We think it’s helpful to tell people who are struggling with a life-threatening disease like cancer to ‘keep fighting’. It isn’t. It’s shaming.

Let’s stop the military metaphors and get real about what we’re facing.

When Health Secretary Sajid Javid tweeted that we should get a jab to ‘learn to live with, rather than cower from, this virus,” he was, whether consciously or not, framing a disease as a common enemy that our moral fibre would help to defeat. He was roundly condemned for his insensitive use of language and subsequently apologised for his poor choice of words.

And yet the use of military metaphors to encapsulate our ‘battle’ with diseases such as Covid-19 or cancer is endemic and largely unhelpful for those exhorted to be brave and positive as they undergo sometimes gruelling treatment.

Tumour

I can’t be sure how long cancer had occupied my body before I felt its effects. It came uninvited though given my history as a smoker, not entirely unsolicited and stealthily latched itself on a part of my lung that would cause maximum damage despite the modest size of the tumour. And thank goodness it did, because its location provided symptoms I could not ignore. Nonetheless, it evaded the diagnostic skills of two GPs and three nurse practitioners. Only the most advanced technology could pin down its lethal nature – a computed tomography (CT) scan, a bronchoscopy, an ultrasound and a positron emission tomography (PET) scan. I submitted myself to the investigation for three weeks of the most agonising uncertainty, cursing my body for the imperviousness which concealed the tumour.

A multi-disciplinary team met to analyse the test results and recommend a course of treatment. In my case, they couldn’t agree tactics. I was summoned to hear the lead consultant’s conclusions. She explained to me the approach they might take in fence-sitting terms of ‘on the one hand we could do this, on the other, we could do that’. Her equivalence left me reeling because I had wanted a cure, to be rid of it, but it also made me appreciate that medicine is an art as much as a science. I gradually became attuned to the shades of grey of the many different medical opinions I would receive, especially during the weeks of diagnosis. Certainty is a two-edged sword. Ambiguity, on the other hand, provided a space for me to hope, to defy the odds, to contemplate the possibility of recovery or, at least, of living some kind of life.

Chemo

The surgeon was more reassuringly black and white in both his analysis and solution. Pointing to the X-ray of my collapsed lung on his desktop computer, he explained with combative terminology how he would ‘whip it out’ and remove any lymph nodes at the same time to minimise further colonisation. A ‘blast’ of chemo once I had recovered from surgery would ‘mop up’ any remaining cancer. The junior doctor in the room smiled at the surgeon’s audacious colloquialisms. I felt ready for action and agreed to surgery the following Monday.

How the cancer was characterised by the medical team and well-meaning friends shaped my relationship with it.

I appreciated the lengths to which medical staff went to keep me informed at each stage of the treatment. They did so, sometimes, with the studied conviction of the newly trained in ‘patient communication’. The consultant who told me first that the shadow on my X-ray was probably cancer seemed particularly pleased with the unadorned way she communicated the possibility to me. I might have congratulated her on her candour had I not been feeling sick with dread.

And to make a highly technical process accessible to me, the consultants seemed to co-author a narrative of my ‘journey with cancer’. My diagnosis represented the narrative’s ‘rising action’ and the treatment plan, ‘the climax’, leading to ‘the resolution’ – being clear of cancer. At the centre of this mini epic, I was variously cast in the role of victim, hero or protagonist. The anthropomorphism of my tumour turned it into a kind of playground bully, an almost comical figure. The surgeon described it as ‘sneaky’. Inspired by a cancer charity’s advertising call to action, friends urged me to ‘kick its butt’. Nurses reassured me that my decades of good health would help me ‘fight’ it.

Metaphor

Early on, personifying cancer became an irresistible part of managing my relationship with it. But the minute I started to delineate the metaphor of the tumour as the occupying force and me as the valiant resistance, I ran into difficulties. So what if the cancer had spread? The PET scan showed up areas requiring further investigation, including a small lump on my right breast. Did that mean ‘it’ had won? And if it had, did that make me a loser? And had I done something to deserve the invasion? I was an ex-smoker after all. I’d brought it on myself. I started to feel shame, refusing to say what kind of cancer I had to avoid inviting disapproval. Some cancers are so much more ‘acceptable’ than others. Breast, for example, is the best for prompting unadulterated sympathy. I made up excuses for my breathlessness, attributing it to poor stamina rather than reduced lung capacity. And sometimes, the ‘heroic soldier’ was too sick and exhausted to want to live let alone take up a fight against an elusive enemy.

As the treatment progressed, I started to withdraw from the world, finding it almost impossible to withstand well-meaning advice to ‘stay positive’ and to live up to the expectations that I was tough, strong, determined. Sometimes I was. But the surgery to remove my left lung turned out to be far more radical than the surgeon’s ‘wham, bam’ description had led me to believe and the pain was intense and relentless. Post-operation, I lost my appetite and nearly 28 pounds in weight. I was thin, weak and haggard: no-one’s idea of a hero. Discharged to recover at home, the full extent of my suffering was witnessed only by my partner. Convalescence became a private hell with each of us isolated in different ways, me in the depths of pain and him in the provision of care that offered no relief or comfort to either of us. The resentment we felt for having to play roles we had not chosen and for which we were ill-equipped soon found release in accusation and anger. The rage I could still feel and express despite my sickliness shocked me, but seemed to point to reserves of energy.

Pity

Only when I could manage the pain without opioids and mask my pasty complexion with a smear of blusher – would I receive visitors and only then for an hour, the time I needed to maintain the pretence that all was well under the circumstances. Mostly this tactic was designed to avert pity: seeing the tiniest glint of it in someone’s eye made me shrink. I wanted loved ones to leave me feeling impressed by my fortitude or, at the very least, absolved of any need to worry about me.

Research has revealed that the war on cancer metaphors that is so common in the way we frame cancer, whether in the media or the treatment room, may be making people feel fatalistic about the illness, or amplifying their feelings of personal failure.

I needed a way of thinking about cancer that reflected my unique and differentiated experience of it. For me, de-personalising it was a first step. I cursed my lack of scientific training, for it might have imparted a way to perceive the disease in more prosaic terms, freed of value judgement and therefore self-blame and shame. I needed to stop attributing to the disease some malevolent intent whilst accepting that it is a disease generated by changes to genes that control the growth and division of my cells. It may be ‘of’ me, but I am not my cancer, it is not a judgement on me any more than my freckled skin or myopia.

The story I am rewriting of my relationship with cancer lacks drama, heroism, villainy. I confront it with the full range of humanity I can bring to bear upon it, my weakness, vulnerability, anger and fear as much as my determination and courage.

Without the blunting effects of comic book metaphors, living with cancer has become living at its richest and most intense, in the present.

*Nearly three years after treatment, a recent scan showed that I continued to be cancer free.