02/09/2021 By Liz Hiles, Bladder Cancer Warrior, Diagnosed August 2016
When I was diagnosed with bladder cancer in August 2016, I had never heard of bladder cancer before. Imagine my shock that it was the 6th most common cancer in the US in 2015. How can a disease like this be #6 and no one is talking about it?!?! NO ONE IS TALKING ABOUT IT!!
I continued reading.
More dissatisfying news.
Not only was no one talking about bladder cancer, but there were huge discrepancies in how patients experience initial symptoms, having medical professionals listen to the symptoms and running the appropriate testing, and receiving the initial diagnosis of bladder cancer. HUGE DISCREPANCIES.
I very quickly decided that there was no way that I could be silent about my diagnosis. I was undoubtedly going to have to share my story.
After I contacted a few select people in my life and had one-on-one conversations, I wrote a long Facebook post and started sharing my status across social media. I contacted a cancer research organization and organized an online fundraiser. I planned a social media campaign for my surgery date and asked all my friends to wear purple, blue, and marigold yellow on the day of my surgery and post on social media and tag me. I went to work.
For me, it was a very easy, natural decision to share my story and advocate for bladder cancer, ostomies, and the general public. I have been doing it as long as I can remember. This felt different though. This was a game-changer.
My virtual fundraiser raised quite a bit for the American Association for Cancer Research (AACR). I raised quite a bit of awareness leading up to my radical cystectomy with the help of my family, friends, and coworkers. Even strangers and online acquaintances I had never met helped share the information and reposted things I had posted. In between my procedure and chemo, I did submit one small piece to Fight Like A Girl Club from my iPhone 5s with 1 solitary picture. It was published on November 16th.
I started turning my focus to kicking cancer’s a$$. I experienced several complications from my surgery and chemo was one of the harshest cocktails they can give. The combination rocked me to my core and dropped me to the floor – literally and physically. Once I was given the all-clear and was on the road to recovery, I started sharing my voice again.
After being off work and fighting for my life for 8 months, I started small and started my blog, yoURostomy. I got some decent traffic but didn’t have the time or energy to regularly post. A website had launched, BladderCancer.net and I had the opportunity to share through their editorial staff occasionally, but nothing major.
Eventually, I found my way to support meetings. The local cancer support meetings were much more suited to older, retired folks or people with families, not single, childfree people who had full careers and workloads. There were (and are) no local bladder cancer-specific support groups in my area. I ended up going to my local ostomy support group and quickly found a rhythm with them along with open doors and arms.
Things started snowballing, but I knew I was on the right track. In the last year, doors and windows started flying open and I am extremely grateful for all the opportunities. I have had so many opportunities that I shifted my focus to sharing my voice full-time. I know that I am doing the right thing. I know that I am helping people.
So many people that I talk to think that sharing your voice and doing advocacy means that you are strictly writing politicians and marching on Washington. That is simply not the case!
There are so many avenues to share your voice and your voice matters! There are others JUST LIKE YOU who are out there thinking the same things: I’m all alone in this. My voice doesn’t matter. No one wants to hear my story. No one else can relate to what I’ve been through. THIS IS NOT TRUE! This is that negative self-talk that we are erroneously led to believe.
It just takes one person to get the ball rolling. One person who says to themselves, the hell with it. One person to be bold and brave enough to put their thoughts out into the world in some way, shape, or form to reach anyone else. If you share your story and help one person realize that they are not alone in their experience, pain, struggles, then you have made it all worth it.
You don’t have to reach the masses with your experience, you just have to reach one person.
Will you choose to let your voice be heard?
I did and I do. It has been beyond worth it. I challenge you to give it a try.
Editor’s Note: Liz was a long-time community member before officially joining the Gryt Health Team in August 2021. She is a bladder cancer survivor and urostomate who was advocating long before she had any healthcare issues to advocate for. You can learn more about Liz and her experiences in her team bio.
