Going Public with My Cancer

I thought long and hard about what I wanted to do with my cancer story after I was diagnosed. I remember laying in my hospital bed at Emory a day or two before my surgery searching google for anyone with a blog who had bladder cancer or who had a urostomy. I desperately wanted to see an example of someone living with this disease and what their day-to-day looked like. Other than a handful of Facebook support groups, I couldn’t find anyone showing their solo journey.

Other women had the same questions as I did

As I joined the support groups, I saw there was a large number of women under 40 with this disease asking the same questions I was curious about. Fashion, lifestyle, working, and just generally searching for examples of “life with bladder cancer”. I decided then and there I would make my story public. I opened up Instagram and made my first post about my diagnosis. From that point forward, I started posting photos and long captions about my journey. I showed very raw and, at times, graphic hospital photos because I wanted people to see what cancer really looked like.

Sharing the good, bad, and ugly of bladder cancer

I admit that before my diagnosis, I primarily viewed a cancer patient as a mid 40s woman with a scarf on her head receiving chemo. I didn’t have a perception of what the actual cancer journey looked like. Shedding light on the ugly was very important to me. As I shared my surgery, healing, hospital readmits, photos of my stoma, good days and bad days, I saw more and more people following me.

Starting "No Bladder Don't Matter"

The messages and comments began pouring in through Instagram and from people in the support groups. In 3 short months, I had hundreds of eyes on me. As I started maintenance treatment and was looking at a return to normal life, I began wondering what I should do next. On December 4th, 2019 I created my public-facing Facebook page, No Bladder Don’t Matter. This came from a desire to redirect the messages I was receiving from my personal Facebook page and to not inundate my friends and family with cancer posts every day. The Facebook page got a following, and I needed to look at yet another step forward. On January 1st, 2020 I rang in the new year with my website. It was time to be that girl I had been searching for from my hospital bed. As someone so outside the normal range for a bladder cancer diagnosis, I had an opportunity to stand on my soapbox and shout my story. So, I started shouting.

My real experience with bladder cancer and a stoma

Speaking to other AYA (Adolescent & Young Adult) Cancer patients, there is a concern that some people who go very public with their cancer journey turn into the dreaded Instagram model or social media influencer. They make their cancer into something glamorous and try to gain “likes”. Finding a balance of sharing and staying “real” is something I keep in mind with every photo, caption, and blog I write.

Continuing to share my story

Since throwing my story out into the world, I have had the opportunity to talk to people all over the world battling bladder cancer. It is both humbling and intimidating at times to know there are strangers reading what I write. Even here!

As I near the one year anniversary of my diagnosis and radical cystectomy, I am looking forward to continuing to share my story. I can only hope my voice, along with everyone else taking the time to share their stories will help to make one less person feel the loneliness I did.