My First Lesson in Healthcare Advocacy- The Unbearable Weight of Waiting

By Julie Stevens, Founder of MOJO Health

There's a special kind of torture that comes with knowing you have cancer growing inside your body and being told to wait.

After my colon cancer diagnosis, I was scheduled for surgery on July 21st. July 21st. When I heard that date, my entire body rebelled against it. I could feel something was wrong—not just the cancer, but something more immediate, more urgent.

I tried everything I could think of to move that date up. I called the surgeon's office repeatedly, explaining that I had a gut feeling (quite literally) that waiting until July 21st was too long. Could we please, please consider early July instead?

"Mrs. Stevens, July 21st is the earliest we can accommodate you. The surgeon's schedule is completely booked."

I remember hanging up the phone and saying out loud to my empty kitchen, "I'm never going to make it to July 21st."

I wish I had been wrong.

The July 4th weekend arrived, and with it came a nightmare I wouldn't wish on anyone. Suddenly, I couldn't process food through my colon. Nothing was moving. The backup was immediate and severe, but when I called the on-call service, I was told it sounded like a stomach bug.

A stomach bug.

I knew it wasn't a stomach bug. I knew my body was shutting down, that the cancer was creating a blockage that was getting worse by the hour. But I was told to wait it out, drink fluids, and see how I felt after the holiday weekend.

So I waited. Because that's what good patients do, right? We wait. We don't question. We assume the medical professionals know better than our own bodies.

By Tuesday after the Fourth of July, I was in agony. I couldn't eat anything solid. Liquids were becoming impossible. I felt like I was choking from the inside out—bile and fluids backing up with nowhere to go. Every swallow felt like my body was rejecting life itself.

I called the surgeon's office again. This time, I wasn't polite. This time, I wasn't the compliant patient.

"I need a PET scan, and I need it now. Something is very wrong."

"We'll put in the order," they said. "Someone will call you back."

Days passed. No call.

I called again. And again. Each day, I felt weaker, more desperate, more like I was drowning in my own body. The backed-up fluids made me feel like I was being poisoned from within. I couldn't sleep. I couldn't think clearly. I was literally choking on my own bile.

Finally, on July 11th—a full week after I first called for help—they scheduled the PET scan.

July 11th.

Seven days of unnecessary suffering because I had initially accepted "someone will call you back" as an answer.

That week taught me the most valuable lesson of my entire cancer journey: being the squeaky wheel isn't rude—it's survival.

If I hadn't kept calling, kept pushing, kept refusing to accept that this level of suffering was normal, I would have been lying in that bed for another entire week. Another week of choking on bile. Another week of my body shutting down while cancer grew unchecked.

The healthcare system isn't designed for urgency. It's designed for schedules, protocols, and the assumption that patients will wait quietly for their turn. But cancer doesn't care about schedules. Your body doesn't care about protocols. And sometimes, waiting quietly is the most dangerous thing you can do.

I learned that advocating for yourself isn't just about asking nicely once. It's about being persistent to the point of annoyance. It's about trusting your body over their timeline. It's about understanding that in healthcare, the squeaky wheel doesn't just get the grease—sometimes it gets to live.

This experience fundamentally changed how I approach healthcare, and it became one of the founding principles of MOJO Health. We shouldn't have to beg for urgency when our bodies are screaming that something is wrong. We shouldn't have to choose between being polite and being heard.

Your intuition about your own body is data. Your pain is information. Your fear that something is getting worse isn't anxiety—it's intelligence.

When I finally got that PET scan on July 11th, it confirmed what my body had been trying to tell everyone for over a week: the cancer was causing a significant blockage, and I was in immediate danger. What had started as a scheduled surgery became an emergency that required immediate intervention.

Seven days. I suffered for seven additional days because I initially trusted their timeline over my body's urgent signals.

This is why I'm so passionate about teaching people to advocate for themselves in healthcare settings. This is why MOJO Health exists.

Because no one should have to lie in their own bile for a week, choking from the inside out, waiting for someone else to decide their symptoms are worth addressing.

Your body is not a suggestion. Your symptoms are not a request. Your pain is not a proposal.

They are urgent communications that deserve immediate attention, especially when cancer is involved.

The lesson isn't just about being persistent—it's about understanding that in healthcare, nice doesn't always work. Sometimes you have to be the person who calls every day. Sometimes you have to be the patient who won't take "we'll call you back" as an answer.

Sometimes, being the squeaky wheel is the difference between suffering and survival.

And that's a lesson I'll carry with me forever.

This is part one of my surgery story. Next week, I'll share what happened when we finally got that PET scan, and how that July 11th appointment changed everything...

May you live long and lucky