A Handy Guide For Talking to Cancer Patients

As I’ve talked with other cancer patients and their families about the weird and wonderful conversations we’ve had with others about illness, a list of faux pas has emerged.

THINGS YOU SHOULDN’T SAY TO CANCER PATIENTS (OR THEIR FAMILIES)

“Everything happens for a reason.”

This is the emptiest platitude, spiritual bubblegum, infuriatingly trite. It swats away a terrible situation as the means to some higher end. It inadvertently sends the message that a person’s pain is overblown or unmerited. Bottom line: It tends to make people feel belittled.

“I know exactly what you’re going through.” 

No. Even  two people with the same disease won’t have the exact same experience. Declaring yourself an expert on another person’s experience can make a patient feel frustrated, voiceless, or patronized.

It’s more honest and comforting to admit that you don’t know what that person is going through.

“Have you tried…?”

“The alkaline diet/ juicing / cannabis oil / thinking positively will cure you. Just look at this naturalnews.com article / YouTube video!”

You know who’s probably endlessly researched cancer treatments? A cancer patient. Often we never get to step off this merry-go-round of options, options, options: we’re dizzy from reading hundreds of pages of medical literature, juggling all the choices, and carefully curating a treatment plan that works for us. It never stops,and so weighing in, unasked, with what worked for your Aunt Agnes is probably unwelcome. Unless you’re asked explicitly, keep medical advice to yourself.
I mean, unsolicited advice is bad manners in general. Marching up to a newly diagnosed acquaintance and bellowing “YOU SHOULD REALLY BE DOING AYURVEDIC YOGA” isn’t just unhelpful – it’s rude.

“You’re actually lucky because cancer makes you appreciate life!”

Okay. Maybe someone’s bout with illness has made you appreciate life. Maybe it’s given you perspective. But declaring the afflicted person “lucky” is just insulting.

“Oh, you have [insert type of cancer]? I know So-and-So who died of that.”

AHHHHHHHHH.

It goes without saying that people don’t say these things maliciously. You mean well. You want to say the right thing. It’s just all so terribly awkward and disturbing. So what should you say?

GREAT THINGS TO SAY TO CANCER PATIENTS (AND THEIR FAMILIES)

I’m sorry. Is there anything I can do?

This  is perfect. Mix it up and use as needed: “That sucks. Can I help?” works! “Oh no. You’re in my thoughts” works too! “Well, shit. I’m here if you need me” is also apropos! All of these are versions of the same two statements: you’re sorry, and you’re available to help. That’s awesome! Yay!

I don’t know what to say.


You wish you could come up with something elegant and reassuring. Nothing comes to mind. Words fail you. If that’s the case, say “I don’t know what to say.” That simple statement is honest and  it shows  you care. It’s  appreciated.

She’s Not Dying.

Tomorrow I go to a hospital. I’m going to see the latest pictures of my brain: black and white scans on a computer screen, pixels loaded with implications for me.

Because tomorrow we talk options. “The tumour’s behaving like a glioblastoma,” said my surgeon a few weeks ago. It doesn’t look like we can wait anymore. Glioblastoma multiforme is the deadliest form of brain cancer. Median survival is fifteen months. No one survives.

Tomorrow I stroll into the cancer clinic, shake hands with my favourite oncologist, and he’ll lay my options out for me.

Which chemotherapy sounds best to you? There are plenty to choose from. And I’ll wade my way through treatment. Still, sooner or later, I’ll die. In the meantime, though, as cancer debilitates me, I am not dying.

I am living.

On Battles

They say I’m in a battle. That I’m a warrior. Sometimes I feel like that. The problem is that battles have winners and losers, and a warrior’s calibre depends on their bravery, determination and strength. Battles have endings, and mine only ends one way. If I “lose the battle,” that means I wasn’t brave, determined or strong enough, and cancer is not a matter of your character. It boils down to odds: will your particular cancer respond to a particular treatment? Flip a coin. It’s a question of probability, chance, sheer divine luck.

And my tumour is in my brain. Everything about me – my personality, my intelligence, everything – is located there. The tumour probably developed with my brain in childhood. It almost certainly shaped the person I’ve become. It differs from other cancers in that it isn’t just part of my body, it’s part of who I am. Rather than turn the tumour into a monster, rather than single-mindedly fend off death as long as possible, I prefer to live as vibrantly and joyfully as possible. I shift my focus from battling cancer to dancing with cancer. I don’t spend every waking minute trying to find ways to erase every cancer cell from my body; that’s not what beating cancer means. The only battle here is the fight to live gracefully, purposefully, happily. It’s as much a dance as it is a duel. If this is a battle, and cancer steals my pulse before Christmas, I’ll still have won.

If I’m 25 and still laughing from my deathbed, if I lived every day to appreciate the world’s beauty and change a little of its ugliness, if I strived for love and grace, then I won.

So tomorrow we talk options. Then, sometime, I’ll do more treatment. Sometime after that, I’ll die. Let’s hope it’s later rather than sooner, but either way, if it’s cancer that kills me and not a car crash or a serial killer or rabies (hey, even with terminal cancer, you never know), please don’t say I lost my battle.

I’ll win in the only way it matters, and I’ll be dancing on the way.

Carry On, Blind Girl.

After brain surgery, the world didn’t look quite right.

Something about my vision was peculiar. No matter how hard my eyes searched my surroundings, something was off. I couldn’t describe the distortion – it was harder to read, movies were harder to follow, and all the details of the world around me didn’t quite fit together the way they should.  It gave me vertigo. It was off-putting, disorienting. I hoped the eerie visual effect, whatever it was, would pass. It’s probably the drugs or brain swelling. Be patient.

Then I figured out what’s wrong: I have a blind spot.

Specifically, I have superior quadrantanopia. Imagine that your visual field, a rectangle, is divided into four quarters. I no longer have the upper left quarter. The entire upper left quadrant of my vision is gone. It’s a common result of damage to the temporal lobe.

The world doesn’t look right because I’m partially blind.

I don’t know if the part of my brain that processes the missing part of my vision is damaged or removed entirely. I’ll ask my neurosurgeon for curiosity’s sake. We’ll make an appointment with a neuro-opthamologist, who will determine the extent of the blindness and tell me if there’s anything we can do. If there’s anything I can do.

The literature suggests that rehabilitation isn’t possible.

But the brain is a miraculously adaptable organ; maybe, even if no one has done it before, maybe I can train my brain to see again. It’s not about what’s likely, it’s about what’s possible; it’s not about denial, it’s about hope.

Today marks two weeks since the operating table. Sitting in the kitchen last night, I told my mother about my blindness. I told her the news  matter-of-factly, almost meditatively, as though I were describing some interesting discovery  and not a handicap. She listened. There were no histrionics on either of our parts. Carry on. At one point I smirked. “It’s kind of cool,” I said, waving my left hand to my upper left, wiggling the fingers. “I don’t see it there. It’s like I have a ghost arm.” At another point, I growled, “Pisses me off. It makes it harder to read, and I want to take courses this fall semester.” She sympathized, made cocoa, and we smiled at each other.

We accept the challenge I’ve been given. We keep hope. We make cocoa and carry on. We don’t have to be blinded by our blind spots.

On Running.

If you’re trying to tackle something, be it a fitness goal or anything else, be determined above all else.

“Impossible is nothing.” -Muhammad Ali

It would be easy.

It was just under four months ago that I completed radiation for brain cancer. You’ll be tired afterward, they said. It may take you six months to feel normal again. You won’t have much energy. You might lose vision, have seizures, or just feel exhausted all the time. It might be hard to sleep.

These stark realities run contrary to the motivational quotes and armchair philosophy I see every day. “You can do anything you want to. Dream big. Veni, vidi, vici. The only thing that stands in your way is you.” It’s in social media, book titles, song lyrics: inspirational ideas that blithely ignore the fact that sometimes, what stands in your way is something much bigger than you. I find myself caught there, in the chaos where fact meets fiction, where slogans like “Impossible is nothing” seem like insults that dismiss everything about my condition. In that place, hope and denial are indistinguishable.

When I’m halfway through lacing up my running shoes and I suddenly lie back on the floor as a seizure slithers through my body, I might snarl at the ceiling, thinking of healthy people assuring each other that “Impossible is nothing.” Tell that, I might think, as the seizure runs its course, to an epileptic who risks her life every time she laces up her shoes. Pithy quotations like Muhammad Ali’s become harsh, tangible, in situations like these.

So there I am, my back on the floor, my shoes half-laced. Sometimes seizures come in clusters; I could be struck down by another one within minutes. I wait. My breath comes in little gasps. Any second.

A brain tumour can interfere with any and all physical functions. Sometimes I can’t get enough air. Sometimes my heart pounds for no reason. Sometimes there are flashing lights and phantom stenches; sometimes my left side feels markedly different from my right. But right here, right now, what’s possible? Can I finish lacing my shoes? I wiggle all of my fingers. My hands are still under my control. I sit up. I double-knot the shoes. I stand.

And then I run.

Running epitomizes something essential about life: what’s best for us is not the same as what’s easiest. I put one foot in front of the other because nothing benefits me more. I do it because as I redefine what’s possible for my body, it redefines what’s possible within the rest of my life. Running makes my world expand; it dissolves limits; it wakes me up.

Limits do exist; I rediscover them every day. But I can’t stop probing at them, pushing them outward as far as I can push them. It would be a waste. These miniature challenges, on a treadmill or a trail, morph into some of my biggest successes. It’s simple: I shouldn’t give that up.

Even though it would be easy.