hi all,
thanks for your responses. we're settling with a medical oncologist as primary physician. we've decided that if there is going to be any more surgeries involved the decision should be made through a multidisciplinary consultation unlike the first time when the surgeon pretty much acted on his own. live and learn. what i don't quite get is why you have to pay such high price for what you learn. i keep thinking there needs to be a manual to guide people through these processes, and i believe people who have first-hand experience are the best to write it. i've learned much more from reading posts on this board than i did from all the material i'd read on various medical establishment documents. thanks again.

be well.

gita

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

They DO have a manual - it's called "Living Well With Cancer" by Katen Moore and Libby Shmais. They are both oncology advice nurses and do a pretty good job of telling you what to expect and how to cope with it. They really cover it well. I found the book invaluable. I am sure that there are others but this one worked well for me. They even cover alternative treatments as well (from an adjunctive perspective).

The book Gary likes is available in 1-2 days from Amazon, use the link at the top of the first forum page to get to Amazon, and it helps the foundation. $14.95. While I haven't read it, Gary's recommendations have been really good in the past.

Amazon.com
The cruel irony of cancer treatment programs that cause additional pain--both physical and psychological--prompted two concerned women to write Living Well with Cancer. Oncology nurse practitioner Katen Moore and medical researcher Libby Schmais present a comprehensive resource for those who suffer from mild to severe side effects of chemotherapy, radiation, and drug treatments associated with cancer.

Conversational yet never wordy, their extensive