Women are dying from embarrassment ..

Tuesday November 6thfive weeks since diagnosis; 13 days after surgery

This week is Vulval Cancer Awareness week. I would like to encourage all the women out there to get to know your vulva.  Women are dying from embarrassment – and that is just plain sad and stupid.

Vulval cancer is a rare gynaecological cancer, one of five female gynaecological cancers which also include cancer of the womb, cervical cancer, ovarian cancer and vaginal cancer.

In the UK:

  • There are 1339 diagnosed cases of vulval cancer each year
  • 460 women die from vulval cancer every year
  • Crucially – 69% of cases are preventable – but embarrassment, lack of training and awareness mean that women do not present to their GP when they have symptoms, and symptoms are often misdiagnosed or not investigated

A year ago this month, my son Joseph had begun chemotherapy for testicular cancer.  I was struck by his courage, openness and humour as he shared his cancer journey to raise awareness. Remarkably – he raised over £1000 for Movember too, as he managed to retain a limited amount of facial hair during his gruelling chemo.

Joseph’s diagnosis came just three days after starting a new job.  It felt a little like history was repeating itself when my urgent referral came the day after I started my new job. Five weeks ago today, I was told I had cancer – cancer of the vulva. I would like to emulate Joseph by sharing my cancer journey, in the hope that it will make a difference to at least one woman out there.  I know that Joseph’s story encouraged men to check themselves out – and I want all the women out there to get to know their vulva.

I was first diagnosed with Lichen Scelrosus (LS) of the vulva back in 2015.  LS is an auto immune skin condition which is correlated with an increased risk of cancer of the vulva.  My LS was mild, and kept under control with occasional use of a steroid cream. Earlier this year I had a flare up of my LS, but also felt that something else wasn’t quite right – I had a tiny, annoying little sore, which bled from time to time and didn’t heal. My sore grew bigger (quite quickly) to 3cm x 2cm and became more painful and didn’t stop bleeding.  After treating me for a potential infection to no effect, my GP made an urgent referral to a consultant gynaecologist who told me it was cancer and that there was no point waiting to do a biopsy.

On October 24th I had a Wide Local Excision (WLE) of the vulva – removing my knicker beast and hopefully a clear margin of tissue.  As I feared, the cancer was larger than could be seen on initial examination and extended up into my vagina and was sitting on the wall of my anal sphincter.

afternoon tea

Afternoon Tea

I feel remarkably well less than two weeks after surgery.  Today I went out for afternoon tea to celebrate my daughter’s 21st birthday.  My knicker beast had been rude enough to spoil our planned birthday celebrations on 27th October.  I’m not wholly recovered, and sitting all afternoon was a bit too much for me.  I’m much more comfortable on my back ….  I get tired easily and need to take extra care of the wound – several showers a day, with careful drying

 

Emotionally I’m a bit all over the place.  I sit in limbo now waiting for results so that any future treatment can be planned.  This may be surgery, radiotherapy and/or chemotherapy.  I’ve struggled in the past with my emotional well-being and have a few good healthy coping strategies to draw on.  For me this includes getting out of the house, even for a short stroll, listening to music, talking or writing about how I am feeling and bright vibrant colours and evocative smells.

flowers

Wonderful colourful hugs from Scotland 🙂

As part of the campaign to raise awareness of Vulval Cancer, we have been encouraged to wear something purple and take a selfie.  At first I thought they wanted a selfie of my vulva – my friend suggesting a selfie stick might do the trick.  But as yet I have totally failed to accomplish this.  It all feels a bit strange down there and I am not inclined to go poking around just yet …. But as for the purple – well I couldn’t resist.  I’ve had pay back from Amy for the many, many nights that I have spent dying her hair – blonde, red, purple, pink, blue …. This week I went with purple streaks 🙂  No hardship for me – purple has been a favourite of mine for a while now.

dying

mother-daughter payback

 

 

You can find out more about vulval cancer at:

 

purple hair

purple streaks

You can follow Vulval Cancer Awareness Week on Twitter:

  • #vulvalcancer
  • #vulvalcancerawareness
  • #knowyourvulva

 

 

 

 

 

 

 

 

 

 

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