As a cancer patient and blogger, words are something I obsess about. A couple of weeks ago, in the midst of last-minute holiday preparations, I got a call asking if I'd be interested in going on BBC Breakfast to give a patient's perspective on the language used around cancer. Never mind that I hate public speaking and had less than 24 hours to prepare, this is a subject that really interests me so I accepted the challenge.
The discussion got off to a bad start when I was mistakenly introduced as someone with ‘terminal’ cancer. This was a simple misunderstanding. However, it highlights the importance of using appropriate language with cancer patients. The word terminal only applies when patients have run out of treatment options and are reaching the end of life. I have secondary not terminal disease.
The discussion I took part in refers to recently published research that highlights that the use of military metaphors (like bravery, fighting and battling) can be damaging to patients with terminal cancer. Although research in this area is long overdue, the findings won't come as a surprise to those living with the disease.
Mind your language
I first became aware of the peculiar language around cancer after my primary breast cancer diagnosis in 2012. My curiosity was tweaked by the well-intentioned messages of support I received from friends and family.
Suddenly everyone had an opinion on how I should tackle the disease. I should eat less cheese; eat more broccoli; juice 13 times a day; eliminate stress; restore my pH balance; and deal with those unresolved emotional issues undoubtedly (I was told) the root of my disease. But more than anything I should fight, I should battle and wage war on those renegade cells intent on killing me.
The message was clear: I had a battle ahead, but if I adopted the right attitude, my bravery and courage (and let's not forget positive thinking, the most powerful weapon of all) would be rewarded with the ultimate victory survival.
To begin with I played by the rules. When my target was a tangible one I found the language of battle empowering. As I quaffed my daily juice I imagined the cancer cells running for cover: ‘Quick, run, she's drafted in the broccoli!’ I pounded the pavements and began a daily yoga practice. Every stride and stretch brought me another step closer to victory.
I developed an inner warrior as suggested by one of the numerous 'beat cancer' books I read. Mine was Ellen Ripley, the shaven-headed heroine from the Alien films. I envisaged her blasting the cancer cells into submission. I thought I'd found the perfect ally until my brother pointed out that the aliens in the film have a tendency to erupt from victim's chests. This parallel was a little too close for comfort.
I ditched the inner warrior and as someone now facing a lifelong ‘battle’, the language of war no longer sits comfortably with me.
When you're a cancer patient you get used to people commending you on your bravery and courage. But I've always felt awkward about wearing these badges of honour.
Bravery implies strength and fearlessness, but labelling people in this way puts added pressure on them to be good and uncomplaining patients. In the ‘battlefield’ of cancer, fear, anger and depression (normal reactions to a cancer diagnosis) are viewed as weak and negative traits, perhaps even cowardly. You've got to ‘be strong’ and you ‘have to fight this’.
I consider myself both strong and resilient, but when you're living from scan to scan you realise that mental strength has no effect on the result. It can be quite demoralising continually being told you can fight this when actually the weapons are in the hands of the doctors treating you, and the researchers working on the next generation of cancer drugs.
This might sound like I've resigned myself to fate but I take a very active role in my treatment. I look after myself physically and mentally and I'm always aiming towards a cancer-free future. However, cancer is an unpredictable and pernicious disease. It takes more than attitude to fight it.
Losing the battle
Like many before me I believed that my fighting spirit and positive attitude played a part in me beating the disease. But my cancer returned not once but twice. I now face a battle that will never end. Is it my fault that the cancer came back? If I lose the battle is it because I didn't try hard enough?
The implication of guilt and failure is a common sentiment among those living with secondary and terminal disease. As if it's not bad enough living with a life-limiting illness, we live under the shadow that we may have failed in some way.
Perhaps if I hadn't eaten that cheese sandwich; if I'd juiced 13 times a day; if I felt more 'blessed' (cancer is a lesson don't you know?) and less stressed about having this horrific disease then it might not have come back. Perhaps I should have tried harder. I'll never know, but these are sticks I and other cancer patients beat themselves with.
A fighting spirit gives rise to hope and optimism and there’s definitely a place for these for patients at any stage of treatment. However military metaphors offer little protection for those on the front line, and we need to think of better ways of talking about cancer. It's a disease, not a war.
My attitude today is more one of hope and optimism than GI Jane. Some days I struggle. Some days I cope. I accept the treatments offered and manage the side effects to minimise the impact on my life. I live to the best of my ability with a disease for which there is no cure.
I am living with – not dying of – secondary cancer.
Vita bloggers' views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.