Dialogues between Survivors and Caregivers: When Words Shape Care

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These two testimonies explore different moments of the same reality:
how words — spoken, delayed, or withheld — profoundly shape the experience of care.

One tells the story of words that fell too abruptly, creating fear and uncertainty.
The other speaks of words that were never said, leaving years of misunderstanding and silence.

Together, they remind us that communication is not a detail of care,
but one of its conditions.

First testimony

In a consultation room, in a hospital corridor, at the moment when everything shifts, words can become a reference point, a breath of air — or sometimes, a wound.

Some words hold you up when everything feels uncertain. Others are never forgotten, because they froze something, or left a mark that took time to fade.

In long-term survivorship, words matter more than we sometimes realize. Words like cure, remission, follow-up, stability. They may seem simple, familiar. Yet they rarely mean the same thing for those who say them and those who hear them.

I remember that afternoon, sometimes after the announcement of my remission. Four years after the end of my treatment.

The appointment was scheduled for early afternoon. I was with my younger sister. The minutes stretched on. Other patients went in. We spent the entire afternoon in that waiting room, the tension steadily rising. When you’re the last ones to be seen, you know it won’t be trivial.

That wait wasn’t trivial.

It planted the idea that something serious was happening.

When you’ve known relapse, you learn to read silences, delays, looks. Waiting that long was already a warning sign.

The pediatric oncologist finally sees us. Nodules. Surgery needed. Major surgery. Right away, without consultation — “it’s the summer holidays, but we can’t wait to set the operation date.”

The words fall like blows. No time to process. No time to ask questions.

The entire summer that follows is marked by this verdict. Anxiety that won’t let go. Life suspended again, when we thought we had left the tunnel behind. Each night brings its share of fears and catastrophic scenarios. Then, two weeks before the scheduled date, the surgeon calls. He won’t operate. Given the size of the nodules, it isn’t necessary.

That phone call should be a relief. But it leaves a bitter taste. Why impose such urgency? Why set a date without waiting, when the intervention ultimately wasn’t even necessary?

The words “surgery needed,” “we can’t wait” created two months of anxiety that might have been avoided. And even before those words, there was that interminable wait. Being the last to be seen, after hours of mounting anxiety, only to hear such heavy news.

I don’t think there was any malice.

Perhaps fatigue.

Perhaps a desire to do the right thing.

But for the person receiving the information, the impact is immense.

A summer under a sword of Damocles. A late cancellation that brings relief, but also leaves the feeling of having been crushed for nothing.

What’s missing in those moments isn’t just medical information. It’s the recognition of what patients are going through. The time taken to explain, or simply to say: yes, this is worrying, and yes, you have the right to be afraid.

Sometimes it’s not the words spoken that hurt, but those that weren’t said.

“I understand this is distressing.”

“I’m sorry to have kept you waiting.”

Those phrases wouldn’t have changed the diagnosis. But they might have lightened the weight. They would have said: you’re not just a medical file, you’re a person.

Years later, that memory remains. Not just because of the nodules. But because of how it unfolded: the wait, the abrupt announcement, the anxious summer, the late phone call.

It’s a reminder that words — and the way they’re delivered — profoundly shape the experience of medical care. Providing care isn’t just about treating a body. It’s also about caring for a person, with their fears and their need to be heard.

Second testimony

Ah, you’re here for radiation-induced neurotrophic keratitis?”

That simple sentence allowed me to put a name to a condition I’d been treated for since 2020. It was the first thing the intern said last Tuesday, after the usual greetings.

The most unsettling part? This information was already in my medical file. But no one had ever told me.

For my part, I didn’t ask the question. I thought I was a particular case, linked to my treatments and medical history. I’d accepted that “it was just how it was.”

Five years living with something without knowing its name. Without understanding. Without being able to search, inform myself, put words to it.

Because understanding means regaining some control.

And then there’s the very practical side. For years, I used an ointment that I now need to resume for one week per month. I recently learned it’s been discontinued.

Without knowing my condition precisely, it’s difficult to anticipate, ask the right questions, connect with other affected patients, or consider alternatives.

It’s also about being able to meet other people concerned, share experiences, reference points, resources.

For me, this highlights something fundamental: a diagnosis only has value if it’s shared.

Communication between caregivers and patients isn’t a detail. It’s a condition of care itself.

Laura Bathilde – a patient Les Aguerris – France

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These testimonies remind us that communication in healthcare is never neutral.
Words are not only carriers of medical information — they shape experiences, expectations, and sometimes long-lasting emotional trajectories.

In clinical practice, what overwhelms patients is rarely a single event.
It is more often the accumulation of small moments: repeated procedures, unanswered questions, delayed appointments, brief phone calls announcing decisions, or information delivered without time for dialogue.

Individually, each of these moments may seem minor, justified, or unavoidable.
Together, they can slowly erode emotional resources — until one last interaction becomes the drop that makes everything overflow.

This is particularly true in survivorship and reproductive care.
Patients are no longer in the acute phase of treatment, yet they remain deeply invested in their bodies, their future, and their life projects. When emotional reserves are already strained, a hurried call or an uncontained announcement can carry a disproportionate weight — not because the medical decision is wrong, but because it arrives without space to absorb it.

This is where consultations matter.

Not only as moments to convey medical decisions, but as spaces to assess psychological burden, to acknowledge fatigue — physical and emotional — and to help patients put words on what they are living. Sometimes, what patients need most is not a change in medical strategy, but permission and support to say:

“I’ve had enough.”
“Please take time with me.”

Helping patients find these words — and feel legitimate using them — is part of care.

European survivor-led initiatives such as EU-CAYAS-NET have clearly highlighted this issue. Their communication guidelines, developed directly from survivors’ experiences, emphasize that open, clear, repeated, and empathetic communication about late effects is essential to reduce distress and support long-term well-being. They also stress the importance of timing, consistency of terminology, and the need to revisit information over time, recognizing that understanding evolves and emotional readiness fluctuates.

In this perspective, communication is not an “add-on” to follow-up care.
It is a condition of care.

Providing care does not only mean treating a body or optimizing a protocol.
It also means recognizing a person as a subject — with limits, fears, expectations, and the right to understand, to question, and to participate actively in decisions that affect their life.

Sometimes, taking care simply means slowing down, listening, and noticing that the cup is already full — before the last drop falls.

Dr Charlotte Demoor-Goldschmidt. Survivorship Medical Doctor expert – Radiotherapy oncologist. CHU Angers, CHU Caen, Inserm U 1018, France

Read more articles from the Healing in Two Voices series