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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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:

 

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

 

 

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

 

 

 

 

 

 

 

 

 

 

Peeing like a sumo wrestler …

Tuesday October 30th – 28 days after diagnosis; 6 days after surgery

It was four weeks ago today that I was given the news I had cancer.  A short period of calm descended, before the strange surreal limbo kicked in.   My limbo was in part characterised by thoughts of doom and gloom.  Now, I’m a psychologist; I know a thing or two about catastrophizing.  Catastrophizing is an unhelpful thought process – thinking or believing a situation or experience to be far worse than it actually is.  For me, on being told “cancer of the vulva”, what I heard was:

  • op tableYou will die on the operating table and this will leave your children traumatised for the rest of their lives
  • If you don’t die, the cancer will have spread to nearby organs and you will have to have your bowel removed and have a stoma
  • If your bowel isn’t removed, you will be doubly incontinent

I am an intelligent, (usually) rational woman who reads widely and educates herself about many matters – both professionally and personally – in order to be better informed and take some ownership.  None of these scenarios featured in any of the literature or research papers I read.  Yet they became very real, dominant and troublesome thoughts which fuelled my anxiety and paralysed me. These irrational thoughts dissipated somewhat on consultation with my surgeon the day before surgery. They returned with a vengeance accompanied by uncontrollable sobbing and hyperventilating as I met with the anaesthetist just before surgery.

sumoI lie here tonight, six days post-surgery, somewhat bemused by my reflections on the past four weeks.  I have little pain.  In fact I am generally in less pain than I was prior to surgery.  The “must have” waterproof mattress cover has not ventured out of its packaging.  Sitting is still a bit of a no-no  – that IS painful – as is coughing, sneezing and over exuberant laughter.  I have mastered the art of peeing standing up.  Not like a regular bloke, more a semi-erect semi-squatting sumo wrestler pose – less chance of pee stinging my particular wound.  I was a bit zealous with the advice of using a shower head to keep the wound clean initially; getting in the shower every time I had a pee.  This transformed into peeing while in the shower (“dirty, dirty habit” as I seem to recall telling at least one of my children!) for which I feel no shame.  I’ve curbed my 10-12 showers a day habit down to around four.

hairdryerEach shower is followed, as instructed, by a “blow dry” of the wound with a hairdryer on the coolest setting.  My new ritual continues with lying on my bed, legs apart.  Thoughts (or memories) of any carnal pleasure in absentia, ousted by the sheer pleasure of just being naked and knowing this is the best medicine for a healthy healing wound.  Knickerless I remain, as advised by the surgeon and other vulval surgery survivors on Twitter! Those extra big M&S knickers may never see the light of day again.  The two sizes too big jogging pants, bought to accommodate the imagined huge continence pads and massive swelling, will be returned unopened too!

fartThe thought of having a pooh was terrifying, if somewhat distantly familiar.  I recall my fear as a new first time mum, post episiotomy, that if I stood up or tried to open my bowels the entirety of my internal gastrointestinal system and bladder would end up in the toilet bowl.  Apparently I was susceptible to catastrophizing 28 years ago!  In reality, it is fine.  I am taking some laxatives and drinking plenty to keep things moving.

Other than a very short stroll, I haven’t ventured out of the house yet.  I tire very quickly.  Today was the first day on which I felt emotionally low.  I guess the limbo is still there – minus the catastrophizing.  I feel unable to look too far forward, to make plans.  What I need now is the diagnostics, the prognosis and a road map for treatment; that may be another 2-3 weeks.

Family …

Saturday October 27th 00:30am  – 23 days after diagnosis; 55 hours after surgery

21Tonight you will find me on my bed with my legs akimbo under firm instructions to let the air circulate around my wound (I have had four showers in the nine hours since arriving home from hospital).  I was in much the same position exactly 21 years previously, as we welcomed Amy Susan into the world. I am unsure on which occasion I experienced most pain, but whatever pain I experienced 21 years ago was almost immediately eclipsed by the joy Amy brought to all our lives.

tazAmy was a whirlwind, a Tasmanian Devil, always smiling, laughing, curious, doing.  She hasn’t had the easiest of times; she has wrestled with much yet developed into the most amazing, compassionate, wise, young woman.   The last 18 months have been especially difficult.  Her brother had testicular cancer, her grandmother skin cancer and then to top it all off – I go and bugger up her birthday celebrations by being called in for vulval cancer surgery.

Amy and I have a special bond; we have spent a lot of time together.  We have shared a lot – and there is still little that is not shared between us.  I know her biggest fear is me dying, and I know she feared me dying on the operating table on Wednesday.  I did not want to “bother” her, or Emily or Joseph, with my surgery.  I did not want to interrupt their busy lives or cause a fuss.  I seriously considered not telling them.  But my wise sister queried what if the worst did happen ….

bunsSo Joseph and Amy were here with me when I went in for surgery.  On the eve of her birthday Amy welcomed me home from hospital with home baked cinnamon buns.  Tomorrow Emily will arrive and spend a few days with me.  My mum and dad live close by and my sister has been a rock on which I have had to depend in a way I am very unused to doing. The knicker beast is banished – for the time being at least.

Whatever the future holds, I have been blessed with the most wonderful life in which my family and my children have always been at the heart.  I know only too well from the many families I have worked with that this is a special gift to be cherished dearly.  And cherish it I do.  The unconditional, sometimes unspoken, love we share as a family has sustained and nourished me through some incredibly difficult times.  Such love has wondrous properties.  I am a very lucky woman.

Kinky Boots versus Kill Bill: the night before the knife

Tuesday October 23rd (just before midnight) – three weeks after diagnosis

consent.jpgAn air of calm has descended; I’ll take that for however long it lasts – probably until lunch time tomorrow.  Today I met with my consultant surgeon.  He calmly explained my procedure – the purpose, the risks, my right to choose … and asked me to sign on the dotted line that I understood all that he had said.  Tomorrow afternoon he will skilfully wield his scalpel to carry out a wide local excision of my vulval lesion.  The purpose of this procedure is assessment, diagnosis and treatment.  The risks are excessive bleeding, infection, damage to adjacent structures (particularly nerves and blood vessels), wound infection and breakdown, DVT and pulmonary embolism. In my head he is Uma Thurman brandishing a massive sword to annihilate the nasty knicker beast. kill bill.jpg

The consultation was followed by the taking of blood, an ECG and instructions on fasting (nothing after 6:30am), and that was it! Out by 12:30 with instructions to return around 11 the following day.  So – what to do with this unexpected afternoon of pre-operative freedom?  Well lunch seemed a good start.  Pasta at Prezzo on the seafront at Mumbles with my sister, courtesy of Meerkat 2 for 1.  It was a glorious day – sunny and warm andmumbles comforting.  A gentle stroll along the seafront calmed and distracted me.  A mooch around a lovely little gallery and the local shops, an unexpected glimpse of the gem which is Oystermouth castle, followed by coffee and cake.  I held on to that preciousness for as long as I could, until I could ignore the nagging, gnawing of the knicker beast no longer.  Time to head home and have a rest.

And rest I did. A massive 3 hour nap. I was still relatively calm, though somewhat preoccupied with an urgent desire to evacuate my bowels which was not accompanied by any bodily urge.  The thought of having my vulva sliced and stitched, and still having to pee and pooh just did not compute.  How is that even possible?  How much agony will I have to endure? How in the hell do you keep everything clean, heal and recover?  Amongst the messages of good luck and warm wishes were some gems on Twitter from @gencritlou and @hurtieh .  I am so appreciative of these two women who took the time to respond with their supportive words and advice following their own recent surgery.

I am nearly 5 weeks post my own vulval cancer surgery and it wasn’t anything like as bad I’d feared. I got through and so will you.

I’m 2 weeks post WLE, pain wasn’t too bad, […]  All in all, my bits are less painful than they were before the surgery! I hadn’t realised how uncomfortable I was ALL THE TIME!  Spent most of the first couple of days lying down, short walks around the house etc. I just had to be careful and slow sitting down, getting out of bed etc. Showered lots, just plain water, no fancy dancy gels etc.

Advice absorbed, I sought to distract myself for the evening.  After much trawling through my on demand services, I settled on Kinky Boots. What a gem!  I was taken to kinky_boots_postcard_9822.jpganother place, the fictional, yet all too real, challenges of the lives of other people accompanied by a fabulous soundtrack.  Note to self: download favourite music before tomorrow.  Kinky Boots was followed by a heart to heart chat and plenty of cuddles with my youngest daughter who arrived home, with my son, a little after midnight.

This time tomorrow, the knicker beast will be gone.  This will either be a total victory, or the first win in a series of battles.  I cannot change the trajectory that is laid before me, but tonight, thanks to all those wonderful people around me – including those who have reached out across the web – I feel in a better place to take on the challenges ahead.

 

 

Sarah Millican, Sigourney Weaver and the parasitic knicker beast

Tuesday October 23rd (the wee small hours) – three weeks after diagnosis

prisonI’ve lived the last two weeks in some strange existence of near physical immobilisation brought about by uncontrollable racing thoughts all competing for my attention.  The result – I was totally overwhelmed.  I found it difficult to leave the house, to reply to emails, to prepare for what lay ahead.  I lived in a limbo, imprisoned by thoughts of doom and gloom, and my failings, as a mum, to protect my children from this shit.

Becoming a mum, a little over 28 years ago, was the making of me.  There has been nothing in my life to match the pure joy and meaning my children have brought to my life.  I think I was a good enough mum – far from perfect – but my children were always there at the centre of my life, and still are, even though we are scattered across this land.  I would have given anything not to put them through the anguish they are experiencing just now.

red weightMy appointment with the oncologist just 11 days ago was rather surreal.  It was almost as though I had an out of body experience.  Who was this poor women, who could not stop crying, who was hyperventilating, who could not string a sentence together?  I thrust my typewritten notes at the surgeon and relied on my sister to fill in the gaps.  He attempted to assure me with scientific fact that my tumour could not have grown at the rate I had said – this was my perception, because I was more aware of it.  I gave him the benefit of the doubt.  Hey – I’m a psychologist; I understand subjectivity and perception.  Now 11 days later I still feel like I have this rampant parasitic beast growing exponentially between my legs.

Sigourney-Weaver-as-Ripley-in-Aliens-alien-aliens-8255352-800-1213.jpgMy inner voice transformed into Sarah Millican delivering an endless barrage of fanny jokes.  This seemed fitting given the endless barrage of one bollock jokes delivered in the style of Gary Delaney by the best man at my son’s wedding last year.  It further transformed into some heavily armed hero type – think Sigourney Weaver in Alien or Bruce Willis in Die Hard – screaming “Die you mother f**ker” at that which lurked in my knickers.

The oncologist, following yet another impressively quick peek at my crotch, confirmed that this needed to be gone and I would be brought back for surgery within the next four weeks.  It may be sooner – but four weeks was the usual.  Did I have any questions?  Yes, yes, yes!  Could I process the information he had given me and formulate a coherent one?  Could I hell.  What I know is that the tumour will be removed, it will be tested, I may need more surgery and/or more treatment.  It is uncomfortably close to my bum hole – and that may cause complications.  There is a 50% risk of the wound breaking down through infection.  No wonder I spent the next 10 days in mental turmoil.

kisspng-cartoon-stock-illustration-mobile-phone-clip-art-call-the-woman-5a9a42e990f0f7.6901019815200591135937Then yesterday, around 2:30pm, I had a telephone call.  Was I sitting down and did I have a pen?  We have a date for you – it’s Wednesday 24th.  We need you to come in tomorrow at 10am. Meltdown.  Absolute meltdown.  Shaking, crying, snot all over the place.  Fear, anxiety – vulnerable.  I rang my calm, collected sister; her no nonsense, straightforward talk calmed me.  Well calmed me enough so that I could do what I needed to do.  Some urgent emails – cancelling this and that, postponing something else.  Then calling the children – to be met by their anxiety and fear.  More paralysis – unable to think.  What do I need to do?  A quick dash to the late night supermarket to get the essentials – a bar of Galaxy to gorge myself on before the nil by mouth kicks in.  An evening with Victoria Wood while I gathered my thoughts and allow some calm to descend.

My alarm is set for 7am.

What happened to me?

food plate chocolate dessert

I have cancer.  It is newly diagnosed.  I am shit scared.  I keep bursting into tears. I have palpitations and trouble catching my breath.  I shout, I rage, I swear.  I self-medicate with food.  I tremble and shake.  I have trouble remembering, finding words and concentrating.  My sleep pattern is fucked – I survive on a series of naps.  I worry, ruminate.  Now – you can diagnose me with a number of mental health disorders if you wish, but my “symptoms” are a reasonable (if unhelpful) response to a very real threat.

It is World Mental Health Day.  I sit here today with all these “mental health symptoms” alongside my physical diagnosis of vulval cancer.  But I had these symptoms before my diagnosis too.  I lived with these symptoms for more than thirty years.  They were largely hidden from view.  If you knew me back then you would not know about my symptoms.  Well – you may have guessed I self-medicated with food, or you may have judged me to be fat and lazy.  There were times I self-medicated with alcohol too.  You may have thought me to be unreliable or antisocial.  I often turned down invitations to social events – or just didn’t turn up.  I was often “on the sick” with minor ailments.  I changed my job frequently.  You may have thought me to be “moody.”

gender

You would not have seen me crying inconsolably as I feared the day ahead.  You would not have seen me hiding in the toilet throwing up, my stomach screaming with nerves and dread.  You would not have seen me sitting in my car for half an hour trying to pluck up the courage to go into the supermarket.  You were not inside my head witnessing the incessant self-questioning and castigation.

I never told anyone about my “symptoms” because I didn’t know they were symptoms.  They were just me, part of my personality, who I was.  I functioned.  I got by.  I thought this was life – just how it was.  Much of the time I will have appeared sociable, competent and happy.  I was happy – some of the time, particularly when I was with my children.  Yet I lived my life feeling as though I was a freak, I didn’t fit in, there was something inherently “bad” about me.

Would a diagnosis have helped? Did a label of “depression” help when I could no longer hide my symptoms, when I could no longer function, when I could barely get out of bed to take my children to school?

Perhaps it did.  That label did bring with it some acknowledgement, some validation.  It was a gateway to therapy and, eventually, to understanding and self-acceptance.  I learned that I was not “bad.”  I learned that I was courageous. I learned that I had coped the best that I could with the hand that I had been dealt. I learned that my behaviours were a response to the experiences I had early in my life.  It was not my fault.

Today, I am stronger for my experiences and my understanding.  Today I can yield to my symptoms, without fearing I am going “mad.” I can have a bad day.  Today I have healthy coping strategies.  They will get me through the difficult journey ahead.  There is nothing “wrong” with me – though from time to time I am “not ok.”

adorable baby beautiful bed

I look forward to the day when it is universally acknowledged that mental health difficulties are as much, if not more so, a response to life’s challenges – the crap that we encounter – as they are to some failure in our biology.  We already know how our experiences can change our biology, the structure of our brains.  More so – we know what “good” looks like in nurturing healthy children, which is where our focus needs to be. While my experiences have made me the now resilient, positive, fulfilled, authentic me – I would not wish that thirty years of a life half lived on anyone.

 

 

Wonder Woman and the Big Knickers

Tuesday October 9th – one week after diagnosis.

I have been overwhelmed by the response to my first blog post.  Such warm, thoughtful, supportive messages from friends, colleagues and people whose lives I have touched – some who I have never met.  It is these messages that have taken me aback.

“You have inspired me so many times through your posts”

“So sorry to hear you news your an inspiration to all now get your big girl panties on and kick cancers butt”

“You are a strong women, that has inspired so many troubled individuals. Myself as a teenager included in that list you help.”

“Your blogs are so inspiring and heartfelt and they raise so much awareness…”

“Not a truer word spoken. U did help so many young people and made school that tiny bit more bareable.”

wonderwomanWho is this Wonder Woman I am reading about?  She is far removed from the woman I see when I look in the mirror!  I do not recognise her as the woman who climbs into my bed each night filled with self-doubt.  She does not resemble the simple soul who just plods through life trying not to cock things up and hoping she is just about doing ok.

jellyWhile I wait for my existential crisis to fully kick in, sitting here like a quivering plate of jelly, intermittently bursting into tears, these messages calm me, give me succour and even bring a smile to my snotty, tear stained face.  While the debate continues on the good and evil of social media, thank you – for taking the time to message me. Thank you for letting me know I have made a difference.

There is a message here for everyone though.  We do not know how we touch people’s lives.  Our actions, our words, our presence can do harm and do good.  I know I have done harm in the past, particularly in my younger years – and for that I am truly sorry.  But I hope, by being true to myself, by being respectful of others’ experiences, I now mostly “do no harm.”  I am privileged and humbled to have shared in so many people’s journeys in the last thirty years.  If I have been able to make a positive difference, that is because those people have taken a risk and allowed me into their life and connected with me on some level.  Any betterment is because they took that risk.

telephoneI’m living a strange surreal limbo just now.  Just waiting … waiting to know what I can expect of life going forward.  Can I expect a life going forward? What happens next?  When you are frightened and just want a simple answer to a simple question, everything seems like a hurdle and becomes so overwhelming.   Trying to physically speak with someone at the hospital was nightmare. I was snared in a vicious circle of answerphone messages.  How many people does the NHS employ? Can one of them not pick up the phone and answer a question?

My wonderful GP acknowledges the shit “patient journey” explaining that he has no “secret numbers” through which he can access information either. I was a wreck, shaking, crying, helpless – and yes, angry and frustrated.  Luckily I have my sister.  We have spent more time together in the last week than in the last fifteen years.  I am grateful for her coolness, her focus, her distance (though not indifference).  She did what needed to be done via Lisa, or Debbie, or someone in “Complaints” and got the answer I needed. I will know nothing before 10th October.

big knickersWith that news came some calm, some purpose – a shopping trip to prepare for all eventualities.  A purple fleecy dressing gown, purple slippers and big knickers.  Not just any big knickers – these are M&S big knickers …….  Having successfully lost 4 stone in the last couple of years and proudly squeezed myself into sexier (!), briefer briefs, the big knickers thing is a bit of a bummer.  To be fair the sexier, briefer briefs have seen no action in the last few years.  Whatever the future holds I am guaranteed a lot more going on in my knickers over the next few months.  Admittedly – not the sort of action I have dreamed of – but action there will be.

Action there is now, as this thing grows and bleeds; a daily reminder that I am “not ok.”  An Elastoplast and hug to make it all better just ain’t going to cut it.  So, shit scared as I am, I am also surrounded by positive cancer stories.  Paul (my ex) and his dad’s recovery from prostate cancer nearly 15 years ago.  Joe, my son, and his recovery from testicular cancer in January this year.  I can say now I never fully appreciated what they went through – how could I?  Joe bravely shared his cancer journey, giving hope to others.  I will, less bravely, share mine.  Yes, I hope to raise awareness of vulval cancer, but in truth this is my self-indulgent way of coping and I’m not apologising for that ….