On September 10th, 2012, I was diagnosed with Ewing’s Sarcoma.
After 4 months of tests, invasive procedures and examinations, the doctors at the UHN had finally determined that the bump on my head was a cancerous tumour. Extra-skeletal (scalp) Ewing’s Sarcoma. The odds of getting my form of cancer were 0.01% of 2.3% of 10%. Like winning the lottery.
My reaction to the news was a quick rush of anxiety, and then a strange sense of calm: I was invited by my doctor to cuss and push tables and be frustrated, but I’m a mellow guy, and a cancer diagnosis couldn’t change that.
The reaction of my friends and family still make me feel supported to this day. Here are some:
- The night of the diagnosis, my brother Jonathan bought a cheesecake and declared the night as a family cheesecake night
- My family sat around the kitchen table cracking jokes while a few friends who came to join us after I shared the news looked at us with UTMOST confusion regarding our laughter.
- Two of my friends created a ten-minute video, sharing messages of love and support from my entire grade.
People amaze me.
Everyone has their own coping mechanisms
The first half of my treatment was surprisingly smooth! Having decided to actually go through with my Grade 12 school year (I had the option to defer, but wanted to try and graduate with my class), I worked through my double curriculum and maintained my grades. Relatives delivered meals to our house to take some of the burden off my family, Visitors came in and out at the hospital. All of the non-cancer related anxieties I had went away, and I was in a dream-like state that gave me the strongest sense of peace I have ever felt.
However, around the middle of my 198 day treatment plan, things started changing. The side-effects of my treatment began to leave me feeling reclusive, in addition to brutal mouth sores, fatigue, and extreme sensitivity to temperature and smells. I was at 40 out of 91 cycles on the Chemo count, and my life was becoming a bit of a blur.
And those are just the physical symptoms.
Cancer is more than just physical
Cancer care should ABSOLUTELY deal with the physical treatment of cancer. But why stop there?
The second half of treatment took a great toll on my mental and emotional state. It was super frustrating to not be able to climb 12 stairs without needing a break. Or to sit at home and have just enough attention span to listen to music, covered in four blankets in 20°C weather. Or to not be able to keep up with my friends. I wasn’t even able to indulge my passion for drumming for more than 30 seconds at a time. My friends and family were struggling to find ways to cope with watching me go through all of this.
At times, it was harder for them than it was for me.
I can only imagine what it was like for them to watch me lose my hair and skin tone, go through multiple surgeries, and sleep constantly. I wasn’t the only one that needed support.
On my last round of chemotherapy, I met Carley and her family. My family and I had the privilege of spending 5 days with her and the rest of the Allisons, and it was beyond inspiring to be with them. The Allisons’ kindness and positive attitude still resonate strongly with me to this day.
By the end of treatment, March 26, 2013, I began the process of moving on.
- Moving from my grade 12 year of hospital beds to my grade 12 year of prom and final assignments
- Moving on from cancer treatment to family wish trips
- Moving on from one kind of routine to another
Although the physical effects of my cancer journey started and ended as it was supposed to, I can’t help but feel that there was a gap during my 7-month stay at Sick Kids. Through absolutely no fault of my amazing team of nurses, oncologists, and physicians, I experienced a systemic gap in what was offered to me as a patient. While my physical health and day-to-day physical well-being was monitored and well cared for, my emotional and mental health did not receive the same level of care.
As someone who has experienced cancer hands-on, I can say that the Psychosocial Oncology Fellowship program at Sick Kids is something that I fully support. Having a program that facilitates connection based on shared experience will make the process less lonely for both patients and their families, and help combat the idea that cancer treatment has to be an isolated process.
By: Michael Friedman