Hi all,
I'm writing on behalf of my husband, Craig. His Dr. gave him the clearance, a week and half out of treatment to try and eat whatever he wants. Her only stippulation was chewing it up well, adn drinking fluids to help it go down.
Yea! BUT-- Craig seems to have a serious mental block regarding food. His appetite is elusive to say the least and sometimes he even throws up after trying to eat. Other times he's fine.

Any suggestions out there? How should I handle this? I don't want to be the food natzi, but I also want to help him follow the Dr. suggestions, and encourgae him to eat as much as he can.

How much should I puch? When should I back off?

Steph

This is one of those things that happens when it happens. It isn't a mental block. Things don't taste the same, appetite isn't the same, favorite foods are not the same or are not actually doable given their dryness, solidness, etc. - so you can't push. LIfe will be a mix of canned supplements with soft, very wet foods for awhile to come. I did only soups and really wet scrambled eggs for a long time, then mashed potatoes with tons of artery clogging butter, canned fruits like peaches in heavy syrup... But he is going to set the pace, and it will eventually all get to his new normal. In the meantime all you can do is count calories and nutrients. See that he keeps both up even if it's via cans of Ensure, Instant Breakfast, or whatever. If he throws it up, deduct calories, give anti nausea drugs, and when they kick in - try again.

Hi Steph, i feel for you i really do you sound just like my husband a month back.
I agree with Brian in as much as its no use pushing getting mad trying to force it my hubby tried that with me it just upset me more.
Like Brian said he will find his new normal, it takes us all different amounts of time, i was just like your hubby no appetite, it's so hard to remember what something tastes like only to try to eat it and its nothing like you remember, it's very depressing, the thing that changed for me was i started to get hungry out of no where i was so hungry i had to eat start with bland broth type soups and slowly he will mend.

wishing you luck...Debz

Steph,

Back off (said in a nice tone). He's going thru a very tough period in the post Tx era. For most of us the 2 to 3 weeks post Tx were our worst. I really didn't feel like eating anything until I was swallowing 3600 cals a day of Carnation VHC. After a solid week of that I started to add some mashed potatoes w/ gravy, fruit cocktail, mac n cheese, etc.

Please remember that his taste is nothing like it used to be; his dry mouth is horrendous; he's probably still having a gag reflex when swallowing and he's probably weak as a kitten. His mental state is all confused as well. Not only is he dealing with all of the above he also is dealing with the cancer issues of am I cured; will it come back, will I ever be normal again, etc, etc. His mental plight may even get worse before it gets better as many of us suffer some depression months after Tx ends.

You know it's not like recovering from a bad cold or the flu. Just because Tx ends he won't feel close to normal until many many many months post Tx and he will recover in tiny tiny steps and some recovery moments will go undetected for weeks.

Give him all the room he needs to get thru this. He will finally start trying things and most will be horrible compared to pre Tx but then he will start to settle for things that aren't "bad". He will then eat those things for periods of time clinging to them like a child's security blanket until he finds something else that he can tolerate or even "enjoy". For me this was the most challenging part of the recovery, followed closely by the dry mouth. It wasn't until my 16th month post Tx that I finally became satisfied enough with my recovery in those two areas that I didn't care if they improved any more.

He will find his own way of dealing with his recovery and he will constantly find his was of adapting to how he progresses along the way.

Thanks y'all, for all the advice. I'm trying really hard to not push, but rather support and encourage him. I just wanted to make sure I was headed in the right direction. No pushing from me. I've been tryng to preach patience, as he is growing impatient with his recovery.
love,
Steph.

HI ALL,

I underwent a reconst. surgery of free flap on my left cheeck after a mandibulectomy.i cant speak and eat semi solids because of restricted jaw movement- jaw is slighly not aligned. Will i be able to speak and eat in near future. MINE WAS T3MOX- DIFFRENTIATED sq. cell carcinoma, pl advise
mukesh

have they suggested therapy to help? How long ago was your surgery? Sounds like trismus (restricted jaw movement) which is common and takes being diligent with exercising the jaw to keep it opening and to get back what you have lost. There are gadgets available to help with this but my dentist said best way is to use thumb and forefinger to push them open, and then use tongue depressors to hold the jaw open several times a day.

i would speak to your doctors and ask for help in regaining the movement in the jaw and then really be proactive in the exercise plan. it won;t be comfortable, but it will be worth it. i wish you the very best through this difficult time.

i remember right after my surgery while still in the hospital they were telling me i could eat soft foods. because i was not eating them they increased the menu to include semi soft foods ... so i had MORE foods to say no to LOL ...

my husband was frustrated because i was saying i could not eat anything. he finally got so frantic he called his mom who is a nurse and asked her to come visit to preach at me ... and when she got there i explained i was trying but couldnt. no one seemed to understand it was not that i did not want to but i knew i could not get it down.

my throat was sore, i had this prosthetic in my mouth that i could not maneuver food around and my entire mouth felt like it had been thru a meat grinder.

well later when i got home and looked around, hubby could understand. i had stitches allo over including on my lips which they accidently cut in surgery, on my tongue, and my tonsil had been cut for some reason i still have no idea why when it was my upper right jaw that had surgery ... anyways ,.. i am just now three weeks later able to get more down but it has been sooooo slow ... i was thrilled when i was able to mush up brocolli and cauliflower enough to get it down ... wow! something that was not sweet!!!! i was in heaven (not a sweets person so pudding has been boring for me). i was able to get mac and cheese down today so one more step ahead .... but anyways i said all that to say this ... it hurt my feelings when hubby was after me to eat when i was telling him i couldnt. i am all for encouraging people to do what they can but pushing them when they say they cannot does nothing but hurt and cause you to feel like quitting. i like to know people hear what i tell them, understand and believe me. if i feel they are teaming up against me, i just give up. people generally want to get better and willo take steps at their own pace to recover ... but each one does it at a different pace.

i wish you and hubby the very best. i am sure he will have you cheering him on soon once he gets to that point where he sees he can do it.