Support and advocacy groups for survivors of childhood cancer
Mark Chesler, with the assistance of local survivors
As more young people survive cancer it is increasingly common for them to seek other survivors like themselves. In more or less organized groups survivors compare their experiences and coping patterns, find support for their life choices, participate in social and recreational activities, and begin to advocate for change in medical and social services. Many play an important role in the medical system or in parent groups, meeting and talking with newly diagnosed children and families. These young people are a tremendous resource in the worldwide fight against cancer and in the effort to improve the quality of life of patients and survivors.
Recent research indicates that many survivors of childhood cancer would like to meet and talk with other survivors. ICCCPO seeks to serve this need and to learn from survivors’ experience and wisdom by helping to organize survivor conferences at its Annual General Assemblies. At these meetings, groups of survivors from different countries meet with one another, talk with experts, and share their ideas and concerns with parents. ICCCPO also is trying to support and strengthen the development of survivor groups in other countries which have not yet established such programs.
At the 2002 meetings in Porto we asked representatives of several national survivor groups to create reports of what they did in their own countries. Following are some examples and excerpts from these reports. IF YOU HAVE STORIES OF WHAT SURVIVOR GROUPS ARE DOING IN YOUR COUNTRY OR CITY PLEASE SEND THEM TO US.
United Kingdom: TOPS (Teenage Oncology Patient Support):
[By Tracey Chorley, Alex Brownsdon and Byrony Carr]
TOPS was set up for teenagers and young people between the ages of 12-25 who have or have had cancer or leukaemia. TOPS was founded in 1993 by a group of oncology nurses at Bristol Children’s Hospital. It is now part of the existing cancer charity, CLIC (Cancer and Leukaemia In Childhood). The aim of the group is to provide both social and emotional support for young cancer sufferers.
TOPS is mainly based in Southwest England and is completely free of charge to all its members. With the help of many doctors, nurses and volunteers the organisation provides a wide variety of different events throughout the year, including art and music weekends, bowling and cinema trips, as well as the annual summer holiday in South Wales. The week’s holiday enables both able and disabled bodied members to work together to participate in many fun and rewarding activities, such as archery, canoeing and climbing and also provides a valuable support network within the group. In addition, the holiday provides a peaceful environment allowing members to escape from the fears and anxieties of hospital treatment and to relax in the company of others who share similar experiences.
TOPS also provides a quarterly newsletter that is distributed to all its members and therefore, allows those who are unable to attend the various organised trips to continue to be included in the group.
The newsletter contains a number of reports concerning past and future events, profiles on members, as well as photos, poems and puzzles.
There is also a TOPS pen pal list, which includes the names, addresses and email addresses of those members who wish to be part of the rapidly expanding network of support. Members find the pen pal list very important for keeping in touch with each other and maintaining close friendships.
TOPS hopes to provide communication, support and life long friendships for all its members.
[By Ruth Langenbach]
Twice a year there is a weekend meeting in Bonn for young people with cancer. Forty to fifty young people from all parts of Germany come there. At these meetings they exchange experiences and have fun together. Informational lectures are given by doctors, psychologists and patients. On Saturday there are workshops on different subjects, as well as arts, sports or conversation groups. In the evening there are parties with music and dancing. These meetings are very useful because they help build common bonds and a community spirit among survivors..
Each year, the German Kinderkrebsstiftung (Children Cancer Aid Society) organizes a week-long biking tour (die Regenbogenfahrt or Rainbow tour) for approximately 20 former patients, who bike through different parts of Germany to visit pediatric oncology centres. The bikers try to encourage the young patients on the wards by demonstrating that life can be very active and rewarding again after such a terrible illness.
A magazine, “TOTAL NORMAL” summarizes the content of the Bonn-meetings, includes contributions by former patients as well as medical news and articles of general interest.
Netherlands: The Dutch Youth Support Group BRUS:
[By Eva Coenen]
Ten years ago, in 1992, the Dutch support group BRUS was established. Unlike other support groups, BRUS wasn’t just meant for survivors of childhood cancer: siblings, children still in treatment and children from whom a brother or sister had passed away, also are involved. Although people’s personal circumstances differ, the age range in the group is from 12 to 35. Despite these differences, the group works well and many fine friendships build up between survivors and siblings of all ages. Since the day it was founded the group has played an important role in the parents’ organization (VOKK). The VOKK itself has become very active over the past 15 years in producing books, brochures and other materials on the subject of childhood cancer, and helping to organize parent support groups and symposia. Its goal is to help parents who are in the difficult situation of having a child with cancer and to inform the broader public about this subject.
Every year at least two general VOKK meetings are held. During those meetings the BRUS support group discusses subjects young survivors think about and/ or struggle with, such as guilt, problems in school and relationships with peers and parents. In addition, every year a weekend-camp is organized. From Friday night until Sunday afternoon a mixture of activities is offered: horse riding, walking by the sea, nightly dances and parties and early morning group discussions. Some senior group members usually volunteer to guide these weekend sessions. The number of participants has fluctuated between 25 and 45. At the weekend camps, or during VOKK meetings, people who wish to be in one-to-one contact with one another can exchange telephone numbers and establish closer contact. People very often meet each other during one of these and personally exchange addresses and stay in touch. Friendships such as those turn out to be very important. Other organizations sometimes invite the survivor group to join their activities: in that way a trip in some (50) sports-cars to the Dutch racing circuit was arranged.
For three years a quarterly magazine for young people living with cancer has been published. ‘Lef’ is read eagerly by its members and is also spread in hospitals treating children with cancer. Each edition is on a specific topic, trying to offer different views on a problem. BRUS and VOKK meetings and activities also are reported in this magazine. The purpose is to inform people who were not able to participate about what occured (and how much fun it was).
[By Emily Tsirou]
Survivors hold regular meetings at the office of the parent organization (FLOGA). There people exchange information and share experiences, suffering and concerns. In addition, they attend and participate in medical seminars/lectures in order to gain up-to-date information about childhood cancer issues. Many survivors also help in the preparation of presents for children who come to parties for children who are in the hospitals during Christmas and Easter. Some survivors also make visits in departments of some hospitals. There they talk with patients and cheer them up by drawing, reading, playing etc.
Many siblings also take part in these meetings and activities.
In the future survivors in Greece would like to publish a magazine or newspaper with medical news, interviews, and stories about individual survivors. In addition, they wish to translate medical articles into language that might be useful for survivors and for children in therapy and parents. These materials could be distributed in hospitals and sent to members of the FLOGA association. Working with FLOGA, survivors hope to help with the operation of the new “House of the Children of Floga” – a building with 23 rooms for families from provinces whose children must have their therapy in hospitals of Athens.
[By Madalena D’Orey and Patricia Goncalves]
In Portugal the survivors’ group is called “The Barnabe’s Group”, a group of young children and teenagers with cancer, some of whom are off-treatment, some cured, and some still on treatment. They have meetings in which they share their life experiences with other young people with cancer. This activity, called Barnabé Volunteers, is a program of support for children and teenagers provided by former young patients. Survivors also engage in a lot of social and recreational activities, including holiday camping, rafting, canoeing, rappelling, attending soccer games and circuses.
The survivors group also works closely with Acreditar, the Portuguese association of parents and friends of children suffering from cancer. Together with Acreditar, special programs for survivors and children being treated for cancer include: The Barnabé Book – a coloring book enabling children to understand the treatment process by way of a story; The Teenagers Book – a diary of feelings and emotions written for the teenager; Gaspar Químio – a cartoon storybook explaining the chemotherapy process and its purpose; Rui Rádio – a cartoon storybook explaining explaining radiotherapy and its purpose; and regular camps, weekend camps, day trips and various activities for children undergoing treatment.