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Hope is a curious thing. It’s about looking forward to something positive and refusing to give up. It’s about persisting in the face of adversity, even when the odds and the facts seem to be working against you. It’s about creating positive energy that can nourish both body and soul.
Interviews with 86 personal caregivers who cared for 107 patients ranging in age from 2 to 92, from 19 states, with more than 40 different cancers, and interaction with dozens of local families affected by cancer revealed that sustaining hope in the face of cancer is both critical and problematic.
All of these caregivers agreed that you aren’t your cancer, and that looking beyond the cancer to envision a new normal was key to their hope.
Their six guiding lights were to:
u Set realistic goals. Is the feasible objective to become cancer-free, prolong life despite cancer or help relieve patient pain and anxiety as death approaches? The more realistic the goals, the more likely they are to inspire hope, even if the patient is terminal.
u Live life while you have it, and create joy every day. No matter how sick, the person you’re caring for will always appreciate a surprise. Maybe it’s a bouquet of the first daffodils of spring, the opportunity to snuggle with a favorite pet or even a single chocolate-covered strawberry. Creating pleasure for the person with cancer creates positive and hopeful memories for both of you.
u Preserve perspective. Rob’s wife admits she was having a meltdown about his chordoma diagnosis when she “read about a guy who was killed when his all-terrain vehicle flipped over. I looked at Rob and I realized he’s here right now, and he has a chance, and he feels good, so I can’t dwell on poor me when people can lose a loved one in a flash.” For Carl’s wife, it was about focusing less on what they had lost – independence, control and their normal life – when Carl lost a leg to bone cancer, but more on what they had left. “He couldn’t control losing his leg, but he could control what he does with the rest of him. We just applied our own optimism; instinctively, we wanted to get on with it and not get stuck.” For both, regaining perspective took deliberate choice.
u Cultivate humor. Many caregivers found that humor was an important stress reliever, even toward the end of a patient’s life. When he knew he was dying, David told his sister he’d given up buying green bananas. It was black humor, but it lightened the mood. Less morbid humor can be generated by playing games to create captions for cartoons or watching a funny movie together.
u Manage information to your advantage. Know what you’re dealing with. For many patients, information was a source for hope. It might have been clarity about the diagnosis, treatment options or a physician’s depth of expertise treating a particular type of cancer. A physician’s candor about the potential consequences of each option and the range of outcomes he’s achieved stimulated hope, even in the most serious of situations.
Mimi was a Stage 3 pancreatic cancer patient whose options were limited after two years of rigorous chemotherapy and radiation. Committed to evidence-based medicine, she found a transplant surgeon willing to do ground-breaking 20-hour three-team ex vivo resection surgery removing six abdominal organs so he could remove a deadly tumor that was wrapped around several of her blood vessels and vital organs. Once Mimi knew what she was dealing with, her rigorous research created optimism. The first person in the world to experience this surgery, Mimi is alive and well today, one year after making medical history.
u Make deliberate choices when accessing information. Several patient/caregiver teams found that they each had a different appetite for data, and so one would become a data fiend, while the other kept more distance and only accessed the broader data about the disease and its prognosis when specific information was needed. They preserved hope by being selective.
Interpret data cautiously. Several patient/caregiver teams decided that statistics about the broader patient population with a particular diagnosis weren’t necessarily relevant to them. This wasn’t denial; rather, it was recognition that every projection of aggregate survival rates includes a full range of outcomes, some more desirable than others. René and his wife said: “The survival facts [the doctor] gave were tough, so we decided to ignore them because he didn’t say that was true in 100 percent of the cases. Whatever the low percentage is who live longer, we decided that we’d be in it. Now we’re at four years, so it’s working.”
u Forestall later regrets. Almost every caregiver described trying to do everything possible to ensure they’d have no regrets, no matter how the course of treatment ended. That meant not only going through the normal routines of treatment, but also pressing for management of side effects like pain and nausea to increase patient comfort and expressing love for the patient every day.
Hope isn’t restricted to survival situations. Mike and his wife lost his battle with pancreatic cancer more than 13 years ago. Her dedication to his care and her passion for seeking out clinical trials and breakthroughs in treatment gave him hope and options that kept him alive for 27 months in the face of a diagnosis that offered a six-week death sentence. She describes their experience as a victory, in spite of his death, and she’s been a passionate advocate for cancer research funding ever since.
Decisions about when a patient will die, and where, are part of creating hope for loved ones. As Tim’s wife said, “We had to be ready because we had to go on. There was a point where it’s all about the people who live. It’s not about the person who dies. It’s about what will make it OK for the ones who live.” Orchestrating the readiness of children for such an outcome is part of this planning.
The Russian author Fyodor Dostoevsky said “to live without hope is to cease to live.” Hope feeds the courage to keep going during challenging and uncertain treatments. It’s what allows family cancer caregivers to carry on every day. It’s what allows people like Mimi to undertake unthinkable treatments, and it’s what allows exhausted caregivers to heal in the aftermath.
Deborah J. Cornwall is the author of “Things I Wish I’d Known: Cancer Caregivers Speak Out.” The book is based on interviews with 86 cancer caregivers, patients and survivors. For details, visit www.thingsiwishidknown.com.