I am standing at the side of a children’s play area; beside me the wide brown waters of the Mersey heave out towards the open sea; on the skyline are the silhouettes of the Liver Birds high above the city. I watch a tall, laughing father as he spins a shrieking little girl with wild curly hair on a roundabout. Often his eyes flick towards a blond boy acting out heroic fantasies on the climbing frame, or he checks on the pair at the infant swings, the slender oldest child pushing an excited little fellow. Sometimes he glances my way and grins, because this is my son, Greg. You would have to look closely to notice the asymmetrical shoulders.
Who would have predicted this, that terrible April of 1989? Nearly a quarter of a century ago, aged 12, Greg was diagnosed with an osteogenic sarcoma (a bone tumour) in the left humerus, followed by three separate secondary tumours in the lungs. He underwent savage chemotherapy regimes, still at the trial stage, radiotherapy, an operation to replace the damaged bone with a titanium replica, three minor follow-ups to “make it grow”, and two thoracotomies and one sternotomy to remove the subsequent metastases; thus defying all statistics against survival, and chronicled by me over those five years in a series of articles for the Independent. He has had infinite experience of needles, tubes, stitches, drip blockages. Yet now, aged 36, he is happily married with four children. I am awed by his vitality, by his strength, his intelligence, his authority.
“You must write about him once more,” friends tell me, “because it’s an uplifting story.” A fortunate one, too, perhaps. A few years after the final operation, I sent his thoracic surgeon a couple of photographs of Greg looking strong and tanned and his reply was chilling: “Thank you for these; they will be helpful to show at conferences when I am arguing for funding.” Did they have to fight for money at the time, but never told us? I suspect they did. Yet total strangers were so generous: a cheque in the post in response to an article, a free boat trip round Flamborough Head, a sponsored visit to Florida, a joyful weekend at Center Parcs – this last given by a charity set up for terminally ill children, which made me feel somewhat guilty when I found out: according to me, we didn’t have a terminally ill child.
We knew so little at the start. The evening before we were due to see the paediatrician to discuss the initial X-rays, which I had mentioned at work, a colleague phoned me: “All sorts of things can cause sizable lumps you know, Mary. It could be muscular, or a damaged tendon...” Suddenly I was out of my depth. What does he think I think it is? I had never heard of bone cancer, and thought children could get only leukaemia. Deaths of other young people demarcate the years since then like milestones, a horrific roll-call that reminds us of the fragility of life; some in accidents, but some were victims of cancer, which makes me feel apologetic, as though somehow we have cheated. Why have we been so lucky? Was it because we laughed so often? Once, I had to sign a consent form for amputation of the arm, should the tumour prove impossible to contain: “Well at least it’s not in my head,” said Greg.
His refusal to be an invalid, and his friends’ belief in this, their reluctance to offer any quarter in the many games of Risk and Diplomacy played out passionately over days and weeks, their casual passing of the vomit bucket after the worst sessions of chemotherapy, such times must have confirmed him in his belief he would survive. School was not easy with no hair and haphazardly rare attendance, but teachers also refused the sentimental approach. During one brief period back in class, his head of year noticed the forbidden trainers on his feet (he had not been well enough to go shopping for new uniform lace-ups). After a pointed glance, he said: “For medicinal purposes, I presume,” and passed on.
For many years we lived the tick-box approach to the significant developments in growing up: “Well at least he has got drunk, found a girlfriend, passed his A-levels, tried drugs (it’s surprising how fast morals slip under such circumstances!), travelled, been through Hull University. Leaving him at university once, shortly after the funeral of a boy from school who had had non-Hodgkin lymphoma, despair and foreboding seemed to wash over the earth. I pulled into a lay-by and looked back; as I did so the setting sun lit the sky over the Humber Bridge with a wild red flame, surely a symbol of power and life. Inevitably Greg flamed fairly wild himself, and there came a time when I pointed out that he might be embarking on a long life rather than meeting an imminent death. Very sick children become inevitably spoilt and have little experience of responsibility. Gradually he got a job, committed to his girlfriend, began his family.
With the muscles disconnected from the shoulder during the operation, leaving the arm controllable only from the elbow down, life is not straightforward. The tumour ran down the humerus so far that it was unclear before the arm was opened in the operation whether it would be possible to save the elbow; it was, but it was close, and if it breaks, as it surely must one day, the elbow will also have to be replaced as part of the prosthesis. At some point, he has dropped each one of the children as a baby, and can’t throw them around like other fathers do. I think he is in some pain most of the time, but as I watch his fingers crawl into position on his pool table I remember an old gentleman watching us play together in a games room 22 years ago. “Excuse me for intruding,” he said, “and it is too late to change your game, madam, but this lad has his whole life before him and needs to learn how to hold the cue.” On such incidental comments are resistance built, and how right he was.
It was a time of horror, but I never saw it then, only in retrospect, when, briefly, I had nightmares. His sister Jo and I recognise the carapace we have grown around ourselves, gossamer thin, so that a feather scratch can constrict the throat and break the voice. The role of powerless sibling is not easy to play, either. Greg has faced his experiences, and shown his children the photograph album I kept and eventually gave him: the picture of that boiling corruption of cells in the extracted humerus is there, bloody, laid out on a green cloth; and the shining metal replacement, from the ball of the shoulder joint reaching nearly to the elbow; there is the chemotherapy drip; but there is no photograph of a child, fragile, bald, laid out on a table in a white gown, a tear hugely magnified welling under his glasses as he turns to me and whispers, “Mum…” just before the anaesthetic takes him: that one is stored only in side my head.
So, as I watch them in the playground, I am filled with the relief and the beauty of it. Gratitude to the NHS surges again: in the three great hospitals he frequented, Addenbrooke’s and Papworth in Cambridge, Woodlands (The Royal Orthopaedic Hospital) in Birmingham, he met brilliance and compassion; sitting hour after hour beside his bed, I too was treated always with respect and understanding. From the shadow of death, those professionals who worked with him have enabled him to hand on this gift of life, he and his beautiful wife Layla, to that first magical baby girl, and then to the three following. How vital they are, how intelligent, energetic, sensitive; what fun they are. The expertise and the huge financial costs of treating the one patient do not end with the saving of a single life: Greg is the father of a growing family, will one day perhaps be a grandfather in an expanding dynasty. Who knows what the unborn may one day contribute?
Greg is a Chinese Dragon, the unquenchable fire; he swirls his survival as a flag of triumph on the battlefield, and prays there will be more survivors like him, destined one day to watch their own children romping in the playgrounds.
A mother’s story
This is an extract from Mary Taylor’s article in The Independent in December 1989
We have come to the pool after a game of squash. My son arrives in his swimming trunks.
‘Greg!’ I exclaim, ‘whatever have you done to your arm?’
‘I told you it had been aching a bit.’
‘Yes, but you’ve got a great big lump at the top of it.’
He peers down over his shoulder. ‘Oh yes. So I have.’
It is Tuesday and we are in our local hospital. On the Sunday the casualty department arranged an X-ray; on Monday X-ray passed us to orthopaedics. We are now expecting to be admitted for a small biopsy of the bone, to see what is causing the lump.
A secretary appears: ‘Mrs Taylor, could you just come and have a word with the doctor, please? Your son will be all right here for a minute?’
We exchange glances. I leave him. And he is there when I return. He has a bone tumour. He is 12. Now it is his turn to listen to the explanation the paediatrician has just given me; to have the tumour which has eaten into about 9cm of his humerus shown to him on the X-ray. The statistic of ‘perhaps 50 per cent permanent cure’ is omitted; otherwise the detail is explained with precision and sympathy. He is given time to assimilate, to question. He cries once, briefly. I can see the terms ‘malignant’ and ‘tumour’ have not yet added up to ‘cancer’ in his mind, but soon will.
The next few days are a round of scans and tests before he starts his chemotherapy. His white blood cells are hit hard by the drugs, causing tantalising delays (but also reprieves). I have always felt I would go to any lengths to prevent anyone or anything harming any one of my children.
Now I watch people giving Greg pain, fear, drugs; there is nothing I can do.