By Amy Kalman, RN
I remember watching the expression on my Mom’s face while we were out for dinner at a local restaurant: the waiter took my order without a pen and paper. She cringed. I prayed he’d remember our entire order; that I like extra ice or that she likes sauce on the side. Prior experiences have told me that he’ll forget some detail, only because he didn’t take the time to write down our request. He got the order right, thankfully, but I felt some risk was experienced watching him only listening.
I’m not sure if you’ve had the same restaurant experience, but I’m sure you’ve had a ‘to do’ list or a shopping list for the supermarket so you don’t forget any of the important items you’ll need to make through the week, or at least next 24 hours. My guess is that you use these tools to keep track of all that you need to function in your day-to-day life with minimal aggravation.
Do you have a medical ‘to do’ list? Or a notebook to keep track of results from blood work, CT Scans, MRIs, and questions you’ve prepared for your next visit? Documentation of your vital signs? List of all of your physicians and their phone numbers? Names and dosage of your chemotherapy, side dishes (incl. anti-nausea, steroids, antibiotics, etc.), radiation dosage, and otherwise regularly scheduled medications and medication allergies? Prior medical and surgical history?
Though your doctors and nurses may take wonderful care of you, the complexity in development, diagnosis, and treatment of cancer can be overwhelming. The mind tends to remember more information, especially if increased in complexity, when it’s written at the same time as learning. Lack of information regarding your health may bring a sense of comfort, but knowledge is power. Having all of your own information organized into a single place that’s easy to access and transport will give you the ability to manage your own health and be a part of the decision making process regarding treatment.
While a notebook or binder (one that holds pages to accommodate CD’s with test results is a great addition) certainly can’t control the growth of cancer in your body, but it can give you a sense of control in the course of treatment. You don’t need anything complicated or with too many pockets — think about your kitchen’s ‘junk drawer’. Creativity may strike and inspire you to create space for the tidbits of advice you’ll pick up along the way from cohorts in treatment, or a simple place to doodle while keeping busy in a waiting room. Keep in mind the essential function: making your current medical information immediately available to you and your caregivers.
During the treatment process there are moments you’re forced to surrender and have faith that you will achieve your final outcome of survival. But in the moments where control is possible, you have the opportunity to learn about your body, the science of cancer and its treatment, and feel that you are just as important a member of the treatment team as the nurse, radiation therapist, support staff, and physicians.