5 Things I’d Tell Anyone Newly Diagnosed with Bladder Cancer

Seven years ago, I got a call telling me I had cancer - bladder cancer.

I never thought I’d get bladder cancer

I was a smoker for years. I actually had quit about 12 months prior to my diagnosis. I always knew there was a possibility I might get lung cancer. Heck, it was on the side of each of the 29,000 packs of Marlboro Lights I had bought over the prior 40 years.  But I had never heard of bladder cancer. Is that really a thing? How could I have that?

It is.

And I did.

Introduced to the world of bladder cancer

I went through a problematic chemo regimen and then an accelerated surgery schedule for a cystectomy, prostatectomy, and neobladder installation.

Understand that before cancer (BC) nothing in that sentence would have made any sense to me. But today those words are burned into my vocabulary. Along with gemzar and cisplatin, the two chemo drugs of my doctors' choice. And catheters. And bed pads. And mucus.

So many new words. So many new processes and procedures.

But all my history aside, the title of this post is “5 Things I’d Tell Anyone Newly Diagnosed with Bladder Cancer,” so here we go…

1. Stay positive

It is highly survivable. The odds are in your favor assuming you get it diagnosed early on. Even at some of the higher stage numbers, you’re better than 50/50. It’s not a death sentence. I’m not a doctor, so everyone is different and your mileage may vary. But my point is there are reasons to stay positive. And positive thinking can make your experience better. Play the cards you have with the best attitude you can. Cancer isn’t fun but bladder cancer treatments have improved over time and continue to improve. Chin up!

2. Get used to having your pants down

You will lose almost all of your humility related to having your private parts exposed, prodded, examined, and discussed. Let’s face it. Until surgery, there is only one way the doctors can look at what’s going on up in your bladder. And almost all of them involve you in a chair, naked from the waist down in a room full of people. Males and females. You learn that getting proper treatment for bladder cancer is much more important than what people think of you when you drop your trousers. Trust me. It’s only a big deal the very first time. I’m pretty sure I could walk around at a college playoff game with no pants and have zero issues. Get used to it. It’s actually kind of freeing.

3. Let go of a normal schedule

It will take a big chunk of time out of your life. You will have a ton of appointments. Some long. Some short. If you get chemo, you will have 4 or 5 hours of sitting every couple of weeks to get chemo. You will, to a degree, be at the mercy of your doctors’ appointments. You won’t really have your own schedule. For quite a while. But saving your life is worth it. Be happy you’re doing things to help you recover and beat cancer instead of being oblivious to the disease.

4. Partner up

A partner in the process can be extremely helpful. If you are married or in any relationship, let your partner know you will need them and there will work for you both to do. I don’t mean you MIGHT need them. I mean you WILL need them. You will need them for a variety of things from moral support to physical support after chemo or surgery. You can do it alone. But if you have the option, a partner can make a huge difference. Note. See issue #2. Your partner will see, hear, and be part of things you probably never wanted them to see, hear, or know about. But you get used to it. Frankly, those things become great fodder for future laughs.

5. Be flexible

Your life will change AC (after cancer). You may have an external diversion (pouches, etc.,) to deal with. You may have a neobladder like me, that could require sporadic self-catheterization. You may have to carry pads to put on beds so you don’t leak at night in hotels or at family overnights. I use “may” because everyone has a different outcome. Some better. Some worse. Sometimes it starts out bad but gets better. Sometimes you have a great start but then settle into a different path. The point is you need to adopt a flexible mindset. Your life WILL be different AC. Not worse or better. Just different. And it may change over time.

I’ve been up and down on nocturnal incontinence. I’ve gone years with no leakage at night. And then I’ll go months where I soak myself and the pad three times a week. Again - go with the flow. (Pun intended.)

So…welcome to the Bladder Cancer Club

Those are the five things I’d say to any new member of the BCC (Bladder Cancer Club.)

And if you think of it, we’re actually kind of better people for it. All club members have:

1. A positive attitude
2. No body shame
3. A spontaneous streak
4. Deep relationships with people
5. The ability to continually adapt to change

Not a bad list.

Actually, everyone in the BCC is pretty badass if you ask me!