Wednesday, 19 March 2014

it's all fun and games, until someone loses a nipple

A couple of weeks ago, I watched the film ‘Dallas Buyers Club’. I went expecting to see a gritty portrayal of a rodeo star’s experience with HIV. I wasn’t expecting to spend most of the film scrunched down in my seat, crying fat, silent tears into my scarf. I cried when the doctor surprised the main character with the news he was a dead man walking, because I remember clearly the shock and denial I felt the moment my doctor issued my death sentence. I cried because I remember thinking - in the midst of the most horrific conversation of my life - “This is why they tell people to sit down for bad news.” If I hadn’t been sitting when he told me, I’d have surely found myself on the floor in a broken heap. 

But the scene that hit me like a sucker-punch to the back of the head was when the protagonist’s young friend, a transvestite, told his father he was HIV positive. When the young man broke the news to his father, he apologised. 

I cried, because when I told my parents, I apologised. 

I had brought the worst kind of fear and pain into their lives. I had betrayed their investment. I had failed them. 

When I was diagnosed with Stage II breast cancer just over two years ago, I told my immediate family first, and then updated my status on Facebook. I don’t know if that was an appropriate way of breaking the news to extended family, friends and acquaintances, but at the time it felt like a very democratic way. It also felt like a very efficient way. For the first few weeks, every time I had to tell someone in person, I cried. I could see my own fear and pain reflected in each pair of eyes I told face to face. Witnessing that distress underscored my own, and filled me with guilt - a guilt for which I often apologised. Sharing the news on Facebook greatly reduced the number of times I had to share my sinister tidings in person. For that, I was grateful. 

But there was another reason I decided to share my ordeal so publicly. 

There is so much talk about ‘raising awareness’. What does that mean? I used to hear that people were doing this or that to ‘raise awareness for cancer’ and think: Well, duh. I am aware of cancer. It’s this disease, right? That old people get. And people who eat rubbish. Or smoke. So what? What else is there to know? My grandma had cancer. She had a wig and spent her last moments of life on so much pain relief that she couldn’t respond to me when I put her hand on my swollen belly and told her about the baby growing inside. Cancer sucks. I know. We all know.

But see, the thing is, I didn’t know jack shit about cancer. I didn’t know healthy people who eat organic food and never smoked get it. I didn’t know that it takes months - years, even - to kick its ass. I didn’t know that it breaks up families and stops you from being able to cuddle your children or that there’s a metric fuck ton of women in the world who have sacrificed one or both of their nipples in their quest to stay alive, and then have new ones tattooed back on. I didn’t know that cancer survivors emerge from their battles crippled by post-traumatic stress disorder and hobbled by their acquiescence to a lifetime of daily pain.

And I figured there were lots of other people out there who were equally unaware.

So I decided to share my ordeal openly, without shame or fear of rejection. I posted updates and photos and test results. I exposed the ugliest parts of my psyche - terror, self-pity, anger - and hopefully, some of the humour and grace with which I tried to approach each challenge, in this blog. I decided to do my bit for raising awareness of cancer by taking people on the journey with me. And then, at some point, I guess I felt I had done as much as I could, because I stopped sharing so much. When, after the second attempt to surgically remove all the cancer, I received the news for a second time that the operation had failed and that my only recourse now was a completion mastectomy, my words and my courage failed me. I stopped sharing. I was given a several-month reprieve from thinking about it; no more surgery could be carried out until my body had had many months to heal from the course of radiotherapy I had after the second op. For a while, I dove headfirst into normality again. I took a break from raising awareness. And now, several months after the successful mastectomy and immediate reconstruction, I find I still don’t want to talk about cancer too much. But it’s there. All the time, it’s there.

This week, the every-so-often Facebook frenzy of 'raising cancer awareness' reared out of the murky pool of look-what-I’m-having-for-dinner and ‘like’-if-you-think-my-kid-should-have-to-clean-his-room posts. In the last couple of years, we’ve seen various ‘games’ that are supposed to ‘raise awareness’: the what-colour-is-your-underwear ‘game’, the where-is-your-handbag (but-when-you-play-it-looks-like-you’re-talking-about-where-you-like-to-have-sex) ‘game’, the put-nothing-but-a-heart-on-your-status ‘game’. This week it’s the turn of the makeup-free-selfie ‘game’. 

Game?

I have been poisoned, cut and burned whilst fighting for my life. I spent two years of my precious life in this fight. My body carries 51 inches of scars from four (soon to be five) operations. My children talk about chemo the way ‘normal’ children talk about Calpol. My five-year-old sometimes goes quiet in the midst of a game, sighs heavily and solemnly declares that “Breast cancer is really annoying, isn’t it?” When she heard her friend’s grandma had been diagnosed with liver cancer, she told me she was making her friend’s mummy a card, “because it’s really sad when your mum gets cancer.”

Each time these stunts have made the rounds, a nauseous anger has bubbled up from my stomach to my chest. I know they are well-intentioned. I know no one means any harm. But cancer isn’t a game if you’ve had it, or if you’ve watched someone you love fight it. Each of these ‘games’ trivialises the very cause they claim to be raising awareness of. Today I read a claim that the purpose of the ‘makeup-free selfie’ was to highlight the loss of confidence cancer patients have when their looks are ravaged by the disease or its treatment.

Uh-huh. Yeah.

Can you imagine checking your Facebook feed and finding it littered with: 

“Here’s a photo of my (unbruised) face to raise awareness of domestic violence! Go me! :-)"
Or “Here’s a photo of my genitals to raise awareness of homophobia! Take that, gay-bashers!” 
Or “Here’s a photo of my child in the bath to raise awareness of paedophilia! Are you brave enough to post a photo of YOUR naked child?”

There are lots of ways of raising awareness of cancers. Donate to research or get involved in fundraising, set up a support network for the family you know at your child’s school who is entrenched in a cancer battle, volunteer your skills at your local hospital’s cancer support centre, use your Facebook status to remind friends to do regular self-exams, check on the friend who fought and won a while back - see if they’re still coping now that their cancer ordeal is old news and they’re ‘cured’, educate your children on making healthy lifestyle choices. 

Just don’t ask me to play ‘games’. Unless it’s the Paralympics. As a breast-amputee.