Experts Through Experience: Helping Hands
One of the best ways to navigate life with bladder cancer is by hearing from and talking to others who have been through it. Here at BladderCancer.net, we have several experts who have experienced life with bladder cancer firsthand and regularly share their stories with the community. We asked Noel, Renata, Anita, and Paul what helped them the most during their journeys, and we’re sharing their answers with you today in the hopes that they can help. Feel free to chime in with what helps you in the comments section below!
"Not keeping my cancer a secret”
It's still early days for me on my journey as I'm still having a cystoscopy every 3 months, followed by a bit of treatment. So my journey is ongoing and things I've been doing on my journey may change, but for now I think what's helped me most, apart from my incredible family, is not keeping my cancer a secret, which I've learned many people do. I've opened the door to others to look into my life. I share my stories of treatment, surgery, recovery, hope, pain, fun, happiness and joy, amongst loads of other things. It keeps me feeling alive and valued by those that respond to me. People generally want to see that there is hope in this world, especially when stricken with something like cancer. The positive energy I create that shows others out there that life with cancer can still be a life filled with fun is what helps me most.
"Those who have faced precisely the same circumstance"
Renata: Caregiver for her late husband, Ahmad, who passed away from bladder cancer in 2014.
Connecting with people who had been in the same situation. In my case, these people were spouses of other Stage IV bladder cancer patients. I corresponded and talk a lot (online and on the phone) with people who had either been through it or were simultaneously going through it. There is no substitute for this. Everyone in your support network is important to your well-being but those who have faced precisely the same circumstance can offer insight and comfort that others cannot.
"This too will pass”
The phrase “this too will pass”
During chemo, I was feeling sick, exhausted, and I kept telling myself that “this too will pass.” It made me feel better about resting as I knew I would feel better in a few days.
Having a sense of humor has helped too. Being able to laugh when the PET scanner broke down, and we sat there for 2 hours just to be told to go home... one lady flipped her lid, but we just sat giggling. We knew there was nothing we could do at all, and that it was not worth getting stressed over something we have no control over.
Finding the humor in the darkest of moments, like when I first saw my family after my radical cystectomy operation. It was 3 hours after the surgery, and I was swollen, sore and scared. My son joked that he could pop me with a pin, and we all laughed as we had images of popping a balloon, with it flying around the room.
I think my wife... she was the treatment scribe and memory. I could just worry about showing up and not going crazy, and she could worry about insurance, Dr. appointments, next steps, etc. I was very disconnected from all of that. I urge everyone to find their "cancer assistant" - and let them deal with the administration of the disease, and you can worry about dealing with the physical and psychological parts of it.
How long did you wait before telling others about your diagnosis?