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A Life Less Lost: Chapter 21

...The devastating news, that we have tried to block from our minds but is clear to see, is that neither the radiotherapy nor chemotherapy is stopping the growth of the tumour. In order to save his life, James will have to have an above-the-knee amputation, as soon as possible...

Kimm Walker’s account of her teenage son’s battle with cancer contains the ultimate in anguish, but embedded in her narrative is an assurance that there are ways of coping with the direst situations.

*

" call heaven and earth to witness against you this day, that I have set before you life and death, blessing and curse; therefore choose life, that you and your descendants may live, Deuteronomy 30:19

James is due to have his fifth round of chemotherapy and we wait to be given the results of the re-staging tests. Howard has taken the morning off to be with us. I feel sick, my icy skin sweats. I can smell fear's sour stink. We want a miracle. James' leg has continued to swell, he is drawing into himself. Pain and poisons rob him of his appetite and sparkle. He is bone thin; his eyes are dark and flat, skin waxy.

The news is mixed. There is still no sign of cancer anywhere else. We cling to this morsel. Months of learning have taught us that metastasized cancers are more difficult to treat.
The devastating news, that we have tried to block from our minds but is clear to see, is that neither the radiotherapy nor chemotherapy is stopping the growth of the tumour. In order to save his life, James will have to have an above-the-knee amputation, as soon as possible.

Because of his age, James must give his consent. He cannot be forced to have the operation, even if it means he will die without it. We are to return to see Dr Edwards on Monday, in case the swelling is oedema from the radiotherapy but we suspect this is really only a tiny buffer of hope to ease the shock for James.

We're sent to see another consultant, at a different hospital, about artificial limbs. She is very detached and officious. Her sentences are hard and clipped. 'We will fit you for your prosthesis within a week of your surgery.' 'It takes several weeks to make it up once the measurements are taken.' 'It's more difficult to learn to walk with an above-the-knee amputation.' No, you won't be able to run or do the things you can do now.' On and on she goes, nailing pessimistic words and phrases into us. I hate this woman, this stranger. I'm terrified she'll persuade James to give up, to refuse to have the operation. I can't stand it any longer.

'Why are you being so negative? People manage with artificial limbs. He will be able to walk, to lead a normal life.'
'I don't want James to think it will be easy and he'll be up and running straight away. That will only make him frustrated and depressed.'

And this is supposed to spare him from depression? I wonder. I want to tell her that she will have to have an amputation tomorrow and see if she wants every scrap of hope and optimism snatched from under her. But I haven't the strength. A swamp of cold dark fear is closing over me.

We meet a youngish physiotherapist, as we stagger from the consultant's office. He is cheerful and bouncy, exactly what we need.

'How old are you, James,' he asks.

'Fifteen.'

'Well the good news is you'll probably be eligible for a mobility allowance and the DVLA will allow you to begin to learn to drive a year earlier, at 16.'

I want to hug this man and clutch at this information like a buoyancy aid.

James won't talk about any of it on the way home. Gradually, over the weekend we see glimpses of what his thoughts are. He's convinced there must be some other way and that his dad and I are behind this rush to take his leg off. He spits angry words at us, blaming us for not trying hard enough to find an alternative. He believes he will never be able to lead a normal life, get married or have a good job. He draws pictures of one-legged people and leaves them lying around the house.

His friends are marvellous. Where I would have expected teenagers to avoid anything this scary and unknown; they visit, phone, bring cards, gifts and words of encouragement.
I manage to make an appointment for James and David to see a psychologist on Monday afternoon but when I tell David, he runs away. Eventually, he comes back and reluctantly spends about 15 minutes with Mr English. Afterwards, he talks to me more than he's ever done before and I try to reassure him about how important he is to James and how very proud we are of him.

*

The teenage years are difficult for everyone. The transition from child to adult is seldom a smooth glide, as we try to discover who we are as individuals and where we fit with our peers and in the community. It's probably not the easiest time to have a seriously-ill brother or lose a leg or a mother.
Just as I'd once talked with my mother in the seclusion of my bedroom, I began to share my thoughts and fears with God, after her death. As a child, unburdened by concerns over how to pray 'properly', I just told Him everything, thanked Him for the simple blessings I'd begun to appreciate and asked Him for help with my problems. Despite the comfort this brought me, grief would still overwhelm me at times.

Anxious for my dad, I tried to manage my feelings and help him as much as possible. I found I was beginning to know my earthly father in new ways too. He began to talk to me about ordinary domestic things.

One evening, when I was studying in my bedroom, Dad came in with a white envelope in his hand. Somehow he looked like a beaten old man and a trembling little boy at the same time. Never one to discuss his innermost thoughts or feelings, I could see he needed something from me but I didn't know what it was. Thoughts fluttered against the walls of my mind, tiny frightened birds flown in through a window and unable to find the way out, trapped.

He tried to speak, 'Your mom... I...' Then he set the envelope down on my dresser and went out.

It was a birthday card, flowery and sentimental, proclaiming love always. I hadn't realised it was her birthday. Mom reminded me of these things. I was forced to take another faltering lurch towards growing up and learned to mark the special days of others.

As 'big sister' I tried to comfort my brothers. Keith, at twelve years old, seemed to have turned to stone; he didn't shed a tear at the funeral and didn'twant to talk about it. Always a quiet, self-contained child, he withdrew further. Charlie, only eight, just seemed bewildered.

As was fairly typical at the time, my parents had only insured my dad's life yet were committed to the new house and business on the strength of their joint salaries. With my grandmothers taking it in turn to help out, three traumatised children and serious financial difficulties, my dad repressed his own grief and struggled on.

He was not the sort of person who could live comfortably without a companion. At 37, tall, with dark wavy hair and deep blue eyes, he was as sociable as my mom had been. After a while, in desperation, he began dating. This was not something my brothers or I found easy. Being a very private person and of a generation that believed that 'children should be seen and not heard', he didn't discuss the situation with us.

On one particular day, Dad had been called away for a short while and his date was left out of sight, at home. The quarrels between my brother and I were seldom physical but for reasons that are lost in the quirks of time, I found myself sitting on top of Keith holding his hair to the floor.

'I'm going to kill you,' he growled menacingly.

Realising I couldn't sit there all day; I rolled off him and curled up into a ball.

Leaping to his feet, Keith grabbed my hair and kicked me full in the face then ran off, appalled at what he'd done.

With an anguished scream, I ran howling to the bathroom with blood streaming through fingers held round my nose. Rushing through the door I came face to face with the terrified woman cowering in the corner, clutching a towel in front of her like some sort of shield.

Unsurprisingly, we never saw her again.

Despite our unconscious attempts at sabotage, fifteen months after my mother's death, my dad remarried. Nicki was eleven years older than me and eleven years younger than my dad. It didn't help our relationship when I learned of the impending marriage from her seven year old daughter. It can't have been easy for Nicki starting a marriage with four children and lots of baggage.

I already did the housework in exchange for the horse I rented and Nicki frequently added the responsibility for the children's dinner. As newlyweds, she would often take my dad back to their room to share their evening meal privately. I felt I was losing the father I was just getting to know. Instead of the appreciation I had always received from my mother and grandmothers for chores well done, there was either indifference or criticism. In my more melodramatic moments I imagined myself as some sort of Cinderella figure.

The hardest part, though, was the unpredictability and mood swings brought on by drink. Alcohol had never figured highly in our home, my mother had an allergy to it, but Nicki liked a drink. Seldom overtly drunk, it would transform her intelligent insecurity into cruel sarcasm. I felt she was an alcoholic because she drank all day, from a morning orange juice and vodka to a late nightcap, but this wasn't generally recognised for another fifteen years.

One helpful thing Nicki did for me was to take me to a specialist about my tonsils. I'd frequently suffered from 'strep' throat, tonsillitis and other throat ailments. The worst time was when I had to miss a Christmas concert for which I had been rehearsing a solo part for months. Nicki was concerned that I would continue to suffer whilst away from home and it might interfere with my studies when I went to university.

The specialist used a giant Q-tip or cotton bud, dipped it in what he said was a type of acid and touched it to various spots on my tonsils. It didn't hurt at all, apart from the urge to gag, and I was told that it would create scar tissue reducing the possibility of infections. It was certainly a less traumatic treatment than a tonsillectomy. In fact, it has proved to be very effective and I can only remember a few throat infections in the past 40 years.

She also took me to another specialist. For years I had suffered severe cramp as part of my monthly cycle. The black moods, irritability and fatigue seemed to be getting worse and lasting longer. The doctor did a fullexamination and concluded that I was anaemic. But when we were alone, Nicki challenged me to admit that I was no longer a virgin. She told me the doctor had confirmed it. I felt frightened and betrayed. For a start, it wasn't true unless there was something in the facts of life that I didn't know or understand. Could a doctor discuss things like this with my stepmother without telling me? What would my dad think? How could I prove my innocence? All remained unanswered.

In fairness, Nicki did try to make us work as a family. She generously included our relatives from my mom's side, in celebrations and encouraged us to keep in touch. There were many kindnesses and thoughtful deeds. And I did want my dad to be happy and understood that I would, hopefully, be off to university and my own life in a few years. My brothers seemed to get onwith her so I determined to make the best of it.

**

To purchase a copy A Life Less Lost click on http://www.amazon.co.uk/s/ref=nb_ss?url=search-alias%3Dstripbooks&field-keywords=A+Life+Less+Lost

And do visit Kimm's Web site http://kbwalker-lifelesslost.blogspot.com/


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