Nov 27, 2010 - 11:22 am
I just replied to Bob's Wife's post and it got me thinking. Wouldn't it be great if EC doctors would read our board sometime and see what is working for the patients and families here?
Almost every single medication and things that have helped my dad's quality of life came from recommendations from this board. Thanks to Sherri for the medication tips such as the Zofran, that improved my dad's life beyond words, when he was vomitting so violently he was miserable.
Too many times we are passive and think the almighty doctors know it all. EC is not a one size fits all kind of disease! Why are the doctors so slow to make changes in treatment plans, even if it is just about managing the syptoms?
Anyone who has been following my EC journey with my dad may get a kick out of this story. When my dad was in the hospital 10 days ago, he had a new doctor come and consult with him about radiation for around his throat since the primary tumor is pressing on the nerves for his voice box and his larynex making it difficult for him to speak and breath. The consult was called before we knew about the brain mets. So this young doctor comes in all gung ho telling my mom and dad (who was about half dead and acting all koo koo from the brain mets) that he wanted to do radiation on my dad so he could eat again. What? He can't do anything about the larnyx and breathing but if they drive the 90 miles 5 times a week for 6 weeks to get radiation, after a little "discomfort and sore throat" my dad may be able to eat.
My dad hasn't wanted to eat in weeks. His body is shutting down as he is in that part of the journey. This money hungry smug doc wants to zap my dad? My mom very nicely declined, about 10 times, and he still was pushing it on my dad, and he knew the mets were in my dad's brain.
Finally my mom stood up and gave him a little piece of her mind. She went off about how this EC board knows more about what works for this cancer than the doctors do.(ouch) They warned us not to get the stent, get the J-tube early, ect..and you doctors don't listen. My daughter's "cancer friends" have been right all along. They call this cancer the Beast and you would not be helping him in his last weeks of life by giving him radiation.
Go Mom! I'm glad she got that off her chest and stood up for my dad.
Blessings to you all,