What NED Really Means

After you finish cancer treatment, you have imaging often at the six month and one year mark, and then several more times during the first five years to make sure the cancer hasn’t reappeared.

They don’t say you are “cured” from cancer. They rarely say you are in remission. What is normally observed is that you are NED.

NED stands for “no evidence of disease.” It means they no longer see any signs of your cancer. Those of us who have gone through this always know, in the back of our minds, that even if one tiny, microscopic spec of cancer still remains, it can and probably will, be back. This is called a reoccurrence if it returns to the same or neighboring area, or if it travels using your lymphatic system, it tends to metastasize elsewhere in your body, such as your lymph nodes, or your lungs.

No matter how hopeful and how positive you are, if you’ve been in a cancer support group for any length of time, you will know someone who was NED, who seemed to beat cancer, who suddenly finds it roaring its ugly head, and within days or weeks, it overwhelms their body, and they slip away.

A single, solitary thought goes through cancer survivors’ heads — “if I’m still alive . . . ” We all know, even if we never express it, how tentative life is, and how quickly the disease we “survived” can snatch us away.

It took me 6 months after my first NED to stop thinking “If I’m still alive . . .” when I thought about the future — as in, “I’d like to go to the craft festival, if I’m still alive then.” Cancer changes you in ways others who have not experienced it will never understand.

You get treatment, you sort of recover from the treatment, you get NED, and everything seems fine — until it’s not. I lost both of my parents to cancer, and in both cases, things seemed fine, until it metastasized and dealt its final blow.

No matter how much you know it can return, when your life returns to normal and all is well, it is still a shock when it returns. You think you have beaten a great enemy, that you have won fierce battle, and slain the enemy, only to have it reappear and let you know exactly how puny we humans really are — that a microscopic cell could snatch our victory — how fragile the human condition is.

I have no illusions. Cancer is rarely “gone.” It lies sleeping just outside our view until with a lightning strike it jolts you out of your comfortable rest.

I just try to enjoy each day, live that day as it happens, and not worry too much about the future. I like to stay busy in the present since it’s the only thing we can really be sure of.

There is a poem I read for the first time in college, called Musee des Beaux Arts by W.H. Auden. I found the words haunting back then, and after battling and surviving cancer, they ring even more true.

Musée des Beaux Arts

by W.H. Auden

December 1938

About suffering they were never wrong,

The Old Masters: how well they understood

Its human position; how it takes place

While someone else is eating or opening a window or just walking dully along

How, when the aged are reverently, passionately waiting

For the miraculous birth, there always must be

Children who did not specially want it to happen, skating

On a pond at the edge of the wood:

They never forgot

That even the dreadful martyrdom must run its course

Anyhow in a corner, some untidy spot

Where the dogs go on with their doggy life and the torturer's horse

Scratches its innocent behind on a tree.


In Brueghel's Icarus, for instance: how everything turns away

Quite leisurely from the disaster; the ploughman may

Have heard the splash, the forsaken cry, 

But for him it was not an important failure; the sun shone

As it had to on the white legs disappearing into the green

Water; and the expensive delicate ship that must have seen

Something amazing, a boy falling out of the sky

Had somewhere to get to and sailed calmly on.

A few close people will feel our loss, at least for a while. Certainly, Daedalus mourned his son, Icarus as he fell to his death. To Daedalus, the loss of his son, Icarus, was a great tragedy. But the rest of world, as portrayed in Breughel’s famous painting Icarus, pays little notice to the boy sinking below the water to his death.

In a similar way, whether we win or lose our battle with cancer, the world goes on just as it always does. We never know if we are soaring too close to the sun, melting the wax that holds us together, and plunging us into the icy waters of the unknown.

Author: Jan Mariet

An avid writer, former teacher, and ornithological enthusiast, Jan Mariet blogs about her life journey with psoriatic arthritis, ankylosing spondylitis, congenital hip dysplasia, and her battle with cancer at janmariet.com.

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