Husband Just Diagnosed - UPDATE

BeenThereDoneThat

kimmygarland said:

UPDATE
WOW - it seems like a hundred years since I made this thread. We have completed six weeks of induction chemo and now 4 weeks of radiation - 2 weeks of chemo thrown in there also. We start week 5, which is a chemo/radiation week tomorrow. Then we only have one week of radiation left! Thank God... although I know it will still be bad for a couple weeks after treatment ends, it is one more step forward in this horrible journey.

My husband is experiencing the miriad of side effects and troubles. He has the erbitux rash, but it's not bad. He has the horrible burning throat, of course (taking hydrocodone now, but we have the patches when needed). But his most annoying side effect at the moment is the huge amount of mucous and the coughing and gagging that is causing. We have a prescription rinse (acetylcysteine) that we mix with soda that he gargles with, but I can't tell that it's doing any good. Any SUGGESTIONS?

His spirits are low, and I am trying to shore him up but it is not easy. He sleeps a lot and I hope that is ok. He does not have a peg tube (his stupid decision, I tried to talk him into getting it) and I spend a lot of time nagging about getting fluids in. At this point he is getting in 60+ oz water plus two 900 cal shakes a day. Docs tell us he is doing ok with that. Hopefully he will be able to continue getting it in. That is a HUGE concern with me.

I could go on for days about all this, but you all know what we are going through. I have a problem getting all the rinses and medicines down him (he has magic mouthwash, rinse for mouth sores, rinse for thrush, regular pills, pain pills, flouride trays, and on and on...) and feel guilty about nagging him but even more guilty when we don't get it all in.

Another question - regarding the mucous - anybody use a HUMIDIFIER for it?? I wonder if that would help?

This site has been an invaluable resource and I have learned so much. Had it not been for this site I would not have known to expect a lot of this stuff. Docs try to tell us some stuff but I think they don't want to scare us.

Keep it up!
I understand what you are experiencing.......I owe so much to my wife staying on me to keep up with the Boost and Gatorade. Left on my own, I wouldn't have made it through. My wife took the brunt of my recovery.....and bad moods! Remember to take time for yourself....but your hard work will be rewarded when you start to see the improvement that WILL come.

Here I am almost 6 years later.....and doing well. There is hope.

The mucous was definitely the worst thing for me. I would cough it up all night. In the mornings, I would have a huge pile of kleenex on the floor next to the bed. My feeling was that the mucous was my salivary glands fighting for their lives!....and I still have some spit, so it is good that they keep fighting. Again, I'm not a doc, but this feeling helped get me through.

I have heard that carbonated beverages help with mucous. I didn't hear this 'til after I was 'better'. Might be worth a try (coke, sprite, club soda, sparkling water). The magic mouthwash was a help, but I didn't like it much. Unfortunately, I have to say that time is the best thing....the body does bounce back once the 'cure' stops beating the crap out of you! Sound like you are in the home stretch. Keep up the good work.

Remember, you have a lot of us out here rooting and praying for you and your husband.

George

thegirlfriend

kimmygarland said:

UPDATE
WOW - it seems like a hundred years since I made this thread. We have completed six weeks of induction chemo and now 4 weeks of radiation - 2 weeks of chemo thrown in there also. We start week 5, which is a chemo/radiation week tomorrow. Then we only have one week of radiation left! Thank God... although I know it will still be bad for a couple weeks after treatment ends, it is one more step forward in this horrible journey.

My husband is experiencing the miriad of side effects and troubles. He has the erbitux rash, but it's not bad. He has the horrible burning throat, of course (taking hydrocodone now, but we have the patches when needed). But his most annoying side effect at the moment is the huge amount of mucous and the coughing and gagging that is causing. We have a prescription rinse (acetylcysteine) that we mix with soda that he gargles with, but I can't tell that it's doing any good. Any SUGGESTIONS?

His spirits are low, and I am trying to shore him up but it is not easy. He sleeps a lot and I hope that is ok. He does not have a peg tube (his stupid decision, I tried to talk him into getting it) and I spend a lot of time nagging about getting fluids in. At this point he is getting in 60+ oz water plus two 900 cal shakes a day. Docs tell us he is doing ok with that. Hopefully he will be able to continue getting it in. That is a HUGE concern with me.

I could go on for days about all this, but you all know what we are going through. I have a problem getting all the rinses and medicines down him (he has magic mouthwash, rinse for mouth sores, rinse for thrush, regular pills, pain pills, flouride trays, and on and on...) and feel guilty about nagging him but even more guilty when we don't get it all in.

Another question - regarding the mucous - anybody use a HUMIDIFIER for it?? I wonder if that would help?

This site has been an invaluable resource and I have learned so much. Had it not been for this site I would not have known to expect a lot of this stuff. Docs try to tell us some stuff but I think they don't want to scare us.

your husband is a mirror to
your husband is a mirror to my long distance boyfriends issues. He just started week 2 out of treatment. I understand that it can feel worse the couple of weeks after things stop. He had 6 weeks of radiation, 1 chemo a week, the last 2 weeks radiation twice daily, with 4 hour hydrations daily for the last 2 weeks. He has gone home, feels horrible. Im not there.
I live 8 hours away. He doesnt want me there to see him this way. He too has the rash, another friend went to his house and saw him, said his face is all red, is that the rash or is that like sunburn from the direct radiation? I dont know. breaking out as well as peeling too. So much mucous he doesnt even call anymore. He just txts when he feels like it. He never got the feeding tube, lost 40 pounds, and is having the worst time trying to get anything down his raw throat. Soooo much pain. Also taking meds, oxycodone I believe. Also has thrush and got a new med for that too. does all the rinsing, the flouride trays everyday, all of it. He does it all by himself, takes everything the way he is supposed to, forgets nothing. Im very grateful that way. But he is very depressed and sickly all the time.

Tonight he dropped on me that he is deciding whether to get the feeding tube put in tmorrow. Tomorrow! never even mentioned it or said a word in passing. thats how depressed he is. doesnt tell me as much as before. I dont ask alot of questions because i know how he tires and his patience level is almost null. I txt him and he says nothing most of the time. Much of the time he is sleeping, but even when he is awake, sometimes he answers, sometimes he doesnt.
I envy that so many of you get to be with your loved one even if its just to be around in the house. mine doesnt want that, there isnt anything for me to do there anyway he tells me. Im sure he just thinks he is going to gross me out or something. I think he doesnt want me to see him this way. I dont care, but Im not so sure that I would want anyone seeing me either.
How can I argue that point with him? I try to encourage him, but how do the words, it will get better, this too shall pass, keep from sounding hollow?

All of this rips my heart up that he continues to be in such pain, its depressing me as well.
I pray all of the time, not for him to be cured. He had cancer, the tumor is dissolved, just short of a scan, the cancer seems to be gone so he is a survivor. I simply pray for just a little relief enough to encourage him and the strength to deal with it all.


thegirlfriend

delnative

kimmygarland said:

UPDATE
WOW - it seems like a hundred years since I made this thread. We have completed six weeks of induction chemo and now 4 weeks of radiation - 2 weeks of chemo thrown in there also. We start week 5, which is a chemo/radiation week tomorrow. Then we only have one week of radiation left! Thank God... although I know it will still be bad for a couple weeks after treatment ends, it is one more step forward in this horrible journey.

My husband is experiencing the miriad of side effects and troubles. He has the erbitux rash, but it's not bad. He has the horrible burning throat, of course (taking hydrocodone now, but we have the patches when needed). But his most annoying side effect at the moment is the huge amount of mucous and the coughing and gagging that is causing. We have a prescription rinse (acetylcysteine) that we mix with soda that he gargles with, but I can't tell that it's doing any good. Any SUGGESTIONS?

His spirits are low, and I am trying to shore him up but it is not easy. He sleeps a lot and I hope that is ok. He does not have a peg tube (his stupid decision, I tried to talk him into getting it) and I spend a lot of time nagging about getting fluids in. At this point he is getting in 60+ oz water plus two 900 cal shakes a day. Docs tell us he is doing ok with that. Hopefully he will be able to continue getting it in. That is a HUGE concern with me.

I could go on for days about all this, but you all know what we are going through. I have a problem getting all the rinses and medicines down him (he has magic mouthwash, rinse for mouth sores, rinse for thrush, regular pills, pain pills, flouride trays, and on and on...) and feel guilty about nagging him but even more guilty when we don't get it all in.

Another question - regarding the mucous - anybody use a HUMIDIFIER for it?? I wonder if that would help?

This site has been an invaluable resource and I have learned so much. Had it not been for this site I would not have known to expect a lot of this stuff. Docs try to tell us some stuff but I think they don't want to scare us.

Mucus sucks
For me, the mucus was the worst side effect of all, and none of my doctors or nurses warned me it would be that bad. I was always hacking and gacking into a Kleenex, the sink or any other nearby receptacle. I'd seriously thought about getting a spittoon.
Unfortunately, I didn't come up with anything that got rid of it or even reduced it. About the only pointer I can offer is to give hubby an extra pillow or two at night. Keeping my head elevated was of some help, and I found myself sleeping a little better.
Time was the great healer. I was miserable for a month, but it gradually diminished and pretty much went away. Now, 13 months later, I still gargle with Biotene mouthwash when I get up in the morning, and I usually hack out a little mucus then, but that's it for the rest of the day.
I know it's a tired old cliche, but it is always darkest before the dawn. It's about 4 a.m. for your husband, and he has a couple of hours left to go.
Both of you hang in there: It will get better!

--Jim in Delaware

kimmygarland

delnative said:

Mucus sucks
For me, the mucus was the worst side effect of all, and none of my doctors or nurses warned me it would be that bad. I was always hacking and gacking into a Kleenex, the sink or any other nearby receptacle. I'd seriously thought about getting a spittoon.
Unfortunately, I didn't come up with anything that got rid of it or even reduced it. About the only pointer I can offer is to give hubby an extra pillow or two at night. Keeping my head elevated was of some help, and I found myself sleeping a little better.
Time was the great healer. I was miserable for a month, but it gradually diminished and pretty much went away. Now, 13 months later, I still gargle with Biotene mouthwash when I get up in the morning, and I usually hack out a little mucus then, but that's it for the rest of the day.
I know it's a tired old cliche, but it is always darkest before the dawn. It's about 4 a.m. for your husband, and he has a couple of hours left to go.
Both of you hang in there: It will get better!

--Jim in Delaware

ANOTHER UPDATE
Well, we have had an exciting 24 hours here. When Bob went in for chemo yesterday his potassium was way high and he was very dehydrated (remember, the stupid decision he made not to get the feeding tube?). SOOOO, they threw his butt in the hospital to get the potassium down and hydrate, hydrate, hydrate. AND he will be getting the tube. THANK THE LORD.

He was feeling really bad through the weekend and I knew something wasn't "right", ya know? I was so glad to get to that chemo office yesterday and when they said they were putting him in the hospital I was actually relieved. That sounds so selfish, but I am not a nurse and am only capable of so much.

So he will be there until at least tomorrow (depending on how quickly his levels balance out and the tube insertion goes). He is in good hands. Of course, I will be a fixture up there to make sure all is well!

pk

kimmygarland said:

ANOTHER UPDATE
Well, we have had an exciting 24 hours here. When Bob went in for chemo yesterday his potassium was way high and he was very dehydrated (remember, the stupid decision he made not to get the feeding tube?). SOOOO, they threw his butt in the hospital to get the potassium down and hydrate, hydrate, hydrate. AND he will be getting the tube. THANK THE LORD.

He was feeling really bad through the weekend and I knew something wasn't "right", ya know? I was so glad to get to that chemo office yesterday and when they said they were putting him in the hospital I was actually relieved. That sounds so selfish, but I am not a nurse and am only capable of so much.

So he will be there until at least tomorrow (depending on how quickly his levels balance out and the tube insertion goes). He is in good hands. Of course, I will be a fixture up there to make sure all is well!

kimmyg
They can be rather stubborn, can't they. I am so happy my husband had his tube placed prior to radiation as it was a life saver for him. He is now 5 weeks post treatment and will have it pulled this week. He hasn't used it for over 2 weeks. He drinks his Boost and is eating 3 times a day - foods such as: cheese omlets, poached eggs, noodles, chicken ala king, egg salad sandwiches - he has even been eating a piece of toast in the morning and this weekend went out for egg foo yung. He has eaten the small hamburgers from Mc Donalds, roasted chicken & mashed potatoes and gravy, cooked carrots, meatloat .....so you see things do get better. He still has some pain in his mouth but I think he is doing marvelously considering what he's been through.
You will need to be the Nazi for him when it comes to water and feeding, and in the end things will evolve. Keep on keeping on. PK

cwcad

pk said:

kimmyg
They can be rather stubborn, can't they. I am so happy my husband had his tube placed prior to radiation as it was a life saver for him. He is now 5 weeks post treatment and will have it pulled this week. He hasn't used it for over 2 weeks. He drinks his Boost and is eating 3 times a day - foods such as: cheese omlets, poached eggs, noodles, chicken ala king, egg salad sandwiches - he has even been eating a piece of toast in the morning and this weekend went out for egg foo yung. He has eaten the small hamburgers from Mc Donalds, roasted chicken & mashed potatoes and gravy, cooked carrots, meatloat .....so you see things do get better. He still has some pain in his mouth but I think he is doing marvelously considering what he's been through.
You will need to be the Nazi for him when it comes to water and feeding, and in the end things will evolve. Keep on keeping on. PK

Good to hear the update!!!
I am so glad to read that your husband got a food peg. I hated mine but in the long run it was last step in getting better. Without it I would have died from malnutrition. I simply could not eat or swallow anything other than pills and water.

I had base of tongue cancer I had so much mucous that I did employ a spit cup. In fact I had different one in various places in the house just to make sure I did not try and swallow the stuff. It would only go half way down. It would then force me to throw up. After throwing up a few times I realized that throwing up would not become an option for me. Throwing up was horrible. So is the spit cup horrible. I had to get over the embarrassment I felt doing it in front of my family. No one ever said anything to me but I know that my kids and my wife really detested my spit cups.

I found that the food pump was my best solution. I tried doing it with a hand pump. It did work for me. I also fought nauseousness every time I did it by hand. What ever you choose keep trying to make it better. Options should always be considered. Stay hydrated. You simply cannot get enough liquids. I hydrated through my IV port five days a week and ended after several months with one day a week. There were a few times I had to go to the emergency room to get a couple of bags injected into me on the weekends.

It does get better. Sounds like your husband is making great strides. Congratulations to you and to him as well!!

cwcad

pk said:

kimmyg
They can be rather stubborn, can't they. I am so happy my husband had his tube placed prior to radiation as it was a life saver for him. He is now 5 weeks post treatment and will have it pulled this week. He hasn't used it for over 2 weeks. He drinks his Boost and is eating 3 times a day - foods such as: cheese omlets, poached eggs, noodles, chicken ala king, egg salad sandwiches - he has even been eating a piece of toast in the morning and this weekend went out for egg foo yung. He has eaten the small hamburgers from Mc Donalds, roasted chicken & mashed potatoes and gravy, cooked carrots, meatloat .....so you see things do get better. He still has some pain in his mouth but I think he is doing marvelously considering what he's been through.
You will need to be the Nazi for him when it comes to water and feeding, and in the end things will evolve. Keep on keeping on. PK

Good to hear the update!!!
I am so glad to read that your husband got a food peg. I hated mine but in the long run it was last step in getting better. Without it I would have died from malnutrition. I simply could not eat or swallow anything other than pills and water.

I had base of tongue cancer I had so much mucous that I did employ a spit cup. In fact I had different one in various places in the house just to make sure I did not try and swallow the stuff. It would only go half way down. It would then force me to throw up. After throwing up a few times I realized that throwing up would not become an option for me. Throwing up was horrible. So is the spit cup horrible. I had to get over the embarrassment I felt doing it in front of my family. No one ever said anything to me but I know that my kids and my wife really detested my spit cups.

I found that the food pump was my best solution. I tried doing it with a hand pump. It did work for me. I also fought nauseousness every time I did it by hand. What ever you choose keep trying to make it better. Options should always be considered. Stay hydrated. You simply cannot get enough liquids. I hydrated through my IV port five days a week and ended after several months with one day a week. There were a few times I had to go to the emergency room to get a couple of bags injected into me on the weekends.

It does get better. Sounds like your husband is making great strides. Congratulations to you and to him as well!!

cwcad

pk said:

kimmyg
They can be rather stubborn, can't they. I am so happy my husband had his tube placed prior to radiation as it was a life saver for him. He is now 5 weeks post treatment and will have it pulled this week. He hasn't used it for over 2 weeks. He drinks his Boost and is eating 3 times a day - foods such as: cheese omlets, poached eggs, noodles, chicken ala king, egg salad sandwiches - he has even been eating a piece of toast in the morning and this weekend went out for egg foo yung. He has eaten the small hamburgers from Mc Donalds, roasted chicken & mashed potatoes and gravy, cooked carrots, meatloat .....so you see things do get better. He still has some pain in his mouth but I think he is doing marvelously considering what he's been through.
You will need to be the Nazi for him when it comes to water and feeding, and in the end things will evolve. Keep on keeping on. PK

Good to hear the update!!!
I am so glad to read that your husband got a food peg. I hated mine but in the long run it was last step in getting better. Without it I would have died from malnutrition. I simply could not eat or swallow anything other than pills and water.

I had base of tongue cancer I had so much mucous that I did employ a spit cup. In fact I had different one in various places in the house just to make sure I did not try and swallow the stuff. It would only go half way down. It would then force me to throw up. After throwing up a few times I realized that throwing up would not become an option for me. Throwing up was horrible. So is the spit cup horrible. I had to get over the embarrassment I felt doing it in front of my family. No one ever said anything to me but I know that my kids and my wife really detested my spit cups.

I found that the food pump was my best solution. I tried doing it with a hand pump. It did work for me. I also fought nauseousness every time I did it by hand. What ever you choose keep trying to make it better. Options should always be considered. Stay hydrated. You simply cannot get enough liquids. I hydrated through my IV port five days a week and ended after several months with one day a week. There were a few times I had to go to the emergency room to get a couple of bags injected into me on the weekends.

It does get better. Sounds like your husband is making great strides. Congratulations to you and to him as well!!

cwcad

pk said:

kimmyg
They can be rather stubborn, can't they. I am so happy my husband had his tube placed prior to radiation as it was a life saver for him. He is now 5 weeks post treatment and will have it pulled this week. He hasn't used it for over 2 weeks. He drinks his Boost and is eating 3 times a day - foods such as: cheese omlets, poached eggs, noodles, chicken ala king, egg salad sandwiches - he has even been eating a piece of toast in the morning and this weekend went out for egg foo yung. He has eaten the small hamburgers from Mc Donalds, roasted chicken & mashed potatoes and gravy, cooked carrots, meatloat .....so you see things do get better. He still has some pain in his mouth but I think he is doing marvelously considering what he's been through.
You will need to be the Nazi for him when it comes to water and feeding, and in the end things will evolve. Keep on keeping on. PK

Good to hear the update!!!
I am so glad to read that your husband got a food peg. I hated mine but in the long run it was last step in getting better. Without it I would have died from malnutrition. I simply could not eat or swallow anything other than pills and water.

I had base of tongue cancer I had so much mucous that I did employ a spit cup. In fact I had different one in various places in the house just to make sure I did not try and swallow the stuff. It would only go half way down. It would then force me to throw up. After throwing up a few times I realized that throwing up would not become an option for me. Throwing up was horrible. So is the spit cup horrible. I had to get over the embarrassment I felt doing it in front of my family. No one ever said anything to me but I know that my kids and my wife really detested my spit cups.

I found that the food pump was my best solution. I tried doing it with a hand pump. It did work for me. I also fought nauseousness every time I did it by hand. What ever you choose keep trying to make it better. Options should always be considered. Stay hydrated. You simply cannot get enough liquids. I hydrated through my IV port five days a week and ended after several months with one day a week. There were a few times I had to go to the emergency room to get a couple of bags injected into me on the weekends.

It does get better. Sounds like your husband is making great strides. Congratulations to you and to him as well!!

kimmygarland

cwcad said:

Good to hear the update!!!
I am so glad to read that your husband got a food peg. I hated mine but in the long run it was last step in getting better. Without it I would have died from malnutrition. I simply could not eat or swallow anything other than pills and water.

I had base of tongue cancer I had so much mucous that I did employ a spit cup. In fact I had different one in various places in the house just to make sure I did not try and swallow the stuff. It would only go half way down. It would then force me to throw up. After throwing up a few times I realized that throwing up would not become an option for me. Throwing up was horrible. So is the spit cup horrible. I had to get over the embarrassment I felt doing it in front of my family. No one ever said anything to me but I know that my kids and my wife really detested my spit cups.

I found that the food pump was my best solution. I tried doing it with a hand pump. It did work for me. I also fought nauseousness every time I did it by hand. What ever you choose keep trying to make it better. Options should always be considered. Stay hydrated. You simply cannot get enough liquids. I hydrated through my IV port five days a week and ended after several months with one day a week. There were a few times I had to go to the emergency room to get a couple of bags injected into me on the weekends.

It does get better. Sounds like your husband is making great strides. Congratulations to you and to him as well!!

Today's News
Every day is a new day with this d&mn cancer, isn't it? I feel so bad for my husband - I so wish I could take this away. But I can't... and I need to realize there is only so much I can do. It is so hard.

They didn't put in the feeding tube today, wanted to give him one more day to hydrate and get his labs back in good order. They are looking good and procedure is scheduled for in the morning.

Honestly, I am scared of the tube - scared I will do something wrong, it will become infected (he is diabetic); however, it can't be worse than what he has been through the last week with the dehydration.

We talked to a nutritionist today and she explained that she will go through exactly how much fluid he should be putting down tube and how much "formula", and it will be calculated on his weight, etc. Then if he wants to swallow by mouth he can still do that anytime he wants to (and should a couple times a day to maintain the swallowing muscles).

They did take him for his radiation treatment today.... so one more behind us on that!

He is having a procedure done tonight late, right before he goes to bed, where they put in an NG tube because to put in the feeding tube they have to get a bunch of barium in his stomach and since he can't swallow it the only way to do it is through the NG tube. They will pull NG tube out during procedure to put in feeding tube. They are going to numb him up real good and give him some good meds. These treatments are torture.

I felt guilty leaving, but he sent me home to tend to the animals. I hate cancer.

thegirlfriend

kimmygarland said:

Today's News
Every day is a new day with this d&mn cancer, isn't it? I feel so bad for my husband - I so wish I could take this away. But I can't... and I need to realize there is only so much I can do. It is so hard.

They didn't put in the feeding tube today, wanted to give him one more day to hydrate and get his labs back in good order. They are looking good and procedure is scheduled for in the morning.

Honestly, I am scared of the tube - scared I will do something wrong, it will become infected (he is diabetic); however, it can't be worse than what he has been through the last week with the dehydration.

We talked to a nutritionist today and she explained that she will go through exactly how much fluid he should be putting down tube and how much "formula", and it will be calculated on his weight, etc. Then if he wants to swallow by mouth he can still do that anytime he wants to (and should a couple times a day to maintain the swallowing muscles).

They did take him for his radiation treatment today.... so one more behind us on that!

He is having a procedure done tonight late, right before he goes to bed, where they put in an NG tube because to put in the feeding tube they have to get a bunch of barium in his stomach and since he can't swallow it the only way to do it is through the NG tube. They will pull NG tube out during procedure to put in feeding tube. They are going to numb him up real good and give him some good meds. These treatments are torture.

I felt guilty leaving, but he sent me home to tend to the animals. I hate cancer.

feeding tube.
my boyfriend just got his tube placed today, almost no though cause tests werent looking right. But i guess they must have hydrated him enough that everything looked ok later and they did it. Nutritionist in the morning.

pk

kimmygarland said:

Today's News
Every day is a new day with this d&mn cancer, isn't it? I feel so bad for my husband - I so wish I could take this away. But I can't... and I need to realize there is only so much I can do. It is so hard.

They didn't put in the feeding tube today, wanted to give him one more day to hydrate and get his labs back in good order. They are looking good and procedure is scheduled for in the morning.

Honestly, I am scared of the tube - scared I will do something wrong, it will become infected (he is diabetic); however, it can't be worse than what he has been through the last week with the dehydration.

We talked to a nutritionist today and she explained that she will go through exactly how much fluid he should be putting down tube and how much "formula", and it will be calculated on his weight, etc. Then if he wants to swallow by mouth he can still do that anytime he wants to (and should a couple times a day to maintain the swallowing muscles).

They did take him for his radiation treatment today.... so one more behind us on that!

He is having a procedure done tonight late, right before he goes to bed, where they put in an NG tube because to put in the feeding tube they have to get a bunch of barium in his stomach and since he can't swallow it the only way to do it is through the NG tube. They will pull NG tube out during procedure to put in feeding tube. They are going to numb him up real good and give him some good meds. These treatments are torture.

I felt guilty leaving, but he sent me home to tend to the animals. I hate cancer.

kimmyg
Don't be afraid of the tube. It will be his life saver for a few of these horrible weeks. My husband was diagnosed with diabetes the same day he was diagnosed with cancer - nice, huh! He does not have to take any meds at this point because his blood sugar numbers are ok. Everything went just fine. Obviously during this treatment and for a long time afterwards they won't be following the diabetic diet very well. PK

kimmygarland

pk said:

kimmyg
Don't be afraid of the tube. It will be his life saver for a few of these horrible weeks. My husband was diagnosed with diabetes the same day he was diagnosed with cancer - nice, huh! He does not have to take any meds at this point because his blood sugar numbers are ok. Everything went just fine. Obviously during this treatment and for a long time afterwards they won't be following the diabetic diet very well. PK

No Peg Today - Tomorrow and Frustration
No peg placed today. He had a fever this morning, plus when they tried to get the NG tube in last night (had to be done as part of peg placement procedure) it wouldn't go down, so he will have to have the peg placed surgically. They said it is about a 15 min procedure - and not to be worried. yeah, right. He has had no fever this afternoon or evening, so they are planning to place the peg in the morning.

My husband has always been the most jovial, personable, get along with everyone, make friends with everyone type of guy and the last few days he has become this person (most of the time) that I do not know. I think it is the pain medicine they are giving him??? I dont' know. It's just so awful. I know he feels horrible and is probably scared to death, but all I get from him is anger.

Our son came in today and will be here until Sunday (he's in college), so I was able to come home from hospital this afternoon and have had a few hours of peace. Don't know if it's helped or not.

I think if they don't do the peg in the morning my husband will say FORGET IT, they can hydrate me through my port and feed me TPN. He is that upset with all the bureaucracy at the hospital, plus the anger. It's just all so surreal.

I don't know how to help him and it is so frustrating. I am just going to try and keep my mouth shut and do what I can for him. This is a horrible time, and I know from reading here that it is temporary and will pass, but right now it's pretty overwhelming.

Thanks for listening.

atuck

kimmygarland said:

UPDATE
WOW - it seems like a hundred years since I made this thread. We have completed six weeks of induction chemo and now 4 weeks of radiation - 2 weeks of chemo thrown in there also. We start week 5, which is a chemo/radiation week tomorrow. Then we only have one week of radiation left! Thank God... although I know it will still be bad for a couple weeks after treatment ends, it is one more step forward in this horrible journey.

My husband is experiencing the miriad of side effects and troubles. He has the erbitux rash, but it's not bad. He has the horrible burning throat, of course (taking hydrocodone now, but we have the patches when needed). But his most annoying side effect at the moment is the huge amount of mucous and the coughing and gagging that is causing. We have a prescription rinse (acetylcysteine) that we mix with soda that he gargles with, but I can't tell that it's doing any good. Any SUGGESTIONS?

His spirits are low, and I am trying to shore him up but it is not easy. He sleeps a lot and I hope that is ok. He does not have a peg tube (his stupid decision, I tried to talk him into getting it) and I spend a lot of time nagging about getting fluids in. At this point he is getting in 60+ oz water plus two 900 cal shakes a day. Docs tell us he is doing ok with that. Hopefully he will be able to continue getting it in. That is a HUGE concern with me.

I could go on for days about all this, but you all know what we are going through. I have a problem getting all the rinses and medicines down him (he has magic mouthwash, rinse for mouth sores, rinse for thrush, regular pills, pain pills, flouride trays, and on and on...) and feel guilty about nagging him but even more guilty when we don't get it all in.

Another question - regarding the mucous - anybody use a HUMIDIFIER for it?? I wonder if that would help?

This site has been an invaluable resource and I have learned so much. Had it not been for this site I would not have known to expect a lot of this stuff. Docs try to tell us some stuff but I think they don't want to scare us.

first post
It's been a while since I was in the condition your husband's currently, (almost 15 years) but I rember this problem all too well. I used to gargle with mineral water (the H2O brand), because it seemed to break up the thick saliva better than anything else. Also, I could taste it just a little, and you also lose that ability to taste so quickly. I was still unable to swallow because of pain and swelling, but I also had a PEG tube at the time. The better his hydration is, the better the saliva/mucous situation will get.


The humidifier might help, but hydration from the inside (water!) is so much more important.

Regarding his spirits, he'll be low sometimes, its ok. Its a hard road. Rest is good, it helps our bodies heal. And, it gives you break.

atuck

kimmygarland said:

No Peg Today - Tomorrow and Frustration
No peg placed today. He had a fever this morning, plus when they tried to get the NG tube in last night (had to be done as part of peg placement procedure) it wouldn't go down, so he will have to have the peg placed surgically. They said it is about a 15 min procedure - and not to be worried. yeah, right. He has had no fever this afternoon or evening, so they are planning to place the peg in the morning.

My husband has always been the most jovial, personable, get along with everyone, make friends with everyone type of guy and the last few days he has become this person (most of the time) that I do not know. I think it is the pain medicine they are giving him??? I dont' know. It's just so awful. I know he feels horrible and is probably scared to death, but all I get from him is anger.

Our son came in today and will be here until Sunday (he's in college), so I was able to come home from hospital this afternoon and have had a few hours of peace. Don't know if it's helped or not.

I think if they don't do the peg in the morning my husband will say FORGET IT, they can hydrate me through my port and feed me TPN. He is that upset with all the bureaucracy at the hospital, plus the anger. It's just all so surreal.

I don't know how to help him and it is so frustrating. I am just going to try and keep my mouth shut and do what I can for him. This is a horrible time, and I know from reading here that it is temporary and will pass, but right now it's pretty overwhelming.

Thanks for listening.

Kim G
Anger might just be the only control he's got over this whole situation. I had my PEG placed surgically, I wanted nothing to do with it, but it saved my life. You can only tolerate TPN so long, and the longer the stomach goes without food, the longer it takes to start it up again.

The bureaucracy sucks! Tell him not to waste his energy on it. He needs to focus on himself, and know that it will happen when it's meant to.

I can't imagine being on your end of the situation. I was 18 when I was diagnosed, and it sucked. But now, as a wife and a mother, all of these years later, I cant imagine being the person who would do anything to help, but can't.

Just be with him. Pray. Love.

atuck

kimmygarland said:

No Peg Today - Tomorrow and Frustration
No peg placed today. He had a fever this morning, plus when they tried to get the NG tube in last night (had to be done as part of peg placement procedure) it wouldn't go down, so he will have to have the peg placed surgically. They said it is about a 15 min procedure - and not to be worried. yeah, right. He has had no fever this afternoon or evening, so they are planning to place the peg in the morning.

My husband has always been the most jovial, personable, get along with everyone, make friends with everyone type of guy and the last few days he has become this person (most of the time) that I do not know. I think it is the pain medicine they are giving him??? I dont' know. It's just so awful. I know he feels horrible and is probably scared to death, but all I get from him is anger.

Our son came in today and will be here until Sunday (he's in college), so I was able to come home from hospital this afternoon and have had a few hours of peace. Don't know if it's helped or not.

I think if they don't do the peg in the morning my husband will say FORGET IT, they can hydrate me through my port and feed me TPN. He is that upset with all the bureaucracy at the hospital, plus the anger. It's just all so surreal.

I don't know how to help him and it is so frustrating. I am just going to try and keep my mouth shut and do what I can for him. This is a horrible time, and I know from reading here that it is temporary and will pass, but right now it's pretty overwhelming.

Thanks for listening.

Kim G
Anger might just be the only control he's got over this whole situation. I had my PEG placed surgically, I wanted nothing to do with it, but it saved my life. You can only tolerate TPN so long, and the longer the stomach goes without food, the longer it takes to start it up again.

The bureaucracy sucks! Tell him not to waste his energy on it. He needs to focus on himself, and know that it will happen when it's meant to.

I can't imagine being on your end of the situation. I was 18 when I was diagnosed, and it sucked. But now, as a wife and a mother, all of these years later, I cant imagine being the person who would do anything to help, but can't.

Just be with him. Pray. Love.

atuck

kimmygarland said:

No Peg Today - Tomorrow and Frustration
No peg placed today. He had a fever this morning, plus when they tried to get the NG tube in last night (had to be done as part of peg placement procedure) it wouldn't go down, so he will have to have the peg placed surgically. They said it is about a 15 min procedure - and not to be worried. yeah, right. He has had no fever this afternoon or evening, so they are planning to place the peg in the morning.

My husband has always been the most jovial, personable, get along with everyone, make friends with everyone type of guy and the last few days he has become this person (most of the time) that I do not know. I think it is the pain medicine they are giving him??? I dont' know. It's just so awful. I know he feels horrible and is probably scared to death, but all I get from him is anger.

Our son came in today and will be here until Sunday (he's in college), so I was able to come home from hospital this afternoon and have had a few hours of peace. Don't know if it's helped or not.

I think if they don't do the peg in the morning my husband will say FORGET IT, they can hydrate me through my port and feed me TPN. He is that upset with all the bureaucracy at the hospital, plus the anger. It's just all so surreal.

I don't know how to help him and it is so frustrating. I am just going to try and keep my mouth shut and do what I can for him. This is a horrible time, and I know from reading here that it is temporary and will pass, but right now it's pretty overwhelming.

Thanks for listening.

Kim G
Anger might just be the only control he's got over this whole situation. I had my PEG placed surgically, I wanted nothing to do with it, but it saved my life. You can only tolerate TPN so long, and the longer the stomach goes without food, the longer it takes to start it up again.

The bureaucracy sucks! Tell him not to waste his energy on it. He needs to focus on himself, and know that it will happen when it's meant to.

I can't imagine being on your end of the situation. I was 18 when I was diagnosed, and it sucked. But now, as a wife and a mother, all of these years later, I cant imagine being the person who would do anything to help, but can't.

Just be with him. Pray. Love.