• © 2009 by American Society of Clinical Oncology

“I Think You Are Pretty; I Don't Know Why Everyone Can't See That”: Reflections From a Young Adult Brain Tumor Survivor Camp

Little in my 33 years as a pediatric oncology nurse practitioner prepared me to participate in the Heads-Up Conference held at Camp Mak-A-Dream in Gold Creek, MT, last summer. Thirty young adult survivors (18 to 25 years of age) of pediatric brain tumors gathered for education on late effects of therapy, mutual support, and recreation. Attendees came from all over the United States and had been treated at a number of centers. Most received multimodality therapy, including surgery, chemotherapy, and radiation therapy. I attended to facilitate small group discussions and to instruct survivors about health promotion. But instead of teaching, I became the student.

I learned that although I saw brain tumor survivors as vulnerable, socially deficient, and quiet, in this unique setting they emerged as resilient, thoughtful, and eloquent. I was amazed at the metamorphosis in their ability to share common experiences and convey complex emotions. Most impressive was their empathetic and enthusiastic support of each other. The level of communication was far superior to what I experienced in hospital-based settings or community-based support groups. I came home convinced that optimum support for young adult brain tumor survivors requires a setting removed from parents, daily limitations, and time constraints to foster the expression of their concerns, their fears, and their struggles.

Improvements in therapeutic radiation technique as well as advances in diagnostic imaging, neurosurgical technique, and supportive patient care measures over the past three decades have resulted in an increased 5-year survival rate for children diagnosed with CNS tumors.¹ However, survivors of childhood brain tumors struggle with serious adjustment, social, and emotional problems resulting in a poorer quality of life.^2,3 They have difficulty obtaining employment and health insurance. They marry less often or at a later age and remain at home longer than their siblings.⁴ In the clinical setting, many survivors present themselves as quiet and uncommunicative. I have been guilty of discussing important concerns, such as compliance with hormone replacement therapy and seizure medications only with a parent, rather than the patient. However, survivors who attended this camp emerged as eager to be responsible for their own care. When they feel free to talk of their health, they are thoughtful, insightful, and resilient.

Three major themes emerged in our camp discussions: 1) Survivors live in social isolation. 2) Survivors are aware of their limitations and that they are perceived as deficient. There is a disparity between what they think they are and how they are perceived. 3) Survivors eloquently express their fears and concerns, empathetically supporting each other.

Adult survivors of childhood brain tumors live isolated lives. Group participants reported no peer interaction with individuals having a similar medical experience (diagnosis, problems, and so on). Parents are their best friends, but this situation also hinders engaging in new experiences or achieving more independence. Survivors preferentially interface with technologies that isolate them such as video games, television, or the Internet. They express a great sense of loneliness. One of the survivors at camp was nicknamed “Jukebox.” He knew all the words and tunes to popular songs because he wrote down the words to every one and listened to them repeatedly, having nothing else to do. Another survivor simply liked the fact that everyone knew his name. “Nobody wants to know your name,” he lamented, “when they think you're stupid.”

Contributing to their sense of isolation and loneliness, survivors also related that they suffer a burden of bullying. This bullying exceeds that of normal adolescent thoughtlessness or pervasive junior-high teasing. Incidents reported by survivors reflected premeditated, hardcore, demeaning ridicule. Survivors with hypothalamic obesity are routinely called “blimps” or “fat asses.” They are ridiculed as slovenly or undisciplined even by important adults in their lives, such as teachers. Patients with ataxia recounted having their unsteady gaits aped and mocked by other students. For example, healthy, able-bodied students would limp down a school hallway in front of the survivor, stumble into lockers, roll on the floor, mimic convulsions, and encourage other students to laugh hysterically. Individuals with dysarthria are ridiculed as retarded and dismissed as having nothing of value to say. Those affected by facial nerve palsy are labeled “pigs” or “ugly” by classmates. Intense bullying was a common experience among camp participants. Survivors felt others thought they were too dumb to understand that they were being ridiculed or too simple to really care. Even more distressing was that they failed to relate the bullying to parents or other support individuals who might have been able to lessen their suffering. Until this camp, many survivors told no one of this abuse.

Survivors were especially excited to come to camp because they needed to learn how to play. Work and school assignments demand a disproportionate amount of concentration, attention, and time. Homework often requires up to six hours per night. Extended repetition is necessary to overcome short-term memory deficits and master even basic academic skills (spelling, math facts, and historical dates). Therefore, as a group, they had experienced little time to play. Recreation was never a priority, and they didn't know how to have fun, so they came to this camp to learn to play.

Survivors report feeling they are damaged. They are “less” now. Multiple, long-term, physical morbidities complicate their daily living. They feel burdened by required medical interventions, such as taking hormone replacement therapy or testing their blood sugar multiple times each day. Interfacing with teachers and employers who do not understand the demands of these medical interventions embarrasses and frustrates survivors because, once again, they are perceived as disruptive, deficient, and “less.” Survivors feel more vulnerable than their peers or siblings, and fear recurrent disease.

Survivors reported limited opportunities to gain new skills or to advance, especially in their jobs. Survivors who worked as sackers in a grocery store felt they could be a cashier during slow times. They knew the process and were familiar with the grocery scanners. They understood their limited math skills, but reasoned this did not matter since the cash register told them how much change to give customers. However, they were not given the opportunity to even try to be a cashier, which would pay a more livable wage. Survivors working in an office setting are delegated to menial tasks without the opportunity to advance. They are aware that other young adults hired after them advance to more responsible positions while they are passed over for promotion. Most reflected resilience in light of these limitations and consistently expressed an attitude of “I'll show them.”

Survivors were articulate and insightful in communicating personal and social concerns in these discussions. Even brain tumor survivors with cognitive delay and communication disorders spoke eloquently about complex emotions such as family disruption and personal grief. “My mother is drinking again and that makes me really, really sad,” said one survivor. “My Granddad died last year,” another grieved, “It still feels like a part of me died with him. We went everywhere together, fishing, to town. I feel like there's this big hole in me.” Survivors were also surprisingly sensitive, empathetic, and supportive of each other. “I'm the nervous type,” one survivor shared, “I'm scared all the time that my tumor will come back, so it makes me nervous.” “We're all scared, man,” came the reply, “You just wear your scared on the outside.”

Survivors with hypothalamic obesity or facial nerve palsy reported awareness of their external cosmetic deficits, but feeling they were pretty on the inside. They wished people, especially peers, would make the effort to see the “real” them. To a young lady with facial nerve palsy who tearfully lamented that she would never be attractive, another survivor replied, “I think you're pretty. I don't know why everyone can't see that.”

The social and medical problems related by the survivors at camp have been well-described.^5–7 Until recently, however, little has been written about the lived experience of these individuals. Boydell et al² defined the specific social competence needs in survivors of childhood brain tumors as tension between invisibility versus visibility, integration versus isolation, needing special help versus resenting that help, and having unrealistic versus realistic goals. Zebrack et al⁷ indicated the need for support groups as valuable in meeting the supportive care needs of young adult cancer patients and survivors. Feuerstein challenged clinicians to identify novel mechanisms of improving well-being among cancer survivors.⁸

Based on my experience in a clinic dedicated to long-term childhood brain tumor survivors, nonmedical issues are not easily addressed in a hospital setting. Time is too short. The environment is not conducive to in-depth discussions. Even community-based support sessions lack the leisure and distraction of play necessary for survivors to share their stories. Uniquely, a camp experience for survivors provided a supportive listening environment, the time necessary to foster trust and communication, and the opportunity to interact with others who have similar life experiences. In such a setting, camp participants learn more from each other than from the professional staff. Survivors communicate with clarity, honesty, and empathy, thus benefitting from the experience of others as they develop a network of communication that transcends one week at camp. They reminded me that they can speak for themselves, and I have incorporated this lesson into my clinical practice.

I learned at the Camp Mak-A-Dream Heads-Up Conference that we have failed to support the acquisition and development of life skills in these survivors. They are emerging into adulthood burdened by physical and emotional scars. The camp was a new window into the lives of these survivors. That effective communication takes time is not new or unexpected. What is new is the importance of a playful setting with peers as a vital key to honesty—honesty in expressing their problems is the prerequisite for improving life challenges. What came out clearly in these camp days is that this wounded group has the honesty to examine their complex problems and the resiliency to address them. It is now our turn to aid and abet their efforts.

• Received January 25, 2009.
• Accepted February 12, 2009.