'I don't want to lose who I am': How a brain tumour messes with your head

Gaetan Benoit is coming to grips with a new sense that every year could be his last.

At 41, Gaetan Benoit is learning about life with a 2 to 5 year deadline

Gaetan Benoit's wake-up call came with a sudden seizure that turned out to be a sign of terminal cancer. (Pierre Benoit)

Contributed by Gaetan Benoit

"Y'a quelque chose qui va pas, Katrine." 

Something's wrong. 

First, a tingling in my left arm. Like a small tremor, my world shakes a little. 

But I'm from the Prairies, these aren't the signs of an earthquake. And I don't have epilepsy.

Then things go sideways, and conversations of morning coffee turn to full on convulsions. 

I guess I'm not having that americano. 

Gaetan and his cat, Limoilou, enjoy a good couch and a good book on a more ordinary morning. (Katrine Deniset)

They used to call it a "grand mal" seizure, but apparently the name was too vague or too French. They've found a term that rolls better off the tongue: a generalized tonic-clonic seizure. Scientists don't always make the best linguists.   

I'm gonna stick with grand mal. The great evil. Not because it was particularly painful, but because it just seems to capture the gravity of the moment. The hinge on which my life has spun.

Now, there is a before and an after.  

The after begins in the emergency room. Scans, blood work, and doctors who bring out the drill. Let's bore a hole into this guy's skull so we can get a better look at what's going on up there.

"Are you guys sure about this?" 

The diagnosis

As the drill bit spins, so does the mind, and the heart. And this is when they start introducing you to the terminology for the new semester.

Lesions, glial neoplasm, frontoparietal, astrocytoma… 

"Pardon? Can you give me the Coles Notes on this one, doc?"

"You have a malignant inoperable tumour in your brain."

"Oh. Ok."

"2 to 5 years."


(It sounds like an inverted prison sentence. Given the choice, I'd probably take the time with the possibility of parole.)  

"But… Can I still have a beer every once in a while? How about a smoke? What about psychedelics? Can my girlfriend and I still be intimate?"

Maybe? Ok, I can take 2 to 5.

Spreading the word

Then the news must be shared, and the story must be told. First, in heartbreaking video chats from hospital beds and sidewalks with my closest and most beloved: girlfriend, parents, brothers and sister, and their partners. The wound is fresh and the emotions are overwhelming. Then it's a series of phone calls to relatives and friends and messages to ever-expanding circles of loved ones.

But with every telling, the story loses its poignancy. A pre-taped message begins to emerge. I start using words like "deepened" and "distilled" to talk about love and life, for effect. My story becomes a performance, a sort of monologue.  

I suppose it helps to forget about that 2 to 5 year sentence. 

Gaetan and his girlfriend, Katrine Deniset, take time for a break on a bike ride in downtown Edmonton. Something they can still do, even after chemo. (supplied/Gaetan Benoit)

The scientists may not be the best at naming seizures, but they've gotten pretty good at treating their patients. I'll take that trade-off. So it's radiation and chemo for me.  

But wait: there are alternative suggestions coming in from the well-intentioned and (sometimes) ill-informed. 

My options

"Elderberries," says my girlfriend's pedicurist. 

"Hawaiian spirulina," offers a friend on Facebook. 

"Have you tried Keto?"

"How about CBD, my friend?"

Duly noted. But I think I'll still head in for my daily spin in the medical microwave. Thankfully, the side effects are negligible. For me, hair loss. For Katrine, living with a more irritable and impatient partner. I'm blaming the cancer for that.    

Oh yes, I almost forgot, there's a 5 per cent chance of serious cognitive or physical impairment from the radiation. 



I don't want to change. I don't want to lose who I am.  

I'll take 2 to 5 but just please, let me be me, all the way. 

Leave me my morning coffee with Katrine, my summer weekends with my family, my canoe trips, my outdoor shinny games, and my late-night sing-a-longs.

Please, can I keep those?

You know what? I think I'll have that americano after all.

Gaetan and Limoilou still have sunsets to watch from their backyard. (Katrine Deniset)