Of late I have heard from many of my patients about the inadequacy and almost condescending nature of the term “cancer survivor.” While the National Comprehensive Cancer Network defines a cancer survivor as any individual diagnosed with cancer from the point of diagnosis through the balance of his/her life, the layman’s term of survival carries connotations that are not accurate to those fighting cancer. To survive literally means to exist after a traumatic or life-threatening event. When someone survives a trauma, something is done to this person and they are still alive. The event is assumed to be over. Passivity is implied.
There is nothing passive about the struggle with cancer. Nor is the fight ever completely over. Fighting cancer is, in no uncertain terms, a war. Cancer and its subsequent treatments attack the body, psyche and spirit. As a nurse on the front lines I am in awe of the grit, determination, resiliency, creativity, endurance and sheer will I have seen my patients enact amid this conflict.
Miss A (a patient I have met who will remain anonymous) is a patient with acute lymphoblastic leukemia. Her treatment has caused a baseline of persistent nausea and altered her sense of taste to the point that food is no longer appetizing. Furthermore, Miss A is constantly fatigued. Miss A, however, forces herself to drink an Ensure with each meal to maintain adequate protein intake as her body repairs after each cycle of chemotherapy. She also forces herself to take daily walks to stimulate energy and prevent muscle wasting. These are conscious acts of willpower. This is not passive. The fight is not over.
Miss B has been battling colon cancer with liver metastases for three years. After disease progression, while on her third-line treatment, Miss B took two weeks off treatments and doctor appointments to perform a one-woman show she had been working on for four years. The main premise of this inspiring production was about a woman regaining her life again after years of domesticity nearly broke her spirit. This act of creativity helped Miss A, and others, recall the joys of life and the reason to continue fighting. This is not passive. The fight is not over.
Miss C had Hodgkin’s lymphoma. After years of failed chemotherapy related to toxicity and a subsequent stem cell transplant, Miss C is now cancer free. The years of harsh treatment, however, have left Miss C with chronic pain, peripheral and motor neuropathy, leading to frequent falls and difficulty with fine motor skills. Miss C now works with physical therapists daily to maintain her ability to walk and to relearn how to manipulate objects that she cannot always feel. Furthermore, each routine PET scan leads to paralyzing fear, anxiety and other PTSD-like symptoms. Learning to live with chronic conditions and the stigma of mental health issues are acts of resiliency and determination. This is not passive. And although the cancer may be gone, the fight is not over.
It is understandable that people would want a term to describe their plight with cancer, but care must be taken in the naming of things. Names are potent. Names carry meaning even when not intended. And while anyone unlucky enough to be diagnosed with cancer may look to the term “cancer survivor” as something to strive for, it is far from adequate to describe what this person goes through. Miss A, Miss B and Miss C are far more than simply survivors. We do not call soldiers returning from, or currently fighting, a war “survivor”. We call them warriors. Therefore, I propose changing the term “cancer survivor” to “cancer warrior”.
Finally, it seems more than unfair for those who lost the battle to cancer to then also lose the term they fought so hard to obtain. Miss D had acute lymphoblastic leukemia. She went through a stem cell transplant and was in remission for six months before relapsing. Even as her body wasted to a wisp of the young woman she was, she continued to come to the outpatient clinic for salvage chemotherapy and blood transfusions with an upbeat and hopeful spirit. And while Miss D succumbed to leukemia, her struggle was anything but passive. Her fight may be over, and she is no longer considered a survivor, but she will always be a warrior.