Some people wonder, what exactly about brain cancer kills the patient? In some cases, too much of the brain is so consumed with recurring tumors. In other cases, the body is unable to withstand the battery of treatments, and the immune system shuts down. I read somewhere that 70% of patients actually die of infection because of immune system failure. Or maybe there are other complications associated with treatments.
I think some patients die of frustration trying to coordinate their medical care.
To be fair, I must acknowledge that I do have some good things to say about my medical team. For example, my neurologist is very knowledgeable, very skilled, very organized, and is also a man of great faith and compassion. He offered a beautiful prayer for me during my recent appointment. And he and his staff really stay on top of things. His staff was amazingly skilled at getting me appointments for my MRI, EEG, and initial consult with the neurosurgeon with astonishing speed.
My neurosurgeon is also highly skilled. He also remembered things that were important to me, like preserving my musical ability. He took great care to protect that part of my brain. He was very sympathetic when he told me my diagnosis and prognosis. And when we are face to face, he always takes time to answer all of my many questions, and never makes me feel like any question is dumb. His staff is very nice when I am in the office. BUT - since my post-op appointment, I have had a series of frustrating communication failures with my neurosurgeon's office.
During my post-op appointment I specifically asked about protocol for contacting the neurosurgeon for questions, medication issues, etc. He said, "Just call my office." I also asked about things I should be on the watch for, and he said that basically any increase in headache or seizure activity, or any noticeable personality changes, should be reported to him.
The following week I had a day that was worth reporting. I had a couple of episodes that reminded me of my seizures, but I wasn't sure what they were. There was no deja vu and no phantom smell, but the same overwhelming sick feeling was happening. In addition, I was really feeling what seemed like textbook depression. Although it was a predictable effect of the steroids being tapered off, it was a change worth noting (as well as discussing to see if there should be any change to my medication). I called the office and the live person put me into a voice mail system. I left a message saying that some things were happening that were supposed to be reported, and I asked for a call back. No one called back. I left another message for the next day. No call back. Ever. Good thing it wasn't an emergency. Just cause for stress over whether things were okay or not. And no opportunity to get relief from the suffering I experienced.
Also, in the post-op appointment I was given the names of the recommended neuro-oncologist and radiation oncologist. I was told that my records were being sent to these doctors, and that they would be contacting me to start January treatments. Since neither of them contacted me this week, I called them today, because I am anxious to know WHEN in January these treatments will begin. When I called, I found out that the reason these oncologists hadn't contacted me was because neither doctor had received my records. Both doctors could see me early next week, and I was told that yes, I should definitely come in very soon. I made an appointment on Monday with the neuro-oncologist and on Tuesday with the radiation oncologist. BUT - they both need my records from the neurosurgeon, and they both want my MRI films (which currently reside with my neurosurgeon). They emphasized the need to make sure they get these records and films in time for my appointment.
I called the neurosurgeon's office and spoke with his assistant. I explained the need for records and films for these upcoming appointments. I even offered to come by the office on Monday morning to pick up the records and films so that I could carry them to my Monday appointment. "I'll find out if the MRI films are available and call you back," she said. But she didn't. I faxed a letter to the neurosurgeon's office, requesting the records, emphasizing the urgency of the records, and requesting: 1) please fax or courier the records in time for the appointments; 2) let me know if I need to pick the films up; and 3) call me to confirm that the records have been sent. I received no reply. I faxed the letter again. Again, no reply.
As a result, I get to spend the weekend stressing over whether my appointments with these oncologists will be cancelled or rendered ineffective because the records and films were not available. I get to worry about whether this will delay my much-needed treatments, and whether that delay will make my prognosis even worse. I get to anticipate how I will wrangle with the office staff on Monday morning (assuming I somehow even get through to a live person) and get anything accomplished. Since I am dependent on someone else to drive me, I get to figure out how to ask them to take me to the neurosurgeon's office for the possibly futile effort of chasing down and waiting for copies of records on the way to the oncologist's appointment. I get to debate whether it's appropriate to call on the emergency line and page the on-call doctor tonight or during weekend hours to make another plea for records.
I remember watching a movie years ago, called "The Doctor", which was about a doctor who became ill and had to learn what it was like to be a patient. I wonder if these staff members have any idea what it is like to be a patient dealing with a complex medical problem under such frustrating circumstances.