“What is cancer?”
“Something you can die from,” an adolescent in remission once told me.
He later described his treatment to me, saying, “if it weren’t for the treatment, I would’ve been….” His voice trailed off as he swiped a finger across his neck and made a krrr sound. “It’s true,” he concluded, nodding.
This teen, in this moment, chose to express himself outside of words. He had been comfortable defining cancer explicitly in relation to “death” before, so why did his words falter now? I remember being taken aback by this symbolic beheading, an action fraught with connotations of cancer as both violent but also punitive. I wondered how many other children associated cancer with death, how many felt as though they were receiving a death sentence when diagnosed.
In a world where cancer is one of the leading causes of death for adults, it’s no wonder why many people instinctively associate cancer with dying. With cancer as a disease commonly in the spotlight in society—with Cancer Moonshot and other awareness efforts towards prevention, treatment, and cure ever-present in the media—I worry that many kids have fears of death earlier on that often go unaddressed. A fear of death can be held by any young person with cancer, even those with highly treatable forms.
With these high cure rates for some childhood cancers, I can understand why discussions about dying may not immediately enter into the picture. I feel like conversations about death and dying often happen late in the course of treatment, sometimes as they should. That being said, I think it’s important for children to feel comfortable voicing any concerns that they may have about what it means to have cancer as a young person.
This conversation illustrated to me the importance of understanding a child’s fears upon diagnosis and throughout the course of treatment. Another teen I spoke with defined cancer as “[s]omething… that… makes you special…” I asked her how, and she proceeded to explain “cause…I don’t know. Cause, you get to meet a lot of people with that and not a lot of people are able to do that.” To her, cancer was something that she valued. She appreciated the people that she was able to meet because of her cancer. Her perspective on cancer was less antagonistic and more thankful for the good that had come out of her diagnosis.
This, to me, is one of the reasons that palliative care and child life support early in a child’s cancer diagnosis can be especially instrumental. These specialists devote a great deal of attention to a patient’s understanding and ability to cope with a cancer diagnosis. Since cancer can mean something entirely different to each and every individual, taking the time to focus on a patient’s perspective on cancer can improve a young person’s quality of life and enhance healing.
Simply asking can make all the difference: What does having cancer mean to you? How do you feel about your cancer treatments? What worries you about the future? From open-ended discussions to coping activities, palliative care and child life specialists are equipped with tools to delve into the psychosocial complexities of a cancer diagnosis, be it a fear of death or a new perspective on life. But these are questions any provider can ask; anyone can express an interest in the many ways cancer permeates into one’s life. By asking, we can show youth that we care.
Trisha Paul is a third year medical student at the University of Michigan Medical School who graduated from the University of Michigan with a B.S. in Honors English. She recently published the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer, and she aspires to become a pediatric oncologist and pediatric palliative care physician. Trisha chronicles her explorations in learning, researching, and teaching about illness narratives at illnessnarratives.com.
Comments from Karen Ladner Haas about how she has dealt with the issue of death with her son Tobin, who is a 14 year cancer survivor.
I didn’t gloss over the severity of cancer, but when Tobin was six, death from cancer became real. I talked to Tobin and his little sister about the fact that the cancer their friend had was not curable. I emphasized that it was different from the cancer Tobin had. Our young friend passed away shortly after. When explaining it to someone, Tobin said that their friend was not sick anymore and that she was in Heaven.
A few years after that, Tobin expressed his fear of dying. I asked him questions and answered his questions. I assured him that we would do everything possible to help him to fight cancer. We talked and prayed and read the Bible and I reminded him that we have lots of friends who have died, and that it’s important to remember that they aren’t sick anymore. I reminded him that it makes us sad because we miss them, but they are okay, not hurting anymore.
Many young friends have passed away from cancer. Tobin has been motivated by the deaths of his friends and other children and teens to be an advocate for childhood cancer research. He isn’t scared; instead, he is determined to act.
In taking the approach that we did, by facing the questions head on, we made death something which didn’t have to be feared. We live with hope for a future, doing what we can to help spread awareness and the need for childhood cancer research. Tobin volunteers for Childhood Cancer Canada, Meagan’s Walk, and SickKids Hospital.
Karen is a writer, volunteer childhood cancer advocate. In the past, she was a financial planner and homeschooled for nine years. She is married to Frank and mom to Tobin and Katriel. Over the past 14 years since Tobin’s diagnosis, Karen has supported other parents with similar experiences and has been part of many organizations which raise money for childhood cancer research and awareness, especially paediatric brain tumours. Notably, Karen is a very active volunteer with Meagan’s Walk, a volunteer-based organization for paediatric brain tumour research, and organizes Rocks for Research, a curling bonspiel which raises funds for paediatric brain tumour research and Camp Oochigeas.