Apples & Oranges: Differences Between Bladder Cancer & Other Cancers
When I finally received my diagnosis, things with my treatment snowballed rapidly and it was not until after my treatment ended that I was able to even fathom getting involved in support groups and talking with others about what I experienced beyond Facebook groups. Support can be critical for anyone battling cancer and as a single, childfree person, I desired support beyond my circle of established acquaintances, friends, and family. As well-meaning as someone can be, if they haven't lived our experience, it is close to impossible for them to truly get it.
Going back to work after my treatments ended
I went back to work very quickly after my treatments ended after necessity. I really wanted to get back to life, but I needed time to recoup from everything. At the time, that was not an option. I would go to work and come home thoroughly exhausted. My weekends were more or less spent in bed. Too exhausted and fatigued to do anything else.
Trying to find support at a local cancer agency
When I was a bit stronger, I tried to go to some support groups at a local cancer agency since there were (and are) no bladder cancer-specific support meetings near me. To say I was disappointed with the experiences is a gross understatement.
The people at those meetings were mostly breast cancer survivors. Any cancer diagnosis is devastating and traumatic, but their experiences and mine were extremely different and they were not at all relatable to what I experienced. Quite simply: they didn't get it. Many didn't even try.
I was disheartened
I went away disheartened and eventually quit attending most of the meetings and events at that organization. In the meanwhile, I turned to online forums for support. They were better but not great. There truly is no replacement for in-person meetings!
Feeling frustrated with Facebook groups
A few months passed and I was underwhelmed with participation in many of the online forums, mostly on Facebook. Groups being flooded with woe-is-me posts and irrelevant memes. People asking similar questions in back to back posts and not paying attention to what has already been discussed in the groups. I was continuously shocked at how many people were grossly uninformed about their own diagnoses, treatments, and bodies.
Looking into a local ostomy group
I vaguely remembered my wound care nurse telling me about a local ostomy group that regularly met in my area. I looked through the things I'd brought home from the hospital, but couldn't find the items from her. I called and talked to her and then looked the group up online. They had an electronic mailing list with newsletters so I signed up. I decided to go to one of their social events as my first meeting.
Finding my people
When I went, I was warmly welcomed and asked about my journey. Everyone went around and briefly shared why they were ostomates throughout the evening. Everyone ordered meals and beverages and talked. We all communed. It was bliss to me. There have been very few events since that which I've missed.
Bladder cancer is a unique experience
Despite everyone having different journeys, I found the ostomy circles more understanding and welcoming than I have many of the cancer circles. Most other cancers are just so different from what bladder cancer patients experience. It is important for people to find others who get what they have been through. Most other cancers can get through treatment and get to a major milestone and move onto not thinking about their cancer on a daily basis. Bladder cancer patients, by and large, do not get that luxury.
We can never forget our blader cancer
If a bladder cancer patient is lucky, they keep their bladder intact and go through treatments. They can go into remission, but most likely will need regular surveillance for the remainder of their life. Others are lucky to be alive, but have their bladders removed. Whether you have an internal or external diversion, you do not have the luxury to "forget" that you have or had cancer. There are permanent biological and anatomical changes that have happened and if you dare to "forget" you can end up with one heck of a mess!
You can't compare cancers
Bladder cancer patients experience diagnosis, treatment, and remission differently than most other cancers. It is a unique experience. Just like it is impossible to compare apples to oranges, you cannot compare bladder cancer to other cancers.
How long did it take to get diagnosed after your first symptom(s) appeared?