When offering help, she said, be specific about what you can provide to support the patient: meals; child care or elder care; transportation to and from treatments; companionship during doctor visits (especially helpful if you can take notes), tests or treatments; a sounding board, perhaps even in the middle of the night; a lunch date or fun outing; even a blank journal without instructions about what the patient records in it.
Dr. Harpham is the author of “Healing Hope: Through and Beyond Cancer,” among other very helpful books on living with and after cancer. Both she and Ms. Wolters caution against offering patients unrealistic advice and pie-in-the-sky predictions.
“The most ridiculous thing I heard was ‘The best thing you can do for your cancer is to stay positive,’” Ms. Nodjoumi said. “Does that mean if I don’t stay positive my cancer will come back?”
One patient told Ms. Wolters, “Sometimes I feel like I can’t cry or be mad because they think I’m not being positive.”
She wrote, “It can be too much to handle when a supporter is filled with unrealistic ideas of rainbows and unicorns regarding our diagnosis, prognosis or treatment. This is a crappy fight, and we are sick and we are tired, and sometimes your living in la-la land is more than we can take. We want to be positive, and we appreciate you as our cheerleader, but we also need realism.”
At the same time, Dr. Harpham suggests asking patients, whatever the status of their disease, what they are hoping for. Encourage them to focus on short-term goals, and ask if there’s some way you can help them achieve those goals. Guide them to talk about hopes they can do something about, and listen without interrupting, judging or trying to fix what they say. In all cases, she said, the underlying message should be “I hear you … I believe you … I am here for you.”
But never ask about cure. “Cure is just too big a word for most of us to feel comfortable with,” Ms. Wolters wrote. “As a patient who has been told there is no cure for her disease, the word remission feels like the heavens opened up and the angels sang; it really doesn’t get much better.”