Young Cancer Patients at Risk for Loneliness and Isolation
A diagnosis of cancer is devastating to a person of any age. But for teenagers and young adults with the disease, it can be particularly lonely and isolating.
As reported on CBC.ca, a group of adolescent and young adult cancer patients and survivors, along with cancer specialists, met this past weekend in Toronto to discuss the issues and challenges facing young people with cancer. And they concluded that young Canadians with cancer are falling through the cracks of a system not designed for them.
Young people are more unlikely to seek medical help if they suspect a problem, and doctors may be less familiar with cancer symptoms in the young, said the workshop participants. Plus, young people with cancer lack peer support, because they are either in wards with young children, or once they turn 18, in facilities with much older adults they just can't relate to.
Mary Lye, spokesperson for the Childhood Cancer Foundation, agrees that the particular needs of teens during cancer treatment are not being met.
"In children's hospitals, teenagers are surrounded by little kids, four-year-olds who can't anticipate death, who can't anticipate the pain," she says. "And then at 18 you are sent to Princess Margaret Hospital where there are 80-year-olds. It's traumatic, and a lot of people fall out of the system because they don't want to be there. They don't get followed up, and so we don't get the data we need from the survivors."
Lye had her own experience with cancer when her daughter Harriet was diagnosed with acute myelogenous leukemia at the age of 15. "It was something we'd never dreamed about in our wildest nightmares," she says. Harriet was in Toronto's Hospital For Sick Children for eight months, enduring several major chemo treatments -- a trying time for the whole family.
"That age from 13 to 18 is very tricky. The beds are too small. They are in that stage in their life where they don't necessarily want to see their parents all the time," she says. "We had to sleep in Harriet's room for eight months, and that's not what any of us wanted to do. And you have doctors coming in and saying things in front of your teenager that they shouldn't say until they've talked to you so you can prepare yourself to then support your teenager. With a 3-year-old, if someone says, 'She's going to have this procedure,' they're not going to comprehend that. But a 15-year-old is sitting there, freaking out."
One of the ways Lye's daughter Harriet found support during her difficult ordeal was through a friendship with a teen cancer survivor. Lye had seen a posting on a notice board at Sick Kids that the Childhood Cancer Foundation would find mentors for teens with cancer. She contacted the organization, and they matched Harriet up with a teen named Sarah, who'd survived the same type of cancer Harriet had.
"A voice said, 'Hello, is Harriet there? This is Sarah,'" says Lye. "And you know what? If I heard her say nothing else and I put down the phone, it would have been enough, just to know that she had survived, that she was real. It was unbelievably hopeful. It was a turning point for me and Harriet and my husband, just knowing someone could get through this unspeakable ordeal."
Harriet found great support and friendship with Sarah, something that Lye never forgot. After her daughter had recovered from cancer, Lye went to work for the Childhood Cancer Foundation, and spearheaded a program to help teens with cancer find each other. She helped create Teen Connector, a social networking website for teens with cancer. Teens who register can make friends, get information and correspond with other teens with cancer or survivors of the disease.
Harriet (who's alive and well and living in Paris, by the way) became an ardent activist herself, initiating several fundraising and awareness projects, including "Cut Off Cancer," a hair-cutting event for schools that is now in its sixth year.
Lye says that creating Teen Connector was a way to gain control over the illness that could have claimed her daughter, and help the young cancer patients she comes in contact with every day.
"I can fix it for somebody because I didn't have this for Harriet," she says. "I couldn't do this for her, but I know the kids need it."