A Family Member Becomes An Empowered Patient

My earlier blog was about the moments that cause the start of the empowered patient.  Today, a family member had that moment.

I have two aunts with lung cancer.  One has been diagnosed for two years.  She has been getting chemotherapy during this time.  The cancer is gone but something else is wrong that no one can identify.  It acts like a syndrome called chemo brain.  It is a horrible post treatment side effect.  The symptoms can vary from fuzzy thinking to memory lapses to difficulty multi tasking.  It can last short or long term.  There is not much to be done for it except hope it resolves.

My aunt’s symptoms are much more profound with rapid onset.  My uncle said she went from normal one day to difficulty speaking, organizing thoughts and walking with it being worse starting late afternoon.  My aunt is a brilliant artist.  The oncologist ordered an MRI after two weeks of symptoms.  A appointment for result was made for five days later.

My uncle is a quite man, an artist and photographer.  He is humble, hard working and kind.  He has trusted the medical community.

At the oncologist visit, they were told everything was normal, the MRI and blood levels.  The oncologist then proceeded to tell my aunt and uncle since he was an oncologist and my aunt was no longer getting chemo, he was not going to see them anymore.  Perhaps they would like a referral to Hospice? This is the “BYE, BYE, Don’t let the door hit you on the way out” speech.

My uncle said, but what is the problem?  The doctor didn’t know and wasn’t going to help solve the problem.  Is she dying?  That was not made clear because the cancer is gone , their is no metastasis, labs and brain MRI are normal.  Why is my aunt experiencing these symptoms?  My uncle has had his moment of healthcare system failure. He realized  with the help of his patient advocate niece, he had to find the answers.  It was the only hope.

I’d like to think the doctor was much more compassionate in his communication.  It doesn’t matter because my aunt and uncle only heard and translated to me, the events as I described.  This not a disparaging of oncologists because many go way beyond traditional care.  Unfortunately, in this case, it didn’t happen.  My aunt has been left to die even if that actually isn’t the only diagnosis available.