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.
Thank you. I feel the same.
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Oh dear.. Look, can I just say that people are bizarre, and it would not matter what the subject was, this kind of disagreement without any actual proof of things happens on a variety of subjects. I’ve seen some really weird disagreements on the FB.
I’ll give an actual example because I am wacky that way. I’m on a few local facebook groups and recently one of them had a post from a lady. Where I live, every single roundabout is one lane only. Recently though a new roundabout was added which is two lanes and allows people to turn right from the left lane.
I flat out refuse to make the turn from that lane. In my opinion it is terribly dangerous, it is somewhat rare for people in the second lane to stop and give way there and one day someone is going to end up getting killed there because of it. I do not approve of putting my own life in danger just because it is “legal” to do something. Plus I love my car!
One rocket scientist had previously nearly had an accident turning right from the left lane and the person who nearly ran into her had followed her in a road rage type of incident. Rather than make the decision that in future it would be wise to turn right only from the right lane there, this rocket scientist decided it would be a good idea to continue turning right from the left lane and on this particular occasion she had her kids in the car, and again, a road rage incident, except this time the people who nearly hit her followed her for a significant amount of time, before she had a brainwave and drove to the local police station.
So, rocket scientist decides it would be a good idea to post on the local group, informing everyone that it is perfectly legal to turn right from the left hand lane at that roundabout. There were in general three schools of thought on the subject –
Mine – well this is clearly not a safe or wise thing to do even though it is legal, and it would be safer to turn right from the right hand lane, especially with kids in the car. It is one thing to put your own life at risk but it is quite another to risk the lives of your kids in this manner. Rocket scientist has now experienced road rage twice, so best to stop doing this and avoid a third incident.
School 2 – This should be fixed and made illegal as all the other local roundabouts are one lane only and there is no signage to warn drivers that this roundabout is different to the others.
School 3 – Making this turn is perfectly legal and people should keep making this turn and if there is an accident here it will be the fault of the people not giving way to those already on the roundabout.
The argument went on for about 300 comments, the fighting really got out of hand, the name calling began, and soon afterwards the post was deleted, but not before I began to dream of planning a “caper” of heading to this location in the dark of night and black painting out the turn right arrow in the left lane. I’m wacky that way, too. 🙂
People always want a cure to things. They want to believe that if they do X then Y will happen. It is one thing to believe something within yourself and act appropriately, it is quite another to try to convert others to your point of view. As we’ve seen lately, there are people who want to make a profit from telling others they have a cure for things like cancer – and as you’ve seen yourself, there are plenty of people who are buying what they are selling..
People are buying because they seem to believe that the very worst belief of all is to believe that one has no control over anything, and that shit happens whether they eat Kale or paleo or whether they smoke 3 packs a day and drink 2 bottles of wine.
For me personally the very worst of these is the religious evangelist who wants people to believe God will cure them without putting in any effort or energy on their part. (sarcasm on)Yeah, that plan has always worked out incredibly well for people. (/sarcasm off)
Anyway, I think I’ve learned my lesson about these community groups and discussions on the internet, there is no way I can get the time spent reading these arguments back and I would be much better off removing myself from them and doing something more useful with my time. 🙂
Yep, I have officially disengaged because to keep arguing with these idiots is pointless.
I should say, I often think I have learned that lesson, but sometimes I do get drawn in to reading these comments anyway, because arguments between people often make for compelling viewing. 🙂 And on odd occasions if I feel strongly enough I will put my 2 cents in but every time I have done it, this has turned out to be a total waste of my time and energy.
Oh don’t be surprised if I go back there and get involved again, I find it really hard to stay away – I feel it’s my duty to bring some non-crazy in to dilute the crazy, if only just a little bit.
Here, here!! I just love it (not) when uneducated people ear bash me about all the so-called “natural” cures and diets I should have used to avoid cancer in the first place, and what I should be doing now if I want to guarantee it doesn’t return. It’s all done without a trace of irony or self-awareness, with looks of disbelief when I politely debunk their hokey beliefs…..even when I have already told them I am a MEDICAL RESEARCH SCIENTIST with a PhD and 25 years experience. But apparently it’s me that is in denial…..sigh.
Christ, I can’t believe that people would still argue the point, knowing you’re a medical scientist!! The disrespect and contempt that is expressed non-verbally by people talkign about their natural cures is what irks me the most. I was told by some random on Facebook today that I am naive and brainwashed. Oh how I’d like her to have a crack at what I went through during 2012 and 2013, and then get back to me about how naive I am.
You seriously have to laugh or you’d go postal. But yes, I have been accused of being brainwashed AND being in the pocket of “Big Pharma”. The hilarious thing is that unless it is completely avoidable, most of us bend over backwards not to have any association with pharmaceutical companies lest we be accused of bias. Oh, and apparently I shouldn’t complain about the 4 months of sheer misery on chemo because there were healthy, natural cure choices that would not have made me sick. That is technically correct – I would have been dead, yes, but not sick. Lol (vomit).
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My other favorite is my double mastectomy and reconstruction being a lifestyle and cosmetic choice.
I want to know what lifestyle you’d be aiming for with that as your choice?!
Upper body flotation……??
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I work with ladies who have cancer- and who are constantly told to THINK POSITIVE. It’s done so forcefully that they often have trouble expressing their sadness, fear and anger- such reasonable reactions to an unreasonable situation. It places the blame on their shoulders if the cancer comes back, which is horrible. Anyone with cancer has enough to deal with already. Good diet, therapy and so many other things are good options – it’s the method of delivering the message I object to.
You make perfect sense. Look, I’m not a doctor. I used to be a health writer. I have friends and relatives who have died from cancer, those who have survived, and those who are still slaying it. I think the best approach is to treat it with both, whatever works, and your ideas make sense. It’s like those people who say that thinking positive and prayer will beat it. It won’t. I know people who have wanted to live so, so much. But trying, thinking positive, eating well etc won’t hurt.
I had lots of people tell me they wpuld pray for me, and Ny response was always ‘I’m sure that can’t hurt, but you know what would absolutely make a difference -making a donation to cancer research. Some took it well, others were offended, but let’s face it, telling someone to think positive or that they’re in your prayers are just cliches to cover up fear. The best thing my oncologist ever said was that shot happens, because it freed me up to stop blaming myself and start focussing on fighting. The power of the mind cannot be underestimated, but it, like enemas and wheatgrass juice, is not going to cure anyone! Thanks for reading and commenting so thoughtfully. Julie