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ICCCPO - The International Confederation of Childhood Cancer Parent Organisations The international Survivors Meeting is a part of the anual ICCCPO meeting. To get more Infos, have a look at the ICCCPO homepage! I’ve Just Copied some very good Articles from There which I will share with you. Source: http://www.icccpo.org The ICCCPO Survivors’ Group - 2003 Anthony Penn The first ICCCPO survivors’ meeting was held in Luxembourg in September 2001. Prior to this, childhood cancer survivors attended the same meeting as the parents and health workers. Although the ICCCPO parents‘ meeting was interesting and many of the issues pertinent to us, it was recognised that our needs as survivors differed from those of parents, and with the support of the ICCCPO committee and guidance of Prof. Mark Chesler (Parent of a long term survivor (LTS) of childhood cancer and ICCCPO Board member), the ICCCPO survivors meeting was initiated. Our intention was to create a forum for survivors from all over the world to share their experiences in a friendly, unthreatening environment. The first meeting focused on sharing individual experiences while undergoing treatment for cancer. We have now evolved into an organisation primarily concerned with issues faced by long-term childhood cancer survivors, and more particularly, long-term survivor groups. This was reflected in two key sessions at the 2003 meeting in Barretstown, Dublin: “Long term follow up of children with cancer”, where we discussed how, where and by whom we would like to be followed up, and “How to set up a cancer survivors group in your own country”. This was the most popular session, and we will continue to focus on this fundamental topic in future meetings. In order to facilitate the aforementioned sessions, experts in their respective field presented their thoughts on the topics, and we then discussed them in small groups. This again differed from previous meetings at which only survivors and Mark Chesler were present. Our meetings are not all hard work! We also have a lot of fun. It’s a great place to meet new friends and have a good time. Saturday afternoon was spent practising archery and wall climbing, and the Irish Ceili dancing night, though rather tiring, was especially entertaining. 21 survivors and 2 siblings from 14 countries attended the Barretstown 2003 childhood cancer survivors meeting, and the age of survivors ranged from 16 to 29 years. There were representatives from Western and Eastern Europe, North America, New Zealand and Asia. Most survivors were representatives of their own national or regional childhood cancer groups, or were interested in starting up new survivor groups. Here is our mission statement and goals as defined at the 2003 ICCCPO survivors group meeting: Mission Statement Young adult cancer survivors brought together to share resources and experiences in order to support and develop childhood cancer survivor organisations everywhere in the world. Goals of ICCCPO Survivor’s Group - Support the implementation and development process of national and local survivor groups. - Establish an international network that provides information and resources for survivor groups. - Connect with relevant professionals to provide information on important issues faced by childhood cancer survivors. - Energise and inspire cancer survivors worldwide. The ICCCPO Survivor’s Executive Committee In order to preserve continuity and ensure the success of future meetings, an executive committee has been formed, consisting of six survivors who will be working together to help plan the next meeting in Oslo in 2004. The ICCCPO survivors Committee members: Chairperson:Dr Anthony Penn(UK), Survivor for 16 years - Previous Executive member of CHOC (South African childhood cancer parents organisation) - Has been involved in all three ICCCPO survivors meetings - Medical Doctor at Frenchay Hospital, Bristol, UK. Vice Chairperson: Prudence Walker (New Zealand), Survivor for 4 years - President of CanTeen - The New Zealand Teenage Cancer Patients Society - Studying B.Health Science (Rehabilitation) Secretary: Alex Brownsdon (UK), for 17 years - Active member of TOPS (Teenage Oncology Patients Support, UK) - 2nd ICCCPO survivors meeting - 3rd year of B.Science in Psychology Communications Liaison:Eva Coenen (Netherlands), Survivor for 9 years - Actively involved in organising survivor activities in conjunction with VOKK (Dutch Childhood Parent Organisation) - Has been involved in all three ICCCPO survivors meetings - 4th year Medical Student ICCCPO Liaison: Nicole Bruton (Canada), Survivor for 20 years - Active in the Alberta Kids. - B.Arts (Psychology), Currently studying towards B.Education Developing World Representative: Aditya Soelistyo (Indonesia), Survivor for 5 yrs - Eager to establish survivor’s organisation in Indonesia - Studying B. Information Technology SIOP 2003 The survivors’ opinions on long term follow up were presented at the International Society of Paediatric Oncology (SIOP) 2003 Annual Conference in Cairo, in the session: “Long- term follow-up guidelines: Research initiatives in risk-based screening of childhood cancer survivors.” The talk was extremely well received, and the response from the doctors present was overwhelming. Doctors and other decision makers are clearly interested in what we, as survivors have to say about our care, which is very encouraging for our future as advocates for childhood cancer survivors all over the world. Contact Magazine An article detailing the activities of the ICCCPO survivors group will be published in a special international issue of Contact, a magazine for families of children and young people with cancer to coincide with the International Childhood Cancer Day. on 15th February 2004. The international issue will be translated into several key languages and distributed globally through ICCCPO and SIOP. Feedback, Barretstown 2003 Overall we all had a great time, met lots of new people and learnt a lot about how childhood cancer groups work in different countries. Some of the comments made in the feedback questionnaire illustrate this: “Meeting new people and making friends with other survivors from other countries – gaining multicultural awareness.” “Finding out and sharing experiences – we will be able to use what we have learnt to help others.” “Walking away feeling excited for future survivors.” “Everything was great!” “This meeting was even better than I expected and I gained a lot from it.” The next ICCCPO survivors meeting will be held in September 2004, in Oslo, Norway, and we are looking forward to continue sharing ideas and experiences with other childhood cancer survivors all around the world. Anthony Penn Chairperson, the ICCCPO Survivors’ group antpenn@doctors.org.uk
The Survivors’ meeting, Oslo 2004 – a great success Nicole Bruton We are pleased to announce that the annual ICCCPO Survivor Meeting held in Oslo, Norway was a great success. This year we had over 30 delegates from across the world, including Austria, Britain, Canada, Germany, Greece, Finland, Japan and New Zealand. The Survivor Executive Committee, made up of six survivor representatives throughout the world, had the opportunity to meet prior to the commencement of the conference at which time they outlined objectives and designed a strategic plan towards achieving the goals and objectives of the ICCCPO Survivor group. Throughout the three-day conference delegates attended sessions pertaining to: - How to Set Up a Survivor Group in Your Own Country, - Supporting Newly Diagnosed Children with Cancer and - and Fostering Hope in the Face of Adversity.
Prudence Walker, of New Zealand, led an information session on the process involved in establishing and maintaining a survivor’s group in one’s own country. As a follow-up, delegates participated in a sharing session where individual survivors exchanged personal experiences, resources and knowledge gained from creating a Survivor’s Group in their own country. This was an invaluable experience for those individuals who are currently attempting to set up their own group. The desire to give back to our communities, especially the hospitals that played such a large role in our treatment, appears to be a consistent goal for many of the survivor groups that were represented at this year’s meeting. A session relating to developing and implementing skills required in supporting newly diagnosed children with cancer and their families encouraged delegates to practice their acting skills through role-playing the many ways we can mentor families in various situations. A huge thank you goes out to Michigan University Professor Mark Chesler, parent of a long-term survivor and ICCCPO Board member, who provided the resources and knowledge, which made this session a success and allowed us to laugh as well as learn from our unique cancer experiences. The conference was not all work and no play! Thanks to the phenomenal leadership and organization of Steinar Krey Voll, of the Norwegian Survivor Group, we were spoiled with a trip to three local museums followed by a boat trip to Langoyenne islands in the Oslo fjord. It was on the islands that we played paint ball and explored the beautiful landscape of the islands. To top it all off we were treated to in a magnificent Norwegian shrimp buffet prior to heading back to our hotels. Next year’s ICCCPO Survivor meeting will be held in Vancouver, British Columbia, Canada. We are very excited about the up coming meeting. Program planning and ideas are already in the works for next year’s conference. We are looking forward providing an incredible program and quality experience such as the one we had in Norway. With empowerment and energy gained from this year’s meeting, the Survivor Executive Committee is confident about the fun and excitement that awaits us all in Vancouver 2005. See you In Vancouver!!! A quote from the letter of a mother who traveled with her son (a survivor) to Oslo may illustrate the impact such a meeting can have: “…let me tell you a bit about my son. You saw yourself how depressed the boy was. For eight years I tried to stimulate him in a positive way and hoped to make him more interested in learning and striving for a good future for himself. But he always replied: “Leave me alone, there is no future for me.” With a lot of difficulties I convinced him to come with me to Oslo to meet with other young survivors. And already after the first day of the meeting he was changed. Now, back home, he is full of energy, he goes to school voluntarily and asked the teacher to teach him more English because he is dreaming of traveling to Vancouver. He helped me to prepare a meeting for other young survivors of our group which was very successful. I am so grateful that this all happened.” N.K The ICCCPO Experience
I have gained so much from this experience. Everything from the people I met, to the different sessions I attended, to the guest speakers, is going to be something to remember forever and guide me through the rest of my life. One of the main things I learned is that there are survivors all over the world, like my survivor group in Canada, trying to make a difference. The survivors that I met at the conference are all on a different walk of life. Some groups were well established, and had set up programs where they were visiting newly diagnosed patients in the hospital. In some countries, if you told people you were a survivor, you put your career in jeopardy. For me this conference meant the celebration of survivorship, friendship, support and knowledge. I was inspired by new ideas, different ways of overcoming obstacles, and I felt a sense of renewed passion. The group I work with in Canada called “Mentors for Life”, have had their fair share of closed doors and disappointments. I now know how to approach and plan some of the projects that we were trying to launch, by talking with some of the members of the ICCCPO meeting, who have had success in certain areas. I know we can take our dreams farther. It was easy to build a relationship with people through this connection, because you have a common bond that you share. We hear about one another’s stories, our pain, our courage, the fight, drive, and passion we have about what we are trying to accomplish. Sometimes very few words have to be said to feel understood. I met a lot of energized people, and was able to quickly develop relationships that will continue to grow. I look forward to a shared stimulated sense of inspiration that we can provide for each other. I was happy and eager to share our team’s successes, for others to learn from. There were many people at the meeting that walked away with new ideas from our group. But, my main goal was to discuss areas where we did not have success. What a great opportunity to get some constructive advice! I heard, and learned from others. I asked as many questions as I could to bring back a clear understanding of what we need to do to accomplish our goals with great success. I was eager to learn about the steps it takes to develop a program to enter into hospitals, how to talk to newly diagnosed patients and to give hope to their families. I now realize that we need to take a few more baby steps to build a foundation instead of jumping into something unprepared. I will be able to incorporate other programs, involving cancer survivor siblings, into our group. As a whole, I have been inspired. As a person who wants to change the way people interact with childhood cancer, I can succeed with the strength of others and the community of a caring team. Carie Wik Mentors for Life. Canada
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