by Philip Gould
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 c
lear 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:
PG still with us. They had stabilised him and he said I should go in later. He was in bed ten on the intensive care unit. Gail and the girls there. A nice nurse called James who was a big Norwich fan. PG had his head inside a plastic bubble which was helping him to breathe. He had tubes galore into one hand and arm. Yet he was so much better than I had expected. Chatty, funny, and apart from when he moved, and lost his breath, generally ok. I said never do that to me again. What? Make me feel you’re dead when you’re not. But when the girls went to get a cup of tea, he said he was still looking at days not weeks. I stayed for an hour or so and it was at times almost as though he wasn’t really dying. Like any other chat. But not for the first time when I left I wondered if it was the last time I would see him. I did a bit of work when I got home, blogged again on Greece, did a bit of a bike session but I was feeling very down and anxious about him. I had to go out later and host the Portland pub quiz which was fine. Lifted me out of the gloom but I was straight back in on the way home.
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 fa
ced 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:
