It was dark by the time I got to Linda’s. I’d been her GP for seven years but this was the first time I’d been asked to visit her at home. I retrieved my bag from the boot, put my hood up against the wintry drizzle, and made my way across the sward that separated her house from the road. My shoes swished through the wet, uncut grass. On summer evenings, children from some of the other old Somerset miners’ cottages would be out playing; their own private rec. Tonight it was deserted.
Trevor answered my knock.
“She’s through here,” he said, ushering me into the warmth of the small hallway.
Linda was sagged in a sofa that had been squeezed against one entire wall of the compact living room. In the time it took to greet her, I noticed that her skin was sallow, even allowing for the artificial light. And every now and then, one of her arms or legs would jerk involuntarily. She managed a weak smile, but her eyes were dull and distracted – preoccupied by something more vital than social niceties.
I perched beside her, my hand reaching for her wrist. Cool. Pulse fast and thready.
“What’s been going on?” I asked. The message left with reception suggested she’d contracted a stomach bug, but Linda was far more unwell than that.
Trevor was standing in the doorway, half-in and half-out of the room. He gave me the bare bones. Linda had been home from hospital just a few weeks, and was having terrible trouble with her stoma – the opening in her abdominal wall where her bowel now discharged following her recent surgery. It was continuously pouring out high volumes of liquid stool despite the drugs intended to counter this. Linda and Trevor found it hard to keep up with the frequent bag changes, day and night. The past few days she’d been feeling very nauseous, and yesterday the vomiting had begun.
I clicked open my bag while Trevor was speaking and took out my sphygmomano-meter, not voicing the question uppermost in my mind: why take so long to call? The meter showed Linda’s blood pressure to be half what you might expect for a woman in her mid-sixties. While I was measuring it, a couple more jerks animated her limbs, as though she were being tugged by an impatient puppeteer.
“I’m really sorry, Linda,” I said, “but I’m going to have to readmit you.”
She’d let Trevor do the talking until this point, but now she let out a groan. “No, please,” she said. “I’ll be all right.”
I explained that she wouldn’t; I said I thought her kidneys had shut down as a result of dehydration. Now that vomiting had set in she was on a one-way street. “If you don’t go back in, you’re not going to make it.”
“I can’t,” she said. “I just can’t face it.”
“Come on, Lin.” Trevor’s voice had a trace of suppressed panic. “It’ll be all right. It won’t be for long.”
Still Linda shook her head. What should have been a routine, if substantial, operation to remove a bowel tumour had been beset by complications. She’d ended up staying in hospital for near enough two months, lurching from one crisis to another: return visits to theatre to deal with post-operative infection; severe pneumonia and sepsis; in and out of high dependency and ITU; needles and drips and surgical drains; to say nothing of her radically altered body image and the indignities of a malfunctioning stoma. She’d been battered until she’d long passed the point of caring, and then she’d been battered some more. Finally making it home had been a watershed, an end to the whole torrid saga.
Now I understood the delay in seeking help: she was afraid. You might think that if a doctor told someone they were dying, and that going to hospital offered them a chance of life, they would jump at it. You might think that someone like Linda, who had gone through so much to try to be cured of cancer, wouldn’t throw it all away at the 11th hour. You might be wrong.
The language of cancer echoes that of war: fights and battles, bravery and resistance. But, like soldiers, patients can develop shell shock. The strength of their reactions can be overwhelming, making re-engagement with the enemy impossible. Sometimes surrender seems the only thing to do.
****
I remember the words he said, and the way he said them. I must have been about 13. My mum and my brother and sister were out. It was just Dad and me at home.
He came and found me. Or maybe he just came across me. For some reason, I think I was sitting at the bottom of our stairs. I may well have been: it’s where the phone was in our house back then, so I might have just finished chatting to a friend. Wherever I was, what burns bright in my mind are his words, and the catch in his voice: “Phil. I think the cancer’s come back.”
He’d been to the loo, he said. But instead of a normal bowel motion, there had been a mess of bloody diarrhoea. Looking back these 38 years later, I understand that he would have been terrified. I can see why he would have felt suddenly, awfully alone. Why he had to tell someone, whoever was around. That need would have been overwhelmingly urgent – the need to have someone connect with him, understand his fear, touch him and tell him they were sorry and that they loved him and that they were sure it was going to be all right. But at the age of 13 I didn’t understand any of that. All I saw was my father, panic-stricken. I didn’t really know what cancer was. Nor did I know what it would mean if it had come back. I think it probably scared me, seeing him like that. Maybe, in the blinkered egocentricity of adolescence, it repulsed me a little.
I don’t remember touching him. I certainly didn’t tell him I was sorry and that I loved him. I didn’t know what he needed, not back then. I didn’t know what to do.
****
The Whitakers on a visit to the playground. Phil is seated on his father’s lap. Credit: Courtesy of Phil Whitaker.
Ever since modern medicine conquered many of the dreaded infectious diseases such as pneumonia, smallpox and diphtheria, which used to end so many lives prematurely, cancer has become our most feared adversary. By the time primary tumours announce themselves by causing symptoms, it is often too late to effect a cure. Whether we know it or not, by then the patient is often in the unyielding grip of an aggressive disease that will not be eradicated. By then, hidden deposits called metastases are often seeded elsewhere in the body, silently beginning their work of destruction.
For a long time, surgery was the only weapon doctors possessed with which to fight back. Cancers would be cut out; occasionally that proved effective, but much more commonly the disease would soon recur. Wider, more radical excisions were developed in the hope of clearing tumours once and for all. Recurrence still proved a problem, and those patients who did survive paid a heavy price in terms of the mutilation caused by the surgical cure.
The development of radiotherapy in the early 20th century, and chemotherapy in the 1950s, expanded the therapeutic arsenal and enabled less drastic surgery to be performed. These treatments certainly improved outcomes, but survival rates for many tumours remained fairly poor. And the balance between treating the cancer and poisoning the patient is perilously fine. Unlike infectious disease, where antibiotics target cellular mechanisms unique to the foreign microbe, cancer is comprised of our own cells turned insurgent. Both radiation and chemotherapy drugs kill cancer cells, but they kill our normal tissues, too.
[See also: Now that I have cancer, how should I live?]
Gradually, as the discipline of oncology advanced and different tumour types and stages became systematically classified, it became clear that the defining characteristic of cancers that proved ultimately to be cured was how early they were caught. The way round having to wage such a blitzkrieg on the patient’s body must be to detect tumours earlier, well before they had announced their presence by causing symptoms, and well before the process of meta-stasis had occurred. The hunt for effective screening tests was joined.
Where screening has been possible it has improved cure rates. But it has also generated some surprising findings, which have demonstrated that cancer is a far more complex process than we have hitherto realised. Mammography, for example, picks up many more tumours than would be expected from what we know of breast cancer incidence. The inescapable conclusion: by no means all cancers detected by screening will actually go on to become the life-threatening disease we so fear. Estimates vary widely, but most doctors now accept that of every three tumours detected by mammography, only two would have gone on to present as cancer.
Such “overdiagnosis” is a feature of all tests that seek to detect cancer early. Until we have a better understanding of how to identify which screen-detected tumours can safely be left alone, we have no choice but to subject significant numbers of patients to aggressive curative treatment who may not actually need it. But the phenomenon of overdiagnosis may also offer valuable insights into the factors that enable tumours to cause clinical disease. It seems likely that our immune systems are able to counter or contain many tumours – many of us are walking around with cancers that we don’t know about, which will never do us harm. Only once a cancer has acquired the capacity to evade immune system control – or when some other illness, adverse life-event, or medical treatment causes the immune system itself to become suppressed – only then does the disease we have traditionally thought of as “cancer” begin to take hold.
****
Dad’s was a testicular tumour. He noticed it when I was about 20 months old. Because of its superficial location, men often find an untoward scrotal lump at an early stage, whereas cancers developing deep within the body are frequently advanced by the time anyone is aware that they are there. He was swiftly admitted to hospital, where an operation removed the affected testicle along with the primary tumour.
The patient in the bed next to Dad when he was recovering from surgery was dying from an advanced bowel cancer. The memory of his wasted, jaundiced body; the pain he was in; the vomiting and the loss of dignity and control, haunted my father. As did the memory of the bloody diarrhoea that poured out of him. Within the five years prior to his own diagnosis, Dad had lost both his parents to different forms of the disease. It must have felt to him as if cancer was everywhere around, inexorably destroying anyone it touched. And now it had come for him, too.
By the time of Dad’s diagnosis, radiotherapy had become well established as an adjunctive treatment. Testicular cancers are usually exquisitely sensitive to radiation. After he’d got over his operation, Dad underwent a series of irradiations of the abdomen – a field encompassing the regional lymph nodes to which testicular tumours commonly spread, the aim being to mop up any metastases that may have broken away from the primary tumour and seeded elsewhere.
He had every prospect of being cured. But no one could tell him if he had been. Treatment over, he spent year after year living with the knowledge that, any day, some symptom or sign might manifest to mean that his cancer had recurred.
****
Vince was angry with me. A few months before, he had consulted me about a niggling ache just below his ribcage. He worked in sales and spent hours behind the wheel – the discomfort was very recent and only came on when doing long stints of driving. I couldn’t find anything to worry about when I examined him, and he being just 40, there was unlikely to be anything much going on. So I suggested we give it a bit of time to see if it would settle down. We left it that he would come back two or three weeks later if it showed no sign of resolving.
I was away on leave so it was a colleague of mine, Simon, to whom he returned. Simon wasn’t too concerned either, but given that things hadn’t settled spontaneously, he did what I would have done and arranged an ultrasound scan just to be sure. It identified a tumour on the right kidney.
The NHS moves fast when cancer is found: Vince was swept up by the system. A CT scan showed that the cancer had already spread. Although the primary tumour was due to be removed surgically, and subsequent chemotherapy would knock back the secondary deposits, the urologists had told Vince that a cure was not going to be possible.
Now Vince had come for a follow-up. He kept his gaze averted for much of the consultation, rarely meeting my eyes. I told him how sorry I was to hear the news. I sorted out certification to take him out of work while treatment proceeded. I made some tentative enquiries as to how he was coping. His replies were curt, bitter. The air between us crackled with undischarged electricity. I knew what was going on: he believed that if I had arranged the ultrasound the first time he came, the cancer would have been caught earlier and a cure might still have been possible.
I would have liked the chance to explain. To tell him how many patients we see with vague symptoms that don’t appear to have any underlying cause. How so often these resolve without intervention, and prove to have been nothing more than a muscular ache, or a bit of bowel irritability.
Time is what we use: if there’s nothing definitely wrong on first presentation, the passage of a few weeks will often see the symptoms settle down. And for those rare patients like Vince, where a nebulous discomfort proves to have been the first indication of serious trouble, a couple of weeks’ delay in diagnosis won’t have made any difference to the outlook. His tumour will have been growing for years; the metastases now visible on a CT scan will have long since occurred.
I wanted to explain all this, but I couldn’t force it on him – to do so would have been self-indulgent, me justifying myself. It had to be him to raise the subject – him to tell me outright that he thought I had let him down. In a way, I was surprised that he had chosen to come back to me, that he didn’t continue the journey with Simon. I assumed it was because he wanted to have it out with me.
It was when I asked how things were at home that the grief came. Vince said he had three young children whom he would now never see grow up. And his wife. How was she going to cope when he’d gone, trying to help with the kids’ devastation while struggling with bereavement of her own? I sat and listened, my heart going out to him. There was nothing I could do to make it better; he just needed someone to hear and understand. He talked about memory boxes, about recording videos of himself for the children’s futures. The ideas sounded puny when set against the monstrous juggernaut bearing down on him – when what he was screaming for inside was not to have to face it at all. But they were things for him to cling to, concrete tasks he could set himself so that he could feel he wasn’t going to be completely erased from his family once he had gone.
It was a long consultation, and gradually the pent-up charge in the air seemed to dissipate. We ended with a firm handshake and meeting each other’s eye. I wished him good luck with the operation, and encouraged him to make contact once he’d been discharged. After he’d left, I spent a few minutes alone before calling the next patient through. Maybe Vince hadn’t been angry with me at all – anger is such a common emotion when we’re faced with life-threatening news. Perhaps it was my own sense of guilt at not getting the diagnosis when he first came – even though I knew it would have made no difference – and I was assuming the anger I was detecting was directed not at his situation, but at me.
Actually, I knew it was – Simon had forewarned me as much. But I think it was the fact that I had sat and listened and allowed him to express his fears that had changed things between us. We had connected in his shock and grief.
[See also: Edward Docx: The peak]
My dad was even younger than Vince, just 35, when his testicular tumour came to light. He also had three young children and a wife. There was the fear he would have felt for all our futures. The hope he would have clung to that the doctors’ pronouncements of the possibility of complete cure would somehow come true. The anxiety of those early years, living under the constant threat of recurrence. He was often tense during my younger childhood, unable to cope with the noise and mayhem caused by us kids. He used to retreat to his bedroom; I could hear the relaxation tape playing in there, the soothing voice of the therapist encouraging him to clench then let go of the various muscle groups around his body in turn. I didn’t know what it was all about, not back then. I just hated the way he would blow up when things overwhelmed him, and I viewed his fragility with faint disdain.
Phil Whitaker’s career has seen the start of a
new generation of cancer treatments. Credit: Tom Pilston for New Statesman
It was to be David’s last Christmas – he and his now grown-up children all knew. Grandchildren were mustered from different parts of the country, their parents warning them that Grandad wouldn’t look like he used to. What had started as a tiny skin cancer overlying his jaw had come back again and again. Increasingly radical and disfiguring operations, radiotherapy and skin grafting had been deployed, but still new islands of tumour would erupt. The surgeons and oncologists had recently declared that there was nothing further they could do.
Some of the cancers were now open craters and sores; David’s battle-scarred face was permanently half-hidden beneath sanitising dressings. He had maybe a few months before the disease would cause some fatal event to occur. The whole clan assembled to enjoy – and to gift him – one last family Christmas. Handmade cards were crafted; his eldest grandchild practised how to play his favourite carol on the guitar. Memories were made; memories were shared. Then the family dispersed again, back to the lives they had to run, braced for what they knew would shortly come.
It was Peter, his eldest son, who tracked down the clinical trial. The power of the internet. French doctors, seeking to recruit patients just like David: those with end-stage squamous-cell skin cancer for whom no further conventional treatment was possible. The patients couldn’t be too far gone, though; they had to be fit enough to travel and to undergo experimental treatment. Thankfully, at the time Peter discovered the trial, David was still within this narrow window. A month or two later and he would have been too ill.
So, trips on the Eurostar every three weeks. After the first few treatments, David’s tumours started to regress. Another four cycles and all open wounds had fully healed; tumour deposits in the lungs previously visible on scans had shrunk considerably. Bandages and dressings were discarded. Precious energy had in part returned. There is going to be at least one more Christmas for David and his family, maybe more. How many, no one can say. This is the forefront of medicine, finding out how much time these new drugs might buy. Or if, conceivably, they might even be cures.
I qualified nigh-on three decades ago, and most of my career has spanned an era in which surgery, radiotherapy, chemotherapy and some hormone manipulations were the only tools we had with which to battle cancer. Now, we’re on the cusp of a new generation of treatments. The field of molecular biology has been gradually revealing the mechanisms by which tumours spread and grow – how they generate new blood vessels, for example, to feed each metastasis, a process known as angiogenesis. And, crucially, we are also beginning to understand the tricks that cancers employ to evade immune system control.
The drug that has transformed David’s prognosis is a form of immunotherapy – a broad term for treatments that restore or enhance the ability of the immune system to attack cancer cells. He has responded spectacularly; his immune system has wasted no time in bringing his tumours back under control.
There is fevered activity worldwide to exploit the power of immunotherapy. Drugs like the one David has been receiving interrupt the processes by which malignant cells fool the immune system into leaving them alone. Others, once bound to the surface of tumour cells, act as beacons, attracting white blood cells to attack. Still others, spliced to conventional chemotherapy drugs, can deliver lethal doses right to the heart of a cancer, while minimising exposure for the patients’ own healthy cells.
Some immunotherapy drugs have passed clinical trials and are now deployed in routine practice. They are very expensive at present, and their use is generally reserved for when conventional treatment has failed. Over time, though, the costs will come down, enabling more widespread use. They’re not without side effects, and many are effective in only a limited range of cancers, but for the first time since I qualified there is a whole new class of treatments to bring to bear on our ancient foe.
****
Dad was wrong. There was a flurry of appointments with the gastroenterologists, but the bloody diarrhoea that he had feared indicated his cancer had returned proved to be something else entirely: colitis, an inflammatory condition of the bowel, possibly a late complication of the radiotherapy that had helped to save his life in the late 1960s.
He survived to see his children grow up and become a computer programmer, a teacher and a doctor. Grandchildren were born. He kept working as a civil servant for a number of years, but the combined toll of his physical and psychological traumas eventually led to early retirement. Freed from the stresses of commuting and work, he went on to enjoy perhaps the best period of health he had known for decades. Even the colitis miraculously resolved.
I was a partner in a practice by the time new difficulties arose. The skin over the bottom of his back – in the area of his old radiotherapy field – started to break down and refused to heal despite a plastic surgeon’s best efforts at grafting. Then a routine blood test picked up a problem with his liver. An ultrasound scan found extensive metastases. A biopsy revealed an aggressive, poorly differentiated cancer that might have arisen originally from squamous skin cells. It’s a long-recognised problem with radiotherapy: some 35 years after treatment, the radiation that once saved a life can prove to have caused a new cancer to form.
****
Vince surprised me by being on something of a high. He actually sounded excited, filling me in on events at the hospital. With his primary kidney tumour removed by the urological surgeons, he had been sent to the oncologists for further treatment. And the news they had given him was far better than he had originally feared. His standard chemotherapy regime was going to be augmented with a relatively new drug that should block angiogenesis, starving his metastases of a blood supply. The oncologist had hinted at other hopes to latch on to; should this fail to control his cancer, there was the possibility of using immunotherapy. There are ongoing clinical trials which might bring promising drugs on stream in the coming years.
Vince had been on the internet, reading about the kinds of agents currently in the pipeline. He can see a future mapping out in which his current treatment buys him sufficient time for new therapies to come along. Each time his cancer develops mutations to get round the effects of one drug, there may be another available to bring it back under control. Perhaps, in time, there might even prove to be a cure. The prognosis is still guarded, Vince told me, but the oncologist has been talking in terms of years. I smiled back, infected by his upbeat tone. He can see himself being around to enjoy family life for a long while yet.
Vince shook my hand again when he came to leave. His grip felt strong. All thought of the few weeks’ delay in arranging that first ultrasound scan had been set aside. The spectacular advances of the new era have given Vince a big dose of that most precious of medicines: hope.
****
I finally found a form of words to help Linda, slumped and traumatised and utterly exhausted on that sofa in her cramped old miners’ cottage. I talked about how she had been tackling an assault course – perhaps the worst assault course in the world – and how she had surmounted what she’d thought would be the final obstacle and made it home. But just as she’d turned the last corner, expecting to see the finishing line, there proved to be one more sheer wall in her path.
And yet… on the other side of that, there was the finish line. I don’t imagine that was solely what decided her; Trevor’s increasingly desperate encouragement will have carried more weight. But that picture of a gruelling assault course made her feel understood and gave her a mental image with which to summon the courage for one last push.
On admission, her kidneys were indeed seen to be in acute failure. As a result, a salt called potassium had accumulated in her bloodstream to dangerously high levels. This could have sent her heart into a fatal rhythm disturbance at any moment. But with careful fluid and insulin therapy in hospital, her kidneys were revived and the dangerous potassium excess brought back to normal. She was back home with Trevor within a matter of days.
Her stoma was reversed by a further operation the following year, but that failed to resolve the high-output bowel that had caused her such problems. She’s seen any number of specialists, trying to find an answer to the intractable diarrhoea and faecal incontinence that subsequently ensued. Finally, and very much as a last resort, a consultant at the continence clinic recommended she try a probiotic dietary supplement used to help patients with inflammatory bowel disease. It isn’t perfect, but it has improved things to the point where she’s now able to get out and about without the fear of soiling herself if she can’t immediately get to a loo.
It’s now more than five years since her original surgery for the bowel tumour, long enough for us to be reasonably confident that she’s been cured. Even in the worst case, should the cancer rear its head again there are now both conventional chemotherapy and newer agents that can be used.
****
We’ve just marked the 15th anniversary of Dad’s death. He saw an oncologist with the result of the liver biopsy, who said he could give him some generic chemotherapy that had about a 20 per cent chance of buying him a few more months, albeit any extra time gained would be marred by the side effects of treatment. Bravely, after weighing the pros and cons, he decided it wasn’t worth it. He returned home and prepared to die.
I was no longer that ignorant 13-year-old boy. I told him I loved him more than once, and touched on the things about him that I admired – what a great job he’d done as a father to us in spite of everything he’d been through. Our relationship had never been entirely easy; the health problems he’d endured had made it so. I didn’t say goodbye in the way I would have liked. But at least I knew what to do.
We gathered the family for one last Christmas, all his grandchildren too. He was still in reasonably good shape – it would be some months before the cancer overwhelmed him. Memories were made; memories were shared. I knew he dreaded what was to come, that he was haunted by the memories of that wasted man dying in the bed next to his, 35 years before.
We were all still down there shortly after New Year. I went from our rented holiday cottage to be with him when his GP came round for a review. After his doctor had gone, he wanted to sleep – he’d had very little the night before. Mum and I stayed talking in the sitting room for a while, then I decided it was time to head back to rejoin my brood.
I’d left my coat on the hook on the back of his bedroom door, so I crept in quietly so as not to disturb him. I glanced across to see if he was stirring, and instantly recognised that he had gone. A heart attack, probably, while he was fast asleep; he wouldn’t have known a thing. He had been spared the drawn-out death he had so long dreaded. And I was on hand to break the news and to support Mum.
****
It is such a truism that it has become a cliché: the wounded healer. The child, exposed to serious health problems in his or her family, growing up to enter the caring professions, the unconscious driving us as adults to try to put right everything that in childhood was so wrong.
Reading an update article on the new generation of cancer treatments by a world-renowned professor of oncology in London, I was not surprised to find that he, too, had a father who had suffered from cancer. It had inspired him to enter the field, and set him on the course of his life’s work. His particular interest is in cancer vaccines – using extracts from tumours to create inoculations that will stimulate a vigorous immune response when injected back into the patient: a different form of immunotherapy.
Elsewhere, researchers are attempting to exploit nanoparticle technology as a way of infiltrating chemotherapy drugs directly into cancer cells, sparing normal tissues from toxic side effects. The burgeoning field of DNA editing – making precise changes to the genes that orchestrate cell biology – is helping scientists to investigate cancer mutations under laboratory conditions. It’s a long way off, but one day this technology may offer the prospect of repairing or neutralising key genetic changes that give cancers their malignant potential.
I wonder sometimes if I haven’t failed to find the right vocation. The branch of medicine I went into – general practice – has little to do with curing cancer. Detecting it amid the myriad symptoms patients come to talk to us about – yes. Ensuring that those who prove to have the disease get referred to the surgeons and oncologists who will try to save their lives – yes. But should I not have spent my career researching, or wielding the scalpel, or prescribing the radiation and drugs that might actually save life?
I play my part. And an important role is being able to listen, to come alongside, to hear and absorb people’s terror and fear, and where possible impart a dose of hope. Somewhere inside me remains that 13-year-old boy sitting at the bottom of the stairs, just him and his Dad home alone; the father terrified by the bloody diarrhoea that seemed to herald the end of everything; the boy without the first idea of what he should do.
[See also: How an NHS doctor burns out]
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This article appears in the 21 Mar 2018 issue of the New Statesman, Easter special