In 2004, Ashley Rose was immersed in her Bachelor of Science degree at the University of Alberta and burning the candle at both ends, taking a summer course and working full-time. One day, feeling the weight of fatigue, Rose was walking across a parking lot after a class. She looked at a cement block and thought it looked comfortable enough to be a pillow. The 21-year-old had never been so tired. A couple of weeks later, she was sitting in a large lecture hall. Every time she extended her neck to look up from her notes to the professor, her breath would catch. It was time to see the doctor.
A few days after her appointment, Rose arrived home from her second day as an occupational therapist practicum student, to discover two missed calls from her doctor and three messages from a surgeon. Nervously, she dialled the doctor’s office. They were closing but told her if she could make it in 15 minutes, they would stay open for her.
The rain was pounding as she raced 80-kilometres-an-hour to hear the results.
It was thyroid cancer. “I was crushed,” Rose says. “They figured that I’d had it for five to 10 years. It had spread into my breast tissue.” The diagnosis would change her.
Young adults who get this kind of news are often blindsided. They’re at the prime of their lives. It can change not just their health but how they relate to friends and family. It’s especially difficult for young people to handle these changes in their relationships. Rose may have had family and friends surrounding her while she was being treated but she still grappled with feelings of isolation and rejection.
And she wasn’t the only one in the family who was sick. Her father was being treated at the time for non-Hodgkin’s lymphoma; Rose was admitted to the hospital just two days after he was discharged. “I was worried about my family,” Rose says. She didn’t want her diagnosis to add more stress.
Once she recovered from her surgery, Rose returned to her life as a student while grappling with cancer. “I found the hardest part was perspective. My friends were all going out travelling and partying,” she says. “I was bound to the outcome of my medical tests.”
In between classes, she would visit her doctor, whose office was near the university at the Cross Cancer Institute. But Rose wasn’t finding the peer support that she needed. She did discover who her friends were. She drifted apart from some who seemed unable to handle the fact that she had cancer. One of them was a close friend who was in medical school but couldn’t cope with Rose’s illness.
Others seemed to rally around her. Three friends in particular stuck by her; one of them made her a stained glass angel so Rose could always have an angel beside her. During one hospital visit, Rose was recovering from an operation and was nauseated from the anaesthetic. “When friends come to the hospital to hold your puke bucket – it solidified friendships to this day.”
Later, Rose’s mother told her that she had seen the same unflappable friends in the hallway, pale and grim, even crying, out of Rose’s sight so as to not upset her.
Rose still needed to talk to others her age who could comprehend what she was going through. She turned to Young Adult Cancer Canada, a national organization to support young adults with cancer. She also signed up for a nine-day kayaking trip on the Owyhee River in Oregon with Survive and Thrive, an annual expedition for young cancer survivors, last summer. The expedition provides young adults a chance to reflect on their journey with cancer and an opportunity to reclaim their lives.
“I thought I was doing great but there’s something to be said about being with other people who’ve gone through the same thing,” she says. “It’s not that cancer defines who we are. It’s part of who we are.”
Réjeanne Dupuis, a psychologist at the Tom Baker Cancer Centre in Calgary, says isolation stems from friends and family who don’t know how to interact with a cancer patient. “There’s a stigma about being sick,” Dupuis says. “People know it is a life threatening issue. People don’t know what to say to a cancer patient.”
And cancer patients, especially young adults, don’t want to burden their friends and family.
“Often, they don’t know what they need,” Dupuis says. “They don’t feel like they are contributing anymore.”
Margo Schulte Long felt she wasn’t putting as much into her role as a mother to her identical twin babies and three-year-old daughter as she wanted to after her diagnosis with follicular non-Hodgkin’s lymphoma in 2002.
Her pregnancy was problem-free. That summer, by the time Georgia and Mikal were two months old, Schulte Long had them on a regular breastfeeding schedule and she was feeling great by getting back in shape through jogging. One morning she was checking herself out in the mirror, thinking how well she was doing about reclaiming her body from a pregnant state. Schulte Long turned sideways and noticed that she still looked like a woman who was in the third month of pregnancy. She ran her hand over the area and felt a large ridge around her belly that couldn’t be extra fat or excess skin. It was a lump that wasn’t going down. Her doctor suggested it was fibroids and booked an ultrasound. Schulte Long eventually found that she had a slow-growing and currently incurable cancer. Her largest tumour was 17 centimetres in diameter.
Schulte Long, 31 at the time, says she couldn’t release her feelings about her diagnosis.
“At first, I was in pretty extreme terror and then, seeing how everyone else was reacting around me, I changed to damage control,” she says. “I started worrying how other people were doing.”
During her chemotherapy and a new immunotherapy treatment, she would end up in a lot of pain and vomiting, resulting in several trips to the emergency room. By January, it was decided that the clinical drug trial wasn’t working and she was put on a different treatment.
“I was a mess. I spent a lot of time either with home care or being in the hospital. I just had to make it through each minute,” says Schulte Long.
In the meantime, her first husband and parents stepped up to help with the three girls. Schulte Long had a difficult time trying not to resent that she was missing parts of her children’s lives, especially the twin babies.
“It was really hard to know I wasn’t raising the babies. The babies didn’t know me. I didn’t have anyone to talk to about it. Just like you die alone, you go through sickness alone. It’s such a singular, solo journey,” she says.
Her form of cancer usually targets older people and Schulte Long couldn’t relate to other cancer patients.
“When I got this, there was no one to talk to. I couldn’t be part of the breast cancer movement. I had no group,” she says. “I have the disease that’s only for 65-year-olds.”
Schulte Long is now in remission. She coped with her cancer by starting the SnowBall, an annual fundraiser for the Alberta Cancer Foundation, in 2003. The last SnowBall was held in 2009 and the combined events raised between $60,000 and $70,000 for the foundation.
Both Rose and Schulte Long still feel there is much room for growth to support young adults with cancer in Alberta.
Rose says she is living a dream life right now as she just landed her perfect job with the Edmonton Catholic Schools and has bought her first house. Schutle Long has remarried and is busy maintaining a household that sometimes holds five children.
This past April, Rose attended an Edmonton movie screening for Wrong Way to Hope, a film about a group of young Canadians with cancer who went on the expedition on the Owyhee River, led by 25-year-old Mike Lang. Following the screening, Rose asked the 60-member audience if she could collect names and contact information for an Edmonton support group for young adults with cancer. Eight young people gave her their information. Rose has been researching how to start a group and how to reach out to young people. She knows that many young cancer patients go through what’s called “reintrajectorization,” the process of reconnecting with their old lives while grappling with the disease.
“Long after diagnosis, you realize what impact it has on your life, personality and future,” Rose says. “Don’t be afraid to live your life. There is hope for life after cancer.”