Gita-

You're not kidding there should be a REAL manual! In Ed's case (Uptown's my other half), we came across many a stumbling block and black holes of information. We (I say that like I had something to do with it, sorry!) endured some horrible side effects and fear and frustration until one day I very nearly laid on the floor screaming (since Ed was too doped up on duragesics and radiation brain fry - not to mention it made me feel like I was being pro-active instead of a spectator) telling them I just KNEW Ed wasn't the first to have some of these symptoms... He had third degree burns weeping from countless radiation treatments that they threatened to stop if it got "too bad". Suddenly they pulled out this mini aresenal of single copied pages with a tidbits of information. I found that for a mere three bucks, I could have spared him the anguish (and nights of sobbing from the severity of pain). Imagine! A thing called Domboro Soak! In our case it was a miracle!

My list goes on and sometimes I think about how rotten a caregiver I was that I didn't know/follow up faster or more thorough so I could spare him and others.

Now I'm sort of on a mission now to be a patient advocate. In a lot of ways Ed's been SO blessed and in turn, me too.

Susan