I’ve been very unsure about this whole “five year thing”. In the main part, it’s irrelevant; I’m here, things turned out (mostly) ok. But being told – at any point in your life – that you have a five year life expectancy is a little bit hectic. And I guess I’m realising that hearing that you have five years, nearly five years since, feels like it does have some kind of relevance right now.
And I’ve not written for a while.
But five years on, that “five year thing” means something.
And that saying of “it’s all good” doesn’t quite cut it. My now 6-monthly check-ups continue, and will do forever. Surgical menopause doesn’t disappear.
I’d decided not to give this 5-year thing any kind of recognition until (if) it was relevant. But I recently realised that that’s bullshit. It’s bullshit because I am checking in on 5 years. It’s bullshit because I’ve been writing about this for the last five years. It’s bullshit because life is wonderful in so many ways but it’s often – and in so many different ways – a bit more bullshit than it should be. So, I decided that putting this out there is no different to (1) what I’ve put out there before, and (2) no different to what I said – five years ago – that I’d put out there.
So, here it goes:
Five years ago today (it so happens it was also a Friday) my GP phoned me up to tell me the results from a test that I (yup, me) had requested. It was a test that she said I had no need to have. Bt it was a test I requested. To my GP’s credit – and this is crucial to the story that I am sharing here today – she said “OK. If this will make you feel better, we’ll do the test”. I’m not going to go into how messed up this is in a world where most people can’t request tests, let alone have access to a basic medical examination, not because it’s not important – it obviously is – but because I’ve written about that before and will continue to do so. Instead, this is, I guess, a wholly selfish post. It’s about me. So, an abbreviated version of what happened follows:
It’s the 8th July 2014 (the day after my 35th birthday)
Me: please will you do a CA125 test? [after a lovely GP has listened to me, given me a physical exam and we’ve discussed that she thinks my bloating and gas is likely due to a gluten intolerance]
GP: I can but why would you want me to do one? There’s nothing from my examination to suggest you need one?
Me: I know. But I’m 35 and I’ve not had a problem with gluten before. Perhaps I’m over-reacting but I am a Dr Google geek – and my fully acknowledged, persistent obsession with all things medical – means that I’ve been checking things out online and there’s enough going on for me to wonder. And to worry. Sudden onset bloating and extreme gas being the reason I’m here. I googled and I realised that from the symptoms I was being offered by Dr Google – issues relating to polycystic ovaries (alongside ovarian cancer, but who really thinks of that) – were coming up. I’ve never tried to be pregnant, I don’t know if I can or can’t become pregnant but there is enough to suggest from Dr Google that I should be checked for polycystic ovaries. That’s it. I’m an armchair scientist. An armchair hypochondriac. I read academic papers. It’s not just Dr Google. So maybe we can check. Look, it’s cheaper than a gluten test. I’ve even googled that.
GP: Ok, let’s check. If it will make you feel better and reassured, let’s check. As you said, we’re checking gluten anyway and this is cheaper. So we’ll just do both. But I don’t think you need it.
Me: Thank you, that’s great; thank you for listening. (In my head: oh my god, I’m a hypochondriac, she thinks I’m a lunatic, this is me taking advantage of the system, this is me being a privileged freak-show banging on about polycystic ovaries and symptoms and journal articles etc etc. But thank you. I feel so much better for being heard. So much better that I’m actually not worrying about all of this now. Maybe I just can’t eat bread again).
Fast forward 5 days.
Friday 12th July 2014.
About 11am.
Phone rings.
GP: Hello, is that Jo?
Me: Yes! hello!
GP: so, I have the results of your tests. You’re a bit anaemic, nothing too serious, but it turns out that you were right to push for the CA 125 test.
Me: (feeling smug) ok, cool. What’s the result?
GP: It’s 2,257
M: Ok, cool I’ve no idea what that means. Is that good, bad?
GP: ….[silence].. well, under 35 is normal.
Me: Oh! So I scored high! [slightly panicked laugh]
GP: yes. I’ve done a rapid referral for an ultrasound.
Me: oh, ok; cool [assuming this is all about polycystic ovaries]
And that was the start of what turned out to be quite the adventure. I still don’t know exactly when the 5 years began.
My decision to go to the GP on the 8th July? The result on the 12th? The first scans on the 15th? The other scans on the 17th? The surgery on the 18th? The surgeon telling me on the 19th that he thinks I have a 5 year life expectancy?
I don’t know. I don’t think it matters.
The pathology showed that I had serous borderline ovarian cancer, stage 2c. It had spread from my left ovary (later pathology indicated my right ovary was also affected), along my pelvic wall, and along my rectum. My omentum was inflammed but there was no spread beyond the pelvic area which kept it at stage 2. The tumour was large and it had spread but it was borderline. Since my diagnosis, the naming has changed to “low-grade ovarian cancer with non-invasive implants”. Everything was removed – my ovaries, fallopian tubes, womb, cervix. I was fortunate: I didn’t have typical, high-grade, ovarian cancer. And surgical menopause was a very small price to pay.
Five years ago, after a weekend camping with my family for my 35th birthday, my brother kindly pointed out that my night-time farting was out of control. This is not something you can hide away from in a canvas-walled living arrangement. This forced me to acknowledge that something I had been ignoring for a while really wasn’t right. For that, I’m forever grateful to my brother. And to the family camping tradition (it had to come in helpful at some point).
We all know when things aren’t right. But we often refuse to acknowledge it. I know I did. Listen – literally – to your body.
Bottom line: If I hadn’t listened to my bru, and if my GP hadn’t listened to me, I may not be here today.
To you both: thank you. Always. Here’s to the next five years.
jozi-ovari 
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