All of the sudden

Steve5
Steve5 Member Posts: 147
in Head and Neck Cancer #1

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

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    start PEGging

     

    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

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    No PEG...

    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
    CivilMatt Member Posts: 4,722 Member
    #4
    Skiffin16 said:

    No PEG...

    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

    A shower

    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

  • sunshine_64
    sunshine_64 Member Posts: 50
    #5
    Just saw this posting - I

    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. 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #6
    blender

    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

  • Lisa0902
    Lisa0902 Member Posts: 3
    #7
    Peg tube

    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
    phrannie51 Member Posts: 4,716
    #8
    Ya gotta get something down

    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
    Steve5 Member Posts: 147
    #9
    Thanks Guys

    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
    Skiffin16 Member Posts: 8,305 Member
    #10
    Steve5 said:

    Thanks Guys

    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

    Peaches...

    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
    phrannie51 Member Posts: 4,716
    #11
    Steve5 said:

    Thanks Guys

    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

    I remember how hard it was

    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
    Steve5 Member Posts: 147
    #12
    Skiffin16 said:

    No PEG...

    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

    What is it with showers

    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

  • Steve5
    Steve5 Member Posts: 147
    #13
    donfoo said:

    blender

    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

    Thanks Don

    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

  • Steve5
    Steve5 Member Posts: 147
    #14
    CivilMatt said:

    start PEGging

     

    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

     

    Thanks Matt

    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

  • Steve5
    Steve5 Member Posts: 147
    #15
    sunshine_64 said:

    Just saw this posting - I

    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. 

    Doing the swallowing exercises

    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

  • Steve5
    Steve5 Member Posts: 147
    #16
    phrannie51 said:

    I remember how hard it was

    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

    Thanks P

    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
    spector551 Member Posts: 109
    #17
    Steve5 said:

    Thanks P

    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

    Lemon Water

    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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