FIFTEEN YEARS ON….. ‘A MEMORY BREAK’
FIFTEEN YEARS ON….. ‘A MEMORY BREAK’
“Hello Sue! It’s Mollie here!” I recognised those chirpy tones immediately, even though I hadn’t spoken to Mollie for some months. She asked if I had remembered that it is now fifteen years since I was first involved in the setting up of the original Sue Young Cancer Support group and could I write a few words for the newsletter about those early times, yes, of course I could.
Later on that night, during bath time with my youngest son, I was already beginning to dredge through the dusty archives of my cluttered mind for significant dates, times, events – highs and lows (I remember mostly the latter!) in the first few months and years of the group. Memories of those embryonic beginnings in some rather cold, shabby, borrowed rooms on Friar Lane… to the later move to the Mission for the Deaf (at least it wasn’t cold there!) But these memories made me realise that it isn’t these poignant places, times and dates that matter most in the group’s history, but how it actually felt at the time for those of us, drawn for whatever reason, into helping to establish the group, and why we are there. These people, whose lives at the time, were to fill my waking (and sometimes sleeping) hours, had come together with, often, very little in common – totally different individuals from different backgrounds, with different experiences, needs and aspirations – but somehow we were tenuously bound by one single emotive and often chilling word, ‘CANCER’ which had in some way either superficially, or traumatically and deeply, touched and changed our lives forever.
A clinical description of this time in the life of Sue Young Cancer Support won’t suffice, because it isn’t what the group was or is about. Words simply cannot define, distil or in any way capture the spirit and feelings of these people who came together in the Autumn of 1981.
The story isn’t about buildings, meetings, red tape and organisational achievements – vital though all these might be to the effective functioning of any such group. Rather, it is about real people with real feelings and needs to be met; their smiles and tears, joys and sorrows; brining all this and more to the group – reaching out to touch others in need.
So I have put to one side my first clinical effort to summarise these times and started again. Aware that you, the reader, may be peripherally involved with Sue Young Cancer Support, or more deeply committed, as Wendy wrote recently, that for her, Sue Young Cancer Support is more a way of life than just a job. Whatever your involvement is with ‘SYCS 1996’, I hope that my words (however inadequate) might in some small way, capture in your mind’s eye, some of the very powerful essence of our spirit fifteen years ago, when the seed was sown, so that you might know how close these feelings were to your own today, ‘The group and its activities change, but the reason for being there doesn’t and the care and support will surely not.’ (Audrey.)
Instead of sifting through my dusty archives for relevant information, I lit my favourite perfumed candle, which my elder son had brought back from a school trip to Paris years ago. Immediately, the delicate smell of rose and lavender released an overwhelming flood of emotions in me and evoked so many comforting, childhood memories of being mothered and loved. I found myself in one of these ‘memory breaks’ (so favoured by Mollie as a wonderful prescription for healing body and soul) and, thoughts of Mum brought me in closer touch with the me of more than seventeen years ago.
I was twenty seven at the time and totally, selfishly absorbed in myself and my own family life with two small children. Mum, although living miles away from Leicester, was equally absorbed in our lives, just as Mums and Grandmas always are. I had survived years of University life without succumbing to the depravities of a hippie commune (my parent’s greatest fear of me, during these ‘Make Love Not War’ years of the 1960’s!); marriage; learned how to cook a decent meal from humble (hopeless) initial beginnings with a (hard) boiled egg; childbirth (twice, even!); and several years teaching. Yes, I had it all (or at least, I rather arrogantly felt that I did.) I was happy and in control of my life and where it was going.
Then, on one hot sunny July day in 1979 something happened to change all that. Dad telephoned in a terrible state, to say that Mum was very ill and could I come immediately. As I hurriedly packed my bags I remember feeling bemused rather than worried. We had all been at their home in Southport for her 51th birthday only weeks beforehand and, although she looked tired and was hobbling a little (arthritis, she said) she was, to me, my usual smiling, happy, pretty, plump, loveable and loving Mum, just as she has always been.
The train journey North was long, hot, tiring and tedious, and I remember sitting, in my scruffy jeans on the ground of the deserted platform of Wigan station (the sort of place where vandals had long since removed the seats) desperately wondering if my children, left behind in Leicester, would cope for a few days without me. What on earth could be wrong with Mum? She had never been ill and always been there for us, all of us, whenever we needed her. But not now.
Ten weeks later she was dead. After my arrival it took six doctors to visit the house before one would actually listen to my semi-hysterical pleas for help. The detached, menopausal diagnosis of five of them, just didn’t add up. Mum however, although herself almost consumed by fear of what was wrong with her, knew that she was dying and wanted desperately to talk about it, to help herself, but especially to help us through it all, in her typically, caring, selfless way. As I couldn’t cope and couldn’t accept it I flatly denied it, choosing instead to accept the ‘safe’ menopausal explanation of her illness. Healthy Mums, especially mu Mum, didn’t die at 50 after all. I refused point blank to discuss funeral hymns with her, instead choosing to ignore her pleas to talk and just hold her close. Instead, I followed doctor’s instructions to ‘help her snap out of it’ by half-carrying her into the bright sunshine of the garden and trying to force feed her. Even today, the memory of this is almost too painful to bare.
Meanwhile Dad, who had always adored Mum and depended on her totally in almost every way, locked himself in the garden shed and cried. Finally, after several days of this nightmare, a young consultant came and confirmed what was now becoming obvious to anyone willing to accept it, Mum had advanced ovarian cancer, with multiple secondary’s and she was going to die. There was ‘nothing anyone could do.’
The last nine weeks of her life in a local hospital was a watershed in mine. I had to ‘grow-up’ practically overnight. It was only then that I realised that my previous experience of life, although meaningful, was both shallow and naïve. I had no idea how to face and cope with the fact someone I loved very deeply had cancer and wasn’t going to get better. She was going to die, very soon, and I simply couldn’t cope with her feelings and fears, my Father’s, or my own. I was absolutely desperate to have someone to talk to, to share my pain, hold my hand, dry my tears and just simply be there for me, to give me time and to listen. Someone to offer me some love and support so that I could find the strength to give my love and support to Mum, when she most needed it. I felt totally alone and very afraid and there was no one there for me. Physically, I was by Mum’s side nearly all the time, towards the end even sleeping in the hospital (the medical insensitivity to me at this time even stretched to giving me a bed in a room next to the mortuary) but I was emotionally empty and desperate for a friend. These were the longest, darkest hours of my life.
You could say, ‘what could anyone have done?’ or as her consultant so glibly put it when I asked him for more details about Mum’s illness, ‘I have told you that she is terminally ill. That should be enough.’ But it wasn’t enough and it could have been different. She was on an ordinary ward, in an ordinary provincial hospital, with other patients who were not dying. Some had minor ailments and none of them could cope with Mum’s physical and emotional distress. Neither, it seemed, could the medical staff either, some of whom seemed afraid or treated her as if she was some sort of failure. Even her consultant ignored her presumably not wanting to waste his limited time or NHS resources on a patient for whom there was ‘no hope’. Every day he walked past her bed, tuning his head the other way, rather than acknowledge her. (These days I think they call it ‘cost effectiveness’…) In an attempt to relieve some of her pain and thus calm and quieten her, Mum was given regular doses of some evil and lethal mixture of morphine, alcohol and hallucinatory drugs. Known as Brompton’s cocktail, it was administered in a seemingly haphazard fashion in response to Mum’s anguished cries for help (when they heard them.) Meanwhile, crying, or any outward display of emotion, was virtually forbidden around her bed. Dad, who was on the verge of complete breakdown, was ‘removed’ from the ward if he was upset, because ‘it might upset Mum or the other patients.’ As a result, he didn’t see Mum for ten days before she died. Relatives couldn’t cope either, with seeing Mum’s overnight decline, and they didn’t come. My husband had returned to Leicester to work and I had the two children (both under three years old) with me. They were distraught at having to be cared for by someone strange, in the Southport area, whilst I stayed in hospital. Jamie, the eldest, couldn’t understand where his Grandma had gone and why he couldn’t see her any more.
Towards the end, I’m ashamed to admit that I could only face returning to Mum’s bedside each time, after several stiff drinks. I kept a bottle of whiskey for this purpose next to my bed in my ‘room next to the morgue.’ Without any support I dare not allow myself to face any of my feelings at the time for fear that I couldn’t cope with them and would drown in them. So, I tried to blot them all out. I needed someone to give me their time just to let me ‘be’; to accept; to cry; to be angry; to be still. I needed gentle advice to keep talking to Mum even through her comatosed, drugged state did not allow her any longer to talk meaningfully to me; to tell her that I loved her and always would, and to thank her for all her unconditional loving of me, for all these years.
Things I now bitterly regret that I never did. The truth of it was, that I hadn’t ever before fallen down such a black, seemingly endless pit and I needed someone to walk beside me and just hold my hand. And then on September 28th, 1979 she died.
After it was all over, as a symbolic gesture perhaps, I cut my waist long hair short and started to learn how to cope with all the emotions that follow any bereavement for anyone that you love. I didn’t know what to expect. Why did I feel so angry, alone, empty, frightened and even guilty? People around me smiled in a kindly sort of way but they didn’t really understand and they expected me to return to normal after a couple of weeks. ‘You’ve got too, you know, for the sake of your Father and the children. They need you.’
It wasn’t until over a year later that I realised that I may not have been able to prevent Mum’s painful and premature death, but so many things about it could have been changed and been different. She should have been allowed to die in peace, with her family and those she loved around her, and above all else with dignity and respect. Mum could (and should) have been helped and supported along that last, long journey in her life and so many of her needs (and our needs) at this time, physical, emotional, spiritual, social and psychological, could have been taken seriously and responded to. As yet, we may not be able to prevent and cure many forms of cancer, but surely we all have the right to be told that we have a life-threatening disease in a sensitive and caring a manner as possible; a right to share in decision making about any treatment; a right to receive any support and information to help us understand and come to terms with our illness and for our families and friends to have access to this too.
Fifteen years ago, although I was not aware of it at the time, other people whose lives had also been affected by cancer in some way or other, were feeling similarly to myself. A small group of like-minded people calling itself ‘Sue Young Cancer Support’ was created in Nottingham to try and meet some of these needs. A ‘phone-in’ to their local radio station was inundated with peopled needing help and support and some volunteers offering to give it, including many in the Leicester area. The seed was sown.
The early months and years in SYCS were very hard for us all. We were a tiny group, with many different individual experiences of life; differing aspirations for the group and for our own roles and needs within it; and above all else, vastly differing (often totally conflicting!) ideas about how to meet all these goals. We were being constantly inundated with patients and their families, and bereaved relatives – all needing help; some very urgently. We had virtually no money (an initial grant of £50 did not seem to go very far); very few ‘suitable’ volunteers (all, at this stage ‘untrained’) ad many conflicting charitable interests, such as LOROS, being established in Leicester at the same time. In addition the ‘seed’ had been sown into very inhospitable, stony and infertile ground – the medical profession! At the best, our raw, rather naïve enthusiasm, was greeted in hospitals and doctors surgeries with a rather bemused, detached neutrality. Sometimes (I remember well!) this bordered on downright antagonism!
Over the years the seed had grown and flourished into the Sue Young Cancer Support group of today. Its entire life history and the years which followed is another story, for another time, to be written by other people who have, I know, over the years, consistently given themselves to keep the group going. Especially those who have taken a back seat during its times of glory, success and achievement, but were always there at the helm (dressed albeit in protective armour!) when things went wrong for the group, and when inevitable stresses and strains took their toll. (Jo wrote recently that she ‘was painfully aware of the personal cost of being involved in a group like ours’.) Privilege is a very overworked term these days, but personally I do feel very privileged to have been involved in these early days of SYCS. For me, it is the only nurturing light that warms the still cold, dark empty void inside me for my Mum. Or, in the words of the children’s hymn, ‘like a little candle burning in the night.’ Especially, I value deeply, as I expect we all do, the friends I have made through the group and the lessons about life that it has taught me. We may not be able to dramatically change the way in which cancer (or any other life-threatening illness) is handled in hospitals (although, thankfully I gather that some improvements have been made) but by our behaviour towards each other we can show that we care. I have never felt that the group was about sadness, pain, fear, drying or loss (though all these elements inevitably play their part and take their toll) but at a deep, sometimes incomprehensible level it is about loving, sharing, and friendship. Healing is not simply about making our bodies physically well again – sometimes we cannot do that, no matter how hard we try or wish or pray that it might happen. But true healing of spirit can come about in other ways when you feel and experience the love and care and friendship of others around you and you know that you are not alone. A real friend is always there when the rest of the world walks out.