How Keep All Your Medical Information Organized Through Cancer Treatment

Phyllis Johnson Health Guide
  • You've just been diagnosed with cancer.  What's the first thing you need to do?  Buy a notebook!

     

    OK, maybe not the very first thing,  Cry.  Tell your family.  Do some reading.

     

    But early in your new life as cancer patient and survivor, you will need to get organized.  You are going to have to keep track of appointments, insurance information, lab results, and questions.  Some people use a big loose-leaf binder with sections to keep track of all of this, but those people were probably born organized and don't need my advice.

     

    Organization is a problem for me, so when I was starting my life as a cancer patient, I quickly got overwhelmed by all I had to remember. Before cancer I could keep everything in my head with a few notes scribbled in my calendar or on scraps of paper as reminders.  However, the stress of cancer, the medications, and the sheer volume of information were too much for my memory, so I finally bought a small spiral notebook, about 5" by 8".  It fit in my purse and went everywhere with me.

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    What will you need to write down?

      

    Contact Information.  The front of my notebook had doctor's names, addresses, telephone and fax numbers.  I also made a note of the names of nurses and receptionists as I talked to them.   A primary care doctor, a surgeon, an oncologist, and a radiation oncologist were all taking care of me as well as a few extra specialists who dealt with new problems that cropped up.  Each new doctor seemed to want my medical history and the contact information for previous doctors. 

     

    Medical History.  I didn't actually write my medical history in the notebook.  I typed it out on the computer and kept a couple of copies in the back of my notebook.  When I saw a new doctor, I had all of my medication information, dates of previous surgeries and so forth ready to hand them.

     

    Questions.  As you think of questions, pull out your notebook and write them down right away.  I paperclipped my question page.  Then before the doctor left the room, I checked my list and made sure we had covered all of my questions.  I also made a note of his answers.  My husband and I were amazed at how often we sat in the same room and heard the same information, yet came away remembering different scraps of information.  It helped to have those notes.

      

    Appointment information.  Where do you need to go for that lab test?  Do you need to fast?   Who is the referring doctor?  Will you need to take the lab orders with you, or will the doctor fax it over?  Write down the name and phone number of the person who set up the appointment.  All too often I arrived for a lab appointment only to be told that they didn't have the doctor's orders.  I could refer to my notebook and say, "Judy told me that Dr. So-and-so would fax them.  Here is her phone number."  Sometimes it turned out that the doctor had forgotten, and sometimes it was the lab who found the orders once I gave them those clues about where to look.

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    Insurance contacts.  I found dealing with insurance people one of the most stressful parts of having cancer.  I would often be in tears by the end of a phone conversation regarding my benefits.  I learned to start a conversation by getting the name of the person on the other end of the line.  I asked them to spell their name for me, so that they knew I knew their name.  I wrote down the time of the call and the information covered in the call.

     

    Soon I had a paper trail.  At the start of the fourth call on the same topic, I could give dates, times, and names of the people I had already talked to.  This yielded two good results.  The new person could find the pertinent information.  He also knew that I was an organized (Ha! If he only knew!) and determined person who couldn't be put off.  When I needed to file an appeal about a denial of services near the end of my treatment, I had all the information I needed right at my finger tips.  My appeal succeeded.

     

    Everyone is different, so my notebook method may not work for you.  Share your tips for organizing information.  I'd love to hear how other people manage.  The important thing is to keep notes and write the information you need in a place where you can find it easily.  Having that data handy will save you all kinds of frustration.

     

    Next: Writing Your Way Through Cancer, Part II: Sharing Your News

     

Published On: March 09, 2009