Hello Everyone. 4-7-2007
I will try to clarify everything in this post.
The first request is for all to cease and desist about Brian Hill. I had no idea people were ridiculing him. Please stop admonishing him, in private and public.
He is OUR LEADER, and the man personally responsible for this forum.
He has said nothing but the truth. He is a survivor, a man of great wisdom and experience.
READ Brian

PeteyB,

I have been away from the forum for a while and was wondering what was happening with you. Thank you for your post. Good luck. I can't believe a person living in this country can run in to the problems you have. Nobody deserves that.
We have about 8 more rad treatments and 2 more cisplatins to go. No major problems yet.
Enjoy your Easter and keep us posted.
Vicki

Petey, it sounds like you're doing the right things to get treatment soon but you have to keep at it.

As for it being "unacceptable" to you that your tongue, taste or ability ot eat could be taken away, hopefully you will not permanently lose any abilities. But I have been struggling to eat without a feeding tube since my treatment (which ended over a year and 1/2 ago) and I can tell you right now there is one time when it bothers me. When I'm around other people eating. Which is a very small percentage of my average day. The rest of the time I am pretty much a normal person living a normal life. If anyone had told me this was even a possibility when I started treatment it would have terrified me and part of me would probably have thought it was "unacceptable" but really it is not a huge deal on most days.

Not that I haven't been fighting and having surgeries, etc. to get back my ability ot eat (with some modest success). But I can tell you right now I have neve thought for a minute I would have been better of giving up and letting the cancer get me. Eating is not your whole life. Make a list of everything in life that gives you joy--everything. Sunsets. Your kids or grandkids. Good smells. Hearing beautiful music. Everything on that list that doesn't involve eating will still be there no matter what happens to your mouth. You'll be more grateful too, for all those things, because of this experience.

Nelie

I woke up this morning, and looked in the mirror. The neck dissection scars are just as ugly as ever, my face is swollen (as usual) and my throats sore.

The scars on my left arm really limit what I can do with my hand...I do most everything right handed now. The problems with the fibula removal in my leg cause me to make sure I have a cane in my hand before I start downstairs.

I used to love my morning coffee. I roast my own beans...now so my wife can enjoy them. I can't taste it much anymore.

And this morning, just like every morning since last June, I thank GOD that I am here, and I appreciate how wonderful life is.

I'm hoping that you will choose that future too
Happy Easter Petey, and the same to everyone else on the Board!
Wayne

Dragan you are an inspiration. Happy Easter to you both.

OK Petey, this looks like a promising start. But please do not become complacent here. Assume this path you are on isn't gong to work out. Get on your computer and start writing more people. I think if you ask your state representatives for help they will have a hard time not working for you.

So here's a free idea. Google blogs are free. They will connect you to the whole world. If I were you, since you are willing to put so much time writing on this board, I would start a Google blog about how you got into this, the uphill battle, and the lack of response, and choices. I would make sure that you email the address of your new blog to everyone you can. Post on it everyday about the things you try, the dead ends you reach, and the successes you find. I would be sure that you stay to the facts, do not talk about acceptance, but come across as a warrior for your life. As you get turned down by agencies, and individuals in them, as well as any congressmen, mayors, senators, etc. I would enter the resulting correspondence or conversations, even if just with their gatekeepers, word for word in your blog. Ask for their names BEFOR you begin your dialog and requests. If you reach a dead end, I would let those people see and know that they, and their names, branches of government, institution, or whatever is going to be named in your blog and visible to the world. You might be very surprised at how little bad press these bureaucrats can tolerate. This would all cost you nothing but your time, and it appears that you have a bunch of that. When you get your blog up and running, post the address here and others will pass it around including me.

You have to be compelling, you have to be sincere, you have to be real, you have to express your frustration, pain, and emotional condition. You cannot get sued for telling the truth. The squeaky wheel gets the oil. Time for a lube job. Time to let those in the system that is letting you down have a little light shine on them in a public venue. This is how a person that wants to live and has few resources can turn the tables around. This is fighting, changing your own situation, and maybe that of others around you at the same time. This is a noble endeavor, deserving of someone who values life.

Lastly I do not want to see you posting on here about how you can't live without a tongue. You do disservice to others who have fought hard for life. Glenn gave up part of his brain twice, a kidney, half his liver, sections of his lungs, had seizures from mets, and fought every day without complaint to live just a few days more. He approached each day with that spirit. He is just one of many. When you post that life without a tongue would be more than you could take, you do not elicit empathy from people here who have watched the courage of other

Your advice is well received and understood.

I shall endeavor to persevere.

Thank you, Brian.

Sincerely, Petey

My Gosh, What a beautiful post, Brian!

Petey, get on it tomorrow please,we are here for you. Looks like you are going in the right direction, don't give up the fight! Remember I told you about the man I met at the hospital who had oral cancer, hasn't eaten food for 4 years, Petey, 4 years, however, he cooked the entire Christmas dinner for his family, I am talking good southern cooking from scratch and he told me he enjoyed every minute of it cuz they love his cooking! I will bet he did the same today!
God Bless, Happy Easter! Carol

Hey Petey, we almost had an email crash of some sort, look at the timing of our posts, SMILE!

Having had to deal with a similar attitude from my very difficult husband,i can only reiterate every word Brian says to you Petey.As i told you in my e-mail Robin has taken his treatment with all the good grace of a bear with a thorn in its bum,but he has nearly done it ,and is still here to tell the tale . He is bloody minded enough to be around for a lot longer making my life the roller coaster ride it has been since the day we met,and i wouldnt have it any other way!!!