When I Die

by Philip Gould

  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.

  The Cancer Odyssey

  The journey to this point had taken place on many levels, and was one that had changed me in many ways – I hope for the better. I now had a different conception of myself, of cancer, of my politics, of the NHS, of my family and friends, and perhaps above all, of my wife, whom I now appreciate in new and different ways.

  Much of this journey had been personal but some of it had been political, not in the party sense but in the way I used different health systems, with different values, in different countries. This was the spine of my journey, taking me from a private clinic and private oncologist in Harley Street to an endowment hosp
ital in New York City, then back to the Royal Marsden, switching again to Newcastle’s Royal Victoria Infirmary, while often using the UCH in London.

  On my way I must have talked to literally hundreds of doctors, nurses and patients. There were real differences between the systems. In the United States the quality of care at Memorial Sloan-Kettering was outstanding but it was impossible to escape the reality of unequal access, despite the institution’s commendable efforts to widen it.

  In the British private system the quality of care was impeccable, but access to it was not free and open, and you could not avoid the sense that the real firepower of much of the private sector came from the NHS.

  Although both are NHS hospitals, the Marsden and the Royal Victoria have distinctive approaches. The Marsden generates a significant amount of its income from private patients. Newcastle, or at least the Northern Oesophago-Gastric Unit, is pretty much 100 per cent dedicated to the NHS with only the very odd exception (like me, for whom Mike claimed health insurance to fund his admirable cancer campaign).

  This does produce differences. In the Marsden there are many shared services like radiotherapy, but also some, like chemotherapy, where private and NHS patients go to different units. Despite this the values of the NHS dominate, and it is very much an NHS hospital. Private and public do work together here. In the Northern Oesophago-Gastric Cancer Unit all services are shared, and all patients treated as if on the NHS, creating a powerful fusion of excellence and equality.

  So how did they all compare? The London Clinic offered comfort, speed and little waiting. But so did the Marsden: just as fast, just as comfortable, just as little waiting, and with the knowledge that you were part of an NHS system containing numerous world-class consultants. Similarly, the private oncology was good and Maurice Slevin was excellent. But the Marsden was equally comfortable and convenient, and the consultant who looked after me had developed the protocol for treating oesophageal cancer used by the whole world.

  Finally the surgery. It is of course true that Memorial Sloan-Kettering is an outstanding institution, but when it came to my surgery the oesophagus unit in Newcastle was better. The nursing was warm and attentive, the rooms nicer, the physiotherapy and the surgery superb. This is not in any way to belittle Memorial Sloan-Kettering, which is a great hospital, only to show how good was Newcastle.

  This does not mean I believe that in health private is bad and the NHS always does better, because I do not. Nor do I believe that it is impossible for a private institution to have public values, because clearly it can – I received good treatment everywhere, private, public and mixed. But I did get my best treatment in NHS hospitals, whether as a private or an NHS patient.

  The NHS is not perfect but at its best it can be very good indeed. In many ways I started the journey an NHS sceptic, but finish as an NHS enthusiast. This does not obviate the need for reform, quite the opposite. It was reform – plus funding – that made the modern NHS possible, and as health provision faces constantly shifting challenges, the NHS will always need to adapt.

  In the modern world all institutions need to change if they are to flourish, and the NHS is no exception. But from my experience as a patient in the NHS there was little resistance to change. The fight against cancer altered almost daily, something that health practitioners seemed to know instinctively.

  The question is, of course, what kind of reform. If I was responsible for reforming the NHS, I would want to be sure of three things: that the system and the people within it were robust enough to survive the change envisaged; that those who work in the NHS were bound into the process that achieved the change; and, finally, that the driving essence of the NHS, its commitment to public service, was not weakened or harmed. That is the most important thing of all.

  But important though politics is, it is the personal journey of cancer that really matters. I have learnt that fear can be defeated and, if it is, then human possibility is unlocked; that we are stronger than we think and as we overcome what seems to be an impossible challenge then we get stronger still; that the power of community is limitless and gives us courage we did not know we had; that optimism and hope can help to defeat fear and darkness; that the human spirit within us all is more powerful and more resolute than we can ever imagine; and that although cancer is a terrible disease, it has the capacity to transform us.

  This may sound trite, but I believe it to be true. I am not sentimental about this. I know that cancer is a savage and unrelenting disease that strikes down children, young people, mothers and fathers, wives and husbands in ways that are unspeakably cruel and brutal. I know that this brutality is worse when the patient is most isolated, disadvantaged, vulnerable.

  I did not write this to praise cancer but to kill it. I want every single person reading these words, if they have symptoms of what may be oesophageal cancer and are too nervous to take the test, to have a check-up tomorrow; I want anyone who can afford it to give money to the charities listed elsewhere in this book. I want cancer over.

  But as long as cancer continues, I want people to know that, frightening and challenging as it is, they have the power within themselves to deal with it, and will come out changed and stronger. Cancer can at one and the same time destroy and transform. Why this is, I am not quite sure. Cancer is an iconic illness that seems to live and breathe in the darkest recesses of our fear. Other diseases may be more deadly and more terrible but cancer has a unique power to provoke awe and fear. Yet it is the power of cancer to transform that led Lance Armstrong to write: ‘The truth is that cancer was the best thing that ever happened to me. I don’t know why I got the illness but it did wonders for me and I would not want to walk away from it. Why would I want to change, even for a day, the most important and shaping thing in my life?’

  I would not have chosen cancer but I do not regret it. And certainly I would not have wanted to have died the person that I was before the recurrence. I believe that somehow or other in this second stage of cancer I discovered a sense of purpose that I had never found before.

  A few days ago Pete Jones, my closest friend from university, came to see me. His mother is eighty-six, and was that day undergoing the same operation that I had gone through: a full radical oesophageal resection. I had spoken to her a couple of days earlier and she was frightened, but utterly determined. Her courage was inspiring.

  I talked with Pete about this, and it was clear that his experience with her, and perhaps with me, had changed him. He had seen the power of cancer, and the transformation it could achieve. He had witnessed his mother reaching out, giving love and showing courage, and seen that a kind of viral collective power had been unlocked.

  He had not become religious, but he had discovered the power of the human spirit in facing and defeating adversity. He was caught somewhere between God and man, not believing yet not sceptical, and certain that there was a purpose to it all.

  And looking back at what has happened to me, it is difficult not to believe that running through all the extraordinary and unexpected events that occurred was some thread of meaning.

  This journey has taken me from London to New York to Newcastle and back to London, and through challenges of fear and pain I thought myself too weak ever to surmount. I may fall at the next hurdle, but for the moment the journey has been inspiring and in truth I would not change much of it.

  It is my life, revealed to me. Do whatever you can to avoid cancer, but if you cannot avoid it, be confident that you have the resources to be able to cope with it.

  Cancer is an iconic disease, but icons crumble.

  The Tall Black Cloud

  That test result in June had a disproportionate effect, offering the slightest glimpse of a future. We had no illusions about this; we knew that the cancer would return. But we believed that somehow or other we had gained an island of emotional immunity that stretched from June to December, the date of the next round of tests, a safe house on Planet Cancer.

  And so we took a break. Gail wanted a
proper holiday, Italian light, blue skies and lovely hotels. She wanted somewhere with no work and no medical intervention and where, after the miserable summer we had had so far in England, there was some sun. ‘A chill-out holiday in a very beautiful place’ was her plan.

  So on Saturday 30 July we flew from Gatwick to Naples and headed south to Positano on the Amalfi Coast, bound for a quiet, supportive retreat somewhere between sea and sky. The beautiful Le Sirenuse, overlooking the village and the sparkling turquoise waters of the bay, was her choice. This was a holiday and she was determined we were going to have it.

  And so we did. Day by day we got through. I ate a lot and once even went swimming. Gail sat by the pool and read. Sometimes we walked for half an hour in the village. In the evenings we dined and I did my best to eat respectable amounts.

  But other forces were at work. I had become determined to write down everything I thought I had learnt and had come to believe as a result of my experiences.

  I had written for The Times the long series of articles about the realities of cancer which, in a slightly different version, form the early part of this narrative. They were very well received and although I had written them quite quickly, I think they made a difference. So I decided to go on telling the story of my cancer odyssey.

  But now, like a tall black cloud hanging over the summer sea I could see from my hotel window, a new problem presented itself.

  I had agreed to update my politics book, The Unfinished Revolution. The new material was supposed to be twenty pages long. But what I wanted to add turned out to be more like 140 pages, entailing a very different commitment of time and energy.

  Unforgivably, I allowed my work on the book to intrude on the holiday. I would sit in my room, writing furiously, while Gail lay by the pool alone. What Gail had hoped would be a magical, transcendental period of peace was assailed by my almost insatiable desire to write down everything I knew.