On Being a Forgotten Mourner: the Sibling of a Cancer Patient

When I was mid-way through my final year of high school, my brother was diagnosed with non-Hodgkin’s lymphoma.

If I shut my eyes, I can still picture the doctors coming in to tell us the news. I was in my school uniform, bored and scrolling through my phone waiting for my brother to get his test results back. They’d been saying for weeks that he had a virus of some kind. They couldn’t tell if it was a foreign virus he’d picked up travelling, a bacterial virus picked up from one of his friend’s stupid drinking dares or some random bug entirely.

Regardless, at that point I was over being dragged along to appointments and just wanted them to tell us what he had so that they could give him the right meds and we could get out of there already.

When they broke the news that he had cancer, I thought I was going to throw up. Instead, I nearly fainted. I just couldn’t believe something like this was happening to our family. This kind of thing just couldn’t happen to us. I mean, who gets cancer when they’re 20 years old?

However, it did happen and I had to suck up all my problems and deal with it. I didn’t want to make any distractions to take away from his treatment. So overnight I shut myself down. I didn’t let any of my friends talk about it with me at school. I emailed my teachers to tell them not to pull me aside to talk to me about what was happening at home. I completed my school exams two weeks later without any special privileges. I didn’t have cancer so I wouldn’t allow myself any special treatment. I convinced myself I was fine.

Really, I was drowning. I spent my days at school and my nights at the hospital. I would get picked up by a different one of my parent’s friends from school each day and driven to the hospital, because my parents were already there. I isolated myself from my friends and only allowed myself to cry once when I was sure no one else was home.

My stomach was constantly in knots, like I was living on a ship in the middle of a storm, unable to get rid of that queasy feeling inside of me. I carried around this burden pretending everything was okay because I knew I couldn’t crumble and take any care away from my brother. I needed him to get better.

I remember being shown a games room in the hospital by a nurse that I could use to study, and how she told me I was “lucky” because I had the whole room to myself, as there were no other young adults on the hematology ward to use it. Lucky? I remember thinking to myself. Is she serious?

Siblings of cancer patients are often called “forgotten mourners” because of the status of being equal to the patient (in comparison to a parental status). It is easy for them to slip into the cracks and suppress their own emotions and as not to detract from their sick siblings. Which is exactly what I did.

As a result of this, it has been found that 57 per cent of young people aged 12 to 24 years old who are siblings of a cancer patient have very high levels of psychological distress. Studies also show that suffering from psychological morbidity and developing other psychosocial problems is also a common occurrence for these siblings. Basically, siblings suppress the trauma they themselves are experiencing in order to put on a brave face for their brother or sister. It’s like living in a constant state of anxiety where you’re praying for an end to their suffering so these feelings can go away and you can finally breathe again.

But even if this miracle day does arrive, these feelings don’t go away. I am one of the lucky ones, as my brother entered into remission a year after his treatment. To this day, it’s still the best Christmas gift I’ve ever received. No more living at the hospital, no more chemo treatments, no more hospital food, no more sleepless nights.

The thing that doesn’t end is the worry. I still worry that I’m going to wake up to him screaming in pain. I still worry whenever he has a cold that maybe it’s something more. I still worry whenever he goes in for a checkup that they’re going to find its come back. I still worry about everything. After living through what he went through, I don’t think that will ever go away.

I still don’t like to talk about that time in my life. Whenever I’m in a situation where the topic does surface, it’s like a cloud of suffocation takes over me and I immediately need to find a way to exit the conversation. I crack jokes, I make puns, I ‘suddenly’ remember a great story I forgot to tell them. I bring the lightheartedness back to the conversation and shut it down. Most people don’t notice what I’m doing and respond with, “You’re so funny; you never get deep about anything!” Which is fine most of the time. But other times it makes me sound dumb, even shallow, as people assume I’m not smart to understand what they’re talking about.

I do understand. I lived through it. I just don’t want to re-live it. Every time I shut my eyes at night is more than enough.

Cover by Daan Stevens