by Philip Gould
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.
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 occasion
s. 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.
&nb
sp; 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.