First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.
Illustration by Chelsea O'Byrne
Let me say for the record that I’m glad I’m not dead. Really glad. I’ve avoided the worst-case cancer outcome, knock on wood, but dodging that bullet doesn’t mean I’m fine now. Cancer patients never really get back to their precancer selves. They know they have to accept the “new normal,” but accepting it doesn’t mean it’s fine.
My hair has grown back; I’m no longer weak and feverish. I look my old self, but that’s an illusion. I’m aware of the changes to my body and the ever-present cancer reminders, even though they’re not apparent to others. Some changes are small, for instance, my taste buds went haywire during chemotherapy. Now, I can no longer stomach several things that I used to enjoy: coffee, mac ‘n’ cheese, banana bread, popcorn and chocolate ice cream. Sometimes just smelling these things makes me retch. Dang, why couldn’t I have developed an aversion to liverwurst and kombucha? I could live without those.
But chemotherapy didn’t just mess with my taste buds, it also caused neuropathy – a loss of feeling – in the toes of my right foot. The neuropathy began five years ago, and the doctor says that if feeling hasn’t returned by now, it’s unlikely it ever will.
Can I live with numbness and can I forfeit a few favourite foods? Of course I can, but that’s the easy stuff. I had six cancer-related surgeries and I now have 61 linear inches of surgical-incision scars. My body looks like a road map. Slicing and dicing my body that much left me with an abundance of tight, knotted scar tissue that causes discomfort, no matter how much massaging I do or how much lotion I use. Does this completely sideline me? Heck no, but it’s annoying.
But wait, there’s more! As a result of breast cancer, I developed lymphedema – swelling caused by a buildup of fluid – in my left arm. At its worst, my left arm was 62 per cent thicker than my right arm; most of the time it’s around 50 per cent thicker.
The swelling happens anywhere from my fingertips to my shoulder and the feelings range from a dull throbbing to tingling and burning, to feeling like the skin is about to violently rip open. I regularly do exercises, wear compression sleeves and see a physiotherapist to manage the condition. I’ve learned to live with it, but it’s definitely not fine.
I’ve chatted at length with other cancer patients about the “you” that emerges once the worst of cancer treatment is finished. Every patient I spoke with said she wanted to scream when a well-intentioned person smiled and said: “You’re fine now!”
My friend and fellow cancer patient Kimberly was born in Toronto but grew up in Europe. All of her family is overseas. She would love to go and visit them but she can’t, even before COVID-19. Kimberly developed heart problems as a byproduct of her cancer treatment and her doctors will not allow her to fly. Yet, friends high-five her and say: “You’re fine now!” Kimberly just offers a Mona Lisa smile and says nothing.
Stacia was diagnosed with cancer about a year after I was and a mutual friend introduced us. Stacia is quick to make a wisecrack and she can get people laughing in a heartbeat. But behind the laughter is anger and frustration. The daily cancer meds, which she must take for five years, cause headaches, nausea and diarrhea. She can’t remember what it’s like to have a physically good day. She now ranks days in terms of “awful,” “less awful” or “really awful.” But with her frizzy blond hair grown-in and her weight back to normal, friends look at her and cheer: “You’re fine now!” She doesn’t even bother trying to explain how she really feels. She thinks that now that she’s out of the danger zone, she has no right to complain. So, the anger and frustration remain bottled up.
Denise and I met in a cancer support group. She had just started a new job and a new relationship when she was diagnosed with cancer, a few months before I met her. She jumped through all the cancer hoops: chemotherapy, medications and surgeries, including a bone marrow transplant. The last time I saw Denise, her green eyes had a sparkle; she was finally excited about her future. Denise had just returned to work, plus she and her partner were planning a trip to Spain later that year. On her first day back on the job, a colleague beamed and said: “Wow! You look normal!” Denise died eight weeks later. She was in her early 30s.
I met Jacqueline during treatment – I’ll forever associate her with the generic beige recliners in the Sit & Drip area of the chemotherapy ward. Jacqueline is a woman many others would envy – at least until they hear the word cancer. She has brains, money, looks, talent, a gorgeous house in Leslieville and a handsome, supportive husband. But chemotherapy and long-term meds have killed her sex drive. “We go to bed each night and I think: Just let me read my book,” she told me. She confided that she and her husband haven’t had sex in over three years. Jacqueline scoffs when she hears the words “you’re fine.” “After all this time, I’m still not okay,” she says. “I resent the hell out of cancer.”
And then there’s Chloe, whom I met at a party. Chloe is bubbly and buxom, with a smile that lights up the room. But by the time she was diagnosed, the cancer had already spread to her bones. She takes a cocktail of meds and chemotherapy to try to stop the cancer from spreading even further, but Chloe knows she’s living on borrowed time. Her energy levels are really low and she finds that she has to be parsimonious with her time in the way cheapskates are with their money. Housework, especially laundry, is at the bottom of her priority list. Once a week, Chloe goes to her guitar lesson. Music lifts her spirits and playing makes her happy, even though she’d be the first to admit she’s not very good. Chloe’s friends hear that she’s still learning guitar and they rejoice. She must be fine now, they reason, otherwise why would she continue with the lessons? Chloe shrugs her shoulders and wonders: “Don’t they realize what metastasized means?”
Besides the physical cancer reminders, for all of us, there is also anxiety and fear. Each MRI, ultrasound, CT scan, mammogram, X-ray and blood test has the potential to deliver devastating news. There’s angst and sleepless nights leading up to doctors’ appointments. Hearing that the test results are normal, that the scan came back clean and clear allows the cancer patient to exhale. She’s okay for now, the bad news didn’t come, which is fabulous, but she’s still not quite fine.
Jill Edmondson lives in Toronto.
Sign up for the weekly Parenting & Relationships newsletter for news and advice to help you be a better parent, partner, friend, family member or colleague.