When I Die: Lessons from the Death Zone

The Unfinished Life

We arrived at the hospital and met Sarah, Mike’s deputy consultant, on her way out. She was warm enough but seemed distant, and I felt an intimation that all might not be well. We sat in the waiting room and the meeting was an hour late in starting, something else that did not feel right.

Mike came in with Claire, a specialist nurse I had become close to. He started with a rather abstract discussion of my general condition, how I felt, how my feeding was going, what my symptoms were. This was not going well: good news always comes early in these meetings, it’s not left to the end. And he was low, his normal sparkle missing.

Then he said, ‘Let’s move on to the histology.’ He said the margins were good although tight, the tumour had been removed, but the cancer had been more prevalent than expected, had taken hold more deeply. Seven of the twenty-three lymph nodes extracted had been contaminated with cancer.

Seven.

I felt slightly sick. I knew this was very, very bad.

He said there was a very high chance that the cancer would come back. I asked what my chances were: still 25 per cent? No, he said, more like 20 per cent, but he looked to the ground and rather mumbled as he spoke, obviously not really believing it. If I took chemo-radiotherapy then that might add another 10 to 15 per cent, but again he did not say this with great conviction.

I turned and looked him straight in the eye. ‘Is it going to come back?’ I asked. ‘Yes,’ he said, ‘it is likely that it will.’

By now the mood in the room was becoming dark. Mike was low, Claire subdued and Gail shell-shocked. I did my best to lift spirits, but failed. We left.

‘That didn’t go so well,’ I said to Gail. ‘No, not perfectly,’ she said. We walked on, knowing the future had changed once more.

I told the kids honestly that the prognosis was not good.

A few days later Gail left. Georgia came up and we went to a discharge meeting with Mike. This time our mood had lifted and we were pretty buoyant. Mike told Georgia the unvarnished truth about my situation, and she took it well, seduced in part by the positivity of our shared mood.

A couple of days afterwards Georgia and I went to a coffee morning that Mike and Claire organise each year. We expected to find twenty people sitting around chatting in a side room somewhere. In fact, eight hundred people turned up, completely filling the Newcastle Civic Centre.

Eight hundred people whose lives had been touched by Mike and his team.

The longest surviving patient had had his operation performed twenty years ago, just a few years after the unit started. It was as if Mike could see the whole of his life’s work in front of him. If only politics could be so unambiguously virtuous.

We sat at a table with a group of cancer survivors from South Shields. They were warm and direct, tolerating no nonsense. They immediately took me in hand. We talked about what cancer meant to them. And it was, in essence, what it had meant to me: finding a way to deal with the fears of the night; the importance of community and collective support; the need to be positive and optimistic. Above all was the recognition that cancer is cruel, but it also has the power to change people’s lives. It had obviously changed theirs.

They had set up an oesophageal cancer self-help group in South Shields that met in a pub once a week, and had an outreach programme for other cancer survivors. They invited me to visit, and I said one day I hope I will. Although miles apart geographically, we shared the same perceptions of cancer and how to fight it. I felt part of a shared journey.

We spent Christmas out of London in the snow. Just us and the kids. There was no hiding here, we all knew the situation. The family was under strain but we were close.

Georgia had taken the original diagnosis hard, and tended not to want to discuss my cancer with me. She had just wanted to be happy and positive and helpful, and seemed to feel that any sign of sadness would betray her anxiety. The problem was too deep to discuss. But Newcastle had released her. Now she accepted cancer and the reality of my situation, and could openly face and talk about it.

Grace was different – only too happy to talk about the cancer, wanting facts not flim-flam: she wanted data, actual percentages, real lengths of time. And, consummate at black humour, she could joke about it. She talked about it all openly from the start. I think, though, that she was set back by the recurrence; it was not something she had thought would happen.

I hoped and believed that my relationship with my children was deepening all the time. We implicitly decided to bring the future forward, to compress ten years or so into one.

The kids sucked me dry. Georgia wanted to know all about the way I thought. How did I develop a concept? What were my values? Why did I believe what I believed? Grace wanted hard, usable, practical advice. At one stage she asked me to write down every likely eventuality that might befall her, and supply a satisfactory answer. Facing the possibility of my departure, she wanted a handbook for life.

With the children all this was in a way easier than it might have been. It is in the nature of things that children outlive their parents. There is a point of natural parting.

For Gail it was different. She did not want intensity, or purpose, or accelerated living, she wanted quiet and normality – not the future brought forward but the present extended. She had always envisaged a future free from work where we would just potter around, grow old as companions.

We had known each other so long that we had created a kind of shared world. After her husband died, Katharine Whitehorn wrote: ‘Marriage is the water in which you swim, the land you live in, the habits, the assumptions you share.’ Pottering around in later life seems the easiest thing to achieve. But now it was something I simply could not guarantee. This was the hardest thing to bear, and it does not get much easier.

In London we went to see David Cunningham. Gail had with her Mike’s discharge report, which she had been discreetly keeping from me. I grabbed it and read it, seeing his crucial summation: ‘Philip Gould has a very poor prognosis… The patient is aware he has only a slim chance of a cure.’ Hearing this is one thing, reading it quite another. I felt chilled.

We went in to see David, who was as always positive but never dishonest. He said the next step would be chemo-radiation, which would last six weeks and would involve radiation on a daily basis except weekends. Later we would explore genetic and DNA diagnosis, to see if some kind of experimental cure might be possible in the event of recurrence.

I felt hope but I had been winded.

I was keen to get on with the radiotherapy, but by now eating had become very difficult for me again and my swallowing pains were worsening. David sent me off to a consultant called Jervoise Andreyev, who deals particularly with the symptoms of radiotherapy linked to surgery. He was brilliant, a typical Marsden hidden gem. He prescribed a whole new world of drugs and within days my symptoms were becoming manageable. But Mike phoned to say that I simply would not get through the treatment without a feeding tube, because I would not be able to eat in the middle of it.

So the next day I returned to Newcastle to have a feeding tube fitted and was reunited with the team, who seemed genuinely pleased to see me. After the surgery Mike came down and we talked about the harsh reality of my prognosis. Mike believes that it is right to tell the unvarnished truth and to tell the whole family at the same time; it stops a sense of grievance and unfairness festering.

I said there was another, deeper reason for telling the whole family the truth. It is that with the knowledge of your likely early death, you can reconfigure time, use it on your own terms. In truth, having an idea of the likely timescale of your life is a privilege not available to many. It is so much better than a sudden death, with no time to prepare.

I did not like radiotherapy, much to the chagrin of my consultant, Diana Tait. She kept telling me that this was the Year of Radiotherapy: could I not enjoy it a little more? She was terrific and so were her staff, but I found radiotherapy to be among the few things in cancer that lowered my mood.

The very first time I went into the radiotherapy unit I sensed a gloom among the patients waiting to be treated, a mood quite different in character from that of patients waiting for surgery and chemotherapy. This is not because radiotherapy is particularly unpleasant or painful. It is not. It just has a kind of dulling effect, and even as I write this I feel the ghosts of the experience returning.

The treatment itself is straightforward. You just lie under a huge rotating machine with a name like a battleship: mine was called Joford. The machine chugs round, blasting its rays from four different angles. There is no pain, in fact no sensation at all except the buzzing of the machine while the X-rays are going through. The only discomfort is lying for a few minutes at full stretch, unable to move, with your arms above your head. I played music on an iPod and it passed in a trice. But no one enjoys it much, and some seem to struggle.

One day I saw a man standing uneasily, unable to sit because of the pain. Another was being sick in the bathroom. A third was sobbing quietly. I think this was probably a reflection of their state of illness rather than the treatment, but it took a while to grow used to it.

For many radiotherapy is much less traumatic than this, and it may just have been the patient cohort I was in. But the patients never lost their resolve. They kept going, day after day, getting through it, though some were obviously approaching their last stages.

The point of the radiotherapy was to sterilise the immediate region of surgery and the wider area around it in which the contaminated lymph nodes were found. It was entirely about stopping localised recurrence. The problem was that as a result of the surgery I had undergone, the remaining shreds of my oesophagus and stomach were clustered in an area very close to my heart and lungs, so it was tricky to find a safe path. The full blast of the rays went right through the surgery wound.

Even after day one, I could feel some pain in the wound and it just grew from there. I developed a pretty horrible cough, but that passed and the middle weeks proved not to be too bad. By the last couple of weeks, though, the pain was acute and accompanied by persistent vomiting – not of food, as I was not eating, but of phlegm caused by inflammation. This process of pain and vomiting went on for days.

So my life became the familiar business of grinding on. Four times a day I would take an array of pills, including the crucial chemotherapy medications, and each session of pill-taking would take as long as an hour. At times like this cancer becomes a moment-by-moment endurance test, with nothing for it but to tough things out and seek distraction.

And throughout all this was the saga of the feeding tube. It had been inserted in my stomach, or rather my small intestine, and to feed I had to attach it each night to a pump which would administer a litre and a half of a sweet gooey liquid that purported to be food.

Gail hated this. She hated the noise of the pump and the smell of the liquid and the fact that our private space had become more like a hospital room than a bedroom. Above all, she hated the tube that dangled from my stomach like a plastic eel and was my lifeline. She was certain that I would pull it out, convinced that when this happened I would no longer be able to eat.

Of course, I did pull it out – twice in fact – but a terrific surgeon at UCH managed to get it back in on both occasions. It also exploded once, flooding my T-shirt, my jeans and the floor beneath me with foul-smelling bile. There was an embarrassed silence in the kitchen as the puddle beneath me gradually grew. This might have been a low point. But I just accepted it and moved on.

Cancer does make you stronger.

The radiotherapy finished and I saw David Cunningham for a post-treatment consultation. Positive as always, he said that things had gone as well as they could have on the long journey that had begun with that first scrap of paper mapping out my treatment seven months before. Everything that had been planned had happened.

We moved to the future and the vast panoply of tests they were now carrying out: DNA, genetics, stem cell, and on and on. These were not to prevent recurrence, but to deal with recurrence if it happened.

The next scan was due in early June, which seemed an eternity away. I unwound, relaxed and did as little as possible, determined this time to do things differently.

The day of the scan arrived. Gail and I were both really nervous, anxiety creeping up on us, growing by the day. Gail called after I had the scan, desperate to know what the findings were. I said I had no idea, but at that moment Kaz called saying all was good. I felt that despite all expectations I had a chance of life. At least for the next six months, until the next scan, we could be free.

I called Gail and she was virtually gasping for air, so surprised that finally we had some good news, so frightened that once again good news would turn to bad. But for now, it was OK.

We went to see David Cunningham, who said the scan was excellent, that this was a significant step forward and that my prognosis had improved a little. Of course the odds were still against me, but I did not care much about that. I had a chance, and a chance was all I needed. The door which had seemed to be closed had opened a little. Life, short or long, lay ahead of me once more.