THE QUIET SIDE OF CANCER SURVIVORSHIP — LIVING IN A WORLD OF WHAT IF

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.

Yes.

And no.

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—
Then what?
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.

LOOK UP! — FINDING GOD WHEN I FEEL BLIND

Starlight Serenade

Sing, oh ye stars above!
Sing upon this earth with love.
Sing thy song with beauty inlaid
Sing your starlight serenade.

Sing to those who lie awake
Sing for the brokenhearted’s sake.
Sing a lullaby for those afraid
Sing your starlight serenade.

Sing to shine thy Father’s light
Sing to give His strength and might.
You’re fearfully and wonderfully made
So sing your starlight serenade.

© Rhianna McGregor

It was a seventeen-year-old Rhianna that wrote Starlight Serenade, sitting in the window of the spare bedroom at midnight. The cul-de-sac was silent except for the lone cricket singing his own serenade into the night. A neighbour’s fountain was trickling and if I settled my thoughts and stilled my heart, I could almost believe that I could hear the ocean. But what I heard above all this was the night itself speaking to me.

It was my escape and my safe place. In high school, when my life was shaken up like a snow globe and didn’t know how to settle, I turned to the night as a means to cope. The spare bedroom beside mine, which once belonged to my brother before he left for college, offered me a window ledge wherein I would sit, wrapped in a blanket with the window open all the way and only a screen separating me from the outside world. The breeze was gentle, constant, and I always wondered what the wind had seen; had it come from the sea, or had it visited someone else who was up late, crying over a broken heart? No matter what I was going through, the night was always there.

Most nights found me in the window, praying, crying, writing poetry, or a mix of all three. It was here that, all at once, I felt whole and distinctly broken, lost but safe at home, abandoned yet I was wanted.

It was where I met God.

But there was a catch. As with all things beautiful, they are never without heartache.

Here, my heart ached because in the silent beauty of night, I was acutely aware that I couldn’t see it. Here, I was blind and there was no escaping the truth. I couldn’t lift my eyes to the sky and get lost in the sea of stars, too numerous to count. I couldn’t make friends with the man in the moon, nor wish upon a shooting star like I had as a child.

I was blind. And my body knew it. This article discusses phantom eye syndrome, a condition classified by the presence of phantom vision, phantom pain or phantom sensations that individuals who have had one or both eyes enucleated can experience. In the years since my eyes were removed, I have often felt like I fit into the category of phantom sensations. But whether I am clinically accepted as experiencing phantom eye syndrome or not, I do not know, but what I do know is how it feels to want to see and not be able to.

I describe this sense of “feeling blind” to my friends and family as reaching for something but you come up short every time. Your fingers graze the edge, you strain and stretch to grasp the thing you so desperately want, but you can’t. It’s just a little too far, and no matter what you do, you won’t be able to reach it.
This is how my eyes feel. They want to see, and it’s almost as if they believe that in trying hard enough, they will. But they can’t. No matter how much they strain to encompass the visual world, they can’t.

But don’t think that I move through every moment of my life feeling this yearning to see that will never be satisfied. There are a handful of circumstances that I’m aware trigger these phantom feelings. And when they arise, I get myself into wide, open spaces. These phantom feelings aren’t dissimilar to claustrophobia in that I feel trapped in small spaces, so fields, beaches, even empty streets can help to alleviate the anxiety.

Here is a brief list of those circumstances:

  • The night sky
  • The sea
  • Looking through photo albums

Feeling blind doesn’t stop me from going stargazing or reminiscing over old photos. But I do keep mindful of its weight which at times, can be very heavy.
It reminds me that I am different
It reminds me that I am missing out on an entire sense and world of experiences that many people take for granted.
It reminds me that the visual memories I rely on to build new ones are quickly fading with time, and I’m working with limited resources that cannot be replenished.

But it reminds me too, that it won’t always be like this. CS Lewis said that “if I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world.”

Being outdoors in the middle of the night is when I always feel closest to God. And I often wonder if that something that I’m reaching for but cannot grasp yet is God himself. I am a fallible human, incapable of grasping the truth of who God is and what His plans are for my life. I cannot grasp the ways of God or understand His thoughts in the midst of my humanity. Isaiah 55:8-9 says that “for my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. / For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

And when I look up into an endless sea of stars, I am reminded that the world is so much bigger than I am. And so is my God.


Is feeling blind frustrating? Absolutely, it can be. I believe that it is a physiological response to the trauma my little body endured at five years old. But can it point me to the one who is bigger than my blindness, more powerful than my problems, and in control of whatever happens in my life?

Yes. And that’s what I try to remember when the blindness overwhelms me and I cannot reach what I’m so desperately searching for. I take a breath, tell myself that it’s okay to feel it, and channel the overwhelm into my heart’s yearning for eternity with God. There, I will see Him and that’s the truth that keeps me going for my time here on Earth.