My name is Simon and I’m 36 years old. I live in Quebec, Canada. I’m an aerospace engineer and a proud dad of 3 little girls. They are 1, 4 and 6 years old.
How were you diagnosed and how long did it take? What form of NETs were you diagnosed with? And had the NET spread to other parts of your body?
For several years before my diagnosis, I saw many doctors for sporadic gastrointestinal issues, such as pains, vomiting, and fatigue. Most doctors were assuming that stress was the root cause of my condition. Others thought I had simply caught gastroenteritis from my kid’s daycare. I even remember a gastroenterologist suggesting I eat more fibers and yogurt, and I should be fine.
However, two weeks before Christmas 2017, my stomach pain was so intense that I decided to go to the Emergency Room at the closest hospital to my home. After finding a mass they thought to be an abdominal cyst, they decided to operate on me. It turned out to be a major surgery in which I had many complications. That was my first Christmas being a dad of two little girls. I was discharged on January 1, 2018, as if a new era of my life was starting. It was only after three weeks of waiting (thanks to the Christmas backlog), that the pathology report came out with the proper diagnosis: a pancreatic neuroendocrine tumor.
What treatment have you had and how did it affect you then and now?
When I am hospitalized, I have a very thick binder with my medical record following me. I can see in the stretcher-bearers’ eyes that the binder is uncommonly big. Every time I fill a medical form I can’t list all surgeries in the space allowed.
I remember describing all surgeries to a nurse once. At one point, she stopped me and asked me, looking straight into my eyes, “do you have kids?” I answered yes. Then, she added: “it’s crazy what we can endure as an ordeal when we have kids’’. I guess I have three good reasons to stay alive.
What impact has the diagnosis had on your personal life?
Because of my young age, on the exact same morning that I was told by my oncologist to start the CAPTEM chemotherapy, I left one hospital to go to the fertility clinic in another hospital, to ask for an on-the-spot appointment. Happily, the team at the fertility clinic was very supportive of the process and they did their best to not delay too much my chemotherapy treatment. Both hospitals are located only 750 meters one from each other on the same street. I felt like it was a battle between life and death, and both were close to each other.
As an adult in my early 30’s, I was at the stage of my life to establish my career and my family. I believe this is already challenging enough by itself. I feel that everything is a whole new ballgame by adding the disease, the treatments, and the uncertainty.
Who’s been your hero? Perhaps it was you!
Unquestionably, my wife. With all the overwhelming feelings we go through, she is able to keep the family in a good direction. It’s a pleasure to partner with her for life, for better or for worse as they said. I remember one specific moment when I was at the hospital following major surgery; she had just picked up the kids from the daycare during a heavy snowstorm evening and a few miles away she got stuck on the road because of a flat tire on the mini-van. Indeed, with me at the hospital, she was already emotionally overwhelmed. And obviously, the kids were all crying out loud because they were hungry for dinner. As if that wasn’t enough, I had to call her to mention that I was losing so much blood from we don’t know where and I was going to get a blood transfer to keep me alive until they figure out what was going on. I don’t know how she didn’t have a nervous breakdown on that night, or maybe she did and never told me…
To complete this story, I was not even losing blood, it was a nursing error using the PICC line; my hemoglobin was showing low because it was diluted in the IV solutions.
Did you get any help from a patient organization during your journey?
Yes, fortunately, I heard about CNETS-Canada in the few weeks after my diagnostic. Like almost all the newly diagnosed patients, I was completely lost with all the exams and treatments available. CNETS-Canada was holding, coincidently, a patient information day a few weeks after my diagnosis. During these days, doctors are explaining technical information to patients. It was a great start to figure out what will be going on with your body.
Thanks to CNETS-Canada, I also had the chance to meet Daniel. Daniel was about my age and we were sharing about the same academic and professional background. He was fighting the disease for many years and he was able to explain to me quite well how it was to live with this disease. Sadly, Daniel passed away too soon after I met him. He died from complications from treatment. I wish we could have been cancer buddies for decades.
How are you now?
As I’m writing this, my second daughter is turning 4-years-old tomorrow. I hope she will enjoy playing her new game Twister. I hope she will love her day and I hope we will have great family time. I think this I how I am now, I hope for tomorrow, even if I live with a lot of uncertainties.
