When I Die

by Philip Gould

  And there were moments of farce too. Gradually my production of urine started to decline. Every hour it got worse. The doctors thought at first it was because I was not drinking enough. Gradually they worked their way to the truth, which I had long since suspected, that my catheter had stopped working and they would need to replace it. This was a frightening prospect; I was certain that it would be painful.

  The curtains were closed around me and a small medical crowd appeared. I felt my misfortune was a spectator sport. The surgeon was in control and took the old catheter out, which was not painful at all.

  I felt it was going my way, but then he produced a large white sheet about a metre across with a hole about an inch wide in its centre, which was placed over me. I don’t think I have ever felt quite so exposed. The sister produced a calliper-like instrument and measured me. And then in a completely surreal moment she said: ‘I think we need a small bore tube; it’s not very big, is it?’

  She was referring, I hope, to the size of the aperture and nothing else, but it was still embarrassing. The crowd was asked to leave and it was me and the surgeon. He injected a local anaesthetic, which amazingly did not hurt, and inserted the new catheter, causing me almost no pain at all. Not for the first time, my fear had been misplaced.

  For most of the time I lay there in a kind of limbo, not able to talk much, but able to hear everything. It became clear to me that nurses – and doctors – assume that a patient’s consciousness disappears if their eyes are shut; with your eyes closed, you would be talked about as if you were not there. This was understandable but disquieting. It was also interesting: I would lie there, not asleep yet not really awake, constantly and unavoidably listening. The first morning a doctor reviewed my surgery to his team, going through detail after grisly detail, totally oblivious to the fact that I could hear every word. I had moved in the blink of an eye from being a subject to an object.

  Time after time, comments made to my face were flatly contradicted by remarks made just seconds later when I appeared to be asleep. One moment a nurse told me I could have as much pain relief as I wanted, but the second my eyes were shut he turned to his companion and said, ‘He’s obviously neurotic about pain, and the more pain relief he gets the more he’ll want.’

  Completely true, of course. Pain was an issue for me, certainly. I felt low-level pain almost continuously and acute pain quite often, and I hated it. I learnt the disabling power of pain, how hard it is to cope with, how undermining it can be. The Geordies were stoic, they toughed it out and got through it. In contrast, I felt like a hopeless southern wimp.

  The worst moments – in Newcastle, as in New York – were when they changed my position in bed. This always caused pain to shoot through my body like a small electric shock. With pain, as with almost everything else in cancer, the fear is worse than the reality, and every time you are able to defeat it your body and spirit become stronger. I still hate pain but I can now tolerate it in ways unimaginable three years ago. But I do now feel a greatly heightened empathy with anyone suffering serious pain. Cancer does change you like that.

  The nurses in the unit were strong, opinionated and forceful. They would chatter constantly, often focusing on financial pressures, complaining about such matters as Wayne Rooney and his salary, which was an issue at the time. It seemed clear to me that excessive differentials in pay were straining the public-service spirit. It is hard not to feel sympathy. These nurses were working twelve-hour shifts with critically ill patients, on the very cusp of life and death, and yet they were paid £33,000 or so a year, not £180,000 a week.

  The days may have been interesting but the nights were challenging. There was no protection at all, no comfort zone of sleeping pills or tranquillisers, no alcohol, no talking to friends or partners.

  At night you are completely exposed, there is no hiding place. I had three drains, a feeding tube, a tube up my nose, an oxygen mask around my face, and much more besides. My whole body was aching and I could barely move. As night arrived I was placed semi-upright, and just sat there, trapped in the same fixed position. Hour after hour passed as I lay there, dozing at best for an hour or so, until at last dawn arrived, bringing with it the 5.30 round of tests.

  The first night was the worst – I do not think I slept even for a moment, my heart beating rapidly and panic always just below the surface. I was fearful that I would not have the courage or capacity to get through.

  That night and the one that followed were also made harder by the constant hallucinations. Even without morphine, my mind became difficult to control. Shutting my eyes would produce strange and inexplicable patterns floating inside my head. These moved in a constant swirling flux, making me feel more secure with my eyes open than shut. At first these patterns were black, then gradually they changed to white and then to colour, but still they were disturbing, nothing was ever solid.

  After my epidural failed and I began taking morphine it got worse. I became trapped in living nightmares, unable to speak, move or raise an alarm. My bed seemed never to stay in the same place but would move around, creating new perspectives, new angles, new dimensions.

  Throughout my life I have always trusted my mind never to let me down, but here I lost control of it, overwhelmed by the drugs and the tiredness. After a while I refused to take morphine, preferring physical pain to mental distress.

  After two days in intensive care I returned to Ward 36, and was given a bed in the critical care unit. It was like coming home. The nurses all knew me by name and it felt so safe. I was soon institutionalised, settling into a standard routine.

  I was woken by a nurse at half-past five or so and given tests, and then moved to a chair. For the first few days I was washed, and then sat there bereft of energy until Louise and the other physiotherapists arrived.

  Before long I could walk the corridors of the hospital just as I had done in New York. But here, unlike New York, people smiled and the mood was jocular, the patients bracing themselves to be cheerful through the pain. It was very British.

  After the walk I would sit on my bed reading about a page an hour and wait for a visitor, invariably Gail in those early days. At first we laughed a lot, and it really did feel good to be alive, but after a while I was a less attractive patient. Gail was a saint for putting up with me.

  In the evenings I read and watched television, staying up late, delaying the night for as long as I possibly could. The days were slow but they were passing. Alastair Campbell came up, bringing with him Brendan Foster, the athlete and BBC commentator. Brendan exemplifies the North-East: big-hearted, generous in spirit, protective and proud of his region.

  One of the purposes of the visit was for Alastair to meet Mike Griffin, always a risk given Mike’s wariness not just of New Labour but also of spin. In the end it worked. Initially, they eyed each other with a kind of territorial suspicion, but soon they became involved in a two-person Question of Sport, trading increasingly inconsequential and obscure facts about irrelevant sporting events. After about half an hour honour was satisfied and they became friends. Grace and Brendan looked on, bemused.

  All the staff were outstanding. Mike would visit at least twice a day, at seven in the morning and then later at perhaps seven in the evening, his presence calming everyone. He had a wonderful touch with patients, treating each equally and with genuine respect, and he would always be there at weekends.

  His patients gained, but I am sure his family suffered. Mike was not the kind of person who understood the term work–life balance. He was driven: to save lives, to make his unit the best in the world, to do everything he possibly could for his patients. He could be stubborn and was not easily open to compromise. But that was at the core of his strength.

  If you started an argument with Mike it would take a very long time to finish, and you never quite felt that you had won. We spent hours in the evenings discussing politics and life.

  The nurses were exemplary, never once failing to be positive or professional. At firs
t they were a blur of uniforms and Geordie accents but gradually they emerged as individuals, with strong and sometimes angular personalities. They may initially have been suspicious of me, but gradually relationships formed – during a twelve-hour shift you get to know somebody and they get to know you. They would always start their shift full of energy and always leave tired. You could see the strain and the responsibility taking hold as the time went on. Twelve hours on your feet is a long time.

  They were impeccable; it is impossible to imagine receiving better care. This was a team, a unit, in every sense of the word, working together almost intuitively, led ultimately by Mike but with everyone willing to step up and take responsibility when it mattered. It was impressive.

  After a while Georgia replaced Gail. Georgia loved Newcastle, the hospital and Mike, seeing them as the embodiment of her values, something to believe in. It was completely her kind of place.

  The week ground on with nothing getting much better; although not impossible, it was a slog. Like everybody else I was getting through. But the surgery and its aftermath had brought me closer to pain and death. I felt that when the crucial moment had come my faith could not get me through. I felt deserted by it, and that I had deserted it in turn. A priest came by, sent by my local church, ironically at a time when I was suffering pretty intense discomfort. We talked about pain, faith and doubt and I could see my faith settling into a new place, more sceptical and doubting, more aligned to my personality.

  After ten days I moved into a room on my own, and then I collapsed with tiredness. Alistair Gascoigne, the man in charge of both the intensive care and the infectious diseases units, happened to spot me in the corridor and thought at once I was not well.

  Alistair is another of those NHS giants. Brutally funny, he was brilliant at getting seriously ill patients to lift their moods. He was more subversive than Mike, more acerbic but also more private. Like Mike he started at some ungodly hour, working till late and most weekends. He entered rooms quietly, almost unnoticed, and had a sixth sense for the condition of his patients.

  He immediately suspected I had an infection and, on a Saturday, personally pushed me in a wheelchair to the radiology department for an X-ray, hovering there all day. By mid-afternoon he had seen enough and said we would have to put in a drain.

  This meant using radiology to plot a course from my back to my lungs, and then shoving in a tube that could drain off infected fluid. It sounded unpleasant but was actually not too bad, and luckily Grace was there to hold my hand. Eventually the tube was in and liquid flooded out, about two litres of it. This in just a day or so. Infections flare up in hours. Within days I would have been in trouble. In the event, the infection was killed off by a massive dose of antibiotics that was to last for four weeks.

  Alistair’s intervention strikes me as amazing; he showed almost mystical powers in diagnosing me. He would visit every day for the rest of my stay to check I was all right, and we talked about our daughters, living in Newcastle, and the long walks he took on the Northumbrian beaches with his dog. He was reflective and modest, his low-key demeanour a stark contrast to his enormous importance to the hospital.

  After exactly three weeks, and exactly according to Mike’s plan, I left the hospital and went to the flat in Newcastle where I was to stay for another month. The snows came and lay a foot or so deep on the streets, making walking hard but the views beautiful. There are worse places to be than Newcastle at Christmas time.

  Towards the end of December came the histology meeting. This is the report of the forensic examination of the tissues that determines your prognosis.

  On one level I was optimistic about it. I believed that having gone through all this treatment, I would be OK, and I did not see how the pre-testing would have missed the spread of cancer. But on another I was uneasy. In medicine – like politics – good news travels fast. I was aware that the report would have been available for a while and I felt no indications at all that it was positive.

  Mostly, though, both Gail and I were so numbed that we were almost beyond caring. The last eight weeks had been traumatic and this was perhaps the twentieth time we had arrived for one of these life or death meetings. We were exhausted.

  The Unfinished Life

  We arrived at the hospital and met Sarah, Mike’s deputy consultant, on her way out. She was warm enough but seemed distant, and I felt an intimation that all might not be well. We sat in the waiting room and the meeting was an hour late in starting, something else that did not feel right.

  Mike came in with Claire, a specialist nurse I had become close to. He started with a rather abstract discussion of my general condition, how I felt, how my feeding was going, what my symptoms were. This was not going well: good news always comes early in these meetings, it’s not left to the end. And he was low, his normal sparkle missing.

  Then he said, ‘Let’s move on to the histology.’ He said the margins were good although tight, the tumour had been removed, but the cancer had been more prevalent than expected, had taken hold more deeply. Seven of the twenty-three lymph nodes extracted had been contaminated with cancer.

  Seven.

  I felt slightly sick. I knew this was very, very bad.

  He said there was a very high chance that the cancer would come back. I asked what my chances were: still 25 per cent? No, he said, more like 20 per cent, but he looked to the ground and rather mumbled as he spoke, obviously not really believing it. If I took chemo-radiotherapy then that might add another 10 to 15 per cent, but again he did not say this with great conviction.

  I turned and looked him straight in the eye. ‘Is it going to come back?’ I asked. ‘Yes,’ he said, ‘it is likely that it will.’

  By now the mood in the room was becoming dark. Mike was low, Claire subdued and Gail shell-shocked. I did my best to lift spirits, but failed. We left.

  ‘That didn’t go so well,’ I said to Gail. ‘No, not perfectly,’ she said. We walked on, knowing the future had changed once more.

  I told the kids honestly that the prognosis was not good.

  A few days later Gail left. Georgia came up and we went to a discharge meeting with Mike. This time our mood had lifted and we were pretty buoyant. Mike told Georgia the unvarnished truth about my situation, and she took it well, seduced in part by the positivity of our shared mood.

  A couple of days afterwards Georgia and I went to a coffee morning that Mike and Claire organise each year. We expected to find twenty people sitting around chatting in a side room somewhere. In fact, eight hundred people turned up, completely filling the Newcastle Civic Centre.

  Eight hundred people whose lives had been touched by Mike and his team.

  The longest surviving patient had had his operation performed twenty years ago, just a few years after the unit started. It was as if Mike could see the whole of his life’s work in front of him. If only politics could be so unambiguously virtuous.

  We sat at a table with a group of cancer survivors from South Shields. They were warm and direct, tolerating no nonsense. They immediately took me in hand. We talked about what cancer meant to them. And it was, in essence, what it had meant to me: finding a way to deal with the fears of the night; the importance of community and collective support; the need to be positive and optimistic. Above all was the recognition that cancer is cruel, but it also has the power to change people’s lives. It had obviously changed theirs.

  They had set up an oesophageal cancer self-help group in South Shields that met in a pub once a week, and had an outreach programme for other cancer survivors. They invited me to visit, and I said one day I hope I will. Although miles apart geographically, we shared the same perceptions of cancer and how to fight it. I felt part of a shared journey.

  We spent Christmas out of London in the snow. Just us and the kids. There was no hiding here, we all knew the situation. The family was under strain but we were close.

  Georgia had taken the original diagnosis hard, and tended not to want to discuss my canc
er with me. She had just wanted to be happy and positive and helpful, and seemed to feel that any sign of sadness would betray her anxiety. The problem was too deep to discuss. But Newcastle had released her. Now she accepted cancer and the reality of my situation, and could openly face and talk about it.

  Grace was different – only too happy to talk about the cancer, wanting facts not flim-flam: she wanted data, actual percentages, real lengths of time. And, consummate at black humour, she could joke about it. She talked about it all openly from the start. I think, though, that she was set back by the recurrence; it was not something she had thought would happen.

  I hoped and believed that my relationship with my children was deepening all the time. We implicitly decided to bring the future forward, to compress ten years or so into one.

  The kids sucked me dry. Georgia wanted to know all about the way I thought. How did I develop a concept? What were my values? Why did I believe what I believed? Grace wanted hard, usable, practical advice. At one stage she asked me to write down every likely eventuality that might befall her, and supply a satisfactory answer. Facing the possibility of my departure, she wanted a handbook for life.

  With the children all this was in a way easier than it might have been. It is in the nature of things that children outlive their parents. There is a point of natural parting.

  For Gail it was different. She did not want intensity, or purpose, or accelerated living, she wanted quiet and normality – not the future brought forward but the present extended. She had always envisaged a future free from work where we would just potter around, grow old as companions.

  We had known each other so long that we had created a kind of shared world. After her husband died, Katharine Whitehorn wrote: ‘Marriage is the water in which you swim, the land you live in, the habits, the assumptions you share.’ Pottering around in later life seems the easiest thing to achieve. But now it was something I simply could not guarantee. This was the hardest thing to bear, and it does not get much easier.