Navigating Cancer Without Close Family

The Editorial Team at BladderCancer.net is highlighting people in the bladder cancer community. We talked to Liz who shares about finding support from friends, coworkers and support groups.

Editorial Team: Can you share about navigating appointments/surgery without support from immediate family members? Have you found support from other sources?
Liz: I am fiercely independent and although I really wanted to handle a lot of things on my own and in my own way, I knew that I was going to need support.

Fortunately, I work in a medical facility, with people who are familiar with diversions/ostomies, so besides my extended family and lifelong friends from around the globe, I had immense support from coworkers. I had friends and coworkers go with me to appointments and visit me in the hospital.

Finding rides to chemo treatments

Since I am on the younger side of this diagnosis, many were not able to come and sit with me 2 nearly full days in a row at chemo because people work and have lives of their own, so I was not always able to even get rides to and from chemo.

I drove myself as long as I actually felt safe doing that. When I felt too weak and wobbly, I asked friends for rides and if they were unable to give me rides, I sometimes was able to make arrangements with the American Cancer Society for either a volunteer or taxi to take me.

My oncology team was actually very concerned about my prognosis because I “didn’t have family,” but I definitely proved them wrong because family is not always who you are related to, it’s also who you choose to be part of your circle. They thought I didn’t have enough support, but in actuality, I had a ton of support – they just didn’t always see the supporters!

Overwhelming support from social media

Another important aspect of getting support was that I was and still am very open about my journey. I posted it all on social media, shared it with coworkers, and started a blog. If you keep it all locked inside yourself or within your immediate family, you are missing out on a lot of support.

Since I had shared everything from the very beginning, I had so much support that it was overwhelming and I couldn’t even accept it all! Support from places and people that I never would have imagined! Some people who were not very close to me prior to diagnosis, became a lot closer and have stayed in that closer circle. My oncology office is amazing as well and I had a lot of support there.

Trying different support groups

Once I had gotten through my surgery and chemotherapy, I tried some groups with the Cancer Support Community, but I was very turned off by the interaction with them. They are a great organization, but being a younger, single, childfree person who did not have the luxury to not work, many of their programs that I was/am interested in take place during hours that I’m not able to participate.

I also found that the actual support groups were not helpful to me, as I either already knew a lot of the information or it was extremely geared towards breast cancer survivors and people with families – which are definitely needed, but these did not fit my needs or experience with cancer.

Getting involved with the Greater Cincinnati Ostomy Association

After I tried those, I got involved with the Greater Cincinnati Ostomy Association, an Affiliated Support Group of the United Ostomy Associations of America. There, I immediately found the support and understanding that I’d been seeking. I increasingly became involved after continuing my attendance at the evening support meetings and I’m now involved in leadership at the local and national levels because it had such an impact on me.