The ICCCPO Conference in Vancouver: A Survivor's Perspective
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 ICCFís activities to
I didnít 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, ďa
good speaker is a good listener.Ē And boy, he was right. Not only had I got a
good impression by then, but also, Iíve 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, itís kind of
regretful that I didnít 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 survivorsí 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. Itís 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 havenít 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 survivorsí 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 didnít
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
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 Iíve got the knowledge, the experience and
the ambition, I finally can do some of that soon, too.