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Worried, dad still not eating

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Hey everyone, 

Sorry to see some of you have been dealing with bad news while I was absent.   I read a few posts that sounded very positive as well.  

I'm wiring tonite bc I can't get over worrying about my dad.  He's still using peg tube, he's only tried a few diff foods, pudding and jello, but complains that it burns then refuses to try anything else. 

Has anyone else experienced this?  Any tips would be really helpful! 

 He even tried a lil honey and said that burned too :(

Thanks in advance,  you all are great at helping me thru these times and dad! 

phrannie51's picture
phrannie51
Posts: 3726
Joined: Mar 2012

quits burning, he'll eat....truly....he is hungry for real food, but when the mouth is still raw from treatment, it's more than just effort to to get food down, it's masochistic.  As long as he's taking water/milk/something via his mouth to keep his swallower going he's going to be ok.  I was patting myself on the back getting Boost and Ensure Plus down the gullet 3 weeks after treatment....nothing else tho (and I was just getting past the last chemos....rads were already 2 1/2 months behind me)....

He's going to eat when it's not so painful...that's why they leave the tube in for as long as a person needs it.  I didn't get mine out until the middle of November....and I had to cheat to get that done.

p

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Phrannie, Im just concerned bc it seems he's hardly sipping water.  Even milk burns. This just sucks :(

CivilMatt's picture
CivilMatt
Posts: 2959
Joined: May 2012

Cherie,

I did not eat real food seriously for 7 months.  I had such an aversion to the way food felt I chose (and happily) to drink smoothies for most of my nourishment.  I’ve said this before, I once put a can of Crisco shortening on my parents table and said “this is what food feels and tastes like to me” and I wasn’t kidding.

Our taste buds go wacko to taste, feel, spicy, mild, sweet, salty, hot and cold.  It takes some experimenting, but you usually find some foods palatable.  As long as he is using the PEG he should be alright.

At 7 months it was just like a switch was thrown and I went back to eating, the terrible awful feel was mostly over.

Matt

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

I suppose maybe I'm rushing dad,  but it hurts to see him reject and not even try things.   How does he know that without trying if I fixed some eggs or mashed taters that he can't do it.  Thx for all your encouragement.   I guess when the doc said he may have to have the tube for a few weeks, I literally thought a few weeks not month!

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

It takes time to get to the point of "wanting" to eat solid food. I went close to 2 months prior and post treatment before I put anything in my mouth other than water. Everything burned and it hurt to swallow for a long time. Even when I started eating solids, it wasn't enough to sustain me and I still used the PEG for a bit, 

He'll get there. It just takes time. I also used the Magic Mouthwash for quite a while due to the "burn". Even now, over 4 months out, I still have sensitivity to cold and hot in my mouth and teeth. 

Positive thoughts and prayers

"T"

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks T, 

I hope that time comes soon... I get teary eyed thinking about it cuz I just love dad so much.   Afraid of seeing things get worse,  I want to see them get better.

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

cherie, try not 2 worry.  i went at least 2 months using only my feeding tube.  it takes time.  he'll get there.  the recovery stage of cancer is a very slow one  :0(

djd

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks for the encouragement.   Can't wait to see more improvements with dad. 

TracyLynn72's picture
TracyLynn72
Posts: 710
Joined: May 2013

Treatments are so strange and everyone is so different!  I did HORRIBLE with rads, but was able to start eating some food pretty much right away.  Some people don't have near the problems I had DURING treatment, but are slower to start back on food.  As long as he can swallow something..water, Ensure, milk, something....and uses his PEG, then he will get the nourishment his body needs.  The burning in the mouth is no joke.  I ate a bite of a Cajun fillet biscuit the other day and broke out into a sweat, drank 2 glasses of water and thought my mouth was literally on FIRE.  I like spicy, but won't be trying that again for a long, long time!  Also, my taste buds are very different now.  It was hard at first because things that were my "favorites" before are gross to me now.  Give him a hug from us and make sure he keeps drinking. 

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Yes, your dad will definitely gets better.  He still has his PEG with him and that will definitely helps him alot even if he's not eating

from his mouth.  I do not have a PEG during treatment and post treatment was "hell" as I do not wish to open my mouth.  I force 

myself to eat for survival and to remain positive. For the whole treatment, I lost about 1 kg and has been drinking Resource milk

during last 4 wks of treatment and 2 wks after treatment.  Am glad on 5th wk post tx, all my taste buds are back.  Maybe you can 

try asking your dad sipping some rootbeer.  It really gave me booster cos somewhat I get some taste.  Like what Tracy said, I also

like spicy food but not for now as it really burns but I never stop trying.  Your dad will definitely gets better.  Saying prayers to him.

 

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Nelson for your encouragement.   The problem I'm having is dad doesn't want to try new foods also.  What's resource milk?   Is that organic or something I need to go somewhere special to get.  He tried honey but said that also burned.

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Hi CherieLW

My wife & myself understand how sad if one refuse to drink or eat on his recovery journey.

I gulped a total of 7 cartons (each carton = 24 packets) after I got home from the hospital & during the period of tx.

Honestly, I don't like the milk RESOURCE but I need to have this nutrient supplement as my meal & for my survival.

My wife said I'm still young and have many places to go and many things to see .....

After tx, the skin in the mouth down the throat becomes very thin & sensitive thus anything burns.

Tell your dad that's the initial stage and don't give up liquid at all.

 

If you don't have RESOURCE milk there, ENSURE or other nutrient supplement will be good to keep your dad to

overcome those "discomforts".  When he gives up tell him you will not give up to persuade him to try 'cos you

love him so much & will see him thru on his recovery journey (hope that will move him on).

U take care too, the caregiver also needs strength to move on with the patient

FYI : Resource is a product of Nestle & hope you can find it soon

 

Nelson

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks so much for all the info and encouragement!   

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Tracy,  I will!  I know he  doesn't like to talk about it with me,  he shuts down.   Just want to make sure he's taking care of himself. 

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

In November 2011, I had my cancerous epiglotis removed..that is the flap of skin that keeps food from going into your lungs..I came home with a feeding tube through my nose...for 3 months I had only boost or ensure plus..I made myself drink water so I could work the swallow muscles. The 4th month, my Dr removed the tube, I started very slowly eating soft foods...an egg yolk was a full meal.I did this for a solid year, gradually eating a little more..it wasn't because my throat was sore, I just could not swallow the food..I ended up in the hospital on New Years 2012 with aspiration pnenomia..October 2012 we went to my daughters in Chicago and I took a very small bite of pork roast...it went down, from that point on, I eat whatever I want..nuts, popcorn, veggies,etc

I did not have chemo or radiation, mine was radical neck dissection by di vinci robot~~~after months of swallowing exercises and voice exercises, I got to my goal of eating real food.

Bless your heart, your Dad will get there, just let him go at his own pace

I'm now 1 year 9 months out and pretty much back to normal~~or as Skiff says abi-normal Laughing

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Grandmax,

I've read a lot of your posts on here and like everyone,  you've been through a lot despite the chemo and rrads.  Thx so much for your words and encouragement.  Each day seems a bit better!    One step at a time. 

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Cherie,

Search around for the soft foods list. I was surprised that  "mashed taters" was not considred a soft food. I wondered why I had trouble with them myself then discovered the list which had items far more comforting to get down the throat.

It seems your Dad has been getting sufficient liquid daily but stay on top of this. Of all things that is the most critical of all otherwise he's off to ER with dehydration.

 

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

The burning makes me think it's thrush. I had 3 or 4 bouts with thrush during and aftet tx. The tongue can really burn and hurt but a quick fix with the right medications. If not thrush, is your Dad using magic mouthwash? That might help but won't cure thrush. I'd call the RO. Enduring pain that can be dealt with is unnecessary. 

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Don, I'm def keeping him hydrated.  Bw me and mom lol.  It's so hard to go through this with a loved one, but I know things could be a lot worse.  I can't wait for more improvements!   Bless you all!

MarineE5
Posts: 754
Joined: Dec 2005

Cherie,

"T" mentioned something that is important, hot and cold foods. After treatments, our mouth, tongue and throat are pretty raw and act as if we are a new born once again. Your Dad might want to try eating something soft, but at room temperature. I am out of treatment 8 1/2 years and I still take caution when eating anything that I see steaming, I let it cool down...cold foods, well I let them melt a bit in a bowl. The hot and cold feels as if our mouths are burning....everything at room temperature for awhile.

My Best to Both of You and Everyone Here

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks for reminding me!  There's so much info on these boards, is easy to overlook things! 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Cherie

Don't panic !!  As long as your dad is using the PEG for nutrition, he is doing fine.  The eating of regular foods will come back.  I had my PEG for 18 months (but I lost 75% of my tongue, so swallowing and eating took me a lot longer to re-learn).

The biggest worry now should be forcing himself to swallow.  As everyone has said, you HAVE to keep the swallow muscles working or they will atrophy pretty quickly.

I lived on crushed ice (snow cone consistency) for months.  I would sit and "eat" it with a baby spoon.  It forced me to swallow and gave me additional water.  Maybe dad could give that a try.  My hubby actually went out and got me a mini-Sno Cone Maker from Bed, Bath & Beyond.  Worked like a charm.

Good luck to you and Dad !

 

 

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Ingrid! He had trouble with too hot or too cold foods.  I have him a list of foods everyone mentioned awhile ago.  I hope he starts soon!

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