ok...here is what i know...mom called and said she needed me to talk w/ dad b/c he won't listen to her...he tends to shut down and shut out people even before cancer diagnosis...mom feels dad will sometimes listen to me when he gets like this...so he has 6 radiations and one more chemo left...the past 7 or 8 days have been really bad and i'm speculating that the straw that broke camel's back is the numerous sores inside mouth, lost of taste...in addition to constipation, diarrahea, extreme tiredness, etc...yes, ya'll know more than me...he is not a complainer so thats what i've pulled out of him so far...he was doing good amnaging his side effect and was told all of these that might to be expected...but he kinda hung his hat on that day 3-5 after chemo was the worst then gets a little more manageable for just a couple days before it starts again...WELL NOW...the 'bad' days r getting longer and 'not as bad days' shorter...actually mom says it's cummlative and pretty much he hasn't had any 'break periods' ...OMG....I FEEL SOOO BAD FOR HIM...MOM SAID SHE FOUND HIM LAYING ON THE BATHROOM FRIDAY W/ TOWELSUNDER HIM B/C HE WAS TOO SICK TO MOVE....shortly after that he told mom he wasn't go back to treatments....that the doc's always do more than hethinks he needs...he says it's "overkill" and he's not going back...she calls me and he tells me he feels wonderful and everything is fine...mom is in the background saying...'tina, he lying..he feels worse than ever.....anyways...last convo he says he is going to talk to doc tommorow...BUT MOM THINKS HE MAY BE TELLING US WHAT WE WANT TO HERE TO GET US OFF HIS BACK...........MOM WANTS ME TO MAYBE JUST SHOW UP AT DOC AND BE THERE W/ HIM TOMMOROW SO I GOT A SITTER FOR MY 2 YR OLD TWINS......KEEP IN MIND...DAD DOESN'T WANT ANYONE TO COME "WASTE" THEIR TIME TO VISIT HIM DURING RX....FINALLY TO MY QUESTIONS........ISN'T THERE SOMETHING THE DOCS SUGGEST FOR SIDE EFFECTS...DOES ANYONE KNOW OF SOME MEDICAL SHAKE I HEARD OF A WHILE BACK THAT HELPS NUMB THE MOUTH AND THROAT TO EAT/DRINK??? OR IS THEIR NOT MUCH TO DO ONCE THE SORES R THERE??? WHAT IS THE SMOOTHEST WAY TO INTERVENE AND HELP???? I MEAN I CAN'T REALLY BLAME HIM FOR FEELING THIS WAY??? IS THIS AN EMERGENCY OR DO PEOPLE DO THIS OFTEN??? IS MISSING THE LAST WEEK A MAKE A BRAKE OF RE-OCCURING OR NOT??? I KNOW IT'S BEST TO DISCUSS W/ DOCS BUT I WANT YA'LLS OPINION TOOO....DAD WON'T ASK DOC AND IF HE DOES HE MAY NOT TELL US WHAT THEY SAID...

Wow, you've got a lot going on here.

I think you are doing a great thing by going with him to treatments. I had several friends of mine drive me the hour it took to get to chemo/radiation and it helped that I had people there to kick me in the ass to go...especially the last week of radiation and my final chemo treatment. I remember sitting on my bed crying, not believing I had the strength to do it anymore. As a former grappler/fighter this was new ground for me.

There is "magic mouthwash" and it does help numb the pain...from the sounds of things the dr's should look at adjusting his pain medication. Being out of pain will raise moral. It is very important to finish out your treatment protocols.

Where is he being treated? What pain meds/dosage is he on? Other medications like compazine will help with nausea...however the more information the Dr's have and the better the communication...the more they can help.

Hang in there

Eric

thank u for your s the quick response....he is at a great cancer center...Medical university of south carolina...luckily it's 8 minutes away...i know he takes liquid lortab for pain and i think he has other scripts for nausea...but he says he doesn't have nausea...his complaints have been the stomach issues and extreme tiredeness (expressed as being 'like a truck is parked on his chest') and overall 'icky-ness' he calls it...when i ask him to tell me what hurts the most i can tell he has a hard time trying to explain all his symtoms because; A) he does not believe in complaining/whining (grin and bare it kinda guy) and B) he is just too worn out to try and explain to non-cancer people
sometimes i wonder if i should avoid asking him how he is feeling b/c if it were me i would be like... I FEEL JUST AS SHITTY AS THE LAST TIME U ASKED....SO SAVE IT TIL 2 MONTHS AFTER SO I DON'T FEEL LIKE A BROKEN RECORD AND A WHINER
then i feel if i don't ask him he might think we have forgotten about him or whatever..ya know

i think i'm gonna print out some food ideas or any other info that might help and go from there.....unless u have a better suggestion....i'm wide open and i REALLY APPRECIATE!!!!!!!!

i wanna go pick up items for that choco-peanut butter shake (posted by christine B) and make it for him...even if he doens't want it....maybe he will feel better knowing that i'm trouble-shooting for him....

I spent a lot of time, in a fetal position on the bathroom floor with a towel under my head. I had all of those issues and try to block it out as some nightmarish dream. The last part of treatment is a SOB but it beats the hell out of oral cancer death.

Cancer fatigue is normal and it will pass. Stomach issues are common, as the chemo tears up the stomach lining. He should be on Famotodine or some other industrial strength antacid for that.

He HAS to complete treatment. Persons who don't have poor outcomes.

He's so close - he's got to suck it up and just do it. It will get even worse in the 2-3 week period post Tx. It WIll pass...

Does he have a PEG tube? This is the time to use it.

Give him your "permission" to complain. Men are a proud and stupid subspecies.

WOW! I think most people who go through this brutal treatment get to the point where your father is at. When my husband first started treatments he wanted to schedule them first thing in the morning so he could "get on with his day". We have had many a laugh at that one after the fact. His treatments were scheduled for 11am and on most days it was all he could do to drag himself out of bed and get there on time. After week 3 he could no longer drive himself and I arranged for someone to drive him there and back. Tell your dad that YOU WANT TO BE THERE and that you are doing it for yourself and not for him. I used to tell my husband that. When he would tell me that he didn't want to waste my time "dragging" me along to doctor visits etc. I told him it was for my piece of mind. It's so hard for men that are used to being in control to accept the fact that this is totally out of their control. He is so close to being finished. My husband's pain and discomfort peaked around week 5 and never got any worse after treatment. It didn't get any better for a few weeks but it didn't get any worse. Maybe your dad is afraid that it will continue to get worse and he can't bear the thought of that. It isn't the case with everyone. Tell him YOU need him here and that you will do anything and everything to make it happen and that quitting isn't an option, he has come this far and he can do it. Good luck!

I also think that the his pain management has been underestimated. Lortab is just hydrocodone and tylenol, so his whole pain issues are being dealt with a short acting, relatively weak pain med...look into having them prescribe at least oxycodone, both as a liquid and a time released for longer lasting pain control.

Gary is very correct in that CRF (cancer related fatigue) is a real condition and usually augmented by the use of opiate pain medication. Opiates depress your central nervous system and can reduce your heart rate and respitory systems...hence the truck sitting on his chest. It will subside once he's done with the pain meds.


Ensure Plus and Carnation Instant Breakfast is also a good liquid nutrition.

I did have an advantage going into treatment and that was this site. I knew the last few weeks at the end of treatment where the worst before I started. I read a good deal on this site and was mentaly prepared for being flat on my back for at least a few weeks.

The answer may be as simple as haveing your dad read this site. You will find many men here who will admit they were week as kittens for a while before getting back on our feet.

I didn't catch how old your Dad is but it really doesn't matter. sounds like no one told him how bad it really gets. He should read this and understand that radiation of oral cancer and chemo is burning and poisoning but it is necessary. Please tell him to come read this forum so he can understand that what he is feeling was perfectly normal for many of us here. You do need to go with him and also make sure he understands that if the cancer comes back because he quit going for treatment, he will be praying for these days. Trust me, the second time is much much worse and he should want to know he did all he can to avoid it.
Good luck
Charm

Hello,
I went thru the radiation and it is very bad. As for your Dad quitting, I am not sure. I know I was so sick I quit drinking and eating and ended up with a feeding tube in the hospital for a week. That was in 97, I have had cancer twice since, but only surgery. A lot better. Bless your Dad, I hope he is better.
Jean Hamann
Oregon

I can't agree more with what everyone else has said. It is very important to finish all treatments and if at all possible without any breaks. Like I think it was Gary said, if the cancer comes back and treatment wasn't finished or was delayed, it is tough to live with the "if only I pushed through it". I know my wife was basically in bed 24 hours a day except to get treatment and used enough pain meds, nausea aids, anti-diahrea medicines to survive. She ended up having about a week break near the end when the skin on her neck broke down too much and they needed to let it heal before continuing. Five months later, we found out that the cancer had spread and is now incurable. That week probably didn't make any difference but even if there was a 1 in 10,000 chance of changing the outcome, I wish we would have found some way to not take that break. At the time she was going through treatment, I was doing a lot of reading here and other sites and I believe I had seen some study that had shown a correlation between survival rates being much better having treatment completed within 100 days from surgery. Maybe you could call it tough love, but if at all possible, he needs to realize his job right now is nothing other than surviving treatment. I think it is a great idea if someone can go with him to treatment, in our case I value that extra seven weeks I was able to spend with her even if it was sitting in a waiting room.

Our thoughts and prayers are with you, your father and your family.

he doesnt have to be in this much pain. he definately needs better pain meds and i suspect that since he is not a "complainer" he isnt letting the docs know exactly how much pain he is in. that is where yall can step in to be his advocate. let the docs know exactly how much pain he is in, and all of his severe symptoms. the docs cant help if they dont know....
i literally had to drag andy out of bed and make him go to treatments...still do. do what u have to do, ur dad is in a bad place right now, he needs yall to help push him thru. this is when it gets tough on caregivers, but u can do it.

I came close to quiting a couple of times myself, but thought of my own "Daddy's Little Girls" and had to do everything I could to fight this disease. It was hell, but it was worth it to get to see my grandchildren grow up.
Pain management is critical. A very wise oncology nurse told me that my cancer wouldn't be cured any faster by my trying to tough it out. I took the pain meds and it helped immensely with my quality of life through the remainder of treatments. I was on the Duragesic patches for the baseline pain, supplemented with liquid morphine just prior to eating (i didn't have a PEG).
The pain meds do have a downside,in that they will frequently lead to terrible constipation... PAINFUL constipation, so they need to be on top of that.
I too was a stubborn old "non-complainer". I got over it, and accepted any form of help that was offered.
I wish there were some kind of medal I could award my wife for putting up with me and pushing me through treatment and recovery, but she seems satisfied to still have me around six years later.
Go to his appointments with him if you can, and make sure his doctors know what's going on. It is hell right now, but in the long run, you (and he) will be glad he saw it through to completion.

Thank you all for your responses. Dad did finish his last week of radiation. The doctor did cancel his last chemo session saying it was not necessary since chemo essentially 'cripples' cells for rad. to 'kill'. I'm not 100% sure if the dr did that solely for that reason or if it was some sort of comprimise but Dad had 3 radiations scheduled for after last chemo so he finished out his last 3 rad minus the chemo.
Anyways, I intially logged on to ask person/s (who are at least 3-4 months out from last treatment) the following questions:
-preface-(I know it differs from patient to patient) When do you typically start to feel the very beginning of getting better post treatment? Dr. says it doesn't get any worse w/ last 3 treatment but like a sunburn you will feel worse 1-2 weeks or so then you feel presently. I did mention to Dad in front of Dr. if he may need additional pain management and they both dismissed it. But after reading responses I'm more convinced it would help. Is it to late to mention again? How long do you need highest pain management? Do you begin to come down on meds a couple months after? a year? or always have it no matter how long it's been? (i'm not asking out of concern for dependency b/c isn't comfort more important?) On that note: is there a heads up he should know regarding physical dependenmcy where a patient would need to switch up if stops wprking as well?
Sorry if this is too long...should I be splitting this up in seperate posts for future refernce

About 3 weeks after treatments have stopped your dad will start to feel slightly better. It takes a while, slowly he will gain strength.

I had my 3rd round of chemo canceled too and so did a few others here.

Pain meds differ so much from patient to patient. My guess is that after 2 or 3 months he should be free from the meds. That also depends on what he has had done, I dont know about any surgeries, etc.

Please add a signature line so we can better answer your questions. Its in my stuff tab, then hit profile, its the block at the bottom of the page.

I'm three months out from rad. I think Christine hit it on the head time wise. Pain management is fairly personal but I was worried about the long-term dependency issue and wanted to get the pain meds done with as fast as possible without to much pain.

I was encouraged when I stopped the patch and then I took less and less hydracodone each day until I just stopped without a problem.

I had never been on pain meds for more then a few weeks (broken leg) so I did have concerns.

I did not have surgery so that may be a factor.

Kelly