Childhood Cancer Survivors
Networking For Support
Peer support networks can help survivors regain control of some aspects of their lives, learn how others have coped with similar problems, and share feelings. Exchanging information, experiences, and thoughts with others who have similar life experiences may help forge close ties. Even survivors with close families and friendships often seek out peer support.
The sense of community can help dispel the isolation felt by too many survivors. Support can profoundly affect the way you view yourself and how you manage your life after cancer.
Networking for support can occur in many ways: talking with fellow survivors, attending survivor conferences and camps, joining a survivor support group, organizing or attending educational workshops, or participating in online discussion or support groups. Some survivors and family members have reported feeling 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.
The need many survivors have for support from fellow survivors’ changes over time. Some may embrace emotions head on, consider giving back to the community, and perhaps sense the need to move on.
As a child, I attended Camp Can Do (a camp for kids with cancer) for nine years, and have been a staff member for five years. I met a lot of campers who were actively going through treatment, and not all of these campers made it. When I was younger, these campers were my friends. Nowadays, these are the campers that I am responsible for. It is always difficult to lose a friend or a camper you have gotten to know. I have found it to be very important to lean on your support system when this happens. There are plenty of people, including campers, staff members, friends, and family, who are dealing with these same losses. Talking with others and keeping their memory alive is the most important thing. It has allowed me to work through my grief.
I learned just how deeply people can care for one another. We had and still have so much support from the people around us: family, friends, neighbors, the towns where she grew up, our church, and more. The way that people showed up for us shaped me for the better. It also taught me how to be there and support others who are going through a hard time.
We met so many great families at Ronald McDonald House and at the hospitals who were going through the exact same thing we were. We would talk, ask questions, compare experiences, and look forward to seeing each other at our next visits. We still keep in touch with some of these connections!
My family is my biggest support network. I didn’t have many survivor friends growing up, but made a friend when I got to college who was also an ALL survivor. It was one of the first times in my life I met someone like me, and we spent a lot of time discussing our cancer journeys. She had gone to a survivorship camp and had a lot more friends to talk about everything with. Now that I am working at a childhood cancer foundation, I’ve met a lot more people with similar experiences. It is so important to connect with other survivors.
I did try therapy with a few people! The therapist I really liked was only offered through the college I attended, so after graduation I could no longer use that resource. I tried a few others, but they just did not fit. I felt like they were trying to fix me, but my experience is not just something you can fix. My friends and family are extremely supportive and try so hard to understand, but they can’t. Knowing they still try is comforting, though. I have a friend I met at the children’s hospital through treatment that I talk to almost every week. That friendship has been a huge blessing for us both.
Online support groups
Online support groups often offer a unique type of support for survivors, their parents, and family members. Any time of the day, support is just a keystroke away on a multitude of social media sites. There are multiple moderated groups and spaces available where survivors and parents can connect with others who may be enduring similar challenges. Thousands of survivors and their family members use these mechanisms to connect with others around the world traveling a similar emotional path. Discussing concerns, fears, and triumphs may help make sense of what has happened to them, heal, and move on with their lives. Support groups for parents are widely used.
A word of caution: if medical information is shared in support groups—in person or online—survivors and their caregivers should question the accuracy. Before acting on medical information obtained from a layperson, individuals should check with their healthcare provider.
I have felt it is pretty easy to network with other childhood cancer survivors. There are Facebook groups and online forums that are easily accessible. Additionally, the network I have from knowing people through treatment has been extraordinarily steady, and the people I have forged a bond with are some of my best friends today.
Staying involved in things like camps for kids with cancer or other events where I can help as a survivor has led me to some incredible people who have made an impact on my life. From my experience, this brotherhood/sisterhood of survivors is a strong one, and the support system is truly second to none.
Table of Contents
All Guides- Acknowledgements
- Contributors
- Foreword
- Preface
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating The System
- 5. Staying Healthy
- 6. Genetic Testing And Childhood Cancer
- 7. Diseases
- 8. Fatigue
- 9. Brain And Nerves
- 10. Hormone-Producing Glands
- 11. Eyes And Ears
- 12. Head And Neck
- 13. Heart And Blood Vessels
- 14. Lungs
- 15. Kidneys, Bladder, And Genitals
- 16. Liver, Stomach, And Intestines
- 17. Immune System
- 18. Muscles And Bones
- 19. Skin, Breasts, And Hair
- 20. Subsequent Malignancies
- About The Editors
