Listen to Each Other’s Stories

Hours after my husband died from bladder cancer in 2014, I felt rage as I read a comment in an online forum devoted to bladder cancer.

The author reassured a newly diagnosed patient that bladder cancer is primarily a “nuisance” cancer that requires chronic surveillance but not much more.

How can you call it a “nuisance”?

I fired off a blistering response to that author telling her that I literally had just lost my husband to this disease and to hear it called a “nuisance” was insulting at best and downright cruel at worst.

Clearly, it wasn’t the best moment for me to be reading, let alone responding to comments online.

Over time, I came to realize that bladder cancer (like any illness) has many different paths and experiences. It is easy to lose sight of that when we are so steeped in our own experience of it.

We were both right

The author was right. For her, bladder cancer was truly just a nuisance. She had been diagnosed 20-something years earlier and went through years of surveillance, periodic TURBTs, and BCG. But it had never progressed to a life-threatening form the way it had for my husband.

My husband's cancer came back with a vengeance

In contrast, the only bladder cancer I knew was the one that had initially presented itself as mellow but then came raging back as relentless. It progressed during chemo. It caused large tumors that caused constant pain. It had caused my previously very healthy husband to go from jogging in April to needing a walker by July.

That was the bladder cancer I knew and so it was hard for me to fathom any other version of it.

How is this relevant today?

My husband and I had spent 11 months nearly sequestered at home, going out mostly only for doctor’s appointments and to restaurants when we could, but always in the context of managing pain and logistics.

Remembering those days brings me full circle to this moment in time. Many of us across the country are now quarantining or sheltering in place due to the novel coronavirus. And the stories are starting to appear – the stories of individuals' experiences with the illness.

And they vary widely.

For some it’s mild, for others it kills

Health officials tell us many people recover quickly and just feel like they had a mild flu – actually, many people in that category we may not even count yet as testing is so limited. They also encourage us to stay home because many of us may be walking around feeling well and totally asymptomatic.

Some patients have two-weeks of flu-like symptoms but can be treated at home. And some, as we are hearing (more than we wish we had to) need ventilators to have a shot at survival.

And some are dying. Spain and Italy face crises of too many bodies piling up too fast. It is heartbreaking and we all hope for good news soon.

We need to listen to each other’s stories

Whether it’s the virus in the news today or the bladder cancer that is with us for life in some form, we each experience a unique trajectory of the same disease. And we need to hear the wide range of stories. The good stories and the sad stories. The hopeful and the heartbreaking.

Hearing different perspectives

Being “positive” and calling an illness a “nuisance” is hurtful to those who lost people to it. But similarly, stories of death from bladder cancer can scare patients who are very likely to experience it as just a “nuisance.”

We are all “right.” All of our experiences are real. We grow in empathy and kindness when we listen to all the stories.