Friday 7^th December – 66 days since diagnosis; 38 days after (first) surgery

I have started this post so many times in the 4 weeks since my last … So much to say, yet so difficult to commit to the written word.  How to convey the emotions and rapidly cycling, fluctuating thoughts?  I begin with zest and motivation which evaporates before I have completed the second sentence. Unable to make sense to myself; how can I be understood by others?   The positivity turns into despair …

My follow up appointment was scheduled for 9:30am on Friday 16^th November.  My sister and I sat in Gynae Outpatients among some very heavily pregnant women waiting to hear what the future held in store for me.  My knicker beast’s identity was revealed … squamous cell carcinoma with grade 3 poorly differentiated cells.  My operation had been a Wide Local Excision (WLE).  The aim of surgery was to remove the tumour with sufficient margins (usually 10mm) clear of any cancer cells.  In my case, they did not get the hoped for clear margins. My tumour extended up into the vagina and touched the anal sphincter. Although the tumour itself was removed – taking further tissue would likely have had an impact on bowel function.  The cancer was also quite deep – 12mm (1/2” in old money); anything deeper than 1mm takes the classification up a notch.

So – what next?  More surgery.  The consultant plans to remove more tissue from the tumour site – trying to get better margins, as well as the lymph nodes in my groin.  Given the histology, there is a chance (likelihood?) that there will be some spread to the lymph nodes.  The operation will see me in hospital for 7-10 days … Before surgery I would need a CT scan to check for any wider spread.

I had my CT scan on 3^rd December.  Yesterday, the 6^th, my cancer nurse called me to let me know the scan was clear. I cannot fully convey the overwhelming relief which brought instantaneous floods of tears on hearing this news.  It was like the release of a pressure valve – and brought with it at least some positive thoughts of a future.

There have been times over the past couple of months where I could not even envisage Christmas, or feared it would be my last Christmas.  It matters not whether this was a rational thought or not; competing rational and irrational thoughts have been a dominating constant, taking over nearly every waking moment, and waking me when asleep.  So many fears, so many unknowns. My coping strategy is to talk, to be open, to share.  Yet the fear of voicing my thoughts lest that somehow makes them a reality was paralysing.  Alongside this was my need to protect my children from my darkest thoughts.  In part I turned in on myself.  I resorted to some old unhelpful ways of coping – including food! But I’m trying not to beat myself up.  Some of my adaptive strategies have helped – good music, supportive friends, bright flowers and wonderful essential oils.

But how to distract myself sufficiently to keep the negative thoughts at bay?  I’ve rekindled my interest in my family history – something I enjoyed very much before children, study and work took over.  It has absorbed me, given me a focus, fulfilment and brought a smile to my face.  As has my creative streak!  Armed with spray paints and emulsion, I now find myself with the time to make my home “me”!   I know purple and bright pink doesn’t tick everyone’s box, but I smile every time my eyes fall on my creations.  And those smiles are so important …

Playing with colour without being judged while being able to share experiences and process my thoughts at art therapy sessions has also been a great help.  I am hugely grateful to Maggie’s for this opportunity.   “Art” has been a bit of a nemesis for me – something for which I have been ridiculed and about which I become quite anxious.  To just be able to play with colour, with no aim or goal in mind, has been very therapeutic.  My subconscious seemed to make itself known as my playful use of water colours seemed to represent a vulva!

While I am still somewhat in limbo – just waiting for a date for surgery – and in some pain, today for the first time I feel I can look ahead and at least plan a little.  I WILL have a Christmas – tomorrow I WILL put up my tree.  I have even done some Christmas shopping.  And I now believe I will be here in 2019; witness my diary.  It may be empty until at least April …. but I am looking forward to some wonderful times and am confident that I’ll be here for Christmas 2019 too.

With thanks to Maggie’s:

“Maggie’s offers free practical, emotional and social support to people with cancer and their families and friends. Help is offered freely to anyone with any type of cancer.”

https://www.maggiescentres.org/our-centres/maggies-swansea/

You can find out more about vulval cancer at:

• Cancer Research UK https://www.cancerresearchuk.org/about-cancer/vulval-cancer
• Macmillan Cancer Support https://www.macmillan.org.uk/information-and-support/vulva-cancer/understanding-cancer
• The Eve Appeal https://eveappeal.org.uk/

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

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 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 16^th 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:

• Cancer Research UK https://www.cancerresearchuk.org/about-cancer/vulval-cancer
• Macmillan Cancer Support https://www.macmillan.org.uk/information-and-support/vulva-cancer/understanding-cancer
• The Eve Appeal https://eveappeal.org.uk/

You can follow Vulval Cancer Awareness Week on Twitter:

#knowyourvulva

#vulvalcancer

#vulvalcancerawareness

#knowyourvulva