So, I’m really tired, every day this week I am working all day and working or attending events every night … I’m really sleepy and I can’t sleep. I can’t sleep until I’ve written this.
It goes like this …
Dear nice, young (usually), male (usually), breast cancer reconstruction surgeon,
I don’t care what you can SEE, I care what I can FEEL. When I am dressed, when I am up and about, when I am getting on with my life, the size and shape of my breast really isn’t a big deal. I’m a woman, in my middle age, I have body issues, it’s normal for me. I’m not delighted with my body, but I have made my accommodations and actually, I’m kind of ok with it all. I was kind of ok with having about 2/3 of a breast after my first cancer. I made it ok.
What I’m not ok with is the pain of the reconstruction, but I know I will learn to live with that, it’s only 9 months, the pain of the first surgery took years to get used to.
What I’m not ok with, is you making it all about how my breast LOOKS. (The breast made from a chunk of my stomach, the breast that took weeks to heal, that breast that was an open wound for ten weeks because of the previous radiotherapy – we think.) I wanted a reconstruction for a whole bunch of complex reasons, not all of which I fully understand myself (yet, I hope to one day) but I really didn’t want it JUST because of how it looks.
When you ask me to stand in front of you, both breasts bared, and compare my ‘new’ breast to my ‘old’ breast and ask if I want the old one re-shaped, you are insulting me. You are insulting the part of me that has, brilliantly, not had cancer. I quite like the bit that’s not had cancer. No, I don’t want it also cut up. (I try to love the bit that has had cancer too, I figure that’s more sane. It’s tricky, but I try.)
When you, fully dressed, ask me to stand in front of you, WHILE YOU SIT DOWN (to be at eye level with my breasts, I presume, no-one’s explained it, it’s what the young doctors are doing now – not the older ones, so SOMEONE has told them to, and recently), what you do is subject me to a male gaze where I am a semi-naked woman in my 50s and you, a young man in your late 20s or maybe 30s, are JUDGING the shape of my breasts.
But the thing is, and the reason I can’t sleep, is that I don’t judge the SHAPE of my breasts all day. From where my eyes are, I can’t see the shape. That’s what it’s like to be a woman, we can’t see the full shape of our breasts other than from above. It’s where our eyes are. (They’re in the right place!) But when I come to bed, I can feel them. When I lie down, I can feel the weight of the bits that have been a bit screwed up with fat necrosis. I can feel where the heavy, solid chunks of new breast-from-stomach drag. I can feel the bit I would like ‘fixed’. And it has nothing to do with looks, BECAUSE I AM NOT LOOKING AT MY BREAST. It has to do with feel. It has to do with what it feels like. And I don’t so much care if it’s lopsided or not even, I’d quite like some soft back. And when you sit and stare at my breasts – as someone has clearly (in the 14 years since my first breast cancer surgery, because it’s different) taught you to do, you make me feel exposed, shy, worried, uncertain, and no amount of my grown-up-woman’s bravado (and I do have it, I do act it) makes me feel better about how it feels to be stared at by you.
I do not care what YOU SEE. I care what I FEEL.
Those two things are very different. Someone is teaching you wrong. It has changed in the past 14 years. What I FEEL matters more than what YOU SEE.
You are polite, and kind, and helpful. And I am grateful for that. But someone has taught you that it’s ok, to put what you see ahead of what I feel. It’s not. It’s MY body, and your gaze is not the arbiter of my body.
I hope you read this. You have all been very kind and helpful and I’m not dying of a recurrence, as far as I know. These are great things. Great*. And in the bigger scheme of life-and-death, how you look at me doesn’t matter so much. Except that how you look at me makes me feel judged and uncertain and unsure. And I’m a grown-up woman who mostly sorted that shit YEARS AGO. So while I’m staying alive and you are making your living making that work out for me, please understand, that what I FEEL matters more than what YOU SEE. I’m not quite sure why I haven’t been able to say this face to face, other than that cancer (again) has disabled me a degree (again), and I’m always so grateful and feeling so lucky to be alive that I’m not very good at saying what I want. And you’re dressed and I’m not, so it always feels a bit odd …
I can sleep now. I worked it out. It’s rubbish to have my physical feelings negated by someone (younger, male) telling me that the shape of the breast, that is hard and chunky, LOOKS GOOD – because it’s my breast and I care about how it feels.
(Other reconstruction women – it won’t happen to all of you, fat necrosis is a thing, it happens with some reconstructions, it happened to me, it might be because of the radiotherapy I had 14 years ago, or not, or other stuff. It happened. It won’t necessarily happen to you. You won’t necessarily feel as I do. This is my blog, I write it for me and for people who MIGHT feel as I do.)
* and when all the people who’ve never had to worry about staying alive are equally grateful, I expect we’ll have the most astonishing society. Until then, I’m fine with people who have had to worry about staying alive being a bit grumpy about it every now and then. None of us can constantly do “lucky me”, nor should we have to.
ps – there’s an update/follow-on piece & dialogue with a plastic surgeon here
Not Writing But Blogging 
too right Stella xxxxx I feel an urge to ask you to send it – truly to the hospital
LikeLike
That’s really important, Stella. It would be good to think the doctors and surgeons will read this too. Thank you and all good wishes to you.
LikeLike
i made a few rather caustic jokes in person to my (female) surgeon for the letter she wrote to my GP cc-ing me in surgeon language telling of my ‘significant droop’, my ‘deformed’ back etc etc…saying i knew she was talking about me in medical terms and it was not an actual judgement…but it seemed to make her think, aha actually this is a person i’m talking about. i told the breast care nurse about it and she ‘omg that’s dreadful…but she’s a lovely woman.’ and she *is* a lovely woman. and she blushed dreadfully when i joked ‘i really never knew i was ‘deformed’ and said ‘oh i didn’t mean it that you are actually deformed, it’s v normal, it’s just a way of describing it medically’ …it’s a hard line for them to tread, trained, precisely, medically, clinically..then having to deal with real people, out in the world
LikeLike
You are an amazing analyst of the most complex and painful feelings, and then you make it understandable for the rest of us. This should be compulsory reading for all breast surgeons. It is revelatory.
LikeLike
When I was a nurse, I noticed that surgeons’ work is usually with people who are unconscious….. Maybe a clue?
LikeLike
Love this. It’s exactly what the doctor, and his colleagues need to hear.
LikeLike
thank you Andy, and all of you. x
LikeLike
A thought provoking and emotive blog Stella. I feel strongly that the health care professions have a lot to learn from this piece. We need it as part of our core curriculum’s. Can you get this blog published as an article for the major nursing/medical journals? If you do I can see it becoming a key paper for future health care professionals literature research. Keep sharing please as I’m learning lots. More importantly your helping me to improve my practice /patient care.
LikeLike
thank you Jayne. I’m speaking to some people about sharing it more widely with medical profession.
LikeLike
Dear Stella, I’m a breast reconstructing surgeon and your blog (which I read first in the Guardian) made me sad. There’s a lot of surprisingly critical debate in the paper’s comment section so I thought I’d read your unedited version. If it’s of any value to mention, once an exam in one of my clinics is over my patients get dressed as I am as uncomfortable as you would generally want/expect of a human holding a conversation when only one person is naked. I would hope this is true for my colleagues up and down the UK. I’m certain you appreciate an examination needs to be done and perhaps I’m missing the point but further discussion about surgical options certainly shouldn’t be done staring at your breasts. If your main drive is that shape and design is no substitute for how your body feels and how you feel your reconstruction then this is an issue your surgeon needs to be able to respond to. I would hope an Oncoplastic surgeon attempts to discuss how reconstructions feel and can make you feel when deciding upon how and why one is to be done. How alien they can be and how asymmetrical you can be. The latter is something our training/programming makes us try and address but should never be the goal above a person’s holistic well being . If a surgeon tries to replace emotion with aesthetic then so much is lost as affect has little to do with shape. I am perhaps beginning to ramble but I would want to tell you your blog was read with great interest by at least one reconstructive surgeon. I try and limit the time a woman is undressed as why should social norms be ignored during such sensitive discussions? This surgeon appreciates a lady who has had surgery for breast cancer is always at a disadvantage in such a clinical environment even when the news or clinical findings are excellent. If your surgeon has lost this perspective then your article should be a vital point for his reflection. Also if you read this and feel I’m still missing the point I’d be hugely grateful if you could let me know as if I can be certain of one thing, many of my patients will feel like you.
LikeLike
Yes. My surgeon was full of ideas for other bits of me that he felt could stand fixing (I have ovarian cancer as well so have had more parts removed and carry more scars).
There is also the call from a young plastic surgeon that I received asking me to participate in a study. I had both breasts removed (cancerous and non– I am BRCA+ and have had ovarian and breast cancer) and they were looking at the psyche of women since removal of the healthy breast was seen by some docs as disfigurement. Really? These same plastic surgeons who make $$$ doing augmentations???
Thank you for your piece and for letting me vent.
LikeLike
dear Jon Lund,
thank you so much for your response.
I tried both in my original piece and in my few (because it got too much) responses to the comments in the Guardian piece (mine, but edited, and approved by me) to be very clear :
– I am HUGELY grateful to the people who have kept me alive
– I SEE that they are trying to be kind and generous and aware
the disconnect is that I know what I FEEL and they are (obviously, hence the sitting/standing stance) being taught to respond to what they SEE.
Part of the problem is (the opposite of what some CiF commentators are annoyed about) I’m explicitly trying not to single out specific medical staff, but those who have – obviously unintentionally – placed me in a position of discomfort, have not been my actual surgeons (there were three surgeons, these are none of them*), these are the younger, newer ones I have been seeing between times. And someone really is teaching them to position women standing opposite them as they sit, and it isn’t comfortable (for either of us, I’m sure) and it is a new experience to me. My more senior plastic surgeons didn’t do this. I didn’t want to say that in the CiF piece expressly in order not to single anyone out. It is – as I said in the piece – obv what they are being taught. They are very kind within what they are being taught. But someone needs to let the teachers know that this feels VERY odd for the patient.
Thank you. Thank you so much for being the listening medical person. My time with two cancers has taught me that most of you totally want to know how it is for us. My siblings in the NHS teach me that too. You are brilliant. I don’t need CiF commentators telling me I need to be grateful, I am – but I’m also aware that I am (even when shy & scared!) an articulate, aware, educated, and therefore privileged woman. And if I feel this discomfort, this disconnect, then many more, who don’t have my resources, feel it too.
I’m not sure what the answer is, but I suspect the simple, “What does it feel like to you? What feels different? What would you like to change?” would be GREAT first questions.
I’m so grateful for your response. THANK YOU.
* in fact, it’s a sad indictment of our health service that those angry in the Guardian have assumed I might have ONE medical professional caring for my illness. I wish. I have seen seven different people (five men, two woman) in my treatment since February. (That’s actual treatment, personal consultations, not the many others I saw on ward rounds, in meetings, as adjuncts to the prime professional). All of them doing the same job, but no continuity of surgeons beyond the initial operation.
LikeLike
Dear Stella, I thought your guardian piece was magnificent. I was given a strong piece of advice from a journalist previously concerning CiF and indeed the comments section on the Guardian that I have found has kept me sane over the years: never read below the line!
LikeLike
Hi Stella, I was diagnosed with aggressive breast cancer in July. I am 40 otherwise althletic and well, no family history of BC. I have had a mastectomy and full lymph node removal and rebuild. I’m now undergoing chemotherapy which is helish. Post mastectomy it became necessary to bare my breasts at every visit to my Manchester hospital and it was rather odd not to!! Having an adverse reaction to my new implant I was told at hospital that the professor was being consulted. During my usual semi-naked conversational consultation a man burst into the room, pulled the curtain and immediately started to prod, cup (could have been fondle) and talk to the other professionals present. He made no conversational effort with me nor did he introduce himself. ‘My name is Helen, I announced and you are presumably employed by the hospital?’ Instead of the embarressed acknowledgment of his social faux-pas, the ‘man’ simply became irrate with my intrusion. Perhaps it is my social worker’s values and drive that found me next uttering ‘I am not actually a public property’. His inhumane skill base persisted and he left shortly afterwards. The nurses were very embarressed and explained that Prof Personality was not a people’s person. I responded and I am not a disease or cattle. I have to add everyone else at that hospital have had an excellent bedside manner, after all surely humanity is our greatest gift.
Helen x
LikeLike
Dear Stella,
I am a Plastic Surgeon, I read your article and I find your story relevant to me but it leaft me with some questions. Would you start an open or private discussion with me about that?
Kind regards,
Marco Romeo
LikeLike
Marco, I’d be very happy to talk further. Am away working without much Internet for next two weeks. Let me know an email address I can contact you on.
LikeLike
Have emailed.
LikeLike
Thank you, I’ve just read your reconstruction piece again, so thank you again
LikeLike