A short story about cancer and how it fucks you up

Today marks five years since I underwent a radical vulvectomy for vulval cancer. Here’s a condensed version of what my family, friends and I were in the midst of in October 2007.

In 2006, I received a phone call from the gynaecologist I’d been seeing since I was 16. She said that she had bad news. I immediately deduced that I had cervical cancer, but while the abnormal growth of cells in my cervix was high, there was a far more concerning matter. Pre-cancer had shown up on my vulva. I was referred to a gynaecological oncologist (there was such a specialty? A broken cunt doctor?) and for the next ten months we tried to keep the cancer at bay by using ‘non-invasive’ treatments so I wouldn’t have to have surgery or chemotherapy.

Soon enough, Efudix – a topical chemotherapy – was off the menu. The treatment had reached the stage where strips of skin hung from my vulva. The skin would peel away or fall off in my underwear, so by the time we worked out that the Efudix wasn’t having any effect on the level of pre-cancer, my vulva looked like minced meat*.

The cancer was becoming more aggressive and I had to face the possibility that I’d have to have major surgery. I remember not being shocked or particularly worried – possibly because I was on such a high doses of opiates where everything was ‘okay’. It’s where you get to a point and your whole family could be killed in a car crash, but you’re so strung out  that that would be okay, too.

So it was all okay – cancer was going to ruin my vagina and in the end, it would nearly claim my life.

My sister Nikki, holding my hand in ICU

In October 2007, I faced the bleak and bitter force of reality in the form of being told that to survive, I would have to have a ‘skinning’ or ‘radical’ vulvectomy. In layman’s terms, this meant that the skin from my clitoris to my rectum would be excised (cut) and that I’d need extensive skin grafting. It also meant that I’d have to have my bowel redirected in the form of an ileostomy – a poo bag. There was a fair chance that the skin graft wouldn’t take because of the level of immunosuppression from transplant and that I was diabetic. For so many nights after the surgery, I would have panic attacks in the dark that I would be taken back to theatre to be ‘re-grafted’ because the skin grafts hadn’t taken.

Not long before my surgery, my parents and I had gone up the coast for some respite, but I had an appointment back in Brisbane with my oncologist and the plastic surgery team. The surgery was going ahead despite my lung transplant consultant Peter Hopkins telling me that what I was embarking on was both dangerous and on an immense scale. He said that I really needed to think about my options. But the thing is, I had none – that was the problem.

I remember Peter saying verbatim – ‘this is huge surgery and there’s every real possibility that it will kill you’, and I remember what I said back. He leaned forward in his chair, resting his arms on his desk with a sense of urgency. I’d never seen Peter like that before, and we’d known each other since 1996. He was the register treating me at the Mater when I got called up for transplant. In the days after my surgery, we would form an unbreakable bond, but the problem was, I was out of options and I wasn’t going to lay down and let cancer kill me. Not after thirty years – and that’s exactly what I said to Pete. He was resigned to the fact that I was making a do or die decision.

Dad had driven Mum and I down to the Royal Brisbane, and this day was nothing like we were expecting. By the time we saw the plastics (plastic surgery) team, it was closing in on 5pm. We waited for my Oxycontin prescription. The pharmacy assistant was impatient and agitated. It had been such a long day. Mum and I had waited for nearly five hours to see the doctor and afterwards, we were mired in shock. We were called in and we entered into a conversation where words ricocheted around my head after jumping off tongues. I became almost bodiless in the room with its searing blue linoleum. My primary dis-ease had given  me an absence of fear, but after this conversation, this ceased to be:

‘We’re going to have to take all of the skin off.’

Skin off.

‘We’ll probably have to remove your clitoris.’

Let me die on the table.

‘We’ll need to re-direct your bowel, so you’ll have an ileostomy for at least three months.’

A poo bag.

‘If you don’t have an ileostomy, you’ll die from infection.’

I’ll die.

‘We need to take all the skin.’

You already said that.

‘We have to remove the skin from above your clitoris, right through to the very back of your anus. You’ll need extensive skin grafting.’

All of this skin. So much skin.

‘We’ll take the skin from your inner thigh.’

Skin from my thigh on my vagina.

‘Because you’re immunosuppressed and diabetic, there’s a high risk of the graft not taking, so we might have to do more grafting.’

More skin.

‘This is what we will do.’

No other treatment, no other choice.

Thank you Doctor Lily Chen. You were such a subtle news breaker.

* happy to report everything works wonders post-surgery.

22 thoughts on “A short story about cancer and how it fucks you up

  1. I’ve heard your incredible story before, but each time I hear the details I am struck again by the raw, pure, anguished beauty of your writing and your experience. I am humbled to have heard your story and am even more humbled to be your friend………..from across the ocean here in USA,, yet still a friend who cares and admires you and all you bring to this way of living life to its fullest.

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  2. faaaark.
    second time I’ve read this story (different version); still makes me wince, feel faint, feel with you – Let me die on the table.
    I’m so glad you didn’t.
    unimaginable, to have a surgeon cutting away such vital, personal parts of you. but I’m glad you survived; a cousin of my mum’s had cancer of the vulva and didn’t survive. Fuck cancer.
    and yay for Carly-Jay, and your amazing, beautiful family. Team Metcalfe!

    surgeons – well, clearly some of them are fab human beings as well as skilled at healing with a knife (your Hotkins, obviously, and a friend has had tricky tumours removed on a couple of occasions by Charlie Teo & is a big fan of the man), but some of them, like Lily Chen, are definitely stronger on the technical side than with the people skills.

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  3. wow……have only met you a little bit…for like a minute in thescheme of life…and I think you are one awesome chickie babe. Brave and gorgeous with so much love to give. And to receive…..here is a little bit of love coming your way from me……Sheridan

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  4. Spent 5 minutes trying to articulate my thoughts but there are no words. Just wanted to let you know that I have read this and to thank you for sharing.
    As someone who has spent a lot of time advocating for women trying to keep politicians and doctors far far away from their vaginas, I respect how traumatising this must have been, however necessary.
    Much love, sister.

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  5. Carly,

    As difficult as this was to read, I have to thank you for sharing it so honestly and fearlessly. It was very eye opening and powerful. Would you mind emailing me when you have a moment? I have a quick question for you.

    Thanks so much,

    Cameron

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  6. Carley I’ve been in the medical field my whole life and have never heard of this type of cancer(and I’m a female!). My eyes are wide open now! WOW. When I read you short story above all the time thinking holy shit, and well yeah we can get cancer of any body part…..duh…. Thank You ma’am for survive hell and tell your story!

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    1. G’day Sherry 🙂 Thank you for being a medical hero!! You’re right – the cancer I had is usually reserved for ‘older ladies’. I was 30 with a broken c*** and it all felt very wrong. Like I was living life in reverse. Thanks for your lovely comment – I do my best, and am so grateful to be here living my dreams xoxo

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