Don’t Delay Getting Back to Life

It has been 8 years since my chemotherapy and surgery to remove my bladder and prostate, installing a neobladder. I'm pretty much back to normal. I say pretty much because there are things I can't do today that I could do before the surgery.

Things like – I can't easily stand to pee. It's just easier to go sitting down now. Go longer than 4 hours without making a trip to the bathroom. Not leak a little when lifting something really heavy or getting up from a prone position on the floor. Not think about cancer every time you schedule a CAT scan or feel the slightest twinge of pain anywhere in your body. I can't do those things today.

A cautionary tale

But most, if not all, of those things are simply a function of having had bladder cancer and a neobladder. There are things I can't do today because I delayed, and still do, getting back to living a better, healthier life. This is a cautionary tale for anyone beginning their cancer bladder journey.

Don’t be like Paul

First of all, let me be clear, everyone navigates their bladder cancer journey differently. Everything I discuss below is based on my experience, but your doctor is the only one who should give you the go-ahead on what to do and not do. You and your doctor should determine your range of activity. You might use my list as a starting point for a conversation with your health care provider.

Giving what I could, not what I "wanted"

But for me, I was a bit "relaxed" in my recuperation, and not in a good way. If I were to do this again, I would not sit around and wait to feel 100 percent before giving it 20 percent. I would have given it 20 percent when I could give it 20 percent. I would have gone and exercised as soon as possible. I should not have waited until I felt like I could compete in the Olympics. I never will.

I should have done more physically. Got stronger. Got leaner. Got more active.

Waiting just led to delays

The truth is the sooner I had done those things, the sooner I would have been back to the life I had before. Waiting only delayed the process.

If you have been through the bladder cancer journey, you already know that you don't remember much about the pain and inconvenience of it. Other than knowing it was painful and inconvenient. You don't feel it now, but you will feel like you are not "living" if you don't make the effort to build back up.

Bladder cancer takes too

Cancer can take a lot from you. Cancer will take some of your feelings of invincibility. Cancer will take away your feelings of invulnerability. Cancer will take some of your pride too. Think about how often you will have strangers asking you to drop your pants so they can take a look "down there." A lot, trust me.

Cancer can even, in many cases, take away your motivation to do the right thing and get back to living. Don't let it. Make the effort—even small- to get back to your life again.

Start with the small steps. And remember, the steps get a bit bigger each day you delay, so don't delay. Don't be Paul.

Would you like to talk to others in the bladder cancer community about their experiences? Reach out in our forums.