What it’s like to have lived through rectal cancer
Six people share their diverse experiences and emotions along with photos that illustrate their cancer journeys.
“Over the 18 months since the surgery, I’ve been getting steadily better. So the body does heal. It just takes longer than a person would think.” –Scott Traviglia, a pseudonym*
Between September 2020 and February 2021, 20 people who’d had rectal cancer picked up the phone or joined a Zoom call and talked about their feelings. Some spoke of their immense sadness during diagnosis and treatment, others of their lingering anxiety and fear of their cancer coming back. A few felt lucky to be alive. A few wondered if death would have been better.
These nuanced reflections were continuing a conversation started a few months earlier, when the patients submitted photos that illustrated important aspects of their rectal cancer journey. It was the first time researchers had used a method called photo-elicitation, in which photos chosen by the participants are used as a stimulus and guide to examine the psychological impact of rectal cancer and the coping strategies patients employ.
“As many as half of United States cancer survivors report that their physicians never discuss their social and emotional needs after cancer therapy, even though we know that distress is highly prevalent among cancer survivors and that patients with rectal cancer specifically are likely to report unmet emotional needs after treatment,” said Pasithorn A. Suwanabol, M.D., M.S., an assistant professor at the University of Michigan Medical School, a colorectal surgeon at the Ann Arbor Veterans Affairs Healthcare System and the senior author of the study. “As part of a program that is nationally accredited for rectal cancer care, we felt compelled to start exploring those narratives.”
Below is a selection of these images as well as quotes from the interviews that followed to give a glimpse into what it’s like to be on the other side of rectal cancer.
“The crayons represent the color. The red represents the blood that I saw for so long and the blood that I still look for. I still, every day, look at that paper to make sure there's no red on it.” - Phyllis Pellerito
“They brought this old Airdyne stationary bike down. Of course, I’m in the hospital, so I only have a gown – no bike shorts or anything – but I don’t care. I put some towels under my seat, and off I went. I was always on that bike pedaling. So, when the second surgery happened, without me even saying anything, the doctor had ordered this bike already put in my room. It made my day.” - Beth Carver
“What that signifies is that I have to get up in the middle of the night and use the restroom. It’s rare that I get an eight-hour stretch of sleep. I’ve traveled so much in my life that it’s really no problem for me because I can get up, use the restroom, come back and fall asleep in five minutes. I’ve made so many trips, I was used to falling asleep on airplanes. Over the 18 months since the surgery, it’s been getting steadily better. So the body does heal. It just takes longer than a person would think.” - Scott Traviglia
“Initially, you buy this [medication] from Costco or Sam’s Club. And it’s very, very inexpensive. It was something like 440 pills for $5.50. And it was available everywhere. Well, probably a couple years ago or so, the Food and Drug Administration outlawed the sale of Imodium over the counter. It has to be a prescription now. You get much less for much more money.” - Ben Jackson
“People sent me care packages. Many came around and dropped off food. For nine months, I didn’t go to the grocery store, and I didn’t cook, but I had had food every day. People just helped out. It’s amazing what support, emotional support, does.” - Diana Prince
“Rectal cancer has flipped my life upside down. We were people on the move all the time. We lived by the water. We owned property up north. We did a lot of outdoor activities. We were very active in our lifestyle. Today we stick close to home. It’s been life-changing.” - Ida Smith
“There are days I can leave the home without this bag. I don't need it as much as I used to, but I still keep it with me. I can't even begin to tell you how much things have improved. It’s never like what it was before all this happened. It's so much better. If there's one thing that I can tell anybody, it’s that it will improve, it will.” —Pellerito
*Pseudonyms have been used for all participants.
Paper cited/DOI: “It’s not fine: A photo-elicitation study of rectal cancer survivors’ emotions and coping strategies,” Surgery. DOI: 10.1016/j.surg.2021.10.067