A year ago I was just waking up from surgery. In fact, it was probably about now that I was shouting obscenities at the ever-patient nurses from the recovery room as they wheeled my bed over what felt like The Biggest Bump in the world into the lift. I cursed, I screamed. Then we had to do it all over again on the way out of the lift at the other end (I did later apologise; I blame the anaesthetic). I had woken up thinking that someone (the surgeon, I guess) had chopped my legs off. The reality, it turned out, was that they were strapped into some fantastical gadget from out-of-space that is inflated and pumps air around your legs to prevent blood clots. Nobody had told me that this would happen and, being me, I thought that I no longer had legs. So it was only much later – after the anaesthetic high had started to drop – that I reflected, in a druggy stupor (morphine pumps are a wonderful invention), on what had just happened.
Twenty-four hours previously, I met with my surgeon who, after a consultation, asked me what I was doing tomorrow and (after quickly realising that this beautiful, PhD-holding surgeon, older married man was not in fact propositioning me) agreed to surgery the following morning. Everything happened very, very fast: I saw my GP on the 8th July and had a CA125 blood test (at my request); results came back on the 11th July; ultrasound on the 14th; appointment with surgeon, CT scan, and another ultrasound on the 16th; and a radical hysterectomy on the 17th. Surgery was more challenging than they anticipated and I lost a fair bit of blood, and received a transfusion. On the 18th, my surgeon explained that things were found to be a bit more hectic than the CT scan had indicated and that I should now prepare myself for a Stage 2 Ovarian Cancer (OC) diagnosis, along with a 5-year prognosis – he did mention that I should hold onto the 10% chance that the tumour would be found to be borderline…… On the 22nd July as I was getting ready to leave hospital to go recuperate at my parents house (and, in my mind, get ready to start chemo in a few weeks) I got a phone call from the surgeon: I officially had a borderline ovarian tumour (BOT) diagnosis and no further treatment would be necessary. Unbelievable. Long-term, regular monitoring would be key but prognosis was excellent. Monitoring would pick up any recurrence of BOT, or any occurrence of typical OC.
Now, 12 months later, it seems even more unbelievable. I have a beautiful 34cm scar, annotated with perfectly symmetrical dots from the 28 staples that were removed 10 days after surgery. I started oestrogen replacement 11 months ago and, as I’ve written previously, those little patches (88 to date) are a fantastic invention: after a month of surgical menopause, I’ve had basically no symptoms and any risk of early-menopause-associated osteoporosis, heart disease or loss of cognitive function are removed (although i’m less certain about the latter….).
I’ve learnt a lot about this rare and confusing diagnosis and learnt even more about society’s perceptions of a (now) 36 year old unmarried woman who has not made her own babies. I’ve learnt that normative ideas around family and the biological role of women pervade even the most sensible discussions around health, wellbeing and the celebration of life. And I’m learning how to challenge and engage in this difficult terrain (I’ve written about this here and here).
I’ve reflected more than I normally do on the injustice in the global health system and how my experience – associated with having a private medical aid plan in South Africa – differs so greatly from those reliant on the public sector, particularly in my context. I’ve been made acutely aware of what access to information and research-based evidence means for making choices about my health and wellbeing. I’ve become even more aware of the privilege I sit with as an academic with access to the relevant literature and the skills to read and process it with, and – where I struggle to understand or want additional opinions – the social capital I have to engage with the medical experts I know. I have learnt to be an advocate for my own health and that of other women in a way that is different to my day job.
Most importantly, I’ve been reminded of how fabulous my family and friends – near and far – are; I couldn’t have done this without you all. And this includes the 95 incredible women that I’ve never met in person with whom I share this strange diagnosis and journey.
I guess I can’t help but reflect that I’m now one year into what was, for several days, a five year prognosis. I’m looking forward to what’s ahead.
I am one lucky gal.
jozi-ovari 
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