The Unspoken Truths About Life After Cancer

The Unspoken Truths About Life After Cancer

One of the best kept “secrets” of the cancer world is something that is no secret to many of us. What is this secret you may be asking? It’s simple: life “after” cancer really really sucks. If a cancer muggle read that they’d probably shout at me, “At least you’re alive! Be grateful!” Yes, I’m alive, but I often ask myself at what cost? Am I truly living?

When I was first diagnosed with cancer in 2018 I remember posting a quote that said “this will be a chapter in my life, not the whole story.” I really believed that in the beginning. I figured I would have a few hard months of treatment and skip right back to my old life. Boy was I wrong. The truth is my life was thrown into the fire like a burning book and I’ve been on the sidelines ever since, trying to salvage pages and getting burned in the process.

I finished chemotherapy for the first time in April 2019. Dressed in a unicorn onesie and purple wig, I rang the bell with my family around me. I remember smiling in those photos but screaming internally. Who am I now? For the past six months my identity had been nothing but a cancer patient. Now that role was ending. I went from twice weekly monitoring by a team of people to silence. My oncologist had pushed me out the door and said, “Go live and I’ll see you in three months.” Go live? How? Is my life now defined by only the things I can accomplish in the next three months? What about the next six months or the next year? The weight of uncertainty hung heavy over my head. I knew that one bad scan would suck me right back into the black hole of cancer.

There was no talk about mental health before, during, or after my treatment. Aside from the typical Ativan prescription that most patients get… I had no support from medical staff. I even remember ticking off a questionnaire about depression prior to my final appointment. I was eagerly awaiting my doctor’s reaction to the questionnaire because I had ticked off almost every box. I felt hopeless. I felt lost. I needed help.

What did I get instead? Silence.

It was then that my unhealthy coping mechanisms started to creep in. As a childhood abuse survivor, I was used to pretending my problems didn’t exist. I made myself shrink down. I shoved my emotions and depression into the pit of my stomach. I decided to do the same thing with cancer. I would adopt the typical “brave” and “strong” persona of a cancer survivor—I would make my trauma easier to swallow for everyone.

With that in mind, I returned to work only six weeks after ringing the bell. I remember walking into the office for the first time and feeling like I was dreaming. It felt like I was entering into a life that I no longer fit into. I almost died, yet life seemed to go on like it always had. Within 10 minutes a coworker came up to me and asked if I enjoyed my time off. Enjoy my time off? You mean the six months I spent being poisoned every two weeks? That thought screamed in my head, but instead of expressing myself I just smiled and nodded. I should just be grateful I’m alive… right?

Immediately, I made attempts to simplify my life and focus on the things that really mattered. I resigned from my position and took a lower-level job. Everyone said I should take it easy now. I transferred to an office closer to home. Everyone said I should spend more time with my family. I rocked my post-chemo inch-long hair in the office. Everyone said I shouldn’t worry about my looks anymore. The more I attempted to simplify, the more complicated the thoughts in my head became.

Every night I found myself spending hours researching my cancer relapse rates. I read the relapse Facebook groups religiously, scanning for symptoms. Anytime I had a pain in my back or an itch on my leg my mind would start racing. I was trying so hard to let go of cancer, but it was like a gun to my head… impossible to ignore.

One day the gun went off.

I was driving home and it hit me like a brick. “Holy shit. I had cancer.”

That night I had a total breakdown. It was like my trauma came spilling out of me all at once. I was grieving. I was angry. I was depressed. I needed help. Thankfully, I have one of the most amazing husbands, and he was completely supportive. I took a leap of faith and opened up to him about everything. I was not brave. I was not strong. I was lost. I was so scared he would be disappointed in me. Which, of course, he quickly assured me he was not.

The following day I called my oncologist to ask for help with my mental health. A few hours after leaving a message for the doctor, I received a call back from the receptionist. She told me that the doctor had called in a prescription for depression medication and hung up. I was shocked that this was the mental health support I was being offered post-cancer. Sadly, this is a common occurrence in the cancer community, especially for AYA patients. An oncologist is the best person to treat cancer, but not so much a patient’s mental health. This has to change.

There are many painful truths in this article so far; necessary, but painful. However, there is true change on the horizon, and it’s a movement being cultivated in communities across social media. For the past two years myself and others such as “The Cancer Patient” on Instagram have started openly speaking about the realities of cancer. We do not filter it. We do not present the information with rose-colored glasses. We also do not shut up about it just because it makes others uncomfortable. Our collective voices have become small beacons of hope for many patients across the world.

I have heard from so many newly diagnosed patients that the cancer community via social media has helped them survive cancer. Not survive physically, but survive mentally. When you are facing something as devastating as a cancer diagnosis, the ability to truly be “seen” by another person is invaluable. It helps you to feel normal. It helps you to find a sense of community. It helps you to see that it is possible to get through this. It helps you to know that things can get better.

Given that cancer is the thread that holds us together, we know inevitably that for some of us things do not get better. We lose members of our community weekly and that takes a toll on our mental health. It seems that these bright lights of potential and sparkle get put out in the blink of an eye. In the past, these losses would pass quietly with most of the world moving on to the next big piece of news. The cancer community on social media has completely changed how we honor the legacy of a friend murdered by cancer. We don’t stop talking about them. We keep their spirit with us. Above all else, we keep fighting for change in their honor. I find it quite beautiful that the pure love that radiates from the cancer community may truly be what ends up saving us. And saving me.