A constant state of flux

Friday 7th 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 16th 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.

knicker beast

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 3rd December.  Yesterday, the 6th, 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.

E_lpXobIQByZAodwrRhnsPfBKGltaNyCMb05HlcrtCAaSe6zXtESax7esImZvzr_Ifq0xck_VRWMd7fHz0kwUeOQJbN360Mm6M59lBnjva9mKlCEtUwyTR2PfR7Bh0-S5-HAMaMuzpu17mBByzOVaCpAvHgAGNXIUl08ZwdbC_FvadWvDzlIdCj4BUBut 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!qE_aWiNDFsy5LMphwu-TIvhDRZx98KOubazoebKw1aQvgFyYMDKDR4jmx2BG1zx43UUAUT5Yw1J-rf53xZ8PZjAwdPL7WXA2W1ZCIypXWvkUuen_5EUMxa1z1_L41zxITKFlcIx0HKgZbCjw0nPHj7mUxTHwhv0K-OVkZZmShGi29Bh6x45KhPLrwR

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.

ptzgrbotczaomj6bohoi7nkavzlxnj7xsmiwic-l1qftsrgummtd3wklwbwe5paskdhm_r358u9vd1cd_pnqwyvnlvyb5y6cvuzbrksgtsu5ktyug5hq9vzvptcxqpq0toqa-s398enjjky6vopbt_ear8hi0m07avgrtfn8g-xxqjbnd0mbbvnnc.jpgWith 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:

 

4 thoughts on “A constant state of flux

  1. Your painting is beautiful! How talented you are! We also see a dove of peace in the painting. My wish for you is that this predicts your 2019.

    I ABSOLUTELY love your filing cabinets! Perfect colours.

    Remember, I can be in Wales in a couple of hours anytime you want me to.

    Xoxoxo Linda

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  2. I’m so sorry to read what your experiencing, I was looking to connect to you for my own personal problems in family law. I was directed to look you up by pretty much anyone in Wales looking for an expert in your field.

    Regarding your personal fight I would urge you to research of cannabis oil, I believe you would qualify for its proven benefits in relation to cancer. I wish you all the very best and strength in your battles. Xx

    Like

  3. Pingback: A very uncertain future: continuing my vulval cancer journey (part 1) | Dr Sue Whitcombe

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