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.

Night at the museum

Last Thursday morning, my friend Emily sent me a link to an article in the Guardian about a craft 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?

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

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

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

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

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.