Dear Iris,

I was recently diagnosed with head and neck cancer.  Since then, I have been to so many doctors. I think I’ve seen three types of oncologists as well as a nurse, a social worker, and others that aren’t coming to mind right now. As you can imagine, I’m having trouble remembering who does what and where I need to show up for my appointments. How do people keep track of all of these details?

T

Dear T,

Navigating a cancer diagnosis can be an overwhelming experience. One important thing to keep in mind is that those of us who work in the world of cancer understand how confusing the beginning stages of treatment can be.

With that said, sometimes we may forget to mention a detail or go over something too quickly. If that happens, don’t hesitate to ask us questions. To help you feel a bit more in control of all the information coming at you, I’d love to share a few tips that have helped my patients and their caregivers.   

1. Keep a list with contact information for your care team. This will help you easily know who to call when you or your family members have questions about your care. The easiest place to start is to make a list of contact information for your oncologists, specialists, support staff, and other clinicians that you see. Underneath each, you can add their name, practice address and phone number(s), and any other specific notes about how they’re supporting your health. 

2. Carry a copy of your calendar with you to your appointments. Some people prefer a physical calendar because they find it easier to add notes on paper. Others like adding appointments to their phone because of the alerts it provides. Regardless of which one you choose to track, having one will help you make sure there aren’t any scheduling conflicts and add new appointments as soon as you make them. 

3. Consider getting a binder. If you haven’t already, you’re likely to get a lot of written information about your diagnosis, treatment plan, side effects, and other details. A binder is a great tool to keep all this information in one place and easy to share with family members and anyone else you may wish to. 

4. Organize your digital files. Many test results and communication are delivered through email or secure links. You may want to consider storing all digital files — including your medication list, survivorship documents, scan results, etc. — in a shareable folder like Google Drive or Dropbox. You can also scan and store other documents here, including your health insurance ID card, so that everything is easily accessible when you need it. 

If the details are starting to overwhelm you, don’t be afraid to ask for help. It may be helpful to have a trusted person come with you to your appointments so that they can take in the information and help you stay organized. 

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