Susan Leigh’s story about how she turned her cancer experience into an advocacy action plan.
Many of us who accidentally landed in the “kingdom of cancer” often move into advocacy out of anger, fear, outrage or total helplessness. While we may never have expressed such hostile or futile emotions before, a diagnosis of cancer can catapult even the most humble and submissive into action.
I was a major introvert before cancer, but I soon found myself on the road to advocacy. After a diagnosis and successful treatment for Hodgkin’s disease in 1972, I either felt thankful to be alive or fearful of recurrence. While I viewed the world with a new sense of wonderment and joy, I also found that my sense of “future” was forever changed. Each moment seemed both precious and precarious, and I explored my new post-cancer world one step at a time.
I discovered that not everyone related to my anxiety and fear of recurrence, or my need to stay involved in the world of cancer. As a matter of fact, my need for ongoing support was so great that when I finally felt physically and emotionally ready to return to my chosen profession of nursing, I became an oncology nurse and worked with my oncologist!
Working in oncology obviously had its positives and negatives. A positive was my proximity to experts and a continual flow of new information. A negative was some co-workers who misunderstood my need to work in oncology, some even labeling me an over-emotional hypochondriac. Even I wondered if cancer had left me a little crazy.
It was a major turning point for me emotionally when I joined other advocates in Albuquerque, N.M., in 1986 to found the National Coalition for Cancer Survivorship (NCCS). These people understood, and they helped me find a voice and passion that I didn’t know I had.
As part of a group that shared a vision and mission, I was invited to speak about survivorship; then I started to write about cancer for both professional and consumer publications. Soon I was on committees as a patient advocate. What I had to say seemed to matter, and it surprised me as much as anyone.
Being an advocate means you have decided to stand for something or someone. It’s something that can happen accidentally; something that sneaks up on you when you don’t expect it; or something you plan and organize for. From someone who has ridden the advocacy bandwagon for a number of years, here are a few pointers.
There are many different types of advocacy, so make sure that you enjoy what you are doing. Advocacy could be:
> Using your special skills as a volunteer at your clinic, hospital or cancer organization.
> Mentoring other survivors or helping them navigate the complicated cancer system. It is probably best to work with your healthcare team or a community-based support organization.
> Teaching others about maneuvering through cancer, including patients and survivors, healthcare providers, medical students and community organizations.
> Working on community events by volunteering time, raising funds or offering specific skills such as computer work.
> Advocating for change in public policy, such as better access to cancer care locally and nationally. Look at websites for national cancer organizations to see what legislation they are supporting.
> Representing the consumer as a patient advocate on research committees. This could be at your local cancer center or at the National Cancer Institute in Bethesda, Md.
You may also want to explore your motivation for getting involved. Many of us simply want to help others have an easier time getting through cancer. We want to be their guides. Others focus on social justice and more equal opportunities for all to access high-quality cancer care. Yet others, including me, really want to make sense out of our suffering and to have these difficult experiences mean something. I want to — need to — “give back.”
While all these motivations are honorable, good advocates must be able to look beyond their own personal experiences and understand the complexities of the cancer experience. In this way, our past experiences and current efforts really will make a difference.
Here are some resources:
“Facing Forward Series: Ways You Can Make a Difference in Cancer” at http://cissue.cure.nci.nih.gov/ncipubs/
NCCS at www.canceradvocacy.org offers:
• Self-Advocacy: A Cancer Survivor’s Handbook
• Cancer Advocacy Now! (a Web-based training program)
• “Survivors As Advocates” in the book A Cancer Survivor’s Almanac: Charting Your Journey (Wiley & Sons, 2004)