Although the field of psychosocial oncology had its roots in the 1970s, it wasn’t until 2007 that the Institute of Medicine acted on the growing data describing the impact of emotional well-being and physical recovery on quality of life, establishing guideline standards requiring that the psychosocial needs of patients with cancer be integrated into routine cancer care. Today, most hospitals have some type of social support programs for patients with cancer, but research indicates there are still wide gaps in quality and access to such programs.
A new book by Cynthia Hayes, The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer, may help to fill the support void by addressing the shock and multiple aftershocks of a cancer diagnosis in a head-on style, validating the rollercoaster of emotions and physical turmoil through the shared experiences of cancer survivors.
Title: The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer
Authors: Cynthia Hayes
Publisher: River Grove Books
Publication Date: February 2021
Cancer Survivor Offers Guide on Coping
Ms. Hayes comes well equipped to her endeavor, having spent 25 years as a management consultant, honing the interviewing and information gathering skills that underpin her solidly researched and well-written book. She also served as Chief Marketing Officer at Montefiore Medical Center in New York, where she matured her understanding of medicine and had the opportunity to build relationships with cancer professionals and other like-minded experts.
Of note, she is a cancer survivor whose own story began one day when she was in the midst of a mother-daughter outing to the neighborhood salon. Her cell phone rang, an unexpected call from her gynecologist explaining that her Pap smear had detected some atypical glandular cells, which called for more tests. Despite the pro forma assurances from her husband and friends that “everything is going to be fine,” Ms. Hayes had entered the land of uncertainty. And soon after an “excruciating” endometrial biopsy, her doctor called and told her she had cancer.
“The news hit with the force of a tornado, depriving me of air and upending my life…. The nightmare I’d kept under wraps for 2 weeks was real,” writes the author. Her cancer diagnosis and reaction are not dissimilar from others receiving such life-altering news, but rather how she used it to formulate a book may be different. She conflated numerous sources into a whole that looks at cancer through multiple stages of the disease, along with scientific notations that add robust information for readers.
Highlight and Dog-Ear
The Big Ordeal is organized into nine chapters, beginning, of course, with diagnosis and ending on an upbeat chapter, aptly named “The New Normal: When It’s Safe to Resume Life.” Each chapter highlights narratives of patients with cancer that include explanatory passages by the author and science-oriented sidebars that guide readers into essential content often overlooked in other books. Ms. Hayes writes with confidence, balancing difficult psychological and medical issues in a voice that will please both professionals and lay readers—not an easy task. Her nook is meant to be a guide, and she suggests that readers take each chapter when it is relevant, not reading too far ahead, and keep a highlighter at hand to mark special areas for reading again or sharing.
The Toll of Treatment
Cancer is a deeply personal disease, and Ms. Hayes has the personal skills to enable vulnerable people to open up and share their experiences. Some stories we may not want to hear about, but should, as they flesh out the serious underlying effects of not only the disease, but the treatments.
For example, a patient with cancer named Jane had a radical hysterectomy for cervical cancer. She told the author that her “lymph system went haywire, and I was dripping lymph fluid from my surgical wounds for months. Plus, my doctor removed my cervix and shortened my vagina in the surgery, making sex extremely painful. I’m glad to have recovered from cancer, but I wish the doctors were more sensitive to these issues.”
In chapter 7, Ms. Hayes does a deep dive into end-of-life issues. As she notes, one-third of those receiving a diagnosis of cancer will die of the disease within 5 years—a grim reality that she takes on with care and data-based knowledge.
“Ms. Hayes writes with confidence, balancing difficult psychological and medical issues in a voice that will please both professionals and lay readers—not an easy task.”— Ronald Piana
Tweet this quote
One patient she interviewed, a former pharmacist who was also a black belt in competitive judo, had a 10-year battle with neuroendocrine cancer. It gradually took over his life, in cruel increments, letting him have time to face his slow decline and loss of independence. “I have near-constant abdominal pain, diarrhea, and bone thinning, which has taken judo away altogether…. You can’t prep for a cancer death; there are no muscles to train.”
Delicate but Honest Conversations
Each death of cancer is a personal journey, a lonely time in which mortality is faced minute by minute. It is a difficult setting, and the author deals with it from every possible scenario, which will offer as much guidance as possible to caregivers, often sitting at their loved ones’ bedsides and wondering what to do and what to say. To that end, she provides a terrific Q&A sidebar, covering the most crucial aspects of end-of-life care, such as when to initiate conversations about dying or patients’ main goals as they move from curative to palliative treatment and eventually hospice.
Readers will appreciate the frank, knowledge-based discussions, which are some of the best parts of this worthwhile book. Thanks to our advances in detection and treatment, Ms. Hayes, like millions of others, now see cancer in their rearview mirror. “Things just start to feel normal again, whatever that might be, and life goes on.” This book, an important guide for the cancer community, is recommended for readers of The ASCO Post and their patients.