Michael Abrey

I am 20 years old and live in Brandon, Manitoba. When I was 18 years old I started to have these weird symptoms: a very sore neck, I was dragging my leg, I had headaches, I walked like I was drunk, it was hard to write, and I couldn’t even draw a circle. I thought I was having a stroke. It took going to the Emergency Department three times before they figured out that I had a brain tumour. That was really hard, as I felt invalidated and that I was going crazy. It turned out to be a medulloblastoma, which is a very rare kind of brain cancer.

It was so shocking at first, and so scary. But in some ways, it was a relief, because I was so worried that I would permanently have all those weird symptoms forever and never be able to think properly again or walk properly. When we knew what it was, we could get on with treating it.

I was 18 years old when I was diagnosed with a rare form of brain cancer.

Before they started the radiation and chemo, they talked to me about a referral to the fertility clinic and banking and freezing my sperm. It was a pretty awkward and strange conversation to be having as an 18 year old.

I went ahead and got my sperm stored  but it turned out it was another financial stress for me.

There was cost for the initial storing, the testing and now continuing to store it for $300 a year. I am hoping to get a fertility test soon to see if I need to keep paying for storage. Just not what I was thinking about at 18 or even now at 20 and the cost with all the other financial stress is a burden for sure. It feels unfair that at 18 I was forced to think of a future where I may not be allowed to have children because I am no longer fertile or because I didn’t pay for the preventative measures needed.

I don’t know if I have ever really dealt with my prognosis.

I don’t really know what it is, as they don’t know so much about medulloblastoma in adults, and they just say they don’t know. But once you’ve been vulnerable, you always feel vulnerable.

Losing my hair was demoralizing.

Even before I lost it, I was so afraid to lose it. It happened three weeks into radiation. At one point I thought maybe I will be lucky and I won’t lose it, but I did, first a little, then a little more and then it just came out in clumps. My appearance changed so much – no hair and I went from 150 to 180 pounds because of the Dex. I felt like I lost my identity.

For about a month or a month and a half I walked around with my head down.

I felt so ashamed, and so unlovable. I felt so ugly. My girlfriend and my grandpa– they didn’t care about my looks. They saw me as the same person– but I didn’t feel like me.  My hair is back now, and I am almost at my normal weight, but I have lost so much strength in the time I was first diagnosed till now, it feels like I'm a completely different person from pre-cancer me.

Most of my friends haven’t been able to relate.

They don’t know what to say or how to be, or they don’t want to believe it. They just kind of “brush it off”. They’re great if I need distraction or basically to have someone to play with, but they just don’t get it. The people who do get it are the ones I met through Young Adult Cancer Canada (YACC) and the “Retreat Yourself” I went to in 2019, and if you can, go to one. It’s one of the highlights of my life.

I didn’t have a great childhood.

I didn’t grow up with loving parents. It became too toxic so I moved in with my grandparents when I was 15. When I was diagnosed, I thought this would change our relationship for the better, but it didn’t. My grandpa on the other hand truly stepped up to help in whatever way he could. He doesn’t understand everything I am going through, but I know he is in my corner and I feel unconditionally loved by him.

When I was diagnosed and through my treatment, my girlfriend was my main support.

My girlfriend and I broke up a couple of months ago.  That’s been hard, but I am OK. She was an amazing support to me through this. There was a time I felt so ugly and unlovable – especially when I had lost my hair and put on weight with the steroids (part of my treatment). I needed constant affection and reassurance, and she was always there to support and encourage me when I needed that reassurance and confidence boost.

I don’t really think about death and dying.

At least not every day. If it happens, it happens. Right now I am just focused on my goals – and what I can do while I am alive and that’s what pushes me forward. Perseverance. Especially my goal of helping others. When I felt I couldn’t do anything physical, I felt lost, but now I know where I want to put my energy. I know I want to help others.

The anxiety is like an itch that never really goes away.

It’s hard to brush it off, especially if I get a sore neck or a bit of a headache it brings everything back to when I was first diagnosed. It really kicks in for me about two weeks before my MRI. I have them every 3 months. Once I get the news that there is no sign of the tumour, I can relax a bit, but then it slowly kicks in again and is in full gear once again about two weeks before the next MRI.

We are trained to be thinking of the future all the time

, especially at my age. But so much can change, and the future can be so unexpected. It’s hard to make any plans when everything is so uncertain. I just take it a day at a time now. I know things can change or they can stay the same. I am just living in the present. 

I have always been very independent.

I left home at 17, got a job and an apartment with a roommate, and then got diagnosed with brain cancer when I was 18. I have been one of the lucky ones as I can’t say enough about my employer. They have been so great, and like a loving family to me. I was able to go on disability through them and I don’t know what I would have done if I didn’t have their support and help. They continue to help me with returning to work.

I was very strong physically, but that has all changed.

When it all happened, I had just been accepted into school to become a mechanic. At the time, I was very strong physically, but that has all changed. I know I could never do that kind of physical work now. I got kind of depressed wondering what kind of work I could do. Recently I have figured out that I would like to be a social worker as I found they were so helpful to me through this and that inspired me.  I felt so useless during my treatments as I had no clue what I would do for a career, but now that I have made this decision, I feel like my life has meaning and is purposeful again and I feel like I am on the right path.

Finances have been a big problem for me.

There was a time when I was waiting for my disability to come through that I just didn’t have any money to pay rent or for food. My roommate and childhood friend had moved out unexpectedly, and my disability insurance was reluctant to give me long term disability. Luckily, my grandpa helped me out otherwise I don’t know what I would have done.  

I had to move in with my grandpa in the summer of 2019.

Moving back home with my grandpa was very tough mentally as I am very independent and have always worked and looked after myself. I became emotionally numb the four months when I was home. I could no longer see my girlfriend every day because my grandpa lives in a different town. She was my main support and helped me so much mentally and that was really hard not being able to be with her every day.  I felt so lost and useless.