Preparation first key

Any doctor visit is taxing–even when you are in good health. At least they were for Jane and me. And once you have a cancer diagnosis and appointments that are not ten minutes from your door, things get worse. The key to easing some of that stress comes down to prior preparation and then following through when you get there.

Good preparation is critical.

When I go to the doctor, I always go with a written list of questions, a notepad and a pen. Like most people, I get nervous in the presence of those white coats. If I don’t have my questions written out, I know I’ll forget to ask something I’ll regret later–like making sure to get a refill order for my prescriptions.

Cancer complicates things

My medical issues are pretty straight forward compared with any cancer. And NET cancer is about as complicated as cancer gets, at least in my mind. In addition, I wasn’t keeping track of things for myself; I was trying to make sure I understood what was going on for Jane.

…I know I’ll forget to ask something…

That meant spending time the night before talking over her experiences over the past days or weeks. I needed to know what had changed in her body. We needed to figure out what questions those things raised, both in her mind and mine. You don’t always get those things from routine conversation or daily observation. For example, I went to work every morning. I couldn’t tell how many bowel movements she had in the course of the day.

Finding the truth

And Jane was very good at hiding her pain and increasing lack of mobility. Any cooking or organizing she did took place during the day. I knew she went up and down the stairs, but only saw her difficulties on them when we went out together. I observed constantly, mind you. It just wasn’t enough.

…NET cancer is about as complicated as cancer gets…

In some senses, our conversations the night before an appointment became a rehearsal for that appointment. I asked the same kinds of questions I knew Jen would ask the next morning. Sometimes what she told Jen was very different from what she told me. I had to call her on it when she understated something. Jane didn’t always appreciate that.

Honesty and equality

But my job required her doctors have the most accurate information we could provide them. Love sometimes requires a toughness we’d like to avoid. Fortunately, Jane understood that most of the time. Caregiving is built on love and trust. You have to nurture that constantly. Maintaining honesty is part of doing that.

Jane didn’t always appreciate that.

But it is difficult–especially when you’ve been equal partners from Day One. Over time, caregiving can shatter that equality if the patient becomes increasingly unable to make their own decisions. With NET cancer, as the disease evolves, that increasingly becomes the case.

Two kinds of questions

Knowing accurately your partner’s physical and mental condition is only part of the preparation. The other is coming up with the questions that need asking and answering. You have one set of questions going in: Can I keep walking every day; why hasn’t the medication addressed the swelling in my legs; what does this sudden dizziness when I get off the toilet mean?

Caregiving is built on love and trust.

But other questions arise because of the conversation with the doctor. Part of that derives from the fact doctors often speak in medical terms rather than human ones. I remember one of Jane’s mother’s doctors who seemed to think everyone in the room had a medical degree, including Jane’s mother who had not graduated from high school.

Understanding doctor speak

Jane often understood her doctors better than I did. She taught biology and chemistry and understood how the two things related to each other. I was an English major. I dabbled in the sciences, but not at Jane’s level–and certainly not at the level of her doctors. And I had to understand what they said because Jane relied on me at home to know what needed doing.

…doctors often speak in medical terms…

Fortunately, I don’t mind asking seemingly stupid questions. I’d rather ask until I understand than pretend I do. As one of my students said, “Stupid people don’t ask stupid questions. Smart people do.” It’s a mantra for good journalists–but also a mantra for good caregivers. We have to understand what a doctor tells us with a good level of certainty. Ask until you understand.

Take notes

I carry a notebook with me everywhere I go. It’s a habit I picked up as a young journalist. Caregivers need to make sure they always have one with them as well. First, it’s a place to write down questions and observations as they come to you between doctor visits. The night before an appointment, you organize those things so you won’t miss getting them into the doctor’s head the next day.

…a mantra for good caregivers.

During the visit you take notes on everything: weight, blood pressure, test results, examinations, observations, recommendations. You check off each questions as it gets asked and take notes on what you get for an answer. You write down other questions as they occur to you from what the doctor says. And you record those answers as well. Before you go out the door, you need to check to make sure every question got an answer you understand–and that you left nothing out the doctor needed to hear.

Discuss what you learned with each other early

Ideally, you should be able to reconstruct the entire appointment accurately from your notes. And you want to do that with the patient as soon afterward as you can to make sure you both heard the same things. Your notes will likely be more accurate than their memory, however. And those notes will help you understand how things have changed since the last visit–or the first visit.

…take notes on everything…

From doctor visits we get the information we need to have to take better care of our partners and make better decisions down the road about treatment options. Good preparation is critical. Don’t neglect it. But remember, you have to do all of this and be emotionally and physically supportive at the same time.