It's me...AGAIN!! Food for thought? But, really...I need ideas

MMDowns
MMDowns Member Posts: 318
in Head and Neck Cancer #1

So we are ending the 4th week of recovery and all is well.  Terry is starting to look like himself again, his voice is almost back to normal and the gross, thick mucous is all but gone! The best part is some of his taste is already coming back.  Salty foods have a taste, sweet; not so much.  He still has his PEG in and I am wondering if maybe he is becoming a bit too reliant on it? Now, before anyone starts anything let me tell you why I said that.  He has been telling me that he is desperate to eat again and in the past week he has has some foods.  Eggs are big right now, mashed potatoes -NO, potato salad is good and he had about 5 bits of chicken soup.  Which is a huge improvement.  I am very proud and encouraged by that.  However, I have noticed and he has said that he is scared to eat.  Which I believe stems from not eating solids for about 2 months now, the coughing and choking and the occassional vomiting.  His other issue is that he knows what he wants the food to taste like and right now it does not.  I cannot imagine how frustrating that is.  His other concern is that his mouth is so dry that it takes awhile to eat because he really has to chew and drink water (that's another issue).  So we add all those componants together and we have shakes going into the PEG and not the mouth.

  So H&N friends, I need help.  What foods helped you all get through the intro back into solids. Links to recipes or cooking ideas? What words of advice or encouragement can I pass on to him?  I know the dr. is probably going to want to take out the PEG sooner than later and then he will HAVE to eat.  I also know that he will probably have to supplement with protein shakes as well.   My husband is not a quitter and he is not one to shy away from challenges so this is new to us.  Cancer not only wreaks havoc on one's body but also one's psyche.  I need his stubborness to kick in and give the cancer food issues a special salute... 

Have a wonderful Friday and weekend!!

 

 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2
    Eggs and Pancakes

    MMDowns,

    I can relate to the issue of being afraid to eat solid foods for a spell. During my first year I had a few choking episodes and scared the heck out of me. Luckily my wife or son were nearby to help me free the food. I relied pancakes and eggs alot, varies styles, I also used the sugar free syrup to help get the eggs down. Since my taste isn't completely back to normal, it doesn't much matter what I put on them Cool. The Log Cabin brand taste much like the regular maple syrup. Other brands seem watered down. Anything soft works for me, soups, sloppy Joe's, pasta with plenty of meat sauce, not spicy though. I would make myself a shake with some fruit yogurt, throw a whole banana in and some ice cream. Anything to not feel hungry. The main thing is to take his time when eating. 

    I found that if I eat something that is difficult to chew and requires a lot of fluids, I tend to fill up on the fluids before finishing my meal. We have to work a balance between calories and nutrition. 

    I am glad to hear he/you are on the down side of things now and recovery is here, be it at a snails pace at times. 

    My Best to Both of You and Everyone Here

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited May 2017 #3
    life in the fast lane

    MMD,

    You are so cute; all these things get better with time.  Time is the main ingredient to the recovery recipe.

    Swallowing and coughing are something many of us deal with.  I usually have a large glass of water and a large glass of sweet tea when we eat out and I am extremely careful.  I do get into a pickle once in a while when I take a large bite or try to swallow without something to drink.  I eat to MY timeline, not my wife’s.  It takes me longer than she does but I am at the meal and I am putting on the feed bag.  When I eat out with others I adjust my selection to something easy, so that I am not too far behind the crowd.  When I eat a family events, they know I am slow and they like me anyway.

    The PEG, I had mine popped at 2 weeks post and the doctor knew I was drinking smoothies for most of my meals, BUT I was trying food every day. I ate a ton of tomatoes and cucumbers wiith olive oil.  Lots of calories, neutral taste and I was eating.  I was also a fan of fruit, berries and melons and I am a card carrying member of P51’s ice cream of the week club.

    Many doctors will remove the PEG when the weight has stabilized or increased.  Rumor has it that if you put something heavy in your pockets you can pop your PEG sooner.  I think if he can gag down some high calorie smoothies and try as hard as he can to eat, the PEG will be gone.

    No matter how much I want to go back to the old Matt, it is not going to happen.  I am far from the luckiest H&N member, but I am also far from the worst.  I do  better accepting my short comings and so far things are  pretty good.  I enjoy most all of the same foods I used to and I live with the new (pain in the a_ _) habits of coughing, eating slow, etc.

    Matt

  • Joel4
    Joel4 Member Posts: 263 Member
    #4
    Transitioning

    I think I may have mentioned some of this before so forgive me for being redundant.  I was challenged to eat 2 ounces (very little) of food six times a day.  I was instructed to sometimes take big bites and push the muscles and swallowing function.  After several days of doing this I began to eat more and more, and practice really makes perfect.  That's not to say it was easy, but I had to commit to do it no matter how much it sucked.

    Today I enjoyed a plate of refried beans, avocado, with a glass of whole milk.  It tasted exactly like how an elephant smells , but I ate it.  I just polished off a bunch of sushi and the experience was utterly miserable, but I ate it.  Taste is improving overall but we have a long way to go.  the texture of food is bad (lack of saliva) and swallowing can be tough.  With the tube gone, I find that I don't miss it a bit no matter how bad the experience of eating sometimes is.

    During my weigh in, to determine if I could get the tube removed, I may been wearing extra layers, was carrying three cell phones in my pocket in addition to a large Master lock.  Guess I should not have been surprised to learn that I had gained a couple of extra pounds since my previous weigh in!

     

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #5
    Matt

    Matt, You crack me up. I did that exact same thing to get my tube out. I started my weight ins with jeans and a tee shirt and ended with a winter coat and quarter rolls, cell phone, keys and big boots on! But I got that dang tube out within a 2 week time frame. Us nurses are a little thick between the ears.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    edited May 2017 #6
    I've also decided I'm going

    I've also decided I'm going follow the plan I found in Iran for a four week regimen of Bioxtra at least two times a day, but especially at night during sleep.  Slather up and settle in.  They seem to think it makes a difference on the long term presence of dry mouth.  There is also a spray form of the gel I am going to go with.  

    So far theirs is the only coherent science based plan for proceeding that I have seen.  I suspect somewhere someone in American medicine is doing something as well for a treatment plan, but I haven't found it yet.  For as many people that go down this path, it seems like there should be cleared guides.  But I keep running in to hand scribbled notes from practitioners like PTs to deal with Lymphodemia and neck cramps from healing tissue.  My infusion nurses were the best source of info, and that was months ago.  This web site seems to be the state-of-the-art, and I know I don't know what I'm doing.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #7
    The mental part is a huge

    The mental part is a huge challenge to getting to "normal" food.  I have gone thru a series of plateaus, each about a month long, starting in about month 3.  The first week it is hard to do the new food type, then gets progressively easier.  This week, with my Thrush gone I have pushed hard, and finally feel like I'm [mostly] fully functional again.  Still, there are times when I find food intimidating, and my food consumption is driven by consciousness of the need, not by appitite. 

    I've also learned it is easy to slide backwards.  I was at the end of one plateau cycle, didn't much feel hungry, let my intake drop.  That went on for 5-6 days.  I paid for it with weight loss and a week of generally feeling crappy, and there after started counting calories and drinking nutrition shakes again.  Took about two weeks to climb out of the hole.  I now believe that this really will take the year my oncols told me it would.   Disappointing but not undo-able, I know the disciplines by now.  I have always been a strong, active sort of guy, started out figuring I'd blow thru this.  That was in November, a lifetime ago.

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