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A Survivor’s Perspective

A Survivor’s Perspective

By Priesnanda Dwisatria, Indonesia, at the ICCCPO Conference in Vancouver (2005) – October 19, 2010

First of all, I am deeply grateful to the Indonesian Childhood Cancer Foundation (ICCF) which has given me a great opportunity to attend this conference. The foundation, which was founded in 1993 by several groups of parents whose children were afflicted with cancer, one of whom is my mother, has put a great deal of emphasis on the people who have got cancer and their parents. Supported by local and internationally proficient doctors and several international organizations (e.g. SIOP, ICCCPO, ESO), ICCF has become the front line of childhood cancer prevention in Indonesia. As a survivor, I am greatly honored to participate in all ICCF’s activities to come.

I didn’t expect much on this conference at first, but what I got was a whole lot more than I ever expected.

It started off casually. I was introduced to a lot of people. Doctors, parents, survivors, etc. Then, the conference began and I was supposed to be very active in it. But, they talked about things I did not know well enough to be with them. For that, I could only blame myself. So, I just listened and listened. My late father once said, “a good speaker is a good listener.” And boy, he was right. Not only had I got a good impression by then, but also, I’ve learned so much about things concerning childhood cancer and the struggle behind it from many different perspectives (countries, either developed or developing).

The next day, I met survivors from all over the world. (Serbia-Montenegro, Philippines, Armenia, Sweden, Japan, New Zealand, Korea, Hongkong, Austria, Germany, Sweden, Netherlands, Romania, Russia, and of course, Canada.)

I must say, it’s kind of regretful that I didn’t have enough time to get to know all of them, hear all of their stories. However, I did hear some of them and when it comes to comparing stories about when they had cancer and how they managed to overcome it, it was never a dull moment.

One of the Canadian survivors, Robyn St. Amand, told me that he had to go through a vicious chemotherapy that literally was able to kill him. He was very skinny, like a skeleton and parts of the skin on his face were badly damaged. Plus, he has had a rough time with his parents who were getting a divorce so he had to stay with his grandparents. Hearing such a story really makes me feel that I was living in a Disneyland back then. However, there are no happy stories when cancer is involved. He was surprised to hear that I had to go through bone-marrow tests for two years every month. He admitted he only went through that horrible test once. Lucky bastard!

Then came the election of the new executive committee of the survivors’ group. Some of the survivors protested about one of the criteria, i.e; the candidates should have attended this meeting at least once. One of the protesters was James Auste, a survivor from the Philippines. He has been very actively involved with his cancer organization in his country for a long time (which makes me embarrassed, so to speak) and he thinks, along with some of us, that it is unfair to have this kind of criteria, considering many of the developing countries had great difficulties in bringing their survivors to this conference in the first place. Finally, the criteria was omitted, replaced by allowing any survivors who have any experience working with the cancer organizations to be eligible to become members of the committee.

Six candidates did some great presentations. However, only three new executive members were selected. One from India, another from Serbia-Montenegro and the other from Canada. I was very excited by these new members because those are the candidates I voted for.

The sessions we had were beyond my expectations. I thought we were going to have some boring lectures, but instead, we were doing interactive activities, like role-playing, creating presentations in groups, and group discussions.

For the mentoring session, we were divided into several groups. Each group was given a study case with a problem concerning mentoring. We were told to do some kind of role-playing also and how to solve the problem. It was great fun and we had a super time.

For the “How to be an Organizer session”, we were again divided into groups. Each group should choose a topic and prepare a presentation in front of everybody. The topic included Advocacy, Mentoring, Fundraising, and Developing International Network. A good question about whether or not those presentations are applicable in the real world was raised, which resulted in great ideas, yet simple presentations. For example, for the fundraising topic, the group suggested creating some designed postcards that can be sent through the internet, so that everybody all over the world can sell them. It’s a marvellous idea because it is so simple and can be done easily.

For the “Creating a Volunteer Base” session, we were divided once again into groups. We were asked to discuss about how to use volunteers in raising funds. In our group, we organized some kind of running event. We discussed it a lot and I was kind of surprised that one of the survivors had done this kind of event before and it involved 45,000 people. They all did it for charity. I asked why they became volunteers. They said they just did it as it made them feel good about themselves, that they were doing all this for charity. It is a culture thing and I feel glad we also have that sort of thing in my country, although we haven’t managed to stimulate 45,000 people to do things for charity in one event.

Another session that was unforgettable was the “Meet and Greet”. We had tons and tons of food from various countries. This is where we were mingling among a lot of people, getting to know them. It was fun. One of the survivors from Germany told me about her survivors’ group activities. They built some sort of exclusive camp for the kids with cancer so that they can have fun together (see German Presentation). It seems that camping for children is a cultural thing . I wonder if it also can be applied to children in my country.

A great show was performed at the “Meet and Greet”. The performance was done by all the Canadian survivors. All in all, it was a wonderful night. We got home quite late, hit a Japanese restaurant first and went straight to bed.

The farewell night was also unforgettable. It was called Dinner Cruise. We were taken by a big boat and travelled around Vancouver (which is basically an island connected by bridges). We had dinner (which was absolutely magnificent), had some drinks (one of the Canadian survivors suggested I had a Honey Logger, which is a kind of beer. It tasted great, especially in this cold weather), and had some dances. I didn’t do any of that, of course, that would be embarrassing. I just watched.

I also got to know some survivors from Japan and Korea. Their English was not so good, but somehow, we managed to tell each other our stories. One of the Japanese survivors had to go to Canada for medical treatment, because they do not have the proper equipment. I was quite surprised about this, as I thought that Japan is one of the most developed countries. But that is the fact.

The next day, the Canadian survivors had another unforgettable event for us. A CASINO NIGHT! Yes, we were given some fake money and we could spend it on the games available there, like poker, roulette, black jack, etc. After that, we could exchange the money we had left for souvenirs. It was an extremely great night. We were having a blast and also we were bonding. I met an Armenian survivor and he told me that in his country, people with cancer or survivors do not have to pay for their own medical treatment. I was kind of stunned. I wonder when we are going be able to do that.

One thing that I got from this conference, or, as I prefer to call it, adventure, is that my eyes are wide open now. Meeting with so many survivors from other countries is truly inspiring. Things that they have done for kids with cancer are really driving me to do something similar here. Now that I’ve got the knowledge, the experience and the ambition, I finally can do some of that soon, too.

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