I started having chest pain and other symptoms at the end of summer in 1989 when I was 15, but because I was pretty much full grown my doctor shrugged it off as growing pains. For the next seven months I got worse and was misdiagnosed with different things. Towards the end, my mom took me to the emergency every week but they could find nothing wrong with me. Finally after not being able to stand one Sunday morning my mom wouldn’t take no for an answer and they took my first chest x-ray. It was black; full of cancer; Hodgkin’s Lymphoma stage four and the hospital said there was nothing they could do and gave me three months to live in March 1990. Three months later in February just after my 17th birthday I noticed some symptoms again. I already knew my cancer had come back. I was administered a more aggressive chemo…Seven weeks later on July 4th 1991 I was discharged and I could go home and start living a normal life, yaaaay! Um, ya right.
One week later I was back in the hospital with an infection for a week. Then shortly after that I got really bad shingles. Not long after that I started getting really bad pain in my abdomen and was given pain meds. My spleen was removed. That ended my pursuit of graduating from high school like a normal kid and soon the novelty of my illness wore out for everyone and I was left to start my lonely and isolated, frustrating, misunderstood life as a childhood cancer survivor.
I attempted to get involved with the programs for kids with cancer through the Cancer Society or Children’s Hospital: I don’t remember, but I wasn’t allowed to talk about my experience and I felt very left out. I guess that was just a part of being a kid in that circumstance but I stopped being involved with the Cancer Society because I had figured out already that it was just all about raising money and treating cancer and they only wanted to hear positive stories about what they did.
The first noticeable side effect was an unexplainable brain fatigue and it wasn’t oh I’m tired why don’t you go and rest maybe you’ll feel better kind, but rather from all the poison that was put into me. It was painful but it affected my ability to sleep properly. It also changed or affected me emotional and mentally. I spent the first year pretty much in bed even though my ability to sleep was all messed up at the same time. I figured out real quick that no one understood, but then how could they? So I just tried to live as normal as possible and fit in with what I was expected to do as an adult. I would last a few months and then crash and I repeated this over and over again. I have never been able to work for more than a few months at a time without having to take a very long break. My GP had been very frustrated with me: The last time I was in the hospital I was told that I had to stop doing this. Doing what? I wondered. It wasn’t even a few months and my dr. put me on OxyContin because the pain was too much and I was referred to a sleep specialist who made me cocktails of meds to help me sleep. He was the first doctor to acknowledge that my psychiatrist after five years of watching me finally realized that my issues were not psychiatric. He told me I needed to find someone to help me deal with my pain. I had found a job that I really liked and wanted to keep it so I bought extended release morphine on the street and took just enough to keep working. I felt guilty for buying morphine on the street so I stopped. I had to quit my job and once I ran out of money I ended up on the street.
I was put in touch with mental health and assigned a really good social worker who helped me get a bed in a temporary transitional housing complex and arrange for me to go back to the pain clinic. It was the same doctor who had put me on methadone. He told me that they realized that they were over prescribing opiates when he had put me on methadone and that he stopped using them to treat patients. One night I woke up in severe pain and ice cold thinking that I may be having a heart attack. I went to Kelowna to my doctor a few weeks later and told him and he sent me to the hospital to have some tests. I had an emerge doctor to deal with who was irritated because he found nothing wrong with me. I had one more test the following week but was told not to bother coming to it because nothing was wrong with me. I seriously considered not going to it but my mom drove me back to Kelowna the next week. Within five minutes of the test I was admitted to the cardiac ward where they found that the major artery going down the center of my heart was 99% blocked and stuck a stint in. I am not sure if I’m hoping they can still be able to stabilize things to the point where I might be able to work part time and have a home but ya my health is pretty volatile so, ya…