The way we talk to people with cancer is as bad as actually having cancer


babe  • 

The way we talk to people with cancer is as bad as actually having cancer

Please! Stop! Calling! Me! Brave! Thank! You!

How often do you think about getting cancer? How often do you read about it and think shit, that might actually happen to me one day? If you’re anything like me, probably not a lot. It’s a cliche to say “before I got ill I thought I was invincible” but yeah, before I got ill I thought I was invincible. In my defense, it’s extremely rare to get the type of cancer I have — breast cancer — in your twenties. In fact the odds are 1 in 1,732, or 0.06 percent (lucky me), so when I found a lump while idly feeling myself up while watching TV in bed, earlier this year, I didn’t think it was cancer. A short succession of doctors told me the same thing. “Go home and don’t worry”, they said after scanning me. “This is just a precaution, nobody gets breast cancer at your age.” They were wrong, and this February I was diagnosed with stage one Invasive Ductal Carcinoma. And yeah, it’s another cliche to say “my life changed in an instant” but it’s also pretty much true.

My year went from a loose schedule of vacations, nights out, festivals and hangovers to 24 weeks of chemotherapy, three to five weeks of radiotherapy, surgery and in general, months of feeling shit and trying not to die of sepsis.

I’m not great at being sick. Even when I was little I would lie to my mum and dad about injuries, hide infections and tell anyone who would listen that I’m fine thank you very much. Now, I was ‘sick’, but I didn’t want to look sick or be seen as “sick.” So I endured hours of agonizing brain freeze to try to save my hair by cold-capping, I had my eyebrows microbladed and balked at the suggestion that I’d take time off work to recover. I’m sick but not dead, and the thought of stopping my life, not seeing my friends, not working, not looking like myself was too depressing to bear. Unfortunately, what I’ve learned is that when you’re a young person dealing with cancer, particularly breast cancer, the world is not prepared to let you carry on as normal.

Immediately after being diagnosed I went into research mode, spending hours on the internet to try to find out what treatment would be like, how soon I could get back to normal, and (morbid but necessary) the likelihood I would die. What I found was a deluge of articles describing young breast cancer survivors as “brave” and “inspirational”, along with dramatic black and white photos to illustrate their “journey.”  Everywhere I turned for help at the beginning of my ~cancer journey~, I was faced with a softly-softly approach that made me want to scream. A beauty therapist told me they offered discounts to cancer patients, but whispered the word “cancer” as though even saying it would send me into floods of tears. A charity worker admonished me for working during treatment. People wince when I make jokes about being ill. The overwhelming message was horrifying — it suggested that, at a time in your life when you were just deciding on your identity, you were now forced to lose that identity totally to cancer. The implication is now you’re fighting an illness, you’re not a normal person anymore.

Obviously I don’t find that kind of attitude helpful, but some people do — and I’m not attacking those people. With something as traumatic as a cancer diagnosis, you take solace in whatever you need. But personally, I found it unbearably frustrating. Where’s the actual, practical help for young people with cancer? Where’s the information about what chemotherapy will do to your body? The information about returning to your normal life? Sepia-toned inspirational quotes are fine, but I want to know more than if I’ll survive, I want to know if I can live again, if I can ever have a night out again, when nowadays my muscles scream at me during a 10 minute walk to the train station. I want to know if I can ever get wasted again, how long my hair will take to stop thinning, when my eyelashes will come back. Charities and forums exist for cancer patients to try to make them feel less alone, but trust me, nothing will make you feel more isolated than websites which prepare you for the horrible shock of losing your pubic hair, when actually not having to wax is like, literally the only upside of chemotherapy. Basically, most things out there are aimed towards older people for obvious reasons — but young people get cancer too. And they need a voice just as badly.

I am (no pun intended) sick of the flowery language we use to talk about breast cancer. I’m not a “warrior”, not “brave”, I’m not a “pink sister.”  I’m just unlucky, and my eagerness to get back to normal, and positivity as I get closer to the end of treatment are normal reactions to bad luck — they’re not part of my suddenly tragic narrative. Our eagerness to cast young people, particularly young women, with cancer as tragic and brave is problematic and, let’s be honest, sexist. Culturally, we see young women as sex objects, and when the very thing that positions you as a sex object (your boobs) are literally trying to kill you, suddenly you can’t be seen as sexy or young anymore. And when women can’t be seen as attractive, we decide we no longer see them at all. You’re a sick person now, no more no less.

I know this photo is gross OK I’m sorry I took it after surgery and I was still high as fuck

Of course there’s a very obvious — and positive — reason why we talk about breast cancer the way we do, and why the language is so recognizable. The lobby for breast cancer research is phenomenal, and while I might find the pink ribbons that are suddenly everywhere in my life maddening, those same pink ribbons are the reason billions of dollars have been funneled into funding and research for new treatments of breast cancer. They’re also the reason why my chances of survival are so good. Breast cancer survival rates have almost doubled in the past 40 years — previously only 40 percent of women diagnosed with various stages of the disease were expected to survive, now 78 percent will recover and go on to live normal lives. So yes, they have a place, and yes, I’m eternally grateful for what those pink ribbons and “warrior” terminology have done for me. But that doesn’t make it any less frustrating to hear it time and time again.

I finish chemotherapy this week, and while I still have a long road ahead of me before I’m 100 percent “better” I’m really looking forward to not being seen as “sick” anymore. Whether it’s well-meaning or not, the way we talk about cancer, particularly breast cancer, is alienating to young people. Treatments are constantly changing and updating, but our terminology isn’t. If we really want young people to feel supported, motivated and included during their treatment, we need to stop treating patients as delicate sad little flowers. For the sake of their own sanity.

Because if there’s one thing more frustrating than not being able to take the subway during rush hour or steeling myself in preparation for the world’s most traumatic boob job, it’s having to smile and nod while people keep telling me I’m brave.