Do I have to be brave?

Saturday November 10th – 39 days since diagnosis; 17 days after surgery

driving

First drive -post surgery

Yesterday I ventured out alone. I drove for the first time since my surgery and did some food shopping.  If you had happened to see me in Sainsbury’s you wouldn’t know I had cancer or that I was recovering from surgery.  I look very “normal”.  I am unremarkable, indistinguishable from all the other shoppers – well perhaps the purple streaks might attract an additional glance or two.

I found myself thinking about all the other “normal” looking shoppers and what challenges they are facing.  We do not know each other’s challenges, what lies beneath the outward persona, or behind closed doors.  I know more than most the challenges that people face, because of the work that I do.  Yet I have underestimated what living with challenge, ill-health, loneliness, rejection, trauma, loss or abuse can actually mean.  I pride myself in being able to tune in, on being empathic and non-judgmental – yet we cannot truly “know” what it is like to walk in another’s shoes, even when we have shared experiences.

This week I have found immense strength and support from friends and family, and from many, many people I have never met.  In particular, a group of women who share the experience of vulval cancer with me.  Most are further along their journeys. Their advice, caring words and knowing has helped me with my recovery.  Their shared laughter and humour has made each day just a little easier.  But they do not know what it is like to be me – any more than I know what it is like to be them.

I read about these women’s challenges and am in awe at how they are coping and raising awareness so that other women do not have to live with what they are going through.  I am told by friends that I am “an inspiration” – that I am brave and courageous with my open candidness.  But today I don’t want to be brave.  Despite the love and support of friends and family – and strangers – I feel alone, vulnerable and terrified.  I didn’t want to get out of bed.  I didn’t want to bother having a shower.  I couldn’t face finding an unbruised spot on my belly to give myself my daily heparin injection.  I just wanted to stay there – and wallow in self-pity.  Is that so wrong?

I am finding this cancer thing just a tad too much.  I had adjusted to a life where I would grow old alone. I wasn’t fearful of this – I enjoy my solitude.  I have a few good, close friends, can socialise as much as I feel the need and do not have to compromise, or adjust, to accommodate an “other”.  I’d just about laid the (present day unacceptable) conditioned childhood expectations of finding “a man” to take care of me to rest.  But suddenly, facing an uncertain future alone, the independent, strong woman, being brave … it just all feels so very, very frightening.

bacon.JPG

bacon butty

As I lay listening to the torrential rain, watching the skies clear, the blue painted with wispy white clouds – I shifted my butt, showered, performed my ritual blow drying of my nether regions, pinched my belly, injected myself and came downstairs to fortify myself with a bacon butty.

I know the logical trigger for today’s morose state is receiving details of my next appointment at the hospital: Friday 16th November.  The day when I will find out the results of the tests on my tumour.  The day I will find out what happens next.  I cannot change any of this … and I am scared.

So in the meantime, I will do what I can to distract myself.  Today I will go for a short drive, a stroll, soak up the wonders of nature for a while, share in some banter with friends and strangers alike, watch some rugby and Strictly Come Dancing, eat a rib-eye steak and gratefully receive all the kind wishes and messages of support which are so generously given.  I will relish the love that I have in my life – my parents, my sister, my children and close friends.  I will strive to remain positive – but brave?  Not today.  Maybe I can try brave again tomorrow ….

You can find out more about vulval cancer at:

 

You can follow Vulval Cancer Awareness Week on Twitter:

purple.jpg

#knowyourvulva

#vulvalcancer

#vulvalcancerawareness

#knowyourvulva

 

 

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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