When I Die: Lessons from the Death Zone

A Very Small Boat

The very day after my chemo regimen finished, Gail and I set off by Eurostar from St Pancras railway station – we had been told it would be unwise for me to fly – on a trip that would take us eventually to Venice. We changed trains in Paris and then shared a small and rattly carriage with a couple of tiny bunks that took us through the night. We woke as the train pulled into Venice; the sun was shining, the treatment for my oesophageal cancer was over and I was starting a new life.

This is the best time, but it is also in some ways the worst. One of the things that makes an initial diagnosis bearable is, strangely, the speed with which cancer patients go on to treatment, creating immediately a sense of struggle, purpose and endpoint. The moment the treatment ends, that endpoint vanishes, the supporting structure disappears. You are pretty much on your own.

I remember exactly my conflicting feelings: joy that the chemotherapy and surgery were over but also fear of what the future might hold. I felt I was in a very small boat, floating in a very large sea.

Of course there is help available to prepare you for this – the Marsden has a small unit dedicated to it – but you still feel very alone.

At the core of my fear was the possibility that the disease would recur. With my cancer the risk of recurrence is not evenly distributed but is heavily concentrated in the first two years, peaking at about a year. If you can get to two years you should make five; if you can make five you are considered cured.

I have lost count of the number of times doctors have drawn this graphically for me, shown me a huge peak of risk in the coming year or so, tapering off with remarkable speed to safety after two years. So the goal is to reach the end of those two years without recurrence. It does not sound long. But it feels like an eternity.

Just before the treatment ended I saw David Cunningham and we discussed the way forward. Basically, he told me, I could walk out of the door and restart my life, but I would have to have regular CT scans to assess my progress and to see if the cancer had returned. The first scan would be in September, the next in December and then they would be done at regular six-monthly intervals.

The scans are not troubling in themselves. What is distressing is the delivery of the test results. It is like receiving an opinion poll on the future of your life.

There is no easy way to do it. Gail and I would inevitably arrive early and wait to see David, struggling to hide our anxiety. Absolutely the worst part is the moment of entry into the waiting room. You greet the people there, at the same time examining their faces and body language for hints of their likely prognosis. It all happens so fast, and with a faint sense of unreality, as though in a dream.

If the news is good you will usually be told instantly that all is well. Conversely if doctors have bad news for you, they invariably start with some earnest chatter about your condition, move on to some spurious evidence of something that has gone well, then announce a huge ‘but’ that swallows the room. Gail learnt to hate nothing so much as the word ‘but’.

The first test in September went well, but that was expected. The second, in December, was also good and I started to relax. David said the next scan was important, and before the next meeting in June we hovered around the door to his office in a state of something approaching panic. But this test, too, was good.

This took us to December 2009 – effectively the two-year test, and self-evidently a crucial scan, the gateway to the real possibility of cure. This time I am afraid I cheated, hovering around David’s office door again and hearing him say that Philip’s tests ‘all look good’.

I did not tell Gail, so fearful had I become of imparting good news that might not be confirmed. We went in and this time David was seriously optimistic, it was as though he had won the lottery. He did not say that I was cured – he did not even imply it – but it was clear he felt I was really on my way.

‘You need not come in again for another year,’ he said, which was clearly a huge vote of confidence. I insisted on the normal six months, because by then I was both cautious and superstitious. But as Gail and I walked into the cold midwinter evening we felt we had done it. We had reached the two-year mark clear of cancer and now statistics were on my side. It was going to be OK.

And so I got on with my life. Almost immediately I flew to the United States for meetings, probably far too quickly for my own good. I had a wonderful holiday in Jamaica at Christmas, healed by the sun, the heat and the breeze. I pitched into work, going to Freud’s most days and quietly keeping going with my politics. I was determined to get back on track.

I did change my routine, if only partially. I took exercise every morning, and meditated every day. I moved from being inchoately spiritual to more emphatically religious. I was confirmed into the Church of England, after a couple of months of classes, and All Saints Margaret Street became a place of sanctuary for me. I even took a course in philosophy at Birkbeck, University of London.

But I continued to work very hard, travelling to the United States on many occasions. My work was satisfying, and much of it fed off my experience of cancer, but by the end of the year I knew I was slipping out of balance.

Our twenty-fifth wedding anniversary would be in 2010 and so we spent Christmas in southern Kerala, India, where we had taken our honeymoon. I meditated twice a day with a local guru, and went often to local, unspoiled ashrams. I began to calm down. It was not to last. The general election was coming up and I was determined to contribute to it. I felt this was the time for people like me to stand up and be counted.

Gail was growing worried. She hated my involvement in politics, believing that it had been the root cause of my cancer. She began to see in me again the lack of energy and the torpor she associated with the original diagnosis. She wrote me a note begging me to slow down, saying, ‘It is so heart-rending to see you destroy yourself like this. Nothing is worth that, nothing. At the centre of it all is politics, which is such a destructive force. It nearly killed you once, please don’t let it kill you again.’

Gail had almost a sixth sense about me and my illness, always knowing when something was wrong. She had been right about everything connected to my cancer. And she was not alone. At around the same time, Grace texted me a very similar message: ‘STOP. You are being an idiot. You need to chill out and rest. You owe it to Mum who did so much for you when you were ill. It’s not fair to let her stress now. You have a perfect excuse not to be involved in this politics stuff. You just don’t have the stomach for it any more. (Yes I am that funny!)’

I was clearly doing something wrong.

For our actual twenty-fifth wedding anniversary we went to Jordan, and it was wonderful. But even while there I was dictating scripts for election broadcasts back to the campaign headquarters, something I kept quiet about when Gail was near.

When we returned home I tried to work on the campaign in a way that was effective while also being protective of my health. That was hard, because I love politics so much. I was determined not to let Labour down, but in truth I was getting tired, and my contribution was symbolic as much as practical.

Halfway through the election I flew to the United States to make a speech, and got trapped there by the cloud of volcanic dust which grounded planes across the world for a few days. To be stuck on the other side of the Atlantic was frustrating, even humiliating – but it forced me to rest and begin to reassess. I saw it as a sign that I had to change. But it was a little late in the day.

I got home eventually and the election came and went. Afterwards, though, I could see that I was losing weight and realised that eating was becoming unsustainably difficult. I phoned Kaz Mochlinski, a medical oncologist at the Marsden specialising in gastro-intestinal cancers, and a great supporter of mine. He immediately brought me in for tests.

I had a CT scan. It appeared to be clear and I relaxed. But when I went in to see David Cunningham he was clearly not comfortable. He said that notionally the scan was good, and that the radiologist had signed it off as free of cancer, but his face displayed concern. He sat there for a long while, staring at a split screen: on one side the image showed my oesophagus from the scan in June, the other the scan I had just had; he flipped from one image to another. He said there was no evidence of cancer but I should have more tests.

I had a PET scan and then another endoscopy from a Dr Benson, who was perky and confident, saying just before he put me under that he was pretty sure it was not cancer.

When I came round everything had changed.

There is something there, Dr Benson said, but he could not be sure it was a tumour. It was pretty clear, though, that he thought the cancer had returned. He had taken a biopsy, which would decide it one way or another.

A couple of days later, on 9 June, Kaz called and said that the biopsy had shown evidence of cancer cells. He was optimistic as always and said it could be fixed, perhaps by very early surgery, but I knew I had crossed some kind of line, that I had moved to another, more dangerous place.

I accepted this with the kind of calmness I often feel when getting bad news: I hear it but I don’t, and I am always looking for a way of turning negative into positive. But this time it was harder. I was not depressed, or in despair, or even deflated. Just shocked.

David Cunningham phoned and was inspirational. He said he was so sorry, he was totally convinced that I had made it through, and that local recurrence of this sort almost never happened so late, with my cancer and treatment profile. He would fight with me every inch of the way and would not let me down. In that call he showed his character and his strength, and he transformed my mood. Murray Brennan called from New York and said I was the last person in whom he had expected to see recurrence. He was shocked, he said. None the less, two years and four months after my original diagnosis, my cancer had returned.

Recurrence is a very different thing from the original diagnosis.

My immediate response to being told I had cancer had been that I would battle through and win. I had a vision of a dark road leading to a light. This framed my entire response to the disease. But the diagnosis of recurrence had a very different effect on me – the road ahead just collapsed, and I was left effectively with nothing, just the kind of fuzzy picture you get if your television stops working.

It was as if my brain and my feelings had a kind of shared malfunction. And it was to get worse as test after test went the wrong way. The DNA of my life was being unravelled. I was used to fighting hard and getting through, used to being optimistic and having that optimism rewarded, but now the opposite was happening. I was determined to fight, but how?

We went down to the Royal Marsden site in Sutton on 10 June and saw David Cunningham. He looked concerned. I had had a PET scan a couple of days earlier and the findings obviously troubled him. The tumour was big and growing and we had to act fast.

This was a turnaround. I had had a mental image of a couple of stray cancer cells floating around my gullet, not some out-of-control tumour working its way up my throat like a malignant alien. David suggested a possible treatment programme, starting with chemotherapy, going through surgery, and then continuing with more chemotherapy and on to radiation.

The reality of my situation lit up before me: I was going to have to do the whole thing again – but this time, as David kindly pointed out, with an extreme operation not a moderate one, with radiation as well as chemotherapy, and with a much, much smaller chance of survival.

Although I had avoided radical surgery in round one, I would now have to face it in round two, when my reserves were so much lower. It was as if the gods were punishing me for an initial failure of nerve.

It was apparent that David’s plan was less a route map forward, more a best guess about what to do. He wrote it down on a scrap of paper, which at least gave it some measure of credibility. But the truth was we were all flying blind. If the cancer had spread I could make no progress. If the tumour was not reduced by chemotherapy then I could not continue, and even then surgery would be incredibly difficult and simply might not be possible.

For all that, however, David had given me hope, and hope was what I wanted. Things may not have been great but at least I had my scrap of paper. The road was coming back.

There was no time to lose. This was Thursday and the chemotherapy was to start on Tuesday. The speed of this response was impressive but it was also alarming. The cancer had to be stopped.

The chemotherapy protocol was different this time, because David feared that the cancer was becoming immune to the drugs that had been used before. He said my swallowing would get better; that it had to get better, as this would be evidence that the tumour was regressing. The idea was that if possible the cancer would shrink almost to nothing.

David’s explanation betrayed his anxiety. Every time I contacted the hospital during the treatment they would ask me about my swallowing. And it simply was not getting better. I could feel the tumour now and it seemed to be growing, like a slug in my throat. It was certainly becoming increasingly painful.

After two sessions, David stopped the first chemo and ordered a PET scan. Kaz called, asking me to see David, and I knew all was not well. Essentially the cancerous activity had decreased but the tumour had not changed size. They said this was no problem but immediately changed back to my original chemotherapy protocol, EOX. Once again I was asked a dozen times about my swallowing, which was clearly not improving. After just one session David ordered another PET scan but the results were the same: cancerous activity was down but not the size of the tumour.

David said there was nothing for it but surgery. There was no certainty that this was possible, but if it could be done, it had to be done quickly. I had the impression that unless it could be stopped in its tracks, the tumour was about to make its final decisive move.

I had dinner with Tony Blair. I was not so much low as lost; I could see no way through. Why had it happened? The first diagnosis I understood: I got cancer as others did and I fought it, with as much determination as I could muster. I had taken every pill, undergone every treatment, done everything required of me, got through the crucial two-year mark and still it had returned. Why had it come back?

Tony paused for a second and said slowly: ‘Because the cancer has not finished; it is simply not done with you, it wanted more. You may have changed but not by enough, now you have to go on to a higher spiritual level still. You have to use this recurrence to find your real purpose in life.’

Tony was right. I had to find meaning in this recurrence, had finally to come to terms with the purpose of the cancer.

Meanwhile a sub-plot was emerging. People at the Marsden were starting to say that this kind of recurrence only happens when there are issues with the original surgery. That this was the reason the recurrence was localised in this unusual way.

I arranged a conference call between Murray Brennan, who had performed the surgery, Gail and me. I expected him to knock any possibility of surgical problems out of the park with his normal self-assurance. But he did no such thing. With some courage he said that he believed he may have adopted the wrong strategy with the surgery, and as a consequence had left too much of the stomach in, where he now believed the cancer cells may have lain dormant.

He was saying he had not been radical enough.

I took this well, and admired his honesty. Gail just issued a quiet, guttural groan, not of sadness but of suppressed rage at the unfairness of it all.

Gail is never at her most relaxed when hearing bad news, especially when its cause was in some way avoidable. In effect the British surgeons had been right: radical was best. But this could be said only with hindsight. The decision had been taken totally on its merits and the responsibility was all mine.

Later I talked to Murray about the surgery, reminding him that he was and is a great surgeon, and that sometimes things just do not work out. That is in the nature of life.

Murray called me at every stage to offer support and encouragement. He stayed on the pitch for the whole game. He is an admirable person.

David Cunningham was not giving up. He suggested Professor Mike Griffin at Newcastle’s Royal Victoria Infirmary. Mike had established the Northern Oesophago-Gastric Cancer Unit, the largest oesophageal unit not just in the UK but in Europe. David believed that Mike was pretty much the best oesophageal surgeon in the world at the moment, and that he was at the peak of his form. Mike would tell me honestly and objectively if surgery was possible. I should go up to Newcastle just as soon as I could.

I phoned Murray Brennan. He said that he knew Mike Griffin well, had been to his unit more than once, and that he was probably the best person anywhere to do this surgery. He also said that he would have been the ideal person to have performed the original surgery, and blamed himself for not recommending it.

It was not his fault, of course. In dozens and dozens of conversations with senior representatives of the NHS and beyond, no one had mentioned Mike Griffin or Newcastle to us. Alan Milburn, who was always caring and considerate towards me, later conducted some research, spending a whole morning on the internet trying to find whether a normal cancer patient could connect either to Mike Griffin’s oesophageal unit or indeed to any other specialist oesophagus unit, but he failed. From a London perspective at least, Mike’s unit was in a kind of information black hole.

That night I phoned Mike Griffin and immediately took against him. I had grown used to relaxed, intimate conversations with consultants in which pretty much everything was conducted with a kind of casual equality.

Mike was having none of that. He made it clear that he would be making the decisions, not me, that there was absolutely no certainty that the operation could be carried out, that this was the NHS and that he was in charge. There would be a week of tests, then a team meeting to decide what treatment was appropriate. He just took the situation over.

I did not like this at all. I wanted the operation to go ahead whatever the tests said, and I certainly was not prepared to cede control to anyone.

I arrived in Newcastle on 21 September 2010. It was a very different journey’s end this time. Kennedy Airport in New York was one thing, Newcastle Central Station quite another. My train arrived beneath a Victorian edifice held together by huge arched spans, the essence of a British railway station.

I took a taxi to the hotel where I was to spend my nights, a large, impersonal building overlooking the Tyne, although with amazing views of a clearly transformed city. Newcastle might not quite be New York, but it still had power of its own.

Far too early the next day, I took another taxi through the drizzle to reach the Royal Victoria Infirmary, a stone’s throw from the Newcastle United football stadium, St James’ Park.

I was stationed for the week in a tiny little ward not far from the oesophageal unit. It comprised just five cubicles, and most of the others were empty. The nurses could not have been friendlier. I had some basic tests and then lay on my bed and waited.

Mike Griffin came in and I immediately realised that I had misjudged him. He was dressed in his scrubs and exuded confidence and authority, his presence immediately making me feel safe. He sat down on the bed and was disconcertingly direct. My position was very serious, only surgery could save me, he said, but there was no guarantee at all that I could have it.

The tests would be taken and at the end of the week my case would be debated at a team meeting. It was not just his decision but the team’s. He was very tough, but his toughness was reassuring.

He had gone to school at Fettes where he was a contemporary of Tony Blair, although my long association with Tony was not in his view necessarily a mark in my favour. He had played rugby for Scotland, moved into medicine and then decided that oesophageal cancer was his life. He had looked for somewhere to set up his unit, decided on Newcastle and then built up the largest and probably the best centre of its kind anywhere in the world.

He worked seven days a week, usually starting at half-past six in the morning and finishing at ten or so at night. He never stopped, seeing all his patients twice a day, sometimes more. He instinctively distrusted southerners, New Labour and private medicine, which meant I had a lot of ground to make up.

I completed the week of tests, culminating in an endoscopy which he performed himself. Later that evening he came in to see me, and I felt that in some way I had won him round.

He could not say for sure if the surgery would go ahead, but he was prepared to say there was nothing in the endoscopy that would stop it happening. He was giving me a very faint green light. Then we chatted about cancer and life and I started to talk – typically – about my cancer journey.

He stopped me dead in my tracks, looked me in the eye, and said the one mistake I had made was leaving the NHS. If I had stayed inside it, I would not be in this position today. I argued back, explaining my particular circumstances, but it was all humbug to him. I had left the NHS and I had blown it. He loved the NHS, and he believed that what made it work and what made it special was a commitment to public service that transcended private interest.

He was uneasy about private medicine, particularly in the treatment of cancer, believing it to be corrosive and distortive of clinical priorities. I do not believe he is right, but there is truth in his argument: there is an extraordinary spirit of public service at the absolute heart of the NHS, which is why people value it.

But even Mike was not totally closed-minded on all of this.

He knew Murray Brennan well and admired him, and thought Memorial Sloan-Kettering a remarkable hospital. But he believed that in the end, when it comes to health, private means bad.

In this he was my polar opposite. He was happy and comfortable with private schools, while I am not; he was sceptical of private medicine, while I am much more open to it. Perhaps it was because his father was a reputed surgeon in the NHS and my parents were both teachers in state schools. But he was right about me, I would have been better to have stayed in the NHS.

If only I had listened to Georgia.

The next morning Gail came up and we waited nervously for Mike’s verdict. I was more optimistic because of our meeting the night before, but after so much bad news my capacity for hope had withered somewhat.

Mike immediately made it clear that the operation was possible. Even if surgery was successful, however, I had only a 25 per cent chance of five-year survival. And there was a 30 per cent chance that they would start the operation and not be able to finish it because the tumour could not be removed, which to me was a horrible prospect.

There was about the same risk of removing the tumour and not being able to reconstruct my oesophagus, which meant I would have to have some kind of feeding tube in my throat. This did not seem to worry Gail, who just wanted me alive, tube or not.

A second operation of this sort was taking me into unknown waters. It would be much tougher than the first and there was no way of predicting how difficult it would be, nor in all honesty its impact on my quality of life.

I asked how long I would live if I did not have the surgery. Mike replied: six months to a year. He asked what my decision was: did I want the surgery or not? It was a stupid question; of course I wanted the surgery. I had fought for it for months and now it was going to happen. I did not mind if I walked around with a tube in my neck, I wanted life. He gave me a date – 26 October – and we went home, happy.

I used the intervening period as best I could, spending a lot of time with my daughters, going on trips with both, and to Venice again with Gail. Grace stayed with me for much of the time, which was wonderful. Georgia was always around. I got as fit as I could, rewrote my letters to my family, and went once again to see the vicar about the funeral. This time I was stronger but sadder. I did not want to leave my family, and especially not my wife.

On the Friday before the operation, Tony came to see me, just as he had on the eve of my previous surgery. He said one of his most precious possessions was a sixth-century ring from Mount Sinai. He gave it to me for luck. I was touched but anxious, certain that I would lose it. I lose things very easily.

I travelled to Newcastle with Gail on Saturday 23 October and arrived at our flat, which was modern and flash, like something out of Footballers’ Wives. It was in the heart of the city and you could see and hear the nightlife. Nothing, not rain or gale force winds or severe snow, stops Newcastle kids from going out at night and having fun. But they were all so friendly, it was impossible not to love it there.

That night we joined in and had dinner surrounded by a crowd of incredibly glamorous-looking young people, easily forty years younger than me. We walked back through the cold, picking our way through students using the pavement as a temporary bed.

The night went well. By now we were old hands at pre-surgery sleeping. The next day we arrived at the oesophageal unit – Ward 36 – exactly on time, as though punctuality would in some way increase my chances.

I was put in a reasonably sized cubicle with a television and a little shower room. And then we waited as a stream of clinicians explained to me how dire my immediate future looked.

This is Mike Griffin’s way: to be totally honest and totally explicit about bad news. One after another they came in: the excellent anaesthetist, Conor Gillan, who said an epidural was the preferred method of pain relief, and that it should work, but might not; Rachel, an outstanding specialist nurse who said it would be tougher than perhaps I thought; and then a representative from the intensive care unit, who said it would be like a kind of torture: deprived of sleep and food for at least a week.

And in the middle of this Mike dropped in, clearly anxious, making it plain that there was a serious chance that the operation would have to be aborted after it had begun. I shared his fear; I hated the thought of waking up to failure.

By the end of the day, I was drained of energy and emotion and Gail had just had too much. We were battered into submission. Mike came one last time, saw Gail and moved to reassure her. When she left I felt lonely. I slept a little but woke often, hoping the morning would come slowly.

Gail arrived at six, and with incredible strength had recovered all her poise. And then we started an absurd domestic row. I, like a fool, had been drinking water during the night, and a nurse had said this might be a problem for the surgery. Gail simply could not believe I was capable of such complete stupidity. But the bickering got us through the next hour.

Then Mike came in, exuding an aura of confidence that completely calmed us down. There were no doubts now, no worries about an aborted operation; he had risen to the moment.

At 8 a.m. they came for me, and for the second time in two years I left Gail for a serious operation. I walked through the corridors leading to the operating theatre with an equal mixture of fear and excitement. There was no escape now. I had to do it, and although I was scared, I was also resolute. I was up for it.