The Irish Experience of Cancer

Tony Farmar

Issue 384, vol.96, Winter 2007

He called them ‘Ireland’s reigning diseases’. In the early Middle Ages it was leprosy, still faintly commemorated in Dublin’s Leopardstown and Chapelizod. Starting in the mid 14^th century, recurrent outbreaks of plague terrified people into fearing that a sin-infuriated Deity was willing to wipe out the human race. Mysteriously, plague disappeared in the 17^th century, to be replaced by dysentery, called simply ‘looseness’, which killed natives and settlers alike. In the 18th century the disfiguring and sometimes fatal smallpox was feared above others, until first inoculation and then vaccination curbed its terrors.

In the 19th century various ‘fevers’, for instance typhus and cholera, were the prime concern of medical men. The worst of these was tuberculosis, (TB) which was dreaded as a familial and social taint, all the more because it was particularly young men and women who were most affected. However, the incidence of TB actually started to decline in 1904, worsening temporarily during the two world wars. We do not know why this decline started - perhaps it was an unintended consequence of the improved housing conditions stemming from the British policy of ‘killing Home Rule with kindness’. TB was at less than a third of its former virulence when, like the Chinese banging drums to end an eclipse, Noel Browne noisily entered the stage, and a few years’ later streptomycin+PAS effectively caused it to subside absolutely.

Halfway through that century (1944 to be precise), cancer usurped TB’s place as captain of the men of death. Given its current prominence, it is startling to realise how little the Victorians were troubled by it. In his Practice of Medicine, published in 1848, the internationally renowned Irish medical teacher Robert Graves devoted no fewer than 23 out of 70 chapters to ‘Fever’. His index contains only two references to cancer, both underlining its unfamiliarity. One, for instance, describes ‘a singular and uncommon disease of the lungs’ (i.e. lung cancer); he goes on to refer to ‘this obscure and difficult branch of thoracic pathology’. Because it was of relatively uncommon occurrence, diagnosis of cancer was for a long time quite uncertain, being confused in particular with similar-seeming skin ailments. As Hippocrates had done, people distinguished internal and external cancers, the former being uncertain of diagnosis and impossible to cure. The outlook for the latter was more cheerful, since they were susceptible to surgery and often (though perhaps they were not real cancers) to quackish treatment by local ‘wisemen’.

By the 20th century, as life expectancy lengthened, cancer became more prominent. Not that the disease was well understood. Indeed, Dr Christopher O’Brien, founder in 1899 of what became St Anne’s, the first Irish hospital devoted to the disease, commented in an article in Studies (vol. 13, pp 91-100) in 1924 ‘‘we stand today where the ancients stood, baffled and bewildered by darkness and impenetrable gloom, despite the millions spent on cancer research.” Scientists and doctors were scarcely better informed fifty years later. It was only in the late 1970s that a series of insights into the workings of the cell made it clear that cancer was not so much one disease but several, each with different pathways and manners and outcomes. A non-melanoma skin cancer, for instance, is a quite different process from a deep tumour in the lung. In the 19th century ‘fever’ was popularly used for everything from typhus to a chill, so the slightest temperature seemed to have grave potential; today the one word ‘cancer’ carries an equal burden.

Of course, the fear of cancer was well founded. For too many, the diagnosis was the precursor to a lingering, painful and humiliating death. ‘A long illness, bravely borne’ was the rubric in the death notices, and everyone knew what it meant. Now, goaded by the hospice movement, the medical profession is slowly overcoming its reluctance to provide adequate pain relief, and the three-pronged attack of surgery, chemotherapy and radiation becomes ever more sophisticated. People are beginning to talk of some cancers becoming more of a chronic than a fatal condition, worse than asthma, but not as bad as HIV. More and more people are living to tell the tale.

Lia Mills’ marvellous In Your Face (Dublin 2007), anaccount of five awful months coping with the impact of cancer of the mouth, is only the latest - though in Irish terms by far the best - of a long line of so-called ‘cancer narratives’. In Ireland they started in the 1970s with two books published by Mercier Press: first Captain Feehan’s moving 1972 account of his wife’s death from breast cancer and then I’m not afraid to die by ‘An Irish Housewife’ (1974).

Now the library shelves groan with Irish and imported accounts of the cancer experience, reflecting growing public willingness to address the disease. Reading Ferdia MacAnna’s Baldhead (Dublin 1988) makes it clear this was no small change. Cancer created secrecy. MacAnna’s doctors spoke of the disease not to him - a 31-year-old journalist with testicular cancer - but to his wife, and she eked out information to him on a ‘need to know’ basis. At first he kept the information from his parents, and then told his mother, but with a strict injunction that she not tell his father, and so on. A study in the mid-1980s revealed that nearly one-fifth of the patients in St Luke’s, the premier cancer treatment centre in the country, had no idea what was wrong with them.

Many cancer narratives are of the ‘how I beat cancer with prayer and lettuce’ variety, but a few, such as for instance Ruth Picardie’s Before I say Goodbye (London 1998), based on her Observer articles, are entertaining, unsentimental and genuinely informative. John Diamond’s C: Because cowards get cancer too (London 1998) is even better, perhaps because he survived long enough to transform his original articles into a book. The principal British student of these accounts, Dr Jeffrey Aronson of the Department of Clinical Pathology at Oxford, is inclined to believe that Susan Sontag’s influential essay Illness as Metaphor (1978) was an important initiator of the surge of patients’ tales that began in the 1970s. This cannot be the whole explanation in Ireland, as the publication dates of the Mercier titles demonstrate. It is unlikely that the former Olympic athlete Fanahan McSweeney’s 1994 book Living and Loving with Cancer, or Janette Byrne’s recent angry outburst If it Were Just Cancer (Dublin 2006)owed much to Ms Sontag.

Dr Aronson analysed some 270 or so illness narratives written in the last 25 years, the vast majority of which are either about cancers or neurological problems. He describes the motive for writing as typically altruistic - a desire to help other patients come to terms with their illness, techniques for getting through, to educate and sometimes criticise carers. However, many of the authors must have experienced the sick person’s reluctance to read about (as opposed to talk with) other victims. So one cannot help feeling something deeper than altruism is at work.

During the long grim hours after surgery, and struggling through debilitating sessions of chemotherapy and radiotherapy, the patient is pushed to think, perhaps for the first time since adolescence, on the great questions of life and death. In a youth-oriented and predominantly non-theological society, the Four Last Things (Death, Judgement, Heaven and Hell) do not feature much in ordinary discourse. So, during the painful hours of doubt and hoped-for recovery, such questions obtrude themselves with an unexpected force: Who am I, really? What is the point of it all? And at the simplest level - why me? In her study of Irish children with terminal cancer Children’s Last Days (Dublin 1998) Anna Farmar reports one 10 year old leukaemia patient as crying unanswerably: ‘Why me, Mummy, why does it have to be me?’. Gloria Hunniford’s daughter Caron was not alone in being tormented with the idea that her breast cancer arose because she had done something that turned God against her - ‘she explored this over and over again with different people, gurus, healers, spiritual leaders for almost the rest of her life’ (from Next to You: Caron’s Courage Remembered by her Mother; London 2005).

Mostly, however, the narratives shrug off such fears, and become, almost to their author’s surprise, vivid affirmations of being alive. As one survivor put it in Talking Cancer (edited by Joe Briscoe and Roberta Collins) ‘now, five years on I can say that life is richer after cancer. Worries and cares take on a different dimension, Why get uptight? Why the hassle? Life is sweet. I could be dead.’

In May 2006 the novelist Lia Mills finally dragged herself to the dentist to have him examine a painful lump in her cheek. Very soon she found herself in St. James’s Hospital, first undergoing tests, then surgery for a full-blown tumour, to be followed by chemotherapy and radiotherapy - a five-month sentence. What makes her narrative stand out is not the pain, the self-doubt, the exhaustion she endures, but the richness and humanity of the relationships she relishes: - her family, including the dog, who may have cancer as well; her daughters, with children and exams and boyfriends, overcoming teenage squeamishness to help with bandages and diarrhoea; the people in the ward, including the slightly batty old ones; the nurses and kindly radiographers, especially Sinead, her mouth and face nurse; the multiple grades and specialities of doctors. The women of the ward react to the flirtatious Italian doctor, ‘he’s lovely’ says one wistfully ‘and look at the state of me.’ Friends who buck her up, and others who avoid her; even the M50 plays a walk-on role (literally). And in the background we are constantly aware of ‘the crab, fizzing and spitting with rage . . . like a boiled sweet in my mouth. . . trying to do its lethal work, embedding itself wherever it can find purchase.’

We also do not forget that the hospital is an intensely human place. Things are not perfect: doctors forget to prescribe painkilling ‘meds’; the treatments are debilitating and often painful; the hearing in one ear is affected and she cannot open her mouth, let alone smile; the bone ‘harvested’ to support her jaw weakens her leg, which breaks; there are long queues for tests and treatments; and sometimes the lifts do not work, and, even if they do, they are crowded with able-bodied visitors going up one floor - ‘the porter and I maintain a self-righteous silence.’ The hospital ward is also curiously permeable - here for instance is a fat man wandering up and down selling Padre Pio medals; a nun dispensing Holy Communion; a nurse looking for the carefully hoarded medical tape, ‘I don’t see your name on it’, she says tartly. Janette Byrne, in the Mater, recalled patients slipping out for a smoke and ordering take-away food.

The humour of the account might hide the depth of the experience, until you come across Lia Mills’ account of the mental struggle just after her 14-hour operation:

      Giving up and letting go seemed far more attractive than the impossible, hopeless, painful effort to keep going. It certainly would be easier. As I sank further and further, each return to the surface was more weighted with dread, more of a struggle. I lapsed into a state of exhaustion that felt as deep and dark as midnight water. On the third night two faces shone above me like moons, not letting me go. Simon [her husband] and Dudu, my nurse for the night. I swam towards and away from them. I couldn’t decide. I can’t. This is too hard. But her eyes and Simon’s voice held me to the surface, fixed me in place, and I stayed.

Many doctors, notably the outspoken Professor John Crown of St Vincent’s University Hospital, are unenthusiastic about the unmeasurable contribution of ‘courage’ and ‘fighting’ to cure. ‘Will’, ‘belief’ and ‘resolve’ are certainly staples of quack approaches to cancer (though no one ever supposes that a man could cure his baldness by self-belief). On the whole, nurses are less sceptical than doctors on this issue. To a layperson this passage exemplifies how ‘hanging-on-in-there’ might give the drugs and the radiation and the natural healing processes of the body as much time as possible.

All of this is important not just as part of the general human condition in Ireland today, but more intimately. Some form of cancer will affect One in Three (London 2006), as Adam Wishart’s well-researched mixture of science and personal life exploration of his father’s sickness is titled. Lots of us will get cancer during our lives and virtually all will know family and friends with the disease. These cancer narratives, even ones so well written as Lia Mills’, are not always easy reading, but they do provide us with a way of thinking in advance about something almost as inevitable as tax.

Tony Farmar has recently completed a History of St Luke’s Hospital in Rathgar, entitled A Haven in Rathgar — St Luke’s and the Irish experience of cancer 1952-2007.