We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from cancer survivor Mark Nelson.
My family and I have always enjoyed the beach, and our goal this past summer was to spend time on one, soaking up the sun and swimming in the ocean. I had a little challenge, though: I’m a one-year colon cancer survivor with a permanent colostomy and a small hernia alongside my stomach. My stomach bulge is bigger than the average person’s, and that’s something that can’t be hidden on a beach.
It was easy to think when planning our vacation that I would have no problem with taking my shirt off and enjoying the sun like everyone else. But I found that as soon as I removed my shirt, people on the beach stared at me and the black tube top I wear to try to conceal my bag and stoma. I was very uncomfortable and felt like a freak.
I’m a cancer survivor. I’ve been through so much. Even so, I wasn’t prepared to feel that way that day. I wish somehow I had been more prepared.
In fact, I wish I had been better prepared for much of my cancer journey.
I was diagnosed with colon cancer in March 2011. We were never actually told by a doctor I had cancer, though: We found out when we received a phone call from the surgeon’s secretary to schedule an appointment with him. She introduced herself as being with the colon cancer department, and when we heard that we knew this was a far graver issue than anyone had told us.
We went to visit our surgeon. He did a finger rectal exam, and it took him ten seconds to tell me I needed surgery and was going to end up with a stoma and a permanent bag. He kept saying that I was young and that everything would be okay. Well, having a bag and a permanent stoma did not feel okay to me. My life was about to be changed permanently, and I barely had time to process it all.
I had my surgery three months later. After surgery, I had a bag on and a catheter, and I came across a nurse who made an insensitive comment about my stoma. She and many of the other doctors and nurses I came across educated me fairly well about my disease and what was happening to me, but they were often blunt and to-the-point when they spoke with us. I questioned whether they had any concern about my mental well-being, and I wished for someone to ask my wife and I how we were handling all the new information and to give me an opportunity to talk about how I felt.
I was concerned that this disease and its aftermath would be changing not only my life but also my families’ lives. I felt out of sorts, confused, not in control – kind of the way I felt at the beach.
I wound up doing four months of chemotherapy after eight weeks of recovering from surgery. Nobody warned me I would feel like I was on my death bed while undergoing chemo, but I did. I had nine treatments, I lost 45 pounds, and my wife and I didn’t know if I was going to make it. We were both scared: Scared that I might not get through this, scared that my cancer might come back after the treatments, and scared about what our life might be like.
We knew we had to fight to get myself back on track, so we set a goal of traveling to see our kids and to go to the ocean. When we heard I was cancer-free one year out from surgery and chemo, we booked our trip.
And back to the beach: Just as I felt unprepared and not totally supported during my diagnosis and treatment, I hadn’t been prepared for feeling so self-conscious with my shirt off in public. But standing in the sand that summer day, I knew I had to be strong enough to get through it – just as I got through the cancer. And so, I went from thinking that everyone was looking at me and feeling sorry for me or wondering why the heck I had that stomach bulge and was wearing that weird sleeve to accepting that I’m a colon cancer survivor. And feeling proud of it.
Mark Nelson and his wife live in a small rural town in Northwestern Wisconsin. Mark is a high-school math teacher as well as an entrepreneur. More on Mark’s colon cancer journey can be found on his blog.