Yesterday I attended this conference from 11 a.m. until about 4:30 p.m.via live streaming. The information was excellent, presented by well renown physicians.
My journal has many blank pages. There were days I wanted to write but the effort seemed too difficult. I was tired and thought that dying would be easy. Living sure can be tough. Doctors are frustrating. You seem to be a number without a voice. They assume that you will follow whatever they say because doctors are, in their minds, God.
The next to last time I went to Clearview Cancer building…the place with the rainbow, the doctor did not even know who I was. He finally looked at my chart and said, “oh, yes” whatever that meant.
I then stated that I had waited for one month to receive the results of the EUS. He said he called me. I pulled out my iPhone 6 and said that the phone captured every phone call and there was not a call from him. He would not look at me. I said “you are lying and I have lost respect and trust in you.” He looked at me then and asked if the surgeon had not called me. I said no he had not. He said “well, I tried. That counts for something.” I then stated that I was glad that I was intelligent enough to call Medical Records and pick up my own report and interpret it for myself. (The EUS was performed on the 19th of December and I left for Boston on the 22nd. Somehow I got it all done.)
He wanted, then, to send me to Birmingham for surgical options and I said I would prefer not to go to UAB, not liking the city nor the facility. He never heard me and had this scheduled. He then pushed through coverage for a shot that might or might not shrink my tumor, but essentially might keep it from growing. I would have to have this shot each month. However, the test for that treatment option had not been scheduled. So, I was to come back the next morning for this shot. That is what my $220. provided….
Remember, I came home from Boston on December 17 and was leaving for Mississippi on December 22, 5 days later which I explained. I said I wished to delay everything until after the holidays. No one heard this.
The next morning, I got into my 2014 Honda Accord
and proceeded to go back to Clearview Cancer to let them know I was not going to take this shot, after researching and speaking with doctors who KNOW something about neuroendocrine cancer. They said “you have not even had the 5HIAA done or an Otreascan.” So off I went arriving promptly on time, early morning sun in my eyes and not paying attention to the concrete barrier, ran over it half way, at least, and was stuck. I went in and told the staff I was not going to take the shot, that I was stuck on one of their concrete barriers and needed to go and call a tow truck.
This actually sounds comical!
The tow truck arrived; backed me off the concrete barrier, hugged me, said Merry Christmas and left. I do not know if my insurance company was charged or not. He was my angel for the day.
I went straight away to Jerry Damson Honda to see if the underside of the car had any damage. By the time they told me it was o.k., I had leased a new 2016 Honda Accord EX, heated seats, all kinds of cameras, sunroof, etc….and white with tan leather seats (photo not yet taken).
Therefore, on Friday, before leaving on Sunday, I changed from being a car owner to a leassee.
Why did I lease? Because I really did not like my gray car, did not want it to be part of my estate, my children would have to sort out, so I leased a car. They will just come and pick it up. I finally had a white car again with lots of extras. Damson had to go to Decatur and pick it up so I came home in the old gray gal and waited for my new shinning car to arrive.
Proceeded on to Mississippi for Christmas.
After Christmas, my sister and I were out shopping and I receive a call from Clearview.
“We need you to come in Monday for a CT Scan.”
“Do you know to whom you are speaking? Have you checked my chart? I have had two and have no intention of having another or coming in Monday. I am not in town.”
“Oh, yes, I see you have. Then you have to come by and pick up the CD before going to Birmingham on January 7. We have sent them all your records.”
“I am not going to Birmingham. Who asked you to schedule this? Never mind, I will take care of this when I get back.”
I hung up on them.
Fast forward to January 2.
“Hello. Scheduling please.”
“Hello, how may I help you.”
“You may cancel my appointment in Birmingham….name, etc”
“You will have to do that yourself.”
“So you made it, but I have to cancel it?”
“Yes…giving me the number.”
I hung up and cancelled the appointment.
That is when I called Ochsner.
This post is too long; continue saga later.