LIVING WITH CANCER

Copyright: Janine Harrington

A new day struggles into wakefulness. I wonder what it will bring as I step through the gateway to embrace the dawn. My mind wanders. But it can't go far these days. Yesterday is but a memory ... and not even that, given the dark velvet covering, with twinklets of stars the only source of light, reminding me that once upon a daydream there were good times shared. Tomorrow presents a fog of uncertainty. A nothingness stretching beyond. I have no idea how long I have left in this life. A dis-quietening thought, not because I have any kind of Bucket List or challenges I still need to achieve, nor have I a 'To Do' List requiring urgent attention. It's simply the way it is ... a certainty yet to be realised.

I have only Today. 

This hour. 

This moment. 

And it is living in this moment that provides the key, unlocking the essence of that Inner Peace.

My Faith remains the strongest part about me. I am not afraid of Death. However, it is while I still 'walk in the valley of the shadow of ...' which gives me endless cause for concern.

I was diagnosed with Cancer over two years ago. From the start, I made it clear I wanted no treatment. I believe in Quality not Quantity of Life. When my time comes God will take me Home. Just as I am. And through the journey which has evolved through these past two years and more, it is that thought alone, that belief, that certainty within that brings such Peace ... together with an almost desperate longing for ... My Time To Come.

I am ready.

My soul has already lived through too much. I have only two regrets if I am to be completely open and honest:

1. I will never know a lifetime of living with a Soulmate, feeling the true empathy, understanding, support and Love that comes in knowing and loving another so completely we become One.

2. I miss children, young children, holding and cuddling them, looking into their eyes, seeing the innocence and trust, playing with them, being a part of their lives. I will never be a grandmother, and feel again that sense of motherhood, pride and overwhelming Love which comes in watching and learning, seeing the world through a Child's eyes, being part of who they become. Always, it is a unique and privileged position ... a Gift.

I am reminded of how cruelly my own innocence was taken as a child, which is the reason I have lived with PTSD (Post Traumatic Stress) since the age of four years old when a Specialist at the hospital where I was being treated for my disabilities sexually abused me. I had no words to explain, to share the secret which slowly crept like a living, breathing entity, consuming me from within, taking over every aspect of my life. Yet at six years old, my mother thought enough of what I was saying to note in her diary of the day: 'After our hospital visit today, Janine told me 'he hurts me''. Abuse was never spoken of then. Authorities were people to be respected, even revered. They could do no wrong. No-one spoke out against them, as we do today. I had been taught never to say 'No' to an adult. Only when I reached the age of 14 did I finally take action, the only action I could, and went on strike, refusing to return ever again to that place of madness and nightmares. But nightmares didn't stop, they didn't diminish, nor did they go away as further nightmares fused with them as life struggled on. More and more I had gaps in my days I couldn't fill. Hours passed. I had no idea what was happening to me. No idea that everyday happenings triggered feelings and memories, which in turn re-opened that black box of bad memories in my mind, taking me in with them, returning me to that state of childhood, repeating over and over again what happened. I had gone through five experimental operations. None were successful. I wore calipers on both legs and feet until the age of nine, then hospital shoes. It set me apart from other children. Abuse and bullying became a way of life.

Today, going through the doors of a hospital returns me to that child state of confusion and dread. I wandering corridors, lost somewhere deep within myself, unable to find a way out, or return to the present. In technical terms it's called a 'Fugue' or 'Disassociative State', breaking from the present, living in the past. There is nothing I can do to take back control until it runs its course.

This is one reason I refused treatment for Cancer.

It has nothing at all to do with imagination, or responding to 'snapping out of it' as some people suggest. PTSD is a recognised condition following a trauma. However, I am fortunate now to have a wonderful Counsellor who surprisingly understands enough about PTSD to work on strategies to help me cope. We use Visualisation techniques ... and remarkably, after all these years, I can finally find my Peace, overlaying painful memories of abuse with a country scene of which I become a part, and which ultimately brings sleep.

Mum died of Cancer in 1996. I recall that January when she phoned to say she was bleeding, and it wouldn't stop. I drove straight over to be with her, to talk, to share. Initially, she was diagnosed with a prolapse of the womb. But she deteriorated quickly. I drove almost daily, accompanying her to hospital appointments for Radiation treatment, assessments, etc. As with many of her generation, she was a very private woman. She hated intrusive investigations, having catheters inserted. Once she was in hospital, in a bed next to a young girl with Cancer, she spent more time supporting and talking to her than anything else. She was an incredibly caring, compassionate lady. It hurt her to see someone so young struggling through Cancer, with a young child to care for. At night, she phoned, talking about how much the treatment hurt, saying the treatment was worse than the Cancer. But she didn't feel she could say 'No' or stop the procedures which, for her, became an interminable dread. Almost six months down the line, I went in search of her doctor in the hospital. They didn't want to talk about 'Death'. They couldn't even say the word. However, they had drawn the curtains around my mother's bed, effectively isolating her, making her feel cut off from the world, and particularly from the young girl she had befriended. I asked if she was dying. If so, how long did she have, persisting that she would want to know? Finally, a lady doctor took me into her room, and told me she didn't have long ... days rather than weeks. I insisted she needed someone in authority to tell her and my father who was making plans for when she returned home. When I was back at Mum's beside, she looked at me, and nodded. I knew she knew. She died 22 July 1996 in a Sue Ryder Hospice to which she was moved.

My second reason for refusing treatment therefore is related to Mum. She wasn't afraid of death. Her father taught her that as he died when she was six years old. But like me today, she became afraid of the time leading up to her death ... because of the treatment. She simply wanted to go home, and be in familiar surroundings when came her Time.

In a life where someone else has always taken control, for me, I need to know that, although I can't have control over when I die or how, I can at least have a voice.

When first diagnosed, I asked what choices I had, and to have them fully explained. Initially I accepted Letrozole tablets. Taken with my cocktail of other tablets for a range of disabilities stemming from birth, they seemed so small in comparison. Yet the side-effects were massive, immediate and devastating. I was so sick I could do nothing at all. I took them for three months, all over that first Christmas until, at the end of January, when I next saw the Specialist, not having tasted a Christmas Dinner, or been able to share in any of the festivities; I said if this was the way the rest of my life would pan out, then I would just let the Cancer take its course. And that's the way it's been ever since. But then, I wasn't prepared for simply being unexpectedly discharged from hospital, spending most of the next two years feeling abandoned, isolated, alone.

Perhaps I was being punished for saying 'NO!'

That was my first thought ... which in turn, brought memories of the Specialist treating me at the age of four years old. But then, yes, I'd wanted him to leave me alone. In later years, when I became an Abuse Consultant, supporting families in abuse, working one-to-one with paedophiles in and out of prison, I learned from them just how devious and manipulative this first Specialist in my life had been. Always, he'd spoken to my doll, never directly to me. Matron would take my mother out of the consulting room with her when she became pregnant with my sister, as she was so ill. I was left alone with my abuser. It's how Mum and I worked out when the abuse began, when finally I shared my experiences with her when I was forty years old. Always, he'd nod towards the cubicle, drawing the dark green curtains. I knew by then what was expected of me. I was a good girl. What I couldn't work out was, if I was a good girl, why did all these bad things keep happening to me? Why did I have to undress when all he was meant to do was measure one leg against the other as if the shorter one would somehow catch up? My legs were five inches different in length ... leading in later years to chronic arthritis in my spine, hips, knees and legs. I took to wearing dungarees. Five pairs of pants. My mother couldn't work out what was going on with me, as, even at school, I continued wearing layers of protection. My trust was betrayed at an early age. Innocence was no more. I didn't know what he was doing, or why, but I felt the pain, the burning sensation he caused. All the time his back was turned towards me I very reluctantly lay back on the couch, gazing at the awful aging green curtains surrounding us, withdrawing to a place deep inside, disassociating from what was going on.

Even today, almost 63 years on, it is still that shade of green that brings back painful distressing images of that consulting room, making me physically sick.

I see the Cancer as a slow train chugging along its track through my body, stopping at stations before proceeding on its way. The original growth is much bigger. Another growth is now on my lymph gland. Only a scan will show exactly how far the Cancer has spread.

I'm on a high dosage of Morphine per day, together with the same cocktail of pills I've been on for years for other disabilities. Chronic Fatigue kicks in around midday, although there are days which I need to write off altogether, so exhausted I can't even raise my arms, or walk on jelly legs outside the door. I have the challenge of a new book written as a legacy for a Veteran who recently died, offering a challenge for the New Year. And my worldwide Family of Kindred Spirits remains in daily contact ... Veterans of RAF 100 Group and their families. I thank them all for giving so much, and for who they are, what they've done, the inspiration and strength they continue to offer me.

My gift for Christmas is that Jo, my daughter, will be sharing it with me. It fills my heart to overflowing with Love.

I'm battling finance, with Disability Living Allowance having been dissolved, applying for Personal Independence Payment which has taken its place. I had thought this to be an easy changeover. However, having been on the High Level for Mobility, given I have no transport, and it's impossible to walk at all without chronic pain; unexpectedly PIP has taken away completely any Mobility payment I was receiving, leaving me only with a level of Standard Care. I appealed the decision, but that went back to the person who originally visited me and wrote a Report in which there were glaring errors, despite having an Advocate with me. So I'm now waiting for it to be heard at a Tribunal. Meanwhile, getting anywhere is impossible, unless someone is kind enough to offer a lift. Attending appointments at the Hospice means paying out a hefty sum of money to a taxi driver.

I should say that it's a Postcode Lottery as to what is available in terms of help and support. I am a great believer in self-help groups. But where I live there is nothing, not even on a one-to-one basis where people make home visits. I wish there was a group where I could meet others with Cancer to talk and share. Yes, there are Forums online. Macmillan has an excellent one. But it isn't the same as seeing someone in person. And it's the lack of seeing and touching and sharing that makes this awful sense of Aloneness all the more difficult to bear. Sometimes, all it takes is a hug. Often, there's no need for words. Just knowing that someone listens, understands and cares can be valued.



Over these past two years, I have done more writing than ever before in my life. Words and emotion pour out of me, with a growing sense of urgency to be shared. It is draining, yet at the same time immensely rewarding, offering gifts of Healing and Peace. Without the ability to write, my life would be over. So I continue on, spending time at the Hospice when I can with the Counsellor and Specialist, knowing there will come a point when I've gone as far as I'm able, but happy I will have done ALL that I can for as long as possible, hoping to have made a positive difference to the lives of people around me in some small way. 

My heart goes out to people living with Cancer. Accept it as a Journey. Live in the moment. Small steps only. I've said it before, but it's worth saying again - out of every negative must come a positive. The greater the negative ... the more that positive must be.

Copyright: Janine Harrington

GOD BLESS YOU ALL!