Time Matters, Priorities Change: A Nurse and Cancer Survivor on Living with the Pandemic

Everything is different, and the same.

Michael Himbeault/Wikimedia Commons

It’s going to be a while before things get to normal, if they ever do. It’s more like the future will become the normal.

The only thing in my experience I can liken it to is my cancer survivorship: you start living your life again, but everything is different. Priorities change. Your sense of safety never fully returns, yet because of this you become more purposeful in living: time matters. It’s as though you go on living, but learn a new way to do it.

There’s actually a sense of freedom accompanying the realization that nothing/no one lasts forever.

Finding a middle ground.

After I completed treatment, I watched the Jeff Bridges film Fearless (1993). His character is a survivor of a horrendous airliner crash, and he develops a sense of invincibility as a way of coping. I understood his character really well. You either hide in fear, or you go forward as if you are invincible. Eventually, you discover a middle ground. […]

2020-05-27T10:26:29-04:00May 27th, 2020|infectious diseases, Nursing, patient experience, Public health, wellness|0 Comments
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How Can We Improve the Hospital Experience of Visually Impaired Patients?

VIP Care Toolbox used in QI project

“Hello, I’m your nurse, Jane. Are you able to see me clearly?”

I have trouble functioning without a pair of eyeglasses within reach. If I were in the hospital without my glasses, I’d be at a loss—unable to read for pleasure, let alone read menus or instructions or consent forms. How much harder is it for people with moderate vision loss, or those who are totally blind?

Christine Carlson and her colleagues at St. David’s North Austin Medical Center in Austin, Texas, set out to answer this question. They met with visually impaired people in the community, reviewed the literature, and surveyed their own staff in order to learn the best ways to accommodate the unique needs of visually impaired patients, or ‘VIPs.’

In “Caring for Visually Impaired Patients in the Hospital: A Multidisciplinary Quality Improvement Project” in the May issue of AJN, the authors highlight how frightening and frustrating a hospitalization can be for those with limited or no sight, and share simple, practical interventions that can make an enormous difference in the safety and quality of a VIP’s hospital experience.

“I’m always afraid to go to the hospital. They don’t know […]

2020-05-21T09:52:23-04:00May 21st, 2020|patient experience, Patients|0 Comments
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Permission to Grieve: A Poet Addresses the Unmapped Territory of Pregnancy Loss

You were so new, still more dream than person.

A poetry submission hits a personal chord.

photo by Susanne Nilsson/flickr

As the column coordinator for AJN’s Art of Nursing, which publishes poetry, flash fiction, and visual art related to health and health care, many poems cross my desk. I always appreciate the creativity and emotion in these poems, even when they aren’t quite a fit for our journal. And then there are the ones that not only fit, but that strike a personal chord and stay with me.

“Carrying,” by Katie Manning, PhD, MA, is one such poem. (Click on the PDF for the best version.) It immediately touched me because of the powerful way it described a sensitive topic: pregnancy loss. As a mother who lost a pregnancy in my second trimester, I found myself nodding with tears in my eyes at her elegant descriptions of grief and loss.

The poem received universal praise from our peer reviewers, and when I wrote to Manning to tell her we’d accepted it, I added a personal note about my own experience (something I had never done as an editor). We exchanged words of comfort and spoke about how the topic is not nearly discussed enough.

An […]

2020-03-16T12:16:01-04:00March 16th, 2020|patient experience, women's health|2 Comments
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Putting Down Her Burden: A Patient’s Final Choice

‘goodbye, inhaler!’

Chronic illness as a Sisyphean bargain.

Sisyphus was a legendary king of ancient Greece who was condemned by the gods to eternally roll a rock up a hill, only to have it roll down again each time as it neared the top.

Many people with chronic illness today may be able to relate. Chronic illness can mean years or even decades of worsening symptoms and ever more complex medication and treatment regimens, side effects of treatments, treatments for side effects, monetary pressures, activity limitations, a sense of separateness from the legions of the merely ‘walking worried’ around us, and the subtle pervasive tension and vigilance of never quite knowing what might come next.

The ironies of advanced medicine.

The assumption, of course, is that all the effort is worth it. And it is: many of us benefit from, or know people who benefit from, drugs that keep them alive when 50 or 100 years ago they would have died long ago, or keep them able to walk, or breathe without a struggle, or sleep without excruciating nerve pain or the itching of terrible skin sores, and so on. Life has always been about compromise; these are simply new refinements of a universal equation.

2020-01-23T10:03:01-05:00January 23rd, 2020|Nursing, nursing stories, patient experience|1 Comment
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A Sense of Meaninglessness and Disconnectedness: Addressing Spiritual Distress Among Cancer Survivors

“I lost a critical year of my life, and now I can’t move forward. I feel stuck. My life is passing me by, and I don’t know what I’m supposed to do anymore.”

This quote is from a composite case example that focuses on the spiritual distress experienced by some cancer survivors. Treatment may be over with, and the prognosis may be excellent. All signs may point to the probability of a cancer-free future. But after confronting a potentially life-threatening diagnosis, many survivors struggle with a sense of meaninglessness or disconnectedness.

In “Assessing and Managing Spiritual Distress in Cancer Survivorship” in the January issue of AJN, Timiya Nolan and colleagues explore the concept of spiritual distress and its impact on a person’s quality of life.

A topic that often goes unaddressed.

The authors emphasize the need for clinicians to actively screen for this problem and learn how to initiate conversations with patients. Clinicians are often reluctant to raise the issue of spiritual well-being, and thus wait for survivors to voice any spiritual concerns. While this approach is effective in some cases, if the conversation never occurs, the survivor’s spiritual needs may be unmet. […]

2020-01-16T10:15:37-05:00January 16th, 2020|Nursing, patient experience, Patients|0 Comments
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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