Narratives & Stories

Sara's Story

Sara was in her early twenties and a desk officer at her local police station when she was diagnosed with non Hodgkin’s Lymphoma.

Nothing can prepare a parent for the loss of a child. My own daughter was not a youngster when she died, but 25 – or nearly 26, to be precise. Her 26th year was full of suffering. Two years ago, Sara was diagnosed as having a rare and malignant lymphoma: cancer of the lymphatic system. It was Non-Hodgkin’s disease (Jackie Onassis also suffered from it). I remember our GP commenting at the time “if only it had been Hodgkin’s”. Hodgkin’s afflicts mostly young people and due to its cell composition, is normally curable.

The first question you ask is “Why”?” How can such a disease strike a young, seemingly healthy young women who was hardly ever ill? An outgoing, fun-loving person with the sort of smile that inevitably made everything feel better and brighter …... a former athlete, a schoolgirl country sprint champion.

Then there are the recriminations: was it diagnosed too late? Sara had complained of feeling tired. At the time we explained this so patly: she was a desk officer at our local police station and her job involved shiftwork, and we all know that shiftwork affects our body’s metabolism. There was some lower shoulder and arm pain occasionally – the GP thought Sara had trapped a nerve; we tried physiotherapy.

Sara “lived” in jeans, and it was not until I noticed that her legs seemed thinner one day that the warning bells started ringing, and then everything happened very quickly. There were tests, and finally the doctor’s chilling diagnosis. The cancer had already affected her chest glands and had spread slightly to her stomach glands, but there had been no bumps or swellings in her neck or groin as is more usual, hence no early warning.

I have always been interested in alternative or complementary therapies and initially wanted to eschew the normal treatment, intensive chemotherapy. I had nursed my mother with a rare type of liver cancer for many years and she had lived a near-normal life without the awful nausea and hair-loss that often accompanies toxic chemotherapy treatments. I had such a fear of these drugs, as I am sure everybody does – I could not envisage my beautiful, vital daughter without her blonde-streaked bob.

Sara however, had other ideas. If chemotherapy offered the chance of a cure, she had no alternative but to undergo this treatment. She had her life in front of her: she was in a loving, stable relationship with her boyfriend, Nigel: she wanted children.

I decided to read everything about cancer. We embarked on an even healthier diet, reflexology, transcendental mediation (which I still practise), Chinese traditional medicine, homeopathy and herbal medicine, positive visualisation – all these alongside the conventional outpatient treatment in our local hospital’s oncology unit.

Sara face the weekly treatments with such courage that we were humbled. Her hair came out in handfuls. Her generous eyebrows and eyelashes thinned, but her skin bloomed and she donned right, silky scarves. Our hairdresser reluctantly shaved her head of the few geriatric wisps that remained.

Anti-nausea drugs helped – at least they stopped her feeling as though she was going to throw up any minute – but that awful pervading nausea remained for days following the treatment. It was not Christmas 1993; more than three months had passed and we had high hopes that such intensive chemotherapy has worked, alongside everything else. We showered her with gifts and she had a normal Christmas, with the shiniest, greenest live spruce fir tree I had ever bought. That January we took her away for a holiday in the sun – and her symptoms returned.

Sara faced more chemotherapy. We had read that cannabis has an anti-nausea and relaxing effect, so I procured some through a friend. I had no conscience about using an illegal drug. Anybody who feels strongly about that should spend some time with a cancer patient undergoing cytotoxic treatment. Hospitals ought to be able to prescribe it. Mandy had injections and tablets for nausea costing £20 and £38 a time – the cannabis was the only drug that provided any true or lasting relief.

At the end of this period, we were informed that Sara would need an autologous bone marrow transplant. Then, it was hoped, she could be almost cancer-free, and her immune system would re-establish itself. Any residual cancer could be treated with radiotherapy.

The weeks in hospital passed, and we were hopeful. Sara came home to convalesce – she returned briefly due to an infection and was rather frail, but we still hoped and prayed. Throughout this time, Sara lifted us. It was as thought we coped well while we were with her because she was strong for all of us. But when I was alone, I nursed a palpable cold fear.

Nearly a year had passed since diagnosis and Sara underwent a high dosage of radiotherapy. She became very tired, and for the first time very depressed. “Radiotherapy blues” had set in. Her appetite, already lowered by treatment over the week, virtually disappeared and she lost weight. Another infection set in. Her breathing became laboured but we put this down, in part, to the treatment beamed on her chest area.

When we were told that the lymphomas had reached her lungs, all my past fears materialised into one massive cold lump that clawed at my throat. Sara asked me if she was going to die, and I said “No you’re not”, but deep down knew that she probably would.

She received a new kind of therapy from Australia that is designed for patients who have not responded to more normal chemo. For a few days, it seemed as though she was responding. I desperately wanted her alive at any cost: the mere thought of losing her was more than I thought I could bear. We were so close; we had fought so hard; she was too young to die; it wasn’t fair.

Her father had planned a trip with Sara to Cyprus. It was cancelled. My son, Julian returned from America. We were told she had only weeks to live. It had reached her bones too. The disease had become totally chemo-resistant. Julian berated himself for being away so much of his life. He had won a tennis scholarship to a well-known school at 13, and had travelled or worked abroad for long period ever since. He had a few weeks to get to know Sara all over again. The doctors were gentle; the nurses eyes changed imperceptibly – there was not quiet pity and no hope. We stayed with Sara night and day. The previous week we had gone home at night since we lived close to the hospital. One evening we went to leave as usual, but I stayed outside Sara’s door and watched as the brightness’ in her face dimmed and a curtain of despair came down: a tear slid down her cheek, and then I knew I had to stay beside her until the end.

Sara knew she was dying, but even when I knew she only had days to live, I could not tell her the real truth: that her death was imminent. She now needed oxygen. We took her home for brief outings, to the park, to the sea, where we basked in that small miracle of late warm October sunshine. People stared at her, looking pale, her hair growing back in Sinead O’Connor style, an oxygen cylinder alongside the wheelchair. I felt so proud of her, so defiant of their stares, and all the time my heart was breaking.

Is there a less heartbreaking time for a child to die? I doubt it. Any age is devastating for a parent. When your children grow up, you feel so much relief that they have not succumbed to a childhood disease or drowned or had some other accident: you congratulate yourself that you have brought them through to adulthood relatively unscathed. Perhaps a young dying child lacks the imaginations to plan the rest of her/his life in detail, but a young adult has so many expectations of life, the life they have only lived in part. I ached for her loss. I ached for myself, for the realisation that she would not give me the grandchildren she had wanted for me. That I would not see her in a bridal gown.

We enveloped her in love during those last weeks. I know she was worried about me, how I would be, how I would cope – even in the midst of her own approaching death, she was concerned about me. We filled her room with flowers and love; we brought in our dog and her cat, Magic, from home. There was laughter, there were tears. I have a faith of sorts, but I also believe in some of the Buddhist ways. Death is part of life and I wanted her to die with love and joy in that small, sunny room.

At the end she could not have been more beautiful. There were rose petals on her bed, a toy Paddington Bear from Nigel in her arms. We could not stop kissing her. The day before Sara died, she told me she loved me. I said I wanted to give her so much love and so many kisses. She smiled and said, “And tomorrow I’m going to have hundreds more, hundreds of kisses”.

I pray she did.

After she died, I wanted to die too. I think that when a child dies, something in you also dies. I remember once that Sara had talked of dying and felt strongly that it would be a wonderful experience. She also told me that, if I did “anything stupid”, wherever she was, she would not speak to me again! So somehow we have to continue our lives.

Sara died on October 24, 1994.

We shall spread her ashes in places she loved and countries she travelled. We did not have a funeral; we had a thanksgiving service for her life. I have contributed to a cluster of trees in Israel in memory of the love and joy she brought to us.

The hard part is getting through the days without her. “Time heals” is a favourite platitude from people. I daresay it will, but at present I am not ready for that. Her room is the same, but not the same – it is tidier. I cannot let go just yet, decorate, move on. I am not ready. Maybe one day … Her 26th birthday was on December 15. I bought her a card with a black labrador on the front – Sara had always intended to have such a dog one day. I also wrote a poem for her because I could not give her anything else. One day I’ll buy that black labrador puppy. I’ll call her Rainbow, because it was something Sara always ended her letters with: “Lots of love, hugs, kisses, diamonds, stars and rainbows”.

My daughter, Sara, died just over five years ago. She was twenty-five. It is still painful to write those two sentences. The ache, the longing to see her again, the hole …... is still there. I doubt that it will ever go away. I still weep …..... Often the tears come when I drive, almost unbidden. The come at odd moments; sometimes at night because I still wake in the early hours, not always but sometimes, and I think of her. I go over those last months. I rewind the film. Some things are more bearable – and I’m still here; I’ve lived through those years – I’ve managed to get through them, one days at a time at first, then a week, then a month. Someone once asked me “How on earth do you cope?” I couldn’t think of a reply, then I said “I get up and put the kettle on, as I’ve always done, and another day begins”. Just as it did the morning she died. It had been raining overnight. I remember, oddly enough, the puddles reflecting the clouds as we left the hospital. I wondered why the milk float was operating and lights coming on in people’s houses – my own world had stopped, had ceased to be, and it was difficult to imagine that other people’s lives were continuing as usual.

Even now, more than five years on, I berate myself for things I can’t now alter. Why did we glibly explain away her early tiredness because Sara’s job involved working shits? Why was her back pain ‘diagnosed’ as a trapped nerve? It had been a warning of something more sinister and we’d all ignored it. I remember driving her home from the hospital when the cancer had finally reached her lungs – her lungs for God’s sake, why not anywhere but her lungs? Sara asked in a quiet voice, “Mum am I going to die?” I replied “No, you’re not“ in a voice that tried to convince us both, but deep down I think we both knew. That night, I slept in Sara’s bed, aware that if I held her too close I might (again) dislodge her Hickman line. “What shall we do, Sara?” I asked. “Just give me a hug” she said. “What about the Hickman?” “Oh damn the Hickman”. She died six weeks later.

I now work in bereavement for a cancer care service. I have come to realise that we all grieve differently, especially parents, and often in one family. A few months after Sara died, my husband accused me of “seeing” him again – pointing out that I hadn’t for a long time. I took this on board, along with all the other guilt, but after we’d separated, I realised that this hadn’t been altogether true. He was an egotistical man with a need for attention and he’d found this elsewhere with a young woman of Sara’s age – he needed to blame me of course: it eased his own conscience. I found myself on the other side of the county in a country cottage, with no job and little money. I still bear the financial scars, but the more lived ones are ever present, and grief being what it is, always waiting to be re-opened.

What could have helped at the time? After Sara died, my doctor offered counselling. I refused it – I was a trained counsellor myself: somehow I couldn’t face words of sympathy from someone who could only imagine how it felt and not know. Anyhow, I have a belief that what we need are less therapists and more therapeutic people! But would it have helped? Perhaps. During Sara’s illness, I hadn’t requested a Macmillan nurse. This puzzles me now since we had had one when my mother was living with cancer – over seven years, many of them with us. I know she had found her nurse, Sue, a great comfort and support so why hadn’t I asked for another ‘Sue?’ Perhaps I had mistakenly tried to be everything for Sara – perhaps too, I had denied the notion that she might die: it was too awful to contemplate. Whatever the reason, I regret it now. I remember meeting a mother in the hospital whose son (he was 18) had been receiving treatment for osteo-sarcoma. “How old is your daughter?” she asked. When I told her, she replied “The outcome for David isn’t too promising; he’s doing well now, but ….... At least you’ve had your daughter for 25 years”. I don’t know if David survived his cancer or not. Perhaps we should have stayed in touch. I would not have welcomed a parents’ support group whilst Sara was ill, but I think it did help to meet another mother in a similar position. I didn’t feel so isolated, so unusual, so alone. It was happening in other families too. Maybe there should be organisations offering to put parents in touch with each other locally, details being displayed in hospitals, oncology clinics? I ‘phoned the Lymphoma Helpline once. The nurse was sympathetic but clearly not able to give me hope. One morning when I felt impossibly low, I contacted my local Samaritans branch. “My dear, I just want to give you a hug” the volunteer said. I’ve always remembered her words.

And now? I have a new life, a different one certainly from the one I envisaged in October 1994. The Millennium was hard, cruelly so. Sara should have been with us. I would have liked her to meet Simon who has given me back my belief that there can be hope. I trust him implicitly. Perhaps its change in the end which helps most, even change that seems small: that, and time, and courage.

Carol
17.01.00