The Human Side of Cancer: Living with Hope, Coping with Uncertainty by Jimmie C. Holland, M.D. and Sheldon Lewis
Overview
When receiving a cancer diagnosis or hearing that a loved one has cancer, the range of emotions is huge and constantly changing. It is from this perspective that author Dr. Jimmie Holland and collaborator Sheldon Lewis address the psychological experience of cancer in their book, The Human Side of Cancer: Living with Hope, Coping with Uncertainty. Dr. Holland, a psychiatrist at Memorial Sloan-Kettering Cancer Center for over two decades, is a pioneer in the field of psycho-oncology. Sheldon Lewis is a medical journalist and a senior editor at Healthy Living Magazine.
How the Book is Organized
The book is broken into chapters based on different questions and areas of concern that cancer patients and their families may face while navigating a cancer. Individual stories and quotes are dispersed among concise tidbits of information, professional reflections, and insightful suggestions to integrate into your own life. There is also a rich list of resources, an easy to navigate index, and an interview with Dr. Holland at the end of the book.
Chapter 1 – What Is the Human Side of Cancer?
“The human side of cancer is all-encompassing; it’s about you, your surroundings, and your experience of the illness. It’s based on the kind of person you are; the meaning to attach to the illness; the specifics of your illness in terms of its stages, symptoms, and treatment; social attitudes; and the availability of support from others…”
Remembering a time when cancer was referred to as “the big C” and not named in public discourse, Dr. Holland invites the reader to feel comfortable in their own skin and their own situation as they are navigating the diagnosis of cancer for themselves or their family members. She shares her professional journey as she came to understand that it is imperative to address and consider the emotional experience that is underway during the physical treatment and manifestation of the disease. In her mind, emotional wellbeing is just as essential a symptom to address as is blood pressure and white blood cell count.
Chapter 2 – The Tyranny of Positive Thinking
“You need to find your own comfort level with the mind-body-cancer connection, based on your temperament, your natural way of coping, and your belief system. That approach should be respected by your family, your doctor, and others who support you through the cancer experience.”
Taking away the personal responsibility for cancer, Dr. Holland emphasizes that people should not blame themselves for inflicting cancer on themselves, nor feel like they need to be positive all the time in order to “beat it.” There is no universal attitude that works when trying to address the disease – both optimistic and pessimistic, spiritual and cynical, depressed and upbeat people can heal and struggle with cancer. However, she emphasizes that there are approaches towards life that can help to support a personal experience of coping with the disease.
Chapter 3 – The Mind-Body Connection and Cancer
“My best advice to you for now is to take a rational and reasoned approach. Take news reports with a wait-and-see, grain-of-salt attitude. Don’t rush to change your general approach to coping with cancer. Good attitudes and good access to support, including groups, can help.”
There is an endless flow of questions that come up when confronted with a cancer diagnosis. This chapter addresses a few commonly asked questions that often come up for Dr. Holland in her practice: “Did my personality or emotions cause my cancer? Did the stress I was under alter my immune system and cause my cancer? Did grief or a loss cause my cancer, and could it make the cancer come back? When I get down and depressed, am I making my tumor grow faster? How important is support from others? How can I make my treatment work?”
Chapter 4 – The Diagnosis: “I Could Die of This”
“Surely, there are as many ways of coping as there are people, but the key is to be certain that the diagnosis doesn’t paralyze you into inaction and the inability to seek treatment.”
Receiving a cancer diagnosis is typically met by a general pattern of response. The first stage is of denial and disbelief, where it does not register as reality at first. The second stage is the turmoil phase, which may include hopelessness, helplessness, and a sense of vague calm, all of which are normal and not a reflection of “going crazy.” The third stage usually comes when treatment begins and one starts to do something about the diagnosis. Holland emphasizes that although the process is not easy and some anxiety may be present even going to have symptoms checked out, addressing these challenging emotions head on and asking for help if needed is the most productive and healthy way of dealing with it.
Chapter 5 – Working Together
“…[C]ommunication is a two-way process; you can control more of it than you think 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. Be organized and prepared to give the medical facts clearly, and make it clear that good communication, including attention to your emotional well-being, is essential to getting the care you want. Also make it clear that you will take responsibility to make it happen.”
Both the doctor and the patient have to be invested, responsive, communicative, and responsible in order to create a positive and productive experience. On the part of the patient, there is much that you can do in order to shape your own experience.
Chapter 6 – Coping
“Your personality traits affect how you behave, not how your cancer behaves.”
Not everyone is a fighter or constant optimist, and that is okay. You have permission to be yourself while also being aware that there are certain personality traits and life factors that can support or challenge the coping process. Dr. Holland shares some tips for how to best cope with cancer, such as reach out for help when needed, rely on your own coping style, keep a personal notebook of symptoms and appointments, and don’t blame yourself or see it as a death sentence.
Chapter 7 – The Human Side of Cancer Treatments
“You have probably received much information about the physical side effects of cancer treatment, such as fatigue from radiation or nausea and vomiting from chemotherapy. The psychological side effects usually are not described, however, so they may come as a surprise to you if they happen… It’s better to be prepared so that if you do develop some of the symptoms, you will be better able to deal with them.”
Depending on your own past experience and emotional state when facing different cancer treatments, the emotional toll of the anticipation and side effects can be great. Dr. Holland explores the psychological side effects of surgery, chemotherapy, radiation, immunotherapy, bone marrow transplantation, and clinical trials in this chapter. She stresses the importance of not suffering in silence and making sure that you ask for help of friends, family, or professionals in order to tolerate the treatments as best you can.
Chapter 8 – The Human Side of Specific Cancers
Each kind of cancer has its own unique problems, treatment, and questions that arise with diagnosis so while this chapter addresses specific kinds of cancer experiences, there is definite overlap between the different types. Dr. Holland offers a few helpful suggestions for coping with breast cancer, including asking questions before entering treatment to know what to expect, relieve anxiety before making important decisions, speak to others who have been through the treatment, and involve your partner in appointments.
Chapter 9 – All Medicine Doesn’t Come in a Bottle: Psychological Treatment
“You may be an extraordinarily good coper or you may find you have trouble just making it through some days. Either way, coping with cancer taxes your ability to the maximum.”
Looking beyond the physical treatment of cancer symptoms, Dr. Holland explores approaches such as individual and group counseling, cognitive-behavioral techniques, relaxation, meditation, prayer and spiritual practices, art and music therapies, creative writing, and medication that can help with the psychological challenges that arise. There is not a one-size-fits-all way of doing things and people can benefit from being open to changing their own therapies over time to best suit their evolving needs.
Chapter 10 – Alternative and Complimentary Therapies
“Many a patient has said to me, ‘I just believe it works, and that’s good enough for me.’ And that’s good enough for me, too, when what they are doing isn’t harmful, and they are also getting their regular cancer treatment. Using whatever ‘it’ is fits comfortable into their belief system, and because it does, it offers hope and contributes to the quality of their lives, as well as to their confidence in a good outcome to treatment.”
There is an ever-growing interest in cancer therapies that go beyond what the medical establishment has to offer. While scientific evidence oftentimes is unavailable to back up such approaches, Dr. Holland offers that the most important thing is that the patient feels good about what they are doing and it does not interfere with the conventional treatment. She offers some guidelines to navigate this process, such as to discuss your therapy with your doctor, seek out reliable sources of information, and think about your reasons for seeking out complementary therapy.
Chapter 11 – “I’m a Survivor – Now What?”
“The questions we have been studying about the human side of survivorship can be placed under the larger topic of ‘quality-of-life’ issues: How well are you able to function in physical, psychological, social, work, and sexual terms, compared with how you functioned before your illness?”
Once treatment is over and the next stage of life begins, there are many new and lingering questions that arise. When does the term “patient” turn into being “survivor”? What is the meaning of this experience and how can I use it for good? Survivors and their families have to figure out how to re-enter life away from the schedule that was dictated by the cancer, assuming new and old identities and responsibilities at home, work, and life in general.
Chapter 12 – Staying Healthy
“The cancer diagnosis and treatment of one family member create a significant opportunity, which can be grasped by the entire family, to initiate healthier lifestyle changes to prevent cancer.”
Surviving cancer opens a new chapter in prevention – doing what you can do not develop the disease again. Healthy lifestyle choices such as exercise, managing alcohol intake, tobacco use, diet, stress, excessive sun exposure, and sexual transmitted diseases are some things that we do have control over. Following up on routine check-ups and assessing new symptoms is also crucial in ensuring a healthy body as well. While habits can be hard to change for the better, reaching out for help in the form of a support group or individual counseling can make a big difference.
Chapter 13 – The Goal is Control
“Cure may not be possible with today’s knowledge, but effective control of the tumor, often for years, has changed the outlook. The human side becomes the challenge of how to live well with a chronic medical condition, how to continue to undergo treatment while maintaining the activities that are important in life… Juggling all these elements, including helping your family to adapt to all the changes, requires an emotional resiliency and maintaining a sense of hope.”
Despite the hard reality of a cancer recurrence, there is still hope and a wide range of treatments that can help make cancer more a chronic disease that needs to be managed. It can be devastating and disheartening to receive that news and it is important to speak to your doctor and support system to move forward. Dr. Holland offers some suggestions and reminds the reader that there is no right way to react.
Chapter 14 – The Last Taboo
“People at the end of life have a right to a broad approach that gives them full care for all their needs: attending to their distressing physical and psychological problems, helping them to strengthen their ties to others, and ensuring that their spiritual needs are met…My fervent hope is that one day soon, exploring the meaning of life and death will not longer be taboo.”
Death is not often talked about in an open, nuanced, and gentle way. Many existential questions arise that are not easily answered, perhaps not at all. There are many ways to approach finding meaning at the end of life – psychological, spiritual, philosophical. While not easy, all of these have the potential to bring out great healing and closure for both the person who is ill and their surrounding friends, family and support network.
Chapter 15 – The Family and Cancer
“[The] search for meaning is a task for family and friends and especially the primary caregiver of a person with cancer. They experience the cancer illness of a loved one with a range of emotions and activities, including empathy, comforting as much as possible, sharing decisions, being advocates, and providing physical and emotional support. Despite role changes, stresses, and distress, the positive feelings of ‘being there when it counts,’ and the sense of doing all one can for a loved one more than outweigh the stress of caregiving.”
It is hard to talk in general about how cancer impacts the larger family experience because each family member, cultural background, and specific situation is so unique. However, Dr. Holland explores some of the general patterns and issues that most people go through. These include questions such as genetic susceptibility, caregiving, financial logistics, and filling in as advocate. She also emphasizes the need for caregivers to remember their own health and need for support while showing up for their loved ones during their cancer journey, a topic that is often forgotten.
Chapter 16 – How Do I Go On?
“Our last thought as we leave you is that there are as many ways of grieving as there are ways of loving. The two are inextricably linked. Hold dear each of these many ways.”
Grief is a universal part of the human condition. As Dr. Holland reflects, “how we deal with it has a lot to do with how we put the loss into a broader perspective that allows us to continue to live despite the engulfing void in our lives.” Looking at the wide scope of grief, from anticipating it to processing the death of a loved one, this chapter touches on the complexity of grief in a gentle and accessible way.
Epilogue
After over twenty years of speaking to people dealing with cancer and exploring the nonphysical dimensions of their experiences, Dr. Holland certainly has a lot to share in this book. In summary, she notes three main takeaways for the readers:
- Do not internalize remarks that you may have brought the cancer on yourself or that the mind-body connection is so powerful that you can simply think your way in or out of cancer.
- There is more than one way to deal with cancer and it does not have to be exclusively positive. Everyone needs to find their own way that works best.
- Feel comfortable reaching out for the help you need– it is a sign of strength to admit that you need extra support. Thankfully there are many diverse kinds of resources for psychological support out there so it is likely that you will be able to find one that suits you.
Recommendation
The Human Side of Cancer is a rich resource that touches on a wide range of topics. It can serve as a guidebook from diagnosis across many different scenarios of care, decision making, and outcomes. Most importantly, it normalizes the psychological challenges that patients and families face when trying to navigate their way through the engrossing experience of cancer. It offers a range of personal anecdotes and concrete suggestions that are very encouraging over the course of what may be a long journey.
The book is 344 pages long.
Reviewed by Helaine Alon, ZBC Communications Coordinator
