The day I was given an unexpected 'vagina-ectomy'

After a radical hysterectomy for cervical cancer, doctors now call Emma Jane's vagina a 'vault'. She wants to reclaim it ...

After a radical hysterectomy for cervical cancer, doctors now call Emma Jane's vagina a 'vault'. She wants to reclaim it on her own terms. Photo: Supplied

 This is a story about a surprise vagina-ectomy. It's also a story about an abnormal pap smear, not one but TWO types of cervical cancer, and a supra-pubic catheter that was also super public. But mostly it's about the medical profession running off with my vagina without even asking or buying it a drink first.

It all started a year ago when I decided to mark the end of a relationship with a ritualistic suite of STI tests plus early pap smear.

I'm a stickler for keeping pap smear dates and this one was six months early. So imagine my surprise when the doctor rang to say that – while my privates were a syphilis-free zone – I had tested positive for a relatively rare type of cervical cancer.

Salvation came in the form of the special people in my life, rallying round me and my daughter like a huge, human doona.

Salvation came in the form of the special people in my life, rallying round me and my daughter like a huge, human doona. Photo: Supplied

Remember all those "brave Kylie battles breast cancer" headlines back in 2005? Well, I didn't feel brave or battley about cancer at all. In fact, I lost five kilos in a fortnight because there was simply no room to fit food around the all-consuming panic and fear.

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Rigorous surgeon-shopping ensued. But no-one was able to offer anything more reassuring than "dunno-til-we-have-a-bit-of-a-dig-around".

As an added anxiety-bonus, trauma from the past meant that people doing scary and painful things to my lady parts was triggering to the nth degree.

Nicole dropped everything she was doing and jumped on the first available international flight with nothing but an ...

Nicole dropped everything she was doing and jumped on the first available international flight with nothing but an overnight bag. Photo: Supplied

Plus there was the whole single-parent-of-a-seven-year-old-girl situation. "Just give me 11 more years," I kept imploring deities I didn't believe in. "Just let me get her to the other side of 18."

Also: Oh please god no I don't want to die.

My first surgery was designed to be diagnostic and possibly also curative. It turned out to be neither. A week after I checked out of hospital, the surgeon told me her attempts to cut out my cancer had failed because… well… heaps more cancer.

There were five simple things about my cancer she didn't know: how much, what kinds, how advanced, where else, and how to treat.

What's more, I was banned from having the scans and surgeries that might shed some light on the situation until I'd healed from the first operation. The fresh internal wounds might yield false positives. Also, as another surgeon put it, going in with a scalpel at that point would have been like attempting to "cut through wet cardboard".

In short, I was going to have to wait at least a month before anyone could do a single other medical thing. My requests to be placed into an induced coma or cryogenically frozen for this period were denied.

Salvation came in the form of the special people in my life, rallying round me and my daughter like a huge, human doona.

Nicole, an ex-partner living in the US, dropped everything she was doing and jumped on the first available international flight with nothing but an overnight bag. She stayed by my side – sometimes sleeping on hospital floors – for three whole months. (Also she used Photoshop to whip me up an actual cancer card I could play as I saw fit.)

Other besties came bearing cheer-up frittatas, trashy DVDs, electric blankets, fresh rosemary sprigs for tea, and an ancient Country Women's Association cookbook with a recipe for mock whitebait patties made from brains and anchovy syrup.

A friend of a friend recommended a male "spiritual gynaecologist" who might be able to reiki the cancer right out of me. I laughed and laughed.

An older woman with ovarian cancer – another friend of a friend I'd never met – sent cash in an envelope to help pay the staggering medical bills. I cried and cried.

Then finally, f i n a l l y, I had a positron emission tomography (PET) scan which indicated the cancer might be operable – though chemo and radiation were still on the cards.

On October 23, after much fasting and laxative swallowing, I had a thing called a radical hysterectomy. This involved the removal of my uterus, my fallopian tubes, half my allowance of ovaries, a whole bunch of pelvic ligaments and lymph nodes, a substantial "tissue margin", as well as the tumours which, yes, turned out to be plural.

In addition to the rare adenocarcinoma the doctors knew I had, the surgeon discovered A Whole Other Type Of Freakin' Cervical Cancer which had been growing happily away without once announcing its presence in a pap smear.

After nearly a week in hospital, I went home in a wheel chair with embolism stockings on my legs and a catheter tube sticking conspicuously out of a hole in my groin. I was on five prescription pain killers, needed daily injections, had stitches from one side of my abdomen to the other, and couldn't even sit up in bed without help.

Eventually the surgeon rang saying he reckoned I could get away without the chemo and the radiation. Eventually my bowel and bladder stuttered back to life. Eventually I was able to hobble round the block (though several times I was mistaken for a dementia patient).

The recovery has been slow, painfully slow, and a year later I still don't feel like I did before. I'm grateful to be alive, grateful to all the different medical and non-medical people who did their bit to help keep me in the world.

But I don't feel the same.

There's a gloomy weight and sense of dread I just can't shake. And every three months, I have to go back in for tests to see if the cancer has come back, and every time it feels like my life is in the balance all over again.

Then there's the whole issue of my MIA vagina.

Physically it's still in place. But linguistically it's gone – at least to members of the medical profession who tell me I no longer have a vagina but a 'vault'.

Please note that this is not just what they say quietly in their private, unreadable handwriting on referrals and scripts. It's what they say to my face when they're telling me to relax back into those relaxing gynaecological stirrups that are always so incredibly relaxing.

For the medical profession, no cervix = no vagina. Apparently it's a road-to-nowhere thing.

Friends have tried to put a positive spin on my de-vaginafication by pointing out that vaults are secure places containing many precious artefacts. But I'm not buying it. After all, it's my lady parts that are precious to me, not the stuff I might decide to put there.

Anyway, to celebrate my one-year cancer-versary, I've decided to try to reclaim what I can of my pillaged private parts.

And while I'll miss being able to make my friends snigger by telling them their secrets are going "in the vault", I'm #takingbackmyvagina. Starting with the names professionals are allowed to call it.

'C--t' is still my preferred term. Snippa, patatina, yoni, zizzi, pepa, bajingo, coochie, cha cha, skiddly bop, ya ya, punani, and even va-jay-jay, I can live with.

But the vault is officially closed for business.