Finding Your People: Bladder Cancer & Support System
At the time I was at my hospital, there was not one other soul being actively treated with bladder cancer. When I was told my diagnosis and what surgery I would be having, I did what any 20-something would do and got on Google. I stumbled across 2 groups on Facebook, and I’m not sure if those groups helped or made me more terrified, but it was the first place I saw other people going through what I was going through.
Gaining a sense of community
Then I found a little Instagram account called The Cancer Patient. That page has been the greatest sense of community and support for me. The person running the account posts the most relatable jokes, cartoons, and sarcastic commentary on life as a young adult with cancer. The account also covers a wide array of serious topics that are open for comments and questions every week. In that space, I have been able to talk about intimacy difficulties, facing my own mortality, and laugh with others who feel like human pincushions on more than one occasion.
Support from my close-knit family
I am very lucky that I have a tight-knit family. Everyone immediately packed up and camped out at my hospital with me, taking turns making sure I was never left alone. This allowed my husband to continue working and receive support as well since his family lives a full plane ride away. I don’t think this experience necessarily pulled all of us closer, but it was a loud reminder to hug the people you love whenever you can as you don’t know when it could be the last time. We had lost my grandmother and uncle only 2 months prior to my diagnosis, so we were all leaning heavily on each other to begin with.
Many people don't know what to say
With my friends, it was a mixed bag. Many people didn’t know what to say or what to do. I live so far away from home that I didn’t have friends who could pop by the hospital when I was there. At times, it felt very lonely, or like people were afraid to talk to me. I made the decision to reach out and preemptively answer the hard questions and let them know I was okay and what kind of support I wanted. I think cancer patients sometimes fall into the trap of thinking people will just know what to do and say and get hurt when people don’t react the way we think they should.
Empty offers and well wishes
On the other end of the spectrum, I did have the out-of-the-woodwork friends who offered empty, “You’re in my thoughts and prayers” or, “We should have lunch when you’re in town for treatment.” People I hadn’t talked to in years and didn’t even know I was married or what type of cancer I had. Again, I think cancer patients tend to get overly angry with these folks. They were a little grating to talk with, but honestly, politeness and saying “thanks” did more for me than being angry with them.
Find people to lean on
Whether you find friends virtually or through in-person support groups, I cannot even begin to express how important it is to FIND YOUR PEOPLE. Just have someone know what it’s like, who you can vent to and lean on so your family and friends don’t always have to be the dartboard for your emotions.
Have you talked to your doctor about navigating sex with bladder cancer?