This is truly a book I wish I’d had years ago.
The aptly-titled Things I Wish I’d Known: Cancer Caregivers Speak Out, by Deborah J. Cornwall, is a welcome resource for those struggling to help the people they love who have cancer.
My grandmother, mother, father, and wife all had cancer. My mother was a caregiver for both her mother and my dad; I helped with all four. My parents and wife recovered, though my dad was housebound and disabled for the remaining nine years of his life.
Cornwall, meanwhile, has had her own experiences with cancer. Her mother-in-law died of breast cancer at a young age, and the author herself was diagnosed with breast cancer 33 years to the day after her mother-in-law’s death. Cornwall recovered. Her experience, she says, including extensive volunteer and consulting work with the American Cancer Society, led her to write this book. She contacted and interviewed many caregivers of persons with cancer, and created this guide to help them.
Cornwall does a good job describing what caregivers, as well as patients, go through, and what one can do to stay afloat during the grueling process. The caregivers in her book mention a void after death — but there is also a void after a successful outcome. You spend all your time and energy in the fight to overcome cancer and it becomes your center. When that fight is done, you are left seeking a new center. The people in this book share ways to do that, and to commit to living life to the fullest. Hearing it in the voices of the caregivers themselves is particularly powerful.
After old age and dementia, cancer is the third leading reason for caregiving. To that end, Cornwall quotes Rosalyn Carter: “There are only four kinds of people in this world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” No two experiences are the same, either—I know this from my own caregiving, and Cornwall knows it, too. “There are over 100 different types of cancer that can arise in nearly any part of the body,” she writes. Even people with the same type of cancer getting the same treatment may react very differently.
What can make things especially hard for both the patient and the caregiver is that many of those with cancer had no history of the illness in their family, Cornwall reports. Being diagnosed with the disease seems to be some kind of random event that hits out of nowhere. The caregivers she interviews include children, spouses/domestic partners, relatives, siblings, and friends. Those with cancer range in age from two to 90, with 40 different types of cancer, and the different caregiving paths Cornwall writes about last from a short four days to a long 23 years. About half of the patients of the caregivers she interviews had a successful remission and went on to live a cancer-free life.
The book approaches the daunting, unpredictable task of caregiving in a step-by-step way, with each step clearly explained and most often in the words of caregivers themselves. It covers all aspects of the journey, beginning with getting a clear diagnosis, which may not be easy. Problems can occur because of symptoms, such as fatigue, being attributed to other causes. This can be especially true when the person has no family history of cancer and also does not have any behaviors associated with increased risk. Many of the patients in this book never smoked and had been athletic. Cancer was just not something anyone would suspect.
Cornwall also writes about the person who may have a rare cancer that local physicians have not seen before. At times, she tells us, caregivers had to work hard and really push to get a correct diagnosis. “Working through the diagnostic tests and waiting for results was the hardest part for many caregivers,” she writes.
The book also provides testimony from caregivers on how they gathered information to help make informed decisions about treatment. This is crucial. There may be times when the patient is so distraught that they have difficulty making those decisions and need someone they love and trust to help. Choosing your treatment team is crucial, and Cornwall goes into detail. There are many factors to consider: experience with the type of cancer and outcomes, the chemistry you have with the medical staff, whether to go with a local hospital or a major cancer center, whether to get second opinions, and whether it is time to change physicians. Every decision potentially has life or death consequences. As Cornwall writes, caregivers learn the ins and outs of the medical system including privacy issues, legal issues in decision making, and especially how to advocate in a way that will be heard among medical staff.
For those who need resources, Cornwall lists them extensively. She cites patient navigators in hospitals, as well as many websites that give information on such things as free lodging when a treatment center is far away from home. Financial issues are covered as well, including insurance, prescription drugs, employment, and important record keeping. Cornwall also talks about creating a healing environment. A person does not need to be defined by their cancer. She provides guidance about what to say and how to be when you are with people with cancer and those who care for them. Since cancer can strike at any age, there is an extensive section on children and cancer—both when children are the patient and when they are in the family of a person with cancer.
A very important and sometimes overlooked aspect of caregiving is taking care of oneself. Caregiving stress can potentially take as many as ten years off the life of a caregiver, according to a study at the University of California. The people Cornwall interviews speak of many ways to self care. They also share how they dealt with the aftermath of the cancer, regardless of the outcome. If your loved one dies, there is the void, the grief, and sometimes visions of the one lost. But, again, there is a void even if the outcome is that the patient is cancer-free.
No matter what, being a caregiver means going on a very rocky journey — and Cornwall’s book is a thoughtful and excellent travel guide. It will give you ideas of how to cope and how, even in the darkest most frightening moments, to find your way to grace and resilience.
Things I Wish I’d Known: Cancer Caregivers Speak Out
Bardolf & Company, October, 2012
Paperback, 258 pages