Hi everyone,

Sorry to be so out of touch. I haven't posted for awhile because things have been very stressful on many fronts here. Overall, Roy seems to be making progress except in terms of his eating. He is able to drink Ensure and eat very soft foods like pudding, but that's it. If he tries to eat other things with more body, like mashed potatoes, they seem to get stuck and build up in his esophagus after swallowing. Then, they will suddenly decide to...umm...lets say...eject. Consequently, he gets 99.9% of calories from his feeding tube. Is this normal at 4 months post treatment? He has gone to a speech therapist but finds that the exercises do not help. At this point, would it make sense for them to do some sort of imaging to see what's going on in there? Thanks for your input, Laurie

Laurie,
So sorry to hear Roy is having difficulty eating. My hubby finished treatment right about the same time as yours, and has had a swallow test. I would highly recommend this. They video x-rayed him swallowing different foods and see exactly where the "hang up" is. We are waiting to get some targeted therapy for this.

He looks forward to being able to eat solids without washing down each bite with gulps of water -- someday hopefully. Anyway, I guess all I can say is this is a SLOW process, that taxes all our patience! Hang in there. We CG's have a tough job, but do it through our love.

Try putting a lot of butter on his potatoes and some sour cream as it melts into a soft thin liquid as the butter does. It makes it much easier to swallow but the poatoes, no matter how smooth and creamy they are feel like a mouthfull of sand. Good luck to you both.

Laurie, yes it is possible for someone 4 months post treatment to still be having problems eating. When I went thru chemo and radiation, I depended on my tube for about a year after it was finished. Here is a list of easy foods, maybe try some of them. One surprising food to try is canned peaches. They slide right down.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

I have found that peaches are great unless you get cling peaches. These are too tough for my nasty mouth but very ripe freestone peaches are easy even for me. these are my favorite fruit for now along with very soft canned pears.

I found that during treatment I lost my appetite completely. I had mastered a lot of foods prior to the treatments effects kicking in. I think the opening to the esophogus shrinks after awhile. I had the same problem where mentally I would want to eat more solid food but it just wouldn't go down the hatch wihout getting stuck. IT was very painful and it would make me throwup too.
Its so frustrating. I tried every day to just eat small bite of soft solid fruits and this helped. At first it burned like hell and it felt like it was gettinig stuck but I think it must have slowly opened it up more and more. It kind of felt like heartburn or indegestion at first. Honey dew melon and catelope felt nice because it was nice and cool and not too acidic. Pineapple too. I think Pineapple has some healing properties as well.

Keep trying. He could also have his esophogus stretched byt getting a procedure done. Many people here have had that done and it seems to help with swalloing. I'm so sorry. It must be so frustrating!

at least he is trying to eat, mine won't. He tries and than he goes a week or more without any kind of food except for his ensure or boost or his cans from his feeding tube. BUT he does drink his beer...I told him he can not survive on beer. I ask him to please at least do 3 of something a day before the beer.this is our fight every day...instead of me saying i love you in those words i tell him please stop smoking and drinking. it don't work I try like crazy, i even tried baby food my grandkids don't eat he won't even try. he does every now and than do a mcdonald's milkshake. he says food makes him sick, and makes him get an upset stomach which i tell him you have to keep at it every day until your stomach gets used to normal food again. I told him there are a lot of people from this cancer that never get the chance for real food again and he should feel good that he can eat again IF he wants to! I don't know what else to do...or say.

If I understand you correctly Suez that your significant other is still drinking and smoking then he is just wasting his life away as his cancer will most likely return and virtually nothing will stop it next time. Getting the right calories into his stomach should not your primary focus. Stopping his tobacco and alcohol is.

I cant eat mash potatoes either no matter what i add to them. Funny cos i thought it would have been the first food i could eat. I have tried it several times and have given up on mash, maybe its the starch in it making it very sticky. All i know is i felt so sick after eating it that i stopped trying.

I found that cooked noodles chopped up finely in broth are a really good start.

I admire all the CG on this website! You guys are so caring and patient!!! I went through treatment without much help from anyone and found it really hard (probably my fault since i have always been very independent). I wish now that i had got my hubby more involved during treatment to eased my load a bit.


Minh

Minh - Don't know if this would help, but my son put gravy on just about everything. I think it helped to slide down the mashed potatoes or whatever he was trying to eat. And -
Suez - I sure do second what Davidcpa says about stopping the alcohol and smoking! Not sure if this is correct but I've heard of some Radiation Oncology groups that won't even do the Rad treatments to begin with if they know the patient is still smoking since it just cancels out the effects of the treatment. Maybe if you showed him what David said, coming from someone other than you, he might take note and be better able to make an informed decision about whether he wants to live or not. I cannot speak from experience because I've never smoked, but it seems that for some people, it is so very hard to quit. I just lost a very dear friend of mine - a nurse and smoker - to cancer. Now - regarding the beer, you could be sneaky and substitute non-alcoholic beer? Sometimes us CG's have to be sneaky and I have no qualms about that.

i've tried to stop his drinking and smoking believe me i have tried. I'm a broken record. He's and addict and alchoholic...and before i met him he had gone to rehab and aa. nothing works. if he won't quit on his own and this isn't making him quit either than all i can say is i tried since 2007 when he was diagnosed with Non Hodgkins Lymphoma and he went back to it and i told him that it was going to do nothing but cause problems and lo and behold Cancer of the tongue! And yet after this dramatic surgery and all he still smokes and drinks and believe me I can't "bitch" anymore than I do now. I've actually have told him he may have to move out of my house because I am not going to watch him kill himself.

well he ate Chili yesterday!!! Yay! Not alot of course but he ate it and only complaint was that it was spicey. He had water to wash it down but only did it twice. My son is a Sous Chef and made the chili at work and brought us some and it was really finely made, finely as in good and finely as in he had his meat ground really fine as well as the veggies. Only thing you could see chunky were the beans. Which I mushed them up and picked the skins out(and ate em myself lol) he mentioned maybe some tuna salad which I made him this morning for later, one step at a time. the hard ones are the smoking and drinking, and believe me people you can tell me till you all are blue in the face, cuz it will match my face too. you can't make an addict stop unless they want to no matter what has happened to them obviously and he has't hit that yet. and he may never.

Hurray for the Chili! Your son must be some Super Sous Chef! And Suez, you are such a good caregiver to pick the skins out of the beans for your cancer survivor. You probably would peel a grape for him, too if that's what he asked for. I know what you mean about the smoking. My older son (not Paul, the cancer survivor) has smoked since his early teens and right now my "bitching" is down to 2 - 3 times a year. If I had big bucks, I think I would send him on one of those smoke-free month long cruises I heard about some time ago.

Thanks Anne-Marie. The only time I think he didn't smoke was when he was in a coma for 2 weeks with his bout of Non Hodgkins in 08.He's just simply stupid. He won't do anything to stop either. I have tried. I wish I could just give him a shot and stop him or secretly drop some Chantix or Wellbutrin in a drink! Something, but you just can't make somebody stop if they don't want to period. Everybody on here can tell me to make him stop but that is just impossible, you can't make a grown man stop anything he don't want to stop doing. It is his call, it's his life he can make either the right or wrong choices. Nobody is gonna stop him except himself. So if he has another bout he told me that "I" would be happy cuz I said "I told you so" and I said no I wouldn't be happy cuz said "I told you so" I'd be sad because you didn't listen.

Hi Suez
This is your disease too. Has your husband considered what he is doing to you and your relationship. Does he even care?

I found in my own situation, that I finally had a response, when I burst into tears and told my ALex that I was not strong enough to go through this again and maybe I should just leave now and save the agony. It hasn't stopped him yet, but it has slowed him down dramatically, he has started taking anti-smoking medication and he doesn't smoke in front of me. He has promised to stop when he has his teeth (next week).

I had tried giving him the facts (he has a 50/50 chance smoke free which goes down to a 25% chance of survival if he keeps smoking). I tried guilting him into it (I gave up smoking for him, why couldn't he give up for himself?). I tried belittling him (correcting him everytime he started a sentence with " I am intelligent enough to ..." by pointing out the ultimate stupidity of smoking). The last strategy nearly broke us up as my own rising blood pressure was finally matched by Alex himself.

Now maybe all of these strategies had an effect, but it was the "what about me" strategy that has finally hit home. Whether this is enough to achieve total abstinence, I don't know and only time will tell, but I continue to hope as I don't particularly want to grow old alone.

Karen

Suez, I strong suggest that you go to Al-anon. You are powerless over your husband's addiction but you are are capable of learning to live your life in spite of what his bad choices are. Unfortunately most alcoholics die of the disease or side effects of it. If oral cancer and non-hodgkins didn't get his attention, I'm not sure what would. Hope you will take care of yourself.

D

Suez - I totally agree with what D said about going to Al-anon. My ex-husband was an abusive alcoholic and I went to Al-Anon. When I left after that first meeting, I felt like a giant load had been lifted off my shoulders. After 20 years of marriage, I finally realized that I could not "fix him" and that it was not my responsibility to make him quit smoking. He died a few years ago. You are right, tho' you can't make him stop unless he wants to. The difficulty is instilling in him the desire to do so. What he is doing by continuing to smoke is slow suicide.
Karen - I like how you handled your own situation and the results that you saw. Hope they continue to be positive.
And one more thing - Suez, being a caregiver can be a pretty tough job, so think about doing something nice for yourself every once in a while.

just need to correct a comment I made in my previous post.

It is not that I don't want to grow old alone it is that I don't want to do it without Alex.

Re our partner's behaviours - Anne Marie is dead on. The only behaviour we can change is our own. Most of us caregivers would lose a lot of our stress and worry if we could only live with that truth.

oh btw he's not my husband, we are not married, and we both say Thank God we didn't because of the medical bills. He is on total disablitly has been since 08. I own my house(won it fair and square from my divorce!:))And believe me I do things for myself. Every Tuesday I go out with my youngest daughter to BW3's for Wing night! Since I really don't have to cook I go out to dinner with my daughters as much as we can afford, one benefit if that is what you would say, of Ron not eating. BUT last night he did a whole bowl of Maple and Brown Sugar Oatmeal! And loved it. and later he had a bowl of Rainbow sherbert! So he is coming around to eating, I just hope he does it everyday. He also did not drink! So...I can only hope. I'm OK all been with him 13 yrs and have done what I want to do when I want to do it, he does not tie me down. I got 3 kids and 3 grandkids so I am a busy person. He is a handyman and he does beautiful work around the house and yard when he feels up to it. And sometimes I just wonder where he gets the stregnth and energy.