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#198988 09-07-2019 04:07 PM
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ConnieT Offline OP
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what's your take on drinking pretty regularly...like buying the 30 packs each time you buy beer? I don't drink but just wondering when it comes to OC and other cancers? do you avoid alcohol now or drink rarely? just curious

FYI...i saw another empty box in the trash the other day. he is trying to hide it from me that he is drinking.


ETA never mind, I"m probably wrong to be worried/concerned.

Last edited by ConnieT; 09-07-2019 04:52 PM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198989 09-08-2019 03:03 AM
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Hi Connie!

If you do a search for the alcohol debate (to drink or not to drink...) you will find a great many posts on this topic. The main cause for OC is tobacco and/or alcohol so no wonder you are concerned your "patient" is drinking!

The answer to the alcohol question varies greatly among docs and patients. Depending on what the patient has been thru, the doc could say different answers. Some doctors will say an occasional drink is ok but to avoid the "hard stuff". Other docs say a beer or glass of wine are ok in moderation and they're much less irritating to the patients very sensitive post-rads mouth. The key word there is "moderation". I take that to mean once or twice a week to have a few sips or up to once or twice a month having a beer or glass of wince but only one.

Of course everybodys different and docs will take each individual patients history into account when answering the alcohol question. In my situation (Im not a drinker), my doc said its my decision. He said for my situation after having 4 tumors and OC 3 times its not worth the risk. I also asked my family doc who has my entire health history as Ive been going there for well over 20 years. My family doc said I should avoid all alcohol, no drinking. But these same doctors would probably answer that differently if it was someone who had OC once and had several years of cancer-free checkups. Unfortunately almost every person Ive met over the years who has continued to drink alcohol has passed away. Theres only one person left who drinks beer every evening which is surprising considering they've had OC 3 times. I dont know if drinking beer is that person tempting fate, being in denial, or possibly they're an alcoholic? To me, the why behind it really doesnt matter, whats more important is if in the end drinking beer has shortened their lifespan.

Being only a year after finishing rads, your husband is still in the recovery phase where he still has a way to go before he is considered 100% recovered. To me, its not worth the risk, especially in the quantities you mentioned. If the empties are hidden then that tells you everything you need to know. Your husband knows what he is doing is wrong and is attempting to hide it. Only someone who is feeling guilty or embarrassed would bother to hide their empty cans/bottles. Actions always speak louder than words!!! Id bet if your husband asked his doc if its ok to drink he would be told no but it wouldnt influence his current routines.

Check the search and you will see hundreds of posts with varying opinions on this topic.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #198993 09-08-2019 04:57 PM
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ConnieT Offline OP
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wow thank you Christine! I had been doing some research and was finding possibly a strong connection between drinking regularly and oral cancer. Then his son said, well, maybe he just wants to enjoy life. Actually, his idea of enjoying life is one reason he's where he is health wise. He does not believe chewing tobacco, smoking and drinking quite a lot have anything to do with his cancer. He truly does not believe it and has said so.

I'm not going to be surprised to see cans of tobacco sooner rather than later. I hope not but I will not be surprised.

I will do some more reading. He has been warned about the drinking. And yes, if you are hiding it, you know it's wrong. I don't say a word about it to him. I just keep my eyes open.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198994 09-09-2019 05:15 AM
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Connie as you know, your "problem patient" likes to do everything his own way. Unfortunately his stubborn beliefs in incorrect data is another part of his being in denial. Im very surprised his denial has spread to his son who now also is ignoring all the known facts about the bad habits. Theres a great many years of research behind why smokers and drinkers are getting OC so much more often than those who do not use those things. I doubt he will ever change his way of thinking no matter how much verifiable, correct, up to date data is presented to him or by who. Of course he will value something coming directly from a doctor more than anyone else. Im sure deep down he really does know the facts are correct but his addictions are whats behind his beliefs and all the denials.

In the end anyone who has/had OC and did NOT change their pre-cancer risky ways are heading for much struggling and suffering down the road when the cancer returns. Although he doesnt realize just how lucky he is, your husband got thru rads surprisingly easy the first time. I doubt anyones luck would hold out for a recurrence! Unfortunately someone who refuses to follow doctors orders and/or to focus on their daily intake is going to have a difficult time of things. Its a matter of time before he has serious health issues which are his body's way of saying... "wise up"! Its all related, his terrible nutrition, ignoring doctors advice, the denial, tobacco/alcohol use, etc. No matter what info you "accidentally" leave laying around for him to "find" he wont believe it. I bet his thinking is so skewed he "knows" the people on the CDC's anti-smoking ads are fake too. Of course they are all regular everyday former smokers who all learned the hard way to avoid tobacco for good. If he truly believed he suffered thru his OC treatments and recovery and it was just awful then he would not ever again pick up what gave him the cancer in the first place.

As you know all too well, you can lead a horse to water...

Hope you are taking good care of yourself and everything with you is great smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #198997 09-09-2019 03:04 PM
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ConnieT Offline OP
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I really appreciate how accurately you are seeing my situation Christine. A really good counselor has said he is a narcissist so his behavior through all of this adds up in agreement with her assessment.

I did some reading last night on various studies and sites to get a broad overview and do see the connection to tobacco/alcohol/cancer is real the first time and in future occurrences. He doesn't listen to doctors either. One of them told him to stop acting like a 2 yr old and what was keeping him from doing things the right way. He wants to hurt that doctor. Reality bites.

Thank you, I am taking care of myself. My eyes have been opened widely by all the lies/denial and I truly believe that none of the slander about me is true. I walked thru the cancer journey with him though every fiber of my being did not want to do it. I feel I'm going to have to walk it again someday but this time, I'm stronger.

You and others have done a fine job carrying me thru something I knew nothing about and had no where to turn. Thank you from the bottom of my heart


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #199006 09-10-2019 02:53 PM
Joined: Jul 2012
Posts: 3,267
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Connie,

You have my sympathy and support Connie, even if it’s only to listen. Just because there may not be many responses, people, I, feel for you, and are on your side!

Keep up your good work, and don’t forget to take care of yourself!

Last edited by PaulB; 09-10-2019 02:54 PM.

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #199012 09-10-2019 06:35 PM
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ConnieT Offline OP
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thank you Paul. I so appreciate what you posted.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #199021 09-11-2019 09:48 AM
Joined: Jun 2013
Posts: 346
Likes: 3
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I'm going to take a different tack on this one. He's hiding stuff ... but is it because he thinks it's 'wrong' or because he just doesn't want to hear about it?

Also, it's an addiction at this point, most likely ... he's been through a horrid experience (maybe not as horrid as some, but still not pleasant) ... and he at least thinks he derives comfort from the alcohol or tobacco ... it's NOT easy to stop an addiction.

I'm not excusing him. Just offering another point of view for what might be going on in his head.

My own father suffered heart attacks most of my growing-up years. All his brothers and sisters did, though his were the first serious ones, so no one knew about the family history aspect of it at that point. (He was the youngest of twelve.) He tried to kick the smoking habit, but he couldn't. Not even with using the patches and stuff. He knew he needed to, but his job stresses were too demanding. (Honestly, I think that's what killed him, more than the heart issues.) And so ... he died of yet another heart attack, when I was 17. It was not pleasant to watch. It was awful to attempt CPR on a man who'd just gotten back OUT of the hospital after open-heart surgery. He certainly never meant to do this to his family. (And the surgeon and nurses bear some blame there ... there were some less-than-proper care moments while he was still in the hospital, but that would be a longer story.) He was a good man and he tried ... not quite like what you're dealing with. But that was one addiction (his only one, that I know of) that he just could not break.

Even now, all these years later, I have absolutely NO idea what any of us could have done differently to help him. He would probably have been willing to try things, but I still can't think of anything that would have WORKED, going up against the stresses he had and all that sort of stuff. (Short of time travel and flat-out telling him what he wouldn't be around for, which we'll leave out as an option since it doesn't exist.) He would have tried ... but I think by the time we found an answer, his heart would have been too far gone. (Apparently at his last surgery, he should have been a candidate for a transplant instead of just the surgery.)

Some things a person has to do for themselves, and they have to find a reason within themselves that's worth fighting for. Some people can't find that reason. Or are afraid to look in case they can't find one. I mean, the way you've described him ... does he even HAVE a reason to keep on fighting? Can you think of a reason for him to keep on going? Life just to keep breathing isn't life, really. It has to be more than that ... and some people can't find that reason. Other people can offer reasons, but it has to resonate with the person himself or it doesn't count. And he doesn't sound like he's in a very stable place. frown

Sorry to go bleak on this ... it's not aimed at you, certainly. Just an insight into the dark places the mind can go, sometimes without even realizing how it got there, or that it needs to climb back out again. It's harder than chemo, radiation, and surgery all put together.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #199030 09-11-2019 07:18 PM
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ConnieT Offline OP
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He goes from why did he get to live to he's going to die soon anyway. He has black and white thinking most of the time on everything. there is no in between choices or thoughts, just extremes.

I"m not sure why he hides things. I haven't said a word about it since he finished treatment and I warned him of the consequences of going back to drinking and tobacco. I have not said one word since. He is very adamant that no one is going to tell him what to do, etc.

He rarely drank until the year before his cancer diagnosis. His step father is an alcoholic and he just stayed away from drinking except on an occasional camping trip or things like that. I never said anything back then either but found it odd as he was so not a drinker.

He says he is miserable and is expecting me to fix that. He refuses to go to counseling. I can't help him, I now know the issues are not about me. They existed long before I met him. He drove for hours a few weeks ago to buy another dog though I did not want a dog. Dogs and alcohol solve life's problems I guess. He's constantly simmering, angry, but it was this way before cancer. nothing new here.


The bottom line from my years with him are this: no one is going to tell him what to do. not doctors, not medical websites, etc. He desires instant gratification and alcohol must do that for him? I'm not sure. He did not go back on his anti depressants after treatment. He has been on those for decades. I'm not sure if they helped or not honestly.

I'm listening to perspectives from each of you. It's taken me years to really believe I am NOT the problem as I am blamed. I'm not perfect but I'm not the root of all evil! He isolates himself, lays in bed to eat, watches tv if he is not at work or mowing lawns for a side business. All like before cancer. The selfish part of me doesn't want to have to go thru all that treatment, and loss of normal life again so watching all the beer cans disappear from those cartons stresses me.

thanks so much for listening and the input. I do read and contemplate what each of you write. I have not walked his journey so it's hard for me to make sense of some things though most of the issues were around long before cancer, we just have new ones to sort through.

I will add that he does not believe his life style choices caused the cancer so he has probably convinced himself that drinking is not an issue.

Last edited by ConnieT; 09-11-2019 07:20 PM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #199037 09-12-2019 11:38 AM
Joined: Jun 2013
Posts: 346
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Wow, if he went off long-term anti-depressants, that in itself would cause a big personality change. I can't recall if we talked about that before ... but WHY did he go off them? Was that a doctor's suggestion, or his idea? Whether they helped or not, they became a part of his system, and now that's missing, and certainly not helping either one of you.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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