“Who Are You?”
I’m a student, a son, a friend, a future nurse, and a cancer survivor. Because I was diagnosed at such a young age, life with this illness is all I’ve known. For 16 years of my childhood, that’s who I was: a cancer patient. Now that I’m an adult, I’m trying to rediscover and reestablish myself.
I was first diagnosed with a brain tumour in June of 2002, when I was two and a half years old. My brain tumour, called Anaplastic Ependymoma, was meshed with my brainstem. To treat it, I underwent multiple surgeries, chemo, and radiation. When I was five and a half, my tumour recurred. I repeated surgery and chemo and then I felt okay for a few years but then when I was nine, the tumour came back a third time. Again, I underwent more surgery, more radiation, and at twenty years old I’m still here today, cancer-free!
My battle didn’t come without its scars. I became deaf in one ear when I was five, and I developed hypothyroidism due to all the radiation I received. Similar to other childhood cancer survivors, I have multiple long-term effects of my illness and its treatment. I consider myself fortunate however, as these conditions are now stable and I am living a minimally-impacted, overall healthy life. I do feel that in order to connect with people outside of the survivor community, that I sometimes have to shy away from or hide this entire part of my life.
My experience as a child with cancer was as good as it could’ve been. One necessity that came out of it was that I was homeschooled. This made hospital visits, treatments, and my volunteer work easier to schedule. I got involved with many different organizations while I was on treatment, and even afterwards. I spoke countless times about my story to many people, in order to spread awareness. I have always been very open about my experience with cancer. Because of this, I gained a lot of good friends through my volunteerism.
“My battle didn’t come without its scars.”
I found camp to be my favourite part of cancer (if I can say that). I made many great friends there as well, and it was a place for me to connect with and create a network with other children with cancer. I was able to be a kid and have fun, as well as learn so many life skills. I cannot say enough about camp and the children’s hospital in Toronto. I can’t say much about other children’s hospitals across the country, but mine did and still does a great job of supporting patients and families through treatment.
“I do feel that in order to connect with people outside of the survivor community, that I sometimes have to shy away from or hide this entire part of my life.”
Having said that, when I turned 18 and graduated out of pediatric care, I got a shock. I became responsible for scheduling and keeping track of my appointments and health records. At around the same time, I also moved halfway across the country (from Toronto to Calgary) for university. The adjustment has been challenging, to say the least. I was and still am close with my parents and sister. However, I’m not a super-outgoing person, and that has made it difficult to make good friends in Calgary. Because of my circumstances, I was always well supported and felt that I had a lot of people to connect with and talk to about my experiences. I don’t have as good a support network over here and I’ve really had to learn how to live as my own person.
As an adult survivor of childhood cancer living in a new city, I’ve especially noticed the lack of supports and networks for people like me. I don’t know of any national organizations that provide support specifically for our community of survivors once we turn 18. That’s where I think CCSC is an awesome initiative to create connections, and to provide support for the thousands of Canadian childhood cancer survivors through transitions and other aspects of adult life. I’m looking forward to making more meaningful connections within my survivorship community.
“I think keeping a positive outlook on life, learning from successes and failures alike, and remembering to be thankful is so important in survivorship.”
I’m extremely grateful for all the experiences that I had as a kid. Even cancer, as awful as it was, shaped me to be who I am today. I’m grateful for who I am and what I am ABLE to do, I don’t focus on what could’ve been. I think keeping a positive outlook on life, learning from successes and failures alike, and remembering to be thankful is so important in survivorship. It’s helped to get me where I am today.
Tobin
Calgary, Alberta
