When I Die

by Philip Gould

  I pleaded with David Cunningham that there must be somewhere closer to home. We were going to see one of the Marsden surgeons but Professor Cunningham explained that very few people would be willing to attempt this second operation. Then he mentioned Mike Griffin. Philip explains the long courtship and measured response he found in Newcastle. I went up there to collect Philip from the first of his tests, one of many, many commutes on GNER.

  Professor Griffin was upfront and unequivocal – he would do the operation but he wanted me, in particular, to be fully briefed about the risks. I diligently wrote them all down, like a macabre shopping list. Eventually we got the go-ahead. We moved to Newcastle, to a central flat on Grey Street that I teased Philip reminded me of Footballers’ Wives. The night before the operation we went to dinner down the road and I was so out of sorts I left my handbag in the restaurant.

  Another operation, another coffee shop. Worry is like a kettle full of water, it felt as if my mind was on the boil at a ferocious intensity with no opportunity to let off steam. There is nothing you can do but get through it as best you can.

  After the operation had been under way for about five hours, I decided to go for a walk. I bumped into Professor Griffin coming out of the operating theatre at the end of round one. It was another gruelling five hours until I saw him again in his little office. The operation had been the kind of success that only a master surgeon could have achieved.

  Professor Griffin said that towards the end he had thought of removing all of Philip’s stomach and creating a pouch for food out of his colon, but that would have taken another four hours. I could tell he was reflecting on this decision. So I said: ‘But when you looked at Philip, as you have looked at thousands before, what was left of his stomach looked in good shape so you decided to leave it there as the best option for the patient. It was a decision you made on the basis of years of experience.’

  He replied: ‘So you really understand about decisions.’

  ‘Yes I do,’ I said, ‘but at least mine do not involve life and death. And I think you made the right one.’

  I did not tell Philip about that conversation either.

  The intensive care experience in the UK was very different from what we had found in New York. Although I had been warned, nothing could have prepared me for the sight of Philip intubated after the operation. He looked like a corpse. The staff were going to keep him under sedation all night so I was told to return early the following morning. When I did, they had removed the tube. But Philip was barely conscious and clearly in a lot of pain, so I just sat there and tried with little success to interpret what he wanted. I don’t know how I held it together – but I tried to be strong for both of us.

  Philip writes about the elasticity of time in the Death Zone – how it becomes positively distorted into emotional time. That was also true during and immediately after both his major operations. You only think of getting through the next hour. That hour seamlessly melts into another hour, and so on. Real time and life are suspended since your whole focus is on the patient, as if you could will them better. Rituals also play a part: the walk to the hospital, coffee from the hospital shop, topping up the TV card. The thousand little inconsequential actions that measure out the day.

  Everything about Newcastle was solid and reassuring. Philip could not have been in better hands. But when we came in just months later to hear the results of the pathology it was bad news all the way.

  This meant radiotherapy back at the Marsden and a feeding tube. How I hated the sound of the feed going in at night – the alarm beeping if it had become disconnected and thick yellow gunge pouring everywhere. But the feeding tube was Philip’s lifeline and I guarded it like a precious jewel.

  Philip was always almost pulling it out; each day I examined the stitches that held it in place with tremendous panic.

  Life settled down into a pattern of sorts again – me coaxing Philip to take his pills and to eat a little to supplement the tube. I worried about him constantly. Somehow it was easier to worry than to face up to my underlying fear of a life without him.

  With his return to a routine, I thought it would be safe to go to the Jerusalem Book Fair, something which I had promised the organiser, Zev Birger, I would do for many years. One of our authors, Ian McEwan, had been invited to receive an award and that decided me. I left Philip with Georgia and Grace, and a nurse, and set off. I was sitting on the plane when Philip called and told me not to panic – never a good sign. He had pulled out the feeding tube and he and Georgia were at UCH, with Newcastle explaining what had to be done. If you fed a tube back into the channels left by the old one within hours, they were told, it would avoid another operation, and a great Italian emergency care doctor was able to do just that. But I worried all the way to Jerusalem.

  The tube became a feature of our lives for several months, with many trips to UCH, until after the radiotherapy when Philip pulled it out once and for all.

  Thanks to the medical staff in Newcastle we had a year that would otherwise not have happened. We even managed a summer holiday in Italy, staying in two extraordinary hotels, a dream of Philip’s for many summers. But all was not well. When you live close to illness, sometimes it takes a change of scenery to notice changes closer to home.

  Philip did eat for the first week but he was getting thinner. He was almost skeletal. The second week he could hardly keep any food down and I was almost relieved that he spent all his time finishing off the update of The Unfinished Revolution, sometimes trying to work alongside me in a flurry of papers. I knew he was very ill, but there would be a time and a place to face all that.

  When we arrived home, the tumour markers exploded and that was that. Devastating. Blind panic. I said to a friend at the time I felt we were speeding towards a brick wall – but in slow motion. I had no idea how to cope with the impending collision.

  Professor Cunningham recommended palliative chemotherapy, but before that started we needed to reinstate the feeding tube.

  As Philip describes, it was one of the worst post-operative weeks. The surgeon who performed the operation had gone to China and we had a strong sense of an endgame being played out where different views clashed. In the end, as difficulties mounted, the hospital stopped all food.

  Constipation became a problem but they could not give Philip anything for it in case there was an internal leak. He could not take in any food through the tube as his system was backed up. A macabre catch-22. I longed for Jervoise Andreyev to suggest a way forward, but he was on half-term break. When he returned we had at least established there was no leak; he prescribed a purge, after which things reached a kind of equilibrium.

  This brought us to the three days of reckoning between Philip and me. I remember coming in one day to the Marsden and finding him very low. It was as if the gravity of the situation had defeated him. It was the first time I had seen him so sad about what was happening and it devastated me.

  There had been many times throughout the previous four years that Philip had been in pain, brought low by discomfort, but he had always held out hope – reframed the situation to eke out a tiny piece of positive news. But now his illness was closing in on him – on us all – and, for a moment, he was deeply upset.

  Philip had written and spoken a lot about purpose, and in particular the purpose of his cancer, but at that moment there seemed to be no purpose – just sadness and loss.

  I think all the symptoms he had been suffering took it out of him. As I watched him suffer I would hate being powerless against the forces that had taken over his body. Little is invested in symptom control for cancer sufferers, and not a lot is written. Most hospitals, including the Marsden, have excellent palliative care units which deal expertly with pain control and the symptoms of the dying, but until you are on their horizon it is a hit and miss affair.

  Sickness, as a side effect of chemotherapy, is well catered for, but little money goes into Dr Andreyev’s area of expertise: the whole gamut of digestive problems
arising out of chemotherapy and radiotherapy. It is a miserable list of complaints if ever there was one, and the subject is not often talked about.

  Dr Andreyev’s work is not curative, but if followed diligently the simple drug routine he offers can transform lives, as it did Philip’s. Professor Griffin was very interested in Dr Andreyev’s work for his centre, which is why this is one of the two charitable causes that any royalties from this book will help fund.

  Philip had always lived his adult life with a plan. It was sometimes invisible to those closest to him but he was normally working on several levels at the same time, playing a long game. This combined with the extraordinary instinct and insight which was his unique gift. His focus groups would be so effective because he not only observed people but got to their motivations, probing until he dragged out the deeper sentiments that characterised their world view beneath the surface flow of opinion.

  He would have this effect even on people he met only briefly, as so many letters after his death have testified. In just a short, intense conversation with someone he could arrive at the fundamental truth about them and their purpose and provide an insight or direction that could transform their lives. I keep meeting people – most recently in the departure lounge of Delhi airport at three in the morning – who have stories to tell of Philip’s transformative power.

  Friends, too, speak of how generous he was with his time – always counselling wisely, getting to the essence of a person and giving them the confidence to achieve what they wanted, and of course giving brilliant advice. In fact, in his last years, while working with Matthew Freud, he mentored a series of politicians, academics and business leaders, moving effortlessly between them until he was too ill to travel. Even then, they would come to him.

  Philip’s game plan on the matter of his death was not immediately apparent to me or the girls. We knew about his renewed search for purpose but did not know that he was about to go public on death and dying.

  I knew he was doing two interviews for the publication of The Unfinished Revolution. After being interviewed by Andrew Marr, he called me to say that he thought it had gone well but that there had been a question about his illness at the end; he had got into some ‘deep stuff’, he said, but did not think it would be broadcast. It was, therefore, a huge shock for us all when we watched the interview on television that Sunday. We were all in tears.

  When he gave an interview to Simon Hattenstone of the Guardian, whom I regarded as a master of cutting personal remarks about his subjects, I was uncomfortable. I thought Philip a bit vulnerable in that department and I had become more and more protective of him as his health declined. Yet again Philip was the king of understatement. The interview had largely been about the book, he said, ‘but I got into some heavy stuff about death’.

  This interview too turned out to be intensely personal. Too much so for me, but it was incredibly powerful and is often referred to in people’s letters. It touched a lot of lives, as did the interview with Andrew Marr. Simon made a profound connection with Philip and they became friends, even exchanging texts about football. I remember one coming in the day before he died.

  The next part of the plan revealed itself through Adrian Steirn, who had teamed up with Matthew Freud on a project about iconic figures both in South Africa and worldwide. Adrian was a remarkable photographer and film-maker and he wanted to photograph Philip and interview him about death. They decided the photograph would be taken at his grave at Highgate Cemetery.

  Part of coming to terms with death for me was preparing for it in the only way I knew how, which was practically. I told Philip that if he left the funeral to me I was bound to choose the wrong service or the wrong music. So it became a joint project entailing many meetings with Alan Moses and visits to St Margaret’s Church. This plan was to include cremation and burial. But first we needed a plot.

  The girls wanted somewhere nearby, so they could visit regularly. Philip and I set off for Highgate Cemetery and met the chief gravedigger, Victor Herman, who took us on a tour of his domain. He pointed out various plots but we were clearly not that keen. As we were walking up the hill to the entrance he stopped and said, ‘Oh, this one may be free.’ It was perfect, right in the middle of things. The sun was shining, the flowers were out and we both felt at peace there.

  Back to the office we went, where Victor pulled out a musty old handwritten ledger worthy of Harry Potter, and confirmed that the plot was free. I bought it there and then. Victor has lived his life around death and he combined sensitivity, gravitas and humour in a way that appealed to us and relaxed us both. I genuinely felt we had chosen the right place, a welcoming place.

  All this preparation and ritual may seem odd, but for me the practicalities were immensely comforting. It also relaxed Philip, who apart from being insightful was a bit of a control freak. He was reassured that all would be as he wanted it. I knew he worried about me dealing with it alone and didn’t want to leave me with any confusion or worry. It also enabled him to envisage his new resting place, which he found peaceful and soothing.

  * * *

  Adrian and his team arrived to take Philip to the shoot at 7 a.m. on Thursday 27 October, just eleven days before he was to die. I was worried about the cold and insisted he take a hot-water bottle, a suggestion I think Philip ignored as he was enjoying having so many talented young people around him. I called him continually, knowing how easily he forgot his limits. That Friday we went to the country, where the second part of the interview was to be recorded.

  Philip looked very frail and when he walked up the stairs he became a bit breathless. I thought he had caught a chill at the graveyard. By the end of the weekend the breathlessness increased and it was very pronounced on Monday night back at home. I could sense there was something seriously wrong.

  The terminal diagnosis loomed in front of us. It was hard not to wonder if this was it. I wanted to call the hospital right away, but Philip insisted on waiting until the morning when we were going in for the chemo that was becoming increasingly difficult for him to tolerate. He was so ill the next morning I called the hospital in advance to arrange an X-ray.

  Georgia writes about what happens next. It was the most intense week of my life. All Philip’s closest friends came: Tony Blair, Alastair Campbell, Matthew Freud, supportive of us all as ever. His sister, Jill, of course. And friends from all over were in constant touch.

  We created our own little world in that intensive care room, but Philip was fading from us. On his last day of consciousness he asked for his laptop, but he had clips attached to all his fingers and could not type. We took them off and he still could not type, so I said I would type for him. He kept repeating himself and often I would try to tell him he already written something – but he was having none of it. I could hardly bear to listen to his rasping voice, aware of how much every word was taking from him.

  He was so intense that day, so fearful, so resisting of death yet also resigned to it. A broken body but a mind still clutching at life – urgent, engaged, desperate to be heard – a life force his cancer-riddled body was trying to extinguish. The previous night he had written on his pad: ‘Wonderful the way Grace, Georgia and you held my hand last night. Total blessing.’

  Philip knew death was coming, as Georgia writes. His dreams told him. After the dark stuff he said he dreamt of bright shining palaces and multi-coloured works of art, dancing and joyousness, intricate patterns flashing one after another all leading to a road without end. These dreams were, he said, amazing.

  I have discussed the moment of Philip’s death with many friends, some religious and some most definitely not. It was an incredible moment of bliss as he shuddered and died. It was as if I had glanced at infinity and felt the small hospital room suffused with light. My rational self says I probably imagined all of this – that this moment was a combination of emotional intensity, exhaustion and the Gregorian chant we had listened to for ten hours – but I would like to believe it was Philip’s last gift
to me as his soul departed.

  I am not sure that anyone ever comes to terms with the finality of death. Grief is unpredictable. The first month after Philip died was agony. The grinding, prosaic, formal processes – obtaining the death certificate, probate, making the funeral arrangements – mixing with shock and the inability to grasp what had happened.

  For a while after he died, Philip’s BlackBerry sat at the side of my bed, flashing red, but only with spam and circulars. It had been his lifeline for so long, his preferred form of communication, that its deadness now seemed only to reflect his loss. Then one night it rang. I was so shocked that I failed to answer it in time. I turned to Philip to say that some idiot who didn’t realise he was dead was phoning him in the middle of the night. I had forgotten for a split-second that there was no one to tell.

  I can easily see how people might be unable to move on after death. I spent the months after Philip’s death feeling truly comfortable only when talking to friends or authors who had been bereaved. I was given reading lists but could concentrate on nothing but poetry. Apart from the medical and feeding paraphernalia, which I got rid of the day after Philip died, I have not been able to move any of his belongings. I fear I am in danger of becoming a little like Miss Havisham. It is the sheer ‘gone-ness’ that is so impossible to process.

  People have asked me why I did not take three months off work after he died. I cannot imagine what they think I would have done with the time. Grieving does not confine itself to specific periods.