When I Die: Lessons from the Death Zone

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 hospital 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.