We Don’t Just Have Cancer. We Have a Whole Life to Live.

This post originally ran on KevinMD.com – Click Here to view.

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.

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.

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.

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.

All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://elephantsandtea.org/contact/submissions/.