Experts Through Experience: Maintaining Normalcy

Experts Through Experience: Maintaining Normalcy

Some people become experts in a subject through years of education, while others quickly gain expertise through personal experiences. Here at BladderCancer.net, we have an amazing team of bladder cancer experts who know everything about what it’s like to live with bladder cancer – because they have been there. We picked their brains and want to share their great stories and advice in a new series called Experts Through Experiences. We asked four of our experts, Noel, Renata, Anita, and Paul how they avoided being consumed by all things cancer-related during their journeys, as well as how to maintain some normalcy. Here’s what they had to say!

“I’ve adapted to a different kind of living”

Noel: Diagnosed in April, 2017 with high grade pT1 transitional cell carcinoma of the bladder.

I wouldn’t say that I was consumed by all things cancer after being diagnosed, but it’s very difficult not to think about anything else. I didn’t want to bury my head in the sand and was keen to be as proactive as I could be in my cancer journey. So I didn’t maintain normalcy, as I decided against keeping my cancer diagnosis private and opened it up to others outside of my immediate family. This I felt gave me the control over my cancer, and I made it quite clear to all those around me that I didn’t want their pity either. Work became an issue because of all the continued treatment, which left a big part of my life empty, but I tried to do other things to keep myself busy, which helped plug the gaps. I continued playing sports, which I did prior to diagnosis. I socialized with others as often as I could and made sure I didn’t stop going to family and friends’ events. However, with all that said, I don’t think there is a day that’s gone past without me thinking about my cancer. So I don’t think it will ever be the same for me again, but I’ve adapted to a different kind of living today, which I’m content and happy with.

“Coming up with a clear plan of action”

Renata: Caregiver for her late husband, Ahmad, who passed away from bladder cancer in 2014.

There’s an answer I wish I could give, but the honest answer is that after my husband was diagnosed with Stage IV bladder cancer, I don’t think I did a good job at all of maintaining normalcy. But the good news for others is that, looking back, I can see what I would try to do differently if ever faced with such a situation again.

Plan the rest of your life accordingly

Coming up with a clear plan of action for treating the disease is a key to feeling in control. Furthermore, the patient, the caregiver, and the primary doctor should talk about the plan and its expected timeframe. Having a clear sense of the treatment and related tests over the next few weeks or months allows the patient and caregiver to focus on other (hopefully fun and fulfilling) things during that time. The plan may change down the road, but if you know, for example, there will be six visits to various doctors over the next two months, you can plan the rest of your life accordingly.

Explore your creative side

Focus on things you enjoy that you can do. For instance, my husband had a lot of pain that limited his mobility, and so we couldn’t do a lot of exercise outdoors like we did in the past. Instead, we took up painting because we both had an interest in it, and it was something fun and new that we could do without limitations. Illness is a wonderful opportunity to explore your creative side or try things you’ve always wanted to try but hadn’t gotten around to. The novelty of it can help take your mind off the illness.

“We tried to take our minds off it”

Anita: Diagnosed with a neuroendocrine small cell bladder tumor at age 46.

As a family, we still had to get up for work, we tried hard to speak about “our day” and not mention cancer in the first 10 minutes of being at home. We tried to put it at the back of our minds. I started my Facebook page to write it all down, and that seemed to help so much. We tried to do “days out” to take our minds off it. And vodka!

“Compartmentalizing what was going on”

Paul: Diagnosed September, 2012 with multiple tumor, Stage 2 Ta High-grade bladder cancer. Neoadjuvant chemo and then radical cystectomy/prostatectomy January, 2013. Neobladder.

I started writing about it it on a blog (peestrong.com) to help me compartmentalize what was going on. At first, I was thinking about it all the time. But I found when I could write down what was going on and how I was feeling, it no longer sat inside my head. I could say… “There’s that. Now on to the rest of the to-do list,” and thinking about cancer was crossed off.

The other thing is I have a strong understanding that the mind works terribly when under stress and when in fear. Fear makes us believe stupid things and stupid cures. It makes us chase rabbits hoping to find a solution. I knew too much information meant too much anxiety. I therefore, listened to my doctors, asked questions, trusted them. And never once googled anything about bladder cancer.

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