[fauxgypsy]

I spoke with my surgeon today and he agreed that it was not a nerve, that he had been wrong. It is axillary web syndrome but the treatment is still the same. Gentle stretching. It has been a long day. The clinic or the hospital had messed up scheduling again today so I had to wait hours. And then the lymphedema specialist left before I could get there after saying she would wait since it was not my fault that I was late. We had a "come to Jesus" meeting ( as my sister-in-law in Texas would say) before I left my oncologist's office. Last week they had forgotten to schedule my treatment. I don't know what happened this week. I am tired of them forgetting to return phone calls, schedule tests, etc. I wasn't ugly but I had run out of patience. I don't think it will happen again. I told them that I loved my oncologist but they needed serious help in the office. Nobody seems to have a clear cut job. They need someone to be in charge and not have everyone doing everything. I just keep telling myself that it will get better.

I am numb behind my underarm but it feels as if sensation is coming back. I am more concerned about mobility. The cording is very obvious at this time and the physical therapy had mede it worse. I think she was pushing me too agressively. I am going to continue the exercises but with caution.

Chelee, I am through with being dismissed. I made that clear to my surgeon today. I told him that I understood that they could not be experts in everything but that I could be an expert on me. I hope it was clear to my oncologist's staff as well. I asked them just how they could have forgotten to schedule my treatments, that this was my life. I have decided that if they are uncomfortable with me finding information on my own then they will just have to get over it or I will keep looking until I find a doctor who understands that I am going to be proactive. I pushed them about how long it is going to be before they do some tests to find out why I am losing potassium, I questioned them about the blood in my stool which may or may not be caused the potassium I am having to take. I am careful about where I get my information but they also need to realize that we are the ones getting these treatments and surgeries and we know better about what we feel and about our symptoms and side effects than they do sometimes. Much of what we discuss here may be anecdotal, and not always backed up a double blind study but if a large percentage of us are having the same problems then there is a good possibility that they are real. Sometimes if they would just listen to what we bring them from the internet they might learn something. My oncologist doesn't specialize in breast cancer, there is no way he can keep up with the latest breakthroughs in every possible type of cancer there is. There might be something they don't know. My surgeon actually thanked me for bring him some papers today.

Keep the faith,

Leslie