Rocky Roller Coaster

mrsptsu2012
mrsptsu2012 Member Posts: 63
in Lung Cancer #1
It seems I keep getting more and more negative news everyday. By the time I get through the initial shock of one thing, I am told more. My husband whose lung cancer is stage IV small cell which has spread to the brain, now has 12 + mets on the brain and receiving radiation treatment. Additionally, the lung specialist has now told me the original mass on the lower left lung has grown from 1 cm to 3 in and has several additional spots on both lungs as well as a fungal infection. I have been given a prognosis of less than six months with the radiation to the brain. I really need some survival stories right now from anyone who has had similar situation. I want to remain positive for him; he said he has the faith of a mustard seed and is not giving up. I want to believe there is a light at the end of the tunnel, but it is so hard when getting hit with additional negative news everyday. He has now had two rounds of radiation and is talking with confusion. Should I go along with his confused state or straighten it out for him? At this point will he really know the difference either way? This is all new to me.

Comments

  • cabbott
    cabbott Member Posts: 1,039 Member
    #2
    What to do
    Nurses at your husband's clinic could probably advise you the best on the confusion. Call the doctor's office or person on call to report what is happening just in case they have a medical solution. Sometimes they have drugs to reduce issues that come up like this. Personally, I'd avoid fighting as much as possible. I'd tend to agree with what he says but still do whatever needs to be done.

    Please take good care of yourself during this difficult time. Call others to help you out. Take a regular break every day leaving your husband in good hands so you can recover. Find a medical social worker or nurse you can call for support (your suport as you need support as much as your husband right now). As for your husband,a second opinion from another doctor may lead to better possibilities. Involving him in a study might help. If he is too ill to benifit from active treatment or a study, find out what you can do to make the most of every minute he has left. Of course, I bet you are doing that already. Just being there, as difficult as it is, is the most important thing you can do.
  • KLScoville
    KLScoville Member Posts: 161 Member
    #3
    been reading your posts
    Hello,

    I have been reading your posts and I am sorry that you and your husband are going through this as am I. My husband was diagnosed with Stage IV lung cancer (I am still unsure if it is small cell or non small cell) with mets all along his aorta (and I am sure in other places per the PET scan). He is also a diabetic which makes it harder. He was officially diagnosed on 3/3/11 with a prognosis of 9 months without chemo treatment (he doesn't want it) and 1 1/2 years with chemo. Because of him not wanting chemo they could only offer him pallative radiation. He did do the radiation to shrink the tumors that were in his jaw and belly (pressing against his spine). He stopped the radiation in June since the tumors were not present anymore, but as of today they have come back and he will probably go see the rad onc again soon. He was seeing an oncologist up until May. He didn't know what the sense was in seeing him because all the oncologist wanted to do was try to get him to do chemo. The oncologist immediately put him on hospice and he is still with them. He is also on liquid morphine because he got thrush and was unable to swallow pills let alone eat any food. I had to puree all of his food and still do depending on what it is. The hospice nurses come once a week if needed but since I am not working at the present they really don't need to.

    Anyways, to answer some of your questions through my experience so far. My husband did have confusion and that was due to the pain medication and the radiation. Take a look at my past posts. One day he thought there was a dead salesman in our other bedroom. Mind you, I set him straight by saying "there is no dead person in this house...yet" I know that sounds like the wrong thing to say but in order for me to keep from going insane and be able to take care of my husband, I have to have a sense of humor. Sure I am human too, I do break down and "lose it" but I have to be strong for my husband and make sure that he is pain free. Lately his pain has become much worse to where he is taking his morphine moreso now than he has since he started it. Also he is taking alot more naps. Yes, your man will have bouts of confusion. Mine is even talking and laughing in his sleep, he never use to do that. Also he has muscle jerks while he is sleeping which keep me awake which is really tough when you have a water bed. I think that I am going to have to start taking a dramimine (sp?) before I go to bed.

    There is no set "time frame" of when the inevitable will happen. The only thing I can say is be there for him. Also ask the radiologist oncologist or the oncologist what Hospice program they are affiliated with and see if you can get them in there. They are a big help to not only my husband but to me also. The whole crew comes over which my husband both likes and dislikes at the same time. My husband not being a religious person actually likes the Chaplin, they hang out and watch golf. The dislikes are the nurses doing their thing which intails checking vitals and such. When they are leaving I go outside with them and we talk. They really care for not only the patient but they also care on how the caregiver is doing. They also can answer alot of your questions.

    I feel for you as a caregiver myself. I wanted to know answers "right now" and I wanted to know the prognosis "right now". But I have come to realize when it happens it will happen and the only thing I can do right now is enjoy all the time I have left with my man and take care of him the best way I know how! Yeah we bump heads sometimes (because I am always right) but that will be a memory for me that I will never forget. I don't want the day to come when he is gone cause you will have to put me away but right now, I enjoy the man that I married. I tell people "Out of all the husband's that I have had, I actually want to keep this one and he is leaving me!"

    Honey, make sure you take care of yourself too! That is very important! Take naps when he does and smile alot at him (I know it will be hard). Tell him throughout the course of the day that you love him! Okay time for me to check on my man who is napping. My thoughts and prayers are with you!

    God bless!
    ~Kelly
  • mrsptsu2012
    mrsptsu2012 Member Posts: 63
    #4
    KLScoville said:

    been reading your posts
    Hello,

    I have been reading your posts and I am sorry that you and your husband are going through this as am I. My husband was diagnosed with Stage IV lung cancer (I am still unsure if it is small cell or non small cell) with mets all along his aorta (and I am sure in other places per the PET scan). He is also a diabetic which makes it harder. He was officially diagnosed on 3/3/11 with a prognosis of 9 months without chemo treatment (he doesn't want it) and 1 1/2 years with chemo. Because of him not wanting chemo they could only offer him pallative radiation. He did do the radiation to shrink the tumors that were in his jaw and belly (pressing against his spine). He stopped the radiation in June since the tumors were not present anymore, but as of today they have come back and he will probably go see the rad onc again soon. He was seeing an oncologist up until May. He didn't know what the sense was in seeing him because all the oncologist wanted to do was try to get him to do chemo. The oncologist immediately put him on hospice and he is still with them. He is also on liquid morphine because he got thrush and was unable to swallow pills let alone eat any food. I had to puree all of his food and still do depending on what it is. The hospice nurses come once a week if needed but since I am not working at the present they really don't need to.

    Anyways, to answer some of your questions through my experience so far. My husband did have confusion and that was due to the pain medication and the radiation. Take a look at my past posts. One day he thought there was a dead salesman in our other bedroom. Mind you, I set him straight by saying "there is no dead person in this house...yet" I know that sounds like the wrong thing to say but in order for me to keep from going insane and be able to take care of my husband, I have to have a sense of humor. Sure I am human too, I do break down and "lose it" but I have to be strong for my husband and make sure that he is pain free. Lately his pain has become much worse to where he is taking his morphine moreso now than he has since he started it. Also he is taking alot more naps. Yes, your man will have bouts of confusion. Mine is even talking and laughing in his sleep, he never use to do that. Also he has muscle jerks while he is sleeping which keep me awake which is really tough when you have a water bed. I think that I am going to have to start taking a dramimine (sp?) before I go to bed.

    There is no set "time frame" of when the inevitable will happen. The only thing I can say is be there for him. Also ask the radiologist oncologist or the oncologist what Hospice program they are affiliated with and see if you can get them in there. They are a big help to not only my husband but to me also. The whole crew comes over which my husband both likes and dislikes at the same time. My husband not being a religious person actually likes the Chaplin, they hang out and watch golf. The dislikes are the nurses doing their thing which intails checking vitals and such. When they are leaving I go outside with them and we talk. They really care for not only the patient but they also care on how the caregiver is doing. They also can answer alot of your questions.

    I feel for you as a caregiver myself. I wanted to know answers "right now" and I wanted to know the prognosis "right now". But I have come to realize when it happens it will happen and the only thing I can do right now is enjoy all the time I have left with my man and take care of him the best way I know how! Yeah we bump heads sometimes (because I am always right) but that will be a memory for me that I will never forget. I don't want the day to come when he is gone cause you will have to put me away but right now, I enjoy the man that I married. I tell people "Out of all the husband's that I have had, I actually want to keep this one and he is leaving me!"

    Honey, make sure you take care of yourself too! That is very important! Take naps when he does and smile alot at him (I know it will be hard). Tell him throughout the course of the day that you love him! Okay time for me to check on my man who is napping. My thoughts and prayers are with you!

    God bless!
    ~Kelly

    Thank you so much for answering to my post. I have been looking for someone I feel I connect to (similar feelings, story, etc.). I think what really got me about your post is that you said "Out of all the husband's that I have had, I actually want to keep this one and he is leaving me!" That's my sentiment exactly. He is not just my husband; he is my soul mate. There is only one of them! He too before all this wasn't much on religion. Now, he says I am listening and putting too much into what man says that his faith is in God and it is in his hands. He keeps telling me all he wants man to do is give him the 10 treatments they promised his wife. He said they are not going to promise my wife something and go back on their word; she is going to get what they promised her. I have fibromyalgia and my memory isn't what it used to be so he worries more about me than himself. He keeps telling me "I'm straight baby, but how are you." That's an everday question. He just wants to know I am okay. Our humor is when our two conditions don't coincide with each other; we get a good laugh out of that! He tells me everyday "They are going to see him on the news as someone to go down in history; saying, he lived." I admire his strength and positive outlook. He still takes the time out to fuss with me about letting our grown children run over me
  • KLScoville
    KLScoville Member Posts: 161 Member
    #5
    mrsptsu2012 said:

    Thank you so much for answering to my post. I have been looking for someone I feel I connect to (similar feelings, story, etc.). I think what really got me about your post is that you said "Out of all the husband's that I have had, I actually want to keep this one and he is leaving me!" That's my sentiment exactly. He is not just my husband; he is my soul mate. There is only one of them! He too before all this wasn't much on religion. Now, he says I am listening and putting too much into what man says that his faith is in God and it is in his hands. He keeps telling me all he wants man to do is give him the 10 treatments they promised his wife. He said they are not going to promise my wife something and go back on their word; she is going to get what they promised her. I have fibromyalgia and my memory isn't what it used to be so he worries more about me than himself. He keeps telling me "I'm straight baby, but how are you." That's an everday question. He just wants to know I am okay. Our humor is when our two conditions don't coincide with each other; we get a good laugh out of that! He tells me everyday "They are going to see him on the news as someone to go down in history; saying, he lived." I admire his strength and positive outlook. He still takes the time out to fuss with me about letting our grown children run over me

    I know it is rough
    Hey Sweetie,

    I know it is rough for you with having your husband in the condition he is in and with your medical problems. It sounds like your husband is a very loving man and cares for you deeply! Praise God for that because not many men in this world are like that anymore.

    In terms of my husbands affection, that went right out the window a long time ago and I know when to love on him and when to "back off". He just now got up from his nap that he started at 9:30 am EDT and I am reading from him....back off. So I do whatever pleases him. Sometimes you feel as if you did something wrong..don't think that! It is the damn cancer affecting the mood! I hate cancer. Sorry had to vent a bit! If you need to vent I am here.

    Take care and check out some of the caregivers posts too.

    Thanks for listening.
    ~Kelly
  • mrsptsu2012
    mrsptsu2012 Member Posts: 63
    #6
    KLScoville said:

    I know it is rough
    Hey Sweetie,

    I know it is rough for you with having your husband in the condition he is in and with your medical problems. It sounds like your husband is a very loving man and cares for you deeply! Praise God for that because not many men in this world are like that anymore.

    In terms of my husbands affection, that went right out the window a long time ago and I know when to love on him and when to "back off". He just now got up from his nap that he started at 9:30 am EDT and I am reading from him....back off. So I do whatever pleases him. Sometimes you feel as if you did something wrong..don't think that! It is the damn cancer affecting the mood! I hate cancer. Sorry had to vent a bit! If you need to vent I am here.

    Take care and check out some of the caregivers posts too.

    Thanks for listening.
    ~Kelly

    A loving man
    Kelly, yes you are right! My husband is a very loving man and very protective of me too I might add. I am so very thankful for that. I know there may be times his mood will change that, but for now I am counting my blessings for every moment of it. If you ever need to vent, know that I am here. We can exchange phone numbers if you like. I have found it's much easier to vent in this way. It protects me from getting too emotional. It seems so odd that I can write, text, email etc. and control my emotions than actually speaking directly with others. Don't misunderstand, you can contact me directly if you like. Don't forget to hold onto the good memories and let them get you through those "back off" times; that's what I do. There have been a few rough moments of him venting to me and I just say "you still love me though." He will reply to me and say "no doubt." I am enjoying his sweetness during such a hard time for him. I'm here if you need me. I usually check the site 3,4,5 times a day.

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