front cover of A Cancer Companion
A Cancer Companion
An Oncologist's Advice on Diagnosis, Treatment, and Recovery
Ranjana Srivastava
University of Chicago Press, 2015
Cancer. It’s the diagnosis no one wants to hear. Unfortunately though, these days most of us have known or will know someone who receives it. But what’s next? With the diagnosis comes not only fear and uncertainty, but numerous questions, and a lot of unsolicited advice. With A Cancer Companion, esteemed oncologist Ranjana Srivastava is here to help, bringing both experience and honesty to guide cancer patients and their families through this labyrinth of questions and treatments.

With candor and compassion, Srivastava provides an approachable and authoritative reference. She begins with the big questions, like what cancer actually is, and she moves on to offer very practical advice on how to find an oncologist, what to expect during and after treatments, and how to manage pain, diet, and exercise. She discusses in detail the different therapies for cancers and why some cancers are inoperable, and she skillfully addresses the emotional toll of the disease. She speaks clearly and directly to cancer patients, caretakers, and their loved ones, offering straightforward information and insight, something that many oncologists can’t always convey in the office.
 
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Children as Caregivers
The Global Fight against Tuberculosis and HIV in Zambia
Hunleth, Jean
Rutgers University Press, 2017
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Chronic Pain and the Family
A New Guide
Julie K. Silver M.D.
Harvard University Press, 2004

Chronic pain is the leading cause of disability in the United States, affecting as many as 48 million people in this country alone. It can demoralize and depress both patient and family, especially when there is no effective pain control and no hope for relief. Improperly managed, chronic pain can lead to substance abuse (usually painkillers) and to acute psychological and emotional distress. Pain begets stress and stress begets pain in a wretched downward spiral.

Silver reviews the causes and characteristics of chronic pain and explores its impact on individual family relationships and on the extended family, covering such issues as employment, parenting, childbearing and inheritance, and emotional health. Silver treats aspects of chronic pain not covered in a typical office visit: how men and women differ in their experience of chronic pain, the effect of chronic pain on a toddler's behavior or an older child's performance in school, the risks of dependence on and addiction to pain medications, and practical ways for relatives beyond the immediate family circle to offer help and support to the person in pain.

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Chronicling Idiopathic Pulmonary Fibrosis
A Collection of Personal Stories
Sara Whisenant
Michigan Publishing Services, 2016
Receiving a diagnosis of Idiopathic Pulmonary (IPF) can be an intimidating experience.  And it can be difficult for new patients to ask hard, personal questions in clinic.  But these powerful stories, written byIPF patients and fornewly-diagnosed IPF patients, are where those hard questions are answered.  That makes this book a must-read for newly diagnosed patients, their families and loved ones.  
 
In “Chronicling Idiopathic Pulmonary Fibrosis:  A Collection of Personal Stories,” you’ll hear the voices of real patients and family members as they talk about what worries them, the coping techniques they have tried and the bright spots of beauty they have found in the course of their journey with this disease.  Readers will learn what IPF is and what it is not.  They will find new resources and even some questions to help guide their own thoughts when reflecting on what an IPF diagnosis means to them.

The author is grateful to the FRIENDS of the University of Michigan Hospitals Patient Education Library for their generous support of this book.  Proceeds from this book will be used to improve the patient experience at the University of Michigan Health System.

 
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Close to Me, but Far Away
Living with Alzheimer's
Burton M. Wheeler
University of Missouri Press, 2001

Each day Burt Wheeler is plagued by the same question. When did it happen? If he could pinpoint the beginning, then he might begin to make peace with himself. He vividly remembers when the doctor diagnosed Kee, his loving wife of over fifty years, with "Alzheimer-type dementia." But, as hard as he tries, it's impossible for him to determine when his wife's dementia started. He remembers her bout with depression, but that, he thinks, was surely due to her breast cancer. There was their dream vacation to Greece when Kee seemed so tired and indifferent. There were the unopened books, when reading had always been such a source of pleasure to her. And, he recalls, the gradual personality changes with friends, and even with family.

Wheeler started writing this book as a form of self-therapy when he found himself thrust into the role of caretaker to his wife--a role for which he felt unprepared. He wrote in memory of the very special woman his wife had been—a wonderful mother, charming and gracious, as well as a deeply respected psychotherapist. She was also his best friend, and he loved her. So, to some degree, this is a love story—a story about two people who have shared life's ups and downs for over fifty years. It's also about commitment.

In Close to Me, but Far Away, Wheeler provides insight into what a caregiver's day is like, as he shares his most intimate thoughts with us. The book provides a window into the author's personal life as he seeks to confront his own ineptitude and the occasional despair he feels as he deals daily with Alzheimer's. He also touches on the question of what keeps him going through times of exhaustion and frustration. Part of his answer lies in holding tenaciously to memories, and part lies in what he believes is a human's extraordinary capacity to continue plodding along simply because he must. Wheeler also believes in rejoicing in the beauty that can be experienced, and he believes in humor, humor achieved only by distancing ourselves from the events that so deeply engage us. And, of course, there is also the indefinable nature of love.

Alzheimer's is a terrifying and horrible disease, as much for loved ones as for the patient. Those who are caregivers or friends of Alzheimer's patients or caregivers will empathize with Burton Wheeler's story. And some might receive comfort from his words or learn from him. Because Alzheimer's is a disease that could affect anyone, Close to Me, but Far Away is a story that should be read by all.

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Coming to My Senses
One Woman's Cochlear Implant Journey
Claire H. Blatchford
Gallaudet University Press, 2014
Deafened at the age of six, Claire Blatchford was educated orally with speech lessons, speechreading, and hearing aids. Though successful both professionally and domestically, at the age of 67 Blatchford decided to undergo a cochlear implantation. In this memoir, she describes in prose and verse living with a cochlear implant for the past three years.
 
     At first, Blatchford feared losing the last of her hearing through the surgical process. Her audiologist explained that her hearing was worsening and that soon she would move from profound deafness into a state called “cosmic deafness.” Blatchford decided upon the surgery in hope of meeting her hearing family on their turf, and of again hearing the wind, rain, rivers, and crickets. After being implanted, however, she realized that amplification and comprehension were two different things: at first, all she heard was a soup of sound, a condition known as being brain deaf.

     Blatchford soon learned, however, that regaining her hearing was a journey of discovery. Gradually, the sound soup gave way to the ability to hear some sentences without speechreading. The sound of her own voice surprised her, and she could hear her grandchildren speak. The thrill of new things heard on one car trip to a friend’s house moved her to “try my first yodel as I pass by your house.” When asked by others if they should receive an implant, she cautions that it is an individual decision that each deaf person must make. For her, it was the right decision.

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Complex Sorrow
Reflections on Cancer and an Abbreviated Life
Marianne Paget
Temple University Press, 1993
"The author's multiple voices--scholar, sociologist, victim--provide an academic, yet personal, professional, yet poignant, story....Readers face...the 'contradictory meanings' that an especially articulate woman brings to the final chapter of her life." --Women and Health In 1988, Marianne Paget published the Unity of Mistakes: A Phenomenological Interpretation of Medical Work (Temple) in which she argued that error is an intrinsic feature in medicine--an experimental and uncertain activity. Her subsequent research focused on medical negligence and on miscommunication and silence a as cause and product of error in medicine. While pursuing her research on negligence, she found out that she was an example of it. Chronic back pain that had been misdiagnosed as muscle spasms turned out to be a symptom of a rare and fatal cancer that claimed Paget's life in December 1989. This collection of her personal and professional writings on the phenomenon of error in medicine chronicles a young scholar's courageous struggle to make sense of a tragic coincidence. Discovering that she was living the charges and painful topic that she had studied so deeply, Paget write poignantly and analytically until the last week of her life about this uncanny parallel. "It is very tricky to come to terms with the reality of death without becoming trapped in that reality," wrote "Tracy" Paget to her friends. In this book, she describes "the odd way my life began to mirror my work"; her search for "life rites" when face with tasks involving wills, last rites, and farewells; and her indomitable and forthright attempt to remain intensely alive in the face of death. A Complex Sorrow, her final project, comprises essays, letters, and a journal recording her last year. Ever critical of the distanced and dispassionate stance taken in much social analysis, Paget had experimented with performance as a form for enlivening social science research. The script for her play, "The Work of Talk," about communication problems between a physician and his cancer patient, is also included. Her compelling life-text speaks to those living with illness and those who care for and about them, as the investigation and representation of lived experience. Excerpt Excerpt available at www.temple.edu/tempress "Strangely, my knowledge of error has helped me deal with the errors in my care. Had I not known about the prevalence of error in medicine I would not have been able to process what has happened to me without bitterness. But I had thought these matters through already, and more than once. I now live out the complex sorrow I have before described." --Marianne A. Paget Reviews "Paget's book is stunning. It's a tribute to the invulnerable human spirit. The woman burned like a flame; obviously she died well, because she lived well; she was loved because she was loving. The book is tremendously sad, but it isn't depressing; somehow, one is left with a sense of human possibility." --Joan Cassell, author of Expected Miracles: Surgeons at Work
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front cover of Confronting AIDS through Literature
Confronting AIDS through Literature
The Responsibilities of Representation
Edited by Judith Laurence Pastore
University of Illinois Press, 1993
This anthology offers readers an array of viewpoints on the use of literature to confront AIDS as a social, literary, and medical phenomenon. A substantial annotated bibliography allows readers to pursue other fictional, biographical, poetic, and dramatic works on AIDS, ss well as criticism and analysis of AIDS writing.
 
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A Crown of Hornets
Marcia Pelletiere
Four Way Books, 2019
Pelletiere’s poems convey a visceral sense of the poet’s harrowing recovery from brain injury after a car – truck accident that altered her experience of both body and language.
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