Don’t Call Me a Survivor
Rethink is honoured to be the guest editor for Wildfire Magazine’s Identity and Aftermath August issue, which is dedicated to highlighting the struggles of life after cancer diagnosis.
Here is Brooke’s story.
Cancer has a way of permeating every aspect of your life. It certainly did with mine. Over the past year of recovery from active treatments, I learned that as much as I tried to deny my identity as a cancer patient, warrior, fighter, survivor, whatever you wanted to label me, I just couldn’t. As active treatments were done, the surprising NED declaration after simultaneously being diagnosed as metastatic after months of, is this funky spot on my liver cancer or isn’t it, all I wanted to do was close this chapter and move on to the newer, shinier me. I, along with everyone else, thought I could go back to normal. I realize that expectation was so unrealistic and that moving forward was one of the hardest parts of this experience.
When I was first diagnosed in the summer of 2018, I tried to deny my cancer status. My life has seen its share of hardship where toughness and strength were adjectives often used to describe me. And I won’t lie, even I had the “Why me again?” cry more times than I can count. But I was tired of putting out fires and being called brave and strong, a fighter. I just didn’t feel that way because I would have never chosen this for myself.
Still, I did the treatments as prescribed. I researched every day on how to add integrative therapies to my plan. If I thought it would work, I tried it. I made what feels like a million lifestyle changes and denied myself my favorite things (read: wine) in order to prove to everyone that I wasn’t a hopeless statistic. Getting better was my full-time job and with like any job I’ve ever had, I went at it 100%. I was determined to see my son grow up. Cancer would not be the end of my story.
Despite my determination and will to live, I refused to engage with cancer too publicly. I rarely updated anyone on social media platforms and I never took part in cancer support groups. The social media support groups were a reminder that women like me die every day from metastatic disease. It was too much for my mental health to handle and my focus had to be on surviving. I would also never be caught without my wig in public because I didn’t want to stand out and be stared at with “sad eyes.” A lot of women with cancer would agree that it’s not really about the hair when it goes. It’s really about how it marks you as “sick” to the outside world like a big bullseye that suddenly makes it all too real.
So, when the treatments ended and the unexpected cancer-free status was declared, I didn’t ring the bell. I didn’t want the claps or adulation from others like me. I just wanted a quiet exit back to the kingdom of the well and out of the kingdom of the ill as Susan Sontag wrote in her book Illness as a Metaphor.
I was so determined to move forward and get back to the old me—wife, mama, provider—that I ended up pushing myself too far. I went back to work and encouraged people to treat me like they did before I was sick. This was my new chance at life, so please don’t pity me.
But after all the excitement died down, the calls of support lessened and the appointments that once kept my calendar full started to spread out, I realized I hadn’t processed what had just happened to me in the past year. I had been poked, prodded, cut, poisoned, burned, given a death sentence, then not, and we all expected that I’d just move on like nothing happened. I was now in menopause and taking a hormone blocker to keep the cancer at bay, which came with its own side effects. I was hot, sweaty, and developed insomnia that kept me up all night despite the fact I couldn’t get through my day without complaining how tired I was. And although I was one 100% okay with going flat, shopping for clothes was a tearful experience. The scars were constant reminders.
When I asked my husband what I was like during treatments versus after, he noticed the same things I did. He said, “You were better than you are now. You were determined to get better. Now that you are, you’ve become afraid of the world. You’re so set on proving to everyone you’re still the same you, that it’s making you miserable.”
Everything he said was right.
Anxiety was never anything new to me, but the anxiety I felt after I was discharged from active treatment was crippling. Despite being so confident in active treatment that I’d get better, when I was no longer being treated, I’d worry obsessively about relapsing. All that mental healing work I did previously started to crumble, as if I didn’t have to do it anymore because I was better. I suffered in silence for a long time because I hated admitting I was not okay. By rejecting my cancer identity, trying to be as normal as possible, and working through my anxiety alone, I realized my husband and child were suffering. My work relationships were suffering too. I just wasn’t myself and it wasn’t fair to me or anyone else.
After quite some time in self-reflection, I realized that I just couldn’t deny what had happened to me any longer. Instead of running away from an identity with cancer, I decided to embrace and accept who I am now, instead of forcing the version I no longer was. There are still parts of the old me in there but now I have all these other facets to me that I did not before. I’ve learned to slow down a little and breathe everything in. I don’t think the worry and scanxiety will ever really go away, but now I talk more openly with friends and family realizing that they still want to be a support even if treatment is over. I’ve decided to share my story and be more open in hopes of helping someone else, including myself.
But please do not call me a survivor. Sure, I’m currently surviving, but until I reach old age and die of something else, I cannot fully say I’ve survived breast cancer. Call me a thriver instead. That’s a lot cooler. – Brooke Perry