Denise Robertson supports her son's decision to turn down cancer treatment
The Sunday Times, 30th March 2008
The broadcaster and agony aunt Denise Robertson was appalled when her son turned down all treatment for his cancer. Now, however, she believes he was right.
Life was good: I was about to be granted the freedom of the city of Sunderland when news came that I had been made an MBE. I thought about ticking the box marked “no, thank you”, because I’m a bit sceptical about the honours system, but the family all seemed pleased so I sent in a grateful acceptance.
The freedom was another matter. When it was first whispered that it might be given to me, I burst into tears. I love the city of my birth with all my heart, so to become the first woman to be made a freeman since Sunderland achieved city status meant a great deal. The day itself was made all the sweeter by having my husband and three of my five sons, plus their wives and children, at my side.
Afterwards there were photographs with John, my middle son, standing beside me holding the freedom scroll. I remember how I felt at that moment – very emotional, proud, conscious of my luck.
Less than a month later I was seeking an answer to the hardest question of my life: what do you say to your child when he is sitting in the condemned cell?
A week after the ceremony John had called in, as he often did, on his way to work. “I’ve got a funny taste in my mouth . . . and a bit of a pain just here.” He pointed to his breastbone. “Indigestion,” I said. Impossible to think it was anything else in a superfit 6ft 2in man who relished playing five-a-side and was never ill. The next day he saw the doctor; two days later he had a hospital appointment.
I knew then something was wrong: the National Health Service moves swiftly only when there is something amiss and then it is usually cancer. There was a round of consultations and tests. On June 29 John’s wife Janet rang me from the hospital: “We’re coming over on our way home.”
I knew from the tone of her voice that it was bad news and immediately I snapped into emergency mode. We would find the best place in Britain, Europe, America if necessary. I knew doctors through my charity work – they would advise me. Money would be no object.
When John walked through the door, I said: “Don’t worry, darling. This can be fixed – we’ll take you to the best doctors.” For the first and only time I saw his lip tremble: “There’s nothing they can do. You have to understand that. There’s nothing to be done.”
I looked at Janet, the most devoted of wives, expecting her to back me up. She shook her head. John had a tumour in his gullet and the cancer had spread to his lung. They had been advised that it was terminal. I argued but they were calmly determined: there was only one acceptable option – no chemotherapy, no radiotherapy, just the best possible use of what time remained. “How much time?” I asked – but they had chosen not to know.
Back then I thought this foolish, although I later came to realise that they were absolutely right. Instead of ticking away the remaining days we would move from one objective, one achievement, to another, all the while keeping the home as happy as possible for Sarah and Laura, their daughters of 14 and nine.
The next few weeks were the most painful of my life. I had confronted cancer before: my first husband, Alex, had died of lung cancer but until the last second of his life we had clung to the hope of recovery. Now I was being forced to face a reality that I could not bear. Without hope there seemed nothing to hang on to.
The first few days were a blur as we made arrangements to close down the driving school that John owned and to reimburse clients who had booked courses. He had revelled in being his own boss after spending nine happy years in the Royal Navy; now his working life was over. It was heart-wrenching to watch the dismantling of a business he had painstakingly built.
His four brothers rallied round; David and Peter, who both live in the south, crisscrossed the country in their attempts to help. I feared most for the effect that John’s illness would have on Philip – so close to him in age as almost to be a twin – but he was amazing, silently doing every task that presented. Mark put himself in charge of Domino, John’s dalmatian, taking him on the long walks he had enjoyed with his master but which John – now increasingly breathless – was unable to manage. Domino couldn’t understand why life had suddenly changed. Neither could the rest of us. Mark exploded in anger. “They were so happy,” he said. “It isn’t fair.” But it was that very happiness which consoled me. With Janet and the girls, John had indeed known supreme happiness. That is not given to everyone.
I found myself faced with the dilemma of whether or not to mention what John was going through. I work on the ITV programme This Morning and I am connected with a number of charities, so I meet people – crowds of them – every day. But now, when they asked the ritual “How are you?”, I would hesitate.
How was I? Well, I was distraught, but you can’t admit that to casual acquaintances or people you’ve just met. If I unburdened myself and told the truth, I knew I would feel a fool. If I said nothing or answered with the conventional “Fine, thank you,” I would feel a fraud. I couldn’t win. So at first I told nobody what was happening. But, eventually, I did occasionally try to explain – and a most peculiar thing happened. As soon as I had told someone I would be engulfed by shame. Why had I told such an unforgivable lie? It was the same feeling you get in childhood when you have told a fib about your father’s job or about where you are going on holiday, and then you suddenly realise that you are bound to be found out.
Except that this wasn’t a lie; it was a terrible truth – so why did I feel guilty when I spoke of John’s illness? The mind, I discovered, can play tricks on you when you are under stress.
And the reactions of some people saddened me. John – like David, Philip and Peter – is my stepson, while Mark is the child of my first marriage. When I said: “One of the boys is seriously ill,” there would be a swift intake of breath and then: “Which one?” When I said “John”, they would reply “Oh” in a relieved tone of voice. As long as it wasn’t my “own” son, the news wasn’t as bad as it might have been. But I had been John’s stepmother for 32 years. Had they no conception of how love can grow?
Only one thing was easier than I had feared. I had wondered from that first moment how I would talk to my son without breaking down. That worry was without foundation. He made it so.
It is a strange feeling when your child holds you up rather than the other way round. The boy I had reared was now a man and a brave one. When I arrived at his house or Janet brought him to see me, I would kiss him, something I had not usually done since he’d grown up. He would accept that and then begin to tell me something about his beloved Sunderland football club, or the weather, or what the children had done at school. The ice broken, I could prattle away. As he grew weaker I would sometimes murmur “I love you” as we kissed goodbye, but that was all. Neither of us could afford to display emotion. If he cried, he cried alone or with Janet, who sustained him.
I was still working; but without my colleagues Fern Britton and Phillip Schofield I couldn’t have managed it. They were incredibly kind, but it was more than that.
Being a presenter on live television is akin to being a trapeze artist: you need to be sure of a safe pair of hands if you fall and need catching. I was more in need of that certainty than ever now and in Fern and Phil I had the safest hands in the business.
The warmth of the phone room, the nerve centre of This Morning, closed around me. The make-up department lifted my spirits. Tim the floor manager would take my arm if I stumbled in the studio. Cups of tea appeared every five minutes. I was being watched over and it helped.
Two weeks after I’d received the news about John, This Morning ended for its summer break. As usual, we were going out with a bang. It was sunny. We were out on the Embankment and crowds were gathering to watch the filming.
I was supposed to be keeping score for some wacky races and I did my best, but I can’t remember what else was in the programme. Eventually it was time for the rousing finale. I felt seriously weird, almost as though I was watching myself take part in a charade, but at last it was over and I could go home.
Back at John’s house a helpful Macmillan nurse had arrived, but the NHS appeared to have washed its hands of him. He was prescribed pain relief, which Janet administered every few hours, and I could see the anxiety in his eyes. Would the drugs kick in before the pain intensified? There was no other treatment; only widely spaced appointments to chart the progress of the disease.
We agreed that John and his family needed a break. So we found a hotel in Yorkshire with a swimming pool for the children and off they went. That week the summer weather went berserk. Gales, sheeting rain . . . I sat thinking of them, penned in the hotel with their thoughts, and I wept. Sometimes it can seem that the gods are against you.
Soon after their return I arrived to find John sitting in the living room. “See what’s next door,” he said, gesturing towards the dining room. He sounded quite pleased and I went to look without a trace of apprehension. It was a wheelchair. The boy who had once played football every week was now reduced to a wheelchair – and he was taking it better than me. “Very nice,” I said, coming back into the room. I couldn’t think of anything else to say.
He was growing rapidly weaker, something I had not expected so soon. I started to be fearful about how his life would end. It did not help that when I told people the diagnosis, they would shake their heads in despair. Some would even purse their lips and say: “Oh dear, is that what it is? It’s a terrible end.”
I tried to be sensible but terror was overcoming me. Then one day I had a telephone call from Andrew Cant, the professor who heads the Bubble Unit – which exists to save children born without an immune system who would otherwise die in the first year of life. As president of the charitable foundation that supports it, I had always admired Andrew’s medical skills. Now he was ringing to ask if there was anything he could do.
“I’m frightened,” I told him. “I’m worried about how it will end.” There was a pause and then he said, very quietly but firmly: “I would be very disappointed in my own profession if they didn’t make sure that it ends peacefully.” Coming from a physician I didn’t know, I might not have believed those words. Coming from Andrew, they could be trusted completely.
Meanwhile, my distress was compounded by the quagmire of form-filling into which Janet had been plunged. Applications for the benefits to which they were entitled were so complicated that you wondered how anyone, even with a PhD, ever completed them. Five weeks went by without a penny forthcoming, even though John’s income had ceased on the day he was diagnosed.
At one stage Janet was told by the social security office: “The trouble is, he’s not on our system.” What a crazy world it is when the fact that you have never previously missed a day’s work in your life renders you disadvantaged.
John was surrounded by a loving family that was reasonably affluent and ready to help, if necessary. He had been provident with money. But what if he had not been? How do you feed two children for five weeks on thin air while the applications are stalled in the system? There must be a better way.
Another short break was planned, this time to the shores of Loch Lomond. The family car was packed with wheelchair, medical supplies and the oxygen cylinders that now accompanied John everywhere. After they had left, I held my breath and watched the clock until the call came. It was John, ringing from the balcony above the pool. “The girls are in there already,” he said. He sounded really happy.
At around this point I started feeling physically weak. The legs that had allowed me to sprint across King’s Cross station to be first in the taxi queue had difficulty carrying me across a room. I felt old and fragile. The effects of ageing had never previously crossed my consciousness; now they appeared to have come upon me almost overnight.
I was dithery. It was harder to concentrate. Letters were pouring in, some congratulating me on the freedom or the MBE, others commiserating with me over John’s illness. I watched them mount up but made no move to acknowledge them. What could I say: “Yes, it’s great about the MBE – did you know that my son is dying?”
For years I had received letters from bereaved parents, all saying that this was a bereavement like no other. I had only half-believed them. Now I knew they spoke the truth. Losing your parents is heartbreaking, but it is also in the natural order of things. Losing a partner is devastating for, in addition to the agony, you also lose your way of life. But there is a subtle difference about losing that next link in the chain, the child you have nurtured and brought to adulthood.
I had not given birth to John, but I couldn’t have loved him more if I had – and now I was losing him. However, I knew I couldn’t give way. The family needed me to be strong; they didn’t need someone obsessed with her own pain. So I kept smiling, and I kept working – which was my only escape.
Things then took a turn for the worse. John was having difficulty swallowing, which distressed him. “I can’t even swallow my own saliva,” he told me. They took him into hospital and a stent was placed in his throat. The operation was effective, the medical and nursing care impeccable, but my anxiety for him was mixed with rage.
Someone visiting a patient with terminal cancer should not have to worry about finding change for car parking, as Janet continually had to do, or worry about being clamped if the ticket expired. And it was a disgrace that John was kept waiting on a trolley in a corridor for five hours – without pain relief or food – because there was no bed, and might have stayed there even longer if Janet had not demanded action. It certainly would not have been tolerated in the days when I worked in the NHS as a medical secretary.
Watching Janet surmount every obstacle was proof that a loving marriage can conquer everything. At one stage, I said to my husband Bryan: “If John said he wanted to scale Everest, she would strap him to her back and start climbing.” She had always been quiet and pleasant, even self-effacing. Now that she needed to be forceful, she was unstoppable.
The summer was coming to an end and one more expedition to Loch Lomond was planned. I know now that Janet and John used their time in Scotland to plan for a future when he would no longer be there. He had always had a passion for detail and I’m sure he derived pleasure from working out how best to protect his loved ones with a plan that he knew Janet would execute. When they came home, it was obvious that there would be no more excursions.
As always, we arranged to hold our annual summer family day, when we all come together and a picture is taken of the entire clan. Now, of course, there was an added significance: it would be the last photograph with John.
When the time came for it to be taken, he insisted on getting out of the wheelchair. Slowly and carefully, he made his way into the garden and stood beside me. I smiled for the photographer, but I felt as though my heart would break.
Word came that my investiture was to take place on November 2. I could take three guests: my husband, of course, but who should the other two be? Could John manage it? When I asked him, he shook his head: “I want to come, but what if I can’t make it at the last minute? You’ll have wasted the ticket.”
Thinking about the protocol, the police checks, all the red tape that surrounds royalty, I wasn’t at all sure the palace would tolerate a last-minute switch. But when I rang the relevant office, expecting a refusal, I was told: “Of course we can change the ticket, if we have to, but let’s hope we don’t. We’ll arrange for you to come in by another entrance to accommodate the wheelchair.”
I rang John to tell him it was all arranged. The next moment the phone rang again. It was the palace. “I’ve been talking to my colleagues. . .” Clearly, protocol had won; that first kind response had been overruled. But the voice continued: “We think you should bring another son, anyway. We’re sending another ticket.” When I put down the phone, I cried. Kindness ruins your self-control.
London hotels and trains had been booked to accommodate John’s chair. Janet had arranged for oxygen to be delivered to the hotel; everything was in place. The day before our planned departure, she rang me: “I don’t think he can make it.” Philip, Mark, Bryan and I went down by train later that day. I watched the landscape unrolling – the remnants of summer crops, the ploughing and replanting. The cycle of life is sometimes hard to accept.
We reached the courtyard of the palace as a car roared in, with Princess Anne at the wheel. Later I would learn that the Queen had gone down with sciatica and the princess had been hastily summoned to take her place. As we proceeded to the room where the investiture would take place, two officials came up to me separately and whispered: “Did your son manage to make it?” They had remembered.
I had always thought Princess Anne aloof, but as I walked towards her and made my curtsy, she smiled at me: “Strange to see you here and not on television. And 34 chari-ties! You obviously share my chronic inability to say ‘No’.” I could only marvel. Called in at a minute’s notice and still she had mastered her brief.
Soon after the investiture there was a rapid deterioration. Again there seemed to be little help from the NHS. Increasingly I was feeling that from the moment the diagnosis was made, John had been written off.
Now he no longer got out of bed, but he still smiled when you arrived and listened attentively to any scrap of news. The children were quieter: they knew he was very ill but nobody broached the subject of death. My view was that children cope better with the fact of death than the anticipation of it. I haven’t changed my mind.
One day Janet rang me: “He wants to go into hospital.” An hour later she rang again. A bed had been found for him in a hospice where I had worked as a girl.
I drove over and found him installed in a room, admiring the television at the foot of his bed. Technology had always fascinated him; one of his favourite teases was about my inability to master anything that had more than on and off switches. He tried out the new television, decided it was a good one and settled back on his pillows. The room was quiet and peaceful, a cocoon against the outside world. Nurses came and went but there was no sense of bustle. Janet whispered in my ear: “This is paradise.”
“I’ll bring Domino in to see you tomorrow,” I said. When I rang a few hours later, John was resting. Everything was fine. I went to bed, but I was still awake when the phone rang. The nurses thought I should come. John was unconscious now and Janet needed support.
I was there in 20 minutes. He looked as though he was sleeping and she was holding his hand and murmuring to him. I took his other hand and so we stayed, through the night, while his breathing slowed.
When he was a boy, he had begged me to stop him biting his nails. I painted them with some foul-tasting liquid, but he developed a liking for it. You could always rely on John to defy the norm. Now, the hand I held was the hand of a 44-year-old man, its nails unbitten, but he seemed to have shrunk in the bed, only the length of his legs a reminder of the tall man he had been.
He died just before 6am. And it was the untroubled end that Professor Cant had prophesied.
I kissed him then and tiptoed away. The nurses who had come and gone so quietly through the night, bearing cups of tea, easing pillows, administering drugs, were waiting in the corridor. “He’s gone,” I said and they put their arms around me. If I had the power, I would build a hospice on every corner.
Arm in arm, Janet and I went out into the hospice grounds. It was November 22 and still dark, but the birds were already singing in the trees. We didn’t speak. What was there to say?
Two nights later I kept a promise to attend the launch of a scheme to help prevent suicide in young men. Bryan begged me to send my apologies but I thought it was important to go. When you lose someone you love, you need to know that they were important, that their death mattered.
Like the parents who were behind the scheme, I had lost a son – although my wound was a clean cut while suicide can leave a jagged edge. I was supposed to do the consoling that evening. In the event, it was those mothers and fathers who consoled me.
Slowly life returned to a kind of normality. On This Morning, I had to deliver my usual Christmas message, trying to offer something to people whose Christmas, for one reason or another, could not be merry. I had done it 18 times before. This time I would know exactly how it felt to be on the other side of the camera. I managed. Then came the usual finale. A band was playing, we were all swaying along to the music. As my legs give way, I felt Phillip Schofield’s arm come round me and we swayed together till the credits rolled.
At home I prepared for a Christmas that I was dreading, but which the children needed to happen. We laughed and cried and Christmas came and went. New year was harder. My mind was up to tricks, filling me with the notion that I would be leaving John behind in the old year. I wanted to cling to 2006 as long as I could.
At last the chimes rang out: it was over and suddenly I knew that nothing – not even the passage of time – can take away memories. I will always see John’s face at the kitchen window – upside-down because he was hanging from the roof – the young sailor home from the sea, the beaming bridegroom, the loving father, the clever man who would patiently explain for me the intricacies of Sky+. Those pictures are safe in my head and will be there for ever.
A year on, I am back to normal physically although I tire more easily. I cry sometimes and have to avoid some music because it stirs memories. I sometimes find myself saying: “I must tell John about that.” The family are gradually taking up their lives again and, when we meet, there is the old jollity. But nobody forgets.
