When I Die: Lessons from the Death Zone

The Glory of the Ride

It starts at ten o’clock on Tuesday 29 January 2008 in a private clinic in London…

I am lying on my side at the mid-point of an endoscopy, sedated but fully conscious, hearing the quiet hum of medical conversation as the endoscope gradually eases down my gullet, displaying all it sees on television screens. I prefer not to watch.

Until now all has gone well, the voices calm and subdued, but then it is as though a goal has been scored at Wembley, the room exploding with noise and energy: they have discovered a cancer, and I hear the word ‘big’. They talk as if I am not there, a bystander at my own demise.

Eventually the endoscope is removed and the doctor tells me with barely concealed excitement that they have found a growth that is certain to be a malignant tumour and that it is large. I fear the uncertainty more than the diagnosis. ‘What are my chances?’ I ask. ‘Fifty-fifty,’ he replies and I feel a combination of shock and hope. Not great, but better odds than I thought they might be. I have a chance.

Suddenly a surgeon arrives as if from nowhere. He quickly inspects the images and tells me that it is a junction cancer situated between my oesophagus and my stomach. In a second I have lost control of my world.

I am wheeled out of the operating theatre and return to my cubicle, now a cancer patient. My wife, Gail Rebuck, rushes in, her face full of love and hope, certain that I will be all right. Just an hour ago I had been told that the chances of cancer were remote and I had phoned to reassure her. It was a mistake to have done so, creating false hope.

I tell her the new truth, harshly because I am nervous, and she almost physically recoils, as though punched in the stomach. She says that it will all be fine but does not believe it. I phone my daughter Georgia who is doing some research in Manchester and she is stunned, unable to take in the information. Gail takes the phone and leaves the room to talk to her. I can hear them through the door; it is clear that they are both in floods of tears. I am not the victim here.

We drive home in silence. Gail is distant; she sees the contours of her life shifting in front of her. I feel guilty. I have let her down.

I made an immediate decision to be as open and honest as I possibly could about what had happened, reaching out to people rather than trying to do it alone. I needed help but I also had to give help. I do not consider myself someone who naturally leads, and if I do so at all it is by creating a shared spirit, pushing forward with enthusiasm and energy. But this was different, I now had an explicit responsibility to lead. I was reliant on the support of others, but they too were relying on me.

I started calling and the conversations went well. I sensed affection and it immediately lifted me. I thought, if only I had known they liked me so much before I got ill. Mostly they said one of two things: ‘You are too happy to have got cancer,’ or ‘You are so strong you are bound to get through.’ The first assumption had already been proved wrong; I hoped the second would not be.

The first call after getting home was to my younger daughter Grace, who was in Oxford. I did not want to tell her the news over the phone, so I said that we would be coming up that evening to see her. I told her that it was serious, but I wanted to speak to her face to face. This was not perfect but it was the best that I could do.

My sister, Jill, was shaken but full of kindness; she is a priest and she found the right words. Gail’s parents were beside themselves, difficult to console. Peter Jones, my closest friend from our days at the University of Sussex, was as always incurably optimistic, but I could feel his anxiety.

Alastair Campbell was stunned. His life had already been touched by cancer, and now he was seeing another of his closest friends and political colleagues fall prey to the disease. But he was, as always in a crisis, totally solid and absolutely loyal. Nothing is too much for him at a moment like this.

Afterwards he called Georgia to reassure her. She later told me that when I called she had felt complete panic, never having considered the possibility of my death or even illness. She was devastated, almost hysterical, walking aimlessly around the streets of Manchester until Alastair called her. Our children had grown up together and were as close as family, and Calum, Alastair’s younger son, who was in Manchester at university, found her and stayed with her. Together they brought her back to life.

Matthew Freud, whose company I had just joined, reassured me that whatever happened he would stand by me, a constant friend. Anji Hunter gave me an uncompromising blast of Middle England fortitude, just as she had done so many times before as Tony Blair’s ‘gatekeeper’. Peter Hyman, a Blair strategist who left Downing Street to become a teacher, reacted with all his normal compassion and integrity. In the 1997 election we had jointly created the Labour Pledges, and had become very close.

Then I called Downing Street, something I had once done often but which rarely happened now. But ‘Switch’, as the switchboard is known, remembered me and the telephonist was kind, sensing something was wrong. The next day I was due to make a presentation to Gordon Brown on public perceptions of him based on some polling that I had done. I got through to someone deep in his office and said that I would be unable to do it because I had been diagnosed with cancer. Within minutes Gordon phoned back, his deep gravelly voice betraying genuine concern. This was the first of many calls he would make. The presentation went ahead without me: the findings about him were harsh and I felt guilty for inflicting them on him.

That was how the day went, calling and being called. I knew that one part of me enjoyed being the centre of attention, and while wary of this, I was prepared to use it to help get me through.

At about six we drove to Oxford. Resilient as ever, Gail had recovered. It was a quiet, reflective journey; mostly we were worrying about how Grace would take the news. When we arrived she was standing confidently outside her college, looking cool and contained. I said straight away that I had serious cancer and her response was typical – blunt with an edge of humour: ‘I knew when you phoned that either you had cancer or you and Mum were getting a divorce.’

We had dinner, which was warm and close, but with an undercurrent of anxiety, and I was very sad to leave her. Gail and I drove back without speaking much.

So the first day with cancer ended.

That night I woke and for a moment felt fear and panic, black thoughts attacking like demons. A survival instinct kicked in and I treated my fears almost like a video game, repelling each negative impulse one by one, turning them from dark to light. This worked well enough, and the demons never got through. (In time I was to develop a crude form of meditation and used simple affirmations that worked almost all the time. I learnt how to change my mood, a basic skill of cancer survival.)

The next day I returned to the London Clinic to meet Satvinder Mudan, the surgeon who had suddenly appeared during my fateful endoscopy. He was young, energetic and articulate, and enjoyed the ebb and flow of argument. Like many surgeons he took the glass-half-empty approach to life: the operation would involve a great deal of pain, the worst of it three or four days in intensive care that would be noisy and unpleasant, survival and cure a long way from guaranteed.

After a couple of sessions he gave my wife a copy of a book he had edited on cancer of the oesophagus; it was full of colour pictures of rather horrible-looking tumours of various kinds; worse, it claimed the survival rate was less than 10 per cent. Perfect bedtime reading for Gail.

This was the first I had heard of oesophageal cancer, which I now know to be the solid cancer with the most rapidly increasing number of cases in the world at present, and one of the most lethal.

It is impossible to know when my cancer started. From a young age my stress had revealed itself through my stomach, and gastric pains had been a feature of my life. A doctor told me that my form of oesophageal cancer often caused painful symptoms when first established, but then lay low, perhaps for years, with few if any symptoms until it was too late. That is why the cancer is so lethal.

This description fitted my pattern exactly: I had experienced a short phase of acute discomfort, but this had passed and been replaced by low-level indigestion, and a slight cough when I ate. Enough to worry me now and again, but never enough to persuade me to confront the issue and have an endoscopy. I knew I should have done it, but I never quite did.

Satvinder made clear my position: if the cancer had spread I would not survive, but if it had not, then cure was possible. The next week would involve numerous tests to see if we could advance to surgery. I liked him. He was confident and sharp, and from where I was sitting he was all I had. I wanted help now. And he was fast and very competent.

That same day I was to have a CT scan, then in the following days a laparoscopy, a PET scan and an endoscopic ultrasound. Tests I had never previously heard of were to govern my future.

Back home the flow of calls had become a flood, and the house was filling with flowers. I wrote in my diary at the time that ‘I felt engulfed by a tidal wave of love from dozens and dozens of people, and this love has an almost physical power, lifting me up during all the bad moments and carrying me through. At night I can almost feel the power of prayer.’ Peter Mandelson called with a typically stringent view: ‘It will be tough but other people have got through it and so will you.’ He was right, of course, as he often is.

On Thursday, Tony Blair visited, and so began an entirely new phase in our relationship. Until then we had been friends and colleagues, close but in a way constrained. Cancer was to change that. At that first meeting he displayed an emotion I had not seen before, saying that he had taken me for granted, had acknowledged my contribution but not fully appreciated it. I felt this was not just about me but about him, this brush with cancer releasing emotions that office and the negativity of public life had in some ways silenced.

And there was another reason too. Tony is a deeply religious person, imbued with a strong sense of values, but he believes that these values, and his religious conviction, belong properly to a private realm, not the public world that dominated so much of his life. He made a kind of distinction between Church and State, and is in that way a secular politician.

But with my cancer we had left the public world and were living completely in the private realm, and his compassion, his religion and his values could in a way be liberated. What is certain is that he could not have been more assiduous in his support for me and my family throughout my illness, contacting me almost daily for much of its duration.

This division between public and private life is the fate of all politicians. They are constantly scrutinised but only rarely understood. I mention political people often in these pages, partly because they are my friends and are intrinsic to the story, but also because I want to show what they are like out of the limelight, acting as private individuals, and how, without exception, they never let me down.

The next Monday I returned to the hospital and was given the results of the tests. Satvinder said I had a carcinoma of the gastro-oesophageal junction, that the type of my cancer was adenocarcinoma (the type associated with high-stress, middle-aged, middle-class living, i.e. you lot reading this now!), and that it was about five centimetres wide at its maximum. There was no evidence that it had spread and we could now proceed to chemotherapy.

On Satvinder’s advice I decided to be treated by Maurice Slevin at the London Oncology Centre. By now I was fully immersed in the private system, something that caused my daughter Georgia great distress. She said I should stick to the National Health Service. In my heart I knew she was right, but for the moment I was clinging to the certainty of what I knew. I was using private medicine partly for rational, partly for emotional reasons. I had got into the habit of having my regular health tests carried out privately after my GP had told me that he did not believe in preventative testing, considering it to be counter-productive.

When I first noticed a difficulty in swallowing and knew I had a potential problem, I went instinctively and immediately to a private clinic which diagnosed the cancer and charted the way forward. Of course I could have changed direction but at that moment I was nervous of disruption, and at some deeper level anxious about the NHS. This was to change, but not for a while. I wanted security.

Maurice Slevin was an energetic South African who my wife rather disconcertingly described as dashing. Everything about him was high-tech and modern, with no trace of the genteel comfort that is normally the hallmark of private medicine. He was confident, articulate and impressive, and helped me through this early period. He made it clear that almost certainly the chemotherapy would not be as difficult and frightening as I thought it might be.

He explained that I would undergo the standard protocol for oesophageal cancer, called the MAGIC trial, which had been developed in the UK and was now used around the world. This meant three sessions before and three after the surgery with a combination of drugs called EOX (epirubicin, oxaliplatin and capecitabine). I would probably lose my hair, but even that was not certain if I used something called a cold cap that would freeze my head during treatment (which, it was to turn out, was the worst thing about the whole process).

The actual chemotherapy was done in a light and friendly basement, with each patient sitting in one of what looked like a pair of airline seats. My first treatment was on 12 February. It started at about nine in the morning and consisted of a series of intravenous drips that were fed into my body through a ‘port’, which had already been inserted via a minor operation.

First came a water flush, then anti-sickness drugs, then the two chemo drugs; a third was to be taken in tablet form at home. None of this hurt or was unpleasant, although I was disturbed to find that the second drug turned my pee a horrible bright red. The treatment was strong and I could immediately feel the power of the drugs moving through my body. Still, I felt I would be able to cope with it.

Gail came and sat with me for hours during these sessions, as did Sally Morgan. Sally used to run the Blair political office, where her friendliness and huge warmth belied a hidden toughness. She had protected Tony in the tough middle period of his prime ministership, and was a constant support to me.

Meanwhile, I was focusing on the serious matter of fighting the cancer. Georgia had bought me the complete speeches of Churchill and I listened to them as I ran on a running machine, trying to get fit for the operation.

Everything I thought about the battle with cancer was strategic, as if I were fighting an election campaign. I saw the elimination of the cancer as victory, and the test results as opinion polls. Alastair Campbell called the cancer Adolf, and me Churchill.

People might have thought I was mad, and in a way I probably was, but that was how I felt, how I had always lived my life. I loved politics, and loved elections even more. My first had been in 1987 and I expected my last to be in 2010, although I always hoped privately to do more. But above all I loved to think, to strategise, to solve the unanswerable political problem. And this is what I was doing now, thinking constantly, not just about how to get through, but about the best way of getting through.

For me strategy is not a static thing, but fluid and ever changing. As my time passed I was to become, I hope, stiller, and calmer and more reflective, reacting in new ways to the new demands of cancer. But my instinct is always the same: identify the problem and find the way forward. In the end, of course, there may not be one, but that moment, too, will have its own answer.

As the surgery got closer I had to put my affairs in order. I made a will and organised my funeral. This sounds far worse than it is. The very process of working out the order of service and the music dispels anxiety. When Gail and I went to see the vicar to discuss all this, we rowed horribly all the way there. But, when faced with the reality of the funeral, we immediately grew calm. We felt this was a small defeat for death.

Although my treatment at the London Clinic and the London Oncology Centre had been exemplary I became convinced it was time to move on; I wanted to get back to the NHS. My first instinct was to go to the Royal Marsden Hospital, but they had just suffered a major fire and I was told by someone attached to the hospital that surgery there would not be advisable for a while. I spoke to many senior consultants within the NHS – Ara Darzi, the distinguished cancer surgeon, was particularly helpful at this time, on an entirely informal basis – and was given names and hospitals, but could find no consensus as to where I should go.

One day I asked a leading NHS consultant where I should go for my best possible life chance. He answered without pausing for thought: Murray Brennan at the Memorial Sloan-Kettering Cancer Center in New York City. And he was not alone in saying so. In the end, after endless discussion and investigation, we arrived at two options, both of which we believed to be equally valid: a well-respected surgeon at a London teaching hospital and Memorial Sloan-Kettering. The advice I had been given was generous, impeccably fair and informed throughout. But in the end the decision was mine, and I take full responsibility for it.

I went to see both surgeons. The NHS consultant was charming and proposed a radical course of action. He wanted to perform what is called an oesophago-gastrectomy, in which the tumour would be fully removed. He sought to do this not just by entry through the stomach but by cracking open my ribs and gaining access through the chest. He believed in taking out as much of the stomach and as many lymph nodes as possible. He told me there would be pain and discomfort and it would be tough, but that patients get through it and it is worth it for the improved life chance. I liked him, but felt uneasy. I was not sure, and planned to visit New York.

On 21 April Gail and I walked to Memorial Sloan-Kettering in New York City in the spring sunshine. The hospital soared above us like a vast office block, right in the middle of Manhattan, with a reception that was more corporate than medical. Above us was floor after floor offering what appeared to be an infinite variety of cancer specialisms, like a great cancer department store.

I arrived at Murray Brennan’s floor expecting the atmosphere to be like a typical British private hospital: faded, plush and very quiet. It was the opposite, utilitarian rather than comfortable, reflecting both the harshness of New York and the ethos of the hospital, which is to kill cancer whatever it takes. And far from being quiet it was heaving with people, waiting largely to see Murray himself. They were less like patients waiting to see a doctor, more like pilgrims coming to see a healer.

In any event we waited a long time, far longer than in any other hospital before or since, and we finally met Murray only for a short time. But in that period he was impressive, even if he also seemed to be holding back. He is a New Zealander not an American, taciturn to the point of coolness – at least at first meeting. He has had a hugely distinguished career, having been chairman of the surgery practice at Memorial Sloan-Kettering for more than twenty years.

He told us my cancer was very serious but that he was confident there was a good chance of fixing it. He was proud of his hospital and its high survival rates, putting this down not to any single factor but to a connected system of excellence. And he said that Memorial Sloan-Kettering was not a private hospital but an endowment hospital, seeing 20 per cent of its patients on a not-for-profit basis.

In contrast to what we had heard in the UK he preached moderation rather than radicalism. I would not go to intensive care but straight to a recovery room. He would perform a full resection (removal of the tumour), but he intended to confine entry to the stomach and avoid secondary access through the chest, which he was strongly against.

Gail liked his approach because she considered it a more moderate, sensible option and she disliked my predilection for extremism. But she was not relaxed about going to the United States and was nervous about the possibility that the care would be fragmented and dislocated. I liked it because it seemed the boldest option, offering the best chance of survival and the lowest level of discomfort.

The hospital was impressive but the atmosphere felt unyielding and hard; it was disconcerting to see Gail paying by credit card there and then. It was efficient rather than warm.

Once we were back in the UK we were unsure and ungrounded, not knowing what to do. Our problem was not just that we were uncertain, but that we were making our decision in a kind of no man’s land, connected to the NHS but not really part of it. Although I had regained contact with NHS consultants I had not connected properly with the NHS system. I had left one harbour, but failed properly to reach another.

So I gave it my best shot and asked everyone I respected, including all the right NHS people, what I should do. The view was pretty unanimous: Memorial Sloan-Kettering was an excellent facility and probably the best choice. There was no agreement at all on a preferred NHS equivalent.

And in the end, if New York offered the best chance of life, I felt almost morally obliged to go there. I felt at ease in America, having visited it many times, and having grown fond of it while working on Bill Clinton’s 1992 election campaign. I decided to be bold. We were going to New York. Gail was not so sure. She thought I was being stubborn. But she respected my decision.

The surgery was scheduled for 1 May, exactly eleven years after the general election victory of 1997. I considered this to be a good omen, but I was growing increasingly anxious. The date cast a shadow over the future, and every day it moved closer. My fear was less what would happen, more its inevitability. There would be no escape.

Spring gave way to early summer and it was time to leave for New York. Gail had to come out later so I flew there alone, then took a yellow cab through the city, something I had done many times before. I felt secure in the familiarity of the New York landscape and drew comfort from the fact that I still had a week to go, but deep down my anxiety was slowly growing.

This was New York, but it was not quite the New York I had always known. I was a patient, not a tourist. It was as if my vision had become blurred.

I checked into an apartment hotel on 64th Street. The staff were not welcoming but I had a small balcony overlooking the city and although I was alone, I was not lonely. I welcomed the privacy. Each day I got up and spent an hour or so in the gym, did my breathing exercises and walked in Central Park.

The kids had packed photos of the family which I put up, and given me a Zen Dog T-shirt to wear on the day of the surgery. It read:

Those words pretty much summed up my position.

In the coming days I had a CT scan and an endoscopy, which were both done to a high level of expertise and care.

I went to see Murray Brennan again. He was more approachable this time, if still a little brusque. He said he wanted to treat the surgery as a stomach cancer rather than an oesophageal cancer, and repeated that above all he wanted to avoid breaking into the chest. He only wanted to make entry through the stomach.

I talked to a nurse about what it was going to be like on the day. She said that I would just walk into the hospital on the morning of the operation, spend a couple of hours in a holding room with my wife and then walk alone down a long corridor to the vast operating theatre. It sounded like the last walk of a condemned man. She helpfully suggested I might like to take a tranquilliser before I started.

Gordon Brown phoned me in New York, asking how long the operation was likely to be. I said, ‘Six to eight hours,’ and he replied: ‘That will not be bad, that was the length of the operation on my eyes.’ I had never heard Gordon speak like that before or since. It was a moment of complete connection.

The day before the surgery I wrote letters to each member of my family in the unlikely but nonetheless possible event that I did not make it through. I completely broke down doing this. It was agony.

Gail arrived that afternoon. She was, and is, CEO of the publishers Random House, and was under huge strain at work. It was incredible that she was now to stay with me in New York for two months, working in her company’s New York office. I did not think I deserved that.

She busied herself making the flat into a kind of makeshift home and we talked continually. It was a night of unimaginable closeness. Cancer is the cause of so much distress but it is also the source of great intimacy. Never will I forget that time.

On the day of the operation I woke hollow with anxiety, but also with an edge of excitement. I put on my T-shirt and we left ridiculously early, walking to the hospital, inevitably getting lost and gently rowing about it. We took the elevator and made our way to the holding room. Murray arrived wearing a bright red bandana. He gripped me in a bear hug. ‘Now it’s up to me to save you,’ he said, and in that moment I felt his power and his warmth.

Another hour and a half went past and it was time.

I walked with Gail for twenty yards or so and then she fell away and I was on my own. I entered the operating theatre, which was vast and glittering, with video screens hanging from the ceiling, and in the middle a small bed, utterly dwarfed by the epic scale of the stage. Murray ignored me, scrubbing up in the corner. I climbed on to the bed, and the anaesthetist put me out of my misery.