When I Die

by Philip Gould

‘Girls, four days left to try and change the world. You can do a lot in four days.’

  The three of us left that night together at about eleven after he had fallen asleep, exhausted but a lot happier. The house felt very empty and we all floated about a bit, struggling to sleep.

  Thursday, 3 November

  On Thursday, Grace and Mum got to the hospital very early. Grace had to leave in a couple of hours for a work shift and Dad had visits from Matthew Freud and Professor Cunningham. By the time I came in mid-morning, Mum was sitting working away on her BlackBerry and Dad was resting, exhausted from a busy morning. Mum never stopped working, finding an hour here and there when Dad was sleeping, still on top of things even when her life was falling apart around her.

  Dad had a long conversation with Matthew and I knew that meant a lot to him. Dad loved Matthew like he was family.

  * * *

  Mum told me Dad had been telling Professor Cunningham that he knew he was approaching death because of the dreams he had started to have. They were intense, extraordinary dreams like nothing he had ever experienced. He would be overwhelmed by the richness of what he saw – a beautiful city, just out of reach, made up of a kaleidoscope of colours, paintings, tapestries and buildings. This would be interspersed with periods of blackness. Somehow he felt death was calling him.

  I came in with an article I had written for our local paper and Dad immediately perked up. He was always our biggest fan, so proud of our achievements, dismissing our failures as learning experiences. He spent about forty minutes carefully struggling through the article. By then his breathing was declining even with the machine’s support and we were trying to stop him speaking so much. But he kept telling anyone who came in, this is my daughter, this is her article.

  I left the room so the nurses could help him off the bed on to the chair. When I came back in he was very proud of himself, told me he had made a funny joke. As he had got up, wearing his bubble helmet, he said: ‘One small step for man.’ He kept laughing at his spaceman analogy. He spent so much of his last few days smiling and laughing, his happiness lifting all of us. He was in so much pain and discomfort but somehow his spirit took him beyond that.

  Mum had to go out for a meeting so I spent a difficult couple of hours with him. His helmet kept leaking air, drooping round his face, making him claustrophobic. At the same time, without the extra pressure he was instantly short of breath. It just kept happening, and I watched the stress grow in his expression each time as his numbers dropped, try though he did to suppress it.

  But he had a wonderful nurse who kept him calm, coaxed him through and eventually helped him rest. While he was sleeping she filled up the noticeboard, wanting to know his likes and dislikes. Earlier Dad had announced to the room, ‘The love you take is equal to the love you make,’ quoting the Beatles’ song ‘The End’ on Abbey Road. So she wrote that up as his motto of the day.

  There was a constant stream of nurses who took care of Dad and they were all very different. I remember him writing that cancer had changed his view of leadership, that he had been sustained time and time again on his cancer journey by strength in extraordinary places. And not one nurse we met in that week failed to live up to this. They all worked long hours without ever showing a lapse in concentration. They were always ready with a smile, a word of comfort, and they made us feel totally at home. We met so many different people but everyone seemed somehow familiar. There seemed to be an army of people looking out for him. They were as worried about his needs as we were – whether he wanted his glasses on or off, how he was breathing. Eventually they even constructed a little straw so he could drink without losing air.

  Overseeing it all was Dr Carr, the head of the intensive care unit, who never seemed to leave or sleep. He was the absolute best of the NHS, he gave the whole family so much reassurance and somehow he made what should have been the worst five days of our life bearable. I know Dad loved the camaraderie of the medical staff; he always took energy from other people and he felt comforted by the constant security. The night nurses in particular took him through the darkest hours, in both senses of the term.

  That evening the doctors were concerned about Dad’s breathing, the strain it was causing, how much he was struggling. I could sense the evening nurse’s extra watchfulness and anxiety and it was decided to up the support he was getting from the helmet to 100 per cent. This was as much as they could do to help him, yet it was clear that he was not improving. There was still a vague hope that the situation would turn, but it was fading fast.

  Grace came back after work and was very low. She says she remembers Dad looking at her.

  ‘What’s wrong, little Gracie?’

  ‘What do you think is wrong, Dad?’

  Grace and I went to get some food for dinner and, in our exhaustion, started squabbling when it took ages to arrive. It was always worse when you left the hospital. The uncertainty left you feeling constantly on edge. Any beep of the phone filled you with total dread. Mum and Grace would answer the phone in the same rushed, urgent tone: ‘What’s happened?’ I knew I did the same thing. It was much calmer in the room, watching the machine, knowing what was happening.

  Dad was exhausted and slept through most of the evening. Thursday had been a tougher day and we were starting to prepare again for bad news.

  Mum later said there was a paradox to Dad in those final days. There is no doubt he had moments of fear and uncertainty. He was battling against death to the end. But fundamentally he accepted what was happening to him, faced up to what was coming with composure. Feeling empowered was essential to him. He had a tranquilliser that he hid in one of his books and this became his comfort blanket. It was always near him. By the end there was no way he could have taken it alone, but somehow it gave him protection from the forces ranged against him. It helped him stay calm.

  Friday, 4 November

  Friday morning Mum had gone in very early to catch Dr Carr on his rounds. He made it clear to her that it was definitely three to five days now and that the infection was not going to turn. I remember coming in just afterwards and Dad worrying if Mum had told me, but she did not have to say anything. I already knew he was deteriorating.

  I had gone shopping to get him some lime cordial and ice and he was delighted. He kept saying it was the best thing he had ever tasted. After every sip of cold water he would close his eyes and smile with a look of total contentment.

  Mum was in tears at lunch as she worried about the time after the ordeal ended. I told her we would get through it together, walk through the pain, have good days and bad. I remember holding her hand, feeling helpless, knowing there was no real comfort for any of us.

  Adrian Steirn’s team came by with ten copies of the pictures they had taken of Dad standing defiantly on his grave. They wanted him to sign them. They asked tentatively if they could take pictures of him doing it. It was strange to see their evident shock and distress at how he looked. To me, it had become familiar.

  He struggled to sign the pictures, getting me to test the pens, frustrated that his body would not respond to his wishes. He exhausted himself in the process. I could feel Mum worrying and thinking: even now he won’t stop. Dad was proudly telling all the staff that the picture was taken at Highgate Cemetery where his ashes would be scattered. The nurses looked utterly bemused by the whole thing.

  Grace came in a bit later and his eyes lit up. Grace always had the capacity to make Dad laugh, to say something unexpected, to distract him. He tried to kiss her head, looking confused as he realised the bubble was in the way. We all laughed.

  Grace and I went for the daily dinner run and he looked at us both as if for the last time, squeezing my hand with such love. He started: ‘I know I won’t be there for the big moments…’ We both instantly burst into tears. He knew how to get us, loved grand statements. He told us he would always be with us really. That he loved us so much. That this was our moment, that we were on the cusp, were ready to shine, to explode. He told us to
believe in ourselves, that we were both stars. He said his mum on her deathbed had told him to look after his dad but that he did not need to tell us to look after Mum. He knew we would.

  When we came back he was trying to type, struggling to lift his arms. We tried to prop him up with pillows but he would not let us help. He sat there for what seemed like hours but only got a few words down, telling me ‘I’m away with the typing, George.’ That was when I really broke down, hiding behind his bed, silently crying. I could not bear to see his body letting him down. Eventually he fell asleep in front of his computer.

  I could see Mum was shattered but would never leave on her own, so I said I would take her home and that Grace would stay. Grace was delighted to have some time alone with Dad, and had hated having to go into work.

  As we left, Dad was struggling with his phone. He could not type in the password and asked us to remove it. We tried but failed, accidently changing it in the process. We wrote out the new one for him in massive letters but he looked at us with disdain. The drugs were starting to have a big effect and he was getting a bit confused, but every time he felt we were even remotely patronising he would cut us down to size very quickly. He had lost a bit of clarity, but his mind was so strong and he was always very much present.

  I remember that night knowing things were getting worse, feeling that a deep sadness had opened like an abyss in my chest and would never close. But I also felt a profound sense of joy and warmth as I ran over every tiny memory from that day, basking in each.

  Saturday, 5 November

  We all go in very early. Dad asks how many days he has left, counting them down. He thinks the worst-case scenario is three. We break it to him that three was yesterday, now it is only two. We can see his disappointment and frustration as he realises it is one less than he thought. He wants more time.

  He waits until Mum is out of the room and tells me to sort out his papers, to make sure his book gets finished and to get Labour people to the funeral. He wants the church to be packed, and tells me I should get Margaret McDonagh on it.

  His sister, Jill, comes by and they spend some time alone together, saying goodbye. They have both been very independent spirits, following their own paths, but I know the closeness between them in his final months was one of his greatest comforts. She is a Church of England priest so is able to give him a religious blessing.

  Afterwards Grace sits helping him text, his coordination so bad that communication has become increasingly erratic. We catch him trying to send Ed Victor a text saying ‘These are the best of times, these are the worst of times’; I am not sure he even realises he is channelling Dickens. Alastair later describes a confused message from Peter Hyman asking why Dad has emailed him saying nothing but ‘3–5 days’.

  And then suddenly he becomes very focused and determined.

  He knows time is slipping away faster now and he has to take his opportunity. The big thing hanging over him is the book. He believes that the common narrative on death is wrong, that dying can be a time of profound growth and happiness. He is desperate to articulate this, to get his thoughts down on paper.

  He tries to type, gets nowhere, so begins to dictate to Mum. And it is torture. Mum is helping because it is so important to him but she hates every second of it, knowing he is doing himself so much damage. Grace notes his almost possessed look, eyes half-open and red, voice rasping. He speaks and speaks. Mum fills the pages. He has gone deep inside himself.

  I feel intolerable pain as I listen to him struggle to get his words out, his voice a low murmuring grumble.

  When it comes down to it, it is not enough for Dad just to have his family around him, though I know it means the world to him. The most important thing to him is his drive, his purpose, his desire to give meaning to the experience of dying. That is why the book means so much to him. And so he digs somewhere deep, beyond his body, for his final spark of energy and reserves to write his parting thoughts. He has been too sick for weeks to do this but somehow he knows it is now or never. He is facing death by fighting with all he has to find meaning in it.

  The doctor comes in worried about Dad’s numbers and tells him he has to stop talking, but Dad is determined.

  We have told only a handful of people so far, not wanting to force all his friends to live through this with us. But now I think there are some who have to know. I step out to call Pete, his oldest friend from university, who now lives in Boston, Massachusetts. When he answers he says: ‘Georgia, don’t say anything. I’m on the top of a ladder.’ He comes down and I tell him what is happening. I hear the shock in his voice. Like all of us, he had thought there would be more time.

  And still Dad talks. Finally he comes to the end and he is so relieved, looking for our praise. He keeps repeating the phrase ‘fought hard today’. We want him to calm down.

  Queens Park Rangers are about to kick off against Manchester City. I get the match up on Sky Sports. Dad and I have been QPR season-ticket holders since I was six and have travelled together around the country to watch them.

  He gets very excited – ‘Look, it’s Neil Warnock’ – and wants to know why the quality of the picture is so much better than when we watched games in Newcastle. Mum is slightly disapproving so I ask him if he would prefer some Gregorian chants. He looks at me as if I am insane.

  ‘Georgia, I’m watching the football.’

  He keeps trying to lift his arms above his head the way he would do at home. But they are so bloated now, four times their usual size from being attached to all these wires, he cannot quite get them above his bubble hat. It is so sweet, almost comical: such a familiar gesture in this medical world. QPR score an equaliser and his numbers go up.

  But he is getting more distressed and his breathing is getting worse, so I turn the game off to try to get him to rest. And so he does not see us lose.

  Alastair sends Dad the most beautiful letter. So we read it to him, all in floods of tears, and he, calm as anything, jabs at the laptop screen and says ‘Funeral, funeral.’

  He tells us his breathing is getting more difficult now and the nurse ups his sedatives. He suddenly announces, ‘I’m done,’ and we all get a bit panicked. But then he says, ‘I’m done. I’ve finished the book.’

  He makes a gasping sound like he is trying to catch the air. Grace and Mum stand on one side hugging each other, Grace’s eyes big and bright from crying, Mum looking at Dad with such tenderness.

  He slips into a dazed sleep, then wakes up a bit confused and says, ‘Breathing hard now, breathing a problem, I want to crash out.’ He is not petrified like before. He has steadied himself. He is ready. He looks around and cannot see me on his other side.

  ‘Where’s Georgia?’

  ‘Here, Dad,’ I say.

  He grabs my hand so tightly and tells us to sort out ‘The Glory of the Ride’, meaning this book. He says ‘Goodnight, love you,’ to each of us in turn. He falls into a light sleep, wakes up, and does the whole thing again.

  He is very insistent that it is time for us to go to bed, that we need to get a taxi home. He calls out to the nurse on duty, ‘Ebony, put me to bed now.’ We say, ‘Dad, you are in bed,’ but he barely hears us.

  His last words are: ‘I’m going to crash out now, I’m done.’

  And he falls into a deep sleep.

  Is he scared? How much does he know? I cannot know for sure, but I remember Alastair, years ago at a Labour Party event, reading a quote from an American football coach: ‘I firmly believe that any man’s finest hour, the greatest fulfilment of all that he holds dear, is that moment when he has worked his heart out in a good cause and lies exhausted on the field of battle – victorious.’ And I feel that is where Dad is at this moment.

  He has fought as hard as he can. He has the people he loves around him and he is ready to fall into his dreams.

  Later, Mum, tears rolling down her face, reads to us Dylan Thomas’s poem, ‘Do not go gentle into that good night… rage, rage against the dying of the lig
ht.’ In the end he is not going gently. He is going the way he has lived, with determination, purpose and resolve, fighting to make every second count.

  The nurse tells us that it would be better if we stayed the night, so when it is clear he is fast asleep we move to the little relatives’ room next door. The nurses promise to call if anything happens.

  Grace and I run home to grab some spare clothes and wash stuff. Before I go I tell Mum it is time to let people know what is happening. She composes a beautiful email and we send it to an old mailing list, not really sure who is or is not on it.

  Sunday, 6 November

  We rest on an improvised construction of sofa beds and pillows. I barely sleep, waking at around four in the morning. I must have been making a lot of noise because Mum very drily suggests that I go and sit with Dad.

  So I do, sitting with him and the nurse, listening to Bob Marley gently playing in the background. The nurse has taken a lot of care to get him comfortable, tidy up his tubes. He looks well but firmly asleep. She says she stopped giving him sedatives at about midnight.

  Grace and Mum come through an hour later and we all sit around him, not really sure why he is not waking up. His breathing seems strong and his numbers are fine.

  Eventually a young doctor comes by on his rounds. He asks us if Dad was talking a lot yesterday. And we say yes, all day. The doctor describes how the effort of speaking emitted so much carbon dioxide into his blood that Dad created a natural sedative, gassing himself into unconsciousness. ‘Like if you gas yourself in a car?’ Mum asks, incredulous.

  ‘Exactly,’ he says.

  The doctor tells us it is extremely unlikely that Dad will wake up now, but he cannot say how long he will stay like this. It could be hours, it could be days. It is not a shock to us and in a way there is a real beauty to it. Through his relentless search for purpose he has given himself the peaceful, natural death he craves. He is, in the end, the master of his own destiny.