3 months out

the_wife
the_wife Member Posts: 184
edited December 2015 in Head and Neck Cancer #1

Hello,

My husband is 3 months out from chemoradiation for tonsil cancer. We are weaning him off the tube and it's been almost one week since we haven't used it at all. I started out making hot cereal, eggs, and soups, etc, but now we're mostly relying on shakes because they're so easy to do and to add the calories. The thing is, I'm worried about how much sugar and dairy products he's getting and what it's doing to his cholesterol. I use Carnation Instant Breakfast as a base for the shakes and have added fruit and lots of variations, but I know he needs to have more nutrition. How does everyone else do it? Once he goes back to work I think he'll have to rely mostly on Ensure during the day. 

The main problem is that he still has no appetite. None whatsoever.

Overall, I'm amazed at how far we've come! At first it seemed like the impossible dream to get off the tube, but it looks like we're actually going to do this!

 

Comments

  • swopoe
    swopoe Member Posts: 492
    I am really happy for you!

    Glad you can see a light at the end of the tunnel. Our nutritionist told us not to worry about cholesterol, but maybe that is different for everyone. She also recommended a shake called enu, that you can get online and at some stores. No HFCS and better for you than most shakes like boost, carnation etc. I have an online coupon code I can share if you want.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    pop your PEG soon

    the_wife,

    3 months, good job and about time for 1st post scan.

    I did not eat (completely) new normal for 7 months, but I tried EVERYTHING and drank a lot of protein drinks and smoothies made with milk, protein powder (flavored),( bananas, blueberries or strawberries), nuts and a big glug of vegetable oil and I was very happy.   I had such an aversion to taste and texture of most foods that retuning to eating became a challenge.

    Today, new normal tastes and feels great.  I wish you a similar outcome.

    Matt

  • MrsBD
    MrsBD Member Posts: 615 Member
    Eating

    It looks like your husband is doing really well. In another month or two, he'll be eating a much greater variety of foods. At three months out, I was still being told not to worry about cholesterol, but just to eat plenty of protein to help with the healing process. My cholesterol ticked up only a couple of points during that time. You can use fat free milk and add protein powder or yogurt to shakes. Use a thermos or see if there is a fridge your husband could use at work. A variety of flavors might stimulate your husband's appetite, but don't worry if it takes a while. It's been 14 months and I still don't ever feel famished. Hang in there. Every day you are getting closer to normal! 

     

  • the_wife
    the_wife Member Posts: 184
    MrsBD said:

    Eating

    It looks like your husband is doing really well. In another month or two, he'll be eating a much greater variety of foods. At three months out, I was still being told not to worry about cholesterol, but just to eat plenty of protein to help with the healing process. My cholesterol ticked up only a couple of points during that time. You can use fat free milk and add protein powder or yogurt to shakes. Use a thermos or see if there is a fridge your husband could use at work. A variety of flavors might stimulate your husband's appetite, but don't worry if it takes a while. It's been 14 months and I still don't ever feel famished. Hang in there. Every day you are getting closer to normal! 

     

    Thanks everyone. It's

    Thanks everyone. It's only been a week, but feels like months since we've been doing the shakes. I'm going to try adding more regular food now that his taste buds are coming back somewhat. It's really hard as a caregiver to see him go through this. Yes, Matt, the food aversion thing was / is really a big problem. The things they don't tell you....Swopee, thanks for the tip. I'll consider trying the Enu once we run out of our Ensure. Next big thing will be the scan, then getting back to work.

    Does anyone recommend trying to eat meat, or is that completely out at this point?

  • Barbaraek
    Barbaraek Member Posts: 626
    It's great to hear

    that you are doing so well! We are still trying to wean off the tube, but no go until the weight goes up some more and stays up. Part of it is psychological too - I think it is too easy just you pour in the isocal and get back to work, rather than try to eat - even if it is just liquids and shakes. We will get there - I'm sure...just slowly.

    I went on Amazon and did a search and came up with some cookbooks that are specifically for those with swallowing difficulties or those who have undergone treatment for head and neck cancer. Maybe you are ready to do the same? A good one to start with is the Eat Well - Stay Nourished 2 volume cookbook from SPONCH (Support for people with Oral, Head & Neck Cancer).

    I know not much will seem appetizing to your husband now, but hopefully things will continue to improve, so Bon Apetit!

    Barbara

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    food

    the_wife,

    Yes, trying meat is fine.  I found that trying everything and often, worked best for me.

    Please understand, for me, the taste and texture of most foods repulsed me tremendously and I loved to eat pre-cancer treatment.

    I wish you the best in your culinary endeavors, but found time to be my determining factor.

    Be happy,

    Matt

  • the_wife
    the_wife Member Posts: 184
    CivilMatt said:

    food

    the_wife,

    Yes, trying meat is fine.  I found that trying everything and often, worked best for me.

    Please understand, for me, the taste and texture of most foods repulsed me tremendously and I loved to eat pre-cancer treatment.

    I wish you the best in your culinary endeavors, but found time to be my determining factor.

    Be happy,

    Matt

    Barbara, yes, it's def easier

    Barbara, yes, it's def easier to do the tube thing. But we'll see how it goes in the next few weeks. The smoothies save him from having to eat real food. If given the choice, that's what he'd rather eat. I always let him choose. For now it's working, but I keep wondering....what happens after the tube is removed and if he starts losing weight because he has no incentive anymore, what happens then? I know I'm getting ahead of myself. 

    Matt, thanks for sharing your experience. I think it's the same for my husband. It was obvious how much food repulsed him especially at first. But even though I could see how difficult it was, it was still so hard to understand. Who knew how important the sense of taste is? I guess it's kind of like losing other senses like sight or touch or sound. Like going blind and someone saying...hey, don't worry, it'll come back eventually. Well, maybe not a fair comparision, but still...

    In the meantime with all this trial and error, I'm becoming a better cook. 

    Oh the irony...!

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Feed me

    At this point the main thing is to get it in him and get some weight back on, as soon as he is able and starts to taste again he will be eating you out of house and home. But don’t be surprised if what he use to like he don’t like anymore and what he did not like before he now loves. Sugar and stuff can be cut anytime once taste is back.

     

    Tim

  • the_wife
    the_wife Member Posts: 184
    Hondo said:

    Feed me

    At this point the main thing is to get it in him and get some weight back on, as soon as he is able and starts to taste again he will be eating you out of house and home. But don’t be surprised if what he use to like he don’t like anymore and what he did not like before he now loves. Sugar and stuff can be cut anytime once taste is back.

     

    Tim

    Got it

    Ok, Tim, got it....thanks to everyone for your wise words of advice. I know it should be obvious, but for us onlookers and caregivers (and some providers), not so much. At every point in this journey, I find myself saying, this is the hardest part and then there's something else that comes along that's hard. But, I THINK I can say with some confidence that it's getting easier. Small victories are sweet. 

    You know what they say...whatever doesn't kill you makes you stronger! I say: Ok, whatever, I'm strong enough now! 

  • mmt366
    mmt366 Member Posts: 41
    the_wife said:

    Got it

    Ok, Tim, got it....thanks to everyone for your wise words of advice. I know it should be obvious, but for us onlookers and caregivers (and some providers), not so much. At every point in this journey, I find myself saying, this is the hardest part and then there's something else that comes along that's hard. But, I THINK I can say with some confidence that it's getting easier. Small victories are sweet. 

    You know what they say...whatever doesn't kill you makes you stronger! I say: Ok, whatever, I'm strong enough now! 

    Low cholesterol

    the wife,

    i had a similar Dx and treatment regiment with 'high' cholesterol prior to treatment so I was a bit concerned while I was drinking all those dairy based shakes and high calorie cheese soups for 4 months. so after my first 3mth checkup in July I was expecting my numbers to be off the chart, but surprisingly they weren', just a few clicks higher than pre- surgery and treatment. But the best news was I was NED. Well i just had another blood workup and my cholesterol was the lowest it's been in 15 years...go figure Because I'm still eating and drinking more than my fair share of the same stuff( especially ice cream)

    My surgery was January 14, 2015 and I completed radiation and chemo in May. I am still considered anemic but all in all I think I'm doing pretty well, which I fully expect my upcoming 3 month CT scan will indicate next week. 

    I'm not a real doctor I just play one on TV but my advice is to concentrate on calorie and protein intake at this point, then deal with the cholesterol issue after you have your strength back.

    Happy and HEALTY 2016 to you and all our friends battling Cancer and other illness.

    mmt366

  • kdot2003
    kdot2003 Member Posts: 143
    Hi,
    Three weeks out.  Food IS

    Hi,

    Three weeks out.  Food IS repulsive!  I quit eating entirely since week 3 in tx and quit water the last week tx and the first week after.  All that vomiting and mucous.  Anyway trying to eat now.  Taste, consistency...horrible.  I can drink water now.  Food is so hard.  Trying all the things recommended on here.  Havent even tried a shake.  Maybe I can stomach one.

    Karen

  • the_wife
    the_wife Member Posts: 184
    kdot2003 said:

    Hi,
    Three weeks out.  Food IS

    Hi,

    Three weeks out.  Food IS repulsive!  I quit eating entirely since week 3 in tx and quit water the last week tx and the first week after.  All that vomiting and mucous.  Anyway trying to eat now.  Taste, consistency...horrible.  I can drink water now.  Food is so hard.  Trying all the things recommended on here.  Havent even tried a shake.  Maybe I can stomach one.

    Karen

    Eating

    Karen,

    Do you have a dietician on your team? They gave us some materials and ideas for food to try. I'm assuming you have a PEG tube since you haven't eaten this whole time. My husband quit eating almost right from the start of his treatment. he was just so sick. He lived on Ensure and Scandishakes or poached eggs until his tube was put in halfway through treatment. 

    3 weeks out is early. We were still just trying to keep the pain and nausea at bay. Even at one month after treatment he couldn't eat anything due to mucus, gagging, and pain. He started back with poached eggs again, but still preferred not to eat at all. It was and still is mechanical motion. We started very very gradually adding things like hot cereal for breakfast. Soup or broth was about all he could handle at first... sometimes he only ate spoonfuls at a time. We started more soft food at about 2 months out. Then he became more motivated to get the tube out. The regime was (and still is) hot cereal for breakfast, shakes during the day, and "regular" food for dinner. He still finds food tasteless and 'hard to eat.'

    You have to wait until your mouth heals more, I think, if you're only 3 weeks out. At 3 months out he was eating quiche, sausage, pot pies, hash, even a burger. He seemed to want favorite childhood foods that were comforting more than anything else. I made shakes a million different ways and still do just so he can maintain his calories. And you all are right - don't worry about the cholesterol!

    Unfortunately, taste is still an issue although it is getting a little better. He is still depressed about that and understandably so. I have to remind him every day that he WILL get better. You will, too, so hang in there!