A woman I know has grown frustrated that her husband hasn’t returned to full health since he completed his brutal treatment regime for nasal cancer. His port came out two months ago, so according to her, he should have recovered by now. What she doesn’t realize is that cancer treatment casts a very long shadow.
Most people know that surgery, chemotherapy, and radiation are dreadful to endure, but many do not appreciate how profoundly changed our bodies are at the end of the process.
Many of us leave the cancer center with missing parts, altered functions, and angry scars that may never heal. And though our cancer souvenirs may not be visiblewe tend to keep them well hidden under clothes and behind doorsthey can affect us for years after treatment is done.
This comes as an especially big shock to young survivors. We thought we were in great shape when a random lump, blood test, or x-ray suddenly revealed otherwise. I was enjoying an easy pregnancy when I got diagnosed. One survivor I spoke to had just mastered ice climbing and another played competitive hockey when they learned they had the disease.
Suddenly we go from being at the peak of our physical ability to having serious physical limitations. We know we are lucky to be alive, but living in these new bodies isn’t always easy.
Elan was a 27-year old jock who thought his sciatic nerve was acting up. The pain became so bad he finally had an MRI. Only then did he realize he had a malignant tumor the size of a football lodged between his sacrum and hip bone. During a 15-hour surgery, doctors removed the tumor, but they also took out a significant amount of pelvic bone and musculature.
Elan’s recovery began in a wheelchair. When I met him a year later, he had progressed to a cane. A few years later, he dropped the cane, but walked with a limp.
“I was a 27-year-old guy who loved sports and loved being active. I associated that with my personality. It was a relief to be able to walk again, but I miss all the other stuff I did. There are a lot of sports I can’t do now. Some I have to do lightly, because I can’t put myself out there in an aggressive way. It has been difficult to let go of that part of myself.”
Even some of us who didn’t have major surgeries find ourselves impaired in surprising ways. One young mother I spoke to discovered that the chemo she had taken for ovarian cancer left her with neuropathy in her feet. For months she felt so unstable she couldn’t carry her baby. Several musicians I know have been rendered similarly shaky at their instruments.
Limps and unstable hands and feet can broadcast the fact that we have health problems. Yet enduring private side effects brings its own burden: people think you have left cancer behind when in fact you still have to deal with its fallout.
If you met Michelle, you would be struck by how energetic and accomplished she is. From the outside, it appears this successful businesswoman has put cervical cancer behind her, but the truth is that the radiation she had to cure cervical cancer left her with colitis.
“All of the sudden, it comes over me and I feel an uncontrollable sense that I have to go the bathroom that second. I end up leaving panties in trash cans all over the place. Once it happened on an airplane in First Class. It was during landing and I couldn’t get up. I was sitting next to a very distinguished businessman, and I just wanted to crawl into a hole and die. I try to make light of these things and remind myself I am alive. But this will define my life. These physical aspects have changed how I see myself.”
And that is one of the hardest parts of dealing with ongoing side effects: they remind us that we have been permanently altered.
Jeff, another jock in his twenties, had his colon removed after he got diagnosed with colon cancer. He now has to go the bathroom about 10 times a day. An avid rugby player, he has to take Imodium before he hits the field so he doesn’t have to go to the bathroom in the middle of a match. He has adjusted to these new routines, but he says, “Every single day, 10 times a day, I am reminded of cancer.”
When we are sitting in the oncologist’s office, learning about our treatment plans and wondering if we will live or die, we don’t focus on the aftermath of the cure. We just want to live. And when we finish the toxic regimes and the hair grows back, our loved ones want to believe we are as good as new.
That isn’t possible for all of us. We may never be able to play football, go jogging, or play the piano like we used to. We know it is great to be alive, but we also struggle with losing physical abilities we expected to maintain for decades to come. Maybe if our friends and family knew that, they would be a little more patient with us when we chafe in our new skin. And maybe we would be more patient with ourselves.
Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it's like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.