What Thoughts are Top of Mind for People Living with Bladder Cancer?
The experience of having cancer is loaded with emotions, starting from the minute you are diagnosed and ending, well, sometimes never. Plainly put, having cancer changes your world.
Our 4th Annual Bladder Cancer In America survey included a question that tried to capture some of these feelings by asking people how bladder cancer has changed their self-image or affected their mental health. Not surprisingly, there were a range of responses. Here are some that stood out to us.
Bladder cancer is on your minds
Many survey respondents shared that they think about their bladder cancer all the time. It is, according to a respondent, “A weight I carry around with me.”
This constant thought was often the case with people who have a urostomy: Management is time-consuming, and planning ahead is always necessary. For other people with bladder cancer, discomfort and pain keep their cancer top of mind.
Another thing that keeps cancer in people’s thoughts is concern about what comes next, even if it is just anticipating your next cystoscopy. The uncertainty of what the future will look like, with or without cancer, can be difficult to forget.
You cope in different ways
Luckily, many of you have found strategies to take your minds off of cancer, even if just for the length of a walk or a meditation session. Mindfulness strategies, prayer, and alternative health methods, such as acupuncture, have helped some of you, as has working with a therapist. Medicine for depression and anxiety has also provided people with relief.
Respondents were grateful for support from friends, family, and their religious or spiritual communities. However, many wished that there were more bladder cancer support groups in their local areas, as well as support groups specifically for women or men with bladder cancer.
It's okay to say "no"
Feeling overwhelmed? Protect your time; it is okay to decline if you are not feeling up to an activity or commitment. As one respondent said, “I am very good at taking care of me. I feel like I can say no to things when I am not up to doing so.”
You may experience depression and anxiety
Depression and anxiety affected a range of respondents at different stages of their cancer experiences. For those who suffered with mental illnesses before bladder cancer, having cancer sometimes made these conditions worse.
Even in people who are post-treatment, follow-up visits and cystoscopies often trigger anxiety. This was due to fear of a recurrence of bladder cancer. One respondent shared, “Every ache and pain in my lower abdomen scares me thinking it is bladder cancer returning.”
You have also found silver linings
Still, bladder cancer has helped some people find a greater appreciation for the small things in life. Despite their diagnosis, an “attitude of gratitude” was common, summed up best by one respondent who wrote, “Every day is not great, but I am grateful for every day.”
Many people reported feeling stronger, with an enhanced sense of life being a gift. “I never pass up an opportunity to remind my loved ones that I love them. I still get frustrated sometimes over day-to-day trials, but usually remind myself that I am fortunate to even be around to have those problems,” said a respondent.
Cancer caused others to focus on themselves and spend more time on hobbies, physical activity, and eating well. Their advice: Accept what you can not control, and do not be afraid to clearly state your needs and ask for help when needed.
It has changed your relationships
Cancer not only changes you, it can change the people around you. Some reported feeling “shut out” by people close to them who had difficulty processing their diagnosis. Others reported that their friends and loved ones were afraid to talk about cancer. This can lead to not wanting to talk about your cancer at all. As one person put it, “I do not share my diagnosis with a lot of people because I do not want them to see me as weak or sickly. I do not want to be defined by my cancer.”
Worrying how bladder cancer affects the family
Many people reported worrying about how their cancer diagnosis would affect their families. Those who were seen as leaders now worried about becoming burdens. One respondent shared, “I feel like I have to be strong for my family so they do not worry.”
Other respondents expressed how bladder cancer has negatively affected their social life, with one sharing, “I am single and limit myself from meeting new people or dating. I do not want to bring others into my problems.”
Discomfort and leakage left some respondents unable to go to places or participate in activities they once did. In addition, many respondents now avoid sex, out of fear that it will be uncomfortable or dangerous.
You have found power in knowledge
Bladder cancer causes people to feel a range of emotions. However, responses show one thing was constant: Learning more about bladder cancer helped survey respondents feel better. Here are some of the ways that knowledge helped respondents navigate their cancer experience:
“Fear of the unknown is a problem. When first diagnosed, there are so many unknowns that you do not even know what questions to ask. It is normal to fear the worst. It takes time to educate yourself and to understand what this disease is and how it is treated. Patients need reassurance, understanding, and hope. They also need to know that it takes time to become familiar with the terminology and the options. I find that fear of the unknown, while becoming familiar with the ‘new normal’ is problematic.”
Overcoming the fear of the unknown
“When I first realized I had bladder cancer, it scared the hell out of me for not knowing anything about it...Since all this happened almost 1 year ago, I am now educated in what is going on in my body, and I am less afraid.”
“I am stronger. I have info now. I have been through it and I read much on the topic. I feel informed.”
“I have a wonderful, supportive urologist. I know I can ask any questions and he will be very happy to explain. He has made having bladder cancer more tolerable. His office staff are all wonderful. It makes this a lot better.”
The 4th Annual Bladder Cancer In America survey was conducted online from January to May 2020. 589 people completed the survey.
How long did it take to get diagnosed after your first symptom(s) appeared?