Sharing the Burden

In August 1999, Yasuoka Yuriko noticed that her daughter, Ayako, was looking thin and pale, so she insisted that the 22-year-old see a doctor. As they waited for the test results, the doctor quietly slipped Yuriko a note while her daughter wasn’t looking.

Yuriko went to the restroom and opened the note with shaking hands. “It is stomach cancer,” it read. “Please hurry. There is no time.” Later, the doctor told Yuriko that Ayako had about a year left to live.

On September 21, three quarters of Ayako’s stomach, her gallbladder and two lymph nodes were removed. Lab results showed that the cancer had spread, and there was an 80 percent chance of recurrence. The doctor explained the situation to Yuriko but the medical terms sounded like a foreign language.

Ayako was put on anti-cancer drugs, and over the next three months, she suffered vomiting and diarrhoea, and lost seven kilograms.

Yuriko decided she needed to do more to help her daughter. “I needed the latest information on cancer treatments and courage and hope to fight my daughter’s cancer but there was no place I could go,” she recalls.

She started visiting the library at nearby Kochi Medical School, going early in the morning and staying until the evening, when she left to work at the cosmetics shop she owned. As a single mother with no-one to share her burden with, she was at her wit’s end. “I felt isolated from information and support,” she says.

Despite the obstacles, Yuriko was able to help her daughter. When Ayako started experiencing breathing difficulties, Yuriko wondered if it could be a side-effect of the anti-cancer drug, Cisplatin. She told Ayako’s doctor and he agreed to take her off the drug.

Eventually, in November 2002, Ayako’s treatment came to an end. Despite her joy and relief, Yuriko couldn’t forget how lost and alone she felt during her daughter’s ordeal. She wrote a letter to the local newspaper suggesting the creation of a support group for cancer patients.

Phone calls and letters supporting her idea started pouring in, and in December 2002, Yuriko formally launched Ikkikai, roughly translated to mean “sharing the joy”, with the goal of providing hope and information to people with cancer, and their families.

Ikkikai’s first meeting, held at a local university hospital, attracted 13 people, including cancer patients, relatives and the doctor who had looked after Ayako. The group, which meets every two months, has organised talks by specialists and cancer survivors, outings and “chit chat” sessions for members to share their experiences and information. “Knowledge can empower cancer patients,” Yuriko states.

It certainly helped Tanioka Satoko. “I was very worried about my son’s blood cancer and a relapse of leukaemia,” she recalls. “But when I attend the group’s meetings, and meet other patients and their families and talk about our experiences, I am uplifted and encouraged and know that I am not alone.”

Ikkikai’s message has begun to spread. In 2006, the group’s membership grew to 100. The group also works to improve access to new cancer drugs. They have also helped set up a cancer support group in nearby Kagawa prefecture.

In the end, says Yuriko, the simple act of talking to other people who understand your problems can make the greatest difference.

“I think you can lessen your mental burden by just talking about your own insecurities with someone in the same position. I hope that as many people as possible would participate in the group.”