By Kathy LaTour

I have compared the day of my cancer diagnosis to moving to a foreign country where I didn’t speak the language or understand the customs.

Although I had a master’s degree in communication‚ I was overwhelmed by a new vocabulary and the number of decisions that had to be made based on information that I did not have and could not possibly find in my diminished emotional state. I was the information person in the family‚ and‚ while family members tried to help‚ they too were at a loss. My husband at the time was wonderful with support—but his priority was our 1–year–old daughter and taking over for me with all the other family tasks.

As friends began hearing of my diagnosis and asking what they could do‚ at first I said nothing. I really didn’t know. I was overwhelmed. Then one particularly knowledgeable journalist friend said she had been researching some things and asked if she could send me the information. At once it hit me. Give them assignments.

Organization Is Needed
The information began pouring in—along with phone numbers‚ doctors’ names‚ book suggestions‚ instructions‚ etc. The paper was everywhere.

I agreed‚ but was incapable. My usual journalist’s ability to sort and sift and toss had been replaced by immobilization. I couldn’t bear to part with any scrap of paper for fear I might need the information—indeed‚ that my life might depend on the information. Within days she had helped me arrange a three–ring binder with sections that had headings such as Questions‚ Doctors’ Appointments‚ Notes‚ Chemotherapy‚ and Plastic Surgery.

“Organization is needed‚” declared one friend on the way to a doctor’s appointment‚ when she saw my bulging file.

In the front of the notebook she had copied some calendar pages that gave me 1–inch blocks in which to write appointments and other notes. All the paper given to me by doctors was in the appropriate place‚ and she had neatly listed all my doctors and their phone numbers on the inside front cover. One tab was red‚ indicating emergency procedures for all possibilities. It was exactly what I needed. It went with me to every doctor’s appointment and was a constant reference point for the next year when I needed to remember what happened when. I added a section for insurance information as that process began and ultimately started a second binder for insurance alone.

Becoming a Caregiver
I put the binder concept into action again a few years later when I joined my siblings in becoming caregivers for my 72–year–old mother and her breast cancer journey. For her‚ the notebook was critical since she often couldn’t remember where she was supposed to go or why. The notebook went with her to appointments‚ where we each made her notes and action items. We could refer to the binder and notes made by our siblings at the last visit.

When she went into the hospital‚ the binder went with her—and we added a new section for visitors. Since there was a constant flow of people in and out‚ we asked each person to sign in like a visitor’s book and then record what happened when they were there. Often‚ it was a friend who was visiting when the doctor showed up‚ and he or she made notes to the rest of us about what was said. We were able to see who had been there while we were away. When mom reached heavy doses of morphine for the pain‚ she seldom responded to any of us. So‚ it was remarkable the day I got to the hospital to read a note from a family friend who had stopped by to visit. She said that mom had awakened and had a wonderful‚ lucid conversation with her in which she said she was fine and not afraid to die.

The idea of a cancer notebook has now been adopted in many forms. You can find them at bookstores and online with printed pages telling you what information you need to gather. Or you can create your own with a spiral notebook or a three–ring binder.

Managing the information of cancer provides a sense of control.