I made the mistake last night of getting involved in a Facebook thread on my local newspaper’s website. They’d posted a link to this opinion piece, where the writer talks about how offensive it is to be told that diet and healthy living can cure cancer. By the time my husband drew my attention to the thread, all sorts of crazy had been unleashed in the comments, with talk of big pharma conspiring to not cure cancer so they could continue to make money from selling chemo drugs, anti-perspirants causing cancer and positive thinking being the key to a cure, all with a bit of God bless you action thrown in for good measure.
I went into that thread, and I posted about how my remission had been achieved via a range of medical interventions. I noted that healthy eating and living sensibly (ie not drinking or smoking) likely made my treatment a bit easier, because introducing unnecessary toxins into the body when it’s being hammered by chemotherapy would not be a smart thing to do. I thought that posting a reasonable, sensible response from someone who’d actually done the hard yards of cancer might put a lid on some of the ridiculousness, and perhaps encourage some factual debate, but obviously I was being very naive. It deteriorated pretty rapidly overnight, and this morning I felt the anger rising inside of me as I read about freedom of speech and how everyone is entitled to their opinion.
Freedom of speech, or more precisely freedom of expression, is the right to express your opinion without fear of censorship or retribution. Freedom of expression does not mean you can say what you like without being questioned, without being asked to provide evidence to support your opinions, or without having your opinions proven to be incorrect. Freedom of expression does entitle you to say that eating organic fruit and vegetables will prevent cancer, but it does not make you correct. Freedom of expression does give you the right to say that positive thinking will help cancer to go into remission, but it does not make what you say right. Freedom of expression may be a right, but it should be treated as a privilege, and used with consideration for how it may impact on others.
Opinions, theories, ideas and anecdata about cancer are dressed up in many ways and presented as fact. I have been asked lots of times since my diagnosis in 2012 about whether I’m now eating all organic food, or doing juices. I’ve been asked about my exercise regime, my sleep habits, and whether I’ve given up alcohol. I’ve been told about news bulletins about how too much dairy might cause cancer, and others about how not enough diary might cause cancer. I’ve been sent links to articles about the power of positive thinking, and how to reduce stress, and the benefits of yoga.
Mostly, all of this has been done with good intentions; I’m a likeable enough person and people don’t want to see me die of cancer, which is nice. I get that, I really do. But by suggesting how I might change my life so that breast cancer doesn’t come a-knockin’ again, you are suggesting that the way I was living in the months and years preceding my diagnosis in October 2012 caused the cancer in the first place. You are blaming me, the victim, for bringing it on myself. And that is utterly offensive.
When I first met with my medical oncologist in November 2012, we had the sort of conversation that no-one ever envisages themselves having. I was sitting next to my husband; thankfully our four-year old was at daycare. We went through my brief history of breast cancer to that point. I’d had a mastectomy and axilla (lymph node) removal five weeks earlier, with the subsequent pathology results indicating that my cancer was enormously unpredictable and rampantly aggressive. I’d had scans which had shown that somehow, by some unfathomable fortune, it had not yet spread into other organs, and could therefore be treated. The medical oncologist asked me many questions – about smoking, family history, alcohol consumption, gynaecological and obstetric records, breastfeeding, possible chemical exposure – all the while taking detailed notes. He then put his pen down, looked me square in the eye, and said ‘You know what? Sometimes shit just happens.’
And that’s the thing, isn’t it – the thing that everyone’s afraid of? That notion that shit just happens, without reason or explanation, to good, decent people who are just going about their lives, terrorises all of us. But for those of us living with, through and beyond cancer, it’s more than a notion, more than a bogey-man hiding under the bed that’ll be gone when we turn the light on. Shit happened to me, for real. On that day in 2012, the medical oncologist told me that my chance of still being alive in five years was 50%. Today, my chance of still being alive in 2017 is still 50%. Shit actually happened to me, and the residue is sticky and stinky and hideously unpalatable. So when someone tells me that to keep the cancer from recurring I should think positively, or eat kale, or do yoga, it unleashes a fury inside of me like nothing else.
What would happen if I did go on a completely organic, vegan diet, quit my job to avoid the stresses it brings, and move to the country to spend my days meditating and doing yoga, and the cancer still came back? Would people take back all their suggestions and ideas, apologise to me for suggesting that I wasn’t doing enough to keep myself alive and well, and rethink their presumption that illness and disease are always able to be controlled by the force of human will? Or would people publicly lament my cancer with platitudes about being brave and inspirational, whilst privately thinking that I hadn’t done enough, or soon enough, or properly?
As it happens, I do use a number of complementary therapies and treatments to assist in managing the side-effects of my ongoing cancer treatment, and to help keep me as well as I can be, despite the challenges I face. I see a chiropractor, have acupuncture, and regularly take turmeric and fish oil amongst other things. I do all of these things in close consultation with my oncologist, who is the only person I judge as being qualified to advise me on what may, or may not, be of benefit to me. I am the one who will live, or die, by the choices that my doctor and I make, and as such they are intensely private and should not be open for discussion. One person’s right to speak freely does not trump another’s fervent wish to be free from judgement and blame about something which is, terrifyingly, totally out of their control.