The NED Life

Today officially marks 3 years since I finished active treatment for stage iv colon cancer. Now to the uninitiated, that may not seem like a big milestone, but it is. My chances of recurrence have now decreased significantly and will decrease sharply again at the five year mark. I consider July 19 to be my NED anniversary, but today is what my doctors measure by. The five year survival for stage iv colon cancer is somewhere in the teens, with the average lifespan post diagnosis is about 2 1/2 years. Once colorectal cancer is in the liver, as mine was, it is very likely it will come back, even after resection. So with all that, to be where I am right now is a big deal. I’ve had a few scares in the last 3 1/2 years, and despite my many other medical issues, I’m still here and still NED.

A friend shared this piece of prose on Facebook this week and I feel the need to share it here.

“They said to go home”

They said, ‘the scans look fine, your body will recover, you don’t need to be here anymore. The cancer might come back, but until then there’s nothing we can do.”

They said to go home.

They said, “go on and live your life. Take a breath, take a nap, maybe even take a vacation. Go back to your jobs, back to your hobbies, back to laundry, dishes, and paying the bills. Spend time with your family, meet a friend for lunch, catch a movie with your loved ones.”

It sounded nice when they said to go home..
So we went home.

But the home we went back to wasn’t as familiar as we thought.

The paint was the right colour and the furniture was in place, but it wasn’t the same. Our thoughts, feelings, and interests had changed. Our relationships, jobs, and bodies felt so much different.

They said to go home, so we tried to go home, but it didn’t feel like home.

We felt lost. It was as if we had been on a path, kidnapped somewhere in the middle, turned around 20 times, and set off in a new direction. We didn’t know which way was up or down, left or right. We felt stranded in the desert- abandoned, desolate, and lonely.

They said to go home.

But home was out of reach. The home we knew didn’t exist anymore. We wandered around before trying to build a new home. But the new home crumbled and cracked, forcing us to repair, rebuild, or start completely over.

They said to go home.

But they didn’t understand. After seeing thousands of patients in this position, they still didn’t understand. It looked so simple from their perspective. Go home, go back to your life, pretend that cancer never came.

But we couldn’t go home.

Our souls were altered on the deepest level. Our hearts were shattered, our minds were chaos, and our bodies hurt. They couldn’t see it.

Then we saw others. “Do you know where you are going?” we asked. “No, I feel rather lost,” they would say. “But you are welcome to join, and we can pave a new path together.”

In that moment, though we were all still lost, we felt a glimpse of home. Our hearts connected and friendships formed on the simplest notion of being aimless wanderers together. “Thoughts and feelings make sense given all that you’ve been through. Others may not understand, but I can see, because I’ve walked a similar path.”

“You belong here.”

Our hearts began to relax. We took a deep breath of fresh air.

They said to come home.


This is so true. It’s so hard to go from being under close medical surveillance to suddenly being told to go home, live your life, and come back in three months. You go home, but home doesn’t quite fit anymore. You’ve been irreparably changed and you can’t ever go back to the way it was. But no one tells you how to fit back into “normal life.” So please, remember that NED (no evidence of disease) life isn’t easy. It’s a whole new kind of hard with no road map.