I was diagnosed with NF1 in 1962 when I was six. Prior to that, I had yearly visits to the cancer clinic at University Hospital in Saskatoon. My mom and the doctors were concerned about the tumour growing on the left side of my nose. Mom suspected that the forceps used in my delivery were the reason for the tumour. Mom was very protective of me, afraid of me injuring my self and having more tumours starting. I was ten before I could ride a bike without training wheels.

August of the summer when I was six brought the annual trip into Saskatoon visit to the cancer clinic, and the back to school shopping for the first time. The summer trips to the city always meant a night in a hotel, usually the Senator, and a movie with popcorn.

This time, I was Dr. Brown, who actually diagnosed me. He referred me to a plastic surgeon. He decided to wait a year before performing the surgery to remove the tumour.

I started my first year of school in the village of Birsay, along with about twelve other students, who I did not know as I grew up on a farm and had not met them in the circle of my mom’s friends. I was teased because I looked different. I was devastated when my first school picture did not turn out. Even as a child I suspected the photography company did not print the pictures because of that tumour.

I eagerly anticipated the arrival of the summer holidays, not for the release from school, but the hope that when I went back in September, I would look normal. The surgery did improve my appearance, but the tumour gradually came back.

My next surgery was the Christmas of grade ten. That was a long and invasive procedure. The plastic surgeon cut my upper lip in the middle then proceeded to cut along the side of my nose up to the corner of my eye. He pulled the skin back and the removal began. They surgical team had to scrap the plexi-form tumour from the spongy tissue of my cheek bone. I was put back together and sent to the recovery room about five hours later. When I woke up the next morning, my face was bandaged and swollen, my eyes were black, and I had a drainage tube up my nose. A few days later, the drainage tube and bandage was removed. My face was still badly bruised and swollen. The healing process took several months.

I had several minor surgeries to lift the left side of my lip, every time it was fixed, it would let go in a few years. Finally after moving to BC, I met a new plastic surgeon who used a piece of tendon from my left arm instead of wire. There is still a piece of wire anchored to one of my upper teeth. It took a few minutes to explain that to my dentist when he took ex-rays.

Years later, after mom and her sister had both passed away, I was given some letters mom had written my aunt. She told my aunt that I had just been diagnosed with NF, and that that is what their dad had died from. Prior to that all I had been told was that Grandpa died of a brain tumour at the Mayo Clinic in Rochester in 1939, and that they had kept his brain. So, now I assume that my mom had a very mild case of NF 1, she did have a few pale café-au-lait spots, but I never gave it much thought.

Aside from the tumour surgeries, most of the manifestations of NF do not interfere with my day to day life except for the fatigue. I have several small tumours, liche nodules in my right eye, high blood pressure, scoliosis, and several lumps and bumps on my midriff.

I chose not to have children because of the NF. I was able to have a tubal ligation in my mid-twenties because of the genetic reason. I currently live in B.C. with the love of my life and our four cats. I am looking forward to retirement in just over three years in anticipation of getting away from the rat race of the greater Vancouver area.