Saturday, May 16, 2009

Is what you heard really what was said? or the importance of having a buddy

I think one of the most important things for a newly diagnosed cancer patient to do is to take a "buddy" with them to the appointments with the doctors, especially in the early part of the process. I think we all tend to have our brains shut down and our ears close when we hear that line, "I'm sorry, but the biopsy shows that the tumor (microcalcifications, whatever) is malignant.

I have encouraged people that if they can't have someone there, then take a tape recorder. I know that on several occasions my brain just couldn't really grasp what was being said. In other cases, my understanding of what was said was entirely different than someone elses. It helps just to have someone else's perspective.

The prime example of this was when I had finished my last chemo treatment in 1998. My oncologist was Samuel Bobrow of the Hospital of St. Raphael in New Haven, CT. Sam is an excellent oncologist and a great guy. We were in one of the rooms and he had gone over my latest test results and we were looking at a film showing the metastesis to my pelvis.

He turned to me and said, "Well, we've done all we can do right now." I was shocked. I can't remember what he said next but I know I took a deep gulp and said "I know that doctors currently don't like to do this because it varies from person to person, but how long do you think I have?" He startled. "What do you mean?" I said, "How long do I have to live?"

"OH! That's not what I meant! What I meant was you have completed your treatment. We've done all that we can do at present and everything looks good, but given your history and given the fact that it is in your bone, we can't do anything further. We will keep watching you, and checking to make sure that nothing shows up. This will be a chronic disease that you will have for the rest of your life, but your death is not at this p0int iminent. "

Wow. I had heard what he had said, but I didn't understand it. While he meant that I would be managed and kept patched together until either the disease showed it's ugly head again, or they developed more methods to combat it. That certainly isn't what I had "heard" and having someone there might have helped out....but that brings up another point, if you don't understand, or even if you think you do, repeat what your understanding is back to your doctor so that you can be very clear on what is going on.

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