For The Next Me
When I first started patient advocacy I was told I needed to find my "why." My reason for advocacy is what would make my work genuine and ensure others would connect with the words I wrote and the content I created. I thought I knew what my why was, but I had a hard time putting it into words and creating a focus.
Then one day a fellow cancer patient told me she shared her story "for the next me." And that has always resonated with me.
See yourself in my story
I've known that sharing my story wouldn't change what happened to me. My diagnosis story is what it is and I have to approach every test, procedure, scan, and infusion completely blind. I don't have anyone who has walked my exact road before that I can look to.
As much as sharing my story has been about finding community, it has evolved into helping the next young woman who is diagnosed with bladder cancer. I want to make it easier for the next me.
For the next young woman diagnosed with bladder cancer
I want to make sure the next woman in her twenties does not go almost a year before being diagnosed. If sharing how my symptoms were atypical and dismissed by doctors, maybe this will help the next woman recognize the warning signs and fight for appropriate care.
I also hope that medical professionals will read my diagnosis story and learn to look for bladder cancer in more than just older men. Awareness on both sides could quite literally save a life.
Don't fear the bag life
I want other patients facing a radical cystectomy to not be afraid of the bag life. All three urinary diversions are great options, but if you are presented with an ostomy as your only option, I want you to know it really isn't a big deal. I didn't know anyone with a urostomy, I didn't even know bladder removal was a thing!
I was lucky to have an incredible ostomy nurse to teach me the care part, but I didn't have anyone to show me how to actually live with an ostomy.
The few people I met were much older and not necessarily dressing in the latest fashions or doing the intense activities I wanted to reclaim. I hope other ostomates see me living a full and normal life and aren't afraid of having a bag.
Sure, the bladder isn't the sexiest
I want bladder cancer to have the same awareness, screening, funding, and support as other cancers. I get it, the bladder is not a sexy organ. "Save the bladders!" doesn't have the same ring as "save the tatas!"
I've known from a young age how to screen myself for breast cancer. I have grown up seeing huge support organizations for other cancers, but didn't know that abnormal bleeding in my urine could be something other than menstrual is not ok.
Bladder cancer can be screened for, found early, and maybe actually save your bladder from removal. Bladder cancer does not receive nearly the same level of funding as other cancers while being ranked as one of the most expensive for patients due to its aggressiveness and longevity.
For the next young woman
Putting a face to bladder cancer patients will hopefully put this disease in the spotlight and prevent someone else from ever experiencing what I have.
Preventing the next bladder cancer patient from going through what I've experienced is the reason why I joined multiple patient advisory boards, write articles, and launched my website.
I continue to share the good, the bad, and the crazy parts of living with bladder cancer. I hope the next me has it much better than I did.
Have you ever experienced caregiver burnout?