Ok, not too bad but I still can't eat

jcortney

Had a pretty good exam today from my ENT. My Onc wanted me to see him after my NED CT.  The problem was he only has office visits one 1/2 days a week, the rest of the time he is doing surgery (mostly Davinci)So it took me almost a month to get in.  Anyway he was really pleased after he scoped me.  He told me that everything is healing well.  

My main complaint right now is that ANYTHING that isn't milky smooth gets stuck in my throat or causes my throat to swell, no way to tell which.  He told me that the BOT and Epiglottis is still very swollen from the radiation and that's what is causing my problems.  It's driving me nuts that I'm always hungry and can't eat anything except Ensure and milkshakes.  That means I have to keep using my PEG even though my body really hates the Nutren.  I actually wake up from dreams and I'm chewing.  Imagine that.

As I was leaving he said he wanted to see me again in three months.  I said jokingly, "well I guess I'm not going to die from this before then".  He said, "you are never going to die from this".  Kinda of made me feel good.

 

Take care and keep the faith you guys that are just starting out.

 

Joe

NJShore

Doing well!

Joe,

Dan is about 4 weeks ahead of you, if I remember correctly. His last ENT visit (2 weeks ago), the doctor his swelling was just starting to go down, and said realistically he could expect at least another month or two before Dan could eat and swallow at even half the pace that he or I could. Dan too is always hungry, always trying to snack, always ready to blow feathers after he eats anything, and he gets nauseated from the water it takes to eat anything. 

He has found soups to be his friend lately. Before he couldnt tolerate the tastes, but now "she crab soup" has been a staple as well as navy bean. He likes the occasional chicken and barley - they all tend to slide well and require a lot less water.

You really are doing great though - it's just going to take more time! Fortunately sounds like you are going to have a lot of it.

Kari

 

Skiffin16

Peaches..

Slippery peaches in Light Syrup...

Preferably Del Monte in the Mason jars...

JG

 

jcortney

NJShore said:

Doing well!

Joe,

Dan is about 4 weeks ahead of you, if I remember correctly. His last ENT visit (2 weeks ago), the doctor his swelling was just starting to go down, and said realistically he could expect at least another month or two before Dan could eat and swallow at even half the pace that he or I could. Dan too is always hungry, always trying to snack, always ready to blow feathers after he eats anything, and he gets nauseated from the water it takes to eat anything. 

He has found soups to be his friend lately. Before he couldnt tolerate the tastes, but now "she crab soup" has been a staple as well as navy bean. He likes the occasional chicken and barley - they all tend to slide well and require a lot less water.

You really are doing great though - it's just going to take more time! Fortunately sounds like you are going to have a lot of it.

Kari

 

Thanks Kari,
It's great that

Thanks Kari,

It's great that David can eat soups.  I'd be happy if I could but I can only have broth.  Anything in it and I have a problem.  I too get nausea from all the liquids.  Let us know when he finally doesn't "blow feathers" (great description by the way) so I can send him a cheer!

 

Best,

J.

jcortney

Skiffin16 said:

Peaches..

Slippery peaches in Light Syrup...

Preferably Del Monte in the Mason jars...

JG

 

Tried it.
No go.

Tried it.

No go.

fishmanpa

Yep Yep yep....

Hi Joe,

It is progress even if it's not the progress you were hoping for. I'm seeing the same issue developing with me. The last few days have revealed swallowing issues and swelling from the rads that will only be compounded with time. My goal is to stay off the PEG (funny how I was all for it initially and now it's a goal NOT to get one). I still dream of a glass of cognac and a Partegas ~

Anywho.... knowing that it will get better in time and that you have the time has to be a glorious feeling. You keep the faith ya hear?! 

"T"

 

jcortney

fishmanpa said:

Yep Yep yep....

Hi Joe,

It is progress even if it's not the progress you were hoping for. I'm seeing the same issue developing with me. The last few days have revealed swallowing issues and swelling from the rads that will only be compounded with time. My goal is to stay off the PEG (funny how I was all for it initially and now it's a goal NOT to get one). I still dream of a glass of cognac and a Partegas ~

Anywho.... knowing that it will get better in time and that you have the time has to be a glorious feeling. You keep the faith ya hear?! 

"T"

 

Speaking of Partegas

I was talking to my med onc on Tuesday and I asked him if I can ever smoke a cigar again (I really like Padron Exclusivo's).  His answer shocked me.  He told me that my disease wasn't caused by the cigars (HPV+) and that I can have as many as he allows himself.  One a month.  Believing that I'd never have one again, that was really good news.

J.

jcortney

fishmanpa said:

Yep Yep yep....

Hi Joe,

It is progress even if it's not the progress you were hoping for. I'm seeing the same issue developing with me. The last few days have revealed swallowing issues and swelling from the rads that will only be compounded with time. My goal is to stay off the PEG (funny how I was all for it initially and now it's a goal NOT to get one). I still dream of a glass of cognac and a Partegas ~

Anywho.... knowing that it will get better in time and that you have the time has to be a glorious feeling. You keep the faith ya hear?! 

"T"

 

Sorry Dupe

Sorry Dupe

CivilMatt

sounds good, but gets stuck in my throat

Joe,

 

Your report was good, congratulations.

 

If your problem is from swelling, it will go down and then food will go down and you can eat real food again and smoke a cigar once a month.

 

While my problem with food differed from yours, I went for 7 months living on smoothies.  I had just about resigned myself to never enjoying food again.  That changed, my condition changed and I am eating normally now.  Your condition will resolve its self and you will be back at the food court.

 

Enjoy your milkshake (which I can not taste),

 

Matt

jcortney

CivilMatt said:

sounds good, but gets stuck in my throat

Joe,

 

Your report was good, congratulations.

 

If your problem is from swelling, it will go down and then food will go down and you can eat real food again and smoke a cigar once a month.

 

While my problem with food differed from yours, I went for 7 months living on smoothies.  I had just about resigned myself to never enjoying food again.  That changed, my condition changed and I am eating normally now.  Your condition will resolve its self and you will be back at the food court.

 

Enjoy your milkshake (which I can not taste),

 

Matt

Thanks Matt

I was/am really lucky that although my taste buds have changed (things just don't taste "right") I never lost them.  Saliva, a whole different story.

J.

Tim6003

jcortney said:

Thanks Matt

I was/am really lucky that although my taste buds have changed (things just don't taste "right") I never lost them.  Saliva, a whole different story.

J.

I'm about like Matt...

I had my peg for 7 months as well....I have most of my taste back now (14 months from last tx) but they do go on vacation now and then.  For example this last couple of weeks my taste buds have been slacking again and things that did taste, now don't taste.??  Go figure.

My throat (per my ENT) is about half the size it was ....and I have to really chew, chew, chew to get things down, but I can eat most anything...with fluids of course.

Hang tough ..you will eat again.  I remember making the mistake of telling my wife 3 months after my last tx that I was always hungry, very hungry and wanted to eat...she balled like a baby bc that hurt her to know I was hungry (did not make that mistake again) She truly was / is a great caregiver.

It will get better ..keep us posted.

Tim

phrannie51

Joe...I'm wondering if

you could take homemade soups and whip them in the blender??  I'm thinking of vegatable soups....you'd get all that nutrition, and still be able to get it down.  Maybe add extra beef/chicken broth to thin it out.  Creamed soups, too....cauliflower, brocolli soups could be blended easily....you might be able to taste them, too....at least for a few bites.  I'm almost 10 months out of rads, and soups are still my best bet....I just don't have to blend them any more. 

p

Ingrid K

Magic Mineral Broth

JOE

on the SuperThread is a recipe for Rebecca Katz' MAGIC MINERAL BROTH.  I know that a lot of folks made up batches of the stuff and lived on it for several months as a supplement to PEG feedings.   I don't know how to do the fancy hyperlink thing, so here is the recipe (cut & paste I can do !!).  You end up with a very nutritious broth that is easy to swallow or put through a PEG.

Ingredients

Makes 6 quarts

6 unpeeled carrots, cut into thirds
2 unpeeled yellow onions, cut into chunks
1 leek, white and green parts, cut into thirds
1 bunch celery, including the heart, cut into thirds
4 unpeeled red potatoes, quartered
2 unpeeled Japanese or regular sweet potatoes, quartered
1 unpeeled garnet yam, quartered
5 unpeeled cloves garlic, halved
1/2 bunch fresh flat-leaf parsley
1 8-inch strip of kombu
12 black peppercorns
4 whole allspice or juniper berries
2 bay leaves
8 quarts cold, filtered water
1 teaspoon sea salt

Preparations

Rinse all of the vegetables well, including the kombu. In a 12-quart or larger stockpot, combine the carrots, onions, leek, celery, potatoes, sweet potatoes, yam, garlic, parsley, kombu, peppercorns, allspice berries, and bay leaves. Fill the pot with the water to 2 inches below the rim, cover, and bring to a boil.

Remove the lid, decrease the heat to low, and simmer, uncovered, for at least 2 hours. As the broth simmers, some of the water will evaporate; add more if the vegetables begin to peek out. Simmer until the full richness of the vegetables can be tasted.

Strain the broth through a large, coarse-mesh sieve (remember to use a heat-resistant container underneath), then add salt to taste.

Let cool to room temperature before refrigerating or freezing.

Prep Time: 10 minutes · Cook Time: 2 to 4 hours · MAKES 6 QUARTS
Storage: Store in an airtight container in the refrigerator for 5 to 7 days or in the freezer for 4 months.

**********************

HOPE THIS HELPS !!

 

 

Roar

fishmanpa said:

Yep Yep yep....

Hi Joe,

It is progress even if it's not the progress you were hoping for. I'm seeing the same issue developing with me. The last few days have revealed swallowing issues and swelling from the rads that will only be compounded with time. My goal is to stay off the PEG (funny how I was all for it initially and now it's a goal NOT to get one). I still dream of a glass of cognac and a Partegas ~

Anywho.... knowing that it will get better in time and that you have the time has to be a glorious feeling. You keep the faith ya hear?! 

"T"

 

Thrush

My throat started hurting early in treatment and it was caused by a yeast infection in my mouth- I think its called thrush- it was my mission also not to have the tube- but I had almost 40 pounds to play with- and that's exactly what I lost- in your picture you look kind of thin to begin with so be careful as treatments go on you will begin to lose weight- clearing up the yeast infection gave me another week or two where I good actually eat. Keep stuffing in the calories wile you can

Laralyn

I know what that's like!

I'm 9 months out of treatments and I still have the same problems you're describing... but they're getting better. It's definitely the epiglottis for me, made worse by the fact that my mouth and throat are so dry. It literally feels like food gets stuck at the back of my throat as I swallow. I find that small bites and a sip of water with and after each bite both help. I also started with really moist, cohesive foods--no rice, no chicken (just now able to start on chicken again!), nothing crumbly, etc. What worked best for me in terms of transitioning to "normal" food were things that were moist and tended to stick together while you swallow or dissolve into a liquid like ice cream, mashed potatoes, meatloaf, or hot dogs without a bun. Make sure you focus on the complete cycle without distraction--don't try to talk AT ALL while you're eating until you've completely swallowed the bite and chased it with a mouthful of water. It sounds easy but going out to eat with friends and family is such an important, social milestone for us after treatment that it's actually tough to remember until you find yourself coughing!

You'll get there, and there will be ups and downs. But before long you'll be eating 75% of the things you used to eat, and that percentage will continue to grow every week. :-)

phrannie51

The Magic Mineral Broth

that Ingrid put up is absolutely WONDERFUL!!  My sister made it for me every two weeks during treatment, and I still keep some in the freezer to toss into my homemade soups....delish!!  During treatment it was manna from heaven goes down the troat like silk....truly like silk!

p

peggylulu

Laralyn said:

I know what that's like!

I'm 9 months out of treatments and I still have the same problems you're describing... but they're getting better. It's definitely the epiglottis for me, made worse by the fact that my mouth and throat are so dry. It literally feels like food gets stuck at the back of my throat as I swallow. I find that small bites and a sip of water with and after each bite both help. I also started with really moist, cohesive foods--no rice, no chicken (just now able to start on chicken again!), nothing crumbly, etc. What worked best for me in terms of transitioning to "normal" food were things that were moist and tended to stick together while you swallow or dissolve into a liquid like ice cream, mashed potatoes, meatloaf, or hot dogs without a bun. Make sure you focus on the complete cycle without distraction--don't try to talk AT ALL while you're eating until you've completely swallowed the bite and chased it with a mouthful of water. It sounds easy but going out to eat with friends and family is such an important, social milestone for us after treatment that it's actually tough to remember until you find yourself coughing!

You'll get there, and there will be ups and downs. But before long you'll be eating 75% of the things you used to eat, and that percentage will continue to grow every week. :-)

MMB

I am 5 months out from Rads and pretty much all I eat is soups and Ice cream with Dr.Pepper. I cannot eat any thing that's dry so nothing sweet and no meat which were my favorite foods . I am so hungry for meat and sweets taste terrible to me now. I am going to try the MMB. Thank you so much for the recipe . What in the world is Kumbo and I've never heard of Garnet Yams . Are they red ?

Thanks again , Peggy

phrannie51

peggylulu said:

MMB

I am 5 months out from Rads and pretty much all I eat is soups and Ice cream with Dr.Pepper. I cannot eat any thing that's dry so nothing sweet and no meat which were my favorite foods . I am so hungry for meat and sweets taste terrible to me now. I am going to try the MMB. Thank you so much for the recipe . What in the world is Kumbo and I've never heard of Garnet Yams . Are they red ?

Thanks again , Peggy

It's seaweed, Peggy...

and you can get it at the health food store.  The garnet yams are the ones that are fat and reddish colored....unlike the long orangie colered ones .

p

peggylulu

phrannie51 said:

It's seaweed, Peggy...

and you can get it at the health food store.  The garnet yams are the ones that are fat and reddish colored....unlike the long orangie colered ones .

p

P

Thank you Phrannie ! We can always depend on you for answers ! Guess my question shows I don't go near health food stores ! Lol

Thanks again for all your help !

Peggy