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[Support] networks can help you regain control of some aspects of your life....

What saved me was the close friendships I formed with five other teens on treatment....

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.

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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 fundraising events.

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 achievement.

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 childhood cancer.

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 healing.

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 people.

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.

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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.

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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 healthcare provider.

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