help please, 3 weeks since treatment finished

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Robyn64
Robyn64 Member Posts: 124
edited August 2014 in Head and Neck Cancer #1

Hi there,

I haven't been here in a while. I have now had my radiation and chemo over 7 weeks. It now been 3 weeks since it finished.

I have a peg and am still using this. How long before you are able to eat again or does it seem too long for me ?

I have been on morphine which I have now weaned myself off , one side effect being loss of appetite. I'm really worried why I haven't started eating, I'm drinking fine. 

Should I have started eating by now ? My throat is sore but doesn't hurt when I drink. I'm getting very scared.

Am asking because Dr's seem to think I should be eating something within 6 wks of treatment ending and that's when they take the peg out. But they want to make sure I'm eating by then and I'm really struggling at 3 weeks.

Help please

Robyn

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    hey Robyn

    Be of good cheer.  None of this stuff is set in stone.  There are plenty here who have their PEg for a long time after rads end.  Months or even a year isn't that uncommon.  If you are swallowing liquids now you will eventually get there.  Obviously the general principal of rehabilitating the swallowing mechanism is to gradually increase the consistency of things that you are swallowing, but they have therapists who can help you with this.   You don't have to reinvent the wheel.  Others will chime in, but be reassured your experience isn't uncoomon.,

     

    Pat

  • ratface
    ratface Member Posts: 1,337 Member
    #3
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    longtermsurvivor said:

    hey Robyn

    Be of good cheer.  None of this stuff is set in stone.  There are plenty here who have their PEg for a long time after rads end.  Months or even a year isn't that uncommon.  If you are swallowing liquids now you will eventually get there.  Obviously the general principal of rehabilitating the swallowing mechanism is to gradually increase the consistency of things that you are swallowing, but they have therapists who can help you with this.   You don't have to reinvent the wheel.  Others will chime in, but be reassured your experience isn't uncoomon.,

     

    Pat

    you are doing better than I did

    Robyn you are doing just fine. Probably right in the Norm. I still had pain when I swallowed and you don't. Keep drinking liquid and start drinking your supplements. This was my egg drop soup period. Can't stand it now! There are recipies in the super thread for smoothies and such. It's fine to still be on the Peg. Mine was in for 9 months. I lost fifty pounds from diagnosis and during my first year. How is your weight?

  • Robyn64
    Robyn64 Member Posts: 124
    #4
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    ratface said:

    you are doing better than I did

    Robyn you are doing just fine. Probably right in the Norm. I still had pain when I swallowed and you don't. Keep drinking liquid and start drinking your supplements. This was my egg drop soup period. Can't stand it now! There are recipies in the super thread for smoothies and such. It's fine to still be on the Peg. Mine was in for 9 months. I lost fifty pounds from diagnosis and during my first year. How is your weight?

    thanks for replies.

    I have lost about 10 kgs which I know isn't much. I'm just wondering that I'm getting all this pushing to start eating. Husband is listening to Dr's who say I should be eating at least soft foods by 6 weeks, so he is now pushing this and I dont think i can and it's making me very upset.

    The smell of food, makes me really miss it but have no urge to eat it.

    Coming off morphine I think I can feel the sore throat more now and this is upsetting me, I didn't sleep well last night. I just wish it was all over.

    Very very upset,

    Robyn

  • Guzzle
    Guzzle Member Posts: 710
    #5
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    Robyn64 said:

    thanks for replies.

    I have lost about 10 kgs which I know isn't much. I'm just wondering that I'm getting all this pushing to start eating. Husband is listening to Dr's who say I should be eating at least soft foods by 6 weeks, so he is now pushing this and I dont think i can and it's making me very upset.

    The smell of food, makes me really miss it but have no urge to eat it.

    Coming off morphine I think I can feel the sore throat more now and this is upsetting me, I didn't sleep well last night. I just wish it was all over.

    Very very upset,

    Robyn

    Experiment

    Robyn, well done so far. Never had a peg. Take this at your own pace. You can drink so why not start on broths or soups and slowly increase thickness. You can then add small pasta pieces or dip bread. Only do what you are comfortable with. Porridge or smooth cereals may work with whole milk? Good Luck, Gary

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    Don't be scared....

    if you couldn't swallow, that would be scary.....but you can, you just don't have the "urge" to eat...right?  I'm reading that as "not hungry"....everybody's timeline is different (my Dr.'s timeline said to keep the tube in, when I wanted it OUT....ended up cheating on my weight in order to get it removed....that was was 3 months after treatment).  I practiced eating.....like Ratface, I did soup....soup is liquid, so you can probably get that down....just start out with 1/4 to 1/2 a cup.....see how it goes down.  It may wake up your appetite, but even if it doesn't.....as long as you don't feel nauseous, it's a start.

    You're still in the baby part of recovery.....and I think it's wonderful that you aren't feeling pain during swallowing.....you're way ahead of many who have gone through this.

    p

     

  • Grandmax4
    Grandmax4 Member Posts: 723
    #7
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    why?

    I'm always amazed when people have questions like this, and their Drs haven't answered them...has your Dr mentioned speech therepy, it's not only for speech, but, teaches you how  to swallow a new way. I had my epiglottis removed and recieved appointments and explaination right away...it took me almost 3 months to be able to swallow any food and then it was very difficult...I drank ensure and boost to get calories and started with egg yolks and tomato soup as first foods...for 1 year I ate nothing but soft food...I am now 2 years,10 months out and back to eating anything I want. 

    Don't be hard on your self, I thi nk you're doing good...I didn't have a peg, but, I had a feeding tube down my nose for about 3 months.....your Dr has no idea what you're feeling, he's never gone through the actual scariness of swallowing food again...and 3 weeks is nothing..ask him about speech therepy..you won't regret it

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
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    Grandmax4 said:

    why?

    I'm always amazed when people have questions like this, and their Drs haven't answered them...has your Dr mentioned speech therepy, it's not only for speech, but, teaches you how  to swallow a new way. I had my epiglottis removed and recieved appointments and explaination right away...it took me almost 3 months to be able to swallow any food and then it was very difficult...I drank ensure and boost to get calories and started with egg yolks and tomato soup as first foods...for 1 year I ate nothing but soft food...I am now 2 years,10 months out and back to eating anything I want. 

    Don't be hard on your self, I thi nk you're doing good...I didn't have a peg, but, I had a feeding tube down my nose for about 3 months.....your Dr has no idea what you're feeling, he's never gone through the actual scariness of swallowing food again...and 3 weeks is nothing..ask him about speech therepy..you won't regret it

    well said

    I'm with you on the amazement that treating physicians often don't recognize how tough all of this is.  Speech/swallowing therapy referral should probably be mandatory for us who have been through these treatments.  With my first cancer, I was finally referred to speech therapy after a full year of struggling with a painful tongue when my work required me to talk too much.  That referral was done by my internest, not by the oncologist.  Sheesh.

  • KB56
    KB56 Member Posts: 318 Member
    #9
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    post treatment

    Robyn, it's good to hear from you and I have thought about you often and glad to hear you are through with treatments.    It's only been 3 weeks so it will take time and it sounds like you are doing well since you've already weaned yourself off of the pain meds.

    I had my PEG tube removed at about 3 weeks post treatment but in hindsight it was too soon.   You should keep it as long as YOU think you need it but if you can supplement the PEG tube with some softer foods with lots of protein like scrambled eggs, yogurt, grilled fish, baked potatoes, etc, it will help.   For several weeks after fiinishing treatment I was never hungry and only ate because I knew it was time to do so and forced myself.   Eventually the appetite came back but it was still pretty tough to eat (my throat and tongue were sore for months) and eventually I got back to a place that is now my normal.... Pretty much what I want but nothing spicy.   You can also drink protein shakes, although really cold (like ice cream or a milk shake) was painful, cool stuff like a protein shake mixed with milk was ok.

    Your husband's just trying to help and I think about his comment (don't think about the inbetween but the end point) often.   I know I would get frustrated with my wife as well but all she was trying to do was help.

    sounds like you're right on track with most of us but some are sooner to eat and others later but you're only 3 weeks out so doing great.   I do think at some point you do have to force yourself a little to eat and you build from there.

    Keith

  • ErthWlkr
    ErthWlkr Member Posts: 60
    #10
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    The frustration of recovery...

    Hi Robyn -

    It's a common complaint that most oncologist's don't seem to be clear about the recovery period. While it's true that recovery is as unique as the individual, there are some knowns you can go by...

    Radiation is cumulative - so the side effects of radiation continue to build for about 4 weeks after treatment ends. At that point, you'll begin to feel the side effects (ie fatigue, dry mouth, loss of taste) start to abate. Depending on your physical state, the nature of the cancer, the depth of your treatment, your age, etc, the return to what you would consider normal can take months. Very generally speaking, it will take about 6 months for you to begin to really feel yourself. Even after that, the side effects will continue to abate for months, if not years, afterward. I think I plateaued out on recovery in my third year.

    As for the PEG tube, the doctors won't remove it unless they feel you can get enough calories in by mouth in order to keep your weight stable. There is no schedule to that. I didn't start eating solid food untll about two months (8 weeks) after treatment ended and spent many weeks living only on eggs. That was the only solid food I could get down. It wasn't until about 5 months after treatment ended that I had the PEG removed. Even then, my menu was limited but gradually increasing in scope. At nearly seven years out, I now eat just about anything I'm hungry for. I've even become a chocolate addict!

    Don't get frustrated - all of us here have experienced and rolled thru it. But it takes time - think in months not in days.

    Wishing you a quick and full recovery!

    - Jeff

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
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    Hi Robyn

    Take your time because we are all different and all heal different. It might be 3 week or 3 months just keep giving it a try and little by little it will come back, just don’t try to force it because you don’t want pneumonia. The main thing is that you are healing and in time you will be able to eat again.

     

    Tim Hondo

  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
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    Hondo said:

    Hi Robyn

    Take your time because we are all different and all heal different. It might be 3 week or 3 months just keep giving it a try and little by little it will come back, just don’t try to force it because you don’t want pneumonia. The main thing is that you are healing and in time you will be able to eat again.

     

    Tim Hondo

    Keith brought up something

    I'd forgotten about.  If I had to rely on "being hungry" to ever eat, I would have starved to death.  I started eating on a schedule....like it was TIME to eat, not waiting till I felt hungry.  Nutrition will help you heal faster, and I kept that thought in my mind all the time....eat and heal....eat and heal.....eat and heal.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #13
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    food for thought

    Robyn,

    Congratulations on finishing treatments, be it beat-up a little.

    I too had a PEG, which was removed at 2 weeks post.  I wasn’t even close to being able to eat normally, but my swallowing was more than ready for a 95% liquid (smoothie, protein drink) diet AND I liked it!  I tried all the H&N hints available, but could not overcome my extreme distaste and feel of food.  I remained in said condition for 7 months, always sampling foods, always going to Sunday dinners with my parents always prepared to have a liquid blast.  Then out of the blue I was confronted with eating a turkey sandwich for lunch and it was great.  My 7 month ordeal was over.

    Today, at 2y5m post I can eat anything I want and my taste buds and saliva (while different) are still improving.

    Relax and find your own way (the right way).

    Matt  

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
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    Robyn, as long as you are

    Robyn, as long as you are swallowing, you're doing well.  it was months before i ate after rads.  and then it was a very slow go.  judging by my eating, i don't think you need to be worried.  i think many of us took months to eat.  you will get there, give yourself time.

    God bless you,

    dj

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #15
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    Don't rush Robyn. Your body

    Don't rush Robyn. Your body still has an awful lot of healing to do, and you will still have a massive amount of inflamation on the inside. It was about 10 weeks before I could take my Ensure shakes orally. Keep trying with liquids, but be very careful and very gentle with everything. Keep opening your mouth, as that will try to stay shut and things will stiffen up. You will move along and get better as time goes on... but it does take a long time. Be patient and compassionate to yourself x x x x

  • Robyn64
    Robyn64 Member Posts: 124
    #16
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    thank you

    Thank you everybody for your comments. I actually do have a speech pathologist assigned to me which I see in a few weeks, the same time as Dr who wants to see if it's OK to remove peg. I don't think I'm ready. I'm scared, yes. I have to go and buy a really good smoothie maker, a nutri bullet. I already have a smoothie maker but don't think this will do a good job like the nutri bullet.

    I had no no idea that recovery can take so long, a little upsetting to know but have no choice.

    Thank you everybody.

    Will have to work out what to do next without people pushing me more than I can go.

    Thank you,

    Robyn

  • wmc
    wmc Member Posts: 1,804
    #17
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    You're getting there......

    Every body has it's own pace with recovering. It is a slow process, one step at a time. Remember yesterday doesn't matter, only today. If you can drink then start with liquid first. Cream of chicken soup [if you like it] is great and full of cal. 300 in the hole can. Milkshakes are 500+ for a med. and over 700 for large. Pudding goes down easy as well. Scrambled eggs are good. Remember you are learning all over to swallow so go slow and drink lots of water. Take a small bite and sip some water. Go carful with orange juice and soda or coffee. instead use Water, grape juice, apple juice, and more water. Eating will take time to finish a small meal so don't get frustrated. It takes me on average 40 min to eat 5oz steak and bake potato and I've been swallowing fine for 8 months. Just remember everyday you wake up, it's a new day and yesterday no longer matters, only what you're going to do today. You'll get there.

    Bill

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