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All of the sudden

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

All of the sudden this weekend the scractchy throat  and loss of taste has prevented me from eating like a did a couple days ago - I am only 13 treatments in  - and now even soups are not working - I am guessing I will need to start using the PEG tube now for food - so looking for recommendations, help, sorry - don't want to panic, but I am hungry - and ice cream and yogurt does not work all day - I did manage one plus, added some lemon juice to water and it is easier to drink - can see weight loss already just over the last 2 days

Thanks

Steve

 

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

 

Steve,

Don’t put away the eating bowls yet.

When I was using the PEG it was customary for me to drip 2 cans of Jevity at a  time, but you can tell by reading the posts, if you can blend it, you can PEG it.

Even when I was using the PEG I always managed to drink one meal a day.  You must try to continue to drink water both for swallowing and hydration (hydration by PEG ok).

As one that has been there, eating and drinking can be a challenge.  Throw down (or pick-up) the gauntlet and accept the challenge.

Matt

 

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Drinking much more water today, like Don said the lemon is a little acidic but i just grin and bear it - wanted to say thanks for telling me to pick the gauntlet up and do it - I always thinks back to something you said to me early on - "but first"  so now I am starting to know what "but first" is all about -

Have a great day

Steve

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I didn't have a PEG...

Somewhere around where you are I decided that the discomfort and low calorie intake of what I could get in wasn't worth the effort.

So I switched over to only Ensure Plus, but could slide a few Del Monte Peach Slices down to keep the muscles working...

My routine two - three times a day...

And I'd set this up and do the same sequence each feeding...

A teaspon of liquid hydrocodone, oxy, whatever I had prescribed, that gave me about 10 minutes to do what I needed...

One - two Ensures, a glass of water, a few peach slices, more water, and kill of any additional Ensure left, a cruched percocet in a half glass of water to kill off any paon to follow once the liquid meds wore off...

Then for me, not sure why, but a good long hot shower that seemed to soothe the pain until the drugs kicked in...

JG

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

Skiffin,

The shower sounds funky but fun.  Would a short, hot shower work?  Do you soap up or is this just a water thing?  I did enjoy a long, hot during neck burn, does that count?

Feeling clean,

Matt

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

What is it with showers - it does feel ssssssooooo good - I stand in there for a little bit afterwards -and for some reason I think of how comforting a baby must feel in the womb - warm and comforted - a few minutes of comfort then out and making it through another day - thanks JG - I wish I could get fresher peaches though this time of year -

All the best, and I am starting to drink the ensures today

Steve

sunshine_64
Posts: 27
Joined: Apr 2012

Just saw this posting - I don't know what you decided, but I was afraid that if I did the peg I would lose the

ability to swallow. I would try the swallowing exercises just in case. I

 

Shower works. Also hot tubs, moisture wraps (at drugstores, with funny little pellets in them),

and hot, wet towels.

 

Good luck and let us know how you're doing. 

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Yeah I am doing them, stretching my mouth open as wide as I can, pushing on my tongue - swallowing hard - geesh - thanks!!!!!!!!!

Doing better today - just need to keep drinking and eating,

Have a wonderful day

Steve

donfoo's picture
donfoo
Posts: 1325
Joined: Dec 2012

Steve,

If solids are starting to hurt, then pull the blender out and start experimenting with things to blend up. Matt is the smoothie expert. I scream protein powder in any liquid to get down the gullet. You can also baby grinder foods into a texture easier to swallow. You need to keep up on liquid and nutrition and keep the pain under control.

I would load up on the narcs before trying to eat. Once the general pain was under control, I would use magic mouthwash. Then use liquid lidocaine to dull the mouth then feed as much as I could stand. For me the time windows was not all that wide so it was a planned event to get as much in as I could before the pain really kicked up.

Lemon juice is acidic I belive and that might cause more irritation. check that out.

Hang in there,

Don

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Thanks Don - last week the nutritionist mentioned taking some kind of oxy something 30 minutes before eating - so I am going to see about that tomorrow to make it easier - I have whey powder and were going to grind up  or whip up the vegetables and potatoes and things for easier eating and see how that works - I guess its just that in the winter I usually don't think of smoothies - not a huge fan of them to begin wiith - really appreciate your help here - going to do it

Thanks

Have a wonderful day, thanks for picking me up - and what seems like so soon in the race

Steve

Lisa0902
Posts: 3
Joined: Dec 2013

When my husband had a peg tube I mixed baby food with the Ensure. I usually used the fruit baby food and the cereal baby jars. He gained weight too.

phrannie51's picture
phrannie51
Posts: 3848
Joined: Mar 2012

via your mouth and throat everyday....be it ice chips, or plain water, or water with lemon....warm water with honey....lean on your PEG to get yourself the calories you need to ingest everyday.  It doesn't matter how it tastes, cuz you ain't tastin' it :).  You are reaching the point in treatment where nutrition and hydration are your job....and that's how you have to look at it....

p

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Thanks Guys, you have really pulled me up, I am dirnking the lslightly tasting lemon water and can get alot of that iin, eatign peaches adn trying oatmeal this AM, I think what happened was as you all said I did not get enough water in the last two days, so later yesterday the lemon water started going in really well and all night, going to see i fmy better half, which she is, will puree and fix me all kinds of stuff to see if I can keep eating which she will, she si my angel here taking care of me,  I can eat eggs, I guess it is just like you say you have to do iit, I was just getting tired of smoothies after one day - Okay, again thanks you really pulled me back up here and I feel so much better mentally and physically this morning - I am amazed though how the chemo wiped me out of my normal energy llevel -also I am writing this without my glasses this morning so please excuse any mispelling, it is just a little blurrry.

Love you guys thanks!!!!!!

Steve

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

LOL, I get a lot of static for the peaches..

But for me, the syrup aided in helping them slide down, so it was minimal effort, but still exercised the swallow muscles...

John

phrannie51's picture
phrannie51
Posts: 3848
Joined: Mar 2012

for me to make the jump (mentally) from the idea of "caring for self" going from the daily mundane things like showering, eating breakfast, getting sleep......to HAVING to literally "care for self" in every little facet of my thinking.  From eating on a timed schedule (instead of when hungry), to pouring water down my tube (or throat), creaming my neck, resting when tired instead of plowing through on will power....etc etc etc.  It was a hard switch to flip on.....to see my world through a different peephole. 

Part of why you may be feeling better physically is all that lemon water you're getting in.  I got massively dehydrated one time and I never felt as crappy as I did those two days.....I was sick, weak, my muscles ached, I couldn't see very well.....the only thing I didn't feel was thirsty (go figure).....dehydration is the worst thing that can happen during treatment.

p

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Wow all you guys are the best - you are so right that this was something I couldn't just push through like I usually could - not use to that at all - thanks for your sage and compassionate words and for the straight talk as well - I see what you mean about having to care for yourself rather than just doing it everyday -  all the responses really picked me up  - heh gotta go fill my water bottle again :)

Have a wonderful day

Steve

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

Steve, lemon water will work fine for a good while. You will find, however, that our treatment changes some things on a daily basis. The lemon water you may not like or may be too acidic to intake tomorrow. In that case, you just have to power through with regular water... you have to MAKE yourself do it. This is a concept that I am just now trying to conquor as well. I am pretty much at the point of MAKING myself do everything - drinking, eating, etc. I don't like it lol. I almost wish they would give me a feeding tube, but I CAN'T stop intaking food by mouth because I can't do the swollowing exercises - they make me gag, lol.

 

Push through brother and God bless,

Jamie

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