https://www.curetoday.com/view/building-supportive-communities-for-patients-navigating-cancer
When we attend to both the story and the body that tells it, we move beyond treating disease. We accompany people. We don’t just understand symptoms — we begin to understand lives.
Illness lives in the body — and so does the story of it. You can hear it in a pause before someone answers. You can see it in the way they shift in a chair, the tightness in a jaw, the way breath catches or slows. These are not incidental details. They are part of the narrative, carrying meaning that lab results and scan reports can’t capture.
This is embodied storytelling: when words and the body work together to communicate the lived experience of health and illness.
https://journalofethics.ama-assn.org/article/narrative-embodiment-and-health/2025-06
Empathy, the ability to understand and share the feelings of another, has significant implications for epistemology, the study of knowledge. Exploring the relationship between empathy and epistemology reveals that empathy can be a valuable tool for understanding others’ perspectives and even shaping our own knowledge.
At its core, narrative medicine is not just about empathy—it is about epistemology: how we know what we know in medicine.It challenges the idea that data alone is the truth. It values subjective experience as evidence.
It reminds us that meaning—grief, identity, uncertainty—is not noise in the signal; it’s part of the diagnosis.The most powerful implication of this is shared authority. When patients’ stories are treated as essential sources of knowledge—not anecdotal extras—we begin to shift the asymmetry that defines much of clinical care.This is why narrative medicine can be uncomfortable. It doesn’t just ask clinicians to listen; it asks systems to change.
In scholarship? Yes.
In spirit? Often.
In systems? Not yet.
If we want systems that truly centre patient voices, we have to move from metaphor to mechanism.
Not just asking for stories—but being changed by them.
https://patientvoicecollective.substack.com?utm_source=navbar&utm_medium=web
https://www.curetoday.com/view/iv-complications-and-the-challenge-of-being-heard
Like so many others, I find it challenging to cope with change – and the fear and uncertainty it provokes……
“My beautiful burger tasted disgustingly metallic. It was inedible. It was so awful, I scraped the rest of it right into the trash. But that was only the first of many formerly favourite foods that have ended up in the trash lately”
This phenomenon is what’s known as chemo mouth or metal mouth, according to pharmacist Dr. Jessica Caporuscio. She explains that unpleasant side effects – including these taste alterations – are unfortunately common during cancer treatments.
This bizarre side effect occurs because cancer treatments can activate certain receptors in the mouth or tongue that cause this metallic reaction.
While it can be distressing, the metallic taste and other taste changes usually resolve after treatment is complete.
New Book by Digestive Cancers Europe.
It shares the personal stories of 15 young adults(including Pamela from Ireland) diagnosed with digestive cancer. Many of them faced misdiagnoses simply because of their age.
Waiting. During a health crisis, time is not always a friend.
“Waiting defines my cancer experience. It is inhumane to wait two weeks after cancer-removal surgery before I have treatment information. I’ve since heard from other patients who have had to wait even longer to hear the results or to schedule doctor appointments.”
Ultimately, I’m waiting, waiting, waiting …
Lynch Syndrome Ireland 