What comes to mind when you think of cancer? Maybe you or a loved one have been diagnosed, or maybe the most interaction you’ve had with the disease has been through either John Green’s The Fault in Our Stars (2012) or the Terry Fox Run. Whichever applies to you, there’s one thing I’m sure we can all agree on: cancer fucking sucks.
On April 8, 2024, I was supposed to be in Rob Taylor’s Advanced Poetry class. Instead, I was in Vancouver getting diagnosed with cancer at the age of 22. A year of pain in my left leg, four different kinds of scans, and the first of what would be three biopsies had led to this moment. My doctor said I had either osteosarcoma or lymphoma. My first thoughts?
I can’t believe this is happening to me.
Of course this would happen to me.
As you peruse my tale, keep in mind that this is simply my experience and there is no one way to experience having cancer.
Cancer
Cancer is when some of your cells uncontrollably multiply to form a tumour that can spread to other parts of the body, also called a malignant tumour. Some tumours are non-cancerous, or benign, which means they don’t behave this way, but us lucky few get the life-threatening miscreants.
Causes of cancer
From bras to antiperspirants, it feels like every day I read about a new thing supposedly causing cancer, but what’s the truth? According to the Canadian Cancer Society, the majority of cancers are actually often caused by a blend of various risk factors like smoking, alcohol, unprotected sun exposure, certain chemicals, an unhealthy diet, and specific genetic changes.
Another major carcinogen? Age. The younger you are, the less likely you are to get cancer. Nonetheless, cancer is still more common in Adolescents and Young Adults (AYA) than some people may realize. According to BC Cancer, at least 9,200 people in Canada between 15-39 receive a cancer diagnosis every year.
Geoff Eaton, the founder and executive director of Young Adult Cancer Canada (YACC), who is also a two-time cancer survivor, shared with The Cascade that he believes the biggest misunderstanding surrounding AYA with cancer is simply that we get cancer, stating that he believes people usually associate cancer with either children or seniors.
“It’s the young adult group in the middle. We’re overlooked.”
Before I was diagnosed, I didn’t think that young adults got cancer as much as they do. When my leg was in pain for over a year, not once did I ever actually consider that I had the disease, to the point where my friends and I would jokingly say “maybe it’s cancer” because it seemed like such an impossible scenario.
Something that really sucks about cancer? Regardless of age or health, it can still affect anyone, which begs the question: what happens then?
Chemotherapy
After another biopsy, I was diagnosed with diffuse large B-cell lymphoma (DLBCL) — the most common form of non-Hodgkin lymphoma. After receiving my diagnosis, my doctor told me that I needed chemo.
“I’m going to lose my blue hair,” I said, remembering what I could about chemo; the trademark bald look came to mind.
“You’re going to lose your blue hair,” my doctor confirmed.
“I’m not going to be able to work.”
“You’re not going to be able to work.”
Even though I’d have to wait until I actually started chemo to know for sure if I’d lose my hair, the doctor’s repetition made things easier — like he was meeting me where I was as I processed. Some people lose their hair during chemo and some don’t, just like how some are able to work during treatment and others aren’t. Unfortunately, I drew the short straw both times.
Day one
On May 13, 2024, I started my first round of treatment and the icy drugs flowed through my IV for three hours. When my parents and I left the hospital, I felt surprisingly fine (and super hungry) so we grabbed a bite from my then-favourite restaurant. Let’s just say, it’s no longer my favourite.
After inhaling a beef dip, I started feeling a little tired which quickly turned into absolutely exhausted. As soon as I got home, I collapsed onto the couch and passed out for a few hours. I might have slept through the whole night if not for what happened next.
Eventually, I woke up nauseous and a couple hours later, I was throwing up my dinner. Afterwards, I sat on the bathroom floor with my back against the wall and one phrase in my mind:
This is my life now.
The longest 126 days of my life
According to BC Cancer, 35 per cent to 45 per cent of cancer survivors (that is, anyone who has ever been diagnosed with cancer, including those still living with it) will experience serious mental distress at one point or another. While everyone is different, Eaton largely attributes the emotional challenges of facing cancer as an AYA to a heightened feeling of loneliness.
“There’s this really significant life experience that none of your peers have really had yet. And that in itself, despite how loved and supported you can be, can create this really profound sense of isolation.”
Due to chemo’s effects on my immune system, there were times when I couldn’t leave my house, which became increasingly frustrating. While I was grateful to have my family visit nearly every day, after weeks of being house-bound, I missed my friends, my co-workers, even the occasional Karen. It felt like I was reliving the COVID-19 pandemic except I was the only one in quarantine. All along, one question haunted me: what if my treatment doesn’t work and I’m just wasting the time I have left?
Days when I could go out were bittersweet. I could see my friends and do something other than take pills, check my temperature, and track my bowel movements, but my cancer followed me everywhere I went. It was in the jealousy I felt toward strangers with hair down to their hips. In my pity toward carefree children who would one day have to face adult hardship. In the knowledge that my freedom was temporary, and that next week I’d be back at the hospital for more treatment. By the halfway mark, I was incredibly emotionally exhausted and just wanted chemo to be over.
Young Adult Cancer Canada
After confiding my emotional turmoil to my counsellor at BC Cancer, she suggested that I check out Young Adult Cancer Canada (YACC), a non-profit for cancer survivors aged between 15-39. After browsing their website, I signed up for one of their virtual peer-led conversations called YACC Chats — and I am so glad I did.
I was super nervous before my first YACC Chat; I didn’t know what to expect, and I was afraid of saying something dumb that would cause the group to reject me right when I needed a community the most.
My anxieties vanished as soon as I joined the call, when a few group members excitedly complimented my Kitty Ear Headset. Right away, I knew that these were my people and YACC Chats quickly became part of my weekly routine.
Through YACC Chats, I was given a space to talk about hard topics like hope, grief, body image, and dating after diagnosis, with other AYA cancer survivors. It was validating to hear the same feelings I’d been struggling with be expressed by other cancer survivors. And while you might think that a group of cancer survivors would be a sad and morbid place (which it sometimes is), I’ve also experienced a lot of laughs during YACC Chats.
There are many unique challenges that AYA cancer survivors face, which is what makes organizations like YACC so vital. Eaton detailed that one obstacle is often learning how to navigate the health system for the first time.
“Most young adults haven’t had a big, heavy dose of interaction with the health system … so right away, we’re engaging with a system … that we’re not used to being involved in.”
Having cancer as an AYA can be even more uniquely challenging because of our proximity to our peers and the consequences of feeling detached from them.
“I would argue our lives are heavily connected to peers, more intensely than in any other state of life … so that isolation piece then becomes even more challenging for us.”
Other than creating safe spaces for AYA cancer survivors, YACC is also working to make change through their Recover Study. Hoping to incorporate data from 2000 Canadians of all ages who were diagnosed with cancer under the age of 40, Eaton explained that the study will research what the cancer recovery process looks like for participants over a number of years.
“There’s not a lot of data around most of the young adult cancer experience, so YACC is working to change that … [and] that’s going to allow us to be delivering better programs, educate and inform the community, the young adults, as well as the many in and outside the health system.”
Safe to say, if a young adult I knew received a cancer diagnosis, I’d tell them about YACC.
“To borrow a line from a YACCer, ‘[I’m] used to people who are understanding, but [in] YACC, I found people who understand.’”
Side effects
Chemo is hard on one’s mental health, but what about physical health?
For some people, side effects get worse with each cycle. However, they can also improve over time for people like me. From nausea and fatigue, to eye-sensitivity and constipation, I experienced a range of side effects, especially during my first cycle. My veins burned after treatment, stomach-aches were frequent, and I lost feeling in the tips of some of my fingers.
While my experience with chemo-related nausea was limited to the first couple days of each cycle, it could be nonetheless immobilizing — my worst experience being the night I spent laying on the bathroom floor for what felt like hours, waiting to throw up.
It’s impossible to say this enough: thank fuck for modern medicine. During my third cycle, I was prescribed another anti-nausea and the symptom dramatically decreased. Just goes to show that you should never be afraid to ask for more help if you feel like you need it. In fact, Eaton believes that those who advocate for themselves usually receive the best care.
“These systems that we have created do a lot of beautiful, amazing things every day, but they work best when they’re pushed.”
Hair loss
After 17 days of chemo, my hair was falling out in increasingly large clumps and I decided it was time to shave it all off. At first, I was excited. I’d always loved trying out new hairstyles so I figured the bald look would be just another experience, but eventually, it became hard to shake the feeling that a vital piece of myself was missing.
I’d look in the mirror and not recognize the bald girl staring back at me. I’m not saying women can’t be both bald and beautiful (have you seen Cynthia Erivo or Sinéad O’Connor?), I just didn’t feel like one of them. Moles, stork bites, and pimples that my hair had once hidden were now out in the open. My eyebrows were thinning and my eyelashes were falling out. I missed feeling pretty, but more than that, I missed who I was before cancer and my reflection was a constant reminder that I would never again be her.
Thus began an era of experimental wigs, toques, and bucket hats that lasted until shortly after treatment.
“So, you’re good now, right?”
Define ‘good.’ Both myself and Eaton want more people to understand that while treatment may be over, survivorship comes with its own challenges.
“People think it’s over when your hair grows back … [but] recovery from cancer takes longer than treatment.”
On Aug. 26, 2024, I had my last treatment. After posting a video of myself ringing the bell, I received well-intentioned messages celebrating my “inspirational” victory over cancer, and some even expecting my return to work. As grateful as I was for everyone’s kind words, I couldn’t ignore the gnawing guilt that I’d somehow misled my friends and family. More than that, I dreaded having to disappoint them by clarifying that I wasn’t in the clear yet, and wouldn’t know anything until my scans all the way in October.
Thankfully, my scans did come back clear and I have been officially in remission since November 2024. All I’ll say about that is words can’t describe how relieved and lucky I feel to be where I am.
Still, survivorship is hard. There’s the potential for long-term and late effects of chemo, like fatigue, heart issues, and brain fog (or chemo brain). Some cancer survivors also experience mental health issues after treatment like PTSD, anxiety, and depression.
While going into hospitals isn’t traumatic for me in and of itself, there’s two specific procedures that I dread ever having to repeat: a bone marrow biopsy and having an IV in my hand.
If you ask me, the healthcare system’s attitude toward bone marrow biopsies is far too casual. Before my procedure, I was told things like: “you might feel some discomfort,” and “it’ll just take 20 minutes.” I was in no way prepared for the sharp, stinging, pressing pain that I endured. Afterwards, when I said that if I ever had to have another one that I wanted to be put under, I was told that they “don’t usually offer sedation for bone marrow biopsies.” While the procedure is tolerable for some patients, sedation should be more accessible to the rest of us — at the very least, healthcare providers should stop sugar-coating the procedure.
As for IVs, I recently had another PET scan and, while I’m used to getting those IVs near the crease of my elbow, the only vein that the nurse could find was in my hand — the same place my chemo IVs had been. The whole time, I had to remind myself that it was just cold saline and radioactive sugar that I felt running through my IV, not chemo drugs.
When my leg starts hurting again, or any part of my body really, I fear that my cancer is back. There’s this nagging pressure that I should be making the most of my time while I’m still in remission, because who knows what could happen tomorrow?
Eaton put words to this feeling that for some AYA cancer survivors, it can feel like time is of the essence.
“When you get cancer in your twenties, it’s a striking reminder that you might not have 60 years left to make your mark.”
On the other hand, after receiving a life-threatening diagnosis, finding the motivation to plan for my future is difficult. Every now and then, I think to myself, what’s the point? I could have a cancer recurrence anytime. My future is not guaranteed. But then I remind myself that this is true for everyone — even people who have never had cancer.
Got cancer?
First off, there is no right or wrong way to cope with a cancer diagnosis. The best advice I can give you is listen to your healthcare providers, advocate for yourself, track your health, and as my counsellor always says, be kind to yourself. Some things that helped me was having an emotional outlet like journaling, joining YACC Chats, and (to the dismay of my credit card) retail therapy.
You’d be surprised at the amount of funny cancer merch you can find on Etsy. From a chemo bag with a Mean Girls (2004) reference on it to a cancer-related colouring book, one seller in particular, Ohyouresotough, has some hilariously dark merch that you know has made its way onto my credit card statement.
Like many people who’ve experienced trauma, I cope by making jokes about it. The Cancer Patient, a non-profit that began as a hilariously unserious Instagram meme page in 2018, shares memes that feel like a collection of inside jokes for us cancer survivors. Truly, this page has a way of making me laugh at even the darkest topics.
Finally, I encourage you to read about experiences from other AYA cancer survivors. With free digital copies on their website, the magazine Elephants and Tea contains articles written by AYA cancer survivors. To me, the magazine has been helpful with putting words to some of the complex emotions I’ve had regarding cancer.
What to do when someone you know has cancer
Many people might want to help a loved one with cancer, but are just not sure how, causing a feeling of powerlessness. Eaton encourages everyone to show their support however they can based on their unique relationships.
“I would encourage you to have your response mirror the significance of your relationship, with the significance of the events that they’re going through. That’s a really personal thing, and there’s no formula on that.”
Eaton further emphasized the importance of expressing our care for one another on a more regular basis without cancer prompting us — even if it’s someone you haven’t spoken to in years.
“I don’t think we need to wait for cancer to come into our life to tell other people how we feel about them.”
Whether it’s sending a text, making a care package, running errands, or just listening to us complain, however you’re best able to support a loved one with cancer is the way to go.
Let us feel our feelings, dammit!
Now, I get regular bloodwork and see my oncologist every few months to check for signs of recurrence. It’s not fun feeling like I can only make plans three months in advance, but if having cancer has taught me anything, it’s that sometimes you get dealt a bad hand. Some days, I feel like screaming at the world for its cruel unfairness, and other days, I simply sigh and shrug my shoulders — and both reactions are valid.
There is sometimes this mindset that cancer survivors are these brave and inspirational warriors who never cry or lose hope. While some cancer survivors find strength in this idea, others like myself just feel uncomfortable. During treatment, someone once literally grabbed my shoulders, looked me in the eye, and told me that I had to stay positive, like my authentic emotions were flaws that needed to be hidden. I’m tired of facing criticism for voicing my fear and grief instead of constantly smiling my way through cancer.
Like I said, cancer fucking sucks. Going through cancer treatment, watching someone go through treatment, coping with survivorship, losing someone to cancer, and dying of cancer — it all sucks. While sinking into a pit of depression about it isn’t ideal, neither is toxic positivity. Instead of expecting us to swallow our pain, we should all be supportive of one another and try to get through it together.
