I heard about it on a news radio program. Fernweh. It is a German word, quite unique and without an exact translation; but it roughly translates as having a longing for a place you have never been. As opposed to homesickness, which is to miss the place you came from, this is about missing a place where you have not been. Nearly the opposite of déjà vu, which is to have a feeling of having been somewhere before; in this case, it is a sense of belonging somewhere you have never been. The longing comes from realizing you will never get there. The literal translation of fernweh is farsickness, having almost gotten to a place and missing it.
Most of our patients surely must experience this feeling. Their diagnosis means they will never get to where they’d thought they would. The place they always assumed they would go to is suddenly altered. Whether it was a plan for what life would look like in retirement, future travel, the luxury of good health, or other concrete longings — eg, seeing children grow up, walking a daughter down the aisle, holding a first grandchild. The future is challenged and changed by their diagnosis. And profound grief accompanies that realization. If only, what if, I want a do over.
In a family meeting I was in just today, our physician asked Joe, a patient with an advanced lung cancer, what he understood about his disease. His response was simple and blunt. “I understand that I’m screwed. That there is no way out of this.” He was silent for a moment before adding, “I feel like I’ve been locked away in prison even though I did nothing wrong. And they threw the key away, and there is nothing for me to do.” He paused then, “I had so many plans.” That, I believe, is fernweh.
The next thing that happened was not unusual. His sister shook her head and said, “Don’t say that. It’s not true. There is always a chance, a miracle, or a new chemo.” He didn’t respond, neither agreeing nor disagreeing. He looked at her without malice or anger, but with a detached kind of disbelief. If he could acknowledge what he knew was true why couldn’t she? This is not uncommon, someone close tries to convince the patient that they can’t give up. All they need do is stay strong, physically and mentally, and to fight.
Sometimes we caregivers may do something similar. Our own discomfort can be a barrier. Do I want to be the one to agree that, as my patient said, he is screwed? We worry about taking hope away, and we say what we know is not true, albeit a modified version. We say what we are more comfortable saying. We may even try to convince them not to long for what they will miss, and instead to be grateful for what they have. Which is true and vital. But the altered future is not what they had imagined.
If you ask most people how they would like to die, they have a picture of peacefully dying in their sleep. If you ask how they envision their life prediagnosis, it is wide open, an endless road with a shimmering horizon. But after the diagnosis, the shimmering horizon turns out to be a mirage, the desert heat tricking their minds. What they want is what they thought they had coming.
One communication challenge we may encounter with our patients, regardless of the stage or progression of their disease, is their whisper of longing for a future now out of reach. What happens to their fernweh?
Circumstances and logistics can delay a patient considering their loss of the future. They go from diagnosis to treatment planning, from new doctors to strange scans and tests. Their timeline is plotted out for them: 6 cycles of chemo, 10 weeks of radiotherapy, surgery next week. They become the proverbial deer in headlights. There is no time to think, yet there is no stopping the thoughts. This is fernweh, missing the future, the feeling of where they belonged. Grief, sadness, and depression may all be present. In an effort to help, we may try to “jolly them out of it” or we may ignore it entirely, continuing to provide care as if we never heard what they said. I’m not suggesting we would blatantly ignore a patient, but rather we may fail to ask for clarification when the patient makes a statement that leaves us uncomfortable.
So, what can we do in this situation? The simplest answer is to stay simple. By that I mean not trying to over explain, not working to find the silver lining. Acknowledging their reality is okay. When Joe said he was screwed — a euphemism for the word he actually used — the room went quiet. He had said the most profoundly true statement, and everyone was uncomfortable. His sister told him, said in love yet with obvious discomfort, not to say that. But by doing so she invalidated him.
A dozen quick responses raced through my mind as I tried to decide if I should correct the sister, or try to soften the harsh reality he had defined. I settled on the simple truth. “You’re right. You’re screwed.” His sister drew in an uncomfortable breath but listened as I continued. “But you do have some choices. They will not change the final outcome. You will die from your cancer. But you can choose to do more chemo, or you can choose not to. You can choose how and where you want to spend the time you have.” I wasn’t sure if I was right to affirm what he’d said. Because of how crass and adamant he’d been in his declaration, it made me feel like agreeing with him was embracing his darkness. He shook his head and pointed at me. I had a flicker of panic that by agreeing with him I had upset him. Instead he said, “Thank you. Thank you.” He was sad, feeling fernweh, longing for the place where he was meant to go.
Ann Brady is a symptom management care coordinator at a cancer center in Pasadena, California.
This article originally appeared on Oncology Nurse Advisor