A very uncertain future: continuing my vulval cancer journey (part 1)

A year ago today I lay on my back, spread my legs and my life changed for ever.  Yes – that had happened before, most notably around New Year’s eve in 1989 when I conceived my son.  But this was a whole new ball game – one in which I could see no joy, just fear, doom and gloom.

On 2nd October 2018 I was diagnosed with cancer of the vulva.  I was thrown into a storm of bewilderment and took to writing about my journey.  Writing, sharing and a good dose of humour are my coping strategies.  You can read about my diagnosis, my fears, some joy in earlier posts.  I haven’t written a post since 7th December – just two months after my diagnosis.  At that time, I was waiting for my second round of surgery, looking forward to Christmas and with some positivity, speculating on making it through to Christmas 2019. Christmas

Well I’m still here – very much alive and kicking – and with an overwhelming desire (need?) to hit the keyboard again and share the story of my genitals with the world.

Following what was, for me, an idyllic Christmas, surrounded by the people I love the most, 1st January brought with it the most basic of goals. No grand ambition to lose 6 stone, circumnavigate the world or be the catalyst for world peace.  My goal for 2019 was to make it to 2020 and just experience love & joy with my wonderful family. I can say, with as much certainty as most other people – I will be here on 1st January 2020.  And I have experienced so much joy & love this year that at times it overwhelms me, bringing more than a few tears now as I reflect.

On 23rd January 2019 I underwent my second surgery.  I had more tissue removed around the cancer site on my vulva, and left and right side lymph nodes removed in my groin.

In February I received my diagnosis – poorly differentiated squamous cell carcinoma of the vulva, FIGO stage 3A (ii). Diagnosis letter edit I was strangely calm at the news. I had done my homework; I knew what to expect.  Trying to make sense of my life armed with the diagnosis though – totally new territory.

According to my consultant, my situation is “favourable”.  That’s it.  No further treatment for now, regular check ups – but no prognosis either.  I understand that.  I understand that my cancer has spread, they “hope” they have removed it all – but I understand cancer too.  I know that 50% of women with my diagnosis don’t make it to 5 years.

As a psychologist, a scientist, I know that population figures do not translate to individual life expectancy.  I know that no-one can tell me, just now, how long I have left on this earth.  I know that the size of my tumour, it’s depth, it’s spread to my lymphatic system, its poor differentiation, my general health are all significant factors.  I know that I have to find my own way of making sense of what is a very uncertain future.knicker beast

My way of making sense is to adopt that five year time frame: if I have 5 years left to live – how do I want to live my life?

(coming up – part 2 …..)

You can find out more about vulval cancer at:

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