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Asking Doctors for Options

LivingFaith's picture
LivingFaith
Posts: 84
Joined: Jul 2010

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,

Deb

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

Deb, I think of you so often, and always when the Husker games are on. Wondering how you are doing, and knowing how hard it must be.

You are so right, and I think we probably do have some of the same doctors. They are usually open to suggestions, but as far as bringing something up theirselves........ It seems they will be open to something, and even say it's a good idea, but why don't they just say it in the first place. Maybe even in a city this large they still really don't have enough cases to know a lot of it. Some of our best help has actually come from the chemo nurses. Thanks for the under the tongue med idea, I didn't even know it existed.

I bet you are so tired, but you are there for your parents, and for yourself. You are such a wonderful daughter, and I know your mother has to be so thankful to have you at her side. I have found the most compassion and caring from my own daughter. She is such a blessing and I know you are, too. I can tell just by the way you write of your love for them.

When things seem overwhelming my favorite verse is, Philippians 4:7, And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. May God bless you and your family. Linda

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

This is the best post I have read in some time! I was so thrilled that your mom has listened to you and all you have learned. Your mom is quite the lady standing up for her man that way. I am taking lessons as I read it. You must be so proud of her. Hang in there with your dad. You have been an incredible daughter. I wish my daughter was there half as much as you have been during this trial with your dad. Be proud of yourself for the daughter you are to both of them.

God Bless,

Linda

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