On Jan 2, 2016, my mom went into the hospital for tests, that evening she was told she had brain cancer. Two weeks later biopsy came back and she was diagnosed with glioblastoma. We went through a 11 week journey of confusion, appointments, treatments, suffering and hospice. Here is what I learned:
Everyone has an opinion…wait for the facts
During the first few days of my mom’s diagnosis, we received several differing opinions as to what my mother’s diagnosis was…from benign tumor to primary brain tumor to malignant tumor. It took the family on such an emotional roller coaster. Many deliver such news as coolly as ordering a latte. Picture a scene out of House, a team of doctors offering their educated opinions. My advice is to try to ignore and wait for the biopsy and facts to come back.
You are no longer a spouse, child, sibling … you are now an advocate.
When a loved one gets sick, you must now be their advocate. Regardless of what your relationship was, you must become their voice. They are no longer in a position to provide for their own needs. They are now weak and will often be ignored or told to wait. Medications will be delayed. You will need to be the eyes and ears as well. Become familiar with their medications. Know what medications are being prescribed and educate yourself. Mistakes can and will be made.
People will surprise you. Both negatively and positively.
Unexpectedly, some people will disappear and some will show up.
Cancer specialists have little regard for holistic care.
This lesson was extremely frustrating for me. When questioned about supplements and diet, a radiation oncologist actually said to be careful not to eat too healthy. That many people diagnosed with cancer want to start eating well…but too many antioxidants can actually hinder radiation treatment. WHAT? So don’t eat well? I researched this and this theory was debunked over a decade ago. When the neuro-oncologist was questioned about turmeric, a spice that has been found in studies to actually kill this particular cancer, he replied “I wouldn’t mess with any of that stuff.” Another oncologist’s response was that he couldn’t speak about that because it was “alternative.” Asked about massage/acupuncture… Can’t hurt but won’t help was the attitude.
Just because you are covered for something doesn’t mean you will get the service.
After rehab, my mother who had right leg paralysis was sent home. I was assured that she wouldn’t be sent home without a plan. (That was another thing I learned… people will tell you what you want to hear.) She was covered through Medicare to have skilled services, PT, OT, Nurse, etc., as well as 20 hours per week home health aide. Well, it took a full week for a nurse to visit us to do an “intake.” We hardly received an aide. After all said and done, we had an aide 4 or 5 days out of the five weeks under their care. That’s 20 hours of help total when we were covered for 100 hours. After a hospital visit, it took another full week for a nurse to come and do a re-intake. Lesson here is to be a squeakier wheel.
People don’t do their jobs… you need to follow up.
This was a bit shocking… it seemed every time we turned around someone dropped the ball. My dad’s saying became “no one does their job.” From paperwork not being sent, to prescriptions not being prescribed, and referrals not being made, we had to follow up and remedy situations almost constantly. I learned to follow up before it became a problem.
Our healthcare system lacks empathy
We were provided with such little information on what to expect. We navigated this all on our own. ICU, which stands for Intensive Care Unit, is a torture chamber. I sat for 6 hours with my mom and there was no chance of her getting any rest. And this was the neurology ICU. Unless a patient was is a medically induced coma, no one was getting rest. Between beeps and alarms from patients’ monitors (which all staff ignored anyway) and staff loudly participating in conversations… patients were not getting the care they needed. I learned about a syndrome called “ICU psychosis,” in which patients literally go crazy from their stay in ICU. These are our most critical patients…and their treatment is making them psychotic. Our system is broken! One thing I can say is it was INTENSE. And ironically, there was a sign on the door that said “Shhh, patients healing.” As if it was the visitors who were causing commotion.
From there my mother was sent to rehab while we waited for biopsy results. This particular brain injury rehab unit had construction going on below patients’ rooms. Literally hammering and drilling under patients’ rooms… patients with brain injuries. Corporate wants trump patients’ needs again.
People will advise to ‘say it now.”
Say what now? If you have something in any relationship that needs to be said… don’t wait until they get sick! Seriously? They are sick… they don’t really want to hear your shit now.
Live life Now… it can change in a second. Make the most of everyday. Love your loved ones…every day.