For Dorothy, being diagnosed with bladder cancer almost four years ago reinforced the importance of living in the present and appreciating every moment. This holds true even in some of the most unique circumstances, Dorothy explains. “I had my 76th birthday party with my grandchildren and daughter and son-in-law on Zoom this year,” she said. Despite the challenges of living with cancer during today’s uncertain environment, Dorothy and her family are making it a priority to adapt and find new ways to celebrate together.
Dorothy is not alone in her journey. In fact, an estimated 81,000 people in the U.S. will be diagnosed with bladder cancer just this year.1 Everyday life for people living with cancer can be filled with uncertainty. However alone someone living with bladder cancer, or any illness, might feel during these tough times, there are thousands of other patients asking many of the same questions about the risks of seeking treatment within today’s healthcare settings.
Dorothy says staying connected has been the most important thing for her. Whether a person has been recently diagnosed or is already undergoing treatment, finding a network of support can help him or her deal with feelings of anxiety and learn from others’ experiences. Although patients and caregivers may not be able to attend a support group in person right now, below are some ways to help cancer patients stay connected and supported through unprecedented times.
Lean on Loved Ones
Many people can be caregivers — including relatives, friends, church groups, social groups, neighbors or significant others — and the support they provide can take just as many forms.
Dorothy was lucky enough to find her greatest support right in her own home. When Dorothy received her initial diagnosis, she recalled feeling angry, scared and uncertain. She turned to John, her husband of 53 years, to help her determine a path forward. John assumed the role of caregiver, or “sharegiver” as he likes to call it, and supported Dorothy in different ways as her needs changed. He would be there to listen when she needed to talk about her concerns and help her conduct research to learn more.
“Patients will have worries about what’s happening,” Dorothy said. “Having someone there to bounce ideas and fears off can help them continue the cancer journey with hopefully less anxiety.”
Turn to Technology
Caregivers and others in a patient’s support network don’t have to live in the same house to provide valuable emotional support. Whether it’s making regular phone or video calls to check in on a loved one, calling a doctor’s office to schedule an in-person or telehealth appointment or helping to conduct research, technology makes it easier for caregivers to help from a distance too.
Technology also makes it possible for patients to continue conversations with their doctor. Telehealth platforms allow patients to chat with their doctor via video without stepping foot in a hospital or waiting room. Patients should talk to his or her doctor about what options might be best.
Dorothy has turned to technology out of necessity. “When my primary care physician examined me in person for my annual check-up March 27, she told me that our visits for the foreseeable future would be done through telemedicine.”
Find Comfort in the (Online) Community
Sometimes it’s helpful for patients to connect with other people who are experiencing — or have experienced — the unique challenges associated with bladder cancer. For patients who can’t leave their house, there is an active and engaged online community of patients, advocates and healthcare professionals who are eager to share and discuss their experiences. Several patient advocacy organizations provide online resources and support for patients and caregivers.
Dorothy suggests patients “stay up-to-date by reading about new research and count on your loved ones as caregivers. In my case, I married Superman, so my ‘sharegiver’ has incredible powers. So often doctors had not filled in the gaps in our understanding about what to expect from bladder cancer.”
Dorothy and John have learned so much from their experience that they want to share it with others. As advocates for the bladder cancer community, they are sharing their experience so others can learn, including by participating in a video series called Let’s Target the Tough Stuff on YouTube. Visit the YouTube channel at https://www.youtube.com/LetsTargetTheToughStuff to hear more from them and other members of the bladder cancer community about how to tackle some of the hardest challenges.
Sponsored by Astellas Pharma US, Inc. and Seattle Genetics, Inc.
1. American Cancer Society. Cancer Facts & Figures 2020. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/cancer-facts-and-figures-2020.pdf. Accessed 04-13-2020.