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Husband Just Diagnosed - UPDATE

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My husband was just diagnosed with hypopharyngeal cancer with spread to lymph nodes. I am so scared, and he is very stoic. He will have 6 treatments (1 per week) of chemo, and then several weeks of daily radiation with a few more chemos thrown in for good measure. The doc says their protocol has 80-85% cure rate, which is encouraging, but says the treatment is rough. The information and number of doctors we have had thrown at us is overwhelming. Monday first visit with chemo oncologist, then pending appts with radiation doctor, special dentist, he'll have to have chemo port put in, they want to put in a feeding tube "just in case" it's needed, the list goes on and on.

He is very positive and I am the one who seems overwhelmed! Of course, I am not indicating this to him... stiff upper lip and all.

I will be here for support I am sure, I have already read so much info that has been helpful.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Kimmy

Hang in there your husband is going to need you there all the way; I could not have done it with out my Wife by my side. I will keep your both in my Prayers

harberval
Posts: 4
Joined: Aug 2009

mines just been diagnosed too, tumour left side of neck and left side of tongue , surgery 1st september to remove tumour and as many lymph nodes as poss then 7 weeks radiotherapy and one chemo weekly , gonna be along haul but they have asaid its a cure so Im hanging onto thsoe words
im here if you want to chat
val

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

I did 6 weeks of chemo once a week with Taxol and carboplatin and erbitux then 7 weeks of radiation with doubles on friday plus Cisplatin chemo daily on weeks 1,4 and 7 then i had a radical neck dissection .

Its 11 months since radiation ended and 9 months since the neck dissection.
I feel great now . Boy did last year suck.. It is hard but i feel worth it.
Get a peg tube and a port and then just get as much food and water in you as possible. The more food and water you get in you the better you feel..

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

I know how you feel, my husband was dx a year ago with head and neck cancer stage 4, we have been through several chemo treatments and start a new trial study on Monday if his labs are good, he did 33 treatments of radiation, that was rough, be prepare, it is so rough, I can give you alot of tips to make it a little better, I can tell you what to expect if you like, it is good to know what to expect , we did not , and it is great find a really good support, Jack has been going through this a year now, if I can help and share any advise let me know

Patty

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Thank you for the words of wisdom. Our first chemo was Friday (carbo/taxol combo) and we have five more. Then 5 weeks of radiation/chemo combo. Fun stuff.

My husband is doing ok. His main problem so far has been joint pain from the Neupogen shots (for which blood cell count building) he is taking daily. He is taking Tylenol during the day and pain pill at night to sleep.

We can get through this weekly chemo part ok, the part that I am really scared and worried about is when we get to daily radiation and chemo. But I am trying to take it one day at a time.

harberval
Posts: 4
Joined: Aug 2009

husband diagnosed two weeks ago with cancer of left side oftongue they say minimal, which is good, but 3cm tumour back of throat and into lymph nodes ,(a lump in neck came up two days after flu in July )Doc said poss glands prob, then waited two weeks for ENT , then anaother two weeks for result and so on ,) been so many appointments! all takse so long , Just had pre op assessment today and 1st september in for radical left neck dissection , then 7 weeks of daily radiotherapy and one chemo weekly . I keep clinging onto the words of the surgeon who told us , it will be a cure at the end of thsi ,
He gave up smoking same day as diagnosed ,eating sweets madly /chewing gum all day , but Im proud of him,....but Ive told him if he dosent soon buy sweets I dont like Im off1cos the huge bowls of goodies around our home are a distraction to an overweight wife ..........and we will end up diabetixs at this rate! we both have wicked sense of humour and that will get us through the hard times ahaed im sure we are going to need it .....
its great to hear other peoples stories of survival and the tips of what to expect , and Ive stocked up on the jellies . rice pud and milk shake ready ......at least their things I dont like !
I wish everyone on here all the very best and will look in from time to time ,its good to know we are not alaone .
As I say theres 3 of us in this marriage now, him, me and cancer , and Ill fight her for him all the way .
val
.

pk's picture
pk
Posts: 192
Joined: Aug 2009

My husband was diagnosed at the same time yours was. He has now completed 4 weeks of radiation with 14 more rads to go. He also has an erbitux injection once a week. Protocol for his oncologists was to put the feeding tube in prior to the start of treatment and we are so glad. He's a big guy so losing weight is a little less dangerous for him and it does come off fast. He drinks water but is not interested in eating food at all. He sleeps alot and is very fatigued, but continues to try and be upbeat and cheerful. This afternoon he popped a vicadin and walked to our local theater to see a movie. I am proud of his efforts. I'm sure you know that they need alot of support and help to get through all of this, and the toughest part I think will be that when the treatment ends the side effects will linger for quite awhile. Keep your chin up and treat yourself to time with your girlfriends when you can get away.
PK

newbride
Posts: 142
Joined: Jul 2009

PK
Is your husband having any side effects from the Erbitux? Mine is having a heck of a time with the rash on his face and conjuctivitis in his eyes. Both are side effects known to the drug -- I looked them up.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Yup. He has quite a rash on his face and chest as well as eye gunk. His oncologist told us that there is not a scientific study done on the rash side effect, but patients who get it seem to have better outcomes with the treatment than those who don't.

Kwillis
Posts: 5
Joined: Sep 2009

My husband was diagnosed with throat cancer 6/30/09 (our daughters birthday). Another helpful blog site is "Blog for the Cure." Cancer patients and caregivers share their stories, fears, questions, etc. (We are simply listed as "K")

My husband is in the hospital now from chemo #2 side effects. HIs last radiation is today and his last chemo is in two weeks.

You are at a VERY overwhelming stage. Don't be afraid to get more than one opinion. We went to the Cleveland Clinic for ours. We actually used their information to determine our course of treatment at a closer hospital that Cleveland felt comfortable with.

We did the feeding tube while the "white blood cell" count was normal and Mark was healthy "just in case." You will use the feeding tube. It's not as bad as it sounds. My worst moment was when I saw our 12 year old son helping his Dad with the tube. A father son moment that one NEVER expects to see and should never have to experience. I had to leave the room and gain composure. They were both calm and it wasn't a big deal...I was the one wth the problem. I was just used to seeing them share moments over homework, on a golf course, at a soccer game. Anyway...you can do it!!! You will do it and you WILL get thru it.

Anxious to getting to the "other side,"
Kathy

pk's picture
pk
Posts: 192
Joined: Aug 2009

Kathy,

Getting through it is an experience of a lifetime. We just came from my husband's 21st rad and met with the oncologist. The Dr. told us that Bob was managing his rad and chemo better than most at this stage. He is tough and has very few breakdowns. Your son is a special guy - kids do so much more than we ever expect from them-they do have such gentle hearts. I agree, thank goodness for the feeding tube. It is NOT as bad as it sounds.
Take good care. Have a great weekend. Don't forget to hang out with your girlfriends and have a gin and tonic if you are so inclined.
Phyllis

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Looks like there are a lot of us here just getting started. My husband had weekly Chemo #3 on Monday. We have three more. He is doing ok.... has a couple days of flu-like symptoms per week. The rest of the time he says he just "doesn't have any gumption", in his words. The Neupogen shots (he takes 3 per week) are making his bones ache, that has really been his worst complaint to this point.

Yesterday his hair started falling out. I don't know why this bothers me, as he is practically bald anyway - but I have a feeling it will be difficult for me emotionally. (Silly, I know) He says at this point that's minor to him.

He does not have the feeding tube yet. At the beginning of all this they said he would get it, but I'm not sure when they actually put it in. I need to ask next week. It may be in the 2-3 weeks between when the weekly chemos end and we start the lovely chemo/radiation combo.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Had Chemo treatment #4 today. He has been doing so well (his bloodwork is good, kidneys are doing well - he is diabetic, etc.) they added a little more to his dosage today. Hope we don't have more side effects.

A man came in to the chemo office today with very bad burns on his neck. It was heartbreaking and I know it scared the kr*p out of my husband. Actually, he thought the man had, had surgery.... but I knew what it was. I didn't have the heart to tell him. Hoping we don't have anything that severe.

This is quite a journey, and still very scary. I don't worry so much about the outcome - as we are being told he has very high rate (80-90% chance) of cure. It's the dang process to get there that is overwhelming on some days. But today was a good day. One day at a time is what I have to keep reminding myself.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Kimmygarland

The Journey is something else. My husband has 11 radiation treatments left and does not have burns on the side of his neck yet, but I know what you mean when you see what this can do to the skin. Maybe both of them will get lucky and not have such an adverse reaction. I don't worry much anymore either. I think we get too busy caregiving and as I said in earlier posts, my girlfriends have been my lifeline to normalcy.

I try to tell myself that everyday is a good day, because it's one day closer to the end of treatment. Keep smiling, kimmygarland!!!
PK

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Hi thats an impressive cure rate, 80-90 percent. To use it comparitively can you tell us more about the primary site and staging of your husband. Did he have lymph node involvement?

Kwillis
Posts: 5
Joined: Sep 2009

Thanks Phyllis. You hang in there also! I haven't had a lot of time for girlfriends lately. Mark is so sick right now. I make time for a 30 minute walk (I-Pod full volume) and red wine. I would really be in trouble without my walk. I walk where no one can see and have an occasional ugly face cry before punching my arms in the air a few times!

amber65
Posts: 2
Joined: Sep 2009

listen to the doctors, i found reseach a good thing, but you may be too overwhelmed at the moment. it gets easier eventually. dont hide your feelings, my husband hid his when i was diagnosed and i felt very alone. talk, talk and more talk. just hold each other and you will find your own way of sharing this and coming out the other side.
lots of love x

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Very good advice amber65, I was so preoccupied with my cancer I did not realized how bad my wife was suffering too. You are so very right you need to keep talking with each other, it gives both of you strength to keep fighting.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

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.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

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's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

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's picture
delnative
Posts: 452
Joined: Aug 2009

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's picture
kimmygarland
Posts: 313
Joined: Aug 2009

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's picture
pk
Posts: 192
Joined: Aug 2009

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's picture
cwcad
Posts: 117
Joined: Nov 2009

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's picture
cwcad
Posts: 117
Joined: Nov 2009

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's picture
cwcad
Posts: 117
Joined: Nov 2009

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's picture
cwcad
Posts: 117
Joined: Nov 2009

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's picture
kimmygarland
Posts: 313
Joined: Aug 2009

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's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

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's picture
pk
Posts: 192
Joined: Aug 2009

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's picture
kimmygarland
Posts: 313
Joined: Aug 2009

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
Posts: 5
Joined: Oct 2009

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
Posts: 5
Joined: Oct 2009

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
Posts: 5
Joined: Oct 2009

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
Posts: 5
Joined: Oct 2009

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.

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