The Ultimate Brain Tumor Starter Kit

Yes, you heard me correctly.  You are probably thinking what kind of a nut is she? This is my first Brainstorm Blog, our first conversation, and hopefully one of many.  As I thought about the best topic to start with –hands down, it was the Starter Kit.

I will never forget the day life as I knew it changed forever.  The day my husband Dave “presented” with a grand mal seizure.  I remember how overwhelming it was.  It was the first of many hospital visits, doctors’ appointments, MRI’s, surgeries, treatments — you know the drill.  I discovered four things that can alleviate much of the stress immediately.

  1. A business card holder.
  2. A CD case if you’re using CD MRI’s or an art portfolio if you’re using films. (or both)
  3. A small tape recorder and tapes.
  4. A binder with paper, a hole puncher and a folder insert.

Let your fingers do the walking!  As you go from internist, to neuro- oncologist, to neurosurgeon, to radiation oncologist and so on, they will all want to send each other reports.  A small business card holder with all of their contact information will save you from having to hunt later for details and make unnecessary calls.

Never leave home without it!   Your MRI that is.   Keep them organized in a CD holder or an art portfolio so your doctors can compare the films side by side.  This helps them to evaluate the situation for themselves and not just go by the radiologists reports.

It’s Greek to me!   As you pursue multiple opinions, it can be hard to comprehend everything the doctors say.  The vocabulary, the tumor type, the differences in approach and all of this happens when you’re at your emotional worst. You have just received the news that you or your loved one has a brain tumor.  Ask if you can tape record the meeting.  I was very fortunate that not one doctor turned me down.  After making the rounds, ask someone to transcribe the tapes for you.  Then you can look at them side by side and objectively evaluate the options.

The Holy Book. Once you have the tapes transcribed, put them in your binder immediately.  The binder is also a home for test results, MRI reports, notes and anything else you need to keep.  It will be in one place and easy to access.

When will you have time in the midst of all the chaos to shop for these things?  If you can’t pick them up quickly, or order them online, let one of the people who ask you, “Is there is anything I can do to help?” do it.  Say YES — let them help!   (That’s a topic for another blog.)  These simple tools will reduce stress and unnecessary work significantly.  Some of you might use the APPs on your smart phone for these functions – but I am pretty certain that most of you will be more comfortable with this method.

If you have used a technique relating to this topic that works -please share it by leaving a comment.