today's mail

I want to briefly go back to today, 1/13/10. I received a notice, form a local hospital, about an up coming brain tumor education and support group meeting. This hospital has one every month, and I attended one of their meetings a few months ago. I felt their big thing was, the education, not the support. The one I went to was given by a medical professional, and this one will be given by attorney. I appreciate professionals that give their personal time. It wasn't what I was looking for. If it works for you, I'm glad, and wish you the best. When I attended, I felt like the professional was telling me how the system works. What I got from the meeting was, what I could expect form the medical community. I left thinking that social workers were an extension of that medical community. I felt they wanted to tell me what I could expect, and what I was allowed. When I expressed that it wasn't good enough, I felt I was cut off.

What I want for brain tumor patients and caregivers is openness, honesty, respect, and clear options. Two way communication, about your own specific issues. There were a number of other people there, and I was totally surprised that none of them spoke up to express the same things that I did. Anytime they did speak, it was to say that they had the best doctors and the best care. I was taken back and pretty much put in my place. I seemed to be the only one in the room that had any issues. Then it dawned on me. The others that did speak only had one or two procedures done. My wife had been through eight. Three surgeries, four radiations, and ongoing chemotherapy. She was, at that time, in a hospital bed, with a staff infection. I can't wait to tell you about the staff infection, but that will be a while form now. It took a long time before I realized that, in my opinion, I wasn't getting the full story.

I don't remember feeling informed that Marie could have severe memory issues. That her feet could swell so large that she couldn't wear shoes for months. That her skull wouldn't heal and spinal fluid would leak out creating other more dangerous problems. This list could go on and on. It was only when I looked back to the the road map we had traveled, covered with potholes, that I realized, that I believed, there is a problem. These others at the meeting, had not traveled far enough down the road. I hope they never do. If they do, I hope it's a smooth road, with no problems. I can only speak from my own experience. Two states, three hospitals, eight procedures, and countless doctors and nurses. Many have been outstanding professional and some have disappointing. I feel the heath care system can do better. Much better. I have had people say to me, we should be glad we have the health care system that we do have. It's the best around. I don't know if that's true or not, but I believe that is what they want us to think. Be happy for the health care you get, pay your bill on time, and don't complain about anything.     

I would really like to see a brain tumor support group, given for patients and caregivers, by patients and caregivers. I would also like to be a part of a support group for care givers only, and I wish Marie could be a  part of a support group for patients only. If things are going to change it needs to be a grass root change. I