Advocacy

Breast cancer diagnosis comes out of the blue.  You feel like you were struck by a thunder.  I was.  Whatever I was hearing was just dancing over my skull without penetrating.  But, slowly as the effects of chemotherapy were wearing away, I started thinking again.  And then I was dying to get more information about this devil I got that might kill me, but no information was coming forth, apart from, do this, do that, with no explanation.  Through the nightmare, having to wait to get test results “only from the ordering physician”, who may be away, busy or unavailable, as if I am unable to read a piece of paper myself, is the cherry on the cake of the life-threatening reality.  You are dragged along to dance steps you don’t even know or understand… 

In this section I tried to put together some thoughts from myself or friends regarding mechanisms to cope, including some politics of health care that I learned the hard way, like knowing what your situation is from your file, the wait times for surgery, and the new movement of patient oriented research.

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