10 more rads to go & 2 questions

Hi Everyone,

I am catching up on the boards here and also checking in. My husband is on the countdown... 10 radiation and 1 more cisplatin to go. He has pretty much lost his voice, and is full time tube feeding. I guess it's been about 10 days since he was able to eat something without gagging. So the doc told him to just keep up with drinking water and focus on nutrition through the tube. He's also putting the Lortab pain med into the tube.

He's doing his best to keep working and stay busy. His sister is traveling here to stay and help us with the children- I can't wait! This is an exhausting ride. 

First question- what kind of soft non-acidic foods was/is anyone able to swallow just to keep swallowing? Or is it ok to just drink water for preserving the swallowing function? 

Second question- how soon after treatment might he be able to get back to swallowing food? I know everyone's different, so maybe I'm looking for a range of experience here. 

Best wishes to all at whatever stage you are in right now...

Peace, Elizabeth

 

 

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    Glad for help

    I am glad that your sister-in-law is coming to help.  Your husband will probably not be up for much visiting.  I didn't have a feeding tube but Skiffin swears by peaches in the glass jar.  I ate cream of wheat, pudding, custard, eggs, won ton soup and I drank a lot of smoothies.  All you can do is try.  Something works one day or one bite and doesn't taste good the next.

  • thennies61
    thennies61 Member Posts: 285
    I also ate soups (not hot)

    I also ate soups (not hot) power shakes with ice cream,milk,bannanas.ensure powder.cream of wheat,scrabbled eggs,oat meal.But it was a process I learned how to eat again but glad I had the peg tube for water and whatever else I could down it.I also went to gnc and got a liquid vitiaum.But it was to long before the effect of the radition started to leave so I could eat.But still zaps your engery

  • wmc
    wmc Member Posts: 1,804
    I went with soup

    As far as just swallowing water will keep the memory of how to. I did Cream of Chicken soup. I was on liquid only so chicken noodle was out and the Cream of chicken was smooth and twice the calories, iI need weight. Milkshakes med is 700 cal and lots of jello [non refrigerated - Hunts] and puding. I think it is a trial to see what will tast good, or at least OK.

    Bill

  • hwt
    hwt Member Posts: 2,328 Member

    I also ate soups (not hot)

    I also ate soups (not hot) power shakes with ice cream,milk,bannanas.ensure powder.cream of wheat,scrabbled eggs,oat meal.But it was a process I learned how to eat again but glad I had the peg tube for water and whatever else I could down it.I also went to gnc and got a liquid vitiaum.But it was to long before the effect of the radition started to leave so I could eat.But still zaps your engery

    Elizabeth

    I had smoothies and milk shakes then graduated to eggs,  Bob Evans mashed potatoes, crab legs in melted butter. Milk made everything go down better

  • lornal
    lornal Member Posts: 428
    Peaches and Chocolate Milk (WHole)

    Totally agree witht he Peaches in a glass jar.  In addition - get plastic spoons and forks - stay away from the metal.

    I also drank whole chocolate milk.  I was able to taste that the longest.

    Best Wishes

    Lorna

  • Sailor123
    Sailor123 Member Posts: 97
    Hi Elizabeth:
    I stopped

    Hi Elizabeth:

    I stopped eating entirely when I got to the stage your husband is at.  I know it is important to keep swallowing but I didn't swallow anything, including my own spit for about a month.  Eventually I started swallowing water and gradually worked my way back to food. (Mostly soup)  I would say it was a good month after radiation before I ate any food.  It is important to get good nurtrition through the tube, so put all the good nutrients you can in there.

    Hard times. Good luck.  Glad your having family come in.

    Peace.

    Shirley

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Elizabeth, i ate a lot of

    Elizabeth, i ate a lot of mashed potatoes.  they are sold in individual packages you can buy that you just add water too.  funny, when i was eating them my taste was off so i thought they were good.  tried them once i had taste back and did not like them at all.  i will probably be a month or longer before he is able to eat and probably even longer than that before he wants to eat.  wishing you both the best.

    God bless you,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    post stage

    Elizabeth,

    Drinking lots of water and swallowing swallowing, swallowing was easily the best advice I received from the H&N forum.

    I was trying soft foods from the time the mask came off, but I drank a lot of smoothies for 7 months.

    Eat, drink and be careful.

    Matt

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Elizabeth

    Anything soft and watery like oat meal or soup, he will let you know when it is time to start trying other things. After he is finish it will take some time before he starts to heal because the radiation is still working sometimes months after treatment stops. But don’t let that get him down, keep working with him in trying different things. I was a vegetarian when I did my first treatment, so when I finished treatment a few months later my family was eating some Popeye chicken; well I reach in the box and pulled out a little piece of crum and put it in my mouth, and that hit my brain with taste. From then on I could not pass up a fried chicken place, so give him time, he will heal and start eating soon. I am glad to hear he is still working that is what has helps me the most in getting back to my new normal; it helps to keep him force.   

     

    Hondo

  • Loves2read
    Loves2read Member Posts: 33
    Sailor123 said:

    Hi Elizabeth:
    I stopped

    Hi Elizabeth:

    I stopped eating entirely when I got to the stage your husband is at.  I know it is important to keep swallowing but I didn't swallow anything, including my own spit for about a month.  Eventually I started swallowing water and gradually worked my way back to food. (Mostly soup)  I would say it was a good month after radiation before I ate any food.  It is important to get good nurtrition through the tube, so put all the good nutrients you can in there.

    Hard times. Good luck.  Glad your having family come in.

    Peace.

    Shirley

    Sounds similar

    He just got to the point where any food, even beloved scrambled eggs, made him nauseated/vomit. So for now he's entirely tube feeding with the ISO-cal formula. My guy is meat/potatoes and won't let me give him a smoothie to put down the tube. He's doing ok with the 6 cans/day, but it took a few days to get to that point. Those few days of not eating and not getting all he calories from formula either were stressful to watch. But I think he's on the right track now. Thanks for weighing in with how it was for you!

  • Loves2read
    Loves2read Member Posts: 33
    Hondo said:

    Hi Elizabeth

    Anything soft and watery like oat meal or soup, he will let you know when it is time to start trying other things. After he is finish it will take some time before he starts to heal because the radiation is still working sometimes months after treatment stops. But don’t let that get him down, keep working with him in trying different things. I was a vegetarian when I did my first treatment, so when I finished treatment a few months later my family was eating some Popeye chicken; well I reach in the box and pulled out a little piece of crum and put it in my mouth, and that hit my brain with taste. From then on I could not pass up a fried chicken place, so give him time, he will heal and start eating soon. I am glad to hear he is still working that is what has helps me the most in getting back to my new normal; it helps to keep him force.   

     

    Hondo

    Thanks everyone

    He's still able to drink water, but I can see that even with pain meds, he's in a lot of pain. Praying that the next few weeks pass quickly without any other setbacks. Thanks so much for responding with your stories- helps to know what to expect!