Accept. Adapt. Advocate.
Many organizations and companies use this alliteration. But I remember hunting around for a cancer shirt on Etsy and I stumbled across a seller with this phrase on a shirt. As soon as I read it, I knew that THIS exactly describes my experience with bladder cancer. I’ve never felt a connection to the idea of being a cancer warrior or fighter, or that I’m brave or strong. But I feel deeply about being an Adolescent and Young Adult (AYA) Cancer Advocate. I’ve recently begun using the “Accept Adapt Advocate” motto when telling my story and it's been a way to help explain the journey which has brought me to my role of “advocate”.
Accepting my diagnosis and the reality of my situation was (and sometimes still is) the hardest chapter of my story. I’ve talked before about how it felt being told I had cancer and sharing that news with my family. After the initial shock and going through the months of procedures, recovery, and treatment, I finally one day had to face my reality. I have bladder cancer and this will be something I manage for the rest of my life. I also have an ostomy that is permanent and something I need to make peace with. This was an extremely difficult time. I cried, threw a few things, and sought therapy to help myself come to grips with my new life. When the breakthrough happened and I finally accepted my diagnosis and ostomy, it was like a weight lifted and I was able to finally move forward.
I knew that I would need to make adaptations regarding living with my ostomy, the funniest actually being that I completely changed the style of underwear I like to wear. I didn’t realize that there would be more to take into account than just scheduling bag changes and keeping spare supplies/clothes on hand. I needed to also make accommodations for doctor’s appointments, treatment days, post-treatment days, and just being a person with cancer. It has taken careful planning and a level of organization I never had before, but I finally feel like I’ve adapted my cancer life to my “real life” rather than molding everything around my cancer. Once I got into a groove with my new normal, I felt called to do more.
Not everyone will feel the need to do more than just survive and live with their cancer and that is absolutely ok. I hate that there is often an expectation that cancer fighters and survivors need to suddenly become inspirational speakers. I very quickly felt an urge to do something with my situation. Maybe it was facing my own mortality or just anger at how my specific story had unfolded, but I had a deep sense of need to make something out of a crap hand I had been dealt. So, I started sharing my story. I reached out to other cancer patients and found myself a community.
Raising my voice louder
Unfortunately, no one in this community looked like me, so I started talking a little louder. If no one else was going to be a voice for the young women fighting an old man’s disease, then it was going to have to be me. Any opportunity I have to share what I have been through and the things I learned, I take it. This has led to speaking engagements, sitting on advisory panels, and slowly finding other young men and women going through the same thing as me. I have found fulfillment and purpose in being an advocate. It has been a way to take control of a situation I oftentimes have zero control of.
How well does your healthcare provider understand your bladder cancer?