Many cancer survivors cling to it. But how do we define it?
by Laurie Steffen, PhD
Four people are facing illness. One has just learned that medical treatment has done all it could. One is nearing his sixth month of hospitalization while waiting for a transplant. Another is in end-stage heart failure. The fourth one’s cancer is back and has spread. And all of them hope. Their family and friends hope. Their capacity for hope is humbling to witness and has changed the lives of people close to them, including those of us who’ve had the privilege of treating them.
Hope is a pervasive word in the context of cancer. Though, perhaps, it is too often equated with cure. What the people above knew, and what research suggests so many people know if we ask, is that hope among cancer survivors is much more than hope for a cure.
People facing illness hope for many things: to live as normally as possible, to improve valued relationships, to stay as independent as possible, to leave a legacy, to “get through” treatment, to do everything they can to improve their health, to die a peaceful death, for loved ones to live well going forward. It seems the things we fear that illness will take away are the very things that create opportunities for hope.
So, what is hope?
Even from a secular or nonspiritual perspective, hope means a lot of things to different people, including researchers. A useful starting point is to consider whether to think about hope as a noun or as a verb. As a noun, hope tends to be something either we have or we don’t. As a verb, hope is something we do.
Hope is a pervasive word in the context of cancer. Though, perhaps, it is too often equated with cure.
Some research suggests that one of the main ways we do, or act, with hope is to think about what it is we want in the future. Envisioning a future that we want to work toward builds a bridge between a difficult present and a desired future. The way we cross that bridge is to set goals, plan for some potential obstacles, and create new goals when a goal is blocked. Research suggests that these actions – setting goals that matter, thinking about ways to reach them, and devoting effort to pursuing those goals – may promote better quality of life during cancer.
Want to think more about this idea of hope? There are a couple of things to consider. First, it can be hard to think about goals when facing advanced cancer. Thinking about goals brings the future, and therefore the likelihood of experiencing unwanted negative emotions like fear or worry, into the room. Second, sometimes the word goal brings to mind too much of a focus on achievement or competition. But, if you’re OK knowing that negative emotions might show up, and you can separate the word goal from any negative connotations involving achievement, you can begin to explore this idea of hope.
How do we find hope?
Start by thinking about the areas of your life that matter most to you. Is it work? Relationships? Spirituality? Community? Think about the values you hold. What do you want to be present in your life even if side effects are bad, treatment schedules are burdensome, or your cancer progresses? Once you have a sense of your priorities, you can start to think about the goals you want to work toward. These goals can be anything – projects around the house, seeing friends, keeping a grateful heart, or bringing a list of questions to the doctor. List as many goals as possible without judging them as “good” or “bad.”
Think about the values you hold. What do you want to be present in your life even if side effects are bad, treatment schedules are burdensome, or your cancer progresses?
As you think about your goals, your mind will probably start to tell you what the obstacles to reaching these goals are. Perhaps fatigue is an obstacle to a particular house project. Maybe treatment schedules are making it difficult to attend a long-held lunch date with friends. Contemplating these potential obstacles can help you figure out what you need to do to make sure they don’t get in the way of reaching your goals. Do you need to enlist the help of others? Do you need more information? Thinking through these details can help you be more effective in pursuing your goal. When an obstacle arises, you will already have a way around it in mind.
If you find that a goal is not feasible, you might ask yourself what it was about that goal that made it so important in the first place. What did that goal say about you? What area of life was it in? It is very likely that there are other, more feasible goals you can pursue that speak to those same values.
Share your goals (and the potential obstacles) with others. Let the people in your life know what you want to do and what you’re worried will get in the way. Let your medical team know what goals matter to you. Let them know what you’re trying to do and what you’re afraid will keep you from doing it. If they know your goals, they will be in a better position to help you pursue them. They can often help you overcome common obstacles cancer poses. Using services such as physical therapy, occupational therapy, palliative care, or rehabilitation can be very helpful in managing treatment side effects, rebuilding physical strength, restoring balance, and learning how to modify your home to make activities easier. Your medical team is with you and wants you to pursue the things in life that matter most to you.
What I have learned from people facing illness is that, above all, there are important goals to pursue even if cancer progresses or treatment fails. And that makes hope something that cannot be taken away.
Dr. Laurie Steffen is a postdoctoral fellow in the Department of Social Sciences and Health Policy at the Wake Forest School of Medicine in Winston-Salem, NC. She received her PhD in Clinical Psychology from the University of New Mexico.
This article was published in Coping® with Cancer magazine, September/October 2018.