When I Die

by Philip Gould

  I arranged a conference call between Murray Brennan, who had performed the surgery, Gail and me. I expected him to knock any possibility of surgical problems out of the park with his normal self-assurance. But he did no such thing. With some courage he said that he believed he may have adopted the wrong strategy with the surgery, and as a consequence had left too much of the stomach in, where he now believed the cancer cells may have lain dormant.

  He was saying he had not been radical enough.

  I took this well, and admired his honesty. Gail just issued a quiet, guttural groan, not of sadness but of suppressed rage at the unfairness of it all.

  Gail is never at her most relaxed when hearing bad news, especially when its cause was in some way avoidable. In effect the British surgeons had been right: radical was best. But this could be said only with hindsight. The decision had been taken totally on its merits and the responsibility was all mine.

  Later I talked to Murray about the surgery, reminding him that he was and is a great surgeon, and that sometimes things just do not work out. That is in the nature of life.

  Murray called me at every stage to offer support and encouragement. He stayed on the pitch for the whole game. He is an admirable person.

  David Cunningham was not giving up. He suggested Professor Mike Griffin at Newcastle’s Royal Victoria Infirmary. Mike had established the Northern Oesophago-Gastric Cancer Unit, the largest oesophageal unit not just in the UK but in Europe. David believed that Mike was pretty much the best oesophageal surgeon in the world at the moment, and that he was at the peak of his form. Mike would tell me honestly and objectively if surgery was possible. I should go up to Newcastle just as soon as I could.

  I phoned Murray Brennan. He said that he knew Mike Griffin well, had been to his unit more than once, and that he was probably the best person anywhere to do this surgery. He also said that he would have been the ideal person to have performed the original surgery, and blamed himself for not recommending it.

  It was not his fault, of course. In dozens and dozens of conversations with senior representatives of the NHS and beyond, no one had mentioned Mike Griffin or Newcastle to us. Alan Milburn, who was always caring and considerate towards me, later conducted some research, spending a whole morning on the internet trying to find whether a normal cancer patient could connect either to Mike Griffin’s oesophageal unit or indeed to any other specialist oesophagus unit, but he failed. From a London perspective at least, Mike’s unit was in a kind of information black hole.

  That night I phoned Mike Griffin and immediately took against him. I had grown used to relaxed, intimate conversations with consultants in which pretty much everything was conducted with a kind of casual equality.

  Mike was having none of that. He made it clear that he would be making the decisions, not me, that there was absolutely no certainty that the operation could be carried out, that this was the NHS and that he was in charge. There would be a week of tests, then a team meeting to decide what treatment was appropriate. He just took the situation over.

  I did not like this at all. I wanted the operation to go ahead whatever the tests said, and I certainly was not prepared to cede control to anyone.

  I arrived in Newcastle on 21 September 2010. It was a very different journey’s end this time. Kennedy Airport in New York was one thing, Newcastle Central Station quite another. My train arrived beneath a Victorian edifice held together by huge arched spans, the essence of a British railway station.

  I took a taxi to the hotel where I was to spend my nights, a large, impersonal building overlooking the Tyne, although with amazing views of a clearly transformed city. Newcastle might not quite be New York, but it still had power of its own.

  Far too early the next day, I took another taxi through the drizzle to reach the Royal Victoria Infirmary, a stone’s throw from the Newcastle United football stadium, St James’ Park.

  I was stationed for the week in a tiny little ward not far from the oesophageal unit. It comprised just five cubicles, and most of the others were empty. The nurses could not have been friendlier. I had some basic tests and then lay on my bed and waited.

  Mike Griffin came in and I immediately realised that I had misjudged him. He was dressed in his scrubs and exuded confidence and authority, his presence immediately making me feel safe. He sat down on the bed and was disconcertingly direct. My position was very serious, only surgery could save me, he said, but there was no guarantee at all that I could have it.

  The tests would be taken and at the end of the week my case would be debated at a team meeting. It was not just his decision but the team’s. He was very tough, but his toughness was reassuring.

  He had gone to school at Fettes where he was a contemporary of Tony Blair, although my long association with Tony was not in his view necessarily a mark in my favour. He had played rugby for Scotland, moved into medicine and then decided that oesophageal cancer was his life. He had looked for somewhere to set up his unit, decided on Newcastle and then built up the largest and probably the best centre of its kind anywhere in the world.

  He worked seven days a week, usually starting at half-past six in the morning and finishing at ten or so at night. He never stopped, seeing all his patients twice a day, sometimes more. He instinctively distrusted southerners, New Labour and private medicine, which meant I had a lot of ground to make up.

  I completed the week of tests, culminating in an endoscopy which he performed himself. Later that evening he came in to see me, and I felt that in some way I had won him round.

  He could not say for sure if the surgery would go ahead, but he was prepared to say there was nothing in the endoscopy that would stop it happening. He was giving me a very faint green light. Then we chatted about cancer and life and I started to talk – typically – about my cancer journey.

  He stopped me dead in my tracks, looked me in the eye, and said the one mistake I had made was leaving the NHS. If I had stayed inside it, I would not be in this position today. I argued back, explaining my particular circumstances, but it was all humbug to him. I had left the NHS and I had blown it. He loved the NHS, and he believed that what made it work and what made it special was a commitment to public service that transcended private interest.

  He was uneasy about private medicine, particularly in the treatment of cancer, believing it to be corrosive and distortive of clinical priorities. I do not believe he is right, but there is truth in his argument: there is an extraordinary spirit of public service at the absolute heart of the NHS, which is why people value it.

  But even Mike was not totally closed-minded on all of this.

  He knew Murray Brennan well and admired him, and thought Memorial Sloan-Kettering a remarkable hospital. But he believed that in the end, when it comes to health, private means bad.

  In this he was my polar opposite. He was happy and comfortable with private schools, while I am not; he was sceptical of private medicine, while I am much more open to it. Perhaps it was because his father was a reputed surgeon in the NHS and my parents were both teachers in state schools. But he was right about me, I would have been better to have stayed in the NHS.

  If only I had listened to Georgia.

  The next morning Gail came up and we waited nervously for Mike’s verdict. I was more optimistic because of our meeting the night before, but after so much bad news my capacity for hope had withered somewhat.

  Mike immediately made it clear that the operation was possible. Even if surgery was successful, however, I had only a 25 per cent chance of five-year survival. And there was a 30 per cent chance that they would start the operation and not be able to finish it because the tumour could not be removed, which to me was a horrible prospect.

  There was about the same risk of removing the tumour and not being able to reconstruct my oesophagus, which meant I would have to have some kind of feeding tube in my throat. This did not seem to worry Gail, who just wanted me alive, tube or not.

  A second operation of this sort was
taking me into unknown waters. It would be much tougher than the first and there was no way of predicting how difficult it would be, nor in all honesty its impact on my quality of life.

  I asked how long I would live if I did not have the surgery. Mike replied: six months to a year. He asked what my decision was: did I want the surgery or not? It was a stupid question; of course I wanted the surgery. I had fought for it for months and now it was going to happen. I did not mind if I walked around with a tube in my neck, I wanted life. He gave me a date – 26 October – and we went home, happy.

  * * *

  I used the intervening period as best I could, spending a lot of time with my daughters, going on trips with both, and to Venice again with Gail. Grace stayed with me for much of the time, which was wonderful. Georgia was always around. I got as fit as I could, rewrote my letters to my family, and went once again to see the vicar about the funeral. This time I was stronger but sadder. I did not want to leave my family, and especially not my wife.

  On the Friday before the operation, Tony came to see me, just as he had on the eve of my previous surgery. He said one of his most precious possessions was a sixth-century ring from Mount Sinai. He gave it to me for luck. I was touched but anxious, certain that I would lose it. I lose things very easily.

  I travelled to Newcastle with Gail on Saturday 23 October and arrived at our flat, which was modern and flash, like something out of Footballers’ Wives. It was in the heart of the city and you could see and hear the nightlife. Nothing, not rain or gale force winds or severe snow, stops Newcastle kids from going out at night and having fun. But they were all so friendly, it was impossible not to love it there.

  That night we joined in and had dinner surrounded by a crowd of incredibly glamorous-looking young people, easily forty years younger than me. We walked back through the cold, picking our way through students using the pavement as a temporary bed.

  The night went well. By now we were old hands at pre-surgery sleeping. The next day we arrived at the oesophageal unit – Ward 36 – exactly on time, as though punctuality would in some way increase my chances.

  I was put in a reasonably sized cubicle with a television and a little shower room. And then we waited as a stream of clinicians explained to me how dire my immediate future looked.

  This is Mike Griffin’s way: to be totally honest and totally explicit about bad news. One after another they came in: the excellent anaesthetist, Conor Gillan, who said an epidural was the preferred method of pain relief, and that it should work, but might not; Rachel, an outstanding specialist nurse who said it would be tougher than perhaps I thought; and then a representative from the intensive care unit, who said it would be like a kind of torture: deprived of sleep and food for at least a week.

  And in the middle of this Mike dropped in, clearly anxious, making it plain that there was a serious chance that the operation would have to be aborted after it had begun. I shared his fear; I hated the thought of waking up to failure.

  By the end of the day, I was drained of energy and emotion and Gail had just had too much. We were battered into submission. Mike came one last time, saw Gail and moved to reassure her. When she left I felt lonely. I slept a little but woke often, hoping the morning would come slowly.

  Gail arrived at six, and with incredible strength had recovered all her poise. And then we started an absurd domestic row. I, like a fool, had been drinking water during the night, and a nurse had said this might be a problem for the surgery. Gail simply could not believe I was capable of such complete stupidity. But the bickering got us through the next hour.

  Then Mike came in, exuding an aura of confidence that completely calmed us down. There were no doubts now, no worries about an aborted operation; he had risen to the moment.

  At 8 a.m. they came for me, and for the second time in two years I left Gail for a serious operation. I walked through the corridors leading to the operating theatre with an equal mixture of fear and excitement. There was no escape now. I had to do it, and although I was scared, I was also resolute. I was up for it.

  The Bottom of a Murky Sea

  I walked into the small pre-surgery room where Conor, the anaesthetist, would administer the epidural. Starting to feel anxious, I held on to the excitement and the determination that was driving me through. But I felt the surgery coming towards me like an express train. There were only moments left.

  Courage is supposed to be grace under pressure, but it is really composure in the face of inevitability, being strong not just when the odds favour you, but when they most decidedly do not.

  Conor did well with the epidural, but struggled with the boniness of my back and my evident anxiety. At one point he jammed the needle into a rib and the pain was excruciating. I was starting to unravel, but somehow he finished the procedure and then, thankfully, all went blank.

  Gail, meanwhile, had to endure another desperate vigil, waiting almost twenty-four hours for me to come round. From the start people were calling and texting, anxious and concerned. But they knew that no news was good news and that the longer the operation went on, the better.

  Hour followed hour. After five hours or so Gail went for a walk and bumped into Mike as he took a break. He told her the surgery on the stomach had gone well, and now they had to turn me over and break through into the chest. It was clear that the operation would not now be aborted.

  Five hours later, Mike emerged again and told Gail that while the operation had been difficult it had been a complete success. She rushed in to see me. I looked, she said, far more dead than alive, but she sent out an email to all my friends saying that Mike had performed a miracle.

  Because of the severity of the surgery they kept me sedated and breathing through a ventilator all night. Gail was struck by the way that the intensive care staff watched me, unwaveringly vigilant. At about six they decided to slowly wake me. I came round in a way distinctively different from my New York experience.

  Then I had awoken to a bright light almost full in my face. I remember feeling close to the sun. This time it was as if I was at the bottom of a murky sea, the light far above me, subdued, distant, swirling with the waves.

  Gradually the light got closer and I heard sounds. Immediately a voice said: ‘It’s over, the surgery has been a complete success.’ In a second I was calm.

  Then I felt the ventilating tube in my throat, vast and obtrusive. I started to cough, feeling spasms of unbearable pain in my throat where the ventilator met my wound. The more I coughed the worse the pain, and then it became intolerable, just beyond description.

  My heart rate shot up and the pain, the panic and the sense of suffocation combined to produce a moment of complete blackness. I knew this was the biggest test of my life, one that I was not certain I could pass.

  I did not feel alone, though. The pain somehow connected to the suffering of others in the world. At this crucial moment I felt not isolation but empathy, some kind of recognition of the power of the human spirit.

  I used every resource I had to control the pain. I tried meditating but it made no difference at all. I attempted to pray but could not get a foothold. The pain and panic just rose. And then I thought of Gail. If she could tough it out through the day and the night, then so could I.

  And that was enough. I was able to hang on until they pulled out the ventilator. The moment had passed, I had got through it. Just.

  * * *

  I saw as if through a watery lens that Gail had arrived at my side. I could not talk, I had tubes everywhere, I must have looked ghastly. She was nervous, anxious, tired, but vibrant with hope and love. She said one thing over and over again: you have made it.

  And then, to gain some peace, I held up my finger to indicate quiet. Gail looked at my raised finger and saw it instead as a demand. ‘He wants something, but what is it?’ The nurses gathered round to try to find out. Ungratefully, I slumped back, thinking: why does no one understand me? But this note of domestic disharmony was a small comfort too.


  As my vision slowly returned I was able to make some sense of the space in which I now found myself. I was surrounded by instruments, tubes and nurses. There were twelve beds, with a central supervision area. As I looked I saw the contrast between the brightness of the intensive care unit and the darkness around me. My neighbours included not only seriously ill people moving towards recovery after their operations, but others in a state of grave illness, fighting off death, kept alive by medical science and impressively dedicated care.

  One man had serious pneumonia and lay there unable to speak at all or move much, in a kind of permanent limbo of suffering. Another had endured a major stroke and groaned constantly day and night. One day one of the patients was in such emotional and physical pain that he indicated he wanted to end his life. A friend sat by his bed and prayed.

  I had never been so close to pain, death and severe suffering before. It affected Gail greatly, making her feel that life hung by a thread, that the path you walked in apparent security but was in fact treacherous. It affected the medical staff too, especially the younger ones. Sucked so close to death, they had to find a way of dealing with it. They wanted to talk about it: what did it mean, what could and should they do about it?

  There were moments of hope and mystery. On my second day in intensive care, one of the patients was visited by his sister and his wife. They sat down – one elderly and white-haired, the other middle-aged and sprightly – and started to sing, not quietly and privately but loudly and confidently. Without warning, the haunting cadence of ‘Danny Boy’ filled the room. And then a remarkable thing happened. Everyone in the room stopped what they were doing, turned to the singers and froze, trapped in a moment somewhere between the real and the ethereal. And they stayed there, unmoving, until the voices fell silent five or six songs later. It was as if time had stood still, replaced by the sublime.