scared

granmudder
granmudder Member Posts: 41 Member

Im scared my husband is finished all treatments 35 rads 3 cysplaitin... .he was diagnosed with stage 4a scc hpv 16. ... was misdiagnosed for a year found it by having surgery to remove what they were certain was a cyst... Dr apologized after told me he was so sorry He had made a mistake..We will know by end of december after his petscan.. im pretty positive it is gone.. I have been supportive the whole way and will continue to be but i long for our old life back it makes me feel so selfish .. i know this can take a long time to recover ive been reading lots of posts here looks like anywhere from months to years.. i dont sleep well usually get up for hours and just think and wonder.. He has lost a lot of weight and lots of muscle Ive never seen him weak so it is hard to take.. he is tired all the time which is expected .. he usually dry heaves but last night was vomiting .. he refused a peg and does try to get at least a couple of shakes down a day.. i try to make them as high calorie high protein as possible .. has the occassional bowl of soup ( which is what made him so violently ill yesterday) he is trying really trying .we are seeing the chemo oncologist friday  they i believe are checking his blood work.... He had ran a temperature 2 weeks ago and i brought him into our local hospital.. they took bloods and said they were ok.. temp dropped i brought him back the next day to hydrate.. he gets so mad at me when i suggest he needs hydration..he still is smoking.. trying hard to quit but that scares the hell out of me..im sorry im rambeling here.... we will make it i know we will its what i keep telling myself ..

«1

Comments

  • denistd
    denistd Member Posts: 597
    Smoking

    It is truly imperitive that he quits smoking, if he continues the chances of it coming back is almost guaranteed. I know it is hard to quit, if he must smoke to the vaping, that is not smoke but has the nicotine in it, but quitting altogether is the best route.

  • jackflash22
    jackflash22 Member Posts: 524 Member
    denistd said:

    Smoking

    It is truly imperitive that he quits smoking, if he continues the chances of it coming back is almost guaranteed. I know it is hard to quit, if he must smoke to the vaping, that is not smoke but has the nicotine in it, but quitting altogether is the best route.

    I feel the same helplessness

    I feel the same helplessness with my partner, he has lung problems..fibrosis,swollen nodes and inflammation but he won't quit smoking and refuses treatment. He's in denial all the time. It dreadful to hear him coughing and sometimes choking. I can't understand why men can be so stubborn. He makes sure I keep my appointments but he refuses to go or walks out before he's seen because they kept him waiting to long. I hope your husband sees the sense to quit smoking I know it's hard but can be done. Good luck.

  • phrannie51
    phrannie51 Member Posts: 4,716
    It sounds to me as tho

    many of your hubby's troubles now, are the same as so many of us had at the end of treatment....As long as he's getting nutrition and hydration, it's ok that it comes in shakes, smoothies, Ensure.....whatever.  He can still take his anti-nausea meds to help with that....they aren't just for during chemo. 

    As for the smoking....and the fact that he's trying hard to quit tells me he might be very willing to try the e-cigarettes (vaping).....I quit using them, and I was hard core.  Check out some of the smoke shops in your area, they may have the ecigs or.....there may be a shop that caters to ecigs only.  He won't have to go through the withdrawls at the same time he is trying to recover from treatment.  Once he has switched to vaping, he can keep lowering the nicotine content of the "juice"....till voila.....he's either using the ecig with no nicotine or he simply quits the whole thing.

    p

  • hwt
    hwt Member Posts: 2,328 Member

    It sounds to me as tho

    many of your hubby's troubles now, are the same as so many of us had at the end of treatment....As long as he's getting nutrition and hydration, it's ok that it comes in shakes, smoothies, Ensure.....whatever.  He can still take his anti-nausea meds to help with that....they aren't just for during chemo. 

    As for the smoking....and the fact that he's trying hard to quit tells me he might be very willing to try the e-cigarettes (vaping).....I quit using them, and I was hard core.  Check out some of the smoke shops in your area, they may have the ecigs or.....there may be a shop that caters to ecigs only.  He won't have to go through the withdrawls at the same time he is trying to recover from treatment.  Once he has switched to vaping, he can keep lowering the nicotine content of the "juice"....till voila.....he's either using the ecig with no nicotine or he simply quits the whole thing.

    p

    My two cents

    Prioritize! Hydration and nutrition have to come first. Food isn't necessary as long as your husband is taking in enough Ensure, or the like, daily.  

    The decision to quit smoking has to come from your husband.  Am sure he knows and understands the consequences and is reminded by doctors and loved ones. Even though it affects everyone, it is his choice. I think he will come to terms with it but right now, likely overwhelmed with everything.  You might want to have e-cigs or gum available for him but I would encourage you to allow him to do it in his time. It sounds like he is very sensative to being told what to do right now. It has to be hard to know he continues to smoke. Maybe give the topic a rest for a couple of weeks and concentrate on getting the nutrition going in the right direction.  With any luck at all, he will have stopped on his own and there won't be a need to address smoking again. Right now, he may feel like he has lost control, that will pass as he feels better.

    God bless

  • Guzzle
    Guzzle Member Posts: 710
    hwt said:

    My two cents

    Prioritize! Hydration and nutrition have to come first. Food isn't necessary as long as your husband is taking in enough Ensure, or the like, daily.  

    The decision to quit smoking has to come from your husband.  Am sure he knows and understands the consequences and is reminded by doctors and loved ones. Even though it affects everyone, it is his choice. I think he will come to terms with it but right now, likely overwhelmed with everything.  You might want to have e-cigs or gum available for him but I would encourage you to allow him to do it in his time. It sounds like he is very sensative to being told what to do right now. It has to be hard to know he continues to smoke. Maybe give the topic a rest for a couple of weeks and concentrate on getting the nutrition going in the right direction.  With any luck at all, he will have stopped on his own and there won't be a need to address smoking again. Right now, he may feel like he has lost control, that will pass as he feels better.

    God bless

    nicotine

    tough drug to quit. To persevere through treatment is hardcore. Would pro cessation advice help? G.

  • Kritter
    Kritter Member Posts: 147
    Scared...

    I wish the best for you and your husband. But I read where you wrote * he gets so mad at me*  , just remember we get more angry at those we love as we know they will stand by us and forgive us.  I know this is very hard for you.. as I went through similar circumstances when I was the * 24/7 , well almost, her son, my husband helped me *....caregiver for my Mom-in-law who passed with colon cancer, we kept her in her home. She chose no treatment as she was stage 4 and in her 80's. Was one of the hardest things I have ever done, but I would do it again if need be. Love and understanding is a powerful thing. Good luck to you and your family. 

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome to the H&N group and sorry you need to be here. Just courious where was his tumor? Mine was just above the larynx so I had it to be removed. Stage 3 T3,N0,M0 SSC suprsglottic. no chemo or Rads needed. I also have severe bullous emphysema stage 3. I smoked for 42 years 1 1/2 pk a day. Yes it is hard to quit, but you have to want to quit. What can also help is a straw with a small peace of cotton in it to give resistance, and a cigarette filter on the end. It gives your hands something to do just as if you were smoking. Yes the E-Cigs  will help some, but it is still a foreign substance into the lungs and will cause problems. You will here if you stop smoking your lungs will rebuild themself. Well that is NOT completely true. If it is emphysema, there is no going back  and repairing it, only getting worse over time. Smoking will also increase the odds of a recurrence by a lot. Almost a guarantee.

    If he is having trouble eating and keeping it down get the meds from the DR. He might try ice chips and salteen crackers can help some. This is very hard on the lovedones and caretakers. You feel the pain he has but can't take it away. The caretaker must take care of themself before you can take care of him if you are too exhausted. This is a rough road to go down but you can beat the beast. It is life changing and you have a new normal.

    Best of luck and we will keep you in our prayers.

    Bill

  • ratface
    ratface Member Posts: 1,337 Member
    wmc said:

    Welcome to the H&N Group

    Welcome to the H&N group and sorry you need to be here. Just courious where was his tumor? Mine was just above the larynx so I had it to be removed. Stage 3 T3,N0,M0 SSC suprsglottic. no chemo or Rads needed. I also have severe bullous emphysema stage 3. I smoked for 42 years 1 1/2 pk a day. Yes it is hard to quit, but you have to want to quit. What can also help is a straw with a small peace of cotton in it to give resistance, and a cigarette filter on the end. It gives your hands something to do just as if you were smoking. Yes the E-Cigs  will help some, but it is still a foreign substance into the lungs and will cause problems. You will here if you stop smoking your lungs will rebuild themself. Well that is NOT completely true. If it is emphysema, there is no going back  and repairing it, only getting worse over time. Smoking will also increase the odds of a recurrence by a lot. Almost a guarantee.

    If he is having trouble eating and keeping it down get the meds from the DR. He might try ice chips and salteen crackers can help some. This is very hard on the lovedones and caretakers. You feel the pain he has but can't take it away. The caretaker must take care of themself before you can take care of him if you are too exhausted. This is a rough road to go down but you can beat the beast. It is life changing and you have a new normal.

    Best of luck and we will keep you in our prayers.

    Bill

    He is doing great!

    That diagnosis has a great chance for survival. A lady in my cancer group has had a very difficult time giving up the cigarettes. Hides them from her family and is feeling great guilt over this issue. Being a former smoker I can understand. For the moment lets celebate all of your collective successes. The smoking will  work itself out. Get some rest, The smoking fight is a separate battle that is 100% winnable. Not bad odds at all.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    i'm sorry you and your hubby

    i'm sorry you and your hubby are going thru this.  it is a long road sometimes but you will get there.  i understand about wanting your old life back, we (the patient) would love to have it back also.  you don't need to feel selfish, it is a NORMAL feeling.  we also understand that's its as hard on our loved ones as it is us, so don't be so hard on yourself.  as for the smoking, i have to agree with denis, it is not a question of "if" it will come back but "when" it will come back.  i quit when i was dx 8/09.  then 3/10 my nephew, who was more like my son, passed away and the firtst thing i did was get a cigarette.  i continued to smoke until the cancer came back 2/12.  i had to have a total laryngectomy and my life has changed greatly.  i pray for your husband to be able to quit and i know first hand how hard it is.  and someone mentioned guilt, well, the guilt i felt was almost as bad as the cancer.  everytime i lit up i felt guilty b/c i knew how it made my loved ones feel.  but i still could NOT quit.  try not to ride your husband, he knows he needs to quit, trust me.  and he probably feels the guilt as well.  he will quit when he is ready.  i hope that's soon but until then nobody can do anything about it or to help him.  your life will get better you just have to be patient a little longer.  you've made it through the rough part so hang on a little more.  i am keeping you and your husband in my prayers.  i look forward to seeing a post from you saying he quit smoking.  i am going to think positive for him.

    God bless you both,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    scared

    GM,

    My wife never dialed 911, but I sounded like I needed it when hacking, gaging and coughing.

    He needs to find  a way to manage hydration and nutrition, paramount!  He will feel better, guaranteed.

    Smoking, cancer didn’t stop him, but he can. 

    Scared, comes and goes.

    Old life is out of focus.

    New life is what I make it and I make it good, but different.

    Good luck,

    Matt

  • granmudder
    granmudder Member Posts: 41 Member

    It sounds to me as tho

    many of your hubby's troubles now, are the same as so many of us had at the end of treatment....As long as he's getting nutrition and hydration, it's ok that it comes in shakes, smoothies, Ensure.....whatever.  He can still take his anti-nausea meds to help with that....they aren't just for during chemo. 

    As for the smoking....and the fact that he's trying hard to quit tells me he might be very willing to try the e-cigarettes (vaping).....I quit using them, and I was hard core.  Check out some of the smoke shops in your area, they may have the ecigs or.....there may be a shop that caters to ecigs only.  He won't have to go through the withdrawls at the same time he is trying to recover from treatment.  Once he has switched to vaping, he can keep lowering the nicotine content of the "juice"....till voila.....he's either using the ecig with no nicotine or he simply quits the whole thing.

    p

    vaping

    good morning... thank you all..

    thanks for the comments ... i bought him a vaper ( with nicoteen tobacco flavored) he is using it in the car .. he has been trying very hard not to smoke around me i dont say anything  too him but i dont have to he reads most of my texts emails etc so i dont have to discuss it directly with him as i am well aware that doesnt work... my daughter quit smoking 2 years ago before her dad was diagnosed she did it to encourage him as he at that time would cough like crazy.. my son quit september 2nd  .. he too has done this in hopes that it encourages his dad.. i choose my battles with him which are mainly hydration and getting nourishment into him he is trying for certain...  we see the dr today for blood tests .. because of his weight loss im sure she may be conerned.... i am thinking to move out of the bed we share.. im a cuddler and because he is so thin it seems to hurt him when i get to close.. another sad realization.. i hope that changes back once he is well.. i also need to speak with the doc today about his acd reflux he seems to suffer with what he is calling indigestion..... the long and winding road..

     

  • wmc
    wmc Member Posts: 1,804
    You asked me about Acid reflux.....YES

    Yes, acid reflux can trigger, or help cause the throat cancer. It is known to be a cause of Esophagus cancer, and my doctors beleved it was a contributing factor to my throat cancer. Smoking was the main reason for me, but the acid reflex they feel helped it too.  I do not have HPV +. It is better or responds to treatment if it is HPV+. Another thing that can be the reason is, it just did, no reason, just being unlucky. Now the important thing is not the "Why", but how are you going to accept and deal with it. Being positive is the best way to beat this beast. Just focus on today, yesterday no longer matters. I have to have my GURD under control so it doesn't burn my throat or my prosthesis in my neck I use to speak with. 

    Your husband will get through this as well as you will. It is very hard on the caretakers and loved ones. 

    Bill

  • granmudder
    granmudder Member Posts: 41 Member
    So we saw the chemo dr ...

    So we saw the chemo dr ... blood works were very good  she said.. calcium levels high though.... im pretty certain it has to do with hydration but he refuses to listen to me she asked him if he wanted to hydrate of course he said no.. ...had a sip of soft drink between 9am  and 2 drove  both ways its close to 2 hours eachway :( ..... she noticed a spot on the back of his throat thinks its likely thrush .. started on meds for that again.. but i cant help worrying its something other than thrush i still worry a lot about the smoking ( he has cut down a lot though) . ... his concentration is off... taste buds seem to be coming back a little had a good weekend  actually managed to eat some solid foods...but now he is so terribly constipated  took all the laxotove prescribed but..the pain to try to go is unbearable for him and i dont know how to help:(  ....i think he needs hydration..... again wont listen to me..... lost a few more pounds .. he is quite week tried to help doing some yard work but tired very quickly... im fairly certain this is normal though.... has to have more blood tests tomorrow i think they are monitoring the calcium .. he accuses me of only hearing the negative not the positive i tell him thats not true ... I just want to take care of him so we have to watch all the signs....it is so hard he gets so angry with me then apologises..,.. sorry rambeling again..... we will get through this!!!!!

  • wmc
    wmc Member Posts: 1,804

    So we saw the chemo dr ...

    So we saw the chemo dr ... blood works were very good  she said.. calcium levels high though.... im pretty certain it has to do with hydration but he refuses to listen to me she asked him if he wanted to hydrate of course he said no.. ...had a sip of soft drink between 9am  and 2 drove  both ways its close to 2 hours eachway :( ..... she noticed a spot on the back of his throat thinks its likely thrush .. started on meds for that again.. but i cant help worrying its something other than thrush i still worry a lot about the smoking ( he has cut down a lot though) . ... his concentration is off... taste buds seem to be coming back a little had a good weekend  actually managed to eat some solid foods...but now he is so terribly constipated  took all the laxotove prescribed but..the pain to try to go is unbearable for him and i dont know how to help:(  ....i think he needs hydration..... again wont listen to me..... lost a few more pounds .. he is quite week tried to help doing some yard work but tired very quickly... im fairly certain this is normal though.... has to have more blood tests tomorrow i think they are monitoring the calcium .. he accuses me of only hearing the negative not the positive i tell him thats not true ... I just want to take care of him so we have to watch all the signs....it is so hard he gets so angry with me then apologises..,.. sorry rambeling again..... we will get through this!!!!!

    Yep...Needs to Hydrate.....

    The average person needs one half there weight of liquid in ounces. [150lbs = 75oz. of liquid every day] Now throw into the mix, your sick, need more water, you take pain meds, yep more water. If not you will get constipated. Pain meds will add to you being constipated. Soda is not good at this time.[I used to live on Pepsi only] You don't want the caffene or extra sugar, you need water. Take ice chips, and popsicles to hydrate, that helps a lot. If you get to dehydrated the Dr will just stick in an IV of saline. the ld stand by: Chicken broth, chicken noodle soup, and even better and twice the cal. is Cream of chicken soup, 300 cal per can.

    Watch out for calcium being too high. That can put you in the hospital to bring it down if too high.

    Best to you and keep everyone updated on him, and don't you forget to reat as well.

    Bill

  • Hondo
    Hondo Member Posts: 6,636 Member
    Dehydrated

    I agree with Bill

    Be very careful that he does not get too dehydrated is will make him feel weak and very sick all the time. He needs to drink 4 to 5 glasses of water every day; he also needs to put his manhood aside and get a PEG tube to help him. Nobody wants to get a PEG Tube but believe me it will make his life a lot better while he is going through all this.

    Tim Hondo

  • granmudder
    granmudder Member Posts: 41 Member
    i called the nurses hot line

    i called the nurses hot line thay told me to put him in a warm bath and give him pain meds .. if he still has pain to bring him in he is so depressed feels like one step forward and the 2 back.. we have to go for bloods today doesnt feel like he can even sit in the car ... i have just put in a call to his radioligist nurse hoping to hear back soon.. he says he doesnt know what they can do for him anyhow  the nurses hotline also said the an suppositori or enima likely wont work as he is blocked at rectum... he would kill me if he knew i was writing this,, but im just hoping someone else has who has gone through it has some answers:(

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    issues

    Lack of hydration is probably adding to his bowel problems.  Pain meds are also an issue.  See the doctor but my husband drank a lot of water, ate oatmeal and took a stool softener every day.

  • granmudder
    granmudder Member Posts: 41 Member

    issues

    Lack of hydration is probably adding to his bowel problems.  Pain meds are also an issue.  See the doctor but my husband drank a lot of water, ate oatmeal and took a stool softener every day.

    dr we saw in emerg finally go

    dr we saw in emerg finally got through to him !! yay he has started drinking water.. down to a pack of cigarettes evry 3 days... started eating a little more... one day one step at a time... thanks everyone for always listening..

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member

    dr we saw in emerg finally go

    dr we saw in emerg finally got through to him !! yay he has started drinking water.. down to a pack of cigarettes evry 3 days... started eating a little more... one day one step at a time... thanks everyone for always listening..

    a pack in 3 days!  that is

    a pack in 3 days!  that is outstanding!!!  now add drinking water and eating to that and I'd say he is doing a grand job of behaving himself.  i don't know what you did but whatever it was, it worked!!  keep up the good job.

    God bless you both,

    dj

  • wmc
    wmc Member Posts: 1,804

    dr we saw in emerg finally go

    dr we saw in emerg finally got through to him !! yay he has started drinking water.. down to a pack of cigarettes evry 3 days... started eating a little more... one day one step at a time... thanks everyone for always listening..

    That's great

    Drinking the water is s good. Now cutting down to a pack lasting three days is GREAT news. I know how hard it is. To help with having something for your hands to do he might try this. Get a straw and cut it down to about the size of a cigarette and put a small amount of cotton in it. Now get the filters for cigerattes and put that on the end. When he has the urge to smoke put the straw in his mouth and just tell yourself I can go just a little longer, and you do. Now the pack lasts four then five days. It helps having something for your hands. I also used Tic tacks. Best of luck and tell him we're proud of him. I'm 12 months and 14 days three hours. Yes I remember my last cigarette was 8/28/2013 @ 8:00 pm and I never had another one. One day at a time. 

    Bill