Is he escaping

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
Has anyone experience with there loved one, where they are doing really good and then all of a sudden they just crash, Jack will be feeling good one day and then the next day he is not doing good at all, and it can even happen in the same day, He is on his second week of chemo and he is tolerating it good, He is starting to get the rash, but other than that hs has no reaction, I think alot of it is his emotions, somedays he looks so sad, It makes me feel bad cuz I wonder is he fighting so hard for me, I wold hate to think he was in so much pain becasue of me, He tells me he wants to fight the cancer but on days like this it is always in the back of my mind, He is sleeping alot today, I even ha to feed him while he was napping because he just does not want to get up, he did get up to take a pain pill and I told him he was not due for it yet, Im not sure if he is in pain or he is escaping today from it all. It makes me sad to see him like this , I try to keep myself busy, but you can only clean so much, I know he is having alot of problems with his trachea, So Im just at a lost today
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Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    is he on an anti-depressant?
    is he on an anti-depressant? if not it sounds like he should be, or if he is that the drs. should boost it up a bit. when my husband was at his sickest all he did was sleep, refused to bath or even brush his teeth! once he got on an anti-depressant(takes 3 week to kick in) he was much better. he sure sounds depressed and why shouldn't he, get yourself some help too, i am on an anti-depressant as well, makes a big difference with coping.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    Down Days
    My husband had ups and downs. His rash was also pretty bad. They did cut back on the dosage at one point. Our primary dr. asked him if he wanted an antidepressant but he declined. His depression only lasted a short time. Your Jack might benefit from one, though. I think many of us struggle with the is he fighting and suffering just for me question. At one point I just asked him and told him that our sons and I would understand if he chose not to keep on fighting. He told me he had some things left to do and that he wanted to continue the fight. I felt better after that. Our primary dr. told both of us that we were right, that it was his decision, and that he'd know if and when to quit. It's scary though. Just do what you can and what you have to do. I'm sure you'll know what's right.
  • MichelleP
    MichelleP Member Posts: 254
    Patty
    Reading your post so reminded me of the journey we are on also. The non-stop roller coaster ride is just awful isn't it? My husband too has a great day and then suddenly crashes. He sits in his recliner is silence many times....isn't interested in television or radio. He's physically very weak from pneumonia right now, but even before that he spent a lot of time in silence. The doctor did give him anti depressents at my request, but they did nothing. It's hard because he refuses to discuss the prognosis of his disease and relies on me for everything....sometimes to the point of being demanding. But, I certainly don't blame him for feeling the way he does. I just wish he would at least talk about it....simply because he needs to express his feelings....and so do I? But then, many men tend to keep emotions inside I guess. I've laid in bed and wished so desperately he would talk to me about this.
  • sue Siwek
    sue Siwek Member Posts: 279
    MichelleP said:

    Patty
    Reading your post so reminded me of the journey we are on also. The non-stop roller coaster ride is just awful isn't it? My husband too has a great day and then suddenly crashes. He sits in his recliner is silence many times....isn't interested in television or radio. He's physically very weak from pneumonia right now, but even before that he spent a lot of time in silence. The doctor did give him anti depressents at my request, but they did nothing. It's hard because he refuses to discuss the prognosis of his disease and relies on me for everything....sometimes to the point of being demanding. But, I certainly don't blame him for feeling the way he does. I just wish he would at least talk about it....simply because he needs to express his feelings....and so do I? But then, many men tend to keep emotions inside I guess. I've laid in bed and wished so desperately he would talk to me about this.

    you know, nearly 10 years
    you know, nearly 10 years into all of this, my husband does have a few moments where we talk. i think in some ways that is the age that they are. for instance my husband is 66, a vietnam vet, tough! never abusive with me or our children but unwilling to share feelings. i think that is partly upbringing but also surviving that war. and i believe that is how he survives now. every once in awhile he will tear up and ask to be comforted, that i do willingly. he provided so well for me and our children that i am able to be home and care for him. i have learned that with men that don't share ,you just have to hold them and hold on. it is hard to navigate through their feelings and at the same time realize our own. you can't force him to share his feelings, just be there for him. after 10 years my husband has begun to thank me for taking care of him and, i in return thank him for the wonderful life he has provided me. just try to read his cues. good luck.
  • pattynonews
    pattynonews Member Posts: 176
    MichelleP said:

    Patty
    Reading your post so reminded me of the journey we are on also. The non-stop roller coaster ride is just awful isn't it? My husband too has a great day and then suddenly crashes. He sits in his recliner is silence many times....isn't interested in television or radio. He's physically very weak from pneumonia right now, but even before that he spent a lot of time in silence. The doctor did give him anti depressents at my request, but they did nothing. It's hard because he refuses to discuss the prognosis of his disease and relies on me for everything....sometimes to the point of being demanding. But, I certainly don't blame him for feeling the way he does. I just wish he would at least talk about it....simply because he needs to express his feelings....and so do I? But then, many men tend to keep emotions inside I guess. I've laid in bed and wished so desperately he would talk to me about this.

    antidepressants
    Yea he is on anti depressants we just had to change it because the ont that he was on could not be put in his tube so he is on a new one, actually he has two one for depressio and one for anixety, we go back to the pschy to re evaluate on Oct 5th so maybe we will have to readjust, I think what is frusrating him the most he is having a hard time talking, the tumor is sitting on the trachea, so I know he is frustrated I have learn to understand what he is saying, but his dad cant hear that could and Jack cant talk, so it gets a little heated sometimes, I think the change of the antidepressant might have something to do with it, Yea Jack relies on me alot, He is getting better, he will get up nd feed him self if I am resting, and get his own meds, He just does not like to be left alone or for me . It is just so sad tho see him on days like this, This was a man who would play the drums for a 2 / 2 hour sets, and it takes alot of enegry and strength to be able to do that, and now he play here and there for maybe 10 minutes, THe doctors did say him playing is what kept him in such great shape and plus he use to run at least 5 miles a day, the muslce in his arms and legs were amazing,But he still has the heart of gold, and faith to keep fighting, And he never had any health problems before this cancer, The only thing that he stay interested in and keeps his mind off th cancer is his music and playing the play station, I ust keep praying this chemo is going to stop the tumors from spreading, Jack is my life and I will be lost without him I finally found my soulmate,
    My prayers are with you Michele, I know how you feel

    Patty
  • slickwilly
    slickwilly Member Posts: 334

    antidepressants
    Yea he is on anti depressants we just had to change it because the ont that he was on could not be put in his tube so he is on a new one, actually he has two one for depressio and one for anixety, we go back to the pschy to re evaluate on Oct 5th so maybe we will have to readjust, I think what is frusrating him the most he is having a hard time talking, the tumor is sitting on the trachea, so I know he is frustrated I have learn to understand what he is saying, but his dad cant hear that could and Jack cant talk, so it gets a little heated sometimes, I think the change of the antidepressant might have something to do with it, Yea Jack relies on me alot, He is getting better, he will get up nd feed him self if I am resting, and get his own meds, He just does not like to be left alone or for me . It is just so sad tho see him on days like this, This was a man who would play the drums for a 2 / 2 hour sets, and it takes alot of enegry and strength to be able to do that, and now he play here and there for maybe 10 minutes, THe doctors did say him playing is what kept him in such great shape and plus he use to run at least 5 miles a day, the muslce in his arms and legs were amazing,But he still has the heart of gold, and faith to keep fighting, And he never had any health problems before this cancer, The only thing that he stay interested in and keeps his mind off th cancer is his music and playing the play station, I ust keep praying this chemo is going to stop the tumors from spreading, Jack is my life and I will be lost without him I finally found my soulmate,
    My prayers are with you Michele, I know how you feel

    Patty

    A male perspective
    I can't put myself in your husbands shoes but I can tell you how I felt during my cancer. I am 54 years old and a 6 year survivor. Showing emotion in front of my loved ones was not something I ever wanted to do as I didn't want to scare them. To open up about all the pain involved in the treatments, side effects and cancer itself was not a door I wanted to open as it led to more depression. I wanted someone around so I didn't have so much time to think about what might happen. I wanted that hug and someone to tell me everything was going to be ok. Despite my best efforts I needed someone to keep track of my drugs as the chemo really messed up my thought process. When I was in pain, I was quiet as I didn't want to take my pain and frustration out on others. There are a million emotions going through your brain. Feeling like a financial drain on the family. Not being able to work and feeling worthless after having worked your whole life. The friends and family members that just don't get what is going on or disappear from you life. I think the best therapy I had was talking to another friend that was going through cancer at the same time that I was.
    All of you women are doing a great job during a very hard situation. If many of us were going through treatments just for ourselves we would proubly give up as it would be much easier. Many times we fight hard because there are those that love or care about us and that is a good thing. There are a couple easy questions you can ask each day that lets a person know you care. What is your Pain level? 1-10. Where do you hurt? What can I do to help you? The warm sun or a warm blanket helped ease my bone and muscle pain. Music helped fill time. Reading was out of the question as I could not remember the page I had just read. Short term goals are a good thing. I just wanted to survive until my daughters graduated from school one year after I started cancer treatments. It gave me something to shoot for. Well that is my male perspective. We all come from different environments but we all have one thing in common. We want to live! Bless you all Slickwilly
  • pattynonews
    pattynonews Member Posts: 176

    A male perspective
    I can't put myself in your husbands shoes but I can tell you how I felt during my cancer. I am 54 years old and a 6 year survivor. Showing emotion in front of my loved ones was not something I ever wanted to do as I didn't want to scare them. To open up about all the pain involved in the treatments, side effects and cancer itself was not a door I wanted to open as it led to more depression. I wanted someone around so I didn't have so much time to think about what might happen. I wanted that hug and someone to tell me everything was going to be ok. Despite my best efforts I needed someone to keep track of my drugs as the chemo really messed up my thought process. When I was in pain, I was quiet as I didn't want to take my pain and frustration out on others. There are a million emotions going through your brain. Feeling like a financial drain on the family. Not being able to work and feeling worthless after having worked your whole life. The friends and family members that just don't get what is going on or disappear from you life. I think the best therapy I had was talking to another friend that was going through cancer at the same time that I was.
    All of you women are doing a great job during a very hard situation. If many of us were going through treatments just for ourselves we would proubly give up as it would be much easier. Many times we fight hard because there are those that love or care about us and that is a good thing. There are a couple easy questions you can ask each day that lets a person know you care. What is your Pain level? 1-10. Where do you hurt? What can I do to help you? The warm sun or a warm blanket helped ease my bone and muscle pain. Music helped fill time. Reading was out of the question as I could not remember the page I had just read. Short term goals are a good thing. I just wanted to survive until my daughters graduated from school one year after I started cancer treatments. It gave me something to shoot for. Well that is my male perspective. We all come from different environments but we all have one thing in common. We want to live! Bless you all Slickwilly

    Thank you Slickwilly
    I had Jack read what you wrote and he say Thank you so much, it made sense, to him, I notice with Jack , he tries so hard to do everything now he said he was going to take your advice small goals, and he loveshis music, but he does jump from thing to thing to thing an then he gets frustrated, so he said he is really going to work on that, and he is starting to wrie his feeling out on paper, which I think is a good thing, But I think him hearing it from another man, it hit him, in a good way, and I thank you for that,

    Patty and Jack
  • slickwilly
    slickwilly Member Posts: 334

    Thank you Slickwilly
    I had Jack read what you wrote and he say Thank you so much, it made sense, to him, I notice with Jack , he tries so hard to do everything now he said he was going to take your advice small goals, and he loveshis music, but he does jump from thing to thing to thing an then he gets frustrated, so he said he is really going to work on that, and he is starting to wrie his feeling out on paper, which I think is a good thing, But I think him hearing it from another man, it hit him, in a good way, and I thank you for that,

    Patty and Jack

    We never quit learning
    Hi Patty and Jack. I am glad I helped some. When we are dealing with cancer or have had cancer it makes a world of difference talking to someone that has been there. Sometimes we begin to doubt our own sanity or symptoms only to find out we are just like someone else. Its great that Jack will be writing his feelings down. If he allows you to read them please don't jump to any conclusions as we can all read into something and come out with the wrong idea. If you have a question about something he writes ask! We all go through our periods of ups and downs and I think right after a chemo treatment and right before the next one its at its worst.
    I think jumping from thing to thing goes along with the anxiety, pain drugs ect. I was a great one for forgetting something on the stove and setting off the smoke detectors. My dog was tired of getting left out in the rain and if something was not written down I was not going to remember it. All of this leads to more frustation of course.
    From reading your letters I suspect Jack is a very active person. I worked in a State Prison, snowmobile raced, camped, sailed and always had some mechanical project in my garage that I was working on. When everything comes to a stop a large part of our life is missing and it takes months or years to adjust. I am on disability now and do things that cause days of pain rather then sit on the couch. One thing I learned during my cancer was that I needed to do something daily so I had a sense of accomplishment. So each night I would think of three small things I could try to do the next day. It could be something as simple as the dishes, laundry, cleaning a toilet ect. But at least I was doing something. It helped me feel like I was worth something and contributing in some way to the household. I wish only the best for you and Jack. Blessings Slickwilly
  • pattynonews
    pattynonews Member Posts: 176

    We never quit learning
    Hi Patty and Jack. I am glad I helped some. When we are dealing with cancer or have had cancer it makes a world of difference talking to someone that has been there. Sometimes we begin to doubt our own sanity or symptoms only to find out we are just like someone else. Its great that Jack will be writing his feelings down. If he allows you to read them please don't jump to any conclusions as we can all read into something and come out with the wrong idea. If you have a question about something he writes ask! We all go through our periods of ups and downs and I think right after a chemo treatment and right before the next one its at its worst.
    I think jumping from thing to thing goes along with the anxiety, pain drugs ect. I was a great one for forgetting something on the stove and setting off the smoke detectors. My dog was tired of getting left out in the rain and if something was not written down I was not going to remember it. All of this leads to more frustation of course.
    From reading your letters I suspect Jack is a very active person. I worked in a State Prison, snowmobile raced, camped, sailed and always had some mechanical project in my garage that I was working on. When everything comes to a stop a large part of our life is missing and it takes months or years to adjust. I am on disability now and do things that cause days of pain rather then sit on the couch. One thing I learned during my cancer was that I needed to do something daily so I had a sense of accomplishment. So each night I would think of three small things I could try to do the next day. It could be something as simple as the dishes, laundry, cleaning a toilet ect. But at least I was doing something. It helped me feel like I was worth something and contributing in some way to the household. I wish only the best for you and Jack. Blessings Slickwilly

    yes we are learning
    I read your letters to Jack I think he understand a little beter coming from a man side of it, and e thanks you, I know he gets frustrated because for some reason he can not talk with his trachea, so we have a board, and now that is how we communicated, even though I can talk we had a whole heart to heart conversation on the board we just wrote back and forth, and I think it made him feel like he is not alone in all of this, It is hard to get out anywhere right now becausr Jack immune system is so low and th flu out here in Texas is so bad, so we make the best of it, But I will keep showing Jack your post, he enjoys them

    Jack and Patty
  • SonSon
    SonSon Member Posts: 174

    yes we are learning
    I read your letters to Jack I think he understand a little beter coming from a man side of it, and e thanks you, I know he gets frustrated because for some reason he can not talk with his trachea, so we have a board, and now that is how we communicated, even though I can talk we had a whole heart to heart conversation on the board we just wrote back and forth, and I think it made him feel like he is not alone in all of this, It is hard to get out anywhere right now becausr Jack immune system is so low and th flu out here in Texas is so bad, so we make the best of it, But I will keep showing Jack your post, he enjoys them

    Jack and Patty

    Talking with a Trach
    Talk to the doctor - or at least the nurse - about talking with his trach.
    I have worked with people who have trachs - they reach up (after INHALING) and close the exit hole to talk. It will take practice and may be uncomfortable at first.
    That is why I suggest asking the doctor or nurse. The area may be really tender just yet.
    ((((((((Jack & Patty)))))))
    Fatima
  • pattynonews
    pattynonews Member Posts: 176
    SonSon said:

    Talking with a Trach
    Talk to the doctor - or at least the nurse - about talking with his trach.
    I have worked with people who have trachs - they reach up (after INHALING) and close the exit hole to talk. It will take practice and may be uncomfortable at first.
    That is why I suggest asking the doctor or nurse. The area may be really tender just yet.
    ((((((((Jack & Patty)))))))
    Fatima

    Trachea
    We have been to the ENT and they said his trache was fine, I think his tumor sits on it, and it causes him some diffulty, He has a speaking value and he was doing good, but they believe with the chemo and the steriods so they say think there is swelling in the tumor area, The onocologist and the Ent are going to discuss what they are going to do, All I know he can not talk right now and there is lot of mucous,

    We also went to chemo and I was a little upset, because his hemglobin droped down to 9.6 and Jack has a history that his levels drop fast, on chemo, and before we started this chemo it was a concern and I discuss if his level dropped under 10 I want him on procrit so he will not end up in the hospital to have another blood transfusion, so when I aksed they said no, so I will be pretty upset if we go back next week and his level drop again, because if it goes under 8 he will need another transfusion, I dont understand why they dont do prevented measures before things go south,
  • SonSon
    SonSon Member Posts: 174

    Trachea
    We have been to the ENT and they said his trache was fine, I think his tumor sits on it, and it causes him some diffulty, He has a speaking value and he was doing good, but they believe with the chemo and the steriods so they say think there is swelling in the tumor area, The onocologist and the Ent are going to discuss what they are going to do, All I know he can not talk right now and there is lot of mucous,

    We also went to chemo and I was a little upset, because his hemglobin droped down to 9.6 and Jack has a history that his levels drop fast, on chemo, and before we started this chemo it was a concern and I discuss if his level dropped under 10 I want him on procrit so he will not end up in the hospital to have another blood transfusion, so when I aksed they said no, so I will be pretty upset if we go back next week and his level drop again, because if it goes under 8 he will need another transfusion, I dont understand why they dont do prevented measures before things go south,

    ask them...
    They may have a very good reason why they don't want to do procrit - so ask them. I have not advice or ideas on that at all.
    Did they set you up with a suction machine so that you can suction the mucous from his trach? Ask about that.
    Fatima
  • pattynonews
    pattynonews Member Posts: 176
    SonSon said:

    ask them...
    They may have a very good reason why they don't want to do procrit - so ask them. I have not advice or ideas on that at all.
    Did they set you up with a suction machine so that you can suction the mucous from his trach? Ask about that.
    Fatima

    suction machine,
    Yea we have a suction machine we have the humifier, the o2 we have it all but nothing is helping the mucous, Im getting frustrated all I do is clean up mucos, it is driving me crazing, am a lysol freak now and bleach just wiping everything down, it is crazy, I never new one man could have so much mucos, I have him on sudafed like they said , mucunix, you know the the bigger guy in the commerical, I swear that is Jack, just cuter ( LOL ) im at a lost
  • SonSon
    SonSon Member Posts: 174

    suction machine,
    Yea we have a suction machine we have the humifier, the o2 we have it all but nothing is helping the mucous, Im getting frustrated all I do is clean up mucos, it is driving me crazing, am a lysol freak now and bleach just wiping everything down, it is crazy, I never new one man could have so much mucos, I have him on sudafed like they said , mucunix, you know the the bigger guy in the commerical, I swear that is Jack, just cuter ( LOL ) im at a lost

    Mucous
    I can just imagine you being the wipe freak these days. I tell you, mucous is one thing that grosses me out. I can be up to my elbows in poop and hardly flinch... but spew mucous on me and I am gagging. (go figure).
    I recall someone saying something about mucous on another message thread and there was a medicine for it. I will have to look for that and get back to you. They said that the mucous is part of the side effects (or after effects) of chemo therapy.
    Fatima
  • mr steve
    mr steve Member Posts: 285

    We never quit learning
    Hi Patty and Jack. I am glad I helped some. When we are dealing with cancer or have had cancer it makes a world of difference talking to someone that has been there. Sometimes we begin to doubt our own sanity or symptoms only to find out we are just like someone else. Its great that Jack will be writing his feelings down. If he allows you to read them please don't jump to any conclusions as we can all read into something and come out with the wrong idea. If you have a question about something he writes ask! We all go through our periods of ups and downs and I think right after a chemo treatment and right before the next one its at its worst.
    I think jumping from thing to thing goes along with the anxiety, pain drugs ect. I was a great one for forgetting something on the stove and setting off the smoke detectors. My dog was tired of getting left out in the rain and if something was not written down I was not going to remember it. All of this leads to more frustation of course.
    From reading your letters I suspect Jack is a very active person. I worked in a State Prison, snowmobile raced, camped, sailed and always had some mechanical project in my garage that I was working on. When everything comes to a stop a large part of our life is missing and it takes months or years to adjust. I am on disability now and do things that cause days of pain rather then sit on the couch. One thing I learned during my cancer was that I needed to do something daily so I had a sense of accomplishment. So each night I would think of three small things I could try to do the next day. It could be something as simple as the dishes, laundry, cleaning a toilet ect. But at least I was doing something. It helped me feel like I was worth something and contributing in some way to the household. I wish only the best for you and Jack. Blessings Slickwilly

    slickwilly
    Thank you for insite. My wife is still recovering from modified wipple surgery, with more surgery next week. now I know why she brags when she does something around the house (I tell her she does not need too)now I know to thank her even more, and keep my eyes open to the small things she does.

    Thanks!!!
  • junklady
    junklady Member Posts: 88 Member

    suction machine,
    Yea we have a suction machine we have the humifier, the o2 we have it all but nothing is helping the mucous, Im getting frustrated all I do is clean up mucos, it is driving me crazing, am a lysol freak now and bleach just wiping everything down, it is crazy, I never new one man could have so much mucos, I have him on sudafed like they said , mucunix, you know the the bigger guy in the commerical, I swear that is Jack, just cuter ( LOL ) im at a lost

    Mucous and trach
    Patty- I'm with you, the mucous is awful. Dale gets so frustrated and tired with dealing with it. It wears him out. We have the suction machine and humidifier too. I am constantly cleaning, washing and sanitizing too. He is also exhausted and frustrated when he tries to talk. Maybe gets one or two words out, sometimes a short sentence. His trach is only 3 weeks old, no speaking valve yet. Go figure we drive 150 miles round trip to the Doc for a 5 minute visit. He says everything looks good and mucous is part of the healing process. Right! The worst part is coming home form the Doc. Elevation 2500 ft; at the Doc's office, we live at 5000 ft. The coughing, mucous, and blood gets worse as the elevation goes up. By the time we get home he as to take a nap. My heart just breaks to see him in this condition. There are just no words I can say to comfort him, except I love you and I'm here for you. I hate it.I don't want him to give up. I guess we all have to take one day at a time. I tell myself when I get up "be strong today". Take care.
  • slickwilly
    slickwilly Member Posts: 334
    mr steve said:

    slickwilly
    Thank you for insite. My wife is still recovering from modified wipple surgery, with more surgery next week. now I know why she brags when she does something around the house (I tell her she does not need too)now I know to thank her even more, and keep my eyes open to the small things she does.

    Thanks!!!

    mr steve
    Your wife has every right to brag about anything she can accomplish and its great if you recognize even the smallest things she does. I can only relate cancer treatment to having the worst case of the flu that you have ever had with every bone and muscle in your body in pain. Despite that, I feel the hundreds of mental issues we deal with going through our heads is even worse. Anything we do that can get our mind off of cancer and feeling better about ourselves is a great thing. I remember loving a hot bath so my body could float and I would be pain free for 20 minutes. It was my way of recharging myself each day.
    To everyone reading this remember to be patient if your spouse is trying to do things. Being on pain drugs ect its easy to break dishes, fall over or forget things. 6 years out of treatments I am still on a bunch of pain drugs as my spine fell apart. I doubt my wife has many of our original dish set left. I have burnt food, fell off steps, run into doorways and left my poor dog outside in the rain more times than I can remember. Today I mowed my grass and fell down twice. But sitting around and doing nothing is not an option as depression soon follows. Best of luck to you and your wife Steve. It sounds like your doing a great job in a very hard situation. Slickwilly
  • mr steve
    mr steve Member Posts: 285

    mr steve
    Your wife has every right to brag about anything she can accomplish and its great if you recognize even the smallest things she does. I can only relate cancer treatment to having the worst case of the flu that you have ever had with every bone and muscle in your body in pain. Despite that, I feel the hundreds of mental issues we deal with going through our heads is even worse. Anything we do that can get our mind off of cancer and feeling better about ourselves is a great thing. I remember loving a hot bath so my body could float and I would be pain free for 20 minutes. It was my way of recharging myself each day.
    To everyone reading this remember to be patient if your spouse is trying to do things. Being on pain drugs ect its easy to break dishes, fall over or forget things. 6 years out of treatments I am still on a bunch of pain drugs as my spine fell apart. I doubt my wife has many of our original dish set left. I have burnt food, fell off steps, run into doorways and left my poor dog outside in the rain more times than I can remember. Today I mowed my grass and fell down twice. But sitting around and doing nothing is not an option as depression soon follows. Best of luck to you and your wife Steve. It sounds like your doing a great job in a very hard situation. Slickwilly

    slickwilly
    again I say thank you! we head up to OSU Sunday for more surgery. Maybe I'll try and get her out to mow the grass too...LOL...

    I'll run a nice hot bubble bath for her tonight to let her relax...

    thanks for the reply.
    Steve
  • pattynonews
    pattynonews Member Posts: 176
    junklady said:

    Mucous and trach
    Patty- I'm with you, the mucous is awful. Dale gets so frustrated and tired with dealing with it. It wears him out. We have the suction machine and humidifier too. I am constantly cleaning, washing and sanitizing too. He is also exhausted and frustrated when he tries to talk. Maybe gets one or two words out, sometimes a short sentence. His trach is only 3 weeks old, no speaking valve yet. Go figure we drive 150 miles round trip to the Doc for a 5 minute visit. He says everything looks good and mucous is part of the healing process. Right! The worst part is coming home form the Doc. Elevation 2500 ft; at the Doc's office, we live at 5000 ft. The coughing, mucous, and blood gets worse as the elevation goes up. By the time we get home he as to take a nap. My heart just breaks to see him in this condition. There are just no words I can say to comfort him, except I love you and I'm here for you. I hate it.I don't want him to give up. I guess we all have to take one day at a time. I tell myself when I get up "be strong today". Take care.

    junklady it is driving me crazing
    Now not only is his trachea draining and he coughs he strains and ruptures the vessesl that is why it starts to bleed and the doctors also tells us it is part of having a trachea, I see people with trachea and they are not like that, The doctors just tells us it happens with some people, and now is nose is running like a water faucet, and of course no one can give us an answer I tried muciex ( and have you tried to crush that and put it through a tube ) I tried sudafed and now I just went and bought clarinet, and of course I left messages on his doctors phone but it is friday, So he is walking around with tissue stuck up his nose, theyre has to be something to dry him out, the saline helped with the cough a little, but it is one thing afer another with this trachea, and Jack does not realize sometime when he is coughing and he does not cover his trachea totally it sprays, so Im constantly chasing him with the lysol, I should have stock wih that and frebrezz because with the drainage it has an odor, so Im trying to keep everything sterile but it is an ongoing task, he tires himself out with the trachea situation, and he is so swollen in his face I believe that is why he has so much problem with his trachea cuz the tumor is right there and he is on steriods, but he looks like an over size chickmuck right now . He takes nothing by mouth so have to also make sure he stays dehydrated, I just wish I could make him feel better he says his pain is undercontol and it is just the trachea and the drainage, It just breaks my heart to see him like this I just sat there and cried for about 2 hours last night, And he has goes to the best cancer center in Texas, but will it be enough, we all know his cancer will never go in to remission he has stage 4 and it has spread, ( not much but alittle to his lungs and liver ) all his liver function are perfect, his lungs are clear, I just want some answers for his trachea!
  • pattynonews
    pattynonews Member Posts: 176

    mr steve
    Your wife has every right to brag about anything she can accomplish and its great if you recognize even the smallest things she does. I can only relate cancer treatment to having the worst case of the flu that you have ever had with every bone and muscle in your body in pain. Despite that, I feel the hundreds of mental issues we deal with going through our heads is even worse. Anything we do that can get our mind off of cancer and feeling better about ourselves is a great thing. I remember loving a hot bath so my body could float and I would be pain free for 20 minutes. It was my way of recharging myself each day.
    To everyone reading this remember to be patient if your spouse is trying to do things. Being on pain drugs ect its easy to break dishes, fall over or forget things. 6 years out of treatments I am still on a bunch of pain drugs as my spine fell apart. I doubt my wife has many of our original dish set left. I have burnt food, fell off steps, run into doorways and left my poor dog outside in the rain more times than I can remember. Today I mowed my grass and fell down twice. But sitting around and doing nothing is not an option as depression soon follows. Best of luck to you and your wife Steve. It sounds like your doing a great job in a very hard situation. Slickwilly

    Baby Steps
    Jack is taking your advice, slickwilly, he does something small everyday, he takes care of his plants, and light his incents, He is even taking small walks with the dog to the mailbox, I sometimes worry when he gets out side and pulls the weeds,but if he feels up to I just watch to make sure he is ok, he is even getting more interested on the computer again, so I tell him remember what slickwilly says ( BABYSTEPS ) I have to learn to be patient with him when we get ready to go to the store, Im the type I just grab my purse and go now with Jack his mind wonders and it seems like it takes him for ever, to get out o the door, and it seems he wants to bring everything with him, Trachea kits, sterile water, and I tell him we are just going down the road, but I think it is like a safety net, so now I keep and emerency box of everything he might need in a bad so all we have to do is grab the bag, see we all have to retrain our selves everyday with this cancer live,