When I Die: Lessons from the Death Zone

The Courage of the Small

Above me I saw a bright and shining light and I knew I was alive.

I gulped in the elation. I was alive and just felt immense relief. Gail came in and I talked to her and called the kids. Grace was worried. Georgia was happy. I did not sleep at all that night, watching television on a high of adrenalin.

I cannot remember ever feeling quite so happy. But this happiness was an illusion produced in part by steroids. In the morning I moved to my permanent home within the hospital, a small, sparse, stark room which I was to share with a volatile New Yorker who rarely stopped talking. There was no window. It was, of course, fine but a room designed for utility not satisfaction.

Gail described to me what the day had been like for her: hell. Waiting with no information until finally Murray Brennan appeared, his white coat stained with blood, looking exhausted, as though he had been battling a whale. He said the operation had been incredibly tough, and that he had battled to avoid breaking through my ribs. He had struggled to rejoin the two ends of the oesophagus from which the tumour had been cut out.

Murray wrote at the time: ‘We performed an oesophago-gastrectomy on Lord Gould today. We were able to do it from the abdomen, but it was a high anastomosis so we need to follow him closely.’ It was clearly a tough op, for him as well as me.

I settled into my new room and started to fade. I had tubes everywhere, including one in my nose. My face drained of colour and I went a dreadful shade of white. Gail said I looked more dead than alive. She hated it there, the room, the thin curtain that separated me from my room-mate, my appalling appearance, the strangeness of it all. For several days I could not drink, only suck on cotton-tipped sticks dipped in water.

Then there was the problem of language and communication. Because of the dryness of my mouth and the tube in my nose, I could barely talk and much of what I did manage to say was unintelligible. Most of the nurses could not understand what I was talking about and clearly suspected that I was being inhospitable. By contrast, all the New Yorker had to do was grunt and he seemed to be immediately understood.

The day was bad but the night was worse, the morphine turning the hours into a terrible, ever-moving nightmare of fears and dark forces. During this period my room never seemed to be still – it was always moving, shifting, contorting and somewhat threatening me. This was what the nights became: endless New York banter and a moving inchoate darkness.

The next day my spirits slipped further. I woke up feeling bereft of energy and the pain of the operation was starting to wear me down. I felt that the only way to cope was to retreat and conserve whatever energy I had.

In my head I called this – rather absurdly – the lizard strategy. Hunker down, hide, retreat. It did not work. It sent a signal to my surgeon and the nurses that I lacked the firepower to see the process through, and by sending out no energy it meant that less came back to me.

Murray became convinced that my low mood was the consequence of a leak – a failure of the surgery to join the various parts perfectly – and immediately ordered a CT scan. This involved my drinking a contrast liquid, which was no fun at all, and holding a position during the scan that was, so soon after the surgery, even worse. There was no leak but I learnt my lesson. I work best when I am positive, and when I am not things get worse rather than better. From that moment on my recovery accelerated and confidence in me improved. I was on the way up.

From day two, even after major surgery like this, the medical staff insisted on mobility, effectively to stop fluid accumulating in my lungs. This, it was hoped, would lessen the risk of pneumonia.

Mobility means walking, and somehow or other they got me out of my bed, attached all my tubes and bottles and drains to a frame and sent me off on what I called the walk of death: a seemingly endless journey around the inner core of the building. Each step was a huge effort, a full walk round the block an eternity. At first I had to do it five times. Then ten. Then twenty.

I was not alone in this enterprise. Other patients who had had the same or similar operations were also walking, all looking more like apparitions than people, washed out, white-faced, haunted. No one spoke, no one even smiled. We just walked on, like ghosts.

But for all the misery of the walk of death, day by day things got better. One by one, the drains and tubes were removed, and within a week I was walking normally and unaided, an incredible testament to the human body’s powers of recovery.

Gail visited me twice a day for long periods, even though she was working flat out. She did not like the hospital, finding it harsh and unyielding. In a way she was right, but this brutality was also the hospital’s strength. It was a cancer terminator, unwavering in its determination to cure the disease. It was New York and it was a tough place.

Each time Gail tried to get me moved from my shared room to one of the few single rooms on the floor she failed, always pre-empted by someone else. Then a nurse gave me the secret of success: the only way I could secure a room, she said, was to take all my possessions and just squat in one, which I did.

That is what it is like in a New York City hospital. But the longer I was there the more I liked it.

For a start I could talk rather than mumble through tubes and dryness. I got to know the nurses well, and they were exemplary – the nurses on my floor had been voted the best nursing staff in the north-east of the United States. The average time most of them had spent on this ward was more than ten years, and they were caring and efficient. They did not wear uniforms but jeans and T-shirts, and they were confident in their role.

The doctors, too, were excellent, many of them coming from all over the world as fellows for short periods to experience life at a major cancer hospital. They were sharp, bright and intellectually curious. I spent hours talking to them. I could not say I liked Memorial Sloan-Kettering, but I admired it.

About five days after my surgery, Murray bounded into my room with an enthusiasm that belied his previous coolness. ‘We have your histology results and they are excellent,’ he said. There were no cancer cells in any of the lymph nodes – I could start planning a second career.

He would not stop talking, saying his previous taciturnity reflected his fear that at least one of the nodes was contaminated with cancer, which would have significantly affected my life chances. Now he was all optimism: I had a 75 per cent chance of five-year survival.

I felt hope, and a softly growing excitement, the same sense I have felt on so many occasions – and in so many elections – that despite everything I had won through.

Two days later, as so often with cancer, a step forward was followed by a step back. The surgery wound was looking red and sore and Murray said it was infected. His response to this was not to use antibiotics, which he disapproved of because they encouraged MRSA, but to open the wound and let it heal naturally. He was confident that it would be healed in two or three weeks.

The infection introduced me to a process known as packing, not my favourite moment on the cancer journey. Packing involved pushing gauze into the open wound with a kind of wooden spatula. The gauze was then pushed down to the very bottom of the wound, and more gauze was packed in until the wound was completely filled. Although not painful, this was uncomfortable.

Almost worse was the pre-packing cleansing in which I had to wash the open wound in a shower, not just externally but internally. I will not forget looking down at this vast, gaping, blood-red wound that seemed to go so deep into my body that I could not see its end, and then trying to flood it with water.

This process was to be repeated twice a day, for more than two months.

The day before I left hospital I needed to get my wound checked by one of the younger doctors. The only place they could do this was the outpatients department, effectively the hospital’s A&E. This seemed to be the main point of contact with the hospital for those with fewer resources, possibly getting their treatment for free. It was a demanding place to be, functional at best, with little hint of comfort of any sort. Many of those in the waiting area were African American and many were showing signs of distress. One couple in particular stood out. He was in late middle age and had a feeding tube directly into his throat. He was in some pain and gasping for breath, making a harsh rasping sound that echoed round the room. His wife held him partly through love, partly through panic. I smiled at her but she looked at me blankly, no sign of a response.

After a while the doctor called him in and she was left alone, and she immediately responded with a huge smile. She said that these few moments alone gave her some relief, that when she was with him she simply could not relax. And she was with him, she said, almost all the time, day after day, night after night.

I began to understand what cancer meant for those without resources, without help, without insurance, without any kind of reliable medical support. These two were lucky, they were being treated, and in an outstanding institution. But what about those who were beyond the reach of such care, not just in the United States but elsewhere? Cancer is tough at any time; in poverty, without proper treatment and support, it must be hell on earth.

The next day I left the hospital, and walked into the warm mid-May sunshine. There was blossom on the trees, and it was impossible not to feel a moment of happiness – I had got through it and I had won.

We returned to the hotel and I attempted to get back to normal. But normality was not so easy to find. I went out to dinner and ate some chicken, which got stuck in my throat. I struggled home, with acute pain and occasional vomiting. It took two hours to clear the chicken from my throat. This happened time and time again. And if it was difficult for me, it was far worse for Gail.

Meanwhile the wound packing, done by two nurses from the hospital, continued twice a day. Each day followed its own routine. A walk to the park, a few futile attempts at eating, the evening spent watching the politics shows, which all focused on the US primary elections.

Of course I loved the constant, obsessive attention to the elections night after night. I favoured Hillary Clinton for political and personal reasons; working on her husband’s 1992 campaign had been formative for me on almost every level. But I was confident Obama would win, it was his moment.

There was the occasional break in routine. Ed Victor, my literary agent and a good friend, visited and we watched on television the Champions League final between Chelsea and Manchester United in Moscow. But mainly it was politics and packing.

So my time in New York passed.

I flew back to London on 30 May. I was determined to move lock, stock and barrel into the Marsden, arranging to see Professor David Cunningham, head of the gastro-intestinal unit.

Before my appointment I saw my private oncologist, Maurice Slevin. He disagreed completely with Murray Brennan’s prognosis. He said that the margins were small, and that his analysis showed a less than 40 per cent chance of five-year survival, not the 75 per cent suggested by Murray. He recommended radiation, flatly contradicting the advice I had received in New York.

Next I saw the NHS surgeon I had decided not to use. He was emphatic. The wrong operation had been done, too few lymph nodes had been removed, and I should have had a full resection entered through the ribs. He also said, for good measure, that my wound would take another four to six weeks to heal, and that I had a massive hernia, the wall of my stomach having effectively collapsed as a result of the infection and the open wound. Fixing it would require another, quite major operation.

This confused and frightened me but my experience was not untypical. Medical opinion is rarely unanimous; there are often differences, sometimes small, sometimes big. I told Murray what the surgeon and the oncologist had said and a fierce transatlantic email battle ensued. Murray was angry, certain that he was right. It felt like the revenge of the British. I backed Murray.

I liked the Marsden the moment I went into it. It is warm, friendly and welcoming, and looks and feels efficient. I had found that I preferred hospitals solely dedicated to cancer because of the shared sense of experience and purpose. Every patient is in the same boat, and every member of staff understands that.

After a while the Marsden became like home for me. Culturally it is a very long way from Memorial Sloan-Kettering which is obsessive, functional, populated by large numbers of outstanding consultants and clinicians, confident in its own excellence, relentlessly storming the cancer barricades.

The Marsden is small, but still manages to be rambling. It has an implicit philosophy that beating cancer is important but so is the quality of life of those involved in the struggle. It may not have the relentless consistency of Memorial Sloan-Kettering but, with its numerous world-class consultants, it has a kind of understated brilliance that often equals anything Sloan-Kettering has to offer.

It can be frustrating – internal communication is far from perfect – but its merits massively outshine any defects it might have. The Marsden is, of course, an NHS hospital, and although it receives 30 per cent of its revenue through private patients (of which I was one), this does not fundamentally affect the character of the institution.

Patients in the United States probably feel more empowered than they do here, and they are probably treated with more efficiency, but the culture at the Marsden is warmer, less transactional and much more egalitarian.

Professor David Cunningham is a world-leading oncologist and was in fact primarily responsible for the development of the MAGIC trial which has saved and extended so many lives. When we went to see him in early June he was wary. I had arrived at the Marsden in mid-treatment, after rejecting it for a hospital in the United States and chemotherapy in Harley Street. I suspected that he did not know quite what to make of this, and that he was not hugely impressed by our choices.

Though professional and obviously highly competent, David was reserved rather than warm at this first meeting. Impressions were deceptive because I was later to learn that he is a genuinely warm figure with an impressive capacity to inspire, but he reveals his strengths slowly. He has the knowledge and the skill to meet the moment: the right advice or the right insight pops out of him at just the right moment.

David was gracious enough to concede that Sloan-Kettering was an excellent hospital and that if I had to be given chemotherapy by anyone in London, the best person to take care of it would be Maurice Slevin. This was generous of him, but I knew I had some work to do.

He slightly changed my chemotherapy protocol, moving the pill capecitabine from two weeks out of three to a continuous daily intake. I was worried that I was not to have radiation as Maurice suggested; he said that he would not recommend it.

I asked him what my life chances were. He would not commit himself. He just said they were good. I left, I am sure, more impressed with him than he was with me.

I started my post-surgical chemotherapy and felt confident. I had done it before and would do it easily again. Thus I made one of the common mistakes with cancer, which is to take things for granted.

Although a little slower than it had been with Maurice, the process was efficient, and the nurses excellent. We arrived at nine and left at about five. It was a long day but manageable.

But when I got home it all felt different.

The first time around my body had easily absorbed the chemotherapy, but this time I felt its presence more acutely, my body suffused with chemicals. My feet and fingers tingled painfully, making it completely impossible to touch anything from the fridge, and after a while I felt almost controlled by the chemicals flowing through me. It was as though the sensation of the cold cap that I hated so much was now being applied to the rest of my body.

The challenge of chemotherapy is that it engulfs you; it is in you, in a way that is totally different from the pain and discomfort of surgery. It is possible to construct a mental barrier between your consciousness and the effects of surgery, but with chemotherapy any such barrier disappears. You fuse with your treatment, your blood becoming a kind of poison that reaches every part of you.

For the next couple of days the steroids kept me going but as the weekend developed I felt an acidic taste start to grow at the back of my throat, which led inevitably to sickness and vomiting. It became hard to take the pills, and harder still to eat. And my body felt distressed, as though I was permanently seasick. Then, as week three arrived, these difficulties eased somewhat and I began to relax.

The second cycle, however, proved much worse. The acid did not just enter my throat, it consumed it. The vomiting worsened and followed almost every attempt to eat. Getting each pill down was an ordeal and I would sit in a chair by the window, forcing the pills down one after another in a process that took the best part of an hour.

I was not living life in terms of days or hours but minutes, getting by almost second by second. This is the reality of the cancer fight: not some massive heroic battle but a thousand small skirmishes, tiny victories, winning the war one pill, one drink, one minute at a time. The courage of the small.

I slouched into my sofa, just fighting to get through it all, staring ahead, not able to eat, to talk much, even really to move. Gail later said that this was the worst time for her, with me lying white-faced and immobile, staring blankly ahead, a ghost.

The Marsden, quite understandably, wanted to reduce my chemotherapy protocol to make it slightly easier to tolerate. Determined not to compromise with my cancer in any way, I would not do it. But I was on the edge.

Things just kept getting worse. For the only time in the whole cancer process my spirits really began to sag. I was becoming a basket case.

Margaret McDonagh, the indomitable former General Secretary of the Labour Party, called. ‘The chemotherapy is beating me,’ I said. Margaret, who had always been the steel at the heart of New Labour, was clearly offended by this display of weakness and almost yelled at me, ‘You have got that the wrong way round, Philip. The chemotherapy is not beating you, you are beating the chemotherapy.’

I was so terrified of her that I had no option but to start fighting back.

David Blunkett called, commanding me to be strong, insisting that nothing should stop me. When David spoke it was with a power that was almost visceral. You could feel the years of adversity that he had overcome, the courage that he had shown. He certainly gave me strength.

By this time I had an array of anti-nausea drugs that could fill a small pharmacy, with new ones added almost on a daily basis. But they were not working.

One day, a Saturday, I felt in the early evening that I was losing sensation in my right arm, then my left, and soon my neck, face and mouth. I was gradually becoming paralysed. I started to panic, sure I was having a heart attack or stroke.

Virtually unable to talk, I grunted to Gail the rudiments of my position, and we drove over to the A&E department at University College Hospital (UCH), which was as packed and crowded as on any Saturday evening. I stood in the middle of the room unable to speak or to feel anything much in my face, neck and arms, swaying from side to side like a demented scarecrow. My face, Gail said, looked as if it had calcified, like a rictus.

She was behind a couple of people who had, I am sure, perfectly legitimate illnesses, but now nothing would stop her: ‘He’s having a heart attack and he’s got cancer,’ she shouted, and in a trice I was in a cubicle having an ECG and numerous other tests.

It took them just moments to establish that my symptoms were those of a reaction to one of the anti-sickness drugs. They injected an antidote. Within minutes the paralysis ebbed away and I returned to normal. UCH has been good to me, excellent in every crisis that I’ve faced.

In all of this the wound packing was still going on, with no immediate chance of conclusion. But by then Donna Louise Spencer had arrived. A senior palliative nurse at St Thomas’ Hospital, she was doing some part-time agency work and at that moment she became my saviour.

Getting through cancer needs leadership, and it can come from anywhere: receptionists, friends, doctors. It was Donna who led me through the next two weeks. She told me I was taking too many anti-sickness drugs and they should be rationed.

She was confident that there would be a symptom control consultant at the Marsden. And she found one – Dr Julia Riley, who was brilliant and took control of my anti-nausea treatment, giving me a machine that would continuously pump the appropriate drugs into my arm.

Somehow or other, I scraped through.