[Support] networks can help you regain control of some aspects of your
What saved me was the close friendships I formed with five other teens
Many survivors' need for support from fellow survivors changes over time.
Networking for Support
The following excerpt is taken from Chapter 2 of
Childhood Cancer Survivors: A Practical Guide to Your Future
by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
You don't feel alone when you have close relationships with people who have
walked the same path. Exchanging information, experiences, and thoughts
with others who have similar life experiences forges close ties. Even
survivors with close families and friendships often seek out peer support.
Networks can help you regain control of some aspects of your life as well
as vent feelings that are shared by members of the group. The sense of
community can help dispel the isolation felt by too many survivors as well
as clear the way for personal healing.
Our children's hospital organized a get-together for all the families of
children with brain tumors. It was so nice to learn that the things we
thought only happened to us were issues that all the other families were
struggling to cope with. For instance, problems with reading and writing
were widespread, and I just was not aware of that. I felt so much less
alone. It opened another door for us.
After I survived cancer in my teens, I became an outsider. I looked at life
in a completely different way. I just couldn't relate to other teenagers. I
felt like I had the mind of an 85-year-old woman. What saved me was the
close friendships I formed with five other teens on treatment at the same
time as I was. I'm the oldest now at 21 ( five years off treatment), and
the youngest is 17. We all survived, and we talk all the time. They have
been my biggest support. Even our parents are close.
Networking for support can occur in many ways: one-on-one discussion
with a fellow survivor, attending survivor conferences, joining a survivor
support group, organizing or attending educational workshops, or
participating in an Internet discussion group.
I had neuroblastoma when I was 9 months old, and leukemia when I was 3. In
my teens, I just wanted to move on. In my 20s, I concentrated on career and
relationships. In my 30s, I wanted to give back. So a friend who is a
medulloblastoma survivor and I started a group called Rebounders for adult
survivors of childhood cancer. We connected a group of survivors from the
'60s and '70s generation. Some of the group's members had pretty much had
their social abilities wiped out. So we all gathered and talked for an
entire weekend. We have an active group, and some people's social abilities
have increased tenfold. I also sit on several committees to advocate for
survivor needs. We distribute brochures and a newsletter. We organize
I personally hate the politics, but my friend is the goal setter. His motto
is, "Nothing can't be done." We are now working to create a
long-term follow-up package for our province. We hope to have a clinic, a
book on how to take care of your healthcare needs, and a traveling medical
passport. My work for survivors has been a very satisfying
Some survivors and family members feel so strongly about the lack of
support in their lives that they volunteer with an existing group or
organize their own group to address the needs of those treated for
After Paige was diagnosed at 6 months old with retinoblastoma, it was
2-and-a-half years before we met any other cancer families. Her first
treatment was surgery, then we went home. We were a family that fell
through the cracks. It was a terrible loss. That's why I volunteer so much
with ChildCan, because I am concerned that no one else fall through the
cracks. You need to meet other families to feel normal. It lifts a weight
right off your shoulders.
In 1985, Susan Nessim and Lisa Jamison founded a group for cancer
survivors called Cancervive to focus on the challenges of life after cancer
treatment. In Susan Nessim's book Cancervive, she writes:
Survivors need a place to unburden themselves of fear, anger, and sadness .
. . . In my view, that's the significance of all support groups. They give
us a sense of security, a safe haven, a collective atmosphere of caring and
support. Shared experience is the glue that forms an instant bond between
members--a sort of camaraderie of the campfire. In that sense, a support
group can provide the kind of psychological salve that promotes healing. It
is also an effective antidote to the isolation, the sense of aloneness,
that is so much a part of cancer's terrain.
But Susan Nessim didn't just feel a sense of accomplishment from helping
others. She found that starting her organization helped her own
To my surprise, Cancervive was having a powerful effect on me as well. I
had been so busy with the nuts and bolts of running a nonprofit
organization that I was slow to realize how my involvement in it was
changing my life. I felt as if I had finally reached a point where I could
be who I really was and share my experience in a positive way with other
A burgeoning type of support system for survivors is peer groups on the
Internet. Any time of the day or night, support is just a keystroke away.
The Internet is a great leveler--it doesn't matter what you look like or
what disabilities you have--you will be accepted for your thoughts and
words. Thousands of survivors and their family members use this system to
link up with others traveling the same emotional path, but who live around
the world. Discussing their concerns, fears, and triumphs helps them make
sense of what has happened to them, heal, and move on with their lives.
I had both eyes removed in 1956 to treat my bilateral retinoblastoma. Until
a year ago, I didn't know any other survivors. I was a little ignorant
about it. I happened to be on an Internet list for the National Alliance of
Blind Students and a young lady said, "Hey, I've got retinoblastoma
and am going to start a list. If you are interested, join me." So I
did. Ever since I got on the list, I've learned so much. I'm very glad. Now
I am cognizant of the possible secondary effects, and I am so thankful that
I've finally run into people that make the whole thing real.
The BMT-TALK discussion list has been my main life saver. When you get home
there is nobody else to talk to who understands. I felt very isolated until
we found the list on the Internet. It does have a downside--you can't get
away from the BMT experience and you hear about all the relapses. But the
upside is that whenever anything happens or I have a question, I post a
question and one or more people have had that experience. When she had the
kidney problems, there were people who knew all about it. When she needed
hormones, there were lots of people who had already been through that. It
helps to keep me from panicking to hear that those things are common.
PED-ONC is a great place to share what it's like to live with the daily
struggles of being off treatment. My friends and family don't understand
that I worry about relapse ten times a day or more. They say things like
"You can't think like that." As if thinking it will make it come
true! But the people on PED-ONC are going through exactly the same thing.
It is a good place to share and compare where you are at and realize that
you are normal.
Many survivors' need for support from fellow survivors changes over
time. They work through their emotions, give back to the community, and
sense the need to move on.
I still know a couple of kids who had treatment at the same time that I
did. I used to go to support group meetings. I'm off it now as I get ready
to start high school. I have mixed feelings about these meetings, as
sometimes they are helpful, but at other times it gets kind of annoying to
go there and reflect on the past. Every time I had to tell my story, and
I'm tired of telling my story. I want to solve problems by taking action
rather than talking about them.
Any time medical information is shared in support groups--in person or
online--remember that it could be accurate or totally wrong. Before acting
on medical information obtained from a lay person, check with your