When I Die

by Philip Gould

  Grace and I sit, having tea, still coming to terms with the fact we will never speak to him again. Suddenly Grace says: ‘You know what Dad would have said then, don’t you? He would have said, “That’s exactly the kind of man you should marry, Georgia”.’ And we both break into laughter. It is his classic line. No one tells you how precious and powerful moments of happiness and connection are when you are living through a nightmare.

  The three of us spend the rest of the day at his side. I put on the Gregorian chants he always uses for meditation, infusing the room with a peaceful, almost spiritual atmosphere. The nurse leaves to sit outside. There is nothing she can do now. The rounds stop. Much of the medical equipment is gone. This is a time for peace and goodbyes.

  Alastair and Fiona visit. He hugs us, seeming incredibly solid. Fiona says Dad was a life force, that he has given us all so much, that we are three amazing women.

  Tony arrives and hugs us all warmly. We tell him about the few days in hospital, Dad’s final purpose. We tell him that Dad had known he was coming in and had been looking forward to it. We leave him alone with Dad to say goodbye. He leaves at about twelve, taking some time to speak to all the staff.

  Ebony, his nurse from the night before, comes to say goodbye at the end of her shift. She says she has only known him for a few hours but that she thinks he is a remarkable person – so kind and polite even as he faces the end, and that he has so much zest for life.

  He seems so strong lying there, the sound of his breathing mixing with the chanting and filling the room. I feel I could hold his hand for ever, as long as he stays with us. I can feel how strong and warm he is, his skin papery smooth. His hand is like a testament to the person he used to be – so disconnected from the rest of him, his shoulders and knees thin and wasted, his arms bloated now beyond recognition.

  Dr Carr comes in and tells us that they can give him the ‘Michael Jackson’ drug, which is a sedative that can give wonderful dreams. We are very worried about him waking up and being scared, so we agree that sounds perfect. He says they will gradually lower the pressure and take off the helmet so he is breathing more naturally. We know now there is not long left. So we talk to him about good times, holidays, places he loves, moments we treasure, hoping it helps his dreams.

  Matthew Freud silently slips in, standing with us, part of the family. He has some time alone with Dad and leaves at about five, tears in his eyes.

  The staff take off the helmet and Dad instantly looks far more fragile. His breathing, rasping and shallow now, comes in short, sharp intakes.

  We read him the messages coming through from his friends, hoping he can hear. We read some poetry from a book someone bought us about grief, somehow giving voice to our feelings. We take turns to break down, then to be strong for each other, like dominoes falling.

  At about seven in the evening, David Cunningham visits. He has been there for the whole journey and it feels right that he is here at the end. He tells us he has seen a lot of death, probably too much, but he has never seen anything like Dad.

  He has always thought Dad is a great man but in August, when he was given the terminal diagnosis, he had really seen what an amazing person he is. All the way through Dad has never shied away from what is happening, has accepted it and faced it. Most people, he said, could not do that, let alone have the ability to give it a voice, describe it. Dad has done a lot of great things in his life, he says, but this is the greatest. He has changed a lot of people, changed him, through his positivity and strength.

  * * *

  And finally it is just the four of us.

  I am holding on to his left hand, Grace his right. Mum has her arm around his neck, leaning on his chest. The Gregorian chant fills the room and as it reaches its last note, Dad gives a shudder and lets go.

  And the room is for a microsecond full of a powerful energy. Mum feels a flash of joy. She is sobbing, overcome, repeating in awe: ‘Philip, I didn’t know it would be so beautiful.’

  I feel as if a huge part of me has been wrenched out. Grace manages to go and get the doctor.

  The life drains from him very quickly. The warmth, the colour, the rhythm of his breathing disappears. In seconds his body is cold, chalky white. And there is no doubt he is gone. What is left is a shell and no longer even really looks like him. The difference between even a thread of life and death is immeasurable. The love, the passion, the spirit that defined him is somewhere else now.

  We kiss his forehead one last time: not wanting to leave, unable to stay. But as we walk out of the intensive care unit, our only comfort is that he has had the death he wanted, at peace and surrounded by his family.

  My Dad

  Grace Gould

  When I was younger Dad was an enigma to me. He was an exotic treat who would come and go, bringing us various trinkets and political-slogan T-shirts from his travels. He would come in, slam the door, and his energy would lift the house. On holiday we would cherish him. We would play games, hide Georgia’s teddy bears, devise elaborate adventures and cause Mum all sorts of anxiety.

  After 2005 Dad changed. He returned home and became more grounded in our lives. For Dad and me this marked the beginning of a friendship. We divided life into two categories: things that amused us and things that did not. Georgia’s boyfriends occupied the former and everything in the latter was often ignored.

  We found random topics to obsess over. I taught him to use BBM (the BlackBerry Messenger system) which he came to adore, bombarding me with hilarious stories or Kate Moss gossip.

  He would come with me to obscure environmental conferences. We would go to the cinema and eat vegan Chinese takeouts at four in the afternoon. The funniest adventure was when Dad came with me to Glastonbury, in a purpose-bought parka. He camped for one night then booked into the nearest hotel.

  Of course these years coincided with me being a horrendous teenager and I am sure these fads formed part of a Yoda-like strategy to bond with a younger daughter who could not name more than three Cabinet members, let alone a QPR player. But he made it work and we found our way to relate.

  When Dad became ill he changed once again. He mellowed, his energy shifted from an over-excited bustle to quiet force. He channelled his intensity first into staying alive and then into learning how to die. Our relationship shifted too. Our irreverence for life was now directed at cancer.

  I felt that during this time Dad and I became much closer. We spoke candidly about his death, his funeral, our future without him. He would talk about his insecurities, symptoms and fears. And when the time was right – and more often when it was not – we would descend into the ridiculous, joking about all the absurdities that came with cancer.

  I do not think that I am the only person slightly terrified about how to live without Dad. He was the first port of call for so many. At Dad’s funeral, his close friend Noreena described how he used to sit holding court, with a constant stream of people coming to visit him for advice. Although I would never have dreamt of saying this to Dad when he was alive, he did have a fantastic gift for knowing what was going on, telling you what you should do and then reassuring you that if you did it, then everything would be OK.

  Before he went to Newcastle he wrote Georgia and me each a letter to be opened only after his death, and gave us five rules for life. In his letter to me, he wrote:

  I know that you want me to answer every question that the future holds but I can’t do that. Or at least I cannot do that in the way you wanted. What I can say is this: if you are yourself, if you trust yourself, if you believe in yourself your life will be fine. As for the rest of it: be generous and warm-hearted and always send a thank-you card. This is all you need to know. And if you get really stuck ask Matthew, and if he can’t help, ask the universe. The answer is out there and I promise you, you will find it.

  Postscript

  Gail Rebuck

  Philip had never been ill. It was as if focus and determination rode roughshod over mere physical problems. That did n
ot 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 gi
rls 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.