but first an explanation

Before I start, I want to clear a few things up. I have never written a blog before. I am not a writer. I am a husband and father. Just a regular guy with a great wife and kids. My children are grown now, twenty-eight and twenty-five. The oldest is a son and the youngest is a daughter. When this brain tumor stuff started my son was in college, a three hour drive from home. My daughter was about to turn sixteen and in high school. I haven't identified us by name or location yet only because I have never done this before. I want to walk before I run. I'm really doing this because I need to get things out of my system.

After all these years dealing brain tumors, I found that I lost my faith and trust in others. Not everyone, but so many that I didn't expect. Eventually I became blinded by the emotional stress and financial loss caused by a major illness. You can never be prepared.

I have asked a nurse to leave my wife's room. You should have seen how fast the hospital administration came running down to see me. I asked to work with a new social worker because I felt the first one was treating us like a number, and kept reciting policy and procedures instead of treating us like people with real problems. And then there were the doctors that didn't believe that spinal fluid was leaking out of  the top of my wife's head, because they did not see it. Even after a staff infection set in, they still didn't believe there could be a hole in her head. Her hospital nurses discovered the fluid on her pillow, which is exactly what I described to the doctors in the first place. We no longer see one of those doctors. At least the other doctor told me that he missed the hole, and I believe that he learned from the experience.

I have learned to be my own patient advocate. I learned how to, and what kind, of questions to ask. And I learned how to get them most out of our doctor appointments. Those few minutes that they give us, are my wife's minutes, not the doctors minutes. We are there for my wife, not the doctor.

Thanks for letting me vent.