Young people with cancer face extra hurdles
MATTHEW Zachary was 21 when his left hand quit working. After months of misdiagnoses, doctors found a brain tumour. Specialists treated his cancer, which hasn’t recurred. But the experience changed him irrevocably. “I lost my life, but I didn’t die,” he says. A serious pianist since age 11, Zachary, now 44, had thought he would spend his life working in film, composing music scores. But the fine motor skills in his left hand never fully returned, ending any chance he could pursue his dream career.
“When you are a pianist and a composer, you use both hands,” he says. “Also, I am left-handed.” Many of his friends drifted away, in part because they couldn’t
handle his cancer and also because they were ready to move on, even when he couldn’t. He lost a lot of weight, and his hair, and he lived on a liquid diet for six months. He needed 17 medications to manage the side effects of radiation. All that
was bad enough. Even worse was his persistent feeling of isolation, both while he was in the hospital and during the years that followed.
There was no one he could talk to about his fears, no emotional support for people in his age group. “I was miserable, anxious, depressed and moribund,” he says. Moreover, hospital settings were not designed for cancer patients in their 20s who were too old for toy-filled paediatric wards and too young for the nondescript rooms that seemed more suitable for older patients. Although he wasn’t hospitalised for long periods, he recalls spending a week in a hospital room “full of 80-year-olds,” he says.
“There was nothing,” says Zachary, who had to move to Staten Island to live with his parents while under treatment. “I don’t say this angrily. This was the 1990s, and those systems just didn’t exist.” Fastforward to Jennifer Torres, 35, a mortgage analyst in Fort Worth, diagnosed last autumn with colon and rectal cancer. She underwent surgery, chemotherapy and radiation, and spent six weeks at Baylor Scott & White Medical Centre. Unlike Zachary, she stayed in a small wing that underwent a $2 million renovation to accommodate adolescents and young adults with cancer.
The rooms are sunny and spacious. There is a message wall where patients can write encouraging notes for one another. The wing has WiFi and smart televisions along with a large lounge area with game tables and a coffee bar geared to getting patients out of their rooms and mingling with their peers. Most important, Torres had access to an advocate called a “nurse navigator,” a social worker and others trained to help her deal with the social, financial, physical and emotional aspects of being a young adult with cancer.
“They helped me stay positive,” she says, choking up. “It made me feel special. You get to know these people so well. You develop a bond. It made such a difference in my getting better.” Of the estimated 1.7 million new cases of cancer that are diagnosed annually, about 70,000 involve adolescents and young adults, according to the National Cancer Institute. Adolescents and young adults with cancer, often called AYAs, have been an in-between, often forgotten population. Groups that advocate for them argue that research, treatment and survival rates have not kept pace with those of young children and older adults. “We are the invisible cancer generation,” Zachary says. – Washington Post.
Adolescents and young adults with cancer, often called AYAs, have been an in-between, often forgotten population.