When I Die: Lessons from the Death Zone

Four Days Left to Change the World ^{Georgia Gould}

Dad went into the Marsden for the last time on the Tuesday. He was not rushed in; it was his routine chemotherapy appointment.

We had been preparing for a long period of steady decline, of hospices, of slowing down and goodbyes. We had lived with cancer for so long that we were used to his periods of gauntness and sickness, used to seeing his body wasted and thin, his skin dry and peeling. These things were not necessarily signs of impending death but reactions to the treatment – the scars of cancer.

We knew, of course, his prognosis. His cancer was terminal. We were two months into the three that Professor Cunningham had predicted for him. Death had become something we lived with: making group tours of Highgate Cemetery, poring over funeral plans and strategising for posthumous publication. But, at least to me, death still always felt one step removed. Dad was always there, an active, engaged participant in the discussion – very much alive.

Even Dad, who relentlessly faced up to the truth of his condition, had moments when reality escaped him. I remember him saying that he had been sitting admiring his new shoes, thinking they looked smart enough for the funeral – before catching himself and remembering he would not actually be attending the funeral, at least not in a way that he need worry about shoes. He would joke that he had made such a fuss of dying that he needed a contingency plan if he did not die when he had predicted.

When someone is so full of life, humour, wisdom, so much themselves, it is easy not to see their body wasting away, easy to forget how stark the difference is between life and death. There is a big space between knowledge and acceptance.

Dad was determinedly trying to prepare my sister and me for his death. He knew better than us how highly we all had to value the time left. He invested everything he could in giving us the tools we would need for life, answering questions we did not even know we would have for him.

On the Thursday before he went into hospital he had organised a trip to Brookwood, the place where he grew up. This still stands out for me as a perfect day.

I had been up all night finishing a report. My sister, Grace, was stressed about her work. But Dad was insistent there would not be another chance for us to go together. And so we went. Dad had organised a car as Mum was not around and she is still the only member of the family who can drive. Dad was struggling with nausea and we had to stop and go back twice for more anti-sickness medication. But he took all the drugs he had and somehow he settled.

When we left it was the kind of beautiful, bright morning that we had no right to expect just as November was about to start. First, we went to visit his parents’ grave in Woking. I had been there with him many times before. He had always told us that his parents were an ever-present part of his life.

The cemetery was pristinely kept. The autumnal colours sparkled in the sun. The place had an almost magical feel, and painted a peaceful picture of death. Dad was able to pay there and then to extend his parents’ plot for the next twenty-five years and this seemed to take a weight off his mind – he had looked after them for one final time.

The ease with which we discussed Dad’s condition shocked the receptionist at the crematorium, I remember. I had once raised the idea of scattering our childhood cat’s ashes near Dad’s – the idea outraged my sister and amused Dad, so I quickly backtracked. Characteristically, he took the chance to wind us up, asking the receptionist whether they let people scatter their pets’ ashes in the garden. No, she said. ‘It’s just that I’m on my way out,’ he replied, ‘and my daughter wants to mix my ashes with those of her cat.’ She very coolly told us there was a waiting room round the back that we could sit in – the very clear subtext being, can I get this insane family away from me? I will never forget sitting in that funny little room, all three of us crying with laughter.

He kept repeating how happy he was. He said afterwards to me that he had a strong sense that day of how much energy and power we had and that he had felt confident that this was our time and that we would be all right without him. But I did not feel that then. I was just trying to ask all the questions I could, to drink in the time.

We drove along the street he grew up on and he told us about how he started the branch Labour party and recruited so few people his father had joined just to beef up the numbers. He told us about how he would knock on doors along these suburban streets and feel frustrated that these people’s hopes and aspirations were being ignored by the party he loved.

He told us about how he found a bigger world in literature and how something inside him had pushed him to leave Woking at the age of sixteen. He was anxious for us to see and understand every detail, that there should be nothing we did not understand.

He showed us the hills he used to struggle up doing his paper round and the construction site he had worked at during the summer holidays. He took us to the woods he used to walk through alone and the rivers he would fish and where he found peace in his own thoughts.

By now the weather had changed. It was pouring with rain by the time we got to Knaphill School, the primary where his dad had been the head teacher, but he insisted on getting out and showing us around, despite our warnings about what Mum would say.

He told us how his dad really cared about the ordinary kids who went there and fought to build them a swimming pool. He reminded us how he had himself struggled at school, how he had been so petrified at his eleven-plus he could hardly write and had ended up at the secondary modern.

We took many photos, printing memories as we went. We had lunch at a pub, where he managed a couple of spoonfuls of soup but insisted we all had three courses.

I can still see him there, beaming at us, happy in the moment.

That was Thursday. By the following Monday, his breathing had become a problem. Breathlessness was a new symptom for him so it had all of us worried, especially Mum. She always had a sense of when things were really bad. I think so much of his pain and his fear, so many of the demons, became apparent at night.

He had a routine chemotherapy appointment on Tuesday and Mum was so worried she covertly called the hospital, asking for Dad to have some tests as soon as he arrived. They were both stressed and tense that morning and I had a sense of foreboding that whole day.

I was in a meeting when I got a text from Mum at about four saying the doctors thought Dad had a ‘bit of pneumonia but was doing OK’. Having learnt with my parents always to add at least 20 per cent to any bad news, I jumped straight into a cab.

When I got to the hospital the atmosphere was tense. I could tell that both my parents were scared but were trying to be strong for each other. Dad was joking away as ever, getting me to massage his neck, interested in my day. It felt like the moment of calm before a storm, waiting for what was going to hit us.

And then very quickly the storm was upon us.

A doctor came in saying she was finishing up before her shift ended and had just come to give us the results of the scan Dad had undergone. He did have an infection, she said, it was on the lungs and was very far advanced. But they were trying to fight it.

There was something in the tone of her voice and the way she would not quite meet our eyes that betrayed the seriousness of the situation. I remember struggling to hold it together.

Dad asked very calmly: ‘Is this life-threatening?’

‘Yes.’

‘Could it be tonight?’

‘Yes.’

And suddenly the ground disappeared from beneath our feet.

We had been discussing that Sunday whether Dad would be with us at Christmas and had been making plans for the next few weeks. None of us had thought it could be so quick.

Least of all Dad. There was so much he still wanted to do. I could almost see him running through the list in his mind – the people he wanted to see, the book he planned to finish. His breathing was getting faster and faster as the panic began to set in.

The doctor told us later that Dad’s shortness of breath when he walked into his appointment that morning would have hospitalised most people and it was starting to hit him now. Dad told Mum to go and call Professor Cunningham. His voice was strained and I remember frantically trying to find the number, my brain suddenly no longer really connected to my body.

Professor Cunningham told Mum he had seen the scan and that the situation was bad. Get the girls in, he advised, it could be tonight. When Mum left the room Dad said he could feel that he was dying, that he did not have long left.

I could see him trying to control his panic, trying to keep calm, but he could not quite get a hold on himself. He had said to all of us, and especially to Mum, that his greatest fear of dying from oesophageal cancer was not being able to breathe. He had always had a fear of tight spaces, of drowning – he hated the idea of gasping for breath. He associated breathlessness with the rattle of his father’s chest on his deathbed. And at that awful moment it seemed he might get the death he feared rather than the one he wanted.

Dr Craig Carr, the head of the Marsden’s intensive care unit, came to talk to us. He was one of those doctors who exudes reassurance and calm and we began to refer to him privately as Smiling Buddha. He repeated that the situation was serious and the infection was very far advanced.

He gave us three options. The first was to do nothing, which would almost certainly mean Dad would not last the night. The second was to support Dad’s breathing through an oxygen helmet while they tried to control the infection. Finally, they could make an intervention and put him on a life-support machine, but the chances of him ever coming out of it were very slim.

Dad was slightly calmer now, given some control of his own destiny. He was very clear that he did not want the third option. He did want to live, but not at any cost. He said to Dr Carr that he was going to die anyway and he did not want it to be in terrible pain and discomfort.

Dr Carr left saying he would prepare intensive care and someone would be up to transport Dad shortly. Mum had texted my sister: Get here, now. Grace was already on her way and arrived shortly afterwards, face strained, not wanting to ask too many questions. She later told me she could feel the tension and fear in the room, that it was oppressive.

Dad asked to have a moment alone with each of us. Grace said she kept telling him not to be scared. He told her he was not, but his eyes betrayed him. I told him that he had done enough, written enough; we could take it from here. I tried to let him know how much I loved him but could not find the right words.

I did not want it to be like this. I was not ready. He was not ready. I had so much to say to him, I wanted so much to give voice to the overwhelming strength of my love for him. I wanted to leave nothing unsaid. But this was all too rushed, too brief, and it left me feeling desperate for just a little more time.

The team came up to wheel him down and we took the stairs to wait in the little family room. Grace made us all hot chocolate. None of us said very much.

The nurse eventually called us in to see him. He was lying on a bed in the middle of a small room underneath a canopy of medical equipment. They had put the helmet on him, a clear bag made from thick plastic. It was hooked up to an oxygen machine that was building pressure around his head to aid his breathing.

He looked like something from a comic book. We all laughed and it broke some of the tension. Somehow it seemed appropriate that Dad, who was always so irreverent and could bring humour to any situation, would end up within this rather comical medical invention. There was a little flap that could be opened to give him water or wipe his face, but the helmet stayed on the whole time.

The room was one of a row of private rooms reserved for patients with infections or at risk of an infection. It was a very plain, clinical space – a sink, a couple of chairs, two small windows at the back. Dad faced away from these. There were two screens monitoring his vital signs, one above his bed and one, more detailed, that the nurse watched continuously. So much about this room was reassuring: the constant presence of a nurse, the tubes and wires connecting him to the drugs he needed.

After seeing Dad sitting scared and breathless with no support, intensive care represented security. His breathing settled and about midnight Dr Carr came in and said Dad would definitely live through the night. And he was himself again; as his breathing calmed, so did he.

Dad was now very keen that Mum should get some sleep. She had been up all night with him for the last few days. But I felt he did not want to be on his own, so I said I would stay at the hospital. I could tell Mum and Grace did not want to leave but I pushed them out, saying I would sleep in and they could come first thing.

So I sat with Dad. We looked up the latest polls on the RealClearPolitics website, and debated the fight for the Republican nomination as we had done a million times before.

I put on an episode of CSI, the programme he often watched late at night to help shut out the pain. The rest of us really hated it. I have the clearest memory of him getting me to adjust the television, worried that I could not see it properly. Grace later said he did the same with her when she stayed. That little gesture was so typical – despite his pain and discomfort, everything he had been through, it still really mattered to him that I should be able to see the programme properly.

Eventually, in the early hours, he said he wanted to try to sleep. I booked a taxi and cried the whole way home.

Wednesday, 2 November

Mum wanted a bit of time alone with Dad to talk things through so I slept for a couple of hours, until about seven. I woke up with a flashback to the panic of the night before, and called the hospital immediately to check Dad was OK. I was reassured to hear from the nurse that he was feeling fine. Grace and I went in for about eight, picking up breakfast – porridge and coffee – for Mum on the way.

We brought with us some things Dad wanted: his books on dying, his cancer articles, his laptop. Thus began an endless stream of requests from him, made and then instantly forgotten, so the room was full of his jumbled possessions. And somehow this sterile hospital environment became our space. We came and went as we pleased, no one ever asked us to leave and there were no visiting hours. The medical team made us feel part of the hospital. It is strange how quickly you can adjust to a new way of being. This little room became our family home, the new rituals and routines providing a strange sense of comfort and normality.

The medical situation too had become more stable. Dr Carr said Dad would definitely be with us for the next three to five days and we would know by the weekend if the infection was going to turn. If it did, it could still be weeks. Dad asked: ‘Can you guarantee me I’ll be here in a week?’ Dr Carr said no, but ‘I can guarantee you that you’ll be looked after like a member of my own family.’ And he was.

So there was hope. But, as Mum said to me afterwards, in another way there was no hope. We always knew the chances were slim and even if he did recover, this would happen again in a few weeks. I am not sure any of us, Dad least of all, believed that he would leave intensive care again.

Alastair Campbell came in to see us on Wednesday morning. He had been on the phone to Mum living through the night with us. And so it was a bit of a shock for him to see Dad sitting up, grinning and joking away. We found it hard to describe how real and close we had been the night before.

It was surreal sitting there with him, chatting about France, football, Alastair’s boys, politics. Dad said to Alastair, ‘You know, you’ve lived your whole life wanting to live in an invisible bubble, now I’m in a real one.’ Alastair was running a quiz that night and tested out the questions on us. James, the day nurse, joined in. We could have been in our sitting room at home.

Alastair wrote in his diary after he left:

After he left we all sat round chatting, laughing and planning. We had never been closer than we were that day. Dad kept saying, ‘We have a great family, all here together.’ He would look around at us all, grinning. He loved it when we were all up, when we were close.

And Mum was at the heart of this. I always knew she was strong – as Dad used to say, she was a force of nature. But somehow she rose to that moment. She had endless love and comfort for Grace and me and she was Dad’s pillar of strength. As his body slowly started to fail she became his extra limbs. He was never really calm unless she was in the room. He looked to her for help with the doctors, trusted her to be his voice when he did not have one. It was like the strength of her love suddenly gave her this extra power, it was extraordinary. And at the same time she let herself lean on Grace and me more than she ever had done before. We just became a total team.

Dad seemed to me to be working on two planes. On the deeper internal one, he was coming to terms with the new situation. But, more immediately, he was also dealing with the limits of his body and a mind slightly befuddled by drugs. He was often a little high and some of his lines kept us in hysterics. At one point on Wednesday he looked over and said, ‘Look, there’s the new unit over there – the three Gs. My little Gracie, the fighter, is the left back, Georgia is Bobby Moore, the heart and soul of the team, and Mum is Alex Ferguson.’

During the afternoon Grace and I popped out to give my parents some time together. We had some sushi, feeling very strange and exposed outside the hospital. We bought Dad a little lion and a card saying ‘Daddy of all Daddies’, writing one line each. We found him a Dictaphone, to add to the pile of possessions he never used.

I remember announcing in the evening that this was the happiest day of my life and my family all looked at me like I had lost the plot. But it was true.

We had returned from that point of absolute haunting fear. Dad had been saying for a while how when you are given a definite deadline, time loses its meaning. When you are not planning for tomorrow, time becomes circular and all you have is the moment. So the moment goes on for ever.

When he said it I remember thinking: time does not stand still for the rest of us, Dad – we have to imagine a future without you. I thought about the election campaigns he would miss, the boyfriends he would never meet, the children he would not know. But somehow that moment on Tuesday night, when we all faced death together, had changed everything.

Those last few days were the longest of my life. Every conversation, every smile took on a new significance. I felt the most pain and the most joy I have ever felt. And sitting there on Wednesday I felt so incredibly lucky to have those few days, and I knew Dad did too. He looked at the time he had left, recalculated, and thought, yeah, that is just enough. Just enough time to say goodbye, to finish my book, to get things right.

He was a strategist; he wanted to have some control over his destiny, to choose his death. He drank in knowledge about his condition. He had no interest in being distracted from what was happening or hiding in escapism. He was constantly aware, asking questions, analysing and re-analysing his situation. And in his final days he watched his numbers constantly, as if his charts were an exit poll – what are my numbers today?

There is no doubt that he did not want to die. That he had so much more he wanted to give, to do. He loved life so fully and deeply. When I chose the poem I would read at his funeral, ‘Because I have loved life, I shall have no sorrow to die’ (‘A Song of Living’ by Amelia Josephine Burr), it summed him up for me.

This was not the peaceful end of someone who thought they had given everything they had to give. He appreciated the intensity of the Death Zone, as he called it, because he was someone who loved life. He found a way to reconcile the two, empowering himself in facing death by making the life he had left count.

He looked at us and said:

‘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 light.’ 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.

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.