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#32918 05-28-2003 12:16 PM
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ahartt Offline OP
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What recommendations do you have to reach patients who decide to quit treatment...a desire driven by being overwhlmed with all the normal stresses with cancer and treatment heaped on top?


Amy
#32919 05-28-2003 01:34 PM
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Dear Amy, I feel so close to your friend! I have second thoughts about going foward with radiation/chemo now that my sugery has healed.I look at statistics on mortality and weigh the pain factor and the whole thing looks like the pay-off ain't so great. So my husband walks me thru it a lot explaining again the value of my life to our kids and my pets (who I love like kids),and how he needs me(bald and toothless is just fine with him).He has people I care for call me or show up to remind me how they miss me at work.He offers to hold m,y hand thru this every day. Believe me he needs to repeat these things often.I hate to feel helpless and violated and not in control,your friend as a male may feel this way keenly and may have difficulty owning this situation emotionally.The one thing he can control is his treatment,by not having it and getting sick,but that road may well lead to more significant pain and death! Keep talking to him and anyone else that he is close to should talk to him.Tell him many others have and do feel the same way but have struggled down a painful road to a full life again.I will pray for your situation and perhaps someone else can give you more concrete ideas as so many folk are so caring and willing to share their experiences here. Keep hope,Susanlaura1

#32920 05-28-2003 05:47 PM
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Dear Amy and SusanLaura1,
I had the surgery, healed, and just about ran to get the radiation and chemo. My perspective was that I do nothing half way, and if I was going to fight this awful disease, by golly I was going to throw everything available at it! Yes, it is not fun. However, I learned that there need be no pain. Fortunately, the prevailing philosophy is that pain serves no purpose and hinders the healing process, so I had the drugs I needed. Yes, I was out of it from time to time from the chemo, and yes, I lost my hair, and yes, I had a day of nausea, and yes, I had burns on my neck, HOWEVER, in the grand scheme of things, these are all very small and temporary discomforts, which greatly increase my chance at a long and happy life. Would I do it again? In a New York minute! Am I some kind of super person? No way. If I can get through this and come out smiling, you can too. I will be glad to help you, SusanLaura, and you, Amy, every step of the way. Feel free to contact me. Bottom line: It makes no sense not to avail yourself of a better chance at staying alive. That's all there is to consider.
Joanna

#32921 05-28-2003 10:40 PM
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Amy, Suzanluara, I can't agree with Joanna more,a I've got one up on her, I've gone through the whole neck dissection radiation and chemo deal TWICE!!

And there are some on this board who have gone through a whole lot worse than I have.

Think of it this way, quitting treatment is pretty much the same as just saying "OK, I'm done fighting and I"m giving up, make the funeral arrangements please"

I know that's kind of a rough statement, but with this type of cancer, there aint no middle ground, you fight and you might just have a chance to go on with life and have a happy and long life. You don't fight, and you're a statistic.

Never one to mince words.

Now that I've kicked you all in the rear, ANY support you need let me know, this is a tough deal, going through it is tough, but it is temproary.

Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#32922 05-29-2003 02:10 AM
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ahartt Offline OP
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Thanks so much for the responses. The passion in all of you is amazing. I'm hoping your responses will get read and really "listened" to. I can bring the horse to the water but I can't make him drink...but I sure as heck will die trying to convince him too. Quitting is not somehting I've ever allowed myself to do...although there have been times...I'm hoping now that some of this determination will rub off...now more than ever. His life is valuable to me and to many others...now to convince him. Thank you.


Amy
#32923 05-30-2003 03:29 PM
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After receiving the Pathologist's report, my ENT wanted to get me to surgery right away. In the middle of explaining the procedure, he stopped and asked if I was going through with it. I asked why wouldn't I? He said that some folks go into denial at this point and leave. They then come back in about 6 months, and all he can do is put them in a hospice. He said that even with treatment, I had a 60-70% chance of the cancer reoccuring. I told him that I had decided to be one of the 30% who get better.
As far as quitting goes, I quit trying to be tough
and got a PEG stuck in me half way through RAD treatment. Made things easier from then on.
I quit dwelling on everything, and just told myself "It sucks, get over it".


Head and neck SCC
TXN2bM0 stage IV
Finished treatment 6/02
#32924 05-30-2003 04:45 PM
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Amy,
I would get to a psychologist and psychiatrist as soon as possible!
In AA they have a saying "half measures avail us nothing". Most of us here have been willing "to go to any lengths" (another AA saying) to have the best possible outcome in a disease that doesn't exactly have the best survival rate.
I think Bob stated it very well. But even after going to "any lengths", I did my estate planning, living trust and filled out my "Advance Health Care Directive".


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#32925 05-31-2003 02:29 AM
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Amy, Based on my own experience and from what I have read from other posters at this site, it is clear that this kind of life event, is the mental equivalent of being hit in the head with a hard swung baseball bat. Literally it stuns a person!

Many experience depression and that affects our thoughts. Coping even if you don't have depression is a still a challenge. I have said it here before this is as much a mind game as it is a physical healing.

The plus side of these things is that it will be a learning experience that can build tremendous caracter. It has that effect not only on the person who has cancer but on many people around them. Read the story of Antarctic explorer Sir Ernest Henry Shackelton and his perserverence against all odds to save the lives of his men. Many times he might have sat down and said to his men "it's over" and he would have died and so would his crew.

What I am saying is that we have to remind ourselves that each of us can do a lot of good even if we have only a short time left to do it. Yes it is possible that even with the pain of treatments he may still not survive. On the other hand he may survive and live to positively affect the lives of many others. We all have this ability. Some go through life never knowing or realizing that (and in fact he may know it just temporarly distracted). If just living and dying on the planet was all we were supposed to do, mankind would still be cave dwellers.

Perhaps you can suggest to him that this is his chance to really make a differance in the world. smile


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#32926 05-31-2003 03:55 AM
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Amy,

I'm sorry to ask this question but I can't find the start of this entire issue anywhere on the forum. Is the prognosis that bad? At my stage 4 the numbers were not very good but quitting was never an option. I went through the surgery and radiation, it sucks (radiation more so). I'm almost 10 months out and the start of this whole ordeal seems like a lifetime ago! You know, In a way, I guess it was.

Glenn

#32927 05-31-2003 04:31 AM
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ahartt Offline OP
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Bob,Mark,Glenn,
The orginal "pieces" of this puzzle are no longer posted on the site. It's a long story but suffice it to say that a very shocking, complicated and heartbreaking situation coupled with a very early morning call the day after my first postings about my friend were read by a stranger in TX led to a "decision" for him to quit treatment. The cancer is stage 4. I now believe the threat of quitting treatment was probably more drama than anything else. He quit me instead. frown Six years (albeit off and on due to distance until recently) and the commitment of everything I had to give of myself...gone. I guess what they say is true...cancer is a life changing thing...and not just for the patient.

I am a firm believer that everything happens for a reason. I think the circumstances of my situation led me to OCF for a reason. While I may not be able to help him any longer I have a lot to offer and hope I can be of assistance to the rest of you (see my posting about hospital bills and reimbursement in the general forum) with financial issues, friendship, and support. There are some pretty amazing people here and it would be a privilege and honor to help.
Amy


Amy
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