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Now that I have cancer, how should I live?

Once a death sentence, my diagnosis has proved a weird limbo of scattered treatment and blurred identities.

By Jeremy Seabrook

A diagnosis of cancer plunges us through the fragile membrane of daily social habits into an abrupt confrontation with mortality. Yet those habits, “our way of life”, impose a heavy burden of avoidable carcinogens on the people. The US National Cancer Institute has identified scores of products in frequent use which contain substances that expose us to an increased threat of cancer.

These include asbestos, which although no longer used in the construction industry is still creating victims of mesothelioma; benzine, which is used in adhesives and cleaning products; and beryllium, used in aircraft components, transistors, nuclear reactors, and produced by the burning of fossil fuels. Meanwhile hundreds of chemicals have been identified in exhaled tobacco smoke.

Other carcinogens include naturally occurring substances – radon and cadmium, for example – some of which are released into the atmosphere as a consequence of industrial extraction, while yet others, such as trichloroethylene, are created by chemical synthesis used for refrigerants, aerosol cleansing products and spray adhesives. Although cancer-causing chemicals pose the greatest danger to those working in places where they are produced, they also threaten people who live near their sites of production, where these pollutants readily contaminate air, water and soil.

[See also: Whatever happened to the Conservatives’ “war on cancer”?]

Objects in daily use which may induce cancer include paint stripper, synthetic rubber, metal coatings, certain cosmetics, and even medical treatments, such as preparations made from coal tar for skin disorders. There is a risk from products using quartz, from glazes, pet litter, talcum powder, waste water treatment, anti-freeze, sterilising agents, bee-keeping equipment, fungicide, germicide, disinfectants, mineral oils used in car manufacture, steel products, screws, pipes and transformers, brass and aluminium production.

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It is significant that some of the most common cancers today – perhaps one-third of cases – affect the reproductive and nurturing system of the human body. The environmental factors in this development are hard to quantify; but the use of chemicals in human food and animal feed, toxins from pesticide residues and contaminants from processing and packaging occur in the apparently most innocent products; indeed, the elements which sustain life – food, water and the atmosphere we breathe. Scientists have recently detected the presence of nanoplastics in the placenta of pregnant women and in the bodies of the newborn, while tiny fragments of plastic rival the permanence of the oceans in which they fail to dissolve.

At least cancer is freely discussed in the contemporary world. This was certainly not so in the provincial working-class community where I lived as a child. Then, the word itself was rarely spoken aloud. Women would mouth it silently and accompany it with a grimace of hopelessness and a shrug of resignation. It was as though uttering the word might attract a more virulent visitation of the disease. Fear of cancer was one reason why the grim structure of Northampton Infirmary was regarded not as a place where people went to be cured, but where they went to die.

If this contained an element of truth, it is because it was widely believed that cancer was always fatal. Reluctance to seek diagnosis – let alone treatment – for illnesses that people could not easily define allowed symptoms to develop to the point where they did, indeed, become incurable. The persistent cough, the “lump” or the “growth” that women hid so as not to disturb the routine of servicing the men in the family, excessive fatigue, the loss of weight and appetite – all these things were either denied or hidden until the individual was close to collapse. Even after the inauguration of the NHS, people still looked to patent medicines, or fell back upon the remedies of ancient superstition, in the hope that symptoms could be suppressed. There remained a brisk trade in pills, elixirs and syrups that claimed to cure the gravest of disorders, and people took refuge in the familiar routine of daily work and domestic ritual, as though pretending that life was normal might ward off the catastrophe to come. Schooled to harsh discipline, poverty and want, they were stoical and fatalistic and tolerated levels of pain and discomfort that no one would accept today.

Even now, the idea that “when your time comes” it is best to yield to the inevitable continues its hold over people’s imagination, long after significant improvements in treatment have made many cancers not only treatable but also curable. The legacy of fear is not easily set aside, despite the great medical and technological advances that have enabled a more optimistic narrative. Many people still feel there is something final, unappealable, if not terminal, in any diagnosis for cancer.

When friends and acquaintances learned that I had aggressive prostate cancer, I received a number of what were plainly valedictory visits, some of them from people I had not seen for years. They were slightly discomfited by the fact that I appeared to be functioning reasonably well, that I was not fading away, and that the haste to take their leave of me might have been premature.

[See also: Britain’s invisible cancer patients are a timebomb for the NHS]

This is not to make light of the disease that, according to the Office for National Statistics, killed 145,000 people in 2021 – one quarter of all deaths in Britain. But it has become clear in recent years that “living with cancer” rather than dying of it has assumed a greater salience than ever before. Fifty years ago, average life expectancy after a diagnosis of cancer was about a year; today the median is estimated to be ten years.

Living with cancer is a grim cohabitation which more and more people must now accept. After diagnosis, I was sufficiently relieved by the consultant’s verdict (which I awaited as though in a criminal court) that my life was under no immediate threat, to ask if this meant that I could go home and unmake my deathbed. It was clear that I had already succumbed to an old fatalism.

Such a sentence, suspended by advances in medical science, poses many questions for the individual and her or his relationships, occupation and therapeutic activities. Should we continue to live as before? Should we make preparations for a possible swift deterioration? Should we make peace with all those from whom we have drifted apart, through negligence or indifference? Should we spend any savings we have on luxuries we have always denied ourselves?

Of course, many people have no option, since they do not have the means, the will or the strength to make such choices – for instance, those who have what were euphemistically described during the Covid pandemic as “underlying conditions”, the already infirm, the isolated and demotivated, the individuals weakened by old age, dementia or life-threatening conditions. But even those of us who have until now survived serious sickness or debility must prepare for a time of the reprieve, the respite, delay or adjournment; what Sartre called le sursis. Perhaps it is the many social regressions we see in the contemporary world that make us cling so tenaciously to improved medical technology as a sign of human progress. And even in this limited area where progress is indisputable, it is clear that there is a price to pay for medicine’s enhanced efficiency.

During the multiple tests prior to diagnosis, I was never physically examined, though my body was subjected to continuous and repeated monitoring in the form of scans, x-rays and ultrasound. Images of me were so fragmented, dispersed and dematerialised that I felt weightless and without substance. I was shocked by the absence of physical scrutiny and felt I had already become a phantom.

The sense of becoming etherealised was made more intense by the treatment. Because the cancer had spread beyond the prostate, radiotherapy was not possible, so hormone therapy was prescribed. Since testosterone produced by the prostate is the vehicle that conveys cancer cells around the body, the specific treatment is intensive doses of the female hormone oestrogen. Among the side-effects of this are features associated with the menopause – sudden fluctuations in body temperature, mood-swings, exhaustion.

The treatment resembles that given to transitioning males with gender dysphoria, and it gives an insight into what women go through. This might be a useful experience for many men in other circumstances, but it felt like an assault upon an identity already made fragile by illness, and in danger of evaporating under the influence of all the instruments by which doctors had been able to diagnose the cancer in the first place.

The sense of personal disintegration was exacerbated by the way in which physical treatments were in locations scattered around north London – bladder in Highgate, compression stockings in an oedema clinic in Wood Green, side-effects of medication with a GP in Muswell Hill, therapeutic activities in Camden and elsewhere. It felt like a dismembering. Despite an overstretched and struggling NHS, treatment was effective, but care a subordinate luxury. “Not immediately life-threatening” was the oncologist’s reassurance, with an advisor to suggest distractions: yoga, art classes, online meetings of the similarly afflicted. I was given suggestions for killing time – the same time which, at its variable but relentless pace, is also killing us.

In the no-man’s-land (indeed, no-person’s-land) between treatment and the body’s response to it, the unexpected sudden fluidity of identity, nocturnal insomnia and daily exhaustion, it is difficult to fill the hours, which simultaneously hang heavily and speed by. I am fortunate in that I have projects that absorb my time (though it scarcely belongs to me) and diminished energy, but unfortunate in that I do not have a family with its promise of continuity. I am lucky to have a partner who is a committed and loving carer, but unlucky in that I have no wider circle of people bound by the duty and obligations of kinship.

When I asked the oncologist how I could distinguish between the effects of cancer, the medication used to treat it and the onward march of old age, he said it was difficult. Many strands of experience, from the socially arbitrary to the existentially inescapable, have become tangled. The social and economic system has been so effectively naturalised that it is virtually impossible to separate alterable economic determinants from the imperatives of life itself; as though creation had become subordinate to the creation of wealth (which reached a global value of $94 trillion in 2021). No better camouflage could be imagined for the avoidable scourges that we continue to accept, all the carcinogens and generators of ill-being, as the price we must pay for our fragile and haunted freedoms.

Jeremy Seabrook is an author and journalist. His book “The Refuge and the Fortress: Britain and the Flight from Tyranny” was shortlisted for the Orwell Prize

[See also: Will we soon have vaccines for cancer?]

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