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Transformation of eating and drinking through mouth..

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

We are now told that the swallowing of both food and drink MUST start through the mouth soon. Swallow, Swallow, Swallow were the instructions.

As a caregiver, how do you convince/encourage your loved one to start doing this. He says it's way too sore in his mouth and his tongue hurts badly to drink anything, let alone try to eat. I thought maybe we could start out with coffee straws and try to control the amount in the mouth with releasing with his finger. Maybe tipping his head back and slowly let it trickle. I'm really at a loss with this whole thing. I can't imagine the discomfort of the throat and tongue. Not sure who the baby is here? LOL

If you have any tips to share to get this thing rolling, it would be much appreciated.

As always, thanks for being here.

~C

P.S. He was told that if he didn't start this process he could end up with his feeding tube for the rest of his life....yikes.

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Cris,

If he does not eat, the tube is always an option, but I highly doubt it will come to that.

Try all the soft foods (bananas, baby food, apple sauce, mashed potatoes, etc). You might give Jello a try, they way it melts in your mouth might work. Try Rick’s solution (body temp) foods and drink. If he has to force something (doctors orders) make it a protein drink, something that counts

Continue to try and find a solution to the pain, it should start to get dramatically better. I don’t want him to force anything, but he has to push himself (a little). If there is nothing obviously wrong and he is just sore, then expect it to get better. He can fall back on the tube until he is ready.

I did not eat much for 7 months post (I hated the feel and taste of food), but I always drank and swallowed (smoothie was my middle name). Lastly, don’t beat yourself up either, he will get there and all this will be a bad dream.

Come on buddy we are all pulling for you.

Best,

Matt

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Jan. 2011 I had been hoarse for 2 months, went to my ent dr and he found a golf ball size tumor on my voice box,biopsy,pet-scan and yes i had stage 3 Laryngeal cancer, when I was told that i was mad as h--- Then my team was set up,after 2 rads and my first chemo my hubby brought me home and I was zapped, so I laid down and took a nap and got up later to go to the bathroom i collasped in the floor and quit breathing. Two weeks later I woke up in ICU and couldn't talk, I had a trach and was on life support, again I was mad as h---. My hubby by my side, he said the tumor was blocking my airway, don't remember getting my first feeding tube.After a month in the hospital I was sent to a rehab nursing home so they could transport me to my treatments and teach me how to walk again. I had 38 rads and 6 chemo and I had a pic line also.The rads had burnt my throat and mouth and around my trach I was so nausated and the pain was unbearable. I could bearly drink or eat even tube feeding, pain meds and zofran were my friend, it got worse before it got better and I also lost 75#, after 4 months my hubby brought me home. I've come along ways, I still have my trach and after a year I can talk and eat and drink by mouth, never give up hope. God bless bjw1955

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

I had a special sink designated for this purpose. It had everything I needed at hand. I would even get the tops of the containers of salt/bicarb and magic mouthwash, cause I knew it would hurt like hell. Then I'd chug down as much ensure as I could, usually 8oz, rinse with the salt/bicarb to get the mucus and burning residue out. THen I'd take about 5-10 cc of magic mouthwash and swish it around to kill the burn.

It is important that he try. It is not necessarily important that he succeed. His mouth will permit him to drink when it is ready.

Pat

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Matt, I believe he has the PEG, they want him to ween off of it if I'm not mistaken.

Cris, like Pat said, you have to sneak up on the pain...

I too had a system that worked for me...as you know, I had no PEG, so this worked extremely well for me.

I would set out my Magic Mouthwash (actually mine was Larry's Solution #2..., not sure who the hell Larry is, but glad he left me his numb numb...)

Two glasses of water, two Ensures, a few sliced DelMonte Peaches, and a crushed up percocet or oxy in a half glass of water.

I'd take a teaspoon of the Larry's...give it a few seconds. Drink some water, drink an Ensure or two, more water, a few peaches, then chase it with the percocet, and more water...

The percocet was for any pain to come, and there always was.

I also went directly to take a long hot shower..., not sure why, but it always got me through the first few minutes of pain.

That was my system 3 - 4 times a day.

John

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

John,

The PEG is failsafe. I think he is approaching a time to start swallowing and eating. Hence, pushing himself a bit out of the comfort zone. I was acknowledging his PS statement about being on the tube forever, yeah that is an option, but not for him.

I think Pat is on the same page that I am about pushing through the pain and using meds to help push through. I could be a spokesperson for Magic Mouth Wash, but I have learned to temper my enthusiasm a bit. That is also why I said if it is too painful he can fall back on his PEG (temporarily).

You have way more experience than I do with H & N recovery times. I just felt baring some known medical road block; he is on the cusp of turning this corner. I admit, I never quit swallowing (mainly because of you and others), but when Cris talked about his emotions she could have been talking about me. I want to give him as much moral boost that I can.

Matt

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

LOL, I must have misunderstood what you were getting at.

It sounded like (to me) that you were saying the tube is always an option to take in enough food/water and available if needed.

I thought you meant if he needed to get one...

JG

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

I got ya Matt. You're right on with where he's at and knowing that PEG is still in place is quite comforting during these tough times. He keeps saying "today" he will start swallowing and it doesn't happen...he gets freaked about it. Then says it again the next day...still doesn't happen. I'm trying to be very, very patient with this. So any tips here are greatly appreciated. I really like the idea of the med-wash/food/med-wash. I think I'll run this by him.

Thank you all!!! I know you are all trying to be helpful and it's helping me greatly!

~C

donfoo's picture
donfoo
Posts: 1146
Joined: Dec 2012

Thanks for the details but what you describe sounds like hell. Just to eat some food and knowing you gonna have some hella pain after eating. You gotta be brave to endure the eating knowing what comes after. All the other commentary about swallowing and eating and the difficulties are starting to hit home.

At least I can eat like a pig until midnight Xmas night, then fast until going for operation to get the tissue biopsy and other exploration procedures.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I had exercises to do that simulated swallowing. I think they helped. Things like imagining you're swallowing a huge bite of something (two stage swallow), swallow with your tongue tip sticking out of your mouth , lips closed (just did this one again, and it's STILL hard).

I also timed pain meds. "Regular" meds about an hour and a half before meal time (height of my medicine's effectiveness). Viscous lidocaine just before meal.

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

swallowing is a must. problem is it is an automatic muscle function. if the function is not used it is lost.... sadly if it is lost it does not come back.

i have a friend that would not do the swallowing and was told the same. if you do not swallow you will end up with tube the rest of life.

they were right, he lost the swallowing function and now has feeding tube. it's been 7-8 years for him.

hint. go to a speech patholigist that has history with head and neck cancer. they can give you exercises to do to help.

another friend was told to push the swallowing... the more you swallow they said the faster it will tough'n up and be easier down the road.

good luck

john

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I'm sorry I cannot really comment on the feeding
through a peg because I didn't have one. I forced
myself to eat by mouth because like what has been
said I was scared to death about loosing the ability
to swallow and havng to have a peg the rest of my
life. Magic Mouthwash never worked for me, I was
a liquid hydracodone type of guy which did the trick
while I went through treatment and recovery. Now I'm
pretty much eating everything ( taste and saliva out of
whack but getting better ) and loving life once more.

Try, Try, Try to get water, soft food anything to keep
the muscles working.

God bless
Tonsil dad,

Dan.

Ingrid K's picture
Ingrid K
Posts: 810
Joined: Mar 2011

I started out "eating" crushed ice. Nothing else would work and nothing even smelled appealing. Hubby even went and bought a Sno Cone maker, so it would finely crush ice and I would eat it with a baby spoon out of a cup. It kept my swallowing muscles working during the entire treatment time and had the benefit of adding extra water. Before he got the sno cone maker, he put the ice in a ziploc and pounded with a meat mallet.

Wishing you the best.

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

I've jotted down notes here and hopefully be able to get some positive experiences to share with you all.
You're alll the BEST!

~C

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

He says he can't do the straw thing I suggested above because so much flem/mucus that he can't get the water through the straw through the flem.

Should I just keep having him do more rinses to get the flem out?...Really trying to help him figure this out. That mucus/flem stuff is so NASTY. He coughs it up constantly and it's so thick and stringy and he has to PULL it out sometimes.

~C

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Is he on Medicare? The reason I ask is they paid for a suction machine for me when I left the hospital after the mandible operation last year. It was bought for suctioning out my trachea through the tracheostomy but it also comes with a hard plastic "wand" that is used to suction stuff out of the mouth. It might be helpful in getting rid of his mucous.

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Just wasn't using it as often as he should. We're increasing that use now. From what I'm gathering from everyone here, the key is getting those salt/soda/water rinses down frequently. He's been swishing with it...just got to get it down the throat.

Good to hear this mucus should slow down. Makes sense that if tx is finished this should slow down. He can hardly talk sometimes because it's so thick and comes up so quick on him.

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

I can identify with that. Just like a banjo string. It is unbelievable how bad this stuff is. For a while. This will pass, probably pretty quickly. This is what I found the salt/soda solution to be helpful at. The worst of mine passed in a few weeks.

Pat

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