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#55193 07-20-2004 01:01 AM
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Rosie, sure you have a right to rant and rave at those of us still living and especially to someone like me that's temmpting the cancer gods. The only people left in my life are my dad and my two brothers. My partner of 12 years is still my friend. The only one in my house now is my Heinz 57 doggy and she loves me a whole bunch. I'd love to come to Vegas but I'm not sure I can afford it since I'm financially on my on right now.

I'll so into the site talking about the Vegas trip and see what the details are.

Thank you for your thoughts and prayers.

#55194 07-20-2004 01:09 AM
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Thanks, Brett. I've been a smoker since I was 12 years old, "old habits die hard". Since my treatments I guess I just don't want to give up my so called pleasures.......smoking and drinking. I'm kind of hoping I'll get a grip with the communications from those that have "been there, done that". However, as Ed has pointed out, in the nicest way possible, nobody but me can make me want to live the rest of my life in a positive way.
Sandy

#55195 07-20-2004 01:13 AM
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Ed, no offense taken. You are a very positive person and have a zest for life. Thank you for the inspiration you've given me.

Sandy

#55196 07-20-2004 01:23 AM
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Brain, are you nuts? Jumping out of planes? Get on with yourself! haha
Sandy

#55197 07-20-2004 03:43 AM
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Sandy, just remember that the recurrence rate for those who return to tobacco and alcohol after this is VERY high. Many studies have been published about this. The treatment options the next time around are very few, and the ones the doctors offer you will be grossly extensive. In relationship to the head and neck, think extensive salvage surgery, and removal of major body parts. For the rest of your body you can add dealing with second primary cancers in major organs that most often are fatal. This is not something to screw around with or take lightly. While I respect your right to do what ever you wish, perhaps you may need some conseling like I did. While mine was for a different reason, continueing self destructive behaviours even after a brush with death, might mean that talking it through with a professional is in order. It will take a major amount of will power and desire on your part to get past these desires. That has to come from within you, outsiders like us can only offer you support as you try, and a prod when you need it.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#55198 07-20-2004 05:39 AM
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Sandy,

Brian gave you the full version to my Reader's Digest condensed version. Consider me the "good and honest person to say it to your face in hopes you will finally get it" to paraphrase Brian's statement. As many who know me will attest to, I will bend over backwards (with a little neck pain now) to help anyone in any way I can and provide unbelievable support to anyone that asks for it. Sometimes I am brutally honest but as Brian says, this is nothing to mess with.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#55199 07-20-2004 09:52 AM
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Sandy,

Brian and Ed are telling it straight. Like me, they are concerned that you are not "getting it." That's not a judgement on your character, just concern for your emotional and physical well-being. (My late husband died from SCC; he had smoked the most expensive pipes and drank the most expensive Sherry and Irish Whiskey for 29 years. This past March, when he was told he had a few weeks to live, don't you bet he regretted every smoke and drink he'd ever had. We had only been married 22 months when he died. He had stopped smoking and drinking just after our marriage. Sadly, the damage to his body was already done.)

Brian rightly pointed out that change "has to come from within you, outsiders like us can only offer you support as you try, and a prod when you need it."

So, here's my prod because I care about what happens to you.

Christine


Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
#55200 07-24-2004 05:39 AM
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Sandy,
Although I wish that you would give up the smoking and drinking, I actually like the honesty of your attitude. People often expect us ( cancer survivors ) to walk around with pollyanna attitudes, being appreciative of every sunrise, sunset, and bird that sings. However that is not the reality of most of our daily lives. We grieve for that hamburger and those chocolate chip cookies that used to taste so good, our lost ability to jump on a plane or into a car at the last minute and to take off without lots of planning...no soup in a thermos or suitcase full of Boost. Believe me there are days when I am mighty pissed off about not being the guy that I used to be. As my friends scarf down hot dogs and snickers on the golf course, I pull out my little bottle of chocolate boost, and hope that I don't get too hungry before the round is over. But the good news is that I am playing golf! Like Brian, my water bottle is part of my right arm, and I pee more than a little kid ( or old geezer ). I hate it...I don't like it, I want my old life back!

Having said that, life is still pretty damn good. I was here to take my oldest child to college last year. I was here to drive my middle child to camp two weeks ago. I was here to take my youngest son to Hawaii last week where we rode bikes down from the 10,000 foot volcano and snuba dived together.

It's okay to be pissed off. We have earned the right, and besides, each of us handles our situations in our own ways. On the other hand, life does offer great possibilities. Since my recovery I have become involved with the most wonderful woman and life, though not like it used to be, is good.

Take care buddy,
Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#55201 07-24-2004 07:49 AM
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Thanks, Danny. I really appreciate your response. I'm not totally ungratefull that I'm still alive and I do enjoy most days. I also enjoy brandy and cigs. Although most of us won't agree with me, I just think I've sacrificed enough with everything I've had to give up. I thank whatever power there is that, at least, I'm able to eat just about any kind of food that I can smush up enough to swallow. There are many who must live the rest of their lives on liquids.

Maybe not having children has something to do with my attitude. I only have my (2) brothers and they don't live in my state. Right now, my dog is my motivation and, for now, that's getting me through each day.

Sandy

#55202 07-24-2004 09:42 AM
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Sandy
Everything in this life is a choice, you choose wrong and there is no going back, but choose right and life can be so good.. and this is not a dig at you.. if you read some of my past posts I refuse to give up my red wine..So just choose carefully...
sunshine.. love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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