Bladder Cancer Connections via the Worldwide Web
When I was diagnosed over 4 years ago at age 40, I had no clue that bladder cancer was even a thing. I was floored. Immediately I began seeking out information, organizations and connections with others.
Advantages and disadvantages of technology
The advantage of all the technology we currently have is that all of these things are now at our fingertips. The disadvantage of that is that sometimes you are either lead down the wrong path and acquire misinformation or you are lead down a rabbit hole of all the worst-case scenarios. You have to quickly learn what the reliable resources are and where the positive connections lie.
Making connections in online space
Since my diagnosis, I have become fairly active on social media in regards to bladder cancer and ostomies. Through the wonder of the worldwide web, I have had the opportunity to make connections with individuals and organizations around the world. I have also had the opportunity to share valid information as well as my personal story.
Questions from those newly diagnosed with bladder cancer
Occasionally, I receive direct messages from newly diagnosed individuals from around the world. People who are panicked about their diagnosis and have no idea what to expect or what their life will look like post-treatment. Many have no clue where to find adequate resources and/or there are no groups in their area to connect with.
Bladder cancer experiences vary around the world
Sometimes it is hard to answer their specific questions as treatment approaches around the world vary greatly and the options available to them may vary from that even. I am often reminded of how fortunate I am to live where I do as I did not have the need to travel a long distance to be treated. Both of my specialists and the hospital I had my procedure at are just minutes from my home. We also have a plethora of organizations and support groups available either in person or online. This is not the case for everyone.
Connecting others with the urostomy information
I recently received a message on one of my social media platforms from a woman in a small Russian town. She has been recently diagnosed. Unable to find another person in Russia that had a urostomy that she could talk to and ask questions, she turned to social media. Somehow, she found me. Whether it's by grace or sheer luck, I saw the message shortly after she sent it. Having been in the bladder cancer and ostomy communities as long as I have, I knew what kind of information to look for and I was able to share 5 websites with her to at least get her pointed in the right direction to get more information relevant to where she lived. Hopefully, she will also get connected to support groups or individuals who can give her some moral support.
Providing support during the good times
Many people frequent forums and support groups when they are in distress, but I think we all must remember that it is just as important and valuable to be active in our communities even in the good times. That is how you pay it forward. You will get just as much from sharing your story or helping another as you did when someone did those things with you.
Bladder cancer is not uncommon
According to the World Cancer Research Fund (WCRF) website, in 2018 there were 550,000 (yes, thousand) NEW cases of bladder cancer worldwide. Worldwide, bladder cancer is the 10th most common cancer. Yet, no one is talking about bladder cancer.
Despite staggering numbers, virtually no funding is allocated to bladder cancer research. Is anyone else wondering how that is possible?!
I refuse to be silent
I can tell you one reason is that the people who came before me have been silent and have not shared their stories. I refuse to be silent.
Since diagnosis, I have shouted my diagnosis from the rooftops. I have no shame. No one ASKS to have cancer. None of us are at fault. I will share my story until I no longer have breath. I sincerely hope each of you does the same.
How well does your healthcare provider understand your bladder cancer?