Starting an In-Person Bladder Cancer Support Group

I was shocked when I was first diagnosed with bladder cancer in 2014, as are many others. Online sites were my salvation and certainly showed me that though this form of cancer was only quietly discussed, I was clearly not alone with my diagnosis.

I found a site online, poured out my heart about how frightened I was, and wondered what lay ahead for me.

"Meeting" Ann

One of the people who reached out was Ann, who lived less than an hour away. We emailed and chatted on the phone often. When I was preparing for my cystectomy and ileal conduit surgery, she met up with me to quell my fears and to show me that she really was upright, doing great, and clearly very active. 

It made a difference to have "met" her online and then to also speak to her in person. I will never forget her kindness and generosity with her time when I needed it most. We kept in contact, but unfortunately, her cancer spread, and she passed away a few years ago. I often wish Ann was still here and I could show her how well I am doing and thank her yet again.

The value of personal connections

When I was early in my diagnosis and through the years following, I found that small in-person meetings were a valuable addition to online groups, especially for those of us having major surgeries such as radical cystectomies.

I know from my personal experiences that there are levels of comfort that we achieve in relationships and that, for some, the in-person support provided during times like this is invaluable.

One of the first feelings we have after the shock of the diagnosis is the feeling of being alone. Not only do we have the big "C" disease, but one that many of us had probably never heard of before. That tends to make it more difficult to be comfortable with an unknown form of a disease that is not discussed. 

We are not "saving the tatas" or discussing another way to have a colonoscopy; we are discussing urinary issues that people don't discuss.

Online vs in-person

I know that we can connect with a great deal more people online with sites like BladderCancer.net and also with support groups online. In-person support groups are a great way to supplement online groups and show people there are others in their own community going through the same or similar situations.

One of the values is to discuss specific doctors, surgeons, treatments, and hospital facilities that only those in the same location may have access to and awareness of. I have met with families, shared stories in person, and provided samples and supplies whether someone is out suddenly or they wish to try an item. Over the most recent years, I have only used online support but never forgot the value of additional support in person.

I want a bladder cancer support group in my community!

I decided it was time to have a bladder cancer support group in my area, and I was on a mission to make it happen. I had thought about this for a long time, and it was time for me to walk the talk and get started. I intended to make progress with this mission but found to my disappointment, that the 2 cancer society locations near me were now closed. Time to investigate.

I called the 800 number and learned services had gone remote during COVID. Unfortunately, they did not have the ability to help with in-person support groups any longer. To say that I was disappointed and honestly shocked was an understatement. I have been an advocate for a long time and know the tremendous value of meeting and speaking with people in person.

Don't get me wrong - online groups connect us with people from around the world who provide expertise from more avenues than we could hope to have available to us. Most important is that online is available for people to use 24/7 from anywhere. I believe there are also times when meeting people in person can supplement the online sites.

Where to start

I did some more research and found a local place called The Victory Center, with 2 locations near Toledo and a variety of programs for cancer survivors. I was excited about this great find and reached out to them by email immediately. 

Their response was quick, but I was told they had a general cancer support group and a caregiver group but only a few specific small support groups. Unfortunately, bladder cancer was not one of those. 

Well, that did not deter me. We had more communication, and I was told that if I wanted to start a bladder cancer-only support group, they would help put the word out through their emails and social media. That sounded promising, but the rest was up to me.

Securing a location

My next step was finding a location for this group. One of the best things about my current home is that it is directly across the street from the city library. I go there at least a few times a week, and it is one of my favorite places.

I found that they have rooms available for gatherings, and they are free – my favorite price! I was even shown how to schedule the use of a room online. Things could not be going better.

Making it happen!

I reached out to the Victory Center again, and they agreed to get the word out that I was starting a bladder cancer support group and how to reach me. As this happened a couple of days ago, I have not yet heard if they have promoted this, but I hope to hear from those who can use the in-person support locally.

I know that personally supplementing online groups and resources with in-person support can have some real value. I hope that I can report back that this venture was a success.

If you or someone you know would be interested in getting connected with this Toledo, Ohio area bladder cancer support group, please reach out to contact@BladderCancer.net to get connected to Linda!