I'm learning more and more about compassion, expectations and understanding as we go through this process with Dad.
After the jaunt to the hospital on Monday I had to bring Dad into the ENT office to be looked at and I also had to cancel a nuclear stress test that had been scheduled for today at his primary care physicians office. I was able to make the appointment easily. I had anticipated having to put on my 'witchy' hat to get the appointment but happily I did not have to don that hat. I was also worried about canceling the testing. I had been told that 24 hours would be required to cancel otherwise we would get hit with a $200.00 fee. Everything worked out fine and the woman who schedules those appointments, 'E' was very sweet offering her help if I were to need anything. She also gave Dad's primary care doc the message that we cancelled the appointment and are opting not to do the surgery. As I reflect on the day I am struck by 'E's understanding. So the day moved on and we went to the ENT. Running late as usual I was in pretty much a full panic as we walked in the door. At this point I have to drive to the door, bring Dad in and then get the car parked collect myself and my stuff and get into the office. Just writing this takes my breath away a bit. So I apologize to the receptionist, expecting that I'll be chastised for being late, and she was so understanding! ' Don't worry' she said. Sigh! So what happened next was what shook me a bit. I wonder what you might think. We were expecting to see the ENT physician. We were ushered into his exam room. Dad was prepared to be scoped and then shortly thereafter a physicians assistant came into the room. She said she wanted to make sure that the sprays had been administered and I went on to tell her about our decision not to do the surgery. She then asked permission if she could look in the scope when the doctor came in so that they didn't have to scope him twice. I thought this odd. I'm guessing that she is learning on the job or maybe Dad's situation is unusual. I don't know but as nice as she was I was not that comfortable. So on with the story. The Doctor came in and was shocked by our decision. I tried to briefly explain to him why we had come to this decision and he asked Dad why he didn't want to have the surgery. Dad couldn't answer. I reminded the doctor that Dad doesn't remember he has the cancer never mind the surgery. He talked about how the surgery would 'cure' Dad. I felt so frustrated by the fact that he didn't listen to what I was saying. Perhaps it's his clinical/medical mindset that prevented him from hearing our dilemma. I don't know. He went on to suggest that at the very least we put in an airway (tracheotomy) so that Dad won't suffocate. The entire appointment was disturbing. We have to figure out if we go forward with the tracheotomy by the end of the week. I asked Dad what he thought on the way home and he wouldn't even talk to me.....I think it must just be too much for him. It's too much for me too.
Later in the day I did talk to the primary care doc. He got it! He wasn't judgemental, he listened and he offered help. I could cry from relief just thinking about it.... He is contacting a social worker with hospice so we can meet with them and see what that process will entail. He said that if the conversation with hospice changes Dad's mind we can still go forward with the surgery if that is what he wants. He did say that either choice will be very difficult.