ok. looking for input from others on this.

husband had 2nd chemo treatment and 17/35 radiation treatment yesterday and today. He seems to be feeling pretty good honestly. So much energy over the weekend that he drove me crazy with his boredom! I'm not complaining but he's been bed ridden for weeks and now going crazy with nothing to do!

anyway, i noticed today that he is obsessed with details that don't matter. The car was parked in the grass after a heavy rain and it left some skid marks....frantic about it. we had flash floods and he's out on the porch washing it off? it's soaking wet from all that rain. he never does stuff like that even if it needs it. He looks in fridge for his Ensure. It froze again for some reason. I thaw it enough for him to use it. No...I don't want it. I just wanted to see if it froze.

is this just boredom or a need to feel like he has control over something? this is SO NOT normal for him. He generally stays in his bedroom shutting himself off from the world even when he felt good the last couple of decades so having him obsess over little stuff is strange to me. It may sound like no big deal to some but this is so abnormal for him.

Could be an attitude thing, could be that some med is making him restless. Like too much Sudafed or Benadryl can make you twitchy instead of restful, you know? Even some anxiety medicines have to build up to higher doses, but can start out making you twitchy on lower doses. (I hate those.) Couple that with a need to find control over something, and you can get some wacky behaviors. And if he takes anything for sleep, like Ambien ... well, that one's notorious for weird side effects if you don't sleep during the hours it's supposed to make you sleep.

Just off the top of my head, and things I've experienced myself.

he was more normal today. a friend mentioned the lack of control over this whole situation and knowing he is a control freak, it has to be hard to not orchestrate your life. I think it would be hard for even the non controlling type person to some extent.

Good news is that they want to do another CT scan as the cancer spots are shrinking and they want to do a better job with the radiation.

Since he will not hydrate himself, they are hooking him up for the IV drip on Fridays. It was his idea but the doc wanted 2 days a week. He said he didn't think he could handle having to sit for that twice a week. I will say Christine has been totally on the mark about the hydration and feedings. He was barely functioning for the first 3 weeks and now he has energy and color in his skin.

Your friend is probably right, when you have to control every one and every thing in your life, and something comes along that you can't control, it throws you for a loop. And add the fear factor, denial, etc. He can't admit that, in this case, the doctors and nurses know better than he does.

The liquid lidocaine and percocet were essential for me to get fluid down. I don't know how at this point your husband is going for fast food, I couldn't eat anything, smoothies, boost and water were all I could handle.

come to think of it, is it actually eating the fast food or just going out for it? That's something you could question right there, if you're not witnessing the actual eating. I go out with a friend or two for fast food right now ... but what that means for them isn't the same for me ... I'm getting soggy fries I can gum down, and beverages ... they are getting hamburgers and all sorts of stuff I can't handle. He might just be going OUT for the sake of going out, and maybe ending up getting only a shake, realizing that he can't eat what he wants when he gets there? (Which would be just sad. It hurts, running into those limits all the time.)

He isn't even drinking at this point! no eating now. He has to have IVs to get fluids into him. But in the beginning, he thought he was dying but when I wasn't around, he would drive himself to town and get fast food as that's his comfort....eating junk food. I let it go and never said anything. It was annoying to have to drive him 2 hours a day to treatment, listen to him moan and groan and lay in bed like he was dying and then see him sneak out for food. He acted like he couldn't even drive until he wanted to go get that fast food. He refused my healthier smoothies that he would drink before treatment. He's a difficult one and this is why I ask if stuff is real or not because it seems it changes day to day according to what he wants.

Tastes can certainly change very frequently for OC patients, especially when going thru rads or the beginning 6 weeks or so of recovery. Patients can feel ok for a few hours then feel horrible!!! They can go from being ok to barely being able to walk and talk.... especially if their intake is not even close to what it should be. Dehydration can hit fast and hit them hard!!! Yes, patients can change several times during the day from being ok to feeling really bad to back to ok and then go down hill within minutes. My kids have become used to seeing this happen to me where Im fine one minute and they can tell just by looking at me Ive overdone it and need to stop, relax, take meds and get fluids/food or something to help perk me back to my usual self. I still struggle with eating and drinking every single day. Without a feeding tube I never could take in enough.

A few things Ive seen in the thousands of oral cancer patients Ive been in contact with over the years.... intake is the most important thing patients all have within their control. I know it doesnt seem like it but watching closely to take in the basic minimums of 2500 calories and 48-64 oz of water every single day until at the very least they hit the one year anniversary of finishing their radiation treatments. This is 100% in the patients control and up to them. If they arent even close to taking in that much they need hydration supplements with a couple bags IV fluids every few days. If not, they will soon find themselves in the hospital for malnutrition and dehydration, its only a matter of time. Radiation is progressive, getting more difficult as they go thru treatments. Most patients think its over when rads ends but that is far from how it really works. The first 2 or 3 weeks after finishing treatments are the very worst ones. Around the 3 week post rads point many patients will one day wake up feeling almost ok, just slightly more like themselves where they can tell the worst is over. Dont let that fool you!!! The recovery phase is full of ups and downs with alot of setbacks thrown in the mix when intake isnt the minimums. All this is HARD on the body. Those patients who do not listen to the medical team only are hurting themselves. Its all about intake!!! I cant stress it enough. Those who skimp and take in say 1500 calories and 30 oz water thinking they'll make it up tomorrow are surprised when tomorrow never comes to catch up, they skimp more the next day and soon are caught in a vicious downward cycle where hospitalization is the only alternative to pulling them out of dehydration and malnutrition. Some patients are so run down from fighting the cancer while their bodies try to rebuild itself on significantly less calories and fluid intake will have the worst time of everything. I was one of those who had a much more difficult time than I could have if I had done better with my intake.

As a former smoker, I can tell you quitting is NOT easy!!! Patients of oral cancer MUST quit ALL tobacco use. If not they are sneaking forms of tobacco during treatments, they are fooling no one but themselves. It takes a life altering event to see the big picture and understand what is behind the suffering they are currently going thru. I was a single mother who got mad about my situation as I was on my way to the hospital for a feeding tube consult. My 17 year old son was accompanying me as he usually did to help drive. On that long 45 minute drive, the light bulb went on and that dose of reality hit me HARD!!! I realized this cancer situation I was in and thinking of how horrible a plastic tube sticking out of my stomach all because of my smoking. Then what really got me upset was as a single mother, I had done this to myself and I could leave my teenaged children alone in this world all because I chose to smoke. All this hit me as I was reaching for a cigarette in a brand new pack. I turned and looked at my sone and said "Thats it!!! I quit!!! I will never EVER smoke another cigarette in my life". My son was surprised and said I really hope you mean that mom. I said I just saw my future and smoking is whats going to be the cause of my death. I crumpled up that new pack and threw them right out the window. I have never touched any form of tobacco since that incident 11 years ago. Every single one person out of the thousands who Ive been in contact with over the years for oral cancer who was a tobacco user (a ny form .... even e-cigs!) and did not quit using tobacco has died. Its been hundreds who "cut back" or switched to something not as toxic (they think) that have struggled with quitting and gave in to the temptation has eventually developed recurrences and/or mets to the lungs and passed away. There were quite a few I was very close with who I begged to quit, offering them all sorts of options to get some extra help but they just never got to that rock bottom point like I did that day I threw out the cigs and quit for good. Of course it wasnt easy, the first couple days are always the worst. Every time I thought Id take a couple puffs, I told myself Id be leaving my children all alone way before they were old enough to be out on their own. I found what motivated me and used it as my motivation. The new e-cigs havent been around long enough for everything to be known about long term use has on the body. Knowing tobacco companies are who's behind the e-cigs and studies proving packages claiming low or even no nicotine are found to be false claims! E-cigs are NOIT ok as an alternative and neither is chewing tobacco or any other form of it. ALL forms contain known cancer causing chemicals and additives to get people addicted quicker, every single one! Only the person using tobacco can make up their mind to quit and if they are someone who now has cancer (probably from the tobacco), its only a matter of time before the cancer returns and is classified as terminal. How I wish there had been tobacco education like there is today way back when I was a kid trying to fit in. Back then we could go into the gas stations put or 75 cents in the machine and walk out with a pack of smokes, nobody cared about your age either. Very different world today!

I want you to pass this tidbit along to your husband.... I know all too well just how hard rads and chemo are... Ive gone thru it too and I didnt have a decent caregiver to help me. I had to depend on my teenaged children who had no idea how to handle me or my medical condition. The medical team providing care to the patient sounds like they are very familiar with what oral cancer patients must do to get thru treatments hopefully as easy as possible. If he doesnt turn himself around Im positive there will be many years of struggling ahead!!! Im not trying to scare him (and definitely do NOT want to scare you, Connie) but to me your husband sounds like he needs a good dose of reality and a small glimpse of his future. He MUST take sips of water every single day several times per day. If hes not, then his muscles will quickly forget how to function together to swallow properly and he will have problems that can take many years to overcome (if at all). Patients in the thick of things do not accept they are not in control of anything and MUST rely on his medical team and caregivers to get him thru this.

Yes, radiation and chemo are difficult... but its how you manage things and how much effort the patient puts into it. As the patients they are responsible for their own care too.... everything does not fall onto the caregiver. Sure the caregiver is a huge support and help but they can not do it all. The patient must step up and make up their mind to fight and do every single thing they can to get thru it as easy as possible.... that means eating and drinking or using the feeding tube for their nutrition. I caution you that if a patient is not swallowing, this will definitely come back to haunt him for the rest of his life! Hes still not to the hardest parts and if its this bad already then its obvious he isnt listening to what his docs say. Another sign is continued weight loss... that tells the doc all they need to see and hear, they know what their patient is doing and its NOT taking the docs advice, I know how much things hrt and how difficult all this is and I wouldnt wish this on my worst enemy, not ever but if the patient isnt putting in their fair share of helping and effort then its going to be a heck of a long road and it will be harder than it has to be. I know because I suffered and didnt do very well with my intake and boy did it show and everyone knew what was going on. It took hospitalizations where I felt so horrible I thought I was starting to die. It pains me thinking of anyone else going down that same dark path as I did.... its horrendous!!!! PLEASE help yourself to avoid those things by watching your intake and drinking sips of water at least 5x a day.

To Connie.... keep doing everything you can to help your husband get thru this and take good care of yourself too! He is soooo lucky toi have you and all the people who care about him stepping up and helping with driving. Fighting cancer isnt easy but together with a good medical team it can be done. Hang in there!

thank you Christine.

I gave up trying to help him or give him suggestions. I wish the nurse hadn't decided to not give him fluids on Friday like prescribed. I can tell he is not doing as well today but since he's not drinking anything, he is going to feel bad. He is one of the most controlling stubborn people I have ever met and while people say this will humble him, so far, he's still trying to control every detail the way he wants to do it. I believe what you have written and have found already what you have said to become true.

While I"m not big on the medical community and ways things are done, with this cancer, I feel he needs to do whatever they say. He has no choices left. It's just frustrating to sit back and watch him control.

Friends have been wonderful to go to dinner and coffee with me. Monday, I'm meeting one of his co-workers who has been a great support to me and I'm just a stranger to her. I want to meet her to thank her. You were correct to say that I will be surprised who will step up to be supportive and who won't.

I'm guessing week 5 is going to be a lot tougher than week 4 which was a breeze even with the chemo on Tuesday. I can tell as the day goes on, he is wearing down from 10 days of not enough to do and extra energy.

Connie, many caregivers have been in your position. I dont remember if I passed along this sneaky trick but it has worked many times to turn even the most stubborn patients around in ways you or the doctors never could do by simply talking to the patient. I suggest printing out select posts. The ones you feel would have the greatest impact on giving your husband a glimpse of how serious his situation really is. I recommend printing about a dozen posts. If you have a place you do your reading or looking up info that you know he will walk by or will sit near so he will notice your print outs. If you wear reading glasses, have them sitting there on the stack of posts like you were in the middle of reading the stack and had to put it down to tend to something else. U can even take it a bit further and have some of the most important things highlighted to draw his attention. By "accidentally" leaving the papers where you know he will find them and giving him the space to read everything himself that takes the situation away from anyone telling your husband what to do. Its coming from others who have gotten thru the hardest things most will people will ever do and turns it around into educating the patient and getting them to better understand their situation. Im going to edit my previous post to include more info and make it easier to read.

Make sure you do NOT print this post!!!! You want your husband to discover all the printouts on his own. Try not to include any of your posts! He needs to see how he has strangers from all over the world posting advice to help him. He also needs to see those people have survived this and recovered so they really do know what hes going thru and can help him with info. This trick has worked on the most stubborn of patients. Most have showed better attention to their intake after reading the "accidental" find. Even patients who have an aversion to learning about their illness have benefitted from reading posts. You can start out by letting him see you reading and highlighting things. You want him to see you with this stack of papers and observe how you are very interested in the print outs. I compare this trick to being similar to enticing a young child to do what you want without saying a word. Some caregivers have left the paperwork in the bathroom, kitchen counter, coffee table or desk. Just so its someplace he will walk by and you have made it look interesting where he gets curious what you are working on. If he asks, downplay it and say "oh this is nothing, just something I have found very interesting and important, you wouldnt be interested".

Just try it!

lol...very wise Christine.

I used to work with almost exclusively with hundreds of men at a dental school and I learned the way to get MY thoughts and ideas heard was to mention then and then never bring it up again. Low and behold, they would come to me with this GREAT idea! Men do like to think it was their idea not someone else's. Not criticizing them, it's just something I noticed working with then for many years.

I reread your other post and I'm going to print out parts of it as I don't think it would go over well to see my name! remember, he has little respect or regard for me. He is one messed up person and refuses to do counseling too...no surprise. Thing is, with counseling, he could have had a better life as he was dealt some bad cards as a kid.

Your support has meant the world to me. My heart hurts that anyone has to go through this.