When asking about a potentially overwhelming side-effect of an impending new medication, my nurse told me, “Don’t worry until you get there.”
OK, I get it. I just didn’t die from breast cancer. I’ve had worse. But come on. Let’s do better. Let’s have a conversation.
There are many things nobody tells you about cancer. Nobody tells you that cancer is a full-time job. We are not just navigating our cancer care — a complex and lengthy continuum … across time, providers, clinical and home settings.
But we are doing this in the context of the life that we already have: partners, children, careers, numerous other responsibilities. In addition, a large proportion of the U.S. population suffers from economic hardships, making it challenging, if not impossible, to show up for appointments and treatments. I recently went to get my one-hour infusion at an academic medical center downtown where I get my treatment. I left my house at 8 a.m. and returned at 4 p.m. Did I mention, the infusion takes one hour?! If you’ve ever been a patient (or a provider for that matter) at an academic medical center, you don’t even need to ask why it took that long.
I mentioned this to a friend in a phone conversation on the way home — a friend of high socioeconomic status, with a well-paying job. She said, no way in hell would she be able to devote a whole day to this. That day, I didn’t do my job and paid for childcare for my two kids. I’ve had many days like this already — 54% of my business days in the last year, to be exact. I do not understand how a single mother, working minimum wage could pull this off. She wouldn’t show up. Hence, disparities in survivorship.
Nobody tells you about all the side effects. Sure, too many to count. But some are pretty common. I often hear a powerful statement from my fellow breast cancer survivors: “Why didn’t anyone tell me about…” Even the most empowered of patients — armed with information, willing to ask questions, and speak up — end up feeling blindsided by surprises that could have been mitigated with a conversation with their care team.
No one told me about chemo brain, for instance. Chemo brain refers to cognitive impairment that patients experience during and after chemotherapy. Historically it has received little research attention with evidence being largely anecdotal. But now, with more people surviving cancer, that is changing. There is a need to include conversation regarding chemo brain as part of patient education to support expectation management. Expectation management! If I had known, I would not have been surprised and may have planned accordingly — driving, working, just functioning out in the world.
Strong patient communities such as Breast Cancer Social Media (#BCSM), Young Survival Coalition or Breast Cancer Straight Talk can be not just a great source of support, but of information. However, many of us may not be pointed to or discover (or be open to) these incredible sources until well into our cancer journey.
Health care needs to do better at contextualizing care within a person’s life context — eliciting barriers and challenges on the front end and proposing mitigation strategies and solutions. Something as simple as: “You may not be able to drive towards the end of your chemo, so plan accordingly.” Instead, I got: “Don’t worry, most patients work through chemo.”
We don’t just have cancer. We have a whole life to live.
Health care providers: Please ask me who I am. Ask me if I have small children. Ask me what I do for a living. Ask me about my support system. Ask me about my commute. Please tell me about the anticipated challenges, and be willing to talk about the unanticipated ones. And most importantly, listen. Do not pull the wool over my eyes. I will find out. It will be that much more devastating to face my life’s responsibilities if I do not know what to expect.
“I respectfully disagree,” I said to my nurse, “please share with patients information that might be relevant to their functionality so they can manage expectations and plan accordingly.” “But, we don’t want to overwhelm you,” she said. Indeed, clinicians have traditionally assumed this paternalistic role of withholding information from patients with the best of intentions.
Well, some of us want to know. We want to be the ones to decide how much information we get. Please, ask us. Decision making cannot be “shared” if the patient is not informed. It takes a conversation to work towards a collaboration, partnering, teaming between patients and providers, the key to person-centered, safe, and appropriate care.
Elizabeth Lerner Papautsky is a psychologist.
Image credit: Shutterstock.com
