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:

 

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Do I have to be brave?

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

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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.

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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:

 

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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.”

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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.

 

 

Men are inherently dangerous – aren’t they?

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Image by Giovani Blank on flickr.com

Last night I went to bed seething over the ignorance and bigotry of Andrea Leadsom so publicly outed.  I did what I am encouraged to do … I didn’t over-react and engage my mouth before putting my brain in gear. I slept on it.  Well, slept is a gross exaggeration.  I tossed and turned and tied myself up in a duvet.

My anger arises from my experience in working with children – hundreds of children. Children who have been damaged.  Some damaged by the actions of their mother; some damaged by the actions of their father.  Many damaged by similar ignorant, unfounded societal beliefs as those espoused by Andrea Leadsom – that men are inherently dangerous by virtue of their gender.

I awoke considering whether doubling the dose on my blood pressure medication was a good idea – but I came down on the side of therapeutic writing. Here goes …

 

Dear Ms Leadsom

I was extremely disappointed to read your comments in the press that employing men to work with children puts children at an increased risk of abuse.  Sadly, I meet such ignorance on a daily basis.  The misconception that men are inherently a danger to children permeates my work.  I’d like to introduce you to some of the children I have worked with.

Jack is eight years old.  He hasn’t seen his father for two years. Well, that’s not quite true.  He has seen him – in the supermarket, at the football, driving around town.  When he does see him, his mother encourages him to shout such niceties as “Fuck off you wanker” and to throw stones at his car.  Jack’s mother has alleged that his father physically abused him and his siblings.  She doesn’t just allege this, she tells her children this on a daily basis.  She tells them that daddy doesn’t love them, that he can’t take care of them, that he abandoned them, that he hurt them.  She tells everyone – the schools, the social workers, her friends and family, her GP.  She posts it all over social media.  Jack can’t recall his dad hurting him – but it must be true, because mum says so.  And mum wouldn’t lie would she?  And his dad isn’t around is he?  It must be true. And he isn’t allowed to come to the school is he?  So he must be a really nasty man.  But Jack’s dad did not physically assault Jack. It is another year before Jack’s father is fully listened to.  Another year before he is believed.  Another year before Jack and his brother and sister are moved to his care because of the persistent, ongoing emotional abuse they have experienced in the care of their mother. 

Then there is Elsa.  Elsa is eight years old too.  Elsa tells me she is sad, that she doesn’t have many friends.  When I ask her about her father, Elsa becomes fearful and anxious.  She tells me she hates her dad; she wishes he never existed.  He hurt her when she was a tiny baby she tells me, he threw her down the stairs. Elsa doesn’t see her father very often.  He left the family home four years ago and has been in the Family Court ever since trying to secure regular time with his three children; Elsa is the eldest.  Elsa has seen her father just twelve times in the last four years.  Their time together has always been supervised.  Each time she sees him, Elsa’s mother quizzes her in the minutest detail.  What has she eaten?  Where has she been?  What did she do?  Who was there?  Did daddy touch her?  Where did he touch her? Did he put his hand down her knickers?  In the past four years Elsa has been subject to four police and Social Services interviews to ascertain whether her father has sexually assaulted her.  Each time her mother raises an allegation, Elsa is prevented from seeing her father. Elsa’s dad doesn’t know how much longer he can carry on going back to court.  He is heavily in debt.  He earns minimum wage and has racked up a legal bill of £35,000.  He is scared to be alone with Elsa and her siblings now.  He is scared to play with them.  He asks his partner to change nappies.  He is fearful every time he gives them a cuddle.  He doesn’t know how much more he can take and he is fearful of the long term repercussions for his children. 

Jackie is thirteen.  Her attendance at school has plummeted – it is now below 75%.  Jackie’s dad is concerned. On social media she is writing about her sexual activity, her sleeplessness, her referral to a psychiatrist, hearing voices, her paranoia, her lack of friends, her-self harm, her mother’s mental health, her alcohol and drug use, staying out all night.  Jackie’s dad informs the school of his concerns.  The school have concerns too.  In fact, they have been holding meetings about it for the last six months. They didn’t include Jackie’s dad because Jackie’s mum told them there was a Court Order in place denying him contact.  There isn’t.  Jackie’s father contacted his daughter’s GP about his concerns.  The GP refused to discuss Jackie with her father, he needs Jackie’s permission.  Jackie’s permission is not forthcoming and her GP refuses to place any of her father’s concerns on Jackie’s records.  Jackie’s father contacts Children’s Services.  They investigate and agree that Jackie is a Child in Need.  They don’t bother to communicate this to her father, they don’t keep him updated.  Jackie and her father had a great relationship, but Jackie was not allowed to tell her mother that.  She was not allowed to tell her about the things they did together.  She was not allowed to talk about her father.  Jackie’s mother often cancelled “contact” for no apparent reason.  Jackie never stayed with her father overnight or spent a Christmas, birthday or Fathers’ day with her dad. Jackie never went to her paternal cousins’ birthdays or weddings.   Jackie’s mother would not allow her father to telephone her, or her to telephone him.  When Jackie got her first mobile phone, her father asked for her number so that he could call her and text her.  Jackie refused – her mother had said “no.”  That was two years ago, the last time her father saw Jackie.   

Men are not an inherent risk to children, Ms Leadsom.  The perpetuation of such a belief in society impacts on an objective assessment of evidence and allows the actual abuse of children to remain undetected and unchecked.  The fact is SOME ADULTS present a danger to children – perhaps their own child, perhaps other children.  This risk is not specific to the gender of the perpetrator of harmful or abusive behaviours. 

Yours sincerely

Dr Sue Whitcombe
Chartered Psychologist
HCPC Registered Counselling Psychologist

I’ve struggled for some time with a wish to speak out, to raise awareness of the plight of the children with whom I work – not just in academic circles.  These children are at risk from the response and the behaviours of their teachers, their doctors, their child minders, their social workers – the legal process.  Far too often, there is a discriminatory response that mothers and women are less likely to be a danger to their child than their father is.  This generalised, prejudicial belief puts individual children at risk; it causes psychological distress which can last a life-time.

Encouraged by the words of the Vice President of the BPS, Jamie Hacker Hughes, at the recent Division of Counselling Psychology conference, I am finding  my voice.  There is an inherent difficulty for me in how to speak out whilst maintaining the confidentiality essential in the work that I do.  The vignettes above, are of course not individual children; they are composites of the hundreds of children I have worked with over recent years.

I’m not sure if writing this will have the personal therapeutic effect I hoped for when I stumbled, tired out of my bed this morning.  If, however, this challenges the ill-informed, discriminatory and prejudicial views of the likes of Andrea Leadsom in some small way, I’ll take that as progress.

Shadowman

My resolutions for this year were minimal. Having ended an arduous 2014 in a state of exhaustion, my commitment to myself was to take time for me –one day a week where I do NO work. I have taken to “pottering” with a little difficulty – the decision to switch off seems much simpler than its execution. Spending my days with distress, trying to launch a business, juggling tasks and ideas – how am I supposed to just switch all that off? I know – why not scout the “What’s On” section for some ideas?

So yesterday I dragged myself away from my laptop to Middlesbrough Town Hall to watch Yangchin, a musical ensemble playing instruments from around the world – £3 plus coffee and cake. Not my usual thing, but in the spirit of adventure (about as adventurous as I get), I adopted the “why not?” attitude.

As I sat with my friend before the event drinking coffee and eating cup-cakes, I felt myself become heavy with thought and emotion. Giving myself time “off” seems to have had the effect of allowing those existential thoughts to creep in – my life, its purpose, my accomplishments and failures, my relationships. On reading the program I noted that this ensemble was a group of children and young people – aged 10-18. Almost instantaneously, I became quite overwhelmed and tears started to well. Thoughts of old age, ill health, death, loneliness jostled for prominence in my mind.

I realised that I was starting to anticipate my “empty nest”. My assumption had been that I would relish the freedom and opportunities brought by living alone. But over recent months, as my 17 year old youngest has become more and more immersed in her friendships, I have begun to feel side-lined, almost superfluous to requirements. My logical brain tells me this is the way it should be. I have been a good mum, prepared my children for life. They are independent, resilient, confident in their individual ways; they know that I will always be here for them if and when they need me. Emotionally, I feel rejected; abandoned.

As the tears continued to prick, and thoughts whizzed around my head, I desperately tried to compose myself – the performance was due to begin. A few deep breaths, focus, calm down, this is ridiculous…… By the end of the first couple of bars I was sobbing uncontrollably. The thoughts, emotions and reflections were unstoppable.

Music is important to me – more than anything else it has the power to influence my mood. I have an eclectic taste, but I am not knowledgeable or snobbish about my music. Paul Weller’s “Hit Parade” was the soundtrack of my recovery from depression. The music that Yangchin played touched me in a way that I cannot express in words – I know only that I was overwhelmed with emotion. Yet it was not just the music itself, it was that it was being created by these young people. The music, the performers, my existential thoughts, the work I do – all melded together and overwhelmed me.

As a mum, I had been to many such an event to watch and support my three children. Many a day at dance lessons, competitions and shows. Chess competitions, tennis lessons, gymnastics, orchestra, choir, guitar lessons, kick boxing, football. I can remember vividly my son’s first try – playing out of position in the backs; and my daughter’s too – scored from a driving maul from beyond the 22 yard line. I remember my tears at my daughter’s first dance solo; my anger at the parents on the side line as they heckled my son refereeing his first football match at the age of 16; the incredulity of my friends when I gave up tickets to a Who gig to watch my daughter swim 25 metres in a race that she could never win. I have such amazing memories – I am so, so lucky.

As Yangchin’s music continued to move me, thoughts of my fortune were juxtaposed with thoughts of misfortune of the parents I work with on a daily basis. Parents who do not see their child perform music, dance, play sport – who may not even know what their child’s interests and hobbies are. Parents who would give anything to freeze on the touchline to glimpse their child at football training; to watch their child’s performance as the third sheep in the school nativity; to experience the anxiety and pride as they crack riding without stabilisers for the first time.

I had just about stemmed the tears by now, but the thoughts of parenthood snatched away and denied were still swimming around. Perhaps it was the acknowledgement of how privileged I feel to have had the opportunity to be a mum and how easily that special relationship can be stolen. The loss, the isolation, the loneliness of alienated parents dominated my thoughts when a young performer, Natasha Graham, took up her guitar and performed a piece that she had written herself – Shadowman. I have no knowledge of her inspiration for this piece – but in me it stirred such deep emotion and thoughts of my impending empty nest alongside the emptiness and loss that parents apart from their child inevitably feel.

As we left Middlesbrough Town Hall and stepped into the dusk, the huge, soft, fluffy snowflakes danced around us and settled on our hair. Our footprints meandered behind us as we took selfies and giggled, just like two children. Does snowfall not always take us back to our own childhood? It had not been the afternoon I had anticipated. I’m not even sure it fulfilled my need to “switch off”. But it is an afternoon for which I am immensely grateful. It reminded me of how lucky I am to have such amazing memories. Whatever the future holds – they will always be there to sustain and fortify for me. It reminded me that I am on a path I choose to follow – even if I did not seek it out, much as the families and people I work with did not seek out their path.

Thank you Yangchin. Never underestimate the power of music and your talent to move and reach that which cannot be expressed in words.