The Human Side of Cancer: Living With Hope, Coping With Uncertainty
The Human Side of Cancer: Living With Hope, Coping With Uncertainty
Written by Jimmie C. Holland, MD, and Sheldon Lewis, this book focuses on the "human effects" as opposed to the "physical effects" of cancer, and is written as an imaginary conversation with the reader: "I wish I could sit with you and talk about what’s been going on for you and how you’ve been coping…But since that’s impossible, I’ve tried through the chapters of this book to talk with you as I would if you were in my office."
Dr. Holland is professor of psychiatry at Weill Medical College of Cornell University and chair of the department of psychiatry and behavioral sciences at Memorial Sloan-Kettering Cancer Center in New York City. Her scientific contributions through her pioneering work on the psychological aspects of cancer have shaped the discipline of psycho-oncology over the past 2 decades. Mr. Lewis is a journalist with a special interest in the human side of medicine.
Through this book, Dr. Holland’s considerable talent and expertise are made available to cancer patients, family members, and caregivers. There is also a wealth of invaluable information for the "physical" cancer specialist, both in the guise of the illuminating observations and perspectives of the authors and through patients’ comments that are more likely to be heard in the mental health professional’s office than in the oncologist’s office.
The common mythsthat emotional stress can cause cancer and a positive attitude can cure it, and that people can bring cancer upon themselves through some character "weakness"are examined in their unconscious dynamics:
When misfortune strikes, it is a natural human tendency to search for a reason. The ready explanation is often ‘he must have brought it on himself.’ This reaction is similar… when someone is mugged. … ‘What were you doing in that neighborhood, at night, anyway?’ This response is part of a bigger psychological picture: … By blaming the victim, we get a false sense of security that we can prevent events that are beyond our control.
The insidious consequences of such beliefs are also clearly outlinedfor example, promoting isolation and alienation by placing on the patient the additional burden of being expected to "be positive," delegitimizing the fear and sadness that are part of a normal human reaction to the diagnosis of cancer.
Particularly detailed and insightful is the account of the psychological events patients experience when they are in the prediagnosis, diagnosis, treatment, and posttreatment phases. Such descriptions are followed by practical and helpful suggestions as to how people may best handle their emotional reactions to these distressing experiences. Useful checklists of symptoms that usually require professional help are included. The combination of Dr. Holland’s scientific and technical knowledge with the wealth of insights from people who have actually had cancer brings to the reader a unique set of tools to deal with the mundane (but inescapable) aspects of managing the practical tasks of living with cancer as well as the deepest existential enigmas that confront humans facing their own mortality.
The following summary of the book only begins to illustrate the richness and complexity of this work.
In Chapter 1, the authors identify crucial times in the natural history of cancer when the emotional burdens peak and patients often require psychiatric support. This is followed by a description of Dr. Holland’s family background and the development of her interest in the psychological and behavioral aspects of cancer: "Whenever I read a book, I first want to know something about the author so I can better judge the book’s contents and its reliability. For this reason, I feel you have a right to know where I’m coming from."
In Chapter 2, entitled "The Tyranny of Positive Thinking," and in Chapter 3, "The Mind-Body Connection and Cancer," the authors examine common assumptions and beliefs about cancer and affirm the uniqueness and legitimacy of each person’s coping style.
Chapter 4 is dedicated to the key issues of the emotional barriers that prevent many people from seeking medical help when a suspicion of cancer arises through self-observation of new and worrisome symptoms. Advice on how to handle anxiety and avoid delay in consulting a physician is provided. The emotionally trying period between testing and confirmation of diagnosis/initiation of treatment is also covered in the latter part of this chapter.
Chapter 5 deals in a practical and straightforward manner with the delicate topic of the patient-physician relationship and underlines patients’ and families’ demands that physicians communicate with their patients in a sensitive manner: "You have the right as a patient to expect your doctor to be competent, to be assured that he or she is knowledgeable and technically skilled. However, you also have a right to expect caring and compassion from your doctor."
The authors provide a list of helpful suggestions on how to prepare for and handle the visit with the physician so as to ensure that the patient’s information and emotional needs are satisfied. They also recommend that patients introspectively assess how many details about their condition they wish to receive and recognize how they may best succeed in assimilating the information. "Communication is a two-way process; you can control more of it if you present your problems, thoughts, and wishes clearly, indicating whether you are someone who likes to have all the facts or just the facts needed to make decisions." The chapter ends with an outline of patients’ rights as formulated in New York State and patients’ responsibilities as presented at Memorial Sloan-Kettering Cancer Center.
Chapter 6 deals with coping. Personality traits that tend to facilitate or hinder coping and signs that the individual’s coping ability is being seriously challenged and requires professional intervention are identified.
The psychological side effects of cancer treatmentboth in general and as related to specific cancersare covered in Chapters 7 and 8.
Chapter 9 deals with counseling (including sexual counseling): "If you have had a sexual problem after cancer treatments, you know how hard it is to bring up the topic with the doctor. And you also know that the doctor rarely asks if you have any sexual concerns." Problem solving, mind/body techniques (including meditation, deep breathing, muscle relaxation, and creative techniques such as art therapy) are also explored. At the end of the chapter, medications used to treat anxiety, depression, and other forms of psychological distress are reviewed.
Chapter 10 provides a comprehensive overview of alternative and complementary therapies, and an assessment of the benefits one can realistically expect from those interventions.
Psychological problems related to survivorshipsuch as dealing with uncertainty regarding the possibility of a relapse, prognostic information, permanent disabling side effects of curative treatment, work and insurance issues, and sex and fertility after cancerare addressed in Chapter 11.
Chapters 12 and 13 are focused on staying healthy, cancer screening, cigarette smoking, alcohol and cancer, weight and obesity, sun exposure, and living with cancer as a chronic illness.
Chapter 14, entitled "The Last Taboo," addresses the physical, psychological, social, and spiritual aspects of dying. The authors describe the crisis of meaning that the imminence of death can induce with the help of some thought-provoking quotes from Arnold Toynbee (in our society, "death is considered an affront to every citizen’s right to life, liberty and the pursuit of happiness") and Daniel Callahan ("The meaning of death is…relegated to the privacy of religious beliefs or, in their absence, whatever personal resources people can bring to [it] on their own"). In Dr. Holland and Mr. Lewis’ words,
We live in a culture that extols rugged individualism and a philosophy of life that says you can accomplish anything you set your mind to. And we infer that includes beating your own death. It is little wonder, then, that people are unprepared when an illness, like cancer, strikes with its potential threat of death. The result is a crisis of great proportions: one must confront not only biological death, but squarely what it means not to be alive.
The role of the counselor is accordingly seen as that of the helper facilitating the patients in finding their own meaning in the "psychospiritual" crisis precipitated by their illness. The authors clearly indicate their uncompromising expectations of the standard of care for the dying: "end of life care...should be as aggressive at treating pain and suffering as the treatment that was aimed at cure."
Chapter 15 addresses family and caregivers’ issues such as the caregiver as advocate, the family and genetic risk, and the positive aspects of being a caregiver. In Chapter 16, the grieving process is reviewed (patterns of grieving, grief before and after loss, grieving over years, dimensions of grief). The book also contains an extensive list of resources for people with cancer, their relatives, friends, and caregivers, covering cancer in general, specific cancers, and other topics such as aging, alternative and complementary therapies, bone marrow transplants in children, pain management, palliative/hospice care, bereavement, prevention, survivors, transportation, and books for adults or young readers.
This book should be empowering to cancer patients, their families, and caregivers. It is, however, a book for the sophisticated reader. Cancer patients and families of patients who possess the linguistic expertise needed to penetrate the lucid but at times complex prose of Dr. Holland and Sheldon Lewis will probably relate to its content immediately and benefit from the myriad strategies, tactics, and tips on how to handle the external and inner realities of having one’s life touched by cancer.
The book may present a challenge for some physicians who, by reason of training, have developed the intellectual keys to the language of the book but also a deep-seated resistance to exploring the humbling depths of the human experience of cancer and death. The willingness and courage to overcome that resistance will be rewarded by an illuminating perspective on the journey that cancer patients endure. Indeed, this book should be part of the library of everyone who is involved in the care of cancer patients.