladies, for putting your hearts into this project.

Wednesday, 4 May 2011

Beastly Blessings: my new book idea

Today I put this video together to give others some idea of what's going on in my head in regards to my new book proposal. I am planning to write about 200 years of breast cancer surgery from the vantage point of someone who's been through it themselves. I'd love to know what people think.

Monday, 7 March 2011

Mastectomy in 1930: Real melodrama?

My goodness. I have found, thanks to the UCL outreach historian at the Wellcome Trust, a black and white film of a mastectomy, filmed in the operating theatre in 1930 by Kodak at King's College Hospital in London. The film looks and feels like a melodrama as it opens. Just take a look at these four introductory stills. I have started watching the surgery but I had to pause it. Even in black and white, I am going to need a strong stomach.

Source: Wellcome Trust. Used under Creative Commons licence.

Thursday, 3 March 2011

Cambric and steel: Mastectomy in 1811

"Bright through the cambric, I saw the glitter of polished Steel - I closed my Eyes."
We were talking last night at the Mermaid support group about my plans to write a history of breast cancer surgery, and my wish to find some mastectomy tales from enlightenment England. Frances, one of the breast care nurses, told me she has a book in her loo, a volume of "reportage", edited by John Carey. In the book is a letter penned by a famous writer of the time called Fanny Burney - "Madame d'Arblay" - about her mastectomy in 1811. Perfect toilet reading? Perhaps. It's an account that makes your insides shrivel: This was the pre-anaesthetic era, and seven men held her down during the twenty minute operation conducted by Napoleon's surgeon. I found the letter online and in case you care to read it, I've copied it below assuming that I'm not flouting any copyright laws (I think 200 years should be adequate and I'm assuming John Carey won't mind). You don't have to read it all to realise how vivid and eloquent it is (it's also very long!) I was fascinated by the scene of the surgery itself, and the relationship between the surgeon and patient - he cannot look her in the eye. She's a woman of extraordinary strength, both of character and body.

A Mastectomy, 30 September 1811
Fanny Burney

Fanny Burney [Madame d'Arblay] first felt pain in her breast in August 1810. Cancer was diagnosed, and Baron Larrey, Napoleon's surgeon, agreed to perform the operation. To spare her suspense, she was given very little notice. The M. d'A. of the account is her husband, and Alexander her son.

One morning - the last of September, 1811, while I was in Bed, & M. d'A. was arranging some papers for his office, I received a Letter written by M. de Lally to a journalist, in vindication of the honoured memory of his Father against the assertions of Mme du Deffand. I read it aloud to My Alexanders, with tears of admiration & sympathy, & then sent it by Alex: to its excellent Author, as I had promised the preceding evening.

I then dressed, aided, as usual for many months, by my maid, my right arm being condemned to total inaction; but not yet was the grand business over, when another Letter was delivered to me - another, indeed! - 'twas from M. Larrey, to acquaint me that at 10 o'clock he should be with me, properly accompanied, & to exhort me to rely as much upon his sensibility & his prudence, as upon his dexterity & his experience; he charged to secure the absence of M. d'A.- & told me that the young Physician who would deliver me his announce would prepare for the operation, in which he must lend his aid: & also that it had been the decision of the consultation to allow me but two hours' notice. - judge, my Esther, if I read this unmoved! - yet I had to disguise my sensations & intentions from M. d'A!

Dr Aumont, the Messenger & terrible Herald, was in waiting; M. d'A stood by my bedside; I affected to be long reading the Note, to gain time for forming some plan, & such was my terror of involving M. d'A. in the unavailing wretchedness of witnessing what I must go through, that it conquered every other, & gave me the force to act as if I were directing some third person. The detail would be too Wordy, as James says, but the wholesale is - I called Alex to my Bedside, & sent him to inform M. Barbier Neuville, chef du division du Bureau de M. d'A. that the moment was come, & I entreated him to write a summons upon urgent business for M. d'A. & to detain him till all should be over. Speechless & appalled, off went Alex, &, as I have since heard, was forced to sit down & sob in executing his commission.

I then, by the maid, sent word to the young Dr Aumont that I could not be ready till one o'clock: & I finished my breakfast, & - not with much appetite, you will believe! forced down a crust of bread, & hurried off, under various pretences, M. d'A. He was scarcely gone, when M Du Bois arrived: I renewed my request for one o'clock: the rest came; all were fain to consent to the delay, for I had an apartment to prepare for my banished Mate. This arrangement, & those for myself, occupied me completely. Two engaged nurses were out of the way - I had a bed, Curtains, & heaven knows what to prepare - but business was good for my nerves. I was obliged to quit my room to have it put in order- - Dr Aumont would not leave the house; he remained in the Salon, folding linen! - He had demanded 4 or 5 old & fine left off under Garments - I glided to our Book Cabinet: sundry necessary works & orders filled up my time entirely till One O'clock, When all was ready - but Dr Moreau then arrived, with news that M. Dubois could not attend till three. Dr Aumont went away - & the Coast was clear. This, indeed, was a dreadful interval. I had no longer anything to do - I had only to think - TWO Hours thus spent seemed never-ending.

I would fain have written to my dearest Father - to You, my Esther - to Charlotte James - Charles - Amelia Lock - but my arm prohibited me: I strolled to the Salon - I saw it fitted with preparations, & I recoiled - But I soon returned; to what effect disguise from myself what I must so soon know? - yet the sight of the immense quantity of bandages, compresses, sponges, Lint - made me a little sick: - I walked backwards & forwards till I quieted all emotion, & became, by degrees, nearly stupid - torpid, without sentiment or consciousness; - & thus I remained till the Clock struck three.

A sudden spirit of exertion then returned, - I defied my poor arm, no longer worth sparing, & took my long banished pen to write a few words to M. d'A - & a few more for Alex, in case of a fatal result. These short billets I could only deposit safely, when the Cabriolets - one - two - three - four - succeeded rapidly to each other in stopping at the door. Dr Moreau instantly entered my room, to see if I were alive. He gave me a wine cordial, & went to the Salon. I rang for my Maid & Nurses, - but before I could speak to them, my room, without previous message, was entered by 7 Men in black, Dr Larry, M. Dubois, Dr Moreau, Dr Aumont, Dr Ribe, & a pupil of Dr Larry, & another of M. Dubois. I was now awakened from my stupor - & by a sort of indignation - Why so many? & without leave? - But I could not utter a syllable.

M. Dubois acted as Commander in Chief. Dr Larry kept out of sight; M. Dubois ordered a Bed stead into the middle of the room. Astonished, I turned to Dr Larry, who had promised that an Arm Chair would suffice; but he hung his head, & would not look at me. Two old mattresses M. Dubois then demanded, & an old Sheet. I now began to tremble violently, more with distaste & horror of the preparations even than of the pain. These arranged to his liking, he desired me to mount the Bed stead. I stood suspended, for a moment, whether I should not abruptly escape - I looked at the door, the windows - I felt desperate - but it was only for a moment, my reason then took the command, & my fears & feelings struggled vainly against it. I called to my maid - she was crying, & the two Nurses stood, transfixed, at the door. Let those women all go! cried M. Dubois. This order recovered me my Voice - No, I cried, let them stay-! qu'elles restent ("Let them remain!")!

This occasioned a little dispute, that re-animated me - The maid, however, & one of the nurses ran off - I charged the other to approach, & she obeyed. M. Dubois now tried to issue his commands en militaire, but I resisted all that were resistable - I was compelled, however, to submit to taking off my long robe de Chambre, which I had meant to retain - Ah, then, how did I think of my Sisters! - not one, at so dreadful an instant, at hand, to protect - adjust - guard me - I regretted that I had refused Mile de Maisonneuve - Mile Chastel - no one upon whom I could rely - my departed Angel! - how did I think of her! - how did I long - long for my Esther - my Charlotte! -

My distress was, I suppose, apparent, though not my Wishes, for M. Dubois himself now softened, & spoke soothingly. Can You, I cried, feel for an operation that, to You, must seem so trivial? - Trivial? he repeated - taking up a bit of paper, which he tore, unconsciously, into a million of pieces, oui - cest peu de chose - mais ("Yes, it is a little thing, but") - 'he stammered, & could not go on. No one else attempted to speak, but I was softened myself, when I saw even M. Dubois grow agitated, while Dr Larry kept always aloof, yet a glance showed me he was pale as ashes. I knew not, positively, then, the immediate danger, but every thing convinced me danger was hovering about me, & that this experiment could alone save me from its laws. I mounted, therefore, unbidden, the Bed stead - & M. Dubois placed me upon the mattress, & spread a cambric handkerchief upon my face.

It was transparent, however, & I saw, through it, that the Bedstead was instantly surrounded by the 7 men & my nurse. I refused to be held; but when, Bright through the cambric, I saw the glitter of polished Steel - I closed my Eyes. I would not trust to convulsive fear the sight of the terrible incision. A silence the most profound ensued, which lasted for some minutes, during which, I imagine, they took their orders by signs, & made their examination - Oh what a horrible suspension! - I did not breathe - & M. Dubois tried vainly to find any pulse. This pause, at length, was broken by Dr Larry, who, in a voice of solemn melancholy, said 'Qui me tiendra ce sein? ("Who will hold the center?") - ' No one answered; at least not verbally; but this aroused me from my passively submissive state, for I feared they imagined the whole breast infected - feared it too justly, - for, again through the Cambric, I saw the hand of M. Dubois held up, while his forefinger
first described a straight line from top to bottom of the breast, secondly a Cross, & thirdly a Circle; intimating that the WHOLE was to be taken off.

Excited by this idea, I started up, threw off my veil, &, in answer to the demand 'Qui me tiendra ce sein?' cried 'C'est moi, Monsieur!' & I held my hand under it, & explained the nature of my sufferings, which all sprang from one point, though they darted into every part. I was heard attentively, but in utter silence, & M. Dubois then replaced me as before, &, as before, spread my veil over my face. How vain, alas, my representation! immediately again I saw the fatal finger describe the Cross - & the circle - Hopeless, then, desperate, & self-given up, I closed once more my Eyes, relinquishing all watching, all resistance, all interference, & sadly resolute to be wholly resigned.

My dearest Esther, - & all my dears to whom she communicates this doleful ditty, will rejoice to hear that this resolution once taken, was firmly adhered to, in defiance of a terror that surpasses all description, & the most torturing pain. Yet - when the dreadful steel was plunged into the breast - cutting through veins - arteries - flesh - nerves - I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision - & I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, & the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp & forked poniards, that were tearing the edges of the wound - but when again I felt the instrument - describing a curve - cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator, who was forced to change from the right to the left - then, indeed, I thought I must have expired.

I attempted no more to open my Eyes, - they felt as if hermetically shut, & so firmly closed, that the Eyelids seemed indented into the Cheeks. The instrument this second time withdrawn, I concluded the operation over - Oh no! presently the terrible cutting was renewed - & worse than ever, to separate the bottom, the foundation of this dreadful gland from the parts to which it adhered - Again all description would be baffled - yet again all was not over, - Dr Larry rested but his own hand, & - Oh Heaven! - I then felt the Knife tackling against the breast bone - scraping it! - This performed, while I yet remained in utterly speechless torture, I heard the Voice of Mr Larry, - (all others guarded a dead silence) in a tone nearly tragic, desire everyone present to pronounce if anything more remained to be done; The general voice was Yes, - but the finger of Mr Dubois - which I literally felt elevated over the wound, though I saw nothing, & though he touched nothing, so indescribably sensitive was the spot - pointed to some further requisition - & again began the scraping! - and, after this, Dr Moreau thought he discerned a peccant attom - and still, & still, M. Dubois demanded attom after atom.

My dearest Esther, not for days, not for Weeks, but for Months I could not speak of this terrible business without nearly again going through it! I could not think of it with impunity! I was sick, I was disordered by a single question - even now, 9 months after it is over, I have a headache from going on with the account! & this miserable account, which I began 3 Months ago, at least, I dare not revise, nor read, the recollection is still so painful.

To conclude, the evil was so profound, the case so delicate, & the precautions necessary for preventing a return so numerous, that the operation, including the treatment & the dressing, lasted 20 minutes! a time, for sufferings so acute, that was hardly support- able - However, I bore it with all the courage I could exert, 8c never moved, nor stopt them, nor resisted, nor remonstrated, nor spoke - except once or twice, during the dressings, to say 'Ab Messieurs! que je vous plains! - ' for indeed I was sensible to the feeling concern with which they all saw what I endured, though my speech was principally - very principally meant for Dr Larry. Except this, I uttered not a syllable, save, when so often they recommended, calling out 'Avertissez moi, Messieurs! avertissez moi! ("Tell me!") - 'Twice, I believe, I fainted; at least, I have two total chasms in my memory of this transaction, that impede my tying together what passed.

When all was done, & they lifted me up that I might be put to bed, my strength was so totally annihilated, that I was obliged to be carried, & could not even sustain my hands & arms, which hung as if I had been lifeless; while my face, as the Nurse has told me, was utterly colourless. This removal made me open my Eyes - & I then saw my good Dr Larry, pale nearly as myself, his face streaked with blood, its expression depicting grief, apprehension, & almost horror. When I was in bed, - my poor M. d'Arblay - who ought to write you himself his own history of this Morning - was called to me - & afterwards our Alex.

Source: From Eyewitness to History by John Carey found at http://wesclark.com/jw/mastectomy.html

Thursday, 17 February 2011

There is an alternative to pink!

I've been struggling with how to express my feelings about the pink breast cancer ribbon without causing offence, or diminishing what is truly a valuable awareness-raising tool, a sign of moral support and a source of comfort for many. Then the universe goes and plops the beginnings of an answer in my lap. I'm in the car coming back from Argos with my husband driving and find myself screeching STOP!!! as we pass a shop window. I catch a glimpse of blue painted torso and red doughnut breasts. I fling open the car door and roll over a few times as he speeds away. Not really. I make him go around the block and pull over safely, kids. (Can you tell I'm excited? RARRRRR!!!)

Turns out the painting is a screenprint (in this case, on a tote bag) by an illustrator called Lucie Sheridan, and as soon as I see it I know just why the pink ribbon disappoints me. The pink ribbon makes me think, first, that breast cancer is a female disease. Well, yes it is mostly, but men DO get breast cancer, and can you imagine how alienating and disturbing it is to their sense of self? God knows it's hard enough for women. The pink ribbon also reinforces the idea that it's a one-size-fits-all disease. It isn't. There are so many different types of breast cancer, affecting each and every person differently. And we don't all want to wear pink - nothing wrong with it, I just find I can't comfortably align myself with it, for whatever reason. So. The bag has given me an idea. Hurrah! More soon.

Tuesday, 8 February 2011

Changing the world one orange at a time

At one of my first Operation Orange workshops, in which I use craft (to help people understand breast surgery and reconstruction) and Pimms (to get them in the mood), it just so happened a design historian was in the audience. Deborah Sugg Ryan has been observing the culture of craftivism that's all around us — that's craft + activism (more on that below) — and has been working on a proposal with a colleague, Fiona Hackney, for an upcoming Design History conference on Design Activism and Social Change.

Deborah's been very careful to point out to me that her document is still at the proposal stage, but she is letting me reproduce the abstract now because, well, a) it's so cool and b) my orangey fun gets a mention. The abstract picks up on some fascinating stuff. I had to start by looking up antimacassar (they are practical and often decorative squares draped over the back of the sofa to prevent greasy marks being left by well-oiled hair. Edwardian men were partial to a bit of 'Macassar' oil.) And the list of radical craft organisations is simply inspiring, and worth looking into.

‘Under the Pavement Lies the Antimacassar’: Quiet Activism and Radical Domestic Crafts
From self-proclaimed Stitch ‘n’ Bitch groups to ‘yarn bombing’, the social and political activism of the craftivism movement (e.g. Betsy Greer’s Knitting for Good),  ‘stunt’ and ‘extreme’ knitting, the work of artists such as Freddie Robins, the Ravelry knitting community, Etsy and the vast array of blogs, websites and publications such as Dominiknitrix, Hand-Made Nation, yarnageddon.com and  DIYcouture that market making and amateur crafts, we are witnessing a seemingly unstoppable resurgence of interest in traditional ‘women’s’ crafts. Any consideration of crafting involves a complicated critique when crafts in the workplace (mainly undertaken by men) continue to be presented as resistant, in contrast to women’s home craft, which is for personal pleasure or decorative purposes.  When property developer and tv presenter Kirsty Allsopp entreats us to make things for the home, as a writer on the Craft and Sustainability website recently observed, does this represent a critique of capitalism or a return to ‘traditional values’?

Through a selection of contemporary case studies this paper argues that what embroiderer Deidre Nelson terms the ‘quiet activism’ of craft practice undertaken at home, in public spaces or Minahan & Cox’s virtual ‘third spaces’ (blogs and facebook pages), mainly but not exclusively by women employing traditional skills, is, and has always been, radical.  Kelly Stevens’ ‘Operation Orange’ (using craft skills to empower breast cancer patients and educate health professionals), the ‘Ohsewbrixton’ sewing co-operative, the Shoreditch Sisters WI group for whom ‘knitting and making jam are an act of rebellion’ and make-do-and-mend.org with their utility-inspired slogan, ‘Use it up, wear it out, make it Do and Do without’, represent a new generation of young women who find no contradiction between making and mending and feminism.  For them crafting foregrounds health, ethical living and collective action; values traditionally embedded within the domestic crafts and women’s lives.  

Thursday, 3 February 2011

Cure the body, but don't forget the mind: Body Image Research

A fellow patient recently told me about the work of a Clinical Psychology PhD candidate studying breast cancer surgery and body image. Helen La Vesconte is looking for women who are about to undergo mastectomy with or without reconstruction to help her research:
"As part of the University of Southampton, researchers and clinicians are interested in studying the beliefs that people have about their appearance and its influence on their life. Body image and concern about appearance can have a significant impact on people’s mental and physical health."
Helen notes:
"The Australian National Breast Cancer Centre suggested in 2004 that all BCNs (breast care nurses) and cancer services should highlight potential problems in body image and sexuality following surgery. There was a similar thing in a 2008 UK paper, basically saying that what cancer services considered "psychological distress" needed to be broadened to include body image and sexual difficulties following treatment."
Although so many women struggle with body image after losing a breast, in the UK at least there is still not consistent psychological support or preparation for that loss. Services vary wildly. Body Image Research has a Facebook page that proves there's a gap that needs to be filled; over a thousand women have signed up simply to share their experiences of body image issues, and for some it seems there is simply no other outlet. It's a fantastic thing to be able to rid the body of breast cancer. I think it would be a fantastic thing if we could rid our minds of the peculiar shame that too often ensues after surgery and treatment. I hope this study goes some way towards making that happen.
You can find out more about the study or sign up at BodyImageResearch.org.uk

Beastly blessings

I was having a cup of tea the other day with a friend who's also had a mastectomy and we were comparing our breast reconstructions and talking about how we've felt about our bodies during our recovery. Breast surgery eliminates all sorts of inhibitions, I've found. I showed her mine over the top of my cuppa (white, no sugar) and then we discussed hers over her cuppa (black, two dunks). We were talking about how far we'd come in accepting the enormous change to our bodies.

We're not there yet -- both of us have our Frankenstein moments. So many women I've spoken to self-conciously refer to themselves as unattractive or even monstrous as they deal with their unasked-for body changes — whether it's losing hair from chemo, or losing a breast, or having a lumpectomy. I was so relieved to have my disease caught early, I assumed I wouldn't care what my body looked like as long as the rogue cells were all gone. Getting early treatment was a blessing. Yet I was surprised to feel so down about it at various points. I did (and I do) care. I've found dealing with body image a lengthy process; an awkward voyage of self discovery.

For me, it has helped to look back at photos of the state my breast was in when, soon after the surgery, I developed necrosis. A ping-pong ball of new breast, made from my own back (LD) muscle, withered and died. The black-edged hole that was left behind gave me a graphic window into the inside of my body: shiny, mincemeat pieces of pink-red muscle and mustard fat. At the time, it didn't bother me; I was perhaps still shell-shocked at the situation I found myself in and perversely proud of having complications (possibly due to feeling guilty at not having chemo like other patients? I don't know).

After a while though, it did upset me. It took so very long to heal. And oddly, I felt more ashamed of the way it looked when the worst was over. Close, but not close enough. But look now; here we are. I'm almost at the end of my reconstruction shenanigans. I've gained some amazing insights into the world of surgery, the extraordinary craft of the surgeon, and the resilience and power of the body.  In April, I'm having minor surgery to tidy up the sinewy, white and pink speckled scar, the evidence of my skin's desperation to heal itself (leaving hypertrophic scarring, where the skin stages an uprising and 'overheals'). After April's tidy-up, I shall have an areola tattoo. And then — though I can't take it for granted, not yet, perhaps not ever — the physical haul will be nearing closure.

Monday, 31 January 2011

Modern surgical practice: more fruit than phalanges

The following article about Operation Orange is by Heather Casey and appears in the February 2011 issue of the Royal College of Surgeons of England journal, Bulletin. The issue is dedicated to John Hunter, the "father of modern surgical practice". The cover features a portrait by Joshua Reynolds, from which Hunter, in fashionable ear-muff curls and deep red velvet, looks out with a Mona Lisa smile (possibly thinking of the giant toe phalanges on the shelf behind him). The Hunterian museum is named after the surgeon and is full of weird and wonderful — and sometimes revolting — medical and anatomical artifacts from Hunter's own eighteenth-century collection. Fast forward a couple of hundred years...

Operation Orange
A wave of laughter ripples around the table when it becomes clear that the consultant surgeon in the group is struggling to remove the ‘nipple’ of his orange with his pink craft knife. Before long Kelly Stevens, workshop host and patient of Sheikh Ahmad, interrupts saying: ‘the next step will be to scoop out the flesh of our oranges, if Sheikh gets a move on.’ Sheikh holds his hands up in response: ‘Give me a break; I’ve been awake for 32 hours straight!’

Ann R Coll Surg Engl
(Suppl) 2011; 93:52–53

Sheikh Ahmad and Kelly Stevens
Photo courtesy of Catherine Leyshon

This friendly, informal exchange between patient and surgeon epitomises Operation Orange, a breast cancer awareness group-cum-craft workshop established with the mission of helping women in Cornwall understand breast surgery and reconstruction. The initiative is the brainchild of Kelly Stevens, an avid blogger who has brought together her experience of surgery, open and honest conversations with her surgeon and an inspirational visit to the Hunterian Museum, to set up a forum in which patients and their families and friends can learn about breast surgery using craft.  

Kelly was diagnosed with high-grade ductal carcinoma in situ (DCIS) in December 2009 and after referral and discussion with Sheikh Ahmad at the Mermaid Centre in the Royal Cornwall Hospital, was advised to have a mastectomy and immediate reconstruction in February 2010. At the time of surgery she was studying for a MA in professional writing and had come across the work of Edward Humes, a journalist who had written a book on a neonatal intensive care unit in California.  Kelly decided that she would ‘do a Humes’ on reconstructive and oncoplastic surgery for breast cancer, approaching Sheikh to help her explain DCIS and reconstructive surgery.

During research, Kelly grew confused about a slow-healing wound in her back – during her breast reconstruction tissue was replaced with the latissimus dorsi muscle – so she asked Sheikh to describe the procedure she had in detail. ‘Three months after surgery I had a hole in my back that just refused to heal and Sheikh started drawing some pictures to help show me my surgery. The way he described it to me sounded like an orange being scored,’ she explains. ‘I had been given the patient literature and seen the diagrams about what was going to be done but it really went over my head and didn’t sink in at all. It wasn’t until I’d had this visual experience with an idea of an orange that I started to get it.  Knowing this, Sheikh went out and bought an orange and sculpted it to show me exactly how the hole in my back was created.’ 

Elated to finally understand her operation, Kelly posted pictures of the carved fruit on her blog and began researching the craft of surgery. Through a friend she read an article in The Guardian previewing All Stitched Up!, a craft event held in the Hunterian Museum in which craftspeople and surgeons swapped suturing skills. ‘I had just started to think about how my surgeon had closed up my breast – was it glued? Or was it blanket stitched? And then I read about this event. It seemed like a great opportunity to go and ask the surgeons how they did my breast,’ explains Kelly. ‘So literally the next day I got on a plane and flew to London. The trip was really inspiring because it opened my eyes to seeing surgery in a completely different way.’

During the event in May, Kelly read a display in the Hunterian Museum on Wendy Jobber, a textile artist who said that she found it cathartic to stitch while undergoing treatment for breast cancer, and took part in a suturing class run by Akan Emin, a clinical research fellow at the College. She explains: ‘As a heart surgeon, Akan couldn’t tell me exactly which stitches had been used for my surgery but what he did say was that he had a huge amount of respect for oncoplastic surgeons because they had an amazing eye for shape and proportion. That got me thinking differently about Sheikh; no longer did I think of him as the person who mutilated my breast but I saw him as a craftsman and a healer, and started to feel much better about myself. I vowed there and then to do something and the next stage was starting my classes.’ 

Sheikh Ahmad (foreground) carving an orange
Photo courtesy of Catherine Leyshon

In July 2010, Kelly invited a group of friends and patients to her house to do some orange carving with Sheikh and hasn’t looked back. She has been invited to run workshops at creative festivals, speak at NHS events and has made links with Made For Life, a Cornish charity supporting people with cancer.

It is clear from watching the workshop that Kelly and Sheikh have a great doctor–patient relationship, which instantly puts those attending at ease.  Patients and non-patients alike feel comfortable to ask questions about breast surgery and enjoy the challenge of a practical task from a world to which they do not normally have access. But what does the consultant oncoplastic surgeon take away from the classes? ‘The workshops are enjoyable because I get to come out and speak to women who have undergone surgery away from the clinical setting and hear their opinions about things,’ Sheikh says. ‘For example, I’ve just flown back from the San Antonio Breast Cancer Symposium to this workshop and it’s exciting to be able relay the advances that are being made in breast cancer research and discuss with these women how that research could change treatment in the future.’

He adds: ‘Kelly is unique; she’s a very curious patient and amazing to work with. Plastic surgery is not easy to understand and most people whom we tell are going to have a reconstruction with the muscle, that’s it for them, full stop. But not for Kelly, she wants to know how exactly it is done and I think it’s good that she’s asking questions because through her work she’s creating this awareness of breast cancer and DCIS.’

Copyright The Royal College of Surgeons of England. Reproduced with permission.

Operation Orange: read all about it

Fruitarians, it's been far too long since I posted, for which I apologise. I intended to write about the last workshop I did with Mr A but got distracted by the season and, truth be told, my new-found passion for knitting and Christmas cocktails.

I'm thrilled that Heather Casey, a media relations officer at the Royal College of Surgeons, has written an article about Operation Orange in the February 2011 issue of the college publication, Bulletin. The RCS has kindly agreed to let me reprint it on my blog, so that will be coming soon. Meanwhile, here it is in its rightful place online.

The RCS Bulletin allows free public access to most, if not all, of their articles, and if you're a curious sort you'll find the journal quite irresistible: look here. It's a treasure trove of insights; how surgeons think, for one:
"We love surgery because through it we can improve or even save lives, often instantaneously. Excision of cancer can prevent death, shattering of stones can silence pain, repairing a cleft completes a smile and replacing a valve rejuvenates a life. A skilled surgeon holds the power to transform".
I found that in this month's issue (p54-55) as a preface to the topic of children from developing nations requiring specialist surgery. Eye-opening. Literally.