North Carolina native Ken Johnson knows what hard work looks like. He grew up on a dairy farm milking more than 50 cows multiple times a day, joined the Army right out of high school and has been fighting multiple myeloma for the past 20 years. We recently sat down with Johnson to talk about how he made a connection with UNC Lineberger, his involvement with the Patient and Family Advisory Council and why he feels volunteering is something everyone should do.
What connected you to UNC Lineberger?
I was diagnosed with multiple myeloma in 1998 and in 1999 I started coming for treatments at the old Gravely building before the N.C. Cancer Hospital was built. Here we are now, 2018. Diagnosed 20 years ago, I’ve been being seen and getting help from a lot of good people and I have nothing but the best things to say about this cancer center. I heard a gentleman at the Patient Family Advisory Council say one day, he said ‘I’ve only got cancer one day a month – when I come here for treatments.’ I feel the same way. When I’m at home, cancer doesn’t enter my mind. It really doesn’t. I come down here and it’s like coming home to a family reunion. I know all of these people. I like them all and they seem to like me. If you walk through the infusion floor and the second floor, my wife and I talk a lot to people because we know them all. After 10 to 15 years you get to know people well.
How did you get involved in the Patient and Family Advisory Council?
In 2012, Loretta Muss (the N.C. Cancer Hospital Patient and Family Advisory Council coordinator) approached me on the recommendation of my urologist, Dr. Matthew Nielsen. She asked me if I would like to and I told her I would love to. She had three people interview me and I said ‘let me tell you people right out front before we start that I do not have that filter between the brain and the mouth. I don’t have that. If I think it, I say it, I can’t help it. It falls in my head it falls out my mouth.’ And Loretta said, ‘That’s exactly what we are looking for.’ The time that I have been involved with the Patient and Family Advisory Council is one of the most rewarding things I’ve ever done.
What does your work involve with the Patient and Family Advisory Council?
My first job was to go up to the infusion floor and talk to patients. Oh boy, I loved that. I’m a talker. I could just walk up to people and start talking with them, and we bonded pretty quickly. It was really rewarding to me and to my heart to be able to bond with these patients because I knew what they were going through. I had been there, done that. I’ve helped in other ways too, but that was my favorite.
What has been your favorite moment from that experience?
When I was rounding one day I met a young man and his wife. Two weeks after their wedding he was diagnosed with cancer. He was here for treatment and I told him that I was coming the next day for my treatment. My wife and I came down the next day and were walking through the infusion floor and I said, ‘Wait! I want to introduce you to this couple.’ I introduced her to them, but I got emotional and had to excuse myself, so my wife talked to them for a while. You don’t want the patients in infusion to see you weeping. I didn’t use to be an emotional person but since I started my journey with cancer I’m very emotional.
Why did you want to be involved with the Patient Family Advisory Council?
I saw it as a way to give back. I didn’t have a lot of ways to give back, but I saw this as my way that I could give back to all of the people who had done so much for me. They saved my life and have given me more years of life that I didn’t think I would have. In 1998, when I was diagnosed, the average lifespan was 18 months and I’ve been here 20 years now. Giving back in this way made me feel good.
What’s your advice if someone was thinking of volunteering with the Patient and Family Advisory Council?
Explore the Patient and Family Advisory Council as deeply as you can. I get way more out of it than I give. I think it would be good for anybody who has the time to volunteer here.