Week 5 Post Tx....Food not appealing, but must swallow.

cureitall66

We are at 5 weeks post and have the liquid swallowing down pretty darn good, but food is a bit of a struggle. He says nothing seems appealing. Kind of has a funny taste in his mouth. Has tried some strawberry jello and can taste the strawberry and not too bad tasting. Drinking his Ensure/Boost by mouth now and the chocolate and strawberry seem to upset his stomach and the vanilla is ok...just no taste. Thought we'd try some scrambled eggs and he is resisting. My feeling is that nothing will taste good as it once did for some time and in the meantime, we just need to go after the food swallowing regardless...am I being to harsh? I don't know what that's like to have that feeling and possible upset stomach over it. Any ideas for food regarding texture, or possibly a little more appealing because of that "funny taste"? His stomach is still pretty weak...so maybe it's all trial and error?

 

Thanks,

 

Cris 

longtermsurvivor

eating to survive

By about week four I was on plain ensure, adding whatever I could to boost calories.  At some juncture it is likely a waste of time to spend too much time at trial and error.  He needs calories and fluids.  He also needs to maintain swallowing.  Beyond that, its all good. 

 

Pat

phrannie51

As far as food not tasting right....

he seems right on schedule to me ...nothing tastes right or as good as it used to for a long long time....(I'm sitting here eating a bowl of homemade bean soup, which I was craving so much that I cooked up a pot just for me....I'm sorely disappointed....the taste only lasts for 2 bites, and then doesn't "taste right")....He is on the right track tho, with the swallowing!  If he does ok on vanilla Ensure, then so be it....he's swallowing and getting nutrician, and basically preparing to eat normally in the near future.  What might taste better, or go down easier is so varied with each person.....Soft stuff seems to be the only consistant thing we wanted...Mac and cheese to cheesecake....to soups.  My sister made me several pots of brocolli and cheese soup while I was in treatment and after....I could taste brocolli, and the texture was wonderful....One rule of thumb that worked pretty much all thru treatment (and even now) is....the blander the food, the more I can taste it.....I know it doesn't make sense, but it does.  Like I could taste milk long after everything else became tasteless.  Also, things like Mac and cheese, or mashed potatoes (dishes that are soft, but sticky), I put a lot of milk into to make it soupy....

p  

CivilMatt

actual eating food is over rated

Cris,

 

As I have mentioned, for me the awful feel and texture of food was just as serious a deterrent to eating as taste no taste.  I was always trying foods, all kinds of food, but I relied on my smoothies for 99% of my nourishment.  I wasn’t mad or sad about it, that is just the way it was.

 

Lucky for me the smoothies tasted fine and I was happy with that.  Then one day about 219 days post the magic of the H&N forum came true (time) and the feel issue fell away the refrigerator opened up, the stove turned on and the microwave flashed start and I was back in the eating game.

 

Until the stars were aligned there was nothing short of a taste bud transplant to help me.  I just could not stand most foods, period, but you have to keep trying foods, all the time.

 

Now excuse me I have some Kung Pow Chicken to warm-up.

 

Matt

Billie67

CivilMatt said:

actual eating food is over rated

Cris,

 

As I have mentioned, for me the awful feel and texture of food was just as serious a deterrent to eating as taste no taste.  I was always trying foods, all kinds of food, but I relied on my smoothies for 99% of my nourishment.  I wasn’t mad or sad about it, that is just the way it was.

 

Lucky for me the smoothies tasted fine and I was happy with that.  Then one day about 219 days post the magic of the H&N forum came true (time) and the feel issue fell away the refrigerator opened up, the stove turned on and the microwave flashed start and I was back in the eating game.

 

Until the stars were aligned there was nothing short of a taste bud transplant to help me.  I just could not stand most foods, period, but you have to keep trying foods, all the time.

 

Now excuse me I have some Kung Pow Chicken to warm-up.

 

Matt

Cris
I can so relate to what he is feeling and going thru. I tried every soft thing under the sun, yogurt, sherbet, pudding, jello. A couple of things that were ok with me were mashed potatoes mixed with lots of butter and corn. I know that sounds weird but I could actually taste it and it went down without causing too much pain. I also liked cream of wheat. Of course they had to be on the thin side but those things seemed to work for me.
Good luck with this and try and be patient, this is a long healing process and it can't be rushed. My dr actually told me to think of recovery in terms of weekly progress and not daily progress.
Take care,
Billie

ToBeGolden

In the neck

My tumor was totally in the neck, so my mouth and taste buds were spared. Nevertheless, I found pancakes to be (and still are) one of my favorite foods. Pancakes "melt" in the mouth. At least one other patient found pancakes to be a "good" food. Eveyone is different, and there is no guarentee that they will be good for your husband. Just a thought.

I would use lots of butter/margerine and little suruip. Rick.

blackswampboy

what are the docs saying?

if his doctors are insisting that he has to swallow solid food, then you're not being too harsh.

otherwise, please be patient with him. 5 weeks post isn't a long time, and swallowing liquids is a victory in itself. I've only started eating solid foods recently, and it's still difficult for me. I'm six months out--tonight my entire family went out to eat bulgarian food, and I stayed home. I've done it, but not tonight. it's still a waste of money for me to order a full serving of restaurant food, and sometimes I'd just rather not sit in public and have stuff come out my nose. or smell good stuff I can't eat.

but tomorrow will be better, for your husband and hopefully all of us.

luvofmylif

blackswampboy said:

what are the docs saying?

if his doctors are insisting that he has to swallow solid food, then you're not being too harsh.

otherwise, please be patient with him. 5 weeks post isn't a long time, and swallowing liquids is a victory in itself. I've only started eating solid foods recently, and it's still difficult for me. I'm six months out--tonight my entire family went out to eat bulgarian food, and I stayed home. I've done it, but not tonight. it's still a waste of money for me to order a full serving of restaurant food, and sometimes I'd just rather not sit in public and have stuff come out my nose. or smell good stuff I can't eat.

but tomorrow will be better, for your husband and hopefully all of us.

It's so frustrating what you

It's so frustrating what you are going through. I tried so many different foods for my husband ...some worked some didn't, but the one food he was usually able to get down each morning was scrambled eggs. I mixed them with whipping cream to add extra calories and made them very light and fluffy and moist. I also melted a slice of american cheese in them to add calories so I used 2 eggs the total calories was near 500. It always made me so happy to see him get them down. I also made alot of meatloaf. That would slide down pretty easily with runny  mashed potatoes.

Things will get better ... keep us updated and I send you positive wishes and prayers over the internet

Joan

Laralyn

I remember that period of time!

Does he have trouble swallowing, or is it just about the taste? I had trouble swallowing from swelling after radiation. My oncologist sent me to a speech pathologist, who was really helpful. If swallowing is difficult, I'd recommend that for sure.

For the taste, I think everyone is different. Ask him what parts of the food he tastes, and that can help narrow it down. Before treatments, I loved scrambled eggs. After treatments, it was almost 5 months before I could stand the taste again. It's really odd what you can taste and not taste as you start to heal. I divided food into two categories:

Acidic, dry or spicy: NO WAY. These items are still mostly a no-go situation for me, and I'm 6 months past treatments. Even black pepper counts as spicy for me now. Dry wines and vinagerette salad dressings can burn. Even things you normally think of as "sweet" are acidic after treatments... like pineapple. Once something goes on the "keep away" list, I'll usually wait 3-4 weeks before I'll try it again.

Everything else: Try it, see what part you can taste, and use that to narrow down what you want to eat. Keep doing this every week or two because your taste buds wake up over time. For example, chocolate tasted like nothing, then it tasted like salt, and now I can taste it for about 4-5 bites. I realized my salty and bitter taste buds came back first, so yogurt was out (the tartness was off the charts) but beef--especially ground beef with onions or gravy--tasted almost normal, pretty close to the start. Variety in a meal also helps because it seems to keep the taste buds working longer. For me at least, I can taste more if I have roast, potatoes and green beans as separate items than if they are all together in a stew because in a stew they all taste the same and the taste fades, but separately I can go between the three different tastes and textures so it seems to last longer. So while he's on soft foods, he could try meatloaf with mashed potatoes and creamed corn, for example--it lets the taste buds go between salty, creamy and sweet.

It really does change on a weekly basis, so don't give up or let your husband get depressed. It sometimes feels super slow but your taste and swallowing do improve over time. Keep experimenting and don't get bummed if something has no taste today... just try it again next week. :-)

NJShore

phrannie51 said:

As far as food not tasting right....

he seems right on schedule to me ...nothing tastes right or as good as it used to for a long long time....(I'm sitting here eating a bowl of homemade bean soup, which I was craving so much that I cooked up a pot just for me....I'm sorely disappointed....the taste only lasts for 2 bites, and then doesn't "taste right")....He is on the right track tho, with the swallowing!  If he does ok on vanilla Ensure, then so be it....he's swallowing and getting nutrician, and basically preparing to eat normally in the near future.  What might taste better, or go down easier is so varied with each person.....Soft stuff seems to be the only consistant thing we wanted...Mac and cheese to cheesecake....to soups.  My sister made me several pots of brocolli and cheese soup while I was in treatment and after....I could taste brocolli, and the texture was wonderful....One rule of thumb that worked pretty much all thru treatment (and even now) is....the blander the food, the more I can taste it.....I know it doesn't make sense, but it does.  Like I could taste milk long after everything else became tasteless.  Also, things like Mac and cheese, or mashed potatoes (dishes that are soft, but sticky), I put a lot of milk into to make it soupy....

p  

Lighter flavors..

Phrannie,

although my husband is still in treatment, he would agree with you, the softer flavored foods seem to be retaining their taste. Heavy flavors are all tasting like wet cardboard. I just wish there were more foods that he liked and still tasted good.

 

Kari

 

hwt

Laralyn said:

I remember that period of time!

Does he have trouble swallowing, or is it just about the taste? I had trouble swallowing from swelling after radiation. My oncologist sent me to a speech pathologist, who was really helpful. If swallowing is difficult, I'd recommend that for sure.

For the taste, I think everyone is different. Ask him what parts of the food he tastes, and that can help narrow it down. Before treatments, I loved scrambled eggs. After treatments, it was almost 5 months before I could stand the taste again. It's really odd what you can taste and not taste as you start to heal. I divided food into two categories:

Acidic, dry or spicy: NO WAY. These items are still mostly a no-go situation for me, and I'm 6 months past treatments. Even black pepper counts as spicy for me now. Dry wines and vinagerette salad dressings can burn. Even things you normally think of as "sweet" are acidic after treatments... like pineapple. Once something goes on the "keep away" list, I'll usually wait 3-4 weeks before I'll try it again.

Everything else: Try it, see what part you can taste, and use that to narrow down what you want to eat. Keep doing this every week or two because your taste buds wake up over time. For example, chocolate tasted like nothing, then it tasted like salt, and now I can taste it for about 4-5 bites. I realized my salty and bitter taste buds came back first, so yogurt was out (the tartness was off the charts) but beef--especially ground beef with onions or gravy--tasted almost normal, pretty close to the start. Variety in a meal also helps because it seems to keep the taste buds working longer. For me at least, I can taste more if I have roast, potatoes and green beans as separate items than if they are all together in a stew because in a stew they all taste the same and the taste fades, but separately I can go between the three different tastes and textures so it seems to last longer. So while he's on soft foods, he could try meatloaf with mashed potatoes and creamed corn, for example--it lets the taste buds go between salty, creamy and sweet.

It really does change on a weekly basis, so don't give up or let your husband get depressed. It sometimes feels super slow but your taste and swallowing do improve over time. Keep experimenting and don't get bummed if something has no taste today... just try it again next week. :-)

I'm with Rick

Pancakes have worked well for several of us. They are still one of the foods I ate early on that is still a "go to" food for my calories. As for hamburger, I've found the fatty cut, less than 80 % works well. If I order out at a nicer resturant it is too dry. No ground chuck or sirlion. Try making a meatloaf with a low grade burger, an egg and plenty of onion, no breading or crackers. I always looked forward to crab leg night at the local casino bufffet, it went down easy. I too, mix corn with my mashed potatoes. Milk makes everything go down easier. Good luck

cureitall66

You ALL offer wonderful tips and advice....

Thank you all....the advice you all give is priceless. For one, you don't feel alone in this process when you get everyone's opinion with what worked and didn't. The swallowing has gotten even better over the weekend. He's gotten oatmeal down with no problems. The taste was bland. I believe the combination of swallowing and the taste are a problem together. He still has the fear of chocking( due to swelling) along with trying to eat without throwing up because of the taste.

We'll get there....one day at a time. Thanks for all the ideas and tips!

Ingrid K

cureitall66 said:

You ALL offer wonderful tips and advice....

Thank you all....the advice you all give is priceless. For one, you don't feel alone in this process when you get everyone's opinion with what worked and didn't. The swallowing has gotten even better over the weekend. He's gotten oatmeal down with no problems. The taste was bland. I believe the combination of swallowing and the taste are a problem together. He still has the fear of chocking( due to swelling) along with trying to eat without throwing up because of the taste.

We'll get there....one day at a time. Thanks for all the ideas and tips!

Keep on chuggin on

keep trying different things.....and retrying them.  What doesn't work one day may work really well a few days later.  Bizarre, but true.  I am sure that pancakes and lots of syrup is what kept me from losing my mind.  It was the only thing that tasted like real food for about 2 months, although I kept trying to sneak in new items.  We would just buy the frozen pancakes and I could easily microwave one or two at a time....went thru several bottles of syrup though.

Keep up the good work.  MUST MUST MUST keep using the swallowing muscles or they will "freeze up".