The meaning of cancer

Following the death last month of his wife Jane, from breast cancer at the age of 43, Mike Tomlinson paid tribute to her courageous 7 years of sporting achievements and campaigning, saying that this could help to ‘redefine what it means to be a cancer patient’. Jane Tomlinson's marathons, triathlons, and long-distance bicycle rides were extraordinary achievements for somebody undergoing treatment for disseminated breast cancer. Yet, while extending sympathies to her husband and three children, I am doubtful whether Jane Tomlinson provides a role model that we should commend to patients with cancer.

Far from representing a new and enlightened approach towards cancer, the Tomlinson story of defying her prognosis (she was ‘given 6 months to live’ in August 2000) through exertion revives the 19th-century concept that disease can be challenged by will. This notion is always closely linked to the idea that disease is itself an expression of character. The cultural critic Susan Sontag, who died from cancer in December 2004, observed that the view of disease as an expression of inner self appears less moralistic than that of disease as a punishment for sin. ‘But this view turns out to be just as, if not even more, moralistic and punitive’, she argued.1

Contrasting the old myths about tuberculosis (TB) and modern myths about cancer, she noted that both proposed notions of individual responsibility. But, for her, the cancer imagery was ‘far more punishing’. Whereas TB was regarded as a disease of passion or excess, cancer is a disease of repressed emotion, associated with depression (‘melancholy minus its charms’) and stress. Whereas the tubercular character was once envied as an outlaw, a misfit, a bohemian, today's cancer patient is a loser, with a shameful affliction, someone deserving of pity.

Sontag shrewdly observed that ‘theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease’. When the identification of the tubercle bacillus in the 1880s deprived TB of much of its mystery, cancer — a group of diseases that is still ill-understood and for which current treatments are often ineffectual— became the focus of modern fears and of notions that both its onset and its course could be influenced by emotional factors and psychological therapies.

Jane Tomlinson is offered as the model of the active patient who refuses to take a passive role in their treatment. But where does this leave somebody with cancer who does not want — or is not able — to fight or struggle, does not want to spend their remaining months or years running or cycling or becoming a high profile campaigner? Many patients are likely to find the robust activism personified by Tomlinson and encouraged by the big cancer charities that sponsor these campaigns as oppressive rather than supportive.

The public resonance for Tomlinson's activities and heroic death confirms the growing popular concern about cancerrelated mortality. Sociologist Clive Seale has noted how what he characterises as ‘the revival of death awareness’ in contemporary Western society has fostered a notion of dying as ‘a new form of heroism’, one that, in our defiantly antiheroic age, is open to everybody.2 In this scenario terminal illness is endowed with profound meaning and death becomes a heroic drama. As Seale observes, some people embrace the charismatic approach towards death with ‘the enthusiasm of religious conversion’. On the other hand, some experience it as ‘a stigmatising distortion of the truth’.

In her later reflection on AIDS, written a decade after her first commentary on cancer, Sontag indicated that she too had adopted a mission. Her campaign in relation to cancer was ‘against interpretation’; her aim was ‘not to confer meaning, but to deprive something of meaning’. As she wrote, ‘nothing is more punitive than to give disease a meaning — that meaning being invariably a moralistic one’. She suggested that the way forward lay through regarding cancer ‘as if it were just a disease (and not necessarily a death sentence)’.

• © British Journal of General Practice, 2007.