Early July, and high summer has come at last. The sun is shining and swifts are wheeling and shrilling overhead. My story begins, however on a dismal mid-November morning. Another light bulb had gone in the dark upstairs corridor of our Victorian house, and I was standing on a chair wrestling overhead with the light fixture when John emerged from the bathroom, one side of his face twitching. ‘I can’t stop doing this’, he said. My immediate reaction was of slight irritation – can’t you see I’m busy, what is this, some kind of a joke? This was followed immediately by fear. Could it be a stroke? I raced him round by car to the local cottage hospital. The attack was over before we got there. However, the duty nurses took immediate care, at first themselves, and then booking us into our GP’s surgery for more checks. Nothing had yet been determined when a week later, on Sunday evening, John had another ‘fit’, as I’ve learned to call them, while I was at Evensong. As he was due a flu jab next day, we decided to wait and ask then. Four days later there was another, at 8pm. We reached the cottage hospital before it closed, and this time the duty nurse rang and fixed a visit to Medway Maritime Hospital, 10 miles away. We waited for tests, surrounded by people spurred by anxiety, on behalf of themselves, friends or relatives – all of us companions in stress.
We were at Medway for the rest of the night while John underwent various scans. Eventually they said, ‘We’ve found John a bed in the Macmillan Cancer Wards – not that we know it’s cancer’, they added hastily, ‘but there’s a spare bed there’ – for Medway is an enormous and grossly pressurised hospital. The Macmillan Ward was a blessing – spacious and quiet. When I left it was about 4am, and the frost was thick as snow. Distressed and disorientated, I exited the car park wrongly, and circled vainly for a while, before retreating and trying again. I reached home at 4.30am, made myself some coffee, and settled down to write the first of what became a series of emailed Bulletins. John had been due to go to Manchester for a performance of his Horn Quintet. There were musicians and organisers to warn, and others to contact for later commitments. Still not very computer-literate, it was the first big mail-out I had done. I finished around 6.30am, then snatched an hour or so’s sleep.
John stayed in Medway from 29th November to 4th December. The consultant was sombre. ‘There’s something there – it could be a blood clot. We are sending the scans to King’s College Hospital, in Denmark Hill.’ Appointments were made for John to see the Neuro-Oncology team at KCH on December 10th and 14th. A tumour was confirmed, and a decision was made to undertake a cranial operation on December 28th. Christmas was spent in preparation, including the delights for John of standing in a chilly bathroom for several minutes each morning covered head-to-foot in anti-biotic gel.
The operation took place in the morning. I was allowed to visit that afternoon, and was amazed to see John cheerful and talkative, his discharge due the next day. Our travel to and from KCH had so far been by train, but for the discharge journey I arranged that my nephew Gary would pick us up. It was a filthy day, and by the time John was discharged, about 4.30pm, pitch-black, with a howling gale and torrential rain. There being no car pull-in, I waited on the kerbside to flag Gary down, my umbrella blowing inside out, while John, who had slept badly in the noisy ward, waited inside. When we got home, among the post waiting was a music magazine. I opened it quickly, hoping for good cheer. In it was an unpleasant review of a short work of John’s. I tried to hide it, but John saw it and read it without comment. Then he turned slowly and made his way upstairs to bed. He had 13 staples in his strapped, swollen and misshapen head, which also bore red bruises and the black clamp markings for the surgery. His hands also were black and swollen. He could have been a model for the crucified Christ. It was later confirmed that his brain tumour was of the worst kind, a glioblastoma multiforme, inoperable and apparently incurable, with no known cause.
At this time, John was under contract to the BBC to write a short orchestral work to open the Prom concert on July 25th. John’s idea stemmed from a visit to Japan in 2002, when he’d been astounded and amused by the jangle of sound emanating from an entertainments mall full of slot-machines, in Osaka. After listening for some time, a musical idea had emerged in his head, and had been there ever since. so we were delighted when Roger Wright liked the suggestion. The work was tentatively entitled Joybox, and was perhaps the oddest commission to undertake in these circumstances.
Since his spell in Medway, John had been taking steroids, which are apparently well-known for disrupting sleep patterns. It was thus, recovering from cranial surgery, and often sleepless, that he worked on Joybox. Meanwhile he was put under the care of a consultant clinical oncologist at Kent Oncology Centre, Maidstone. She revealed that she’d been tempted to prescribe palliative care only, considering his age, and the aggressive nature of the tumour. However, she’d been astonished that his brain scans indicated the brain of a much younger man, so instead she’d recommended six weeks of continuous radiotherapy and chemotherapy. This began, after a respite period, on 29th January, and involved daily travel to Maidstone for radiotherapy, during a long, grim, snowy winter. Chemotherapy was in capsule form, and the whole regime involved 14-16 tablets per day, including chemo, steroids, anti-sickness and others. The timetable was complex, and each day began at 6am with me laying out tablets, some to be taken with water, some without, some with food, some before food, some an hour before others. John somewhat grudgingly rose at 6.30am to start this regime, but later, as his sleeping patterns became more disturbed, he very often rose at 4 or 5am, and worked at Joybox ‘by hand’ rather than computer, in front of a gas fire.
He was working in his usual fashion, not from A through to Z, but as a mosaic of ideas, gradually joined together. It was thus that much of Joybox was sketched, resulting in a gas bill of horrific proportions. Despite the hardship of this routine, however, John was stoically patient and uncomplaining. In fact he sailed through his therapies on the whole, with only a horrendous, tormenting rash, during the last two weeks. When the therapies finished, another respite period was planned, and then three more short blasts of chemotherapy, at monthly intervals. John still seemed quite strong, and we went to London on March 16th for the premiere of his Psalm-Cantata, with the English Baroque Choir under Jeremy Jackman, which went brilliantly, and John was delighted to meet various friends and fellow-composers there. We attended two other London concerts that week, including one with Piano4Hands.
However, quite suddenly John went totally downhill, from March 27th, becoming exhausted physically and mentally sluggish. His steroids had been cut down, and he was finally taken off them on April 2nd, and had we not been due to see the oncology doctor on April 12th, I would have sought advice for his condition. By the time of his appointment, however he had improved somewhat, and the doctor assured us that such dramatic after-effects were quite normal. She was indeed very pleased with the way he had tolerated therapy. Nevertheless, during this period John had not been able to work, and time was under pressure. But by mid-April he felt well enough to continue, probably too vigorously for his state of health. On April 23rd he devoted two and three-quarter hours to concentrated scoring work on the computer – an hour in the morning and the rest in the afternoon, leading me nervously to press him not to overdo things.
The next morning he seemed fine, but as I set myself to do some emails two things happened – my computer threw a mad fit before my goggling eyes, and I ran upstairs to implore John’s assistance. I found him collapsed and disorientatedly flailing in the bath. He’d had a major seizure, and I had to get him out, dried, walked to the bedroom (where he collapsed on the bed, unable to sit upright) and dressed, before attempting to call for medical help. It was an agonizing episode, too long to go into here, and perhaps the first faltering of the exemplary medical care so far. The oncology doctor was under pressure of appointments, her oncological nurse on holiday, her secretary on voicemail. The Palliative Care team had not yet been involved. Eventually I did get through to the secretary, having meanwhile tried other helplines – which were no help - and she said to take John to our GP’s surgery. ‘Tell them he has got to be seen immediately.’ There, his vital signs were checked out, and seemed all right. Eventually I did get him to Maidstone. I was unable to see the oncologist, but a message was relayed. His fit did not seem anything too far from the normal. With this I had to be content.
This was the worst of all times, and I felt very much alone. John continued to be slow and semi-comatose, with no appetite. It seemed he would never walk or be himself again. Had he fitted again I would have demanded medical help, but he just continued zombie-like. I read and re-read the Macmillan booklets – ‘You may feel very tired ...’ – was this what they meant by very tired? Who was I to make far-reaching medical assessments? This continued for two weeks, and the deadline for Joybox to be handed in drew nearer. I laid plans with Howard Friend, Managing Editor for ChesterNovellos, what to do if he could not finish the piece. Two composer friends kindly offered to help. During this period a local friend died of leukaemia, and we also heard the shocking news of Steve Martland’s sudden death.
However, by the time of John’s next appointment with the oncology doctor, May 10th, he was beginning to recover. She was greatly taken aback at how bad he had been, and brought in the Palliative Care team, at the Wisdom Hospice in Rochester, and they were of great assistance. Meanwhile, John had managed not only to check through the work he had already completed, but without letting on to me, had gone on to finish the score, working in short bursts, and his courage and will-power in this respect astonish me. We will never know what happened on April 24th. John doesn’t remember. I call it a brain-storm. His palliative care doctor described it as a flat battery.
Currently we still don’t know what the future holds. John’s health is variable. The monster (as I think of it) is still causing trouble, but is so far held in check by medication. It is situated above his right ear, with its faulty ear-drum, in the parietal lobe, which commands speech and writing, among other things. John was always a rapid typist, with the dexterity of a pianist, but he is now somewhat dyslexic, and can be tired by long conversations.
The question arises, if writing words is difficult, how can he still have written music? Partly this can be explained that the concept of Joybox – though not the notes – had been contained in his brain for 10 years; partly, that after writing music professionally for half a century, and even as a child, music is ‘hard-wired’ into his brain. He still has music in his head to write, given the opportunity – a trumpet sonata, two more string quartets. He has ideas for two more symphonies, though that may be too much to undertake. It may seem to have been a strange trajectory for his compositional career, from the youthful romantic gloom of his first undoubted major work, the First Symphony – Elegy, to the light-hearted entertainment of Joybox. But then Joybox was never intended as a Final Statement, and perhaps the preceding Psalm-Cantata, with its last chorus (‘Behold, how good and joyful a thing it is: brethren, to dwell together in unity’) holds a bigger clue to his deeper thoughts.
Throughout this whole episode, John and I have been greatly supported by the kindness and sympathy of friends and colleagues, not least the Editor of this magazine, and we thank them all.
(First published in the September/October 2013 issue of Musical Opinion)