CancerCompass message board discussion started by Donnamswa on 4/24/2008 http://www.cancercompass.com/message-board/message/all,23389,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello,My Husband is 2 weeks into treatment has had one round of Chemo and 13 rounds of radiation. He is having a lot of trouble with Nausea is will not do the wound care swishes or exercises. He has lost 10 lbs already and has been had to be hydrated due to dehydration. He will not do the neck and jaw exercises or even put the radiation gel on. I am so frustrated and we are fighting all the time. He just lays around all time and sleeps. He did get a peg yesterday. And ate well tonight but still will not drink! I ask him if I could put some water in his peg and of course the answer is no. They called to have him hydrated again tomorrow, so that should help.  Has anyone gone through anything like this or perhaps any advice from some one on the other end? I am very conerned for his recovery.Thank you so muchDonna Donnamswa Thu, 24 Apr 2008 00:00:00 GMT Donna,Yesterday was my 2 mos. anniversary of completing treatment for SCC of the left tonsil. The road was uphill all the way and the fight was very tough for me as it is w/ all of us going through it. It was also tough for my wife. Us patients can get pretty nasty when we are hurting and questioning if it is all worth it. Swallowing razor blades, throwing up, and just feeling like crap really makes us lash out and makes us want to quit. But here I am, just 2mos. later and I feel so darn good. My taste buds are coming back, my sore throat is gone, and my appreciation for life is so great now that I ALMOST ( ALMOST) wonder if it all wasn't worth it just to get me to where I love life like I never have in the past. I promise you and your husband that if he just accepts what needs to be done and does it no matter how tough or hard, it will be worth it in the end. I promise. Many others on this board will tell you the exact same thing. The alternative is a slow and painful eventual death. Why go that direction when there is a pot of gold at the end of the rainbow? For me, I jumped in w/ both feet because I didn't want to die for a variety of reasons, and your husband has to find those reasons for himself. Then fight on.I would be very glad to comunicate w/ you guys one on one anytime. I've been there, I've done it. It's worth the fight. As a matter of fact, I just played golf today. How beautiful it was to be able to do that.Don't you get discouraged by his reactions, and don't fight w/ him. Just point out what all life has to offer and how good it will be when cured. Also, find time for yourself and take care of you too.I'm sure he is no coward nor quiter. He just needs to pull the strength from inside to get through it. For me, prayer and future plans pulled me through day to day. He and you can do it. There is no choice.Good luck and God bless.Rick rick51 Thu, 24 Apr 2008 00:00:00 GMT  On 4/24/2008 Donnamswa wrote:Hello,My Husband is 2 weeks into treatment has had one round of Chemo and 13 rounds of radiation. He is having a lot of trouble with Nausea is will not do the wound care swishes or exercises. He has lost 10 lbs already and has been had to be hydrated due to dehydration. He will not do the neck and jaw exercises or even put the radiation gel on. I am so frustrated and we are fighting all the time. He just lays around all time and sleeps. He did get a peg yesterday. And ate well tonight but still will not drink! I ask him if I could put some water in his peg and of course the answer is no. They called to have him hydrated again tomorrow, so that should help.  Has anyone gone through anything like this or perhaps any advice from some one on the other end? I am very conerned for his recovery.Thank you so muchDonnaDonna,Rick is right on que!!! He sounds depressed and may need a mood elevator/anti- depressant medication to give him the strength to move forward into treatment. I do have one more thought---what pain med is he on? I have been a  nurse for 25 years and sometimes people react to drugs by being difficult, confused, ect.--all adverse reactions. Talk with your docs.  DeniseB DeniseB Fri, 25 Apr 2008 00:00:00 GMT  On 4/24/2008 rick51 wrote:Donna,Yesterday was my 2 mos. anniversary of completing treatment for SCC of the left tonsil. The road was uphill all the way and the fight was very tough for me as it is w/ all of us going through it. It was also tough for my wife. Us patients can get pretty nasty when we are hurting and questioning if it is all worth it. Swallowing razor blades, throwing up, and just feeling like crap really makes us lash out and makes us want to quit. But here I am, just 2mos. later and I feel so darn good. My taste buds are coming back, my sore throat is gone, and my appreciation for life is so great now that I ALMOST ( ALMOST) wonder if it all wasn't worth it just to get me to where I love life like I never have in the past. I promise you and your husband that if he just accepts what needs to be done and does it no matter how tough or hard, it will be worth it in the end. I promise. Many others on this board will tell you the exact same thing. The alternative is a slow and painful eventual death. Why go that direction when there is a pot of gold at the end of the rainbow? For me, I jumped in w/ both feet because I didn't want to die for a variety of reasons, and your husband has to find those reasons for himself. Then fight on.I would be very glad to comunicate w/ you guys one on one anytime. I've been there, I've done it. It's worth the fight. As a matter of fact, I just played golf today. How beautiful it was to be able to do that.Don't you get discouraged by his reactions, and don't fight w/ him. Just point out what all life has to offer and how good it will be when cured. Also, find time for yourself and take care of you too.I'm sure he is no coward nor quiter. He just needs to pull the strength from inside to get through it. For me, prayer and future plans pulled me through day to day. He and you can do it. There is no choice.Good luck and God bless.RickThank you for the encouraging words. I think he feels like he is doing the best he can, but it is so hard knowing he SHOULD be doing so much more. He came home from the hospital yesterday and didn't have one thing to drink, just his feed and a popcycle that to me seems crazy! He is on a fentynal patch, oxycodone, zofran, and ativan at night. The siliva is really bad and he has such a weak stomach anyway. He will seems ok one minute gettting me coffee then the next huffin and puffin and won't tell me what is wrong when I ask he gets so angry. Where can I get one of the suction things I hear about in this site? What is the name if it? I think it could help. I just want to help and I feel so helpless. I need to clean his peg site and he won't let me, this behavior is what is so upsetting. I have talked to his Dr about antidepressants and he said he will ask my husband about it today. The thing is he will behave as if he is fine to the Dr. When I share things I learn from this site he really doesn't want to hear about it. Any way thank you so much for the advice I feel like atleast there are people that understandIn Faith in HimDonna Donnamswa Fri, 25 Apr 2008 00:00:00 GMT Hi Donna,I may be wrong but it sounds as though your husband may also be feeling helpless and out of control. This is a very common thing when going through cancer. When you make suggestions he may be seeing it as you're taking even more control from him so he rebels and does the opposite. The problem is that he is hurting himself in the process and causing you more anguish. Here's a suggestion: Sit him down and tell him that you understand his helplessness and lack of control. Let him know that you feel the same way. Try to impress on him the fact that you are on his side. You'll have to make him realize that yes he is going through a terrible thing. That it is extremely frightening, painful, uncomfortable in ways you can't imagine, and that it will get worse before it gets better, BUT IT WILL GET BETTER. How fast that happens and how uncomfortable it is for him is up to him. If he does all of the things that he is supposed to it will be less painful with less side effects and be over quicker. If he doesn't it will be more painful with more side effects and last longer. Tell him these things and let the choice be his. Let him know that you will support him. I don't know if this will work but I can't see anyone given the choice to make things better with support choosing to make things worse.Good Luck!Joe  Defjoeb Fri, 25 Apr 2008 00:00:00 GMT All the info and advice I've read is is good and right on. I couldn't add a thing! As a survivor (my one year anniv from treatments was yesterday) I can only emphasize that it IS worth it all and he will perservere. If only he could think and believe that, he may be able to start helping himself. I feel for you-how hard this must be. He's not alone and neither are you. Best of luck to the both of you that things will just get better and better, in all ways. Gayle PS-is there any support groups near you and would he go? gayleann Fri, 25 Apr 2008 00:00:00 GMT  On 4/25/2008 gayleann wrote:All the info and advice I've read is is good and right on. I couldn't add a thing! As a survivor (my one year anniv from treatments was yesterday) I can only emphasize that it IS worth it all and he will perservere. If only he could think and believe that, he may be able to start helping himself. I feel for you-how hard this must be. He's not alone and neither are you. Best of luck to the both of you that things will just get better and better, in all ways. Gayle PS-is there any support groups near you and would he go?Oh no he will not hear of it..when we are at the Doc he seems like he is doind great! And he tells them he is doing great. They have to know better because of his weight loss and dehydration I would like. ThanksDonna Donnamswa Fri, 25 Apr 2008 00:00:00 GMT  On 4/24/2008 Donnamswa wrote:Hello,My Husband is 2 weeks into treatment has had one round of Chemo and 13 rounds of radiation. He is having a lot of trouble with Nausea is will not do the wound care swishes or exercises. He has lost 10 lbs already and has been had to be hydrated due to dehydration. He will not do the neck and jaw exercises or even put the radiation gel on. I am so frustrated and we are fighting all the time. He just lays around all time and sleeps. He did get a peg yesterday. And ate well tonight but still will not drink! I ask him if I could put some water in his peg and of course the answer is no. They called to have him hydrated again tomorrow, so that should help.  Has anyone gone through anything like this or perhaps any advice from some one on the other end? I am very conerned for his recovery.Thank you so muchDonna  D1211 Fri, 25 Apr 2008 00:00:00 GMT Hi Donna. I am just over 6 months out of treatment for tonsillar cancer, and I can only echo what everyone else has already said. I was a tremendous pain in the butt for my wife while I was undergoing treatment, but she stood her ground and drilled it into me that I needed to do all those things. See if you can get your husband to read some of the posts here, also see if you can talk to the doctors without him there and explain what is happening, if they already havent guessed.I think right now, he is maybe a little scared and feels like his life is out of control, I know I was like that for awhile, biut once the doctor told me that the treatment was starting to work and my cancer was getting smaller, my attitude improved. I still wasnt the perfect patient ( ask my wife), but I will say, like Rick, that the experience made me a better person and more appreciative of the things around me. Tell your husband that you and the doctors are on HIS side, but he needs to do his part, too. My radiation oncologist's assistant told us that the patients that do what they are told to do recover faster and with fewer problems. Everyone wants to see him beat the cancer, but he needs to let you all help him.Best wishes, Mikeps, My wife was reading this over my shoulder. She (laughingly) said if all else fails, thump him up the side of the head and knock some sense into him, micromisterphone Fri, 25 Apr 2008 00:00:00 GMT  Hi Donna, My husband finished treatment 3 weeks ago. He was difficult, very sad and negative. I finally asked him: do you want to live with the cloud of cancer over you or do you want to live carefree?  This is not the end, it's just a detour in the course of your life. Marriage is about love, respect, and support. He needs to trust that you love him enough to be the for him, no matter what. He needs to be reminded that when he has no strength, he can rely on you, physically and emotionally. Maybe it'll help if together you make some plans, like for household chores, or finances. AS boring as it may sound, it might bring a sense of reality that time has not stopped. Be persistent! Zeebra Fri, 25 Apr 2008 00:00:00 GMT Hi Donna   My heart goes out to you.  Myhusband was diagnosed in August last year and completed treatment inDecember.  He too did not always follow his doctor's advice, forexample after the first round of chemo put him in the hospital, he didnot return to tratment for 12 days.  I was terrified he would diefrom a cureable cancer.  What I learned:  IT IS HISDISEASE.  I could love him and support him and try to empathize,but I could not make him do anything.  He needs your love andsupport more than ever now so don't undermine that. These poor guys barely have time to process the fact that theyhave cancer before they are rushed into treatment.  It has to beterrifying.  And the PEG thing is such a shock to their sense ofself - an invasion of their bodies.  Sometimes the anger theyexpress at us is really fear coming out sideways. You are just theconvenient target, try not to take it to heart.  Unusualcircumstances cause unusual behavior.  Easier said then done Iknow.  It helped me to visualize myself as a duck and just let thenasty words wash off my back.Take care of yourself or you can be of no use to him.  Biteyour tongue more than you think you can because the arguments areuseless. State your suggestion then let it go. You are in for a longrough road BUT it will end and he will be well Karenok  karenok Sat, 26 Apr 2008 00:00:00 GMT Let him know you will stand by him and help him all you can but at the end of the day, he will need to step up to the plate.  And let him know if he DOESN'T do his part by keeping up with fluids, swallowing, cleaning the peg tube, etc. that YOU will step in because this is a cureable cancer and you can have a better outcome after treatment if you take care of yourself now. Let him know you need to work together as a team, because he's not the only one dealing with this cancer, you are too. It may just be the meds making him difficult to deal with, but if it's not and he's just angry at the fact he has this to deal with, tell him he needs to get angry at the cancer and beat it...and not just beat it....beat it well.  Tell him he needs to listen to others that have been there before and are now cancer free and take advice from them.and in case someone didn't respond to your other post, i think the machine is called an asperator (spelling?) Ask the hospital where your husband is being treated.  Sometimes they will supply them to you.  My husband never used one, he just used a large dixie cup and paper towels for spitting up the mucus.And tell him to keep up with those fluids.  Doesn't always have to be water, in fact they told us it's better to also have juice or ensure.  There's also protein water (i think Kelloggs makes it), that would be good to use also.- Amy  Amynmiami Sat, 26 Apr 2008 00:00:00 GMT  On 4/26/2008 Amynmiami wrote:Let him know you will stand by him and help him all you can but at the end of the day, he will need to step up to the plate.  And let him know if he DOESN'T do his part by keeping up with fluids, swallowing, cleaning the peg tube, etc. that YOU will step in because this is a cureable cancer and you can have a better outcome after treatment if you take care of yourself now. Let him know you need to work together as a team, because he's not the only one dealing with this cancer, you are too. It may just be the meds making him difficult to deal with, but if it's not and he's just angry at the fact he has this to deal with, tell him he needs to get angry at the cancer and beat it...and not just beat it....beat it well.  Tell him he needs to listen to others that have been there before and are now cancer free and take advice from them.and in case someone didn't respond to your other post, i think the machine is called an asperator (spelling?) Ask the hospital where your husband is being treated.  Sometimes they will supply them to you.  My husband never used one, he just used a large dixie cup and paper towels for spitting up the mucus.And tell him to keep up with those fluids.  Doesn't always have to be water, in fact they told us it's better to also have juice or ensure.  There's also protein water (i think Kelloggs makes it), that would be good to use also.- Amy  Thank you all the adivce is helpful, I am very sensitive and really don't have much fight in me so this is all such a stretch. The Dr tried to have a heart to heart with him yesterday telling him all needs to do and suggested an anti depressant, my hysband refused. The Dr told him his cure rate is 90 percent and that there are 70yr old ladies with 20 percent odds that fight the fight harder then him. Dont know if it did much good he seemed more angry when we got home thinking I was tattling to the dr. Any way I wil try all the advice and keep up the good fightThanks again to all of you! This is a new life line!!Donna Donnamswa Sat, 26 Apr 2008 00:00:00 GMT Donna,You're doing everything you can. Don't feel guilty, at the end of the day it is his decision on how he wants to react and respond. Sounds like he is angry that this has happened to him and he is lashing out. We all get that way from time to time. The "life isn't fair" mentality.But, as the caregiver you can only do so much. My wife would hug me, hold me, and kick me in the butt depending on what I needed at the time.He's got to understand the situation then make up his own mind. There is only so much you can do, so please explain that to him and let him know he is a grown man with his own mind and you hope he'll make the right choice but you won't argue w/ him about it. If he won't be open to all the suggestions from his docs. then that is his choice. Not for me, I did EVERYTHING they said. I wasn't to proud. I took the pain pills, the anti-anxiety meds, the anti-depressants, whatever. And believe me, I'm a retired race car driver that was as tough as nails with crashes over 200mph thinking nothing could hurt me. I learned very fast that I wanted to live and the stubborn was knocked right out of me.Good luck and God bless.Rick rick51 Mon, 28 Apr 2008 00:00:00 GMT