Before I was diagnosed with stage 3B Non-Hodgkins Lymphoma in July, 2003, my life was pretty great. My husband Ben and I and our four children lived in big house in a gorgeous seaside town, where I ran a well-known furniture and homewares shop. Our children attended the local Christian school, and we were members of a Christian evangelical community church. Pretty darn awesome, really.
Then one day, everything changed. I was teaching a patchwork class in my shop, and was trying to concentrate whilst feeling like someone was throttling me in slow, silent increments. Swallowing was like trying to digest a dry sock. My chest rattled when I breathed. Slowly, my consciousness began to slip away, as if a door to nowhere had opened behind me and I was being sucked into it. A voice in my head said “You need to go now, right now. If you don’t, pretty soon something terrible is going to happen.”
I called Ben, who took me to the nearest hospital. I talked to a concerned looking doctor who sent me for an x-ray. After seven months of being dismissed by my family doctor as a middle-aged woman with a mild case of gout and a major case of peri-menopausal hysteria, within an hour of being at the hospital they found a tumour the size of a saucer in my chest.
“You’re going to need a bigger hospital.” said the doctor.
I was in shock, and that was to be expected. But what was not as expected was how quickly I went from being who I was before they found the cancer inside me to something else entirely. People began to see me and treat me differently, and the change began almost right away.
The doctor at the first hospital who initially greeted me with concern and curiosity, now backed away with a look resembling abject terror on his face. What changed?
The friend who came to visit me in hospital, with whom we’d shared a glass of wine with just the week before, who now stood with his hands in his pockets and a look of rank suspicion on his face. “You don’t look like someone who has cancer,” he said. Was I was just wasting everyones time?
The visitors who dropped in unannounced whenever it was convenient for them, even though before I had cancer they’d never have come around without calling first. What happened to my privacy?
Being called “darling”, “love”, “pet” and “sweetie” even though I was a grown woman with darlings, loves, pets and sweeties of my own. Was I not still an adult?
Being told what a hero I was, when I hadn’t really done anything except exactly what everyone in charge told me to do, nothing except lie there and take whatever they did to me. I hadn’t been brave. I was scared, confused, angry, often cried like a big sook, told people to go the hell away, and even said I didn’t want any more treatment, even if it meant dying of cancer. Why did everyone keep calling me “brave’?
And the worst – being referring to as “the diffused B-cell Non-Hodgkins Lymphoma”. Why did everyone now call me by the same name as the thing I hated, the thing I never asked to get, the thing I was trying so hard to get rid of?
It almost seemed as though everything I did and was before cancer didn’t matter any more. I wasn’t a grown woman, a mum, a wife or businessperson any more, and we were no longer just a family of six – we were now, in others eyes, a tragedy in waiting. I was a a character in a story, an anecdote people told each other, a cancer patient - a hero.
When you’re diagnosed with cancer, it can feel like your identity changes. People often treat and speak to you differently, which can be frustrating, annoying and downright upsetting. People may also view you through the lens of their own beliefs and experience of cancer, and if those beliefs and experiences are negative, it can feel as if you’re walking around with “cancer” written in black marker across your forehead, scaring everyone half to death.
They avoid looking you in the eye, and if they do, it’s as if you already died.
The good news is we don’t have to be the “cancer victim” or “cancer hero” others want us to be, physically, or socially. We can teach people how we’d like them to treat us.
If I could go back in time to when I had cancer and tell myself one thing, it would be this -
“Jo – You get to choose how you act, what you’re called, and where cancer sits in the bigger picture of your life. Cancer is something that happened to you – but you are not the cancer.”
If someone calls you brave, and you don’t feel brave, tell them you don’t feel brave, and follow up with how you do feel.
If someone uses a diminutive to address you such as “sweetheart” just because you have cancer, and this makes you uncomfortable, it’s okay to say so. Kindly.
If someone insists on dropping by at an inopportune time, or wants to visit and you feel uncomfortable about it, politely decline. It’s okay to say “Thank you, but not right now.” and close the door. It’s okay to insist on privacy even though you’re sick.
And most importantly, find someone you can talk to about how you’re really feeling. This may be an empathic friend, cancer coach, social worker, health professional, counsellor, psychologist or family doctor.
And, as kindly as you can, let folks know whilst cancer is something you’re experiencing right now, it hasn’t become your identity. Cancer is happening to your body, but you’re still “in there” behind those eyes. Your name is not and never will be “cancer”.
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