I had a VERY frustrating morning. I had left a message for the casemanager about 8 days ago, but when she didn't get back with me, I called today. I really can't write about all the jots and tiddles of the information I got today -- I'm just too tired and too upset. But the upshot of the whole thing is that some tissue of mine is going to MD Anderson; likely I'm not. It was a very emotional conversation because there was a lot of misinformation that I'd been given, and misunderstandings between the case manager and myself. I talked to her boss for about 45 minutes today, but having had a major nuclear meltdown first thing this morning, has really kicked my butt. I'll write more about it maybe tomorrow. Sufice it to say, it was a huge blow to me to find this out and try to make sense of things.
I really, really, REALLY wish that these medical professionals could "get it" better that they are genuinely talking to people like myself about real "life and death" issues and that ignoring me by not returning calls, or being superior and making decisions for me without consulting me is disrespectful and most upsetting, and that just reciting information off a formulaic sheet of information won't make me understand it any better by repeating it again. Talking to me in a mystical language of medicalese, and suppressing my right to make decisions by making them for me leads to so much personal grief for the patient. Ignoring my calls is just a perfect example of power and authority and putting the patient into a submissive position. I'm so angry. So angry.