Sponge breasts 'r' us

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

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

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

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

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 ...

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

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

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 ...

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

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

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!

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

A prayer, sort of

Family Fortunes

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

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

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

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

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

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

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...

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

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

The first ever public orange surgery workshop took place at the wonderfully eclectic Port Eliot Festival on 25th July - Jarvis Cocker calls it "a festival of ideas" - thanks to an invitation from the people 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. Partly, it was because I simply didn't know what to expect. Who was going to be in the audience?

The answer was: all sorts. There were patients who had sought out my talk, and there were people who came out of sheer curiosity. 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. It was evident that the workshop can benefit not just patients, but everyone around them. It's about understanding what's happened to our bodies to help us feel much more in control of the situation, and for others to understand what we have been through so that we can relate to one another. It beats the medical prose in some of the patient literature for getting information across in a pithy (couldn't resist!) and accessible way.

I wondered if people were afraid of coming to the workshop. 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 after Operation Orange, people were coming up to me afterwards to tell me how much they enjoyed it. They were genuinely amazed. It had truly opened their eyes. 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

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 what Mr A calls 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

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

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):

1. 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.
2. 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.
3. 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?

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.

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

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

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

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

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

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

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

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

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 physical cause – cancer – you remove part of the bowel, close it, there’s no psychological 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.