Oncoplastic Fruit

Mermaids, monsters and movie-making

2012-02-28T14:33:00.005-08:00

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, the head breast care nurse at the Mermaid Centre, and some of the mermaids themselves; 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?

2012-02-08T02:30:00.002-08:00

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

2012-02-07T08:47:00.000-08:00

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.

An introduction to Mermaids and Monsters

2011-11-22T02:49:00.000-08:00

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. I've written (and re-written...) the introduction and - tada! - here it is. 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.

Crafting change: putting your heart into it

2011-05-21T14:05:00.000-07:00

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.

Beastly Blessings: my new book idea

2011-05-04T04:43:00.000-07:00

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.

Mastectomy in 1930: Real melodrama?

2011-03-07T13:09:00.000-08:00

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.

Cambric and steel: Mastectomy in 1811

2011-03-03T17:00:00.000-08:00

"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). What comes across in this vivid and eloquent account is not just the scene of the surgery itself, but the relationship between the surgeon and patient - he cannot look her in the eye - and her extraordinary strength, both of character and body.

Source: todayinliterature.com

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

There is an alternative to pink!

2011-02-17T06:46:00.000-08:00

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.

Changing the world one orange at a time

2011-02-08T02:20:00.000-08:00

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.

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

2011-02-03T05:09:00.000-08:00

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

2011-02-03T04:03:00.002-08:00

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.

Modern surgical practice: more fruit than phalanges

2011-01-31T14:25:00.000-08:00

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...

PATIENTS AND SURGEONS:
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.’

Operation Orange: read all about it

2011-01-31T01:56:00.000-08:00

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.

Sponge breasts 'r' us

2010-12-09T06:41:00.000-08:00

The quest for perfect breasts (to suture at Monday's surgery workshop, that is) has ended. I managed to make nine breasts out of suture-friendly Ted Stockings (one careful owner) and a pack of 20 Super Bright Sponge Scourers (99p, Trago Mills). I am so proud of them that I packed them in a special home-made box with mint-green tissue and now they look like a slightly bizarre (but oh so beautiful!) Christmas present. I texted the picture below to Mr A for approval. He's currently in San Antonio but I got a quick reply in the affirmative: Looks good Dr Kelly :). Ace! Roll on Monday!

A look back at 2010

2010-12-08T02:51:00.000-08:00

I don't much like the pointless applications that abound on Facebook, but this is one I feel differently about: My Year in Status. I've used FB pretty much all year to record my thoughts and feelings since being diagnosed with DCIS and having surgery as well as musing on the more mundane things in life. I've found it to be more supportive a medium than I ever imagined. I love talking about myself and to myself, and FB is an excuse for unadulterated verbal diarrhoea, which readers can choose to take or leave. In fact, I'll take this opportunity to say to those who chose to take and went as far as to respond throughout all my surgery shenanigans: Thanks. I'm so very grateful, because you helped me feel cared for.

Being able to look back on 2010 in a series of in-the-moment snapshots is insightful: A chance to see how things have changed, and a reminder that coming to terms with that change hasn't been a linear process at all. Most of all I liked the opportunity to edit the year and frame it in a way that is life-affirming and makes me feel proud. I least liked the fact that it wouldn't bloody publish on Facebook despite having three tries, so in the end I gave up and took a screen snapshot. Well. You can't have it all, can you?

Blood not money

2010-12-06T02:32:00.000-08:00

Got blood? I'm taking part in a Cancer Research trial called Project Icicle led by local oncologist Duncan Wheatley — and they're looking for women nationwide who don't have experience of breast cancer themselves or in the immediate family (sister/mum/daughter).

Instead of asking for money, researchers are asking for a couple of eggcups-full of the red stuff to help investigate the genetics of DCIS, the early form of breast cancer I had. I filled an eggcup with water so I can confidently add it's a small amount. Honest. All you have to do is mention Icicle to your GP or email Kelly Kohut at Kelly.Kohut@bartsandthelondon.nhs.uk.

I was on the radio this morning talking about my experience and how the Icicle findings could help spare women the anxiety of a cancer diagnosis in the future. That's what your eggcups can do.

Click here to find out more about the project (about an hour and a half in to the breakfast show; go to 1:32.31). The feature is about 5 minutes long.

Source: Here at Flickr.com

Thanks, rookie doctors

2010-11-20T15:23:00.000-08:00

Cor. It's amazing what you can find out on the web, innit? On my quest to find out more about suturing techniques and things to practice on, I found some random suggestions for materials to try on an old student doctor forum:

Banana peels
Grapes
Latex glove
Pig's feet
Chicken breasts
Thick-sliced deli turkey
Graph paper
Your thighs (yikes)

Elsewhere, Rookie Doctor was rather useful. He led me here, to the Boston University School of Medicine's suturing basics. There's a rather lovely page full of new words for me to learn and pictures of old surgical teaching tools. I'm particularly liking Wound Man:

Source: Guild of St Michael/University of Chicago

Nice.

This had me in stitches

2010-11-19T01:03:00.000-08:00

Fantastic! Found a video that shows how to do subcuticular suturing, which I believe is the technique Mr A used to suture my back-skin areola to the breast-skin envelope after mastectomy and LD reconstruction. The stitches are hidden under the skin for cosmetic reasons — to minimise scarring on the new breast. I'm in a quest now to find a suitable replacement fabric for skin to show people how it's done — I know from experience that fuzzy felt, sponge balls and orange peel don't work.

As luck would have it, I'm doing an orange surgery workshop on 13th December, and the Royal College of Surgeons is interested in meeting both me and Mr A and doing a write-up on our collaboration. I've asked if they wouldn't mind bringing me one of their fake arms to work on. A bit of a cheek, I know, but I've been to their gaff and they've got all sorts of interesting bits and pieces to help teach suturing to novices, without using, y'know, real skin. I'm hoping I can wheedle a breast out of the arm-maker at one point. Don't be alarmed — this might sound a bit Burke and Hare, but I've found understanding and playing with anatomy and surgical techniques have made me feel a whole lot better about my body. And I'd like to pass that on.

It takes all sorts ...

2010-11-07T14:12:00.000-08:00

It pains me to say it, but I haven't had time for my blog lately and I've been duly uninspired. But ho! Salvation has come in a surgical form, once again, as I headed off to the Hunterian museum at the Royal College of Surgeons during half term and got all excited over a presentation about lancets, leeches and bloodletting, surrounded by skeletons and carefully-preserved wobbly bits in jars. I'm not a bloodthirsty sort, honest, just strangely hooked on understanding the craft of surgery (in my own way) — and now, I'm also intrigued by the history and cultural perceptions of surgery. Oh, and also the people who are interested in it too — such as artists and historians, as well as the surgeons.

Did you know that the medieval surgeon was also a barber? I didn't. Seems they had all the tools at hand to snip anything away, from barnets to limbs. They were very useful on the battlefield, helping wounded soldiers (or not). It took a good few years before surgery broke away from hairdressing once and for all, although the surgeons didn't mind the barbers offering the odd bloodletting therapy, like. I don't remember exactly, but apparently the barber pole's red stripe represents bloodletting, and the white represents a knowledge of anatomy; teaching physicians would lean over a cadaver waving a white wand at various body parts. Eurgh. Fast forward to me learning anatomy with a colouring book.

Anyway, one of the intriguing elements of the presentation was the historical interpreter, Rory McCreadie. I'm not sure whether that's his real name or not. He was dressed from head to toe in seventeenth-century barber-surgeon togs, and his wife was there too — also wearing a costume. She sat and sewed while Rory explained his array of gruesome instruments. He role-played a finger amputation on a young lad, followed up with vivid analogies of rotting fruit as gangrene set in and then, an amputation at the elbow with what looked like a rusty hand-held scythe. Eeeee. Turns out the instruments were reproductions (although the leeches were real). Rory and his wife are members of the Civil War Society — I think I've got that right. Rory is also a hairdresser, and he explains his sideline as an "interest in the history of my trade." I imagined them re-enacting wars and doing seventeenth-century haircuts on their Civil War Society friends. I wonder if they do parties?

Source: rcseng.co.uk

Mental health wobble: Notes and swear words from hibernation

2010-10-24T06:21:00.000-07:00

I'm fed up of accentuating the positive and I have spent the last week mostly in bed, feeling duly miserable. My doctor diagnosed me with nervous exhaustion last week. In retrospect I should have known the warning signs. I went to the Mermaid to the breast cancer support group and had an anxiety attack. We were cutting up photographs and making a display of all the good stuff women have been doing together through Made for Life. The effect of seeing all the photos, and thinking about all the women in the room and their breast cancer, made me feel depressed, sad and lonely, all at once. Minutes before, I'd felt happy to be part of the group. Now I felt cut up. And then I noticed that someone had printed out a photo of me at one of the Made for Life events, but the photo had misprinted with another one over the top of it. It illustrated exactly how I felt: Mixed up and confused.

Then I had a day when things came to a standstill and I couldn't do my job. I couldn't communicate properly at all. It was a bit of a shock. I have been believing that I haven't really "suffered" anything; my cancer was caught early, it was in situ and therefore trapped in the milk ducts, there was no invasion. So I've got on with my life. I've got a full-time job, I've been looking after my children, and I've been writing my happy happy joy joy blog; I've been helping the Mermaid centre raise breast cancer awareness, recruited people for a cancer research trial, and done orange surgery workshops with NHS staff as well as patients. Now I'm bloody knackered. And I think, most upsettingly for me, I haven't come to terms with losing my breast at all. Nope! Shit. I realise it is a continual battle. Just like it was when my daughter died: you may never come to terms with this stuff. Now I remember, you don't have to come to terms with it. But you do have to learn to live with it, at least, to be able to continue to function. I thought I had learned; but I'm still only part-way there. Damn and double damn.

And now I suppose I had better get up.

Made for Life: Having a ball

2010-10-10T14:47:00.000-07:00

This is us at the Made for Life ball last Friday night. I was scurrying around town at the last minute at 3 o'clock on Friday afternoon, having just read the dress code on the tickets: Gah! It was a black tie affair! Dan wouldn't get away with a "nutty professor" bow tie, which had been the original plan, seeing as he is a nutty professor. But the Girl Guide Association came to the rescue. It turned out that Daisy's Brownie leader works at Moss Bros, and so Brown Owl went and found me a suit and all the trimmings. The trimmings were a minor problem prior to leaving for the ball, as Dan couldn't figure out how to do up the cummerbund or the bow tie. We ended up fixing the cummerbund, but doing some jiggery pokery with the bow tie and almost strangling the old man in the process.

It was worth it. Look! Chandeliers and everything!

Amanda Barlow's Made for Life foundation was the reason for the flurry. For the last few years, Amanda (of Budock Vean and Spezia Organics) has been running 'Made for Life' events, at which local women who've been diagnosed with breast cancer can be pampered and have a bit of respite from the world. She announced at the ball that after many, many months (and lots of paperwork), Made for Life is now a registered charity. They are looking to build a dedicated centre in Cornwall — similar to the concept behind Maggie's Cancer Caring Centres, which offer an array of services and stress-relieving therapies under one (in Maggie's case, spectacular) roof. The Made for Life centre will give people with cancer a nurturing environment and an array of activities and resources: What a brilliant idea. Even better: involving their family and friends in the experience as well. And I hope, now that it's an official charity, the Made for Life peeps will consider an annual Made for Life ball to celebrate. It was lovely.

I like it on the stairs ...

2010-10-07T14:15:00.000-07:00

I got a message from a friend on Facebook a few days ago asking me to post something saucy in my status bar in aid of Breast Cancer awareness month:

Remember the game last year about what color bra you were wearing at the moment? The purpose was to increase awareness of October Breast Cancer Awareness month. It was a tremendous success and we had men wondering for days what was with the colors and it made it to the news. This year's game has to do with your handbag/purse, where we put our handbag the moment we get home for example "I like it on the couch", "I like it on the kitchen counter", "I like it on the dresser" well u get the idea. Just put your answer as your status with nothing more than that and cut n paste this message and forward to all your FB female friends to their inbox. The bra game made it to the news. Let's see how powerful we women really are!!!

It was reported in the Telegraph today, and I must agree with some commentators that it made more sense for breast cancer awareness when it was a statement about a bra, rather than your handbag. Someone moaned a bit about the fact that there was no concrete connection to advice or help, that it was beautifully attention-grabbing but a bit of a waste.

Got to agree there too, but the seed has been sown and perhaps someone like Cancer Research UK can play with something like it next year (or why wait until October? Look at what Breakthrough Breast Cancer are doing: they've just launched an iPhone app, iBreastCheck, to get women regularly checking their breasts!) Just using social networks in an engaging way has such enormous power to both spread the word and put information at people's fingertips - and not just any old information, the best and most reliable information. Hurrah for hyperlinks, I say!

I was a little peturbed, however, by the effect of the campaign on someone in my family. One of my cousins made the comment: "I like it anywhere". Whether he meant his bra or his handbag, I really cannot say.

Source: Flickr.com

You didn't hear it from me

2010-09-23T15:15:00.000-07:00

This certificate is the proof that I was an honorary NHS groupie for the day yesterday. I went to the annual South West Breast Screening Education Day in Taunton. I gave a couple of presentations about what it's like to be a DCIS patient and go through mastectomy and reconstruction. The whole day was amazing. Regrettably, I can't tell you what else happened there because then you would know too much and it could be dangerous. I certainly feel quite dangerous at the minute. Especially because the education day comes with 4 so-called CPD credits from the Royal College of Physicians. I don't know what it means, but it sounds like a disease to me.

Help. I've got CPD.

Food for thought

2010-09-17T15:15:00.000-07:00

My friend R gave me the most wonderful book for my birthday: Cutting for Stone, by Abraham Verghese. It intrigued me from the very beginning, partly because it's so eloquent, but mostly because it is written from the perspective of a surgeon (and they intrigue me even more than language at this point in my life.) I haven't finished the book yet, but I want to share the following paragraph:

Yes! A treasure trove of words! That's what you find in medicine. Take the food metaphors we use to describe disease: the nutmeg liver, the sago spleen, the anchovy sauce sputum, or currant jelly stools. Why, if you consider just fruits alone you have the strawberry tongue of scarlet fever, which the next day becomes raspberry tongue. Or how about the strawberry angioma, the watermelon stomach, the apple core lesion of cancer, the peau d'orange appearance of breast cancer ... and that's just fruits! Don't get me started on the nonvegetarian stuff!

The descriptions are so vivid, they make the diseases sound strangely beautiful. Or perhaps it's the fascination, the act of looking closely, that I find beautiful. Of course, the phrase, "the peau d'orange appearance of breast cancer" — evoking dimpling of the skin — gave me a jolt, given my orange surgery metaphor. I texted Mr A to see if he'd heard of the "peau d'orange" expression. (He has.) It reminded me also of a conversation we had some time ago about food, medicine and belief.

Mr A advised the use of manuka honey to heal a large, necrotic hole in my newly reconstructed breast, and it was an extraordinary experience to watch the healing process. (Actually, it was an extraordinary experience trying to get manuka honey from the NHS on prescription. But I digress.) I've since incorporated manuka honey into my diet, inspired by the conversation we had.

"Imagine," he said, "If the honey can work wonders on the outside, what it can do to your inside." He announced he was a Muslim; tit for tat, I said I was a Jew. We talked about miraculous foods in the Qu'ran: dates, he thought, were one of four magical foods that get a special mention, alongside honey. But he couldn't remember the stories, let alone the remaining foods, and said he would consult a learned friend and get back to me. (He did. More soon.)

Meanwhile, I've been shopping. And bought some dates.

(But not here. I went to Sainsbury's.)

Image by Zaphgod at Flickr.com

Rock on, OSNA!

2010-09-16T01:20:00.000-07:00

MY SISTER'S LYMPH NODES ARE NEGATIVE AND THE MARGINS LOOK GOOD TOO!!!!!

A prayer, sort of

2010-09-16T00:31:00.000-07:00

Family Fortunes

2010-09-15T14:57:00.000-07:00

As usual when I hit bad news, a song (sometimes an inappropriate one) comes into my head. The theme tune from our '70s Saturday night favourite Family Fortunes is buzzing around it at the moment as a backdrop to yet another shocker. Last week we found out that one of my sisters has breast cancer. A lump the size of a marble, hidden behind the nipple, was found during routine breast screening. She rang me from where she lives in Australia: "Um, it's not like really terrible or anything, but um, I have breast cancer."

She's having surgery tomorrow — or today, depending on your location. She's staring it in the face right now. I rang her a moment ago; it's 10.40 pm here but over there it's gone half past seven in the morning. She just went out of the front door to have a sentinel node biopsy and lumpectomy, and when she comes round, she will find out via OSNA if there is any disease in the lymph nodes. At least I think that's right — it's so hard for a patient to remember what the surgeon tells you when you're trying to process the news. We've had a few garbled conversations with both of us trying to understand it all. All I know at the moment is the doctors think they have found the disease early. But it doesn't matter what they say until the results are in. Nothing stokes anxiety like the unknown.

As it happens, OSNA has just come to the South West — Mr A did his first one last week to much fanfare on, um, Radio Cornwall (that's a story for another day). I asked him to clarify what OSNA is when I heard my sister's news and he emailed me: "It stands for one step nucleic acid amplification. Allows intra-operative analysis of the node and if it is positive all the nodes are cleared. If it's negative then the patient is told on recovering from anaesthesia. This prevents a second surgery for some patients (approximately 30%)." So when I wake up in the morning, we will find out if the cancer has begun to move.

P.S. If you've read more recent posts, you'll know now that we have had good news. I feel I can post this clip from Family Fortunes now, with Bob Monkhouse for you to enjoy. It's simply marvellous.

Meat: The latissimus dorsi, up close and personal

2010-09-15T00:34:00.000-07:00

A couple of months ago, Mr A took a video into the operating theatre, and with the patient's permission, recorded key moments in the midst of LD flap reconstruction. I tried to upload 30 seconds of the four-hour surgery into blogger, but back in July it didn't work. I tried again today and — wowser! — it worked. And a good thing too; as I prepare my workshop for the pros, I need to remind myself of some of the surgery's spectacular details so that I don't end up looking like a thicko at the conference.

***GORY BITS ALERT. DON'T READ ON IF YOU'RE A WOBBLY SORT***

If you don't look too hard, the image in the video's initial frame looks like someone's having a Cornish pasty while they work. But what you're seeing is in fact an ellipse-shaped piece of skin, attached to the LD muscle, which has been harvested — separated from the body — with the exception of a large blood vessel which, like an umbilical cord, keeps the muscle alive. The surgeons are holding the muscle out like a picnic blanket. Or if you're Lady Gaga, like a skirt steak (check out her meat wardrobe here. Tasteful).

The muscle and skin are bundled into the body and tucked safely under the arm for safekeeping while the back is sewn up. That's where this video ends. Then the patient is turned over so that the surgeons can tunnel the muscle under the armpit and through to the front of the body, where they begin the second half of the reconstruction: shaping the breast and creating the areola with the ellipse of skin. I'm not sure if Mr A captured the second part of the surgery for me. I need to chase that up. Meanwhile, without further ado: Meet the LD.

Getting technical

2010-09-13T10:38:00.000-07:00

I'm stocking up on oranges again. I've been asked to give a couple of workshops to breast screening health professionals at a regional education day at the end of September. Like, y'know, the patient perspective. I'm excited. And scared. I've only got 20 minutes per workshop to show my LD surgery skills on an orange and explain why this fruity equivalent to stitch and bitch could be worthwhile (beyond me and my friends having fun sculpting oranges and drinking Pimm's. Which is very worthwhile indeed).

I'm sorry to say, I won't be writing about the contents of the day because the organiser asked me not to: "The day is very much a forum of ideas amongst those working within the field of breast cancer and cancer screening (and) I will have to ask you to sign a comprehensive confidentiality agreement." Which makes me feel very privileged and important. And actually, I'm not all that sorry, because it means I can engage fully in the day and not feel guilty at counting the number of moustaches in the room if it gets a bit, y'know, technical.

Source: Cooking for Geeks at Flickr.com

Born in the shape of a question mark

2010-09-07T23:51:00.000-07:00

When my husband Dan was about eleven, he got into big, big trouble by asking his teacher, who was really getting on his nerves and asking too many questions, whether he was born in the shape of a question mark. It's not just a really cheeky question to throw back at your teacher (and to get you thrown out of the classroom); it's also bizarre, because Dan is one of the shyest men that I know.

I, on the other hand, am not shy, and I know that I was definitely born in the shape of a question mark. I just can't stop asking questions. It's in the blood. And for the first time since I've known Mr A, I felt that my curiosity exasperated him. In a follow-up meeting with nurse J, I realised I had been asking a lot of my consultant, and had started to take for granted the easy relationship we had developed. It's not that I crossed the line exactly — it's the fact that I had started to think that there wasn't one. But — disappointed! — there is.

Image (and quote) from HydrogenPops at Flickr.com

Giant Panty Whisk

2010-09-03T06:10:00.000-07:00

Sculpting Pants with Whisk, by Kelly Stevens

This is, quite possibly, one of my favourite photographs inspired by recent days, with its Mad Men-styled matronliness and culinary slant. Several friends rather like it too. And an additional plus is that, because I shared this image on Facebook, I discovered that my American friend Andrew used to be in a band called "Giant Panty Whisk". Go figure.

Pork chops 'n' porky pants

2010-09-02T13:31:00.000-07:00

Saw J, my fab breast care nurse today. I asked her about my lipo-modelling — fat from my stomach has been used to augment my new breast — and why I have to wear a hang-glider-sized* squeeze-me corset for knickers. Apparently the surgeon has to wrench the fat from your stomach, and the procedure is brutal (a fact that was also discussed at the breast cancer support group last night.) I must have got a medically-approved beating. That explains the bruises, then. No wonder Mr A said he "couldn't" film the operation for me. I asked J about the pants - what difference do they make?

"Well," she said in her matter-of-fact Irish way. "You know the fat in a piece of pork. If you imagine going at it for a while with a pokey thing" (can't remember what she said - stick? skewer? screwdriver?) "you'd get a load of holes in it, wouldn't you? That's what you've got inside your belly — a load of holes that the remaining fat needs to fill. So the tight pants push the stomach down and spread the fat around (it's fluid, you know) — and it fills the holes."

Well! It's amazing what food you can learn from. And, quite by coincidence, we had pork chops for dinner.

*My mother-in-law's so fat, you can make hang-gliders out of her knickers. (Apparently mother-in-law jokes are back. It said so in the Daily Mail, so it must be true. Is this one of Les Dawson's? Answers on a postcard, please.)

The return of the cleavage

2010-09-01T22:31:00.000-07:00

Yesterday I was lying in bed when my three year-old daughter, Lola (also known as The Rooster), came in to regale us with song and dance, as she does every morning. We spend giggly minutes together before we get up. Usually that means the Rooster singing nonsense songs, bouncing on the bed and trying to make us laugh. But sometimes she just wants a big cuddle, and while we were having one of those she asked: "What's that?"

I realised she was pointing down my pyjama top. She's very interested in the rehabilitation of my breasts (she still asks if she can have some milk.) And lo and behold, I looked down at myself and I saw: Cleavage. Today I'm getting my pink donut bandage and assorted dressings changed for the first time since I left hospital, so I will be able to see the progress much better for myself. I don't care what they say — I'm going to look in the mirror for a while before the dressings get put on again. The return of the cleavage! I didn't think I cared.

Oh yeah. And this post has no photograph for a reason.

When it comes to the crotch...

2010-08-27T04:46:00.000-07:00

Dan and I were in the car on the A30 to Penzance when he reached over, squeezed my fleecy knees and said Happy Anniversary. I'd had a wardrobe crisis earlier in the morning, brought on by the big knickers I knew I was going to have to wear post-surgery to keep the stomach together after lipo-modelling. I kept looking at them and thinking how tight they were; I needed something loose and comfortable to wear over them, but what? Everything I looked at promised to make me feel horribly constricted. In the end I kept on my leopard print pyjamas, matching dressing gown and added a pair of gold birkenstocks: think Wilma Flintstone meets the happy wanderer. I even had a knapsack on my back as I walked into St. Michael's. The backpack let the side down a bit — it was covered in dried mud because Dan had put it down in a cesspit at Port Eliot festival without thinking (oh darling! Happy Anniversary!) — but thankfully, my fashion cred was cranked up a notch by the addition of ted stockings and a delightful cotton gown, which on me looked like an NHS maxi dress. I was smokin'.

A nurse took me back to the F ward (I'm not swearing — it really is called F ward), the same one I'd been on six months ago when I had my mastectomy. I remembered the lovely lady who I'd met back in February; she used to work for Bishop Bill, as she called him. She told me stories about retired churchmen with extraordinarily long beards spending their spare time knitting, and about the nuns who used to work at the hospital until relatively recently. It had made me want to explore the history of the convent, the hospital and the nuns; I thought I might write a sort of Hayle equivalent to Jennifer Worth's Call the Midwife, her account of nuns looking after women in London's East End. I've since turned to writing about fruit and female self-esteem, but there's always the nuns on the table for later.

What I had appreciated so much about my stay last time — the people that I met in the hospital — was what held me together this time. I saw my favourite cheeky nurse; the Gruesome Twosome; and smiley Margaret to name a few, and also met some new characters, who told more great stories. I think my favourite is the one about the elderly auntie who used to have a weak bladder in the days when pants-to-the-knee were the norm. She cut holes in the crotch so that she wouldn't have to muck about with too much elastic when she needed a wee. The thought of customised bloomers drying on the line on a windy day is a vivid, if not exactly pleasant, one. I'm going to be drying pants-to-the-chest Victorian undies on the line soon myself. But I will be keeping the crotch intact.

Happy Anniversary - crack open the morphine

2010-08-14T09:40:00.000-07:00

On August 24th, 2010, Dan and I are going to celebrate fourteen years of marriage with a bit of surgery. Sounds a bit kinky? Not half! I'm going to be spending our anniversary with another man, my surgeon, who is surely sharpening up his scalpel as we speak. We made the date some time ago, when I was convinced my back would never heal and needed something to look forward to. I was so miserable at the prospect of having a perpetual hole in my back and a breast marauding under my armpit that I didn't care when the surgery would be; I just needed to know that I'd have my back fixed and my reconstruction completed. Swapping champagne for morphine is neither here nor there when it comes to feeling whole again.

This time around, I'm having several procedures done at the same time, but they are minor compared to the previous round of surgery. I'm having a new nipple, my back tidied, and lipo-filling, which is a technique using fat from the stomach to shape the breast. I've put on around three kilos since my surgery in February, so I've given Mr A permission to take a bit extra if he likes. Actually, I'm lying. I've asked him to take as much as is humanly possible, but he reckons he'll only need about 100 grammes. Bugger. Still, got to be careful, because the body doesn't forget where its tissue truly belongs: if you tend to put weight on in the abdominal area and then move that abdominal fat elsewhere (i.e. a new breast), you need to watch your cup size: I've been told that the breast will get bigger along with my stomach and give me a lop-sided chest. It's a blow because the breast care nurse has encouraged me to eat as much chocolate as I like until the surgery. It's going to be a hard habit to break. Still, there's always the morphine on demand. Can't wait.

Oncoplastic Fruit at Port Eliot

2010-08-04T03:47:00.000-07:00

"The fruity equivalent of stitch and bitch"

The first ever public orange surgery workshop took place at the wonderfully eclectic Port Eliot Festival on 25th July, thanks to the peeps at Profwriting.com. Their programme theme was Write out West: "You might associate Cornwall with painters and pasties, but we're at Port Eliot to showcase our vibrant writing scene..." Well holy smokes I'm blushing, cos that writing scene included me and my blog, y'all!

Look, Profwriting even asked fab illustrator Georgia Sawers
to create a word-swilling cowboy programme

My workshop was code-named Operation Orange. My trusty sidekick was none other than Frances Lambert, a breast care nurse at the Mermaid Centre, Truro. I think she was a bit worried during our run-through that our presentation was going to be a shambles. We were sitting on a bench on the hill playing with our props, which included a silky prosthesis, Pimms, playdoh and skads of oranges. Frances kept asking me what I was going to say and each time I told her something different. The truth is I'm not chronologically-gifted when it comes to storytelling, so I knew I'd be winging it. Thankfully, the rambling went down well.

It was a thrill to find that both those with experience of breast cancer and those without got some wow moments out of the session. A woman who'd already been through mastectomy and was awaiting reconstruction said: "I really enjoyed attending your workshop - it helped me understand what's going to happen to me." She also said her husband would have found the orange surgery workshop reassuring. Which was so cool because the workshop is intended not just for patients but also their friends and families. It's about understanding what's happened to our bodies to help us feel much more in control of the situation, and for loved ones to understand what we have been through so that we can relate to one another. It beats the medical prose in patient literature hands-down for getting information across in a pithy (couldn't resist!) and accessible way. And it's actually fun. (Even if I say so myself - which I can, thanks to eleven years of living in America where it's okay to blow your own trumpet.)

I wondered if people were afraid of coming to the workshop. I had a theory that some people who said they would didn't come because the subject of breast cancer (whether early or advanced) is a big sticky scary mess, and frankly some people would rather not look the subject in the eye when they don't have to. But this workshop isn't about pink-ribboned awareness-raising or tales of extraordinary survivorship. It's the fruity equivalent of stitch and bitch, where we can unpick the breast cancer taboos, talk honestly and openly, and be unafraid to ask questions. Meanwhile, our children can sit by and quietly fashion boobies and animals out of playdoh, or play with puppets.

Two workshop attendees ride the carousel afterwards.
(Puppets lovingly crafted by Daisy and Lola Stevens)

For me, operation orange has turned feeling mutilated into feeling proud of my new breast. I consider it a work of extraordinary craftsmanship, and I see my oncoplastic surgeon as an artist/sculptor creating unique pieces lovingly by hand. As Frances would say (thanks to her interest in neuro-linguistic programming) I have 're-framed' my experience. Whatever, I like the word 're-frame', especially as we 'frame' art that we love. In essence, I think we proved that understanding surgery through orange sculpture - while swilling freshly-squeezed orange juice with Pimms and lemonade in a friendly group - can make both past and even future losses so much easier to bear.

Rough guide to making a nipple

2010-07-06T08:31:00.000-07:00

You will need:

1 Black marker pen
1 Piece of felt (in the absence of fake leatherette to simulate the skin)
1 Pair of scissors
1 Violet braided absorbable vicryl suture (alternatively, a needle and thread will do)

Step 1. Using a marker pen, draw the outline of your home-made nipple on the felt. If your rendition resembles a squashed club with a circle in the middle, you're doing well. This is otherwise known as an aeroplane flap.

Step 2. Cut around all of the outline except the base of the circle in the middle. (You'll have to pretend the sutures aren't there; I had to pull Mr A's work apart to show you this bit.)

Step 3. Hold your aeroplane flap upright. Fold one side-flap behind the circle.

Step 4. Fold the other side-flap behind the circle.

Step 5. Fold the last remaining flap down and suture. (Unfortunately, I don't have the precise suturing instructions on hand and will get back to you on this.)

Step 6. Look, no hands!

The bit where it all comes together

2010-07-04T14:26:00.000-07:00

If you have any doubts about the value of orange pedagogy, watch this. Here are some oncofruit pointers to give you a head start.

The latissimus dorsi (LD), the large muscle in the back which in my case became the basis of my reconstructed breast, is represented by the flesh of half an orange.
The skin (or orange peel) that is to become the new areola is still attached to the LD flap, which has been harvested - cut loose along with the blood vessel - and is ready to be tunnelled under the armpit.
The skin envelope (empty breast/a.k.a. hollowed-out orange), is filled by the LD flap at which point the new breast, complete with back-skin areola, comes into existence.

Three OMGs from Kate prove it's a revelation.

Mastectomy for beginners

2010-07-02T23:40:00.000-07:00

I know it was my idea, but flippin' 'eck. The orange workshop was amazing. I think it has the potential to be a brilliant teaching tool for women who want to understand what happens to their body during oncoplastic surgery. Picture this (or better yet, watch the video):

Mr A goes and blows another of my theories out of the water, which is that once the areola is removed, the skin of the breast is scored like an orange to make flaps that open wide enough so they can get to the tissue. Not so! Instead, the skin is stretched back and held in place by pin thingies. (I think that is the technical term.) Apparently when you do that, you can see the planes inside and easily separate them: layers of tissue, fat, dermis and epidermis. Alum Bay-style stripes of colour come to mind for some peculiar reason.
They don't use a bog-standard scalpel on the breast, other than on the skin when they remove the areola. They use an electric knife of sorts. But not like the one my mum used to carve the roast with briefly in the eighties, obviously. She soon went back to manual. But as far as breasts are concerned, harmonic scalpels are the preferred sort. They vibrate about 5000 times a second or something. You'll have to watch the video eventually, because I probably got that wrong. Good job Mr A likes fact-checking.
Mr A tells stories about breast surgery of different kinds and the various approaches surgeons take. Of course, much of this discussion takes place off camera. Mr A has one way of doing reconstruction; his cohorts have another. And of course, each woman's result is entirely unique. More proof that it's more art than science in my mind.

Frankenstein's monster, me?

2010-07-01T15:13:00.000-07:00

Before you go any further, you should know that this post contains a medically graphic photo of muscle, tissue and skin. I had to look at it regularly, but you don't. (It's all better now, by the way, the tissue and skin having been regenerated with the help of the anti-bacterial wonder-food, manuka honey. It's true; my three year old daughter still thinks I've got honey on my boobs.)

As I said. If you're at all squeamish, please don't look.

*****

Another friend, Nic, who came to the orange mastectomy and reconstruction workshop courtesy of Mr A, has written to me to tell me what she thought of the evening with my surgeon. We've talked about my surgery many times, and more than once she's brought up Frankenstein. (Despite that, we're still friends.)

"As you know I was pretty amazed by the whole evening (thanks to you) and felt honoured to sneak a peek into the world of a surgeon and his orange boobs - witnessing the processes and knowledge behind the knife. I felt a little concerned for the oranges but they were transformed from mere fruits into models of scientific genius. Quite eye popping really. Watching the orange-bodies being moved about and adapted by human hands as though it were living flesh, listening to him explain how they take parts from the back around to the front to make a better version - it all conjured up memories of Frankenstein being made, and I can see how a complex relationship could form between surgeon and patient - almost like the creator and his creation. But this is different. How incredible that a human being can save your life through his knowledge, skill and attention to perfect detail. Humans rock xx"

I'm intrigued by Nic's references to the relationship between creator and creation, surgeon and patient. If there is any analogy, I think it is this. Frankenstein's monster feels abandoned and lonely; he recognises that he isn't like everybody else. I felt lonely, and frankly a little abandoned, after my mastectomy; after it's over, you're on your own and you just have to get on with it. When I looked down at myself after my operation I felt reduced, hurt and ugly. It was made worse by the extensive necrosis that made part of the reconstructed breast turn black. I was unlucky; this was apparently another unusual complication. The dead tissue had to be cut away, and what lay underneath was quite horrifying. Oddly, though, the manuka honey treatment made me feel kind of special (god I'm weird), and I think that, along with my rapport with the nurses and especially Mr. A, got me through.

Even so, it took some time for me to turn that sense of the monstrous around, and it's still a work in progress. The necrosis is completely healed, though my surgery isn't over yet. But as time goes on, the scars fade, and I get closer to the finished breast, I find myself returning to the world feeling whole again. A lot more attractive. And a lot less lonely.

Yeah. What Kate said.

2010-06-24T12:05:00.000-07:00

Last night I emailed my friends and asked what they thought of Monday night's workshop. Did watching a surgeon cutting up oranges help them get a sense of oncoplastic surgery? I got an email back from Kate, who is one of the most curious (in the discovery sense) people that I have ever met. (She also makes wicked cocktails and has been primed for developing an orange-themed drink for next time.)

"The sight of Sheikh's careful fingers slicing delicately through the orange flesh provoked strong feelings of trust in me. His measured explanations, patience and humour brought to life the extraordinary act of reconstructing a part of the body from another part. I wondered about the immense amount of research - decades of it - that stands at the shoulder of every surgeon who does this, guiding the hand that teases apart the layers of skin from fat from flesh. The unimaginable was materialised with an orange and a scalpel in a lounge in an ordinary street.

There are so many parts of myself I don't know the names of. What do I look like on the inside? How long did it take to map the pathways, channels, networks, layers, courses, connections before someone figured out that you can take the muscle from the back but you have to bring a vein with it, a hose bringing the fuel to keep the muscle going in its new habitat?

With any luck my cells will remain well behaved, their recalcitrance held at bay by a heady combination of physiology and luck. But if they muster into a wayward legion of cells that refuse to listen to other cells, that consume without responsibility and grow, heedless of consequences, I hope that someone like Sheikh will be on hand to discipline disorderly conduct at the cellular level."

To me, her response to hearing and watching Mr A talk about mastectomy and reconstruction sounds like poetry, but then I would think that. I'm a walking work of art, after all.

Source: flickr.com

Still life with orange

2010-06-21T14:57:00.000-07:00

Tonight was the orange surgery workshop. We filmed some of it, which will be posted as soon as we can figure out how to upload it, with some additional thoughts about how the workshop went. Some highlights:

Creating a nipple out of orange peel is rather tricky, so we watched Mr A create one out of a scrap of pink felt which I found in my daughters' craft box. As you do.
Suturing a thick orange-peel areola to a skin envelope made out of same? Not going to happen. Think the oranges were possibly too large; satsumas might be better for the stitching part.
Had an amazing 'aha' moment as the back muscle and ellipse of skin (orange flesh with ellipse of peel attached) was inserted into the skin envelope (hollowed out orange with hole in the top and bottom) and created the form of a breast complete with areola, but you had to be there.
The Pimm's was excellent. The samosas weren't bad either.

Executive summary: the evidence reveals that the orange analogy can only go so far. I'm off to get myself another glass of Pimm's, which I hope will help me think of additional, non-food related ways we can get to grips with the craft of the surgeon. In the meantime, I leave you with the artistic remnants of our orange workshop: Still Life with Orange, Pimms...and Pink Felt Nipple.

Thanks to: Mr A, Kate, Mike, Nic, Marie and Lynne. x

Adding a little zest to life

2010-06-09T13:28:00.000-07:00

It's really happening. Mr A is coming to my house so we can have a party with oranges and pretend they are breasts. We're going to make skin envelopes and fashion areolas out of the peel, and he's bringing some sutures and showing me precisely how he stitched me up. The idea of using oranges to explain reconstructive surgery emerged by accident after I blogged about the process of mastectomy and got it wrong. I wrote about scoring an orange, imagining the surgeon creating the flaps of skin in the breast to access the tissue. (You can read that post here.) Being a pernickety, detail-obsessed, surgical sort, Mr A corrected me by slicing oranges to demonstrate precisely what he had done. (Read that old chestnut here.)

I never really understood what happened to my body during surgery until the orange exchange began. Then a whole new world opened up to me. I had been feeling mutilated. Now I feel more like a work of art. The surgeons I met at the Hunterian museum a while ago made me realise that the work of an oncoplastic surgeon is like that of a sculptor; it was at the museum that I discovered "surgery" is derived from the ancient Greek words for hand work. I had a conversation with one of the breast care nurses more recently who talked about the healing intention of the surgeons - and it's a bit bonkers, but it made me think of the Buddhist concept of lovingkindness.

"Lovingkindness, an awkward and somewhat quaint term in English, is the translation of the Pali word metta, which means complete and unrestrained friendliness. The Buddha taught that when the mind is at ease, it is friendly, congenial, well-wishing. The mind at ease likes nearly everybody." (Sylvia Boorstein). It occurred to me that the act of mastectomy wasn't a mutilation, it was an act of kindness - of course it was; I still feel in deep down that Mr A saved my life. I know that's melodramatic really, but without the operation I would likely have been harbouring invasive cancer around my 40th birthday.

Which brings me back to my orange surgery party. You're all invited. Just remember to bring an orange.

Source: Flickr.com

La vie en (knitted) rose

2010-05-30T15:38:00.000-07:00

See those two wantonly pink blooms peeping out from the foliage?

They are knitted prostheses. Their maker, Beryl Tsang, calls them Tit Bits: she had an awful experience trying to find prostheses she was happy with post-mastectomy and so she came up with these. I like the idea of knitting your own breasts, rosy or otherwise, and I'm on the lookout now for more anatomy-inspired knitting and crafts.

The people at Stitch London, the biggest knitting group on the planet (well - definitely London), and arguably the one with the best sense of humour, were at the Hunterian museum a while back at the All Stitched Up event, doing their stuff amongst the anatomical curiosities. Their website and blog feature lots of quirky knitting ideas, including some combining yarn and science: a few of the patterns they link to include frogs, their intestines, and um, lab rats.

Searching the fab yarn-lovers' website ravelry.com for mammary inspiration revealed lots of breast-shaped cushions and more, but what I would really love to find is a pattern that depicts the interior of a breast, especially the ducts and lobules, and their relationship to breast tissue and the lymph nodes. Ooh, or maybe patterns that demonstrate the evolution of DCIS to invasive cancer and make the relationship between the two more clear.

Hmmm. I might be getting ahead of myself here. I think I'd better remind myself how to knit properly. Anyone got a beginner's guide to bed socks?

(Thanks Emily, for continuing to send me inspirational articles, like this one.)

The hole story

2010-05-26T14:09:00.000-07:00

The ol' back wound continues to pervade my blog, and to the squeamish I apologise, but I must report there is both physical and mental progress at last. I hadn't realised, despite lashings of prozac, how very down in the dumps I was feeling about the hole in my back; I was coming undone in more ways than one. A yellowy liquid called serous fluid was leaking from the hole and a jarring infection was skulking around it; Mr A even tried sewing it up again but to no avail. I thought I was going to be wearing a bandage on my back forever. Turns out my wound is in a state of "chronic healing".

A few weeks ago, Ms N, the wonderful tissue viability expert, managed to move things on with her own special brand of voodoo. On closer inspection it was an absorbent dressing called Aquacel. The hole is getting smaller and closing up, there is an entire layer of protective granulation tissue (more on that another time) and now I can start to look forward instead of backward. If only the thing had managed to engage in "primary healing" - i.e., close up nice and neatly after the operation four months ago and leave a less ugly scar - but of course, I managed to be the one in ten who gets this particular brand of chronic complication after LD surgery.

Still, one positive result of the constant need for aftercare has allowed me to make friends with different nurses in various healthcare settings. I'm rather fond of the district nurses at Falmouth hospital's saturday morning dressing clinic, the practice nurses at Trescobeas surgery, Ms N the specialist tissue nurse at Treliske and my breast care nurses at the Mermaid. When it was my husband's birthday, one of my new nurse friends who has a sideline in baked goods made me some cheese straws, a lemon drizzle cake, and a batch of oversized chocolate chip cookies. Unfortunately, I don't have any photographs of them because they were eaten too quickly.

Yum.

Indelible evidence

2010-05-21T02:36:00.000-07:00

Today I stood in front of my full-length mirror for a long time looking at my scars. There's the one on my knee from when I fell over a wonky paving-stone doing the polka on my way to Brownies, the scar from the emergency caesarian that delivered my poor premature baby, the scar on my back where Mr A took the muscle for my breast reconstruction, and finally, several pink sinewy lines circling the place where my areola used to be. Indelible records of significant events in my life. Marks that make me uniquely me.

Now I have to come to terms with a new vision of myself. I feel lucky that I have never had an enviable chest; I used to hide my body away as a teenager. I felt uncomfortable in low-cut tops and never wore them. I've never been proud of my chest in the way that I am about my ability to get on with people, or the fact that I have a reasonably well-functioning brain. I think I might be having a harder time now if they were my favourite body part - you know, like some people say they have good legs, a great bum, or nice boobs. But I still feel the loss. Keenly.

At the Hunterian museum in London last week, I had that loss in mind when I came across a small but poignant exhibit about cancer surgery. There was a photograph of an artwork by Wendy Jobber, a textile artist who had a mastectomy as well as chemotherapy. She used her creativity and humour as a way of coming to terms with what happened to her - she described the process of making the textile as "cathartic". While she was recovering from her surgery she began sketching up ideas, and then while she was going through chemo, she began to stitch it. The picture is a mosaic of lots of different chests, some big, some small, some lop-sided and some with breasts missing. I don't know Wendy, but I like to imagine the comfort she gained through her sewing, and the particular kind of pleasure she must have felt as she made other patients and staff "look and smile". When I looked in the mirror this morning, I could have cried. But then I thought about Wendy's textile, and I felt so much better. I felt acknowledged.

Gore resistance

2010-05-19T13:11:00.000-07:00

I have been trying to think of ways that will make it easier for me to watch a mastectomy and reconstruction in the operating theatre without fainting. Many people have asked why I want to be around gory surgery when I don't have to. Oh, but I do have to. It's not that I want to change careers and train to be a surgeon. It's the fact that I am utterly intrigued by the craftsmanship and dedication (not to mention the cast-iron stomach) that surgery requires. Learning about it is helping me understand exactly what has happened to my body and to accept it not only as a necessary thing, but also a good thing. There is something therapeutic in the effort.

That said, these are my top 10 tips on how to build up one's gore resistance (unless you're vegetarian, in which case, you'll be giving number 6 a miss):

1. Watch Channel 4's Embarrassing Bodies, the one about the reconstructed breasts. (See previous post 'why the gory details matter' to view the video.)

2. Watch a video of a benign brain tumour being removed. Actually it could be a video of any random surgery. They happened to have brain surgery playing next to the (wool) spinning workshop at the Hunterian museum, where I spent last Friday evening. The spinning was a rather appropriate backdrop, I thought.

3. Try out suturing (wound stitching) on a fake limb. (I did that at the Hunterian, too. See previous post 'night at the museum'.)

4. Listen to the bit about mammary glands in 'Handsome Devil' by the Smiths. I have just uploaded it from i-tunes. It's important because, as I've said before, songs come into my head when I'm in crisis and I'm hoping this one might help me out in the operating room.

5. Colour in and study the anatomy of the mammary glands in The Anatomy Colouring Workbook. I might be able to engage in image-transference and pretend I'm looking at the book if I feel queasy.

6. Handle some raw liver and kidney. A bloke from St. John's Ambulance suggested this old chestnut when I was in the Girl Guides learning first aid. It's been about 25 years and I finally have a reason to try it.

7. Watch a video of mastectomy and LD reconstruction in the safety and comfort of home so you can press stop any time you like. Mr A is hoping to get patient permission for filming in early June for me. He says the camera is already set up in the operating room.

8. Invite a surgeon round to your house. Do a mastectomy run-through with an orange, so that you can see what happens to a piece of fruit first, rather than a breast. Mr A has already agreed to do this with my family. The kids are excited.

9. Experiment with a marzipan or playdoh reconstruction. My friend Kate suggested putting layers of the stuff on a doll to replicate skin and muscle to demonstrate how LD flap reconstruction works. You might have to invite a surgeon round for this one as well. Accuracy and all that.

10. Cross your fingers. Probably the most effective strategy of all.

Surgeon evolution

2010-05-19T02:38:00.000-07:00

When I went to the Hunterian museum at the Royal College of Surgeons in London, I spent some time snooping around the hallowed halls and came across these aloof, dusty old gentlemen: important figures of the RCS painted in the style of the old masters, with frowning marble busts keeping guard over them. They were only rendered less intimidating by their presence just outside the loos.

What a fascinating contrast to the approachable, friendly surgeons of today: here's Akan Emin sharing his expertise with a fashion student at the All Stitched Up event last Friday night. She asked him to suture an artificial scar in a cast of a face for a comparative study of surgical techniques and conventional embroidery and stitching. He was very apologetic about the fact that it wouldn't work: "The material was unfortunately very soft (consistency of a cheese like substance) and the sutures would cut through regardless of the suture material and needle or position of the suture that was used." Darn.

The peculiar trauma of DCIS

2010-05-18T05:35:00.000-07:00

This is a long one.

Last week I asked Mr A why he had decided to focus on breast disease and become an oncoplastic surgeon:

"I think the reason was because if you look at all the spectrum of cancers, this is the cancer with challenges at every step. You talk to the person who is affected, which is very difficult. Breaking the news. Because, to me, breast cancer is the only cancer which has both psychological and physical aspects of trauma. Massive trauma. For example, someone who has colo-rectal surgery for cancer, they’ve got trauma from a psychological cause – cancer – you remove part of the bowel, close it, there’s no physical trauma [once it has healed]. Breast...that's what makes you a woman. So there are different aspects of trauma involved. It's a very difficult disease to explain to the patient and to help her cope with it."

This got me thinking. "Breast cancer" itself is such a wide spectrum of disease. With DCIS - "ductal carcinoma in situ" - the word "cancer" comes up when the news you might have it is broken to you, and that's all you hear. You have a biopsy. You have to wait for confirmation of how aggressive and extensive your disease is. The waiting is vile. Then DCIS is diagnosed. You are told you don't have breast cancer, but you are given literature on breast cancer to take away. Then you find that DCIS is sidelined within that. That's somewhat understandable, because medically speaking DCIS is not life-threatening and it is, as yet, non-invasive; it is sitting in the milk ducts, and it's not going anywhere. DCIS itself does not have the ability to spread. But it's not always understandable from a patient perspective. You can't quite let yourself believe you are going to be okay - that would be too easy. If you let yourself believe you're ok, you're tempting fate, and if your DCIS is high grade, it may have turned invasive already. The invasion could be confined to the breast, but it could have gone further. You wait a bit longer to find out. You're losing a breast; maybe both, or you're having lumpectomies with radiation and maybe hormone therapy too. Throw in the removal of some lymph nodes for good measure. You're having treatment for cancer, for god's sake!

This is the peculiar trauma of DCIS. Even after diagnosis, we are still asking ourselves: do we have cancer or don't we? We are told the prognosis is excellent, and still the disease leads to many women feeling catastrophic fear, despite the best efforts of the medical team around us to allay those fears. We hear voices like Martina Navratilova's describing DCIS as their "personal 9/11". I don't blame her; I felt it too, such is the power of the word "cancer". But let's be clear: when DCIS treatment is over, we are not breast cancer survivors. DCIS is not an invasive cancer. It has the potential to become one. It is a local disease (i.e. it is solely in the breast), not a systemic one (i.e. hasn't spread anywhere else in the body.) We have not had to "fight" cancer, because we have, hopefully, prevented it at an early stage of development. Our lives were not, as yet, under threat.

And here is another peculiar aspect of DCIS: the guilt. I know for my part, I have experienced guilt because I "only" had DCIS, but I still received all the care and support that cancer patients with more advanced disease get. I felt guilt that I was offered (and accepted) a lot of support and sympathy from family, friends and beyond, despite the fact that I tried to stress the fact it was "early breast cancer." Above all, I felt guilt that my disease was contained, that I did not have to undergo chemotherapy like many women I knew. Different people described DCIS to me as a "brush" with cancer, "on-the-fence" cancer, or the "good kind of cancer". We should feel good about that, after all, this is fortunate in comparison to finding you have invasive disease, but a lot of DCIS women feel that these descriptions minimise their diagnosis. Why?

We struggle with understanding where we fit in. Luck doesn't feel like the right word to describe a case of DCIS, especially when it's high grade and extensive and you have to lose a breast. Neither is it about 'survivorship' or 'battle', words that are most commonly associated with cancer. In my case, finding my disease was pure chance; being 38, I am not in the NHS breast screening programme, which is how DCIS is usually found among women aged 50 and over; 20% of all new breast cancer patients identified through screening have DCIS whether low, intermediate, or high grade. I went to the doctor because I had a 'feeling' that something was wrong with my breast. It ached; that's all. I didn't even have a lump, but the doctor thought she found one. What if she hadn't? I could have ignored it, like so many women do. It was a peculiar thing to suddenly find myself looking at an x-ray of my breast completely covered in tiny, custard-powder dots - "micro-calcifications" - that turned out to be cancer cells. The lump the doctor thought she had found turned out to be nothing. Those calcifications could so easily have been left unchecked. Within six weeks I had had a mastectomy. It blew my mind when I was told in two years, I would likely have had invasive cancer and would have been given every toxic systemic treatment going.

Because I have spent these last few months trying to come to terms with what's happened by educating myself, I think now, with the right information and approach, that the fear that comes with DCIS could be much better controlled. This could mean being more specific with the nomenclature of invasive versus non-invasive cancer and giving women with DCIS the ability to understand better how it works, and why surgery may be the best thing for them. There's a reason why people say knowledge is power. It gives a feeling of control over something that, in actuality, is beyond our control. There must be better ways to help women cope with the loss of something that has defined us as women and mothers for all of our lives, and to help us come to terms with the question: why did I have to lose a breast if I didn't have breast cancer? We need a new language for what I can only describe as a no man's land - the frightening, unknown territory adjacent to the battlefield.

Night at the museum

2010-05-16T01:52:00.000-07:00

Last Thursday morning, my friend Emily sent me a link to an article in the Guardian about an event she thought I *might* be interested in. Ten minutes later, I had booked a flight the next day to London, with the sole intention of spending the evening at the Royal College of Surgeons. I emailed Perri Lewis, the article's author, to ask if she would meet me. I danced around the room in my dressing gown when she replied to say yes.

Perri described "All Stitched Up" as "an event at the Hunterian museum in London where medical professionals and knitters are being brought together to swap their stitching skills." In essence, it was a workshop in craftsmanship of all kinds, including knitting, weaving, spinning and, the reason I was there, surgical suturing. The Hunterian was utterly absorbing: row upon row of skulls of various types, graphic videos of surgeons at work, cabinets of curiosities winking at me from their formaldehyde.

My night at the museum couldn't have been more timely: up until then, I had been writing about mastectomy and reconstruction using oranges as an educational tool. Along came an event which filled my mind with a wealth of analogous possibilities. I was particularly struck by this: "surgery, derived from the Greek words for 'hand-work', originally described the manual care of injury and disease." Perri introduced me to Akan Emin, the surgeon and research fellow she interviewed in her article, and he made me realise my oncoplastic surgeon is not only a doctor. He is a sculptor with an incredible eye for shape and proportion.

The combination of traditional handicrafts and science that All Stitched Up provided made total sense. I am passionate about translating the medical experience - and mine in particular, of course - into one that is more friendly, accessible and informative for women. I want to explore the ways I could help other women come to terms with what happens to their bodies during and after breast cancer surgery. All Stitched Up confirmed to me that it is doable in creative, surprising and inspiring ways. I can't wait to get started.

Thank you to the Hunterian for giving me permission to take these photographs.

Are you taking the pith?

2010-05-14T03:40:00.000-07:00

Mr A has finished the fruit sculptures he promised me, but we had a misunderstanding. I was expecting a sculpture with incisions in the skin of the orange to show how they open the breast up to remove the tissue. However, last night he texted me two photographs of oranges to help explain more clearly how an areola is created during skin-sparing mastectomy and latissimus dorsi reconstruction.

This is the perfect strategy for beginners as far as I'm concerned. Think of the educational possibilities the surgeon and the orange could provide me with! I'm far less squeamish about seeing the peel shaved off an orange vs. the epidermis shaved off somebody's back muscle, although I do hope to get around to watching the latter sooner or later. In the meantime, I have commissioned the artist to make me a skin envelope out of an orange for a future date.

So, how is an areola made again? An ellipse is drawn on the patient's back, near the centre of the LD muscle. The surgeon cuts along the dotted lines, and separates the muscle underneath from all of the skin except that of the ellipse. Mr A says to consider the white tissue as LD muscle and the orange as the ellipse of skin remaining on the back. The circle, marked in the middle, is the future areola.

Fig. 1.

The LD muscle is then swung under the armpit, ellipse of skin still in place, and brought around to the front of the body to form the basis of the new breast. The skin around the areola-to-be is carefully trimmed: skin has two layers, and in order to maximise the volume in the new breast, the surgeon wants to leave as much behind as he can. But he can't bury the epidermis, because it wouldn't heal. So he shaves the superficial layer of skin around the circle, the top layer called the epidermis, and leaves the dermis, the second layer, behind.

Fig. 2.

The muscle (the white tissue in the picture, remember?) is set in the skin envelope (the breast is ready to be refilled after having had the inside removed). The shaved bit of the ellipse is buried along with the muscle, so that only a circle of skin is left exposed: the new areola. I believe it's at this point that the surgeon reaches for his sewing kit, so stay tuned for your how-to guide on suturing skills: specifically, how to neatly sew an areola.

On medical accuracy

2010-05-12T01:02:00.000-07:00

Such is my relationship with Mr A that he is willing to read my blog on a regular basis. He sends me emails pointing out which medical concepts I have fluffed up or misunderstood and then I come back to edit, rewrite or post anew.

This morning I got an email from him because he was troubled about the accuracy of the orange-scoring analogy. Okay, so I might have exaggerated it - I've only got two or three ray-shaped scars on my new breast (it's unclear for reasons I shall expand upon in the future). I suspect Mr A's problem is the photo of the orange I've featured has many more flaps cut into it than my skin had.

Now you might think at this point it is time to give up on the orange analogy. But Mr A is willing to work with me here:

"...orange peel needs to be modified. Idea is fantastic but tiny bit of change and I will try to do this for you tomorrow as I need to go buy an orange :)"

I can't wait to see what he comes up with. Who'd have thought I'd have my surgeon making me fruit sculptures in the name of medical accuracy?

Holey Moley: Part Two

2010-05-10T15:23:00.000-07:00

Cripes a'mighty! So my theory about the hole was fairly accurate except the bit about how the circular piece of skin got from back to front to make an areola. I literally imagined it as a skin patch being cut from the back and plonked on top of the new breast as a final touch. Instead, an ellipse-shaped piece of skin is still attached to the back muscle as it's swung around under the armpit. The reason it's a fairly large ellipse is to give access to the muscle.

Once around the front as it were, the surgeon shaves the excess skin from the ends of the ellipse to make a circle, replaces the orange peel-like flaps of breast skin over the top of the muscle so that it meets the new areola, and stitches it all together at that point. (See my previous post on the melon spoon myth for more food/breast analogies.) I have to say I'm in awe but also slightly perplexed at the notion that someone could actually enjoy slicing another human being like an orange, but there you go. Mr A loves what he does. Surgeons eh?

Source: flickr.com

Why the gory details matter

2010-05-09T12:08:00.002-07:00

I thought I might risk turning people off by posting a picture of my back wound on my blog, but then my friend Becky told me to watch Embarrassing Bodies. Blimey! I love Channel 4's disclaimer: "This video contains explicit medical imagery". Somehow that is more arresting than their parallel warning, "nudity in a medical context". It makes me feel better about being explicit about my surgery - it's important to me to share that experience openly and honestly. This is why:

It helps me come to terms with the facts.
I like saying the things people want to ask me about, but are too polite to; conversely, I like saying the things people don't want to hear as well.
It's payback for all those times when I had to listen to other people's boring work stories/birth stories/poo stories/funny things that happened and you should have been there stories/etc.

I'm going to use the Embarrassing Bodies series to prepare myself for my next task: watching a sentinel node biopsy, mastectomy and LD reconstruction, the surgeries I had, live in theatre. My friends think I'm bonkers, but I'm absolutely fascinated, and I really want to stand and watch my surgeon, Mr A, at work. (Although sitting may be better. In truth, I shall probably be feeling quite sick.) He's going to video an operation for me to watch at home so I can decide to opt out of watching the real thing if I want to. Before that happens, I'm also going to prepare myself by editing an earlier post, in which I wrote "etc." instead of "nipple" because it felt rude.

Holey Moley: Part One

2010-05-09T09:36:00.000-07:00

At long last, I think the hole in my back is starting to heal properly. People have been asking me why, if I've had a mastectomy, I have a hole in my back, so I shall explain. Avert your eyes if you're squeamish about these things, because I'm going to include a photograph of it. Mmmwwahahahaha! (I can't deny it gives me pleasure to share the gory details. We shall investigate why another time.)

Although I had a skin-sparing mastectomy, I was unable to keep the areola etc.* because they contained the ends of the milk ducts (in which the cancer cells were sitting). However, because of the very fact that the cancer cells were contained in the milk ducts, I was able to have reconstruction at the same time as the mastectomy. I didn't want to have implants - they have to be replaced every ten years or so. I wanted something permanent and more natural (i.e. something that will realistically droop!), so the new breast took shape using muscle from my back. When the muscle was in place, they patched up the areola with a circular piece of skin taken from the back as well. It's my theory that the skin graft is to blame for the hole.

Now skin is really stretchy (the lycra of the body, if you will) and I am sure Mr A sewed it up using his best blanket stitch. (Ok, I made that up, but it reminds me to ask him how they do it.) But because of all the stress and tension on that area as I began to use my muscles again - carrying children, awkwardly trying to shoehorn them in and out of car seats, weeding the garden, and so on - the hole opened up and started oozing. And it hasn't stopped. Mr A tried to sew it back together. It opened up again. Over three months later, it is still oozing, and now, joy of joys, it is infected. I'm on antibiotics now though, and the lovely tissue viability consultant and Mr A are due to take another look tomorrow. Thankfully, I think the wound is drying up. I'm on the home stretch. What a relief.

There's a hole in my back, dear Liza, a hole.

*Nipple. See post above for context.

The oncoplastic gods

2010-04-30T08:46:00.000-07:00

I just came back from seeing the tissue viability consultant (confusing title - nice lady) and had a phone call. It was my oncoplastic surgeon, Mr A. After three months, I'm still having a few complications related to my mastectomy and reconstruction. Past highlights include a blood transfusion (five pints worth, thank you blood donors) and a necrotic breast (from which a giant gobstopper of dead tissue had to be removed and muscle/skin regrown). Now I have a hole in my back that refuses to heal. Mr A was sitting in a cafe in Harrods, treating himself during some rare time off, but he wanted to know how my meeting with the tissue consultant went.

Can we really be talking about the NHS? Over the last three months, every time I have had a worry or a question, I've been able to text Mr A directly. And he always, always texts me back, sometimes immediately. I imagine him about to go into theatre with the team, his phone beeping with my text and him saying "ooh, hold on a sec, it's Kelly, won't be a mo!" Well. Of course that doesn't happen. But the thought of being important to my surgeon, who makes all the big decisions about my care, is a really comforting one. And I know that all of the surgeons at the Mermaid care deeply about their patients, and vice-versa. "They're gods, aren't they?" said M, a lovely ward housekeeper, when I was in hospital. All of the ladies agreed between mouthfuls of lukewarm shepherd's pie. M went on to regale us with a story about a woman who'd had the name of both her surgeon and oncologist tattooed at the base of her spine. We cooed in admiration and wonder.

So, despite sitting in Harrods eating mango cheesecake (and definitely not shepherd's pie), Mr A rang me, like any friend would, to ask me how I was doing. It's heartwarming. I feel I must honour and celebrate you, Mr A, but to make sure you don't get a big head, here is my final homage: a card I received from my friend Rach while I was recovering from surgery. She drew arrows pointing to our husbands, but there is also one (second from left) that says "this is your surgeon". I laughed until my new breast hurt.

High anxiety, you win

2010-04-30T00:59:00.000-07:00

When I was waiting for my first round of results, Mel Brooks would pop into my head from time to time with High Anxiety. Songs often come into my mind when I'm having a crisis. Fortunately this one would make me laugh, which was a welcome reprieve during a fear-ridden time. As I mull over different aspects of DCIS, I'm trying to figure out how to talk about that engulfing feeling of anxiety - because when people have DCIS, they often feel so much fear (as I did), despite being told that it may never turn into invasive cancer. Martina Navratilova described her DCIS diagnosis as her "personal 9/11", which shows how evocative that fear can be.

The difficulty is exactly this: it may never turn into invasive cancer. But it might. People are enduring mastectomies, lumpectomies and radiation, hormone therapy - just in case. Articles about over-treatment abound, and yet few are discussing the ramifications of under-treating DCIS. We still don't know which cases of DCIS are going to turn into invasive cancer, or when. Surely a proactive approach is better than waiting until even more aggressive therapies like chemo are needed or, heaven forbid, when it is potentially too late? The act of waiting takes its toll. Not knowing what you are dealing with is a mind-fuck. Sorry, but I can't think of a better word to describe the turmoil. All very well for researchers to say don't treat the disease unnecessarily because the statistics are on our side, but what of the anxiety?

How to prepare for a mammogram

2010-04-29T11:06:00.000-07:00

A friend sent me this advice regarding mammograms.

Many women are afraid of their first mammogram, but there is no need to worry. By taking a few minutes each day for a week preceding the exam and doing the following exercises, you will be totally prepared for the test and best of all, you can do these simple exercises right in and around your home.

EXERCISE ONE:

Open your refrigerator door and insert one breast in door. Shut the door as hard as possible and lean on the door for good measure. Hold that position for five seconds. Repeat again in case the first time wasn't effective enough.

EXERCISE TWO:

Visit your garage at 3AM when the temperature of the cement floor is just perfect. Take off all your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat with the other breast.

EXERCISE THREE:

Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Smash the bookends together as hard as you can. Set up an appointment with the stranger to meet next year and do it again.

You are now totally prepared.

(Thanks, Lindsay.)

The Cornish Mermaid roadshow

2010-04-29T02:32:00.000-07:00

I wouldn't want to holiday in one, but the other day I walked past the latest in Cornish fancy caravans - a new breast screening unit - and it made me glad. It was sparkly NHS-blue and white, and proclaimed its ability to bring "care closer to your home". It was sitting outside the Mermaid Centre, Cornwall's wonderful breast screening clinic.

I like the idea of the Mermaid Roadshow. Instead of traipsing in to Truro, sometimes on rural buses that turn a half hour journey into three, women will be able to have their mammograms (and results) on their doorstep. I hope they remember to take the tea urn and the custard creams that we get at the Mermaid. Music would be good too - when I went for my first mammogram, the music ranged from Ella Fitzgerald to Neil Diamond. It took my mind off things. I suppose it would be a bit much to expect them to install an aquarium and a few paintings here and there. Oh well. What the roadshow's got that the Mermaid hasn't is proximity to your bed: you'll be able to leave the screening unit and know that in a relatively shorter time you can roll into bed and throw the covers over your head, leaving Neil Diamond, Ella Fitzgerald and the custard creams behind you.

The melon spoon myth

2010-04-26T01:09:00.000-07:00

I have to hold my hands up in the air and admit to perpetuating the Melon Spoon Myth. Before my mastectomy and reconstruction, I had tried to make sense of the oncoplastic jargon in my breast surgery handbook but to no avail. Because I knew the tissue in my breast had been removed via my areola (TMI? Leave now), I invented my own theory: they must have scooped it out using a melon spoon. Once again, my surgeon has put me straight.

Apparently the skin is so amazingly stretchy that, yes, in my case they cut out the areola, but then they make flaps in the skin (think peeling an orange with a nice sharp knife) and peel it back to make a sizeable hole so they can easily cut the tissue away from the breast wall. I had what’s known in the trade as an extended LD flap reconstruction. Apparently LD stands for the latissimus dorsi (back) muscle that's used to replace the old breast tissue. Flap is the key word here though: I know because my surgeon drew me a picture on a paper towel.

I didn’t want any silicon or foreign objects to form my new breast, which is why I opted for using my own raw materials. During my surgery, they cut into my back and wrestled out my latissimus dorsi, swung it under my armpit using the blood vessels as a pivot and – ta da! – my new breast was born. It might have been a bit more complicated than that. But at least they didn’t scoop up the back muscle with the melon spoon and squish it back through the tiny hole of an areola, as I had imagined they did. Phew.

DCIS by tweet

2010-04-25T04:47:00.000-07:00

I started documenting my experience with DCIS on Twitter in January this year. It was good for a while: when my brain was like jelly, I could just about manage 140 characters to nail what was important to me at the time. Now I'm ready to start writing about it in full, I've decided to bring the DCIS experience to my blog, and keep my tweeting DCIS-free. Of course, my experience is far from over: I look down at my breast today and it's not pretty; I see an angry, red, scar-ridden chest and, while I feel fortunate to have had my particular shade of breast disease caught early, I struggle with feeling grateful when I look at it. I thought I'd share those diary tweets here, because they show an emotional transition, even in those few entries, and it's important to me to to capture the emotional side of DCIS in the article I'm researching.

11:14 AM Jan 20th via web
Face like clay. Red and grey stripes from the neck down. 3 red fleshy buttons on my chest. Radioactive blue pee. Lymph node culling.

9:29 AM Jan 25th via web
Going to take my bandages to the practice nurse so she can inspect my lymph surgery wound and re-dress it. This is the life!

11:17 AM Jan 25th via web
I love the NHS. Got co-codamol and gastro protective tabs & a pre-op blood test to check for infection. Wouldn't have been better in the US.

8:23 PM Jan 26th via web
Notes from a DCIS patient #3: Lovely lump the size of a ping-pong ball under my arm. Senoma? Seroma? Sedona? Hmm - no, that's Arizona.

10:33 PM Feb 6th via web
Notes from a mastectomy patient #4: Tangerine Dream: the name of the cloth bag in which I carry my blue plastic blood-draining concertina.

8:52 AM Feb 17th via web
Notes from a mastectomy patient #5: swapping mobile numbers with your oncoplastic surgeon exacerbates the Florence Nightingale effect.

9:36 PM Feb 17th via web
Mastectomy Notes #6: strange to see a scalpel coming towards your necrotic breast and feel - nothing, despite the enormous hole left behind.

1:05 AM Feb 18th via web
Mastectomy Notes#7: Shouldn't have looked up my breast necrosis on wikipedia. Thankfully, the therapy involves manuka honey, not maggots.

4:21 PM Feb 27th via web
Mastectomy Notes #8: Busy persuading pharmacists that manuka honey is prescribable via a call to the British Pharmacalogical Society.

10:25 PM Mar 27th via web
Mastectomy Notes #9: It ain't over till the surgeon sings.

9:04 AM Mar 28th via web
Mastectomy Notes #10: Sometimes the twee pink grates, but no-one can say it doesn't do its job: http://bit.ly/ci05ZU (Thanks #aboutthegirl)

11:27 AM Mar 28th via web
Mastectomy Notes #11: What do men with breast cancer think of the pink ribbon?

7:06 PM Apr 13th via web
Mastectomy Notes #12: Two months in, I'm starting to feel the trauma - a bit like getting sensation back in the skin, only it's my brain.

9:21 AM Apr 24th via web
More Mastectomy Notes, #13: as the dressings come off, there's no denying the facts. Having a rebuilt breast is emotionally weird.

31 minutes ago via web
Degrees of separation are required. Notes on breast cancer will be found here: http://kellysparalleluniverse.blogspot.com. Culture notes stay here. (http://twitter.com/kellyincornwall)

Ready to pick over the breast cancer minefield?

2010-04-24T17:48:00.000-07:00

Here we are, four months or so since my last post. I am writing an article about my DCIS, because I think there are important things to say about it that would help other women. There are so many different angles I could take, however, and I'm having trouble getting started. There seems so much to say, and I don't know how to say it. I'm going to start with a little bit at a time, here, and see where the writing takes me.

Picture this: you've got your Sunday paper. You've pulled out the magazine to browse through while you drink your coffee. The headline is something like: Do you feel lucky? (Dirty Harry somehow doesn't seem appropriate when talking about breasts, I know. I'm working on it.)

In December 2009, I was diagnosed with DCIS: ductal carcinoma in situ, an early form of breast cancer. The same form, as it happens, as Martina Navratilova, although there I stop making comparisons. There is an incredible range of diagnoses and individual risk factors affecting the likelihood of it turning into full-blown invasive disease. In many women, it never does. In others, it’s highly likely. The key here is that we have an opportunity to prevent (for some) later stage breast cancer, to catch it nice and early before it’s had a chance to eat away at our bodies. Hurrah! The problem is, we don’t know which cases are going to mutate, and when. Bollocks.

DCIS, let alone the whole category of breast cancer, is dreadfully misunderstood. DCIS isn’t a one-size-fits-all disease. There are three different grades, for starters. 1 is low, 3 is high. If you have grade 1 DCIS, and you’re getting on in years, there’s a minimal chance of it turning invasive. My surgeon puts it like this: if you're an older woman with grade 1 DCIS, you may not need to have breast surgery. You may not need any treatment at all. You're more likely to die of old age first. If you have grade 3 (which mine was), if it’s extensive (mine was 9 cm) and you’re pretty young (I was 38), your chances of getting invasive cancer, and soon, skyrocket. I had a mastectomy. Every doctor must make an assessment of risk and advise on appropriate treatment based on the individual patient. So don't hit the panic button. Well, not without being informed properly. Unfortunately, some people aren't - but it's not necessarily anyone's fault. The subject is a minefield and difficult to navigate, even for doctors...

You still here? More soon!

(Photo by "joxin" at http://www.flickr.com; creative commons)

Taking a break

2010-01-22T13:42:00.000-08:00

I'm doing a Marian Keyes. I'm taking a break from my blog because I can't think of anything except my armpit and my left breast. I've been diagnosed with DCIS - Ductal Carcinoma In Situ - an early (and treatable, thankfully) form of breast cancer. Abnormal cells are sitting in the milk ducts, ready to pounce. I've come to think of it as "on the fence" cancer, since the pathology is not at all clear cut. But because my DCIS is widespread and at the high grade stage, a mastectomy is looming. I am waiting for results of tests on my axillary lymph nodes to see if the cancer has become invasive. While this is all going on, I can't imagine writing about anything else and I am not sure I am ready to do so publicly, so I'm reverting to an old fashioned bedside diary. Back soon x

Good Mourning

2009-12-17T05:17:00.000-08:00

Yesterday it was my first child Maia Lily’s birthday. If she’d lived, she would have been nine years old now. Every year, we do something a little different to commemorate her birth. It’s never a happy day, but at least it has a more uplifting beat to it than her death day. Rather than focus on mourning, we try and do feel-good things. It is nearly Christmas, after all.

It helps that Maia shares her birthday with Jane Austen and Beethoven, and so I choose to believe that Maia would have been artistically gifted. It is a comforting fantasy. On what would have been her first birthday, we went to see Beethoven’s ninth symphony in Minneapolis, and the grand finale, ‘Ode to Joy’, was simply the most beautiful sound I had ever heard; I felt like I could cope with anything when I heard that.

The feeling didn’t last, of course. Because we’ve moved around so much, we have never done the same thing every year, and it seems we are constantly creating memorials to Maia, all of them different. Sometimes they work, and sometimes they don’t. One year, when Daisy was three, we made Maia a ‘birthday hat’: it was a tall, white metal cone, cut with stars and diamond shapes, and we covered it with sparkly stickers and a glittering lily. I put a single tea light on a saucer and put Maia’s birthday hat over it, and it made me feel strangely happy. Having Daisy involved in remembering her sister’s birthday made it very special.

Another year, we took some toys to a children’s hospital, but were brushed aside by the staff who didn’t know Maia’s story and were too busy to hear it, so it felt like a hollow gesture, somehow. The key is in having Maia recognised and acknowledged – it doesn’t take much. If I get even one phone call or a card from a friend, I feel profoundly grateful.

This year was a good year, and it is partly because we have finally settled in Falmouth; we won’t be moving anywhere for some time, and people we have met, often only briefly, now know Maia’s story. Like Gina, a play specialist at Treliske hospital in Truro. We had been to Treliske for several tests with Daisy, including one for cystic fibrosis. (After a few awful weeks, we recently found out it was normal.) Daisy was so anxious on these visits that they introduced us to Gina, who gave Daisy much-needed attention and a little toy dalmatian, Lucky. Seeing Daisy so cared for, I was touched, and seeing the cupboard full of toys for children who spend birthdays and Christmas in hospital made me think we could help replenish supplies on Maia’s birthday every year. I told Gina all about her.

A few weeks later, we arrived at the hospital on December 16^th and were ushered into a private room. When Gina came in, she gave us a card. She not only acknowledged Maia’s birthday, she’d actually spent time thinking about what words might bring comfort, and she’d also had the idea of creating a permanent commemorative plaque to my daughter. The conversation lasted all of five minutes. It was just what I needed.

BBC Competition: My Story

2009-11-26T07:28:00.000-08:00

I can't believe I did it: I entered a story competition. The BBC is inviting people from all over the country to send in their extraordinary real-life stories, and I've been reading them over the last few days. The range of themes is huge; some are happy, celebratory tales, and others are absolutely tragic. There are a surprising number of stories concerning the death of a child - so mine is not unusual at all, and there is little chance of winning. But I do believe in signs, and the closing date was the same day as Maia's birthday, so it seemed right for me to enter. The prize involves participation in a BBC series, which is scary. However, the other part of the prize, which would be a dream come true, is the publication of your story in paperback. I bet you couldn't buy the sort of publicity a TV series would provide...

The organisers firmly state that is not a "writer's" competition: they want everybody to have a chance, and presumably they've got ghost writers lined up for the winners. I wouldn't like that too much; I'd much rather write my own story, but I like the open nature of the competition all the same. People could enter who normally wouldn't even try, because they are reassured that grammar and spelling and writing skills play no part in the judging criteria. Despite that, there are lots of tips, videos and links for would-be writers, so it's quite a good writer's resource. At any rate, it has got me thinking about how my own book could be any more interesting or inspiring than anyone else's, when there are so many stories out there.

Today my story made it on to the BBC website, so even if this is as far as it goes, I'm pleased. It feels good that somebody else read my work and posted it up for others to read - that my work exists in cyberspace somewhere other than my own blog.

Parenting the HSM Way

2009-11-12T04:28:00.000-08:00

I have to admit it: High School Musical fascinates me. My children have watched all three movies about 600 times apiece, so I can claim a certain amount of expertise here. It's in the background as I write, on a continuous loop. Lola loves it so much, I find it hard to deny her. The core audience for this movie appears younger than the originators could possibly have imagined: three-year old Lola is cutting and sticking opposite me, but her face lights up when the first scene begins. "I kall moosikawl!" she trills. Here we go again. I am moderately comfortable with the values HSM is instilling in her. Teamwork, Be True To Yourself; you know, the usual. It’s often nauseating, but Ashley Tisdale helps. She’s funny. I don’t like the Be Heterosexual And Find Your Life Partner At School message, but I can mitigate that by talking about lesbianism and experimentation later.

Each film has the same structure, although with its phenomenal success as a global brand and increasing budget, each movie is more glorious than the last. By the third one, it’s become the cultural equivalent of Grease, Chicago and Meet Me in St Louis all rolled into one. It's full of archetypal characters, spectacular dance numbers and toe-tapping tunes, a heady mix of dreadful lines and fantastic ones (the lines are blurred actually; I’ve started to enjoy the worst of them.)

The thing is, the Disney powerhouse is actually teaching me something as well as my kids. All of us are getting something out of it. My children are American after all; they are immersing themselves in their heritage and I don’t mind that. And as for me, well, it shows the value of structure, proves that the formula of the hero's journey simply never tires, even if it is only choosing what university he should go to. It allows me to enjoy something together with my children, albeit for different reasons. As long as we’re all aware of its manipulative nature, it’s hugely entertaining. The best thing about it is when Lola starts singing “I bubbly found” instead of “I’ve finally found” in the back of the car. Then, we all join in.

Extraordinary Ends

2009-10-29T04:01:00.000-07:00

There have been some great documentaries on TV lately. Michelle Hussein presented one about Ghandi, a three-parter that was quite riveting, throwing an initially sceptical light on the ‘father of modern India’; last night began a new Andrew Marr series, The Making of Modern Britain, and then there has been the wonderful David Attenborough series, Life, which has taken over my Monday nights. All of them remind me to stop being so self obsessed about my own little world because they make me feel a part of something much, much bigger: the universal fight to survive and flourish.

Life has particular resonance for me as I write about motherhood and survival in my memoir. I have written elsewhere that there is nothing I wouldn't have done to help my baby live. It was pure instinct; I didn't question it until later. It is so insightful to watch this fight through the lens of mothers in nature, and witness the lengths they will go to in order to protect their young and increase their offsprings’ chances of survival. I was struck by two creatures in particular: a sprawling octopus lumbering across the sea floor, looking for a cave in which her eggs could safely hatch, and the strawberry frog who meticulously places one tadpole at a time in a watery bromeliad cradle high above the ground, well away from her usual home.

The strawberry frog climbs up and down every day to feed its young, which doesn’t sound all that difficult until you realise the frog is only about a centimetre long in adulthood. She seeks out food and does this mammoth trek daily for a month until the tadpoles turn into little froglets; after which, mum takes them home. This total dedication to increasing their life chances is amazing, but what really blows my mind is the octopus. She lays her eggs and nurtures them with her own body’s resources. When their time comes to hatch, she makes the ultimate sacrifice: she dies. Now you’d think that was a pretty stupid thing to do, just when the tiny wee babies are about to enter the world. But she’s hedged her bets. She’s let loose about 100,000 little octopi.

(Online snapshots taken from bbc.co.uk's iplayer here:)

Lola Can Do It!

2009-08-10T08:35:00.001-07:00

Reliving Parenting's Early Days

2009-08-03T12:32:00.000-07:00

I’ve been reading Edward Humes’ Baby ER, which is all about life (and death) in a Newborn Intensive Care Unit. The book was written in 2000, around the same time Maia was born, and it has brought back a lot of memories, nearly nine years after her death, making me realise the extent of what I’ve done by embarking on this writing task. Nine years of grieving, and the raw bouts of emotion I used to live by are quiet and still, like sleeping lions. Occasionally they rear their fearful heads, but reading that book is an ambush. It’s all so very familiar: there’s the drug addict baby, the meconium baby, the IVF triplets, and the equivalent to our baby, with the bloated stomach and the twisted intestines, though no NEC (necrotizing enterocolitis), the disease that killed Maia. Humes writes only briefly about NEC, noting that the Greek word for death is embedded in the name, and my gut twists in response as I read, the sadness infiltrating my bones.

I also finished Rachel Cusk’s book, A Life’s Work, her memoir of motherhood from a few years back, and that was a reminder of how gruelling parenting really is. Not that I need any outsider to tell me that; I have daily proof, but when Maia died, I not only grieved my daughter, but I grieved motherhood, too. It didn’t seem gruelling to me, then. I was desperate for it. People seemed to forget that I was still a mother, and that was an unspeakable wound to me. I idealised the state of motherhood, so that when I gave birth to a healthy child, I was ready to enter a perfect world, and just like Cusk, I was utterly shocked when it stuck its tongue out at me. I must have been fucked up by it, because I really felt that parenting a healthy child was, at times, harder than parenting an ill one – in the sense that, in the hospital, there are many people caring for your child, and you are never alone. Cusk’s loneliness seeps from every page; only poetry and literature are her friends. Her book is testament to how very, very estranged you can feel, when the “happiest day of your life” comes – and goes.

Lucky Henry Allingham

2009-07-18T13:03:00.000-07:00

Today came news that Henry Allingham, at 113 the world's oldest man, has died. The BBC announced his death saying, “His life spanned three centuries and six monarchs and he had five grandchildren, 12 great-grandchildren, 14 great-great grandchildren and one great-great-great grandchild.” They even published a timeline of world events, since his birth in 1896, which bizarrely neglects to mention the Second World War, but includes the death of Elvis Presley. It is, of course, a very public record of what this man has lived through: I don’t know anything about his private life (though it turns out a book about his life was published last year.) I can’t help but think, despite the fact that this man has seen the cruelty of war, he was a lucky, lucky bloke. For what about those people, who have died young, and barely had a chance to make an imprint on the world?

Now I know as well as anybody that luck is in the eye of the beholder. I’m sure Henry didn’t feel lucky, ooh, around 1914-18. But this is a man, given the evidence of his large family, who has surely known love, laughter, friendship and success, as much as pain, horror and sadness. I know I’m making a lot of assumptions, but most of them are pretty universal. He’s a man who has experienced the full pelt of life: had a childhood, whether rich or poor, easy or difficult; made decisions, some bad, some good; made mistakes and hopefully learnt from them, and grew up to be a man. Not just that, though. He grew up to be a man the whole country is mourning.

What a plentiful store-cupboard of memories Henry’s family will have to draw upon. When they feel sorrow in their hearts they’ll be able to dry their tears with an old family anecdote, or maybe by sharing one of Henry’s old jokes. By and by, the pain of his loss will be lessened by the familiar but comforting platitude, “he had a good life”. A long and active life and a legacy to leave behind has to be among many people’s dearest hopes and dreams. The contrast of Henry’s long life, however, with my daughter’s pitifully short one of nine weeks, is poignant. It’s not only the fact that Maia’s dead and our time with her was so short and tumultuous, that there are few happy memories to mine. Stephen Levine has written: “the death of a child is a fire in the mind. The mind burns with alternatives that never come to pass, with fantasies of remarkable recuperations, with dreams of adult accomplishment.” Maia will never grow up to be a woman. It’s the adult accomplishments we’ll never see that I miss today.

Shipwrecks and Snowstorms

2009-07-15T07:53:00.000-07:00

In December 2000, during a raging snowstorm, I gave birth to a baby at 25 weeks. She weighed about as much as a bag of sugar. Not much more than half a kilo. She was living at the edge of viability; we were living in Minneapolis, Minnesota, far away from friends, family and everything we knew. We called her Maia. I’m looking at a Polaroid of her now: it’s all we have. Two large brown eyes peer out from the confines of an incubator. There is no mouth. It’s covered with a gag of white sticky tape, yellowed with spittle, holding two large blue breathing tubes in place. She died when she was nine weeks old. Next to the picture, what remains of her ashes are nestled in an iridescent art-glass vase, etched with a single pink lily, a copy of which is seared into my arm, the memory of her pain made flesh. Dan, my husband, and I travelled to the most beautiful places to scatter her ashes, but we spent the next several years floating in the ether ourselves. In the midst of the worst of the grief, I turned to the letters, poetry and prose of writers who had lost children, people who understood what it was like to drown in self-pity, hopeless longing and utter despair.

As I write, my two-year old daughter is crying out in her sleep and will not relent. She brings me inexorably into the present. “Mummy! Mummy!” she calls from her transitional mattress on the floor, “I want a cuddle mummy!” So I go into her room, kiss her and tell her: “Lola, mummy’s here, everything is going to be alright.” I check on Daisy, Lola’s older sister, snoring quietly in her flowery bed, and I lie down at right angles to Lola’s belly button, reaching up to stroke her head and reassure her. The carpet’s a bit itchy, but I don’t think to change my position: I’m somewhat addled; it’s my birthday after all, and we’ve been enjoying the Burgundy, a good bottle Papy brought back from France and gave me to celebrate in style. I get up a little too soon, telling Lola I’m going to come back, but Dan hears the protests, goes in to kiss her goodnight and tells her what she wants to hear: yes, Lola, daddy will sleep with you in your room, fold down the spare bed next to yours, cuddle you all night if he has to. Sucker, I think. As Lola’s cries turn to song – I can hear her singing Old Macdonald – I sit down to carry on writing, and I can’t help reflecting on what Barbara Kingsolver might call my outrageous fortune.

Kingsolver is just one of the writers I related to after Maia died; another was Mark Twain, whose own daughter, Susy, died when she was in her early twenties. I found extracts from both Twain and Kingsolver, side by side, in one of the diaries I kept with me. So much of the writing I devoured during that time was devoted to grief, and often it would be presented in the form of a journey. Shipwrecks were a common metaphor. I wrote in my diary’s margin: “amazing how the writing I love talks about ships and shipwrecks. Obvious I suppose. But so true.” The contrast between the Twain and Kingsolver extracts I’d copied down in my diary demonstrate that there is a transition from raw sorrow (Twain) to coming to an understanding of sorts (Kingsolver). We have to find our own way through it. Nine years on from Maia’s death, I’m finally ready to write my own memoir: it is a journey into and out of a void, a story about grief. There may or may not be shipwrecks in it, but there’s definitely a snowstorm.

From a letter Mark Twain wrote to a friend after the death of his daughter

(Note: the underlining, caps and comments are all mine, as I used them in my diary):

“Do I want you to write to me? Indeed I do…the others break my heart, but you will not. You have a something divine in you that is not in other men. You have the touch that heals, not lacerates.”

(I want THIS in a friend.)

“And you know the secret places of our hearts. You know our life – the outside of it – as others do – and the inside of it – which they do not. You have seen our whole voyage.”

(Amazing how the writing I love talks about ships and shipwrecks. Obvious I suppose. But so true.)

“You have seen us go to sea, a cloud of sail, and the flag at the peak. And you see us now, chartless, adrift – derelicts, battered, water-logged, our sails a ruck of rags, our pride gone. For it is gone. And there is NOTHING in its place.”

From “High Tide in Tucson”, by Barbara Kingsolver

“In my own worst seasons I’ve come back from the colorless world of despair by forcing myself to look hard, for along 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. Until I learned to be in love with my life again. Like a stroke victim retraining new parts of the brain to grasp lost skills, I have taught myself joy, over and over again.

It’s not such a wide gulf to cross, then, from survival to poetry. We hold fast to the old passions of endurance that buckle and creak beneath us, dovetailed, tight as a good wooden boat to carry us onward. And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another – that is surely the basic instinct. Baser even than hate, the thing with teeth, which can be stilled with a tone of voice or stunned by beauty. If the whole world of the living has to turn on the single point of remaining alive, that pointed endurance is the poetry of hope. The thing with feathers.

What a stroke of luck. What a singular brute feat of outrageous fortune: to be born to citizenship in the Animal Kingdom. We love and we lose, go back to the start and do it right over again. For every heavy forebrain solemnly cataloging the facts of a harsh landscape, there’s a rush of intuition behind it crying out: High tide! Time to move out into the glorious debris. Time to take this life for what it is.”

Hold the Grommets!

2009-06-23T23:34:00.000-07:00

Here is a little respite from my favourite subject of death, courtesy of my six year old's glue ear. The NHS cancelled our meeting with the ENT consultant yesterday, as they had failed to conduct an important test in time for the appointment. I wasn't best pleased, but D was delighted; it meant she could participate in sport's day instead. On the way home, she was bubbling over with joy; her team had won! "I think," she mused, "we were especially good at the Herbert Race." I wasn't entirely sure which race she meant. "Oh, you know! It's the one with the little yellow things that you have to jump over." Oh yes. Hurdles.

What is tragedy?

2009-06-22T03:27:00.000-07:00

Last week I was browsing the college bookshelves and hit upon a slew of random books, each sparking ideas for themes giving context to my memoir, such as displacement and travel (I lived in the US for 11 years), uses of autobiography (what is memoir but this), and female self-representation (I can’t write a book without understanding my own vision of identity, and particularly motherhood). I found about eight books that I couldn’t leave behind, so I took them all out. When I got them home, it was the smallest, simply written, most unassuming book, Adrian Poole’s Tragedy that had the biggest instant impact. That one word – tragedy - began reverberating in my head and refused to go away. It took me back to a moment over eight years ago, to a coffee shop in Minneapolis, in the heart of the American Midwest.

I was sitting in Starbucks overlooking a snow-filled street, meeting with my bosses, Anne and Mary, before going back to work. I’d had a baby four weeks before by C-section, and was still hobbling around in discomfort. The day was so cold, my nostril hair had frozen (it’s a very odd feeling; when that happens, you know the day is going to be below zero Fahrenheit.) Minneapolis has something of a second city looming over the city streets. It’s called the Skyway, and it’s a consumer Mecca of shop-lined bridges linking offices (and yet more shops) so that Minnesotans never have to go outside. You can insulate yourself from the harsh conditions to the extent that you can leave your house via the integral garage and drive to a heated parking lot in the system: you don’t even need a coat. So there we were, coatless and hatless, sipping lattes in our brown leather armchairs, discussing my new baby: nothing odd about that, except that Maia had been born 15 weeks early. An early Christmas present, as the obstetritian put it.

I was incredibly optimistic about how Maia was doing, and I proudly relayed all my stories about Maia to Anne and Mary. My daughter was robust and feisty for a 25-weeker; at five days old, she’d astounded us by coming through surgery to fix her patent ductus arteriosus. (The “flap” that normally closes at birth, allowing a baby to breathe air, had remained open: it was a common problem for a baby born on the edge of viability.) I laughed as I described the everyday task of changing Maia’s tiny preemie diapers; they swamped her impossibly tiny bottom, which was about as big as a plum. But the best story of all was the one about New Year’s Eve. While everyone else was out drinking themselves to oblivion, my husband Dan and I were holding Maia for the very first time: holding her, skin against skin, heartbeat against heartbeat, trying to pretend that the tubes, the screeching alarms and the flashing lights didn’t exist. In the middle of the intensive care unit, sitting in a rocking chair, I closed my eyes and tuned in to the smell of Maia’s skin, her silken dark head cupped under my hand, the Barbie-like limbs curled up tightly under her soft belly, tickling my own. It was heavenly.

“It’s so tragic,” Anne said.

Tragic? I couldn’t understand what she meant, not at all. I had an amazingly strong baby who was going to survive, despite the odds. She was small and, while what she’d been through was immense, we were convinced the worst was over. What did Anne mean by calling my baby “tragic”? Maia was alive, wasn’t she? I pitied the other babies in the intensive care unit: Maia was in crack-baby company. Their stories were tragic. The nurses reassured us that Maia had had the best start; she was bound to do well. And for the first six weeks of her life, that was true. Having a preemie was overwhelming, it was frightening and stressful, but we had hope, we had good care, and we had each other. Tragedy was not a word I would have picked to describe Maia’s existence.

Until she died.

Tragedy, catastrophe, devastation: these were all words that took on new meaning. I understood them now. They were real, no longer figments of my imagination; they mutated from distant, amorphous, conceptual terms to the here and now. I couldn’t get Anne’s comment about Maia being tragic out of my head. How could I have been so optimistic? I wept at the fourteen days I'd wasted back at work when I should have been with Maia. I’d been saving my maternity leave, so that I could spend time at home with Maia in the spring. I was worried about losing my job if I took extra leave. So I spent two weeks at an ad agency researching ways to sell more dog food, in between breast pumping in a cupboard and seeing Maia at lunchtimes. At the end of that fortnight, when Maia was six weeks old, she became critically ill, and we moved into the intensive care unit to be with her night and day. Three weeks later, I watched my child die. I took the rest of my maternity leave, nursing my grief, my devastation, my catastrophe, instead of my beloved child. I was still pumping milk and Maia was dead. Then, and only then, did I realise what Anne had meant. It was a tragedy.

Dot Vomit

2009-06-10T05:29:00.000-07:00

I'm sorry, but I've had to say goodbye to the green and yellow dot template. I thought I loved dots enough to make the relationship work, but I'm four postings into this blog and I'm sick of the template already. It was like looking at a screen full of vomit, and God knows, it was only exacerbated by my writing. I thought I would point out this change of heart to you, dear reader. No more spew for you.

Finding the Candle

2009-06-09T03:49:00.000-07:00

Everybody has a book in them, apparently, and I am no exception. In January this year I started a professional writing master’s degree. I thought I might pull off writing a book if I actually knew what I was doing. I still don’t, but I’m starting to feel a little bit closer to identifying what my book is going to consist of. Words, for one. Hurrah! It’s a breakthrough. It’s so easy to tell people you are writing a book – and, as I did, to leave work in 2002 telling everyone with smug certainty that’s what you’re going to do – but it’s not so easy to admit, seven years later, that not only are you nowhere near achieving your goal, you haven’t even started, and furthermore, you don’t actually know what kind of book you want to write. I have been in the dark for a long time.

This week, everyone on the MA course had to pick a specialism, and for me, that choice came down to fiction and non-fiction. In order to make the decision, I had to look very closely at my motivation for writing. The reason I’d given up work to write a book in 2002 was because my daughter had died, and I desperately needed to write and tell the world about it. At the beginning, I shared everything: the grief was my guiding force, and I couldn’t believe anyone wouldn’t want to read about it. I even sent one of my heartfelt poems to the New Yorker: that’s how good I thought it was. (Now I know I was mistaking depth of feeling for good writing. I don’t know anything at all about writing poetry for public consumption.) As time went on, I began to feel embarrassed about my wretched prose as well, and I didn’t want anyone to see my naked grief any more. Deciding to do the master’s course was a push to make good on an old resolution in a way that wouldn’t be just writing-as-therapy. The grief is a guiding force for my writing, but now I understand it is not the only one.

I browsed my bookshelves looking for a sign, something that would inspire me to make the right decision. I came across Isabel Allende’s Paula, a book she began writing while her daughter was in a coma and finished after Paula died. I pulled the book down to examine it again. I’ve read it many times. It is a book mired in sadness, but it is also a book about the joy of living. One reviewer described it as “beautiful and heart-rending…Memoir, autobiography, epicedium, perhaps even some fiction: they are all here, and they are all quite wonderful.” For me, the book was like a grief potion: as soon as I opened it, familiar waves of loss came streaming out of the bottle. I sat curled up in my favourite armchair, lost in the narrative and sighing at Allende’s prose, and realised this was a format I wanted to explore. It reflected something I wrote in my MA application, and somehow I’d forgotten: I want to document my daughter's story and help others understand and deal with grief and loss; I would like to help others avoid feeling, as I did, like an undignified, invisible, stupid human being. Then I wrote to Isabel Allende in bold sorrow and told her I was going to write a memoir.

To my astonishment, Isabel wrote back, not just to tell me she was sorry about Maia’s death, but also to offer some advice. Could I have received a clearer sign? I don’t think so. I am finally going to get my words down on paper, although I am well aware that the hardest part is yet to come: I’ve got to start looking the facts in the eye again. Isabel told me this: “Writing a memoir about loss is like going into a cavern with a candle, illuminating every corner slowly, finding your way in the darkness.” I haven’t gone into the cavern yet, but I’m glad to have found the candle.

Poetry at Large

2009-05-13T06:40:00.000-07:00

Have you seen the BBC's campaign advertising their poetry season? I saw one of the ads the other day. Frank Skinner was giving directions to a cabbie in the form of a poem. For an instant, it was mildly disturbing to hear the football-mad comedian reciting poetry, but I realised that was because there was something curiously sad and lovely about it. The sadness was in the poem, but I also felt a little sad because we don't encounter much poetry, these days; perhaps the Arctic Monkeys hit the spot every now and again, but it isn't enough. There was loveliness in the language, and in hearing someone 'ordinary' deliver it. I find I encounter the most poetry when someone has died, or another awful thing has happened, and it's so uplifting to enjoy a poem in an everyday way. (I'm so inspired, I just ordered 'A Poem A Day', a book of poetry for children by Adrian Mitchell and illustrated by the wonderful Lauren Child among others.)

Here's a link to the Skinner ad. The verse he recites is from 'Where Are the Waters of Childhood' by Mark Strand:

http://www.campaignlive.co.uk/thework/news/903124/BBC-Poetry-Season-RKCR-Y-R-featuring-Frank-Skinner/

On the subject of poetry at large, I still haven't managed to track down Mary's dots, the subject of a poem I mentioned in my last post, although I did have a bit of a breakthrough. It was rather exciting, actually. I sent a note to the late poet Adrian Mitchell's agent, and guess who replied to me? Celia Mitchell - his wife. I felt honoured, because not only had she bothered to reply, naming the poem, the collection in which it was published and the page number it was on, she also said I could contact her if I had any problems finding it. (The book is now out of print.) The problem is, the poem she cited - Song About Mary - is not the poem I am looking for. Not a dot in sight. I have ordered a second hand copy of Poems (1964) to make sure, but I fear the mystery deepens.

For the record, here's a link to the Song about Mary that I think Celia is talking about:

http://vulgarmarxism.blogspot.com/2009/01/adrian-mitchells-liberal-christ-and.html

Methinks this is becoming a bit of a poetry obsessed blog, so next time perhaps I'll venture elsewhere. Till then, I bid you adieu.

Join the Dots

2009-04-28T03:04:00.000-07:00

Welcome to my parallel universe. This is the first blog I have ever created: I have lost my blog virginity, and it feels... terrifying.

Thankfully I found a dotty template, which helps to ease the transition, because I love dots. Love them, love them, love them. You know that scene in American Beauty where Angela is rolling around in scarlet rose petals? I'm like that with dots. Never done it literally of course, but there's something about polka dots that makes me swoon with nostalgia and longing and want to jump into them. Perhaps it's because I'm a child of the 70's, and those dots rekindle happy childhood memories - let's face it, polka dots were the best of a bad bunch, a safe bet among a sea of mustard and fern swirls and other hideous patterns; I still shudder when I think back to a particular tartan jumper in those colours. To be quite honest the dots in this template don't quite cut it: they bear a frightening resemblance to my childhood yellow and green. I'd rather have simple, straight-talking red or vintage blue dots, but I suppose you can't have everything.

While I'm on the subject of dots, there is a poem featuring them that I desperately want to track down. It might be by Ted Hughes. Or not. I've written to the British Library in the hope that someone clever will be able to identify it immediately, but I've heard nothing back; I can't think why. What I remember are the words:

But Mary...Mary had three dots

I've googled it, naturally, and it turns out Three Dots is a clothing brand originating in the "Wilds of California" (LA?), but my Mary's no fashionista. The power of the blog-o-sphere will be truly revealed to me if someone comes up with the identity of the elusive poem. Gah, who am I kidding? The power of the blog-o-sphere will be well and truly revealed to me if anybody reads this. Like Mary, I shall take comfort in my deep and meaningful dots...