#23366 06-04-2007 10:18 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hey TK
I just awoke to the need of a pain med. This routine is getting old. I wake up, take pill, check computer till meds kick in, return to bed. I pray this will end soon.
Then when I read the posts here I realize that my problems, large in my perspective, are but a fly on an elephant's back compared to what some here are facing.
In response to your above stated question:
There are many people like me. The ironic and sad fact of the matter is that so many are right here on this website. I will not name names (too many) for fear that I may fail to mention someone.
I think it is the unique quality that we humans possess. We are at our best, when things are at their worst.
Stay strong. Petey
PS: I am at the stage of just starting to lose everything for real. I wonder several times a day if all this pain should just be put to sleep.
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23367 06-04-2007 10:41 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Dear Petey there is an old saying about it being "darkest before the dawn" cant remember the exact words,but i always found Robin was at his worst first thing in the morning.The pain always seemed more acute,and he was always very low.On most days after a couple of cups of tea and a freshen up he seemed a lot brighter.I think if you are managing to sleep then you get out of sync with your pain med schedule,and when you wake up the level of medication in your blood stream is very low.The use of a slow release patch helps with this situation as you receive a steady measured dose of pain relief 24/7 and can top up with your regular meds.Get this sorted before you start tx , Petey as i doubt the situation will get better anytime soon.Stay focused my love it will be worth it in the end Easy Rider.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#23368 06-05-2007 07:44 AM | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | tnkay
Are yall coming to Memphis for treatments?
I like Petey suggestion of the TV.
WREG channel 3 activist is Andy Wise. He may take on your story. May be worth a try.
Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | |
#23369 06-05-2007 07:51 AM | Joined: May 2007 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2007 Posts: 41 | We are tring to get coverage, then have to have teeth taken out, Dr from Vanderbilt is going to try to set treatments in Jackson, if they are equiped to handle his case.
Never thought about Andy Wise...but with the luck we have been having, can't handle another turn down right now.
I see what everyone is saying, about a long hard road to travel and we are just beginning..God..help us.
Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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#23370 06-05-2007 04:04 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Here's a wild thought- there are several more "presidential debates" scheduled. HOw about Petey and TK sendiang their story to CNN and Wolf Blitzer to see if he would work them into a discussion in a future debate of how the current medical policies in the USA are not working. Amy in the Oz
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#23371 06-06-2007 04:37 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Here's another. We can have Michael Moore (controversial movie producer of "Sicko") drop Petey (me) and tkay2001's husband one mile off the Cuban coast in an inner-tube and we can paddle to shore while he films it for his next movie "Sicko II- desperate Americans flee to Cuba for Health Care"???? -----------ALL KIDDING ASIDE------------------- I can make light of my situation "now". But tk2001 is in a "REAL FIGHT FOR LIFE" right now and I am desperately trying to do what I can. I will post either later today or tomorrow. In looking back on my fight for life, I am really pissed off. I just was looking at my pre-op pictures my daughter took of me after I shaved my goatee. The lymph node, which was my first sign of serious trouble, grew 8x its original size in the 60 days I waited. tk2001, I'm trying to help, but you need to take "desperate measures" to get the medical care you need. Maybe drive him to Nashville with all the medical paperwork you have and DEMAND to see the Governor! Tkay2001 GO TO THESE WEBSITES: http://www.state.tn.us/ http://state.tn.us/health/ THIS IS A FIGHT TO SAVE YOUR HUSBAND'S LIFE! WE ARE ALL BEHIND YOU!
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23372 06-06-2007 08:00 AM | Joined: May 2007 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2007 Posts: 41 | Ok I have emailed John Wilder, Phil Bredesen, and our local news station person, Andy Wise. I told them exactly how I felt and told them I wanted to hear from them, what they expected our family to do. I will continue emailing and calling until I get a response and will keep you posted.
Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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#23373 06-06-2007 09:22 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Tim Malloy the reporter who is following my story is to do another segment tomorrow. I told him about TK's husband. He said we could talk tomorrow. But his station WPTV5 is a NBC affiliate and Andy Wise, WREG3 is a CBS affiliate. I will ask him to make a courtesy call, and maybe segway into it in a brief 1 sentance in my interview about the plight of the uninsured and cancer. That this is happening all over the USA. I also want to ask him "point blank" why they always edit out when I say the Oral Cancer Foundation, or www.oralcancer.org. There are 60 million uninsured Americans. And I read somewhere that more than 1/3rd of those with insurance (80 million) are under insured.
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23374 06-06-2007 09:42 AM | Joined: May 2007 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2007 Posts: 41 | Thank you Petey, I just hope we can get something done. There is no excuse for what cancer patients have to go through to be heard and get help. The stress this is putting on our family, and most of all my husband, isn't good at all for his condition. Just makes his health worse, he has almost come to the point of giving up, he said, "by the time, if it comes, that I get help, the cancer will be far worse and the treatment won't help. I'm a dead man." To hear my husband talk like this, makes me want to fight even harder than hell to get him better.
GOD Bless the ones helping, bending over backwards to contact others on our behalf, and lending their support. You are God sent.
Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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#23375 06-06-2007 10:12 AM | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | WMC TV5 is the NBC here in Memphis Petey. I used to go to Sunday School with the news director, but I understand he has left, so I do not have a contact for your reporter.... 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | |
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