When we create a “battle” narrative around cancer, we rob people who are facing the disease of a chance to shape their own narratives, says Sali Hughes
Last month, the press spoke of patient advocate, campaigner and former cabinet minister Tessa Jowell’s tragic death after a year of “battling brain cancer”. At the same time, Heathers actor Shannen Doherty’s own “cancer battle” was detailed in People magazine. In this country, broadcaster Victoria Derbyshire, who has done vital and impressive work in encouraging self examination and vigilance around breast cancer, was lauded for her own “brave battle” against the disease. Over on news site CNN, one can now scroll through an entire gallery of celebrity cancer battlers, each as brave, strong, defiant and feisty (insert own combative adjective here) as the last.
Except that despite how we choose to describe and portray them, cancer patients are not embroiled in some mental tug of war, where sheer strength of mind determines the speediness of their recovery or contributes in any meaningful way to the outcome of their treatment. Because they are ill. Positivity alone no more shrinks a tumour than snake oil, crystals and avo smash. What will make cancer even tougher, though, is the societal expectation of relentless optimism and a gung-ho, can-do mentality, even when it is at odds with someone’s true personality and flies in the face of medical fact.
While we patronise the one in two who will be diagnosed with cancer in our lifetimes, treating them like brave little soldiers for whom everything will come good if they simply refuse to accept otherwise, it would appear that patients themselves are losing out on important discussions and vital planning. According to Macmillan Cancer Support, a quarter of sufferers never talk to anyone about their fears of dying because the pressure to see themselves as a “fighter” proves prohibitive. Research commissioned by the charity reveals that 28% of cancer patients even report feelings of guilt if they can’t stay positive about their disease. Thinking realistically about death seems to others like a concession of defeat.
What is most disagreeable of all, is that all this combat rhetoric by definition implies that people who die of cancer just didn’t fight hard enough when, in fact, they had no say in the matter
This, says Macmillan, may well account for just 30% of terminal patients dying at home, when more than twice that proportion would prefer to. In other words, instead of spending precious weeks or months making plans for their own deaths, and getting their affairs in order, a large number of patients are continuing treatment, entering hospital and pursuing further avenues in an attempt to show those around them that they haven’t “given up” on conquering the unconquerable. “We know that making plans while receiving treatment allows people with cancer to retain a sense of control during an emotionally turbulent time,” says Adrienne Betteley, an end-of-life care advisor at Macmillan. But instead of encouraging people to engage in this important and worthwhile process, we are, undoubtedly with the best of intentions, depriving them of the death – and remaining life – they want.
Even aside from this very real practical obstacle that the whole “fighting” analogy places before patients with terminal diagnoses, it’s pretty offensive to cancer patients everywhere, who, in managing their treatment and recovery, can do little more than as they’re told to. We don’t decide which cancers hurt us, which kill us, which are sent packing by the drugs doctors choose to prescribe us. We can only follow the suggestions of people who know better – turn up for the hospital appointments, take medication on time, eat and drink what’s good for us, have the operations, scans and chemo. Nothing else is within our control. When cancer strikes, we have little choice but to put our faith in modern medicine and wish for the good luck needed to join the 50% who make it past 10 years of recovery.
It’s admirable to feel determined and defiant, and no doubt helpful to many to see their cancer as a project to complete, a debate to win, a hostile territory to conquer. There is surely no right or wrong way to approach your own disease. Which is precisely why the party line of so much of the media and charity sector is so unhelpful. While it perhaps makes us feel less afraid, the narrative we impose on all patients prevents them from writing their own, deeply personal, one. “We know that ‘battling’ against cancer can help some people remain upbeat about their disease, but for others the effort of keeping up a brave face is exhausting and unhelpful in the long-term,” says Betteley at Macmillan. Not least, one might fairly assume, because determined optimism is simply not part of everyone’s make-up. With a limited time left, there’s a strong argument for living life in as normal a way as possible, to feel like yourself inside an increasingly unfamiliar body. If you’re not a natural optimist, then how on earth is it helpful to anyone – yourself or your loved ones – to suddenly become something else?
What is most disagreeable of all, is that all this combat rhetoric by definition implies that people who die of cancer just didn’t fight hard enough when, in fact, they had no say in the matter. Worse still, it unwittingly suggests a lack of bravery in “giving up the fight” when very often, the toughest and most courageous decision of all is to cease treatment and face the inevitable. I’ve seen relatives and friends do this and while I continue to grieve years later, I still feel feel awestruck by their dignity and immense bravery. Dying – though no one’s desired outcome – is not a battle “lost” when the alternative is feeling undead – in pain, unmanageable suffering and unyielding exhaustion, with both patient and loved ones in acute distress. We are not giving up on those we love in respecting their readiness to leave, we are supporting them. Dying of cancer is not quitting. It is accepting.
Via : the-pool