Things are getting harder

swopoe

as we knew they would, but still it doesn't make it any easier. My husband is half way through his 6 chemo treatments (cisplatin) and almost half way through his 30 radiation treatments for his tongue cancer. Starting on Christmas Eve is when the eating became hard. Up until that point he was doing fine, and then poof, food started tasting like nothing. He said he can't explain it, but food, mostly things that are sweet, taste like nothing at all. So he started using his peg tube. He didn't want to use it, but we had the isosurce 1.5 formula delivered, and he is doing about three cans a day along with mouth feeding of stuff like whole milk yogurt, canned peaches, coffee ice cream, chicken and stars soup, eggs, avocados, water, seltzer water, cucumbers, cantaloupe, and broccoli. Those are the things he still likes so far. 

He is also using magic mouthwash and this neutral sal stuff which he says helps. 

It just hurts to see him sad about all of this. He tells me he will make it over the finish line, even if he has to crawl over it.

Any other recs for food we can try or things to do? He wants me to stop telling him I am sorry, but I can't help it. I just feel lost.

Barbaraek

If he has mouth sores

try L-glutamine powder mixed with water. You can swish and spit it or swallow it. Also a Rx called GelClair may help.

Unfortunately, taste will be shot for quite a while. Eating is a job to get through, not a pleasurable experience. Use the PEG and Isosource to keep his weight up. Try to stay hydrated. It will get better eventually but you're headed into the darkest part of the tunnel right now. Prayers for you and your husband.

Barbara

kdot2003

Good Job

I am impressed.  I stopped eating about two weeks in!  I'm impressed with his fortitude.  I just could not eat anything that tasted like metal or cardboard, then the consistency made me sick.  I think he should commend himself!  Now i'm 1.5 weeks after tx and wondering how I am going to start eating again.  

Barbaraek

kdot2003 said:

Good Job

I am impressed.  I stopped eating about two weeks in!  I'm impressed with his fortitude.  I just could not eat anything that tasted like metal or cardboard, then the consistency made me sick.  I think he should commend himself!  Now i'm 1.5 weeks after tx and wondering how I am going to start eating again.  

Karen...

you will eat again, but you don't have to feel pressured to rush it. My husband's throat was so sore it seemed like forever before he wanted to take anything by mouth. Just start with some water and L-glutamine, or a non-acidic juice. My husband also found milk soothing, though I know some people don't recommend that because it can increase mucus - which is not what you need any more of! For him it was one of the first things he tolerated. He also liked chicken bouillon broth. You'll get there!

Barbara

swopoe

Thanks

Barbara and Karen. I will look into those recommendations, Barbara. He had not lost any weight as of his check on the 22nd but who knows now. He had some pasta for dinner with teriyaki sauce even though he said it didn't taste like much and some broccoli. He is still drinking lots of water, so that is good. Karen, I am sure things will improve and I am so proud of you for making it through your treatments. You show me that my husband can make it through too. ❤️

the_wife

Doing good!

It sounds like he is doing really good! Right from the start my husband couldn't eat much. At the halfway point he was barely eating - just poached or scrambled eggs, Malt O Meal, Ensure and Scandishakes and that was about all he could do. He had mucositis and nausea so bad that he all he could eat were shakes. He was super sensitive to smells so he couldn't go near a kitchen. He felt so bad he rarely left his chair except to go to appointments. He ran a constant high temp. About that time he ended up in the hospital due to a fever and basically quit eating - mostly due to the pain, I think. That's when he got the PEG.

I think your husband is doing fantastic by eating all those things you listed. Good thing he already had the PEG in place. And he has a good attitude which will go a loooong way! 

Hang in there, you two!

CivilMatt

stay on top

swopoe,

Tell him not to worry about taste right now.  Be more concerned with finishing treatments well-nourished and fully hydrated. 

Try eating what you can, drink what you can, PEG when needed and keep swallowing and drinking water.

Don’t be down in the dumps, you are managing wonderfully and your life will return to (new) normal.

Matt

wmc

One day at a time, and half way is very good.

Being half way is very good. Yes the days seem very long, but the weeks seem faster. A very wise and supportive man on here always will say; stay hydrated, and drink water you need to keep swallowing. I too have found that is some of the best you can have. You are at the rougher spot in the road,

  But doing so well. The road will soon smooth out and then you will know, yes it was worth it. Know you are both in my thoughts and prayers.

Bill

 

Ladylacy

Your Husband

My husband underwent radaition and chemo for layrngeal cancer.  We were told upfront that head and neck cancer treatment is the worse there is and they weren't wrong.  He had a peg tube inserted before treatment started and we were very glad of that.  He was unable to eat anything by mouth within 2 weeks of starting radiation so the peg tube was a life saver.  He did try to sip water because we were told he needed to keep his swallowing muscles active.  The cisplatin did a job on him and they had to stop it.  We found out when they had to do surgery that they had to reconstruct his throat due to the radiation.

We had a home care nurse that came in and worked with him on swallowing exercises during treatment, but since we didn't know his throat was just about completely closed off, it didn't help.  Just remember every one is different in how they respond to treatment.  Many get thru the radiation without having to use a peg tube and then many don't.  The main thing we were told was to keep him hydrated and to try and swallow constantly.  The peg tube for us was a life saver during all of his treatment.  But it sounds like your husband is doing good because he is still able to eat by mouth.  What about apple sauce and puddings, they would just slide down and popsicles to suck on?

Wishing you and yours peace and comfort -- Sharon

MrsBD

Believe it or not, your

Believe it or not, your husband is eating a pretty well-balanced diet, especially for being halfway through treatment. I didn't lose my sense of taste, and the only things that tasted bad were citrus foods and sour cream, but I just wasn't hungry. My mouth and throat hurt like crazy too. Savory tastes were more tempting. On an earlier post, someone mentioned Chinese food. In addition to the food you listed, I ate egg foo yung, Stove Top stuffing, green beans, carrots, sweet potatoes and a variety of soups. 

Your reaction to the whole cancer treatment actually seems a lot like my husband's. He kept saying he was sorry and felt useless. Don't worry. We appreciate everything you are doing, and just knowing you try means a lot. When you look back on this experience in a few months, you'll be surprised at how quickly it went. You are in my prayers. 

Rotorpilot

I understand the disappointment

food just doesn't have the familiar flavor. It doesn't satisfy your expectations. It's going to get even worse, I'm sorry to say.

the tube is going to get you through. Use it! Keep your fluid intake high! Otherwise, youll become weak, dizzy, and. Dehydrated.

not good! You'll have good pain meds. Use them to keep yourself comfortable. Take each day as another rong in the ladder. These side effects are temporary, for the most part. You will enjoy food, and life again! But you must be patient, and don't quit!!

Duggie88

Things will get better

I ate a lot of scrambled eggs. I bought a blender that also heated so I would make my own soup that became a broth. It also came in handy for smoothies and milk shakes. I use to also eat alot of milk toast. Heat milk and pour it over buttered toast. I use to use salt and pepper just so it had some taste.

I am surprised he still likes coffee, Into my second week I couldn't even stomach the smell of it brewing and it took 5 months after radiation to even take a sip of it.

He is living Bill Murry's Ground Hog Day. Every day seems to be the same. Soon he will break free of that and the healing process will brighten his days.

Life is good

      Jeff

swopoe

Thank you

everyone. Quick on the coffee...he can't stand coffee; just the ice cream. He is missing his daily Starbucks! LOL We do have a blender, and he is making smoothies and ice cream shakes each day, which is good. Along with his tube feedings, he is trying hard to get in his calories. He is sick of eggs, but he still eats them (with avocado and butter).

i know this is all temporary, hopefully, as does he. And in the scheme of things, it isn't a big deal. His doc yesterday said he is doing great for being in his fourth week of treatment. My husband has mouth thrush now though, but hopefully the anti fungal pills will help with that, and the doc said he may feel even better than he does now in a few days.

i also am fully aware of what cancer's "job" is as kcass said. I am taking anti anxiety medicines because I am having trouble sleeping, and when I do, I have nightmares, and because I have started having panic attacks. I am a stay at home mom with three young kids. My 11 year old is afraid to hug his dad because of the tube. I can't imagine if I God forbid had to tell my 6 year old daughter that her dad was going to you know. And my almost 10 year old daughter is taking on more responsibility at home than she should have to. It just all sucks. And I know all of you know this already. so yes, losing his tastebuds for now and feeding from a tube is a small price to pay if it means my husband will be here with all of us. It is just still so hard.

 

the_wife

swopoe said:

Thank you

everyone. Quick on the coffee...he can't stand coffee; just the ice cream. He is missing his daily Starbucks! LOL We do have a blender, and he is making smoothies and ice cream shakes each day, which is good. Along with his tube feedings, he is trying hard to get in his calories. He is sick of eggs, but he still eats them (with avocado and butter).

i know this is all temporary, hopefully, as does he. And in the scheme of things, it isn't a big deal. His doc yesterday said he is doing great for being in his fourth week of treatment. My husband has mouth thrush now though, but hopefully the anti fungal pills will help with that, and the doc said he may feel even better than he does now in a few days.

i also am fully aware of what cancer's "job" is as kcass said. I am taking anti anxiety medicines because I am having trouble sleeping, and when I do, I have nightmares, and because I have started having panic attacks. I am a stay at home mom with three young kids. My 11 year old is afraid to hug his dad because of the tube. I can't imagine if I God forbid had to tell my 6 year old daughter that her dad was going to you know. And my almost 10 year old daughter is taking on more responsibility at home than she should have to. It just all sucks. And I know all of you know this already. so yes, losing his tastebuds for now and feeding from a tube is a small price to pay if it means my husband will be here with all of us. It is just still so hard.

 

Yes, he's doing great!

Swopoe,

It's good you are taking meds to help with the anxiety. This is very hard on the caregiver, that's for sure. I can't imagine doing it with children. It has an effect on everyone - friends included.

I think you are lucky in that your husband is actually doing the shakes and feedings himself. I made every single "meal" for my hubby, kept track of and administered every dose of med, almost every hour on the hour for his many side effects as they popped up, and did every single feeding. To this day, I am still the one who prepares all his food, whether it be real food or shakes. I count his calorie and protein intake and tally it all up to make sure he's getting adequate nutrition. I think if it had been up to him, he would have just quit or starved to death. Please understand, I'm only trying to share my experience to try to make you feel better, not worse. This is not an ideal situation.

By the 4th week my husband was using the tube exclusively. He was repulsed by all foods. Even the feedings made him sick. He had a gag reflex that made him want to throw up everytime he tried to brush his teeth or clear his throat. He developed an aversion to food that lasts to this day.

I've heard that the radiation basically burns off your taste buds, so with no taste and no hunger and no desire to eat, mealtimes can be very grim indeed. This part has gotten better for us at 3 months out, but not by much. At least all the nasty side effects are gone. Well, except for those two things (lack of taste and hunger).

It's not a good thing that he has become so dependent on me and I wouldn't ever recommend doing it this way, but we fell into a pattern with this extreme caregiving on my part. Like you, I'd do anything to cure his cancer and if that's what we have to do, I'll do it gladly. Whatever it takes. I agree, it shouldn't have to be THIS hard, but that's the reality until they come up with a better way to treat this type of cancer. It really sucks.

You've probably heard it a billion times, but it's sooo important to take care of you. If you can get out, do some shopping or get together with a friend, have some fun for an afternoon, by all means DO IT and don't feel guilty. You have my permission, from one caregiver to another. I know everyone says that and it's hard to do. I should talk, lol!

Take care.

Barbaraek

the_wife said:

Yes, he's doing great!

Swopoe,

It's good you are taking meds to help with the anxiety. This is very hard on the caregiver, that's for sure. I can't imagine doing it with children. It has an effect on everyone - friends included.

I think you are lucky in that your husband is actually doing the shakes and feedings himself. I made every single "meal" for my hubby, kept track of and administered every dose of med, almost every hour on the hour for his many side effects as they popped up, and did every single feeding. To this day, I am still the one who prepares all his food, whether it be real food or shakes. I count his calorie and protein intake and tally it all up to make sure he's getting adequate nutrition. I think if it had been up to him, he would have just quit or starved to death. Please understand, I'm only trying to share my experience to try to make you feel better, not worse. This is not an ideal situation.

By the 4th week my husband was using the tube exclusively. He was repulsed by all foods. Even the feedings made him sick. He had a gag reflex that made him want to throw up everytime he tried to brush his teeth or clear his throat. He developed an aversion to food that lasts to this day.

I've heard that the radiation basically burns off your taste buds, so with no taste and no hunger and no desire to eat, mealtimes can be very grim indeed. This part has gotten better for us at 3 months out, but not by much. At least all the nasty side effects are gone. Well, except for those two things (lack of taste and hunger).

It's not a good thing that he has become so dependent on me and I wouldn't ever recommend doing it this way, but we fell into a pattern with this extreme caregiving on my part. Like you, I'd do anything to cure his cancer and if that's what we have to do, I'll do it gladly. Whatever it takes. I agree, it shouldn't have to be THIS hard, but that's the reality until they come up with a better way to treat this type of cancer. It really sucks.

You've probably heard it a billion times, but it's sooo important to take care of you. If you can get out, do some shopping or get together with a friend, have some fun for an afternoon, by all means DO IT and don't feel guilty. You have my permission, from one caregiver to another. I know everyone says that and it's hard to do. I should talk, lol!

Take care.

I could have written the above post...

and it has a lot of wisdom in it. I too, took on much of the care and responsibility for the care and feeding of my husband...and I still do. Part of it is habit, and part of it because I don't have enough belief that he will do it himself (he tends to prioritize work and other things over tube feeds, eating, neck stretches etc.) Sometimes I feel like such a harpy nagging do this, do that. Sometimes I do things willingly, lovingly and then am disappointed when it doesn't help (such as trying a new recipe or solution to a problem). Sometimes I feel like a mom...when I want to be a wife, not a mom. The best way for me to look at it is as a "coach" with the goal of assisting him reach his potential and take on responsibility for himself.

All this takes a toll on your pysche...especially when you have other roles to fill - like being a mom to young children as you are. I'm a bit luckier because our kiddos (25 and 22) have either flown the coop or are getting ready to take flight. My anxiety level would be off the scale if I had young ones at home. I am glad you have sought out some help in the form of anti-anxiety meds...are you able to get some counseling too? It helps a lot to be able to talk with someone. Try to carve out a little time - even if it is a small amount - that you can do something you love. Let others do things for you once in a while.

Your husband is going through the toughest part right now. He WILL get through it, the days (even if they are awful) will go by and then it will be over. Recovery has it's own challenges and you will meet them when you get there. For now, just keep putting one foot in front of the other, breathe, and hang in there. We're here for you, keep posting, and we'll keep praying.

Barbara

the_wife

Barbaraek said:

I could have written the above post...

and it has a lot of wisdom in it. I too, took on much of the care and responsibility for the care and feeding of my husband...and I still do. Part of it is habit, and part of it because I don't have enough belief that he will do it himself (he tends to prioritize work and other things over tube feeds, eating, neck stretches etc.) Sometimes I feel like such a harpy nagging do this, do that. Sometimes I do things willingly, lovingly and then am disappointed when it doesn't help (such as trying a new recipe or solution to a problem). Sometimes I feel like a mom...when I want to be a wife, not a mom. The best way for me to look at it is as a "coach" with the goal of assisting him reach his potential and take on responsibility for himself.

All this takes a toll on your pysche...especially when you have other roles to fill - like being a mom to young children as you are. I'm a bit luckier because our kiddos (25 and 22) have either flown the coop or are getting ready to take flight. My anxiety level would be off the scale if I had young ones at home. I am glad you have sought out some help in the form of anti-anxiety meds...are you able to get some counseling too? It helps a lot to be able to talk with someone. Try to carve out a little time - even if it is a small amount - that you can do something you love. Let others do things for you once in a while.

Your husband is going through the toughest part right now. He WILL get through it, the days (even if they are awful) will go by and then it will be over. Recovery has it's own challenges and you will meet them when you get there. For now, just keep putting one foot in front of the other, breathe, and hang in there. We're here for you, keep posting, and we'll keep praying.

Barbara

Caregiving

Barbara, I'm so glad to hear I'm not the only wife/coach/nurse/mother/caregiver out there! I, too, struggle with the various roles. It's really a lonely journey for both patient and caregiver and there are so many ways it impacts those going through it.

To other caregivers going through this I would say try to look for the silver lining because it's always there. The way I've been able to cope, especially during the treatment, was to distance myself a bit from the pain and suffering and attend to my "patient" as a nurse would. When none of the meds or magic potions seemed to help, I was the wife, giving a hug and a kiss knowing that is medicine, too. I never thought of myself as the mothering type (we didn't have children), but it's there and I found it easily enough.

During the recovery phase I am now the coach. Reminding him daily that yes, he will get through this, we came this far and we're not quitting now, so eat that cereal and finish those Ensures - you've got 800 calories to go (so get going, ten-hutl) LOL! I have to admit I don't like this role, but it's necessary...just like the others are.

Those who've never gone through this kind of cancer can ever know what it's like. Those who have never been a caregiver can ever know what you go through. All of our stories are different. Only you know what you're going through. So be kind and forgiving to yourself. You're doing the best you can.

wmc

the_wife said:

Caregiving

Barbara, I'm so glad to hear I'm not the only wife/coach/nurse/mother/caregiver out there! I, too, struggle with the various roles. It's really a lonely journey for both patient and caregiver and there are so many ways it impacts those going through it.

To other caregivers going through this I would say try to look for the silver lining because it's always there. The way I've been able to cope, especially during the treatment, was to distance myself a bit from the pain and suffering and attend to my "patient" as a nurse would. When none of the meds or magic potions seemed to help, I was the wife, giving a hug and a kiss knowing that is medicine, too. I never thought of myself as the mothering type (we didn't have children), but it's there and I found it easily enough.

During the recovery phase I am now the coach. Reminding him daily that yes, he will get through this, we came this far and we're not quitting now, so eat that cereal and finish those Ensures - you've got 800 calories to go (so get going, ten-hutl) LOL! I have to admit I don't like this role, but it's necessary...just like the others are.

Those who've never gone through this kind of cancer can ever know what it's like. Those who have never been a caregiver can ever know what you go through. All of our stories are different. Only you know what you're going through. So be kind and forgiving to yourself. You're doing the best you can.

The_Wife Caregiver

This type of cancer, the treatmens is the second hardest to go through. [Leukemia is #1, per doctors] As for the caregiver who is also having to do EVERYTHING, cook clean run the house, add children then 2x harder as keep them calm and reminding everyone is going to make it. You will feel there pain, even if there is none, just because you care so much. That is why both need to talk and keep each other informed so if he doesn't hurt you don't need to ethor.

 Most of your friends slowly disapear because they just can't take it and don't know what to say to you. They are now afread. This happened to someone they knew so it "could happen them". Now your "true" friends will alwasy be there, but they are afread to ask or talk about it so you have to let them know it is ok to talk about it or ask anything. Now you have the general careing ones who will always say....."I can imagen what you are going through". Be nice they do care and yes, They have NO KIND OF IDEA what you go through. 

I had a friend/coworker say I can imagen what that you went through...........So, I replied, no, you have know Idea what I went through and still do. Now if you want a small Idea, When you get home don't talk to anyone for two hours, just two hours, not a single word write all your questions and answers on paper. Then you will only have a glemps what iI went through. Oh, in the mornong when you go to the bathroom to get ready, don't forget to cough so hard you turn red all the way to the center of your chest, I do.

Now I proply should not have said anything, because he ment well. I heard that almost everyday for weeks. Now my frind at work would say I can't imagen what you are going through but, let me know if I can help. Ben was always there for me, and I hope someday I can return the kindness.

This is why we say for the caregiver it is very hard and you need to set some time every day that is just for you. You need a 30 min or hour everyday that is set aside for just you. You see, you need to rest and get a recharge daily or you start running on empty and then you can't help anyone. That is why this group is so good for all. We have caregivers and Patients, and we do know what you are going through and understand. We often tell peolpe it is good to come here and just vent and when you write it down it somehow does help just getting said. We all do it.

You are doing a very good job dealing with. You both will get through and then get to some kinda "New" normal.

Bill

swopoe

wmc said:

The_Wife Caregiver

This type of cancer, the treatmens is the second hardest to go through. [Leukemia is #1, per doctors] As for the caregiver who is also having to do EVERYTHING, cook clean run the house, add children then 2x harder as keep them calm and reminding everyone is going to make it. You will feel there pain, even if there is none, just because you care so much. That is why both need to talk and keep each other informed so if he doesn't hurt you don't need to ethor.

 Most of your friends slowly disapear because they just can't take it and don't know what to say to you. They are now afread. This happened to someone they knew so it "could happen them". Now your "true" friends will alwasy be there, but they are afread to ask or talk about it so you have to let them know it is ok to talk about it or ask anything. Now you have the general careing ones who will always say....."I can imagen what you are going through". Be nice they do care and yes, They have NO KIND OF IDEA what you go through. 

I had a friend/coworker say I can imagen what that you went through...........So, I replied, no, you have know Idea what I went through and still do. Now if you want a small Idea, When you get home don't talk to anyone for two hours, just two hours, not a single word write all your questions and answers on paper. Then you will only have a glemps what iI went through. Oh, in the mornong when you go to the bathroom to get ready, don't forget to cough so hard you turn red all the way to the center of your chest, I do.

Now I proply should not have said anything, because he ment well. I heard that almost everyday for weeks. Now my frind at work would say I can't imagen what you are going through but, let me know if I can help. Ben was always there for me, and I hope someday I can return the kindness.

This is why we say for the caregiver it is very hard and you need to set some time every day that is just for you. You need a 30 min or hour everyday that is set aside for just you. You see, you need to rest and get a recharge daily or you start running on empty and then you can't help anyone. That is why this group is so good for all. We have caregivers and Patients, and we do know what you are going through and understand. We often tell peolpe it is good to come here and just vent and when you write it down it somehow does help just getting said. We all do it.

You are doing a very good job dealing with. You both will get through and then get to some kinda "New" normal.

Bill

Well it is a new year, and I

Well it is a new year, and I am so glad this group is here- caregivers and patients alike. It is true that no one really does understand except for you guys and gals. I know how important it is for the caregiver to take time for themselves- and my husband understands that too. Even running to the grocery store by myself is a luxury, and my husband makes sure I get time alone. Right now he is playing on the wii with our kids and I am just hanging out alone in peace. It is a wonder what a few minutes like that can do for someone.

i do know we will get through this, all of us, but the days can be tough sometimes. We just have to keep on keeping on. I hope all of us have a great 2016. Love and prayers to all.

Hondo

Hi swopoe

 

Get a magic-bullet blended, my wife & caretaker makes all my food with the bullet, I love Chinese food and Pizza now and then. She puts it in the blended with some Veggie broth and makes is somewhat watery so it goes in my PEG tube with no problem. Another thing I love is mango and mix fruits with Cashews, Pecans & Granola, I eat that mostly at night before going to bed.

Keep him focus on the finish line and very soon you will both cross over it.

 

God Bless

Tim

 

kdot2003

Duggie88 said:

Things will get better

I ate a lot of scrambled eggs. I bought a blender that also heated so I would make my own soup that became a broth. It also came in handy for smoothies and milk shakes. I use to also eat alot of milk toast. Heat milk and pour it over buttered toast. I use to use salt and pepper just so it had some taste.

I am surprised he still likes coffee, Into my second week I couldn't even stomach the smell of it brewing and it took 5 months after radiation to even take a sip of it.

He is living Bill Murry's Ground Hog Day. Every day seems to be the same. Soon he will break free of that and the healing process will brighten his days.

Life is good

      Jeff

hahaha I love it, groundhog

hahaha I love it, groundhog day.  That is SO TRUE

Rotorpilot

You're hopefully still hanging in there!!

the last days of radiation became awfully difficult for me. Every night, 2-3 hours after the treatment, my pain would increase and I'd be vomitting for hours. Drinking water, which is essential, particularly to keep your swallow reflexes working, became very difficult. My wife is a critiical care nurse; even she felt her skills and patience tested daily. But she was the reason I hung in!! I came very close to throwing in the towel! Don't!! There are many complications. Get medical questions answered by your treatment staff. Get tips on "how to" from people on the boards who have already been there. I have great news for you! The end of treatment is coming, and along with it.......the rewards! They are many!