As I reflect back on my life since my cancer diagnosis, I can easily think of it in three parts…1st part – muddling through the world of cancer before I joined Gilda’s Club Madison, 2nd part – being a Gilda’s Club member during treatment and recovery, 3rd part – post-treatment and recovery. Luckily for me, the shortest of these time periods was the pre-Gilda’s Club time.
It is very scary receiving a cancer diagnosis. There are so many unknowns as you learn about the disease and the treatment that can be done to hopefully get rid of the disease. When I was diagnosed, I didn’t have any friends or family members with cancer experience that I could talk to. My grandfather and aunt had both died years ago from their cancers, but they also hadn’t talked about it much.
Do you know the image of being alone in a crowd – with one person standing still in the middle, but surrounded by other people moving around them? I had a lot of support, GREAT support, from my husband, parents, other family and friends, but was without someone to talk to who had been there, knew how I was feeling, was afraid of the same things I was afraid of and could offer advice or information on my cancer. My oncologist would always ask if I had questions, but I never did during this time since I didn’t know enough to even formulate questions, other than will I lose my hair?
When I became a member of Gilda’s Club, I joined a weekly wellness group the same week I started chemotherapy. It was in that wellness group that I met others who had been there and who got it. Some had surgeries, some had chemo, and others had radiation, but we all had one main thing in common – we had been diagnosed with cancer and needed a place to talk to others with cancer. There were discussions on fears, the treatments, and the side effects of those treatments. We also had discussions about some of the crazy things people would say to us (drinking only alkaline water, not ever using any plastic, taking baking soda, eating kale and other “cures” by such & such practitioner that are so crazy they seemed like put a tea cozy on your head and cluck like a chicken while hopping on your left foot 5 times then clapping 3 times). We shared ideas on how to handle the side effects and asked each other for opinions on treatments options or how to deal with employers or unsupportive family members and friends. One of the most important things I learned was how to advocate for myself. This was by learning about how to research my cancer and treatment options, which sources were reliable sources, and then how to formulate and ask the questions.
The wellness groups aren’t the only thing that I participated in during my treatment/recovery. There are educations meetings where I could learn about different aspects of cancer, treatments, side effects, medications and procedures. I also participated in some yoga classes and spent time relaxing while working on crafts in the craft room or just hanging out.
Everything that I learned while in treatment or recovery during treatment means so much to me that when I was ready, I became a volunteer for Gilda’s Club. There are many ways to volunteer…I have taught classes in the craft room, helped to set up for events at the clubhouse, been a photographer for events, sold raffle tickets at fundraising events, and do outreach in the community, like tables at health fairs and expos, or businesses.
I have also gone a step further by becoming an ambassador for Gilda’s Club. This involves speaking in the community about Gilda’s Club, talking to the media at events, being on a radio show and being part of Gilda’s Club’s public service announcement.
I want to share something with you about my pre-cancer life. I was very shy, so much so that in school I would turn red when called on and would be in tears during speeches. I also didn’t want to go through with my high school graduation because I didn’t want to be the center of attention when walking across the stage.
Gilda’s Club helped me to overcome my shyness. The wellness group was so welcoming that in my first meeting, I was able to share my questions and fears about starting chemotherapy with a group of strangers. When I became an ambassador, we had a training on how to tell our story. The training has helped me to organize my thoughts to get my message across, both when telling my story involving Gilda’s, but also in other parts of my life. I have even contacted a local news station when some misinformation was posted online. The result was that I ended up being interviewed as their cancer survivor who made some tough decisions about my treatment for their story on the 6:00 broadcast.
I have also met some amazing people throughout my involvement with Gilda’s Club. The strength that people have as they live with metastatic cancer and face their death/mortality is inspiring. They have reminded me that it is important to live today because tomorrow is not a guarantee.