About surgery and its scars. [TW]

An audio version of this post is available here.

I read this piece in the Guardian about the psychological scars left in people after being in intensive care, and it has prompted me to write this. Fair warning: this piece is very emotionally raw for me, and is very frank about surgery, and maybe this sentence should be me saying “turn back now, those of a weak disposition”, but actually I’m saying the opposite. Read it. People you know and love are going through stuff like this. If they’re not now, they will at some point. Read it.

I was at school with a boy called Marvin*, who had had the misfortune to be born with hydrocephalus. I didn’t know him well. I can remember, on a little green in front of the school – just outside the gates – while waiting for his parents and corgi to arrive, we had our first and only ever conversation and he told me that he had-had fifteen surgeries. I think we were six, seven. Very much still in “little kid” territory.

It stuck in my mind.

Later in life, when I started to need surgery myself, Marvin rose through the mists of time, that skinny, fair-haired little boy with specs, who had had fifteen surgeries. And without ever knowing he had done it, he conspired with other pressures to shame me into solitude with my own experience.

I daresay he mentioned it – blurted it out almost as the first thing I knew about him – because that experience had been such a formative one. At that age, being in hospital, being ill, being operated upon repeatedly, probably constitutes almost all of one’s sense of identity, and that’s reinforced by the adults in one’s life. It’s the elephant in the room that everyone hangs a garland upon as they enter. There’s no room for other experiences or self definitions: you are the brave little boy. But surgery, hospitals, are traumatic, and we don’t talk about that. We talk about the bravery of children who go through surgery or cancer treatments, but we never acknowledge that it isn’t bravery at all. That they don’t – none of us really – have a choice.

I don’t know how many surgeries I’ve had, but I know I don’t really talk about it. Sure, I mention it if it comes up, usually jovially: yeah, I had to go and have everything rebuilt at one point ha ha ha. I’m like the Bionic Woman. But that it was an experience whose trauma built up in me is something I don’t say.

I know my first surgery, intended to treat severe endometriosis, was a D&C. They scrape the lining of your uterus away, and hope it grows back right. It’s not major – an overnight stay, maybe. I woke up covered in my own blood. The hospital bed was full of it. It had been there for long enough that it had oxidised brown and smelt like old blood, not fresh. That weird, high, sticky smell that still makes me gag. I was alone. I got up and went into the adjoining toilet, washed myself. Put my own nightdress on instead of the gown. Stuffed a wad of toilet roll against my vag. Rang the bell. Sat in a chair while they changed the bed. I was calm as Buddha.

And that was supposed to be that. But it came back.

The second, the third were similar, but not so bloody. Laparoscopies, lasering endo off various internal organs, and D&Cs became normal. My abdomen is covered in tiny little scars from it. But it came back.

In the meantime I was living with endometriosis. It was not merely a question of heavy periods. It was constant. I never knew how badly I would bleed or when. I did not want to go out because going out meant wearing layers of protection in case I suddenly had a heavy bleed. And your vagina gets very very sore when you have to wear tampons or pads every day. And checking “am I bleeding?” every hour because with the biggest tampon and the biggest pad in the world on, you still only have an hour if it kicks off, puts a real dent in your night out. When it does kick off and you have 15 minutes before you’re in so much pain you can’t speak, it doesn’t dispose you to want to go far from home. My handbag rattled with Neurofen. I took eight a day, on a good day. On bad days I took whatever. It made no dent in the pain on bad days.

I went out to lunch with some friends from work one day and as we sat in the pub eating our chips it kicked in and that was the first time I had seen other people react to it. Apparently I went pale blue and sweaty and my hair went limp. I couldn’t walk, I couldn’t even sit. They drove me home. Seeing them see me go through it somehow made it more valid. I got quite a lot of grief for not coming back from lunch, from work.

I pushed for a hysterectomy. Hard. I didn’t have a life. I wanted a life. I didn’t want children and I knew my own mind on that topic. This was how I might get a life. My GP was an utter cunt. She wrote me a letter denying me a second opinion. She tried to force tranquillisers on me. She did not believe what I was experiencing. Short of dumping a bag of bloody linen on her desk, there was no way I could prove it. She refused to examine me (she had only done so once, a year before). She eventually referred me to the hospital gynae with a letter all but stating that this was mere neurosis and to give me a once over and send me on my way. I sued her.

At the time I didn’t know it was that painful because it was eating through me. Or that I had a hole in the back of my vagina. And because she didn’t examine me and because her letter meant I got examined by a newbie student gynaecologist – an encounter that from start to finish was over in four minutes – they didn’t spot it either. I sued them, too. I won.

This was traumatic.

I paid privately for a hysterectomy. It took place in August of 1995. I was 25. I had to beg my husband to be there. He didn’t want to be. He cited pressure of work, but with hindsight I don’t think that was the issue. He needed a wife with a uterus attached. Or perhaps I mean a uterus with a wife attached, I don’t know. At any rate that surgery ended my marriage. After it, he moved to the spare room and never came back, and all the thousand small gestures of goodwill, the little moments of connection upon which a marriage is predicated, stopped.

This was traumatic.

But as surgeries go, that was a lovely one. My consultant was a peach of a man, gentle, reassuring, humane. Tons of temazipam before I went in, so I slept and cackled my way through the cannula insertion. I woke up with the shakes. Went back to sleep again. Woke up, still shaking so hard it seemed my bed would walk across the room. I looked at the clock. Surely I must need a wee? I called a nurse to help me stand up, not realising I’d had an epidural. I faceplanted the nurse. We laughed. I went into the little loo (you can walk with an epidural, you just have to lock your knees), and … and bizarrely, having just had abdominal surgery, I washed my hair in the sink. That night I remember a nurse coming in, in the dark, perfunctorily flipping me over, and jabbing the most extraordinarily painful needle into my buttock. It was morphine. I was asleep before I got to the “w” of “ow”.

It was August-hot, my goodness it was so hot. I had long compression stockings on and complained to the lady who came to clean my room the next morning. She told me the heat was making her prosthetic breast slide around like mad. Hello, sense of proportion. Maybe the compression stockings weren’t so bad after all. They took the stitches out, which I had been pretty scared about, but it was painless. “You’ll be in for five days”, they said. I was in for three. “You’ll be laid up for six weeks,” they said. I think I redecorated the living room on week five, although the first two weeks post-surgery, were punctuated by my regularly falling asleep instantly, like a toddler.

And it was all ok. Because this was the end of it.

I had my life back, and all the ghastliness and stress of the surgeries now seemed something in the past, and because it was over I was at peace with it. My new GP asked me whether I had children every time I visited him. Every time, I responded that I had had a hysterectomy and never wanted children, and he would say “you are brave, but I can see the sadness behind your eyes.” I didn’t go very often.

And then, in 1997, shortly after the deaths of my grandmother and grandfather, who had brought me up (it wasn’t a good year), it came back. I was bleeding again. I went to the Portland. The good gynaecologist there examined me and went pale. He had found the hole, tucked away in some long ignored corner of me. He thought it was cancer and told me we needed a soft tissue expert, that he could not do this surgery.

This was traumatic. And painful.

So we booked me in for an exam with Lindsay MacMillan – oh, what a lovely man, now sadly passed on – and he was scheduled to do the surgery. We did not know how bad things were, but we knew that the top back of my vagina was destroyed and that my bowel was also damaged, both needed profound reconstruction. It was likely, aged 27, that I would come out of this surgery with a colostomy bag. We didn’t know if it was cancer.

This was traumatic.

I was very, very scared. I booked myself on holiday, just me – because although I was still married I was in fact entirely alone – I flew off two weeks before the surgery, to take my mind off it. It was my first trip abroad alone and my first trip to the States. I went to San Francisco. I knew some people there, but they didn’t turn out to be gentle. In Fresno I was held at gunpoint for I don’t know how long in a man’s living room. At one point he took me down to his cellar, soundproofed, via a wooden trapdoor fitted in the floor of his garage. He had to move his RV to open it. I told him to get on with it and shoot me, but he didn’t. I could say more, but I’m not writing about that, today.

I came home. I didn’t tell anyone. There was no-one to tell. That was traumatic. And then a few days later I went in for this surgery.

The same routine again: shaking, waking, not knowing this time what was left of me. The nurses would not tell me. I was unable to determine it for myself because I had all sorts of drains and tubes coming out of me, which I had not had before. Having them sticking out of me was scary. Having them removed was scary. I remember the nurse warned me it would hurt. I turned my head and looked out of a window. On not the next rooftop but the one beyond, a man was working just in jeans, in the sunshine. She pulled the drain and it didn’t hurt, it tickled my insides (I think my idea of “hurts” bore no relation to the normal idea of “hurts” by that stage) and I laughed my head off. She said she’d never known anyone laugh before.

MacMillan came the next morning and it hadn’t been cancer, and I didn’t have a bag, which was good. But the surgery, even by his standards, had been so demanding that he had stuck a video camera inside me and filmed it. He was rather excited about this. I was less so. But glad to mostly be in one piece (and I kept my cervix, yaaay!). Apparently the endometriosis was undeniably still in my body cavity. He had lasered off what he could and a ton of adhesions from all my previous surgeries, but you can’t get it all, and the presence of oestrogen keeps it going. It was quite possible that it would continue to eat through me. I went home. Within 24 hours I had a fever. I was readmitted to the Portland in the dead of night and the doctor on duty there had to borrow a huge torch from the janitor to examine me. He used a speculum.

You really don’t know terror – proper fucking terror – until you’ve just had your vagina surgically reconstructed yesterday and someone with a janitor’s torch and a speculum comes to examine you.

I didn’t go back for my check-up. I removed my stitches myself, a few days later.

At this time my legal case against my old GP and the hospital was still ongoing and I ended up – again without my husband – watching the film of that surgery as part of the case. It is an unusual experience, watching someone burn your ovaries with a laser from inside your own abdomen, or seeing someone stick a finger through the holes in your body that should not exist. My poor lawyer went quite a strange colour. I didn’t really have a reaction to it until I was on the tube on the way home afterwards, when I suddenly and quite silently and without actually feeling any kind of emotion, cried. It was quick. Cry: end cry. Like a procedure called in a programme, used, stopped.

I got divorced. I found someone new. And healthwise things were ok – for a given value of – after that, until my sister’s wedding, when I suddenly projectile vomited and couldn’t stop. I’d had a very sticky-out tummy for a while, and knew something wasn’t right, but by now I was so terrified of going to an NHS GP – who wouldn’t listen to me – or to a hospital, who likely wouldn’t examine me properly – or to a private gynae, who (and this is worse) WOULD, that I just tried to ignore it. It’ll pass. It got worse. And then this happened. I honestly don’t remember who I went to this time. Maybe the Portland again. And there was something the size of a seven month pregnancy in me. And they thought it was cervical cancer. And I couldn’t get an NHS surgeon to see me. For weeks I was on the phone trying to get someone to see me. Because the initial appointment was private this was hard. My GP was not helpful. In fact I had the distinct impression I was naughty, inconvenient for having gone straight to a private gyn I knew and trusted, rather than going to someone who wouldn’t listen and had no clue of my history.

This was traumatic.

I have a very clear memory of spending a lot of time on phone calls – each one short – and of one afternoon sitting at my desk in my office with my head, my face in my hands and crying. It was the first and only time I ever cried at work. But this was despair, because here I was with this huge wtf in me, and … I just couldn’t get any help. Eventually I did. I had surgery at King’s College up near Euston – not the lovely new one, the really scabby old one. I lost my ovaries, but it wasn’t cancer, again. The cannula hurt like fuck. The fragmin shots left me covered in bruises. I was on a normal, open ward and this alone made me want to die. On my release day, the nurses turned up with a big bag of birth control pills. “I’ve just had my ovaries removed,” I said, “and they took my uterus eight years ago.” No, I had to take these, apparently. Why? Because I needed the oestrogen. “I can’t take it,” I said. I’ve got endo, that’s why I keep coming back. The oestrogen keeps it alive.” They hadn’t a fricking clue what they were doing. I came home without anything.

I was referred to see an endocrinologist to help me with the whole “suddenly not having any ovaries” thing. I told him I wasn’t taking oestrogen, and why. He told me that without oestrogen I would suffer terrible depression (really? At that point how would I know?), that my skin would thin and wrinkle and I would be old and unattractive. That I would have no libido. That my vagina would dry out and be useless.

And that my bones would crumble, but that was totally secondary to the whole “becoming ugly and unfuckable” thing.

But I couldn’t take oestrogen. Because if I had to go through another one of these “Oh you’ve got cancer! Oh no wait, you haven’t got cancer” things I was going to hang myself just to make it stop. So I didn’t take oestrogen. And I didn’t go back to that endocrinologist.

Cue two years of actual hell. I can’t describe it. It was like being inside a washing machine, if washing machines’ boil cycles also included a panic mode. And then my body adjusted. I am not wrinkly. My vagina didn’t dry out and disappear. I have a ferocious libido. Never believe people when they say these things. Never be afraid of being ugly or unwanted.

Midway through 2012 I had something else go wrong. I ignored it for as long as I could, but eventually I had to go back to my GP and say “again with the vagina” and I gritted my teeth and let her examine me, and she got the hospital to send me an appointment. And I moved that appointment back. I moved it back. I kept moving it back. My GP gave me shit for it. I explained that I find examinations incredibly traumatic. She responded by saying I needed to take responsibility for myself and that in future she would refuse to refer me for anything else.

I moved it back every month for a year. And then eventually – I don’t know why, but eventually one day I was capable of keeping the appointment, so I went. I sat in the waiting area (thankfully alone) feeling dizzy and sick. When I finally got called in by a really lovely registrar – my goodness, she was so kind – I sat down, burst into tears and said “I’m sorry but I can’t let you examine me.” And she said it’s ok. Sometimes this happens. We’ll book you in and do everything under a general anaesthetic. “We book women in for smear tests under a general,” she said. And the relief was so great. Not that I didn’t have to be examined, but that this was normal, that there were procedures for this, that other women felt the same, that at last, for the first time, someone medical had heard of the experience I was having and considered it valid.

The surgery was ok. It wasn’t really ok. When they tried to put the cannula in, all my veins hid. They bent two needles scraping them about in my hands. It hurt. A lot, actually. There was no premed. As usual I woke and just felt relieved it was done, just wanted to escape. And I went home and didn’t think about it any more, although peculiarly this fairly minor surgery was the most painful to heal.

None of this, individually, is a big deal on paper. Yet cumulatively I think this last surgery may have represented the final straw that’s broken the back of my capacity to let people near me. It’s not even the surgery. It’s my GPs attitude. It’s the assistant anaesthetist holding a needle bent like a fishhook up in front of my face, “Look!” It’s the fact that for every kind and competent consultant surgeon or anaesthetist or registrar, there are people who would give a woman who has just lost her ovaries, birth control pills (imagine the raw agony of that if you had been a woman who wanted children), or who tell you off for being terrified, who don’t listen, who deny you access to basic medical care out of sheer ego, who deny you access to basic medical care because they think it’s impossible to have mental health issues AND a broken body, who prioritise your future sexual availability over your future skeletal integrity.

We have a problem with the way we treat people. We have a problem with the way we view and speak about surgery and medical intervention. We aren’t being honest when we call a child or a cancer patient “brave” and in the same sentence do not admit that we are failing that child or that cancer patient – we are placing an even greater burden on them – by requiring “bravery” of them. Let’s have less bravery. Let’s have more honesty, and let’s have the drugs that make these often very traumatic experiences bearable, painless, made available for people across the board – not just dependent on your having a sympathetic GP, a creature I’m personally convinced is mythical.

This is what we don’t talk about when we talk about surgery. That people you don’t know touch you. They mean well (sometimes) but they hurt you. Your bodily autonomy is removed from you in a way that we generally only experience as adults if we’re being sexually assaulted. And a lot of women HAVE been sexually assaulted and so they find this difficult experience far more difficult. But we don’t discuss this. And we don’t discuss gynaecological surgery or the often dreadful traumas and damage experienced by women in childbirth because that’s a bit distasteful. And we don’t discuss how the trauma of medical procedures affects our relationships with the people around us, how it’s not necessarily this great bonding experience where people rally ’round and help you. Quite often you keep things to yourself because you don’t want to distress children or older family members, or because if you DO tell them the truth you will end up having to cope with their stress reaction, and that will take priority over coping with your OWN. Sometimes it ends your marriage. Ultimately you are an animal, an emotional being more than a rational one, going through a traumatic physical experience. It is likely to affect you beyond your visible scars. You’re likely to need more support than a surgical stocking afterwards.

If we treat medical intervention solely as a logical process, a necessity that we must all cope with in some sort of post-Victorian-brutalist denial, traumatic or repeated experience of it can change you, and your idea of who you are, and the ways in which you relate to others.

“Hello I had fifteen surgeries. And my name’s Marvin.”

In that order.

*Not real name.

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About chiller

Rachel Coldbreath spent 20 years working internationally as a technical specialist on large data collections for law firms, before becoming disabled. She blogs on a variety of topics from the news and politics to gardening and how very annoying it is, being disabled. Habits include drilling holes about 1mm away from where they ought to be, and embarking with great enthusiasm on tasks for which she is neither physically nor intellectually equipped.
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22 Responses to About surgery and its scars. [TW]

  1. Lebeautemps says:

    From very minor experience, I agree with every word. Christ, I was mouthing “Go Girl” after every paragraph.

  2. jenphalian says:

    Thank you for writing this. I cried. And maybe tomorrow I’ll make an appt for the ultrasound I was supposed to get last month.

    • chiller says:

      Oh, I do hope it helps you. And don’t put up with any nonsense. You know your body better than anyone else. Good luck. x

  3. Hamletrabbit says:

    Yes. Thank you.

  4. mrslant says:

    Rachel, do you want to make a million quid? Write your autobiography. Oprah’s book club, guaranteed…

  5. philo says:

    Awesome piece of writing.

    I have to say in my experience it’s not just surgery but in every area of medicine that you find these doctors. Most UK doctors are not fit to bear the title doctor. They are poorly selected and poorly trained.

    We shouldn’t have to go privately to get adequate care, and we shouldn’t have to rely on gatekeeping GPs for access to secondary care.

  6. Nancy Apple says:

    Hugs
    Xx

  7. Pearl Wheeler says:

    I would read it…

    Thank you for sharing this with us.

  8. Lilian says:

    I have had lots of surgeries, and they have all been traumatic in some way – but nowhere near what you’ve experienced. I am so sorry. My experiences of the NHS have been (mainly) good. I have had crap GPs but eventually found a practice where there are at least 3 helpful, kind and wise doctors. The sense of relief I have about this cannot be underestimated. Cannulas (or any needle) in the hand hurt like [rude word]. I have veins that run away as well. Totally identify with the being touched by people you don’t know – and being hurt by them. I am not a person who likes to be touched by anyone, really, and I think my childhood experiences in hospitals have a lot to do with that. Even when people are nice to you, the experiences still change you, even if only making you (me) unable to properly identify with what being ‘normal’ is. Isolating. And you’re right, it’s not about choosing to be ‘brave’ it’s about wanting to stay alive and/or have a reasonable quality of life – I don’t think that’s a choice for most people. Apologies for any incoherence!

  9. Tanya says:

    I’ve been trying to think of what to say, how to comment, that will be appropriate to the heart-wrenching openness of what you’ve written here…I can’t find the right words.

    What you said about bravery and honesty is beautiful and your descriptions of the painfully dismissive attitude of so many medical professionals really struck a chord.

    I’m going to shut up now cause, as I said, I don’t feel like I can find the right words. I just wanted to say something to acknowledge the powerful effect that reading this today has had on me.

  10. backwardslion says:

    Pretty much nothing I could say would seem appropriate here. I knew some already, but not to this sort of detail. And this is, well, everything I expect to read from you, star that you are.

  11. Capojop says:

    Thank you for writing this and sharing this. If I may, sending hugs that arrive on cue when most needed. I’d send a memo to the cats…but they know what to do already.

    In my own small way though – I find that it is horribly hit and miss as to whether a doctor will listen to what you are actually saying about your own body or whether they will dismiss you as crazy or simply toe a financially expedient line. My problems have thankfully been minor – but I know far too many people where the absence of basic listening to the patient has repeatedly endangered lives/ slowed the path to recovery. .

  12. rmwk100 says:

    Amazing description of the physical and emotional results of trauma. I’m right with you in this one. If you want to be in touch, I’m available via rkirksite.wordpress.com XXXXXXXXXX

  13. huma121 says:

    Your honesty in your writing is second to none. You write your truth so these circumstances, as horrific as they are, do not crush you. Long may your spirit remain strong. Hx

  14. iHijinx says:

    Feels really very odd to press the ‘like’ button but it’s true. You write truthfully and passionately and thats why I read you. Thank you for sharing. I know your honesty will help a lot of people, if only to make them feel less alone. We share every happiness but hide our pain and magnify it with solitude. Why is that?

    I’m so very sorry you have had such terrible experiences and wish you health and happiness in abundance.
    X

  15. Fles says:

    I imagine that was either difficult and painful or easy and unburdening to write. Quite possibly both. Whatever, thank-you for the insight, the openness and the honesty – you are extraordinary, impressive and heart-breaking (not necessarily in that order).

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