Speaking at the Bladder Cancer Retreat
Back in September, I had the absolute honor of speaking at the 2021 North Carolina Bladder Cancer Retreat. It was incredibly exciting, nerve-wracking, and it remains one of the most humbling experiences of my patient advocacy journey so far.
Making it to the bladder cancer retreat
When I was diagnosed in 2019, one of the organizers reached out to my mom and me, inviting us to that year's retreat. Sadly I was in the first stages of surgical recovery and was very ill. Then in 2020, the retreat had to be canceled due to COVID.
Initially, I hadn't planned on attending the 2021 retreat. It is one thing to write about and create content surrounding my own journey and advocacy, but the idea of physically being in a room with other people like me actually made me feel incredibly anxious. I made up my mind to forgo this year and attend the 2022 retreat.
But then Linda Urbanski invited me to speak and I just knew I had to go. No matter how busy I was or how nervous I knew I would be, her invite was my sign to go.
Preparing my bladder cancer presentation
So I began writing my version of a TEDTalk.
I was so focused on how to tell my story and advocacy message I didn't have time to get nervous about meeting other bladder cancer patients.
Very quickly the week of the retreat arrived and my presentation was complete. My husband and I made the quick 4-hour drive from Atlanta, Georgia to Maggie Valley, North Carolina.
A warm welcome
Immediately we both felt so welcomed and at ease. Instead of finding a room full of sad cancer patients, I found people of all ages and walks of life with the same brand of humor and can-do attitude about living with bladder cancer.
There is something so refreshing about being around people who "get it", you don't have to explain the weird jargon, what an ostomy is and we all had walked a very similar road in our journeys.
But the conversation didn't revolve just around cancer. We talked about our pets, our hobbies, our jobs, and our families. It was a fantastic weekend of camaraderie and feeling like I had found an extended family.
Support and connection
My husband even benefitted from speaking to other husbands who were going through this bladder cancer experience. He made friends and was able to offer up tips and tricks he had learned. I was incredibly proud to know he spoke up during the caregiver break-out session and provided our positive perspective on marriage mixed with bladder cancer.
We were both nervous about being the youngest couple at the retreat, and to be honest, most attendees were our parent's or even grandparents' ages. I was so happy to learn from everyone and we never felt out of place.
When it came time to speak I wasn't the least bit anxious. And giving my presentation wasn't the highlight of the weekend for me at all. I never got tired of hearing "hey you're that no bladder girl!" every time we met someone new. Or finding out that people following along with my journey had been inspired or learned something useful.
An unforgettable experience
If you have the teeniest bit of interest in attending next year's retreat I would not hesitate in reaching out to Linda and getting all the details. It is an unforgettable experience and you will leave the event feeling inspired and with about 40 new members of your family.
Connect with Linda and send a private message through her profile for more details on the annual bladder cancer retreat.
How long did it take for you to recieve a bladder cancer diagnosis?