Bladder Cancer Resources for Warriors Under 40
When I was diagnosed in 2016, there were very few bladder cancer resources online, especially for someone as young as I was. Virtual meetings were not really yet a thing.
Facebook groups were abundant, but the information was (and is) not always reliable there. They worked for support, but most of the active participants were much older...and male.
I had found some general cancer resources online for the adolescent and young adult (AYA) crowd. Yet, I hesitated as the sites listed that "AYA" was defined as ages 15-39. I was nearly 41 at the time. So I contributed to the organizations by purchasing some gear but didn't really pay much attention to anything else, thinking I'd be unwelcome.
BOY! Was I ever wrong!
Starved for socialization
Last year, the pandemic made me bold. I was starved for socialization and support. I live alone and began working from home. I needed something to force me to not look at work. My friends around the globe were tired of Zoom by the end of their days and did not want to spend more time online at the end of the day. This was especially true as they had significant others, kids, and/or pets. All things that were glaringly absent from my life through the pandemic.
Taking the plunge!
I took the plunge and joined one of the Digital Meet-Ups (DMUs). I thought, "What's the worst that can happen? They ask me to leave? They kick me out? Report me to the organization? If anything crazy happens, I'll just apologize and exit stage left."
Fortunately, nothing "crazy" happened, except that I have gained more friends, more support, and more fun in my life! Once I joined, I didn't look back. Now I have plenty of options for support, and I'm so glad.
Supply and demand
Since there are not many localized AYA or bladder cancer support options out there, I have put together this list of AYA-friendly organizations with virtual support options. Organizations that will not shy away from you and your journey...even if you are in your 40s!
I have linked to these organizations' websites for your convenience:
American Cancer Society's Cancer Survivors Network - CSN is a way to meet others and develop friendships, exchange practical information, and support one another through chatrooms. There are chats for young adults, bladder cancer, other demographic groups, and various cancer-related topics.
Cactus Cancer Society (formerly Lacuna Loft) - CCS provided online support programs to young adult cancer patients, survivors, and caregivers long before the pandemic! They offer diverse online programs regardless of diagnosis or physical location. They are there to ensure that survivorship support is available, accessible, and specifically designed for young adults facing cancer.
Cancer 180 - This program is part of MD Anderson's oncology plan and provides AYAs with additional support through in-person and virtual programming. Cancer 180 recognizes and supports the unique issues facing young adults facing cancer. They provide educational and social support for those experiencing cancer.
CancerCare - CancerCare is the leading national organization dedicated to providing free, professional support services. These include case management, counseling, support groups, educational workshops, publications, and financial assistance to anyone affected by cancer.
Elephants & Tea - E&T is a media company, under the Steven G. Cancer Foundation umbrella, with a mission to help AYAs patients, survivors, and caregivers know they are not alone in fighting cancer. They publish a quarterly magazine along with other articles electronically through their website. They also host a number of other events regularly.
GRYT Health - GRYT is here to support and build each other – and the industry – up. 80% of the GRYT staff are cancer survivors. You can utilize their app from your smartphone or tablet as well as access everything traditionally online. They host an annual Global Virtual Cancer Conference (GVCC) that brings patients, medical and pharmaceutical leaders together to improve life for survivors. GRYT also participates in research projects and offers many other programs virtually.
Stupid Cancer - Stupid Cancer programs globally empower all adolescents and young adults impacted by cancer. All of our programs are designed to help you Get Busy Living by connecting with other AYAs and gaining access to critical information and resources to improve your quality of life with and after cancer. They offer DMUs, local meetups (not yet resumed from a COVID break), cancer stories, discussion series, webinars, summits, and an annual CancerCon.
Teen Cancer America - TCA is a change agent improving the lives of young people with cancer. We create youth-centered ecosystems, supporting young people with cancer, their families, and the hospitals and healthcare professionals who care for them. This group is definitely focused more on the younger side of the AYA age range.
Young Adult Survivors United- YASU is a virtual and in-person health and wellness community for young adult cancer survivors and co-survivors. They provide ways to cope and thrive with emotional/mental health, social, financial, and spiritual support. YASU provides many virtual support programs: weekly daytime, evening, African American, LGBTQIA+, grief, and co-survivor support meetings, a virtual book club, and even a prayer group.
Have you ever participated in a support group? What would say you gained from your experience? Let us know in the comments!
How long did it take to get diagnosed after your first symptom(s) appeared?