hi Christine. I heard you are famous here on these boards! its comforting to know you have been through the same thing.

the residents helping my FIL out have said "he looks like what they study in their textbooks of what a patient should look like after surgery". The doctor comes in with a flashlight every day and checks the flap and says its healing well. yesterday apparently it started to pull a little bit, but my fiance says that "always happens"???

today was not as good a day- apparently my future FIL was a little more anxious and very drugged up.. prior to today though hes been walking and stuff and healing well and they had started taking out stitches. they also replaced the trach tube with a smaller trach that he can talk out of. they also took out

i dont mean to sound harsh, but i was wondering if there will come a time where the doctor will sit them down and give them more indepth info about what happened during the surgery, what stage of cancer he is in, what the prognosis is, etc...

Famous, thats funny!!!!

It sounds like your FIL is doing very well for having gone thru surgery so recently. This might help you with understanding the stage. My ENT explained to me that since my cancer was in the jaw bone, I was a Stage 4. However, it was caught so early it didnt even show up on the PET scan. I would have been a stage 1 but it was in my jaw bone.

When your FIL has someone there and his doctor visits, they should ask him/her questions. All of this should have been discussed before his surgery. Im glad you have found OCF to help guide you. Maybe it would be a good idea to write a list of all your questions and pass it along to someone in Syracuse. Then they could ask the doc directly. Once yor FIL is released from the hospital, he will have a follow up w/ the doc. That would be a good time to ask too.

When you have time, please add a aignature. It makes it so much easier for other OCF members to help you. Its under MY STUFF, then click on profile to add your info.

Hope I was able to help you.

thanks christine... i added what i know about him in the surgery. im in NJ and theyre in syracuse and i've been getting limited info. I think part of this stems from my fiance's family being unfamiliar with the medical field and possibly being nervous to ask questions. You're right- I am sure this may have been discussed before the surgery and it just was not communicated to me.

with the steel jaw, are you still able to eat or drink I see you have a PEG in now, but when you didnt?

i feel really bad that he might be coming home right around thanksgiving... it will be really torture for him to not be able to eat with us
i dont mean to be rude but do you have suggestions of how i can kind of "comfort" him in that regard? he said he would just be sitting in his room while we ate. What can i bring him that will help him feel included? do you miss food when you're at that point or do you stop craving things? thanks so much for your advice.

PS i made a signature... i realized its not as technically advanced as some others are like yours, im just putting in what i know right now. ill add to it more... thanks.

I eat smooth peach yogurt, chocolate pudding with whipped cream, milkshakes, Wendy's frosty's, mashed potatoes, mashed sweet potatoes, won-ton soup broth and french onion soup broth. I just bought some jello cups to try.

Im hungry most of the time. I watch others eat and wish I could have just one bite. TV is the worst, too many food commercials. I had the peg tube for 1.5 yrs which got me thru 2 rounds of oral cancer. I just got rid of it in Jan. Since I lost my teeth from the radiation treatments, its not easy for me to eat. I had planned on having dentures by the end of this year. Now that got delayed and Im hoping by next spring. Then I should be able to eat much more.

Since you arent that far from me the grocery stores might carry the same brand of yogurt. I eat LaYogurt smooth and creamy peach yogurt. Its the only kind out there that doesnt have a single chunck of fruit in it. It has a yellow wrapper. That would be a good starter food for him. Mashed potatoes with gravy are easy too, just so they are smooth without chunks. Im a stubborn patient and refuse to have the peg tube one minute longer than I need it.

Is he able to drink water? Has the hospital given him a swallow test? He doesnt want to eat til the doc or a therapist says its ok or he could choke.

Palmtree, he will be fine with his life as it progresses daily. Don't go by what he says he will do, but what he does do. We might have all had the feelings about food that you guy does, but we forgot them when the time was here. It is much easier to forget about the great foods and deserts at Holiday times than many imagine. I enjoy the odors as much as watching happy faces eating and enjoying. Have great Thanksgiving and enjoy. Give your man my best. EzJim... Make him a plate of dressing with gravy and other things he can handle. Watch the pie because of the sugar burns our mouths get.

hi thanks to both of you christine and ez jim!
he had water for the first time today! i thought he might have to use a straw or something at first, but he has was apparently able to just sip it. he was happy about that. hes expected to be discharged sunday or monday and will come home with the peg tube. im not sure if he'll be able to eat mashed potatoes and all that yet but ill keep it in mind as that time comes and he can do more.

we were told hes going to have to keep the trach in through radiation since the face might swell and it might be harder for him to breathe- is that normal?

also, although at first we were told the flap was healing well, now weve been told its pulling in a couple parts but theyre "waiting to see what happens"- what are the various options? my fiance says it will either take or they will 'cut some stuff out'...

future FIL came home monday 11/23 just in time for t-giving. today the visiting nurse was at the house, and he had a strange odor that we thought may be from the dead skin of the flap but it was much much stronger today. he also apeared paler and is having a hard time coughing up flem from his trach tube. they sent him to the ER in an ambulance because they are worried this may be a lung infection. he is stable now, nurse said this was precautionary....

future FIL came home monday 11/23 just in time for t-giving. today the visiting nurse was at the house, and he had a strange odor that we thought may be from the dead skin of the flap but it was much much stronger today. he also apeared paler and is having a hard time coughing up flem from his trach tube. they sent him to the ER in an ambulance because they are worried this may be a lung infection. he is stable now, nurse said this was precautionary....

i have a question re: swallowig. future FIL has trach and peg in now, supposedly he was told to swallow water but he doesnt want to. should be making sure to do this so he does not lose his ability to swallow? is this a possibility?

Yes, he must keep using his throat muscles or he will lost his ability to swallow maybe forever. Water is good. He also must keep opening is mouth as wide as he can, yawning helps, or he will get trismus.

What are you using to pull the phlegm out of his trach tube? Does he have a portable suction machine? A long handled QTIP may help as you can wind the mucous around it and pull it out as a string. Sorry he is having so much trouble and hope he is feeling better.

Take care,
Eileen