When I Die: Lessons from the Death Zone

Postscript ^{Gail Rebuck}

Philip had never been ill. It was as if focus and determination rode roughshod over mere physical problems. That did not stop him from keeping a complete pharmacy at home for every eventuality. Paradoxically, he constantly worried he was ill, but he never was ill. It was not until we went on holiday to Brazil for Christmas 2007, when his indigestion and swallowing problems became more pronounced, that I thought for the first time maybe something was truly wrong.

He had some tests when we were back in London and they seemed to be fine, but then one night he suddenly woke at 3 a.m. feeling very ill. He was as white as a sheet and in a panic, so I called an ambulance thinking he was having a heart attack. We arrived at University College Hospital and went straight into the emergency room but they could not find anything wrong with his heart. We finally put the episode down to dehydration rather than the massive tumour that was growing at the junction of his oesophagus and stomach.

Looking back at Philip’s cancer over four years is like looking at a series of stills – moments of intensity, worry and readjustment. When I went to collect him from the endoscopy he was lying flat, looking ashen. He said simply: ‘It’s cancer and it’s bad.’ The doctor gave him a 50 per cent chance of surviving.

The world really did change in that second and for me it was a moment of total panic. I had never heard of oesophageal cancer, had no idea it had reached epidemic levels and that the chances of a cure without surgery were non-existent. I remember running through the hospital to find the surgeon who had been called in to look at the tumour and pleading with his assistant to get us back in to see him the next day.

This first stage was one of confusion, shock and the desperate search for information. We knew we faced three months of chemotherapy, but this was all by way of a dress rehearsal for the operation, which would be a stark kill or cure.

The choice of surgeon and hospital was the most crucial decision we had to make. In a sense the luxury of having that choice was our undoing. Had we gone to our local hospital and had a radical oesophagectomy, it is possible that Philip would be alive today.

If we had known about Professor Mike Griffin’s world-class unit in Newcastle, things might have been different. But there was no information on centres of excellence in the UK and most of the senior health practitioners and government officials we consulted pointed us towards America.

Philip was very keen on going to the United States. I was less keen, not for medical reasons but because of the practicalities of recovering from such a major operation without the support of nearby family and friends. But after an exploratory trip, America prevailed.

You could not fail to be impressed by the sheer scale of the Memorial Sloan-Kettering Cancer Center and its depth of experience. But when Philip walked into the operating theatre, I had to sit for seven hours in the coffee shop without any information or update. It was the longest seven hours of my life. I tried to calm my nerves by visiting each of the main religious meditation centres dotted around the hospital but all I could do was imagine the worst.

Eventually, I was told the operation was over and that Philip was OK. Like Dante’s circles of hell, in reverse order, I was moved to a waiting area outside intensive care for a couple of hours until the surgeon was ready to see me.

Murray Brennan looked exhausted, his overalls spattered with blood. The operation had been a success but he had had trouble reattaching what was left of Philip’s stomach. He said that towards the end he thought he would have to break Philip’s ribs and make another incision to complete the join, but he eventually managed the less traumatic operation he had intended. Something in his hesitancy worried me. I never told Philip about it but, of course, the tumour regrew in exactly that spot.

I went in to see Philip, who was in remarkably good form, full of drugs and relief, wanting to call the girls in London. They were so happy that we all just broke down together as the tension of the last twenty-four hours eased. The next day, however, he was as white as a corpse, in terrible discomfort, in a tiny room, separated from the next bed by a thin curtain and unable to speak. Every thing was a battle and it was taking place on unfamiliar territory.

Although Philip slowly recovered and even started eating small amounts, one of his stitches became infected. As the hospital did not favour the use of antibiotics, for fear of MRSA, they left the wound open. And that is how it remained – a great gaping gash that turned into a massive hernia as eventually it healed – a ghastly reminder of what had been and how far we still had to go.

But the pathology was good and I still have the congratulatory messages on my phone from the medics in the UK saying this was all behind us now.

I look back at that period in New York and wonder how we all coped with it – the girls at university, Georgia doing her finals and Grace in her first year. I was working from our New York office where Random House had given me all the support I needed to carry on with my day job between hospital visits. My friend Ed Victor used to say that once diagnosed you inhabit Planet Cancer. Philip’s cancer was the new focus of my life – a long strip of land around which family and work forked and flowed like a river on either side.

We returned to London to more chemotherapy and, thank goodness, we discovered Professor David Cunningham at the Marsden. Philip has written about this wonderful hospital but what I experienced there was a level of intimacy and care that made the whole experience much more tolerable.

Unfortunately my closest friend had also taken residence on Planet Cancer and, after an operation for breast cancer at St Mary’s, came to the Marsden for her chemotherapy. I would wander the hospital between the two of them, especially at moments of crisis. Philip was not tolerating his post-operative chemo at all well and my snapshot of him at that time was sitting with his drip on an armchair at home concentrating on his BlackBerry, unable to speak, just holding it together.

My friend tolerated her chemotherapy much better, apart from one ghastly episode when she was hospitalised. I kept Philip and her separate, even though they compared cancer notes on a regular basis, because one day she came over and I caught sight of them together, thin, frail, practically bald. It seemed that the two most important people in my life were going to be taken away and it was unbearable.[1]

Yet in all this misery there were moments of light. At the end of his post-operative chemotherapy Philip was desperate to get away but as we could not fly we were limited to travelling to Europe by train. It had to be Venice, Philip’s favourite city on earth. And it was, as Philip describes it, like moving from the dark to the light.

It was August. We stayed at the Hotel Cipriani for what was probably our most idyllic holiday. Philip kept announcing he could now eat only if he was given brilliantly prepared Italian food. We kept mostly to the hotel, like two inexperienced tourists. One morning over breakfast I noticed a large number of boats bobbing about outside. As we wondered what was going on we noticed George Clooney and Brad Pitt at another table. We had stumbled into the Venice Film Festival.

Life settled into a kind of routine. Venetian food apart, eating was increasingly difficult and mealtimes became fraught. I was anxious that Philip get some nutrients while he behaved around food like a truculent teenager.

The other cancer-free holiday we took was in Jordan. This was a real experiment and although I had arranged all sorts of sightseeing, there was no certainty when we started that Philip would be up to any of it. In the end, as we set off to Petra, Philip was concerned about how uncomfortable he would feel on the car journey. He not only made that; overcome by the sheer grandeur of the experience, he also managed the long walk to Al Khazneh (the Treasury), and even insisted on a detour the next day to visit an abandoned Crusader fort.

These were wonderful moments of joy and liberation. It was clear Philip was fundamentally scarred by his experiences but it was as if he was testing his own boundaries, in the hope of living a semblance of a normal life.

And in a way we were closer than ever. We had been through hell together and emerged the other side. We had spent our lives working incredibly hard, living out our different purposes, worrying about the girls as only two working parents can. We always thought there would be a time after work and parenthood when we would live out our old age together. It looked as if cancer would dissolve that future. That Philip had survived seemed a miracle and those holidays were like a blessing. But it was to be all too short.

Philip’s key moments would often coincide with stressful moments in my work life. Work events may seem trivial when compared to matters of life and death, but life flowed on relentlessly either side of Planet Cancer. Although it was sometimes a struggle to fulfil obligations, for most of the time work for me was an oasis of normality.

I arrived in New York just a day before Philip’s operation as I had had to go to a meeting in Berlin. And two years later, the day of our appointment at the Marsden in Sutton to get some key test results, I was giving a lunch for an American author, who was in London just for the day and was a little surprised when I left early.

I left that table full of trepidation. The agony of waiting for results is familiar to all on Planet Cancer – and it is a life sentence – but in Philip’s case we always sensed when bad news was coming. So it was this time: the cancer was back with a vengeance. All our dreams disappeared that afternoon.

We knew we were running out of options. Philip tried various kinds of chemotherapy but there was very little response. Further surgery was the only option.

At first the Marsden thought we should go back to America to the same surgeon, as he would know his own handiwork. For the first time I put my foot down. I could not face Memorial Sloan-Kettering again, its isolation and organisational challenges, with all the extra complexities this second time around. Although Murray Brennan was up for the second operation, he wanted to do it with a colleague because of its complexity. That worried me too. I didn’t feel either of us would get through it again.

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.

I am very busy on Philip’s legacy, of which this book is a part, as are the film made by Adrian Steirn and the portrait that can be found at the back of this ebook which will be part of the National Portrait Gallery’s collection. I want to help fund more research and support the charities that are building awareness of oesophageal cancer and how it can be treated and prevented.

I have not worked out the purpose of Philip’s death for me, or for our daughters, Georgia and Grace. For us, the core of our life has simply been ripped away.

If we are to make sense of it, then we will do so through Philip’s fearlessness in the face of death, his understanding that there is such a thing as a good death, and perhaps somehow, through this book, as he carries on touching people’s lives and giving them insights. That was Philip’s great gift when he was alive. Let it continue in death.