January 27, A.K.A. Classy Glassy Day to my family in honour of my first prosthetic eye, is the day each year that I celebrate being cancer-free. Although I underwent a few rounds of precautionary chemotherapy after the final enucleation, this day will always be near and dear to my heart. After all, it’s the day that I became blind and the cancer was eradicated from my tiny body.
True, the cancer was gone and that part of my life was in the past. It was now full speed ahead into learning braille, using a white cane and adjusting to life as a six-year-old without sight. But what everyone failed to mention was the fact that what I had just endured was traumatic, and that I would live with that trauma for the rest of my life. Yes, the physical cancer was gone, but the psychological ramifications would be a constant fight.
I was in middle school, deep in denial about my blindness, when I was handed a book of reports written by a fourth-grade class… about me. I flipped through it, astounded at what I read. I recall one report vividly which stated explicitly that the doctors expected me to be depressed, but I wasn’t.
“I was supposed to be depressed?” I said to my mom, shocked. I hadn’t heard about this. Why did they think that? I wasn’t depressed.
The Clock Syndrome
“I’m going to die,” I announced to my therapist one afternoon when I was 20. “I’m not going to live past 22. I’m going to die young. You just watch.”
Spoiler alert: I lived, and am now a grand ol’ 25. But what was the deal with 22? It’s hard for me to explain without fearing that you’ll think I’m crazy, but if I write for anything, it’s to normalize the unspoken experiences that many people are too afraid to say aloud.
Growing up, I saw my future stretching before me like a road. I could see the twists and turns and the landmarks that I would pass by on my journey through life—high school graduation at 18, travelling abroad at 19, earning a university degree at 22, and then—
That’s where the road stopped. I had no more visual concept of what my life past university could be. It was blank.
To me, the emptiness of the road meant there was no road at all.
But I kept this to myself. To be “normal,” I dreamt about what life might hold for me, and I even planned parts of it. I wrote a list of my favourite baby names, I designed wedding invitations when I was 15, and I speculated at what kind of old lady I’d be. But deep down, I knew it would never happen—I would die before I got the chance.
My therapist and I called this the Clock Syndrome. Many days, it was a physical weight on my shoulders and I felt the tick tock, tick tock, thumping in my brain like a hammer. “Don’t waste your life,” it whispered. “Pack in all the experiences you can now, before it’s too late.”
As a result, I raced through my late teens and early twenties. I graduated from university in three years, enduring a five-semester streak that ran me into the ground. I pressured myself to get married and have children before I lost my opportunity to, and I made myself a deadline to be a published author by 25.
The fear that I would die young was paralyzing.
And every time I contemplated my inevitable death, it was because of cancer. I had it once, of course I’d get it again. And I wouldn’t be lucky enough to survive twice. But what kind of cancer? And when would I get it? Would I have symptoms? What if I had it now and just don’t know it? Thus, I fall into what I term “cancer spirals,” and they look a little something like this:
- I feel fatigued. It must be leukemia. Wait, where did that bruise come from? Am I having a night sweat or am I hot because I sleep under four blankets? This hasn’t happened before—it must be cancer.
- I’m not on my period, so what’s this discharge? Is that a sign of ovarian cancer? Cervical? Have my periods been extra painful lately? Wait, was my period on time last month? It must be cancer… I’ve always been regular.
- My heart is beating faster than normal. I heard that advanced lymphoma can cause rapid heartbeat. Let me check the results from my last blood test; is anything out of the ordinary? What if the blood test doesn’t catch it, and then it’s too late?
- Do I want to undergo chemotherapy again? What about immunotherapy? Where do I get a wig? Maybe I should get one now so I have it… just in case.
If you’re exhausted reading that, welcome to my brain. These cancer spirals are as normal as dipping chocolate chip cookies in milk. I don’t even have to have symptoms to fall into the world of medical articles, diagnosis stories, the latest experimental cancer treatments, and which secondary cancers to be on watch for. I live every day, expecting to be thrust into this reality. Yet, it mightn’t ever happen. I might die before I turn 26, or I may live another 70 years in perfect health.
But, what if I do get cancer again?
It’s that what-if that keeps the clock running. And every day, I wonder if I’ll ever outrun it.
September is Childhood Cancer Awareness Month. It’s a busy time, with fundraising for cancer research and programs to support the children and their families taking their well-deserved place in the spotlight. But amidst all the activity that September brings, take a moment to remember the quieter side of survivorship.
Remember the ones who live each and every day with the fear of relapse and recurrence. The ones who won’t tell you that they lay awake, examining their body for any potential threat. The ones who have to leave the room because the smell of bananas triggered a memory from the hospital. The ones who have trouble remembering things because of the chemotherapy. The ones who you didn’t even know had cancer.
Take a moment this September and remember us. Our stories are still unfolding, and at least for me, all I pray is that with each page turn, every childhood cancer survivor will know that they are loved, supported and heard, no matter what happens.