How do I cope?

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infoneeded
infoneeded Member Posts: 23
edited March 2014 in Caregivers #1
My husband has stage IV GBM. He was diagnosed May 1, 2009. My emotions are almost as bad as his. I am trying to cope with the cancer and the terrible prognosis. Then I have to deal with our kids 10,12 and 17. Now I am losing him due to his new discovery that our marriage is over and it is too late to fix it. (This came out of nowhere.) I don't know how much more I can take. First the cancer and now our closeness. He has been my best friend for 23 years. I have shared everything with him and have always been able to talk to him. Now when I need him most....he isn't there to talk to. I have wonderful friends but they can't take away the lonliness I feel.

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  • longingforhope
    longingforhope Member Posts: 60
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    There is hope
    My husband is one lymph node away from being stage 4 and we also have been married 23 yrs and together for 31 years. Cancer can take away the closeness you once had and destroy you and your family unless you start fighting it.

    I'm going out on a limb and assuming your hub is freaked out bc of the cancer and is going through something similar to a mid-life crisis which is fairly normal. He now realizes he isn't immortal and his time is short but what he doesn't realize is there are teaching hospitals trying all kinds of new things and already being stage 4 he will more than likely qualify. There is hope and he just needs to go through the first steps of grief then start fighting.

    As for you I'm very sorry because you are right you have to deal with you emotions and the kids and deal with Drs., insurance companies, hospitals etc. Being the care giver is the worst it's a never ending, thankless job but there is a special place in Heaven for us caregivers.

    Know that you aren't alone and there are alot of us in the same situation and we are here to listen. Join us in the chatroom, it really does help.

    Take care and you will be in my prayers.

    Hope
  • MOE58
    MOE58 Member Posts: 589 Member
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    caregivers are a must
    I am so sorry you are having to deal with this, I have only been married to my husband for 3 year on the 21st of this month, but have been together 7, I have had my hands full since the day we found out. I didn't think I could do it, but I have so far, I don't know if you have read my posts under esophogeal cancer but I have basically gave stories from day one, I agree with longingforhope, you need to visit the chat room it gives you so much relief i too was very new in may and didn't know what i was going to do i signed into the chat room it helps alot, we talk, we laugh we cry and we talk about silly things it helps the stress.

    I would be glad to help you in anyway I can my husband just came home from surgery and i have walked alot of shoes

    Lori aka MOE
  • sue Siwek
    sue Siwek Member Posts: 279
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    yes, your husband is afraid.
    yes, your husband is afraid. on top of that i am certain the he is on the steroid decadron. this causes all kinds of problems. it is necessary to control the tumor while he receives treatment. my husband was on it nearly 10 years ago and it was terrible. they are agitated and cranky it will pass once he is off the steroid. get yourself some help and if he will go that would be good too. the first place to seek help would be your primary care doctor or the doctors that are treating you husbands tumor. most hospitals and clinics have support for both the patient and the family. you must become assertive and ask for what you need.
  • terato
    terato Member Posts: 375
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    Your "phoenix moment" will come!
    info,

    When my wife and caregiver left, I was devastated. I literally could not get off the floor for two days. However, with time and counseling, I became stronger, doing things to make myself stronger, while providing some enjoyment in my new life. I call this a "phoenix moment", that time when we rise from the emotional ashes our lives had become to new happier ones.

    Right now, you can't imagine your life getting better, but you don't know about the letter, e-mail, phone call, or chance meeting that will change your life for the better. Please be hopeful for the opportunities that have yet to be coming your way.

    Love and Courage!

    Rick
  • infoneeded
    infoneeded Member Posts: 23
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    terato said:

    Your "phoenix moment" will come!
    info,

    When my wife and caregiver left, I was devastated. I literally could not get off the floor for two days. However, with time and counseling, I became stronger, doing things to make myself stronger, while providing some enjoyment in my new life. I call this a "phoenix moment", that time when we rise from the emotional ashes our lives had become to new happier ones.

    Right now, you can't imagine your life getting better, but you don't know about the letter, e-mail, phone call, or chance meeting that will change your life for the better. Please be hopeful for the opportunities that have yet to be coming your way.

    Love and Courage!

    Rick

    Thank you everyone. I have
    Thank you everyone. I have tried to get into the chat rooms. I get online at such strange times there usually isn't anyone on. Yes he is on Decadron. He has been tapering off. I agree he is afraid. He also likes to be in control and he has no control over his cancer. Sometimes I think he is in denial. I know he is in denial. He won't even say the word cancer. We just refer to his "illness". Tomorrow we go for his MRI, blood work and consultation on his new treatment that will start Thursday. I just pray we have good news. I don't know how he would handle bad news. I'm afraid he will stop fighting. He has never been sick a day in his life and then when he does get sick it's stage IV cancer. He hates pills, drs and needles. He can't understand that all the things he hates are now a part of his life forever. If he feels they aren't doing him any good he won't take them at all.


    Chrissy
  • MichelleP
    MichelleP Member Posts: 254
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    Thank you everyone. I have
    Thank you everyone. I have tried to get into the chat rooms. I get online at such strange times there usually isn't anyone on. Yes he is on Decadron. He has been tapering off. I agree he is afraid. He also likes to be in control and he has no control over his cancer. Sometimes I think he is in denial. I know he is in denial. He won't even say the word cancer. We just refer to his "illness". Tomorrow we go for his MRI, blood work and consultation on his new treatment that will start Thursday. I just pray we have good news. I don't know how he would handle bad news. I'm afraid he will stop fighting. He has never been sick a day in his life and then when he does get sick it's stage IV cancer. He hates pills, drs and needles. He can't understand that all the things he hates are now a part of his life forever. If he feels they aren't doing him any good he won't take them at all.


    Chrissy

    Chrissy, My husband will not
    Chrissy,

    My husband will not discuss his condition much with me either. We also do not use the "c" word. When we go to the doctors he always reminds me not to ask about prognosis. This I have to discuss alone with the doctors. At first I thought and was advised by others to "make him talk about it". Well, I have since realized that no, I'm not going to do that. I believe that he "knows already". I also believe that having a positive attitude is critical in their recovery. So, I do everything I can to keep things "up beat" for him and if I have to mention the "condition" in any small way, I end my statement with something positive. It's hard on me yes, having to keep so much information bottled up inside of me, but I ask myself, what good would it do him to force this conversation? None. I have no doubt that some here will disagree with me, so following this thread should be interesting. (Soccerfreaks....I'm ducking now)

    As far as the Decadron, yes I've heard it indeed does cause a lot of personality changes. He'll probably calm down as he is tapered off them.

    Good luck to you and please let us know how your doing!
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    MichelleP said:

    Chrissy, My husband will not
    Chrissy,

    My husband will not discuss his condition much with me either. We also do not use the "c" word. When we go to the doctors he always reminds me not to ask about prognosis. This I have to discuss alone with the doctors. At first I thought and was advised by others to "make him talk about it". Well, I have since realized that no, I'm not going to do that. I believe that he "knows already". I also believe that having a positive attitude is critical in their recovery. So, I do everything I can to keep things "up beat" for him and if I have to mention the "condition" in any small way, I end my statement with something positive. It's hard on me yes, having to keep so much information bottled up inside of me, but I ask myself, what good would it do him to force this conversation? None. I have no doubt that some here will disagree with me, so following this thread should be interesting. (Soccerfreaks....I'm ducking now)

    As far as the Decadron, yes I've heard it indeed does cause a lot of personality changes. He'll probably calm down as he is tapered off them.

    Good luck to you and please let us know how your doing!

    Decadron
    This is from a site called chemocare.com:

    [beginning of quote ]

    What Decadron Is Used For:

    •As an anti-inflammatory medication. Decadron relieves inflammation in various parts of the body. It is used specifically to decrease swelling (edema), associated with tumors of the spine and brain, and to treat eye inflammation.
    •To treat or prevent allergic reactions.
    •As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.
    •As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.
    •To treat nausea and vomiting associated with some chemotherapy drugs.
    •Used to stimulate appetite in cancer patients with severe appetite problems.
    •Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands).

    The following Decadron side effects are common (occurring in greater than 30%) for patients taking Decadron:

    •Increased appetite
    •Irritability
    •Difficulty sleeping (insomnia)
    •Swelling in your ankles and feet (fluid retention)
    •Heartburn
    •Muscle weakness
    •Impaired wound healing
    •Increased blood sugar levels. Persons with Diabetes may need to have blood sugar levels monitored more closely and possible adjustments to diabetes medications.
    The following are less common Decadron side effects (occurring in >10%) for patients receiving Decadron:

    •Headaches
    •Dizziness
    •Mood swings
    •Cataracts and bone thinning (with long-term use)
    This list includes common and less common side effects for individuals taking Decadron. Decadron side effects that are very rare, occurring in less than 10% of patients, are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.

    How Decadron Works:

    Corticosteroids are naturally produced by the adrenal gland in the body. Corticosteroids influence the functioning of most of the body's systems (heart, immune, muscles and bones, endocrine and nervous system). They exert a wide array of effects including effects on the metabolism of carbohydrates, protein and fats. They help to maintain balance of fluids and electrolytes.

    Decadron is classified as a corticosteroid (more precisely a glucocorticosteroid), and has many uses in the treatment of cancer.

    One way that it works is to decrease inflammation (swelling). It does this by preventing infection- fighting white blood cells (polymorphonuclear leukocytes) from traveling to the area of swelling in your body. (This is why you are more prone to infection while taking steroids). Taking advantage of the anti-inflammatory properties of the medication, corticosteroids are used to decrease the swelling around tumors. For example, by decreasing swelling around tumors in the spine, brain, or bone, it can decrease the pressure of the tumor on nerve endings and relieve pain or other symptoms caused by the pressing tumor.

    Another way Decadron works is by altering the body's normal immune system responses. Corticosteroids are used to treat certain conditions that effect the immune system such as aplastic anemia (AA), Immune Thrombocytopenia Purpura (ITP), Thrombotic Thrombocytopenia Purpura (TTP), or hemolytic anemia.

    In addition, it is thought that corticosteroids may help in the treatment of patients with blood disorders, such as multiple myeloma. Corticosteroids may work by causing programmed cell death (apoptosis) of certain cells, which may help to fight your disease.

    Decadron is also used in the short-term treatment of nausea caused by chemotherapy. How it does this is not fully understood. It also has been used to stimulate appetite for patients with severe appetite problems.

    Corticosteroids are used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands).

    Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

    [end of quote]

    Decadron was a part of my treatment both times I had chemotherapy. I was told, in my case, that it was to reduce or eliminate nausea. The first time, in combination with cisplatin, it did not do that job. I became sick as a dog (or sicker, I haven't asked any dogs lately how sick they get). The second time, in combination with carboplatin and taxol, it may or may not have worked (such is the nature of these things: when they don't work we know; when they DO work, who's to say if that's the reason?).

    You will note from the description provided that decadron may indeed cause mood swings and personality shifts. I know that in my own case, my wife actually enjoyed the 'mood swing': decadron was like speed or something of the sort for me: I would stay up all night cleaning, doing laundry, watering the plants, inside and out, would probably have painted every house in the neighborhood if allowed to.

    Clearly, it does not affect everyone the same way. I would strongly suggest a talk with the doctor, to let him or her know what you think is happening in terms of a personality change, after first discussing same with significant other (surprises are unwelcome, trust me, as we do tend to be tense at this point).

    I think Michelle's idea re the reaction to decadron (and other drugs as well) is well-thought. I also like another respondent's idea about 'mid-life crisis'. I have written of this myself (in here): being told of your mortality is not so dissimilar to reaching to a certain point in life, the big 4-0, the big 5-0. This does not excuse the behavior, but may explain it better than anything (or maybe in conjunction with the drugs and other treatment).

    Being told that you are dying, or may be dying, tends to make you reevaluate your life and what you've done and how you have been valuable to society and even, for some folks, if they have lived all of the dreams they had for themselves when they were 16 or 18 or 21.

    Only the luckiest of us, I think, can say that we have led the life we truly expected to live, and that we have done much to achieve our dreams and contribute to humanity (if that is on our list).

    All of this by way of saying that your husband's behavior, while sad for you, and for him as well, I am fairly certain, is not abnormal.

    Joint counseling may help. Individual counseling for him (and for you) may help. Perhaps, as others have suggested, it is something to ride out, hoping that it gets better by itself. I do not prescribe to such a notion, but understand that we each have to deal with these things in the ways we can best deal with them.

    Finally, as still another respondent suggested, I think (we can't read them all while we respond to you), it may very well be that your significant other is trying to be heroic and noble and sacrificial. Those of us who are survivors really do, the best of us, want to avoid burdening our loved ones as much as possible, and sometimes that means that we try to push them away.

    That is not the best thing we can do, usually, as you express yourself, but sometimes we don't know better.

    I wish you both the best.

    Take care,

    Joe
  • infoneeded
    infoneeded Member Posts: 23
    Options

    Decadron
    This is from a site called chemocare.com:

    [beginning of quote ]

    What Decadron Is Used For:

    •As an anti-inflammatory medication. Decadron relieves inflammation in various parts of the body. It is used specifically to decrease swelling (edema), associated with tumors of the spine and brain, and to treat eye inflammation.
    •To treat or prevent allergic reactions.
    •As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.
    •As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.
    •To treat nausea and vomiting associated with some chemotherapy drugs.
    •Used to stimulate appetite in cancer patients with severe appetite problems.
    •Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands).

    The following Decadron side effects are common (occurring in greater than 30%) for patients taking Decadron:

    •Increased appetite
    •Irritability
    •Difficulty sleeping (insomnia)
    •Swelling in your ankles and feet (fluid retention)
    •Heartburn
    •Muscle weakness
    •Impaired wound healing
    •Increased blood sugar levels. Persons with Diabetes may need to have blood sugar levels monitored more closely and possible adjustments to diabetes medications.
    The following are less common Decadron side effects (occurring in >10%) for patients receiving Decadron:

    •Headaches
    •Dizziness
    •Mood swings
    •Cataracts and bone thinning (with long-term use)
    This list includes common and less common side effects for individuals taking Decadron. Decadron side effects that are very rare, occurring in less than 10% of patients, are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.

    How Decadron Works:

    Corticosteroids are naturally produced by the adrenal gland in the body. Corticosteroids influence the functioning of most of the body's systems (heart, immune, muscles and bones, endocrine and nervous system). They exert a wide array of effects including effects on the metabolism of carbohydrates, protein and fats. They help to maintain balance of fluids and electrolytes.

    Decadron is classified as a corticosteroid (more precisely a glucocorticosteroid), and has many uses in the treatment of cancer.

    One way that it works is to decrease inflammation (swelling). It does this by preventing infection- fighting white blood cells (polymorphonuclear leukocytes) from traveling to the area of swelling in your body. (This is why you are more prone to infection while taking steroids). Taking advantage of the anti-inflammatory properties of the medication, corticosteroids are used to decrease the swelling around tumors. For example, by decreasing swelling around tumors in the spine, brain, or bone, it can decrease the pressure of the tumor on nerve endings and relieve pain or other symptoms caused by the pressing tumor.

    Another way Decadron works is by altering the body's normal immune system responses. Corticosteroids are used to treat certain conditions that effect the immune system such as aplastic anemia (AA), Immune Thrombocytopenia Purpura (ITP), Thrombotic Thrombocytopenia Purpura (TTP), or hemolytic anemia.

    In addition, it is thought that corticosteroids may help in the treatment of patients with blood disorders, such as multiple myeloma. Corticosteroids may work by causing programmed cell death (apoptosis) of certain cells, which may help to fight your disease.

    Decadron is also used in the short-term treatment of nausea caused by chemotherapy. How it does this is not fully understood. It also has been used to stimulate appetite for patients with severe appetite problems.

    Corticosteroids are used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands).

    Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

    [end of quote]

    Decadron was a part of my treatment both times I had chemotherapy. I was told, in my case, that it was to reduce or eliminate nausea. The first time, in combination with cisplatin, it did not do that job. I became sick as a dog (or sicker, I haven't asked any dogs lately how sick they get). The second time, in combination with carboplatin and taxol, it may or may not have worked (such is the nature of these things: when they don't work we know; when they DO work, who's to say if that's the reason?).

    You will note from the description provided that decadron may indeed cause mood swings and personality shifts. I know that in my own case, my wife actually enjoyed the 'mood swing': decadron was like speed or something of the sort for me: I would stay up all night cleaning, doing laundry, watering the plants, inside and out, would probably have painted every house in the neighborhood if allowed to.

    Clearly, it does not affect everyone the same way. I would strongly suggest a talk with the doctor, to let him or her know what you think is happening in terms of a personality change, after first discussing same with significant other (surprises are unwelcome, trust me, as we do tend to be tense at this point).

    I think Michelle's idea re the reaction to decadron (and other drugs as well) is well-thought. I also like another respondent's idea about 'mid-life crisis'. I have written of this myself (in here): being told of your mortality is not so dissimilar to reaching to a certain point in life, the big 4-0, the big 5-0. This does not excuse the behavior, but may explain it better than anything (or maybe in conjunction with the drugs and other treatment).

    Being told that you are dying, or may be dying, tends to make you reevaluate your life and what you've done and how you have been valuable to society and even, for some folks, if they have lived all of the dreams they had for themselves when they were 16 or 18 or 21.

    Only the luckiest of us, I think, can say that we have led the life we truly expected to live, and that we have done much to achieve our dreams and contribute to humanity (if that is on our list).

    All of this by way of saying that your husband's behavior, while sad for you, and for him as well, I am fairly certain, is not abnormal.

    Joint counseling may help. Individual counseling for him (and for you) may help. Perhaps, as others have suggested, it is something to ride out, hoping that it gets better by itself. I do not prescribe to such a notion, but understand that we each have to deal with these things in the ways we can best deal with them.

    Finally, as still another respondent suggested, I think (we can't read them all while we respond to you), it may very well be that your significant other is trying to be heroic and noble and sacrificial. Those of us who are survivors really do, the best of us, want to avoid burdening our loved ones as much as possible, and sometimes that means that we try to push them away.

    That is not the best thing we can do, usually, as you express yourself, but sometimes we don't know better.

    I wish you both the best.

    Take care,

    Joe

    Joe,
    Thank you so much for

    Joe,

    Thank you so much for your thoughts. It is so hard to understand what my husband is feeling or thinking. I will never even try. We have already gone through a lot of the stages you have listed. He is 42 and I believe is still having a mid life crisis. He has been having one since he turned 40. What is scary is when he turned 40 he announced his life was almost over. He had no explanation just that he didn't have many more years.

    One of the first things he said when he finally talked was he hadn't accomplished anything in his life. I had to remind him of our three beautiful children. He also has a booming business. He then started telling me what I would be doing once he was gone and that my life would be great with my new husband. Even informing me what I could do with the money from his insurance policy and how my new husband and I would spend it. Talk about sticking a knife in my heart.

    I hope he isn't trying to be heroic, noble and sacrificisl. It is like grieving for him twice. Knowing that his life is being shortened and being pushed away when all you want to do is make things as easy as you can and help him through all that life is bringing. He might have the tumor but we are in this together and we will fight it together and if I have to do the majority of the work then that is okay just don't push me away because that is more unbearable than the illness itself.

    As for the counseling. He is a very quiet individual. He has never been one to share his feelings. I have tried and tried to get him to talk to someone anyone but he won't. He hates the fact that all friends and family always ask how are you feeling and is there anything we can do. He is trying to forget about it but it is always hitting him in the face. I understand how he feels. I don't answer the phone anymore. Unfortunately counseling is out of the picture.

    Again I thank you for all you shared. The unknown is so hard to deal with. I wish I could find a book that told me step by step what I could expect from him. If I can prepare myself then I can cope so much better.

    Best Wishes,
    Chrissy
  • Amy41
    Amy41 Member Posts: 13
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    Mid Life Crisis - but alas not Mid Life
    http://www.nytimes.com/2009/08/02/fashion/02love.html

    I read this in the NY Times last week - Just say NO - you love him - and he is not allowed to pull that crap on you - whatever time is left even if he is being a PIA be it from medication or what ever you and the kids are sticking around and making each day count - be it watching a bad movie or being happy about chocolate chip cookies - some days will suck - others will be better.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    Joe,
    Thank you so much for

    Joe,

    Thank you so much for your thoughts. It is so hard to understand what my husband is feeling or thinking. I will never even try. We have already gone through a lot of the stages you have listed. He is 42 and I believe is still having a mid life crisis. He has been having one since he turned 40. What is scary is when he turned 40 he announced his life was almost over. He had no explanation just that he didn't have many more years.

    One of the first things he said when he finally talked was he hadn't accomplished anything in his life. I had to remind him of our three beautiful children. He also has a booming business. He then started telling me what I would be doing once he was gone and that my life would be great with my new husband. Even informing me what I could do with the money from his insurance policy and how my new husband and I would spend it. Talk about sticking a knife in my heart.

    I hope he isn't trying to be heroic, noble and sacrificisl. It is like grieving for him twice. Knowing that his life is being shortened and being pushed away when all you want to do is make things as easy as you can and help him through all that life is bringing. He might have the tumor but we are in this together and we will fight it together and if I have to do the majority of the work then that is okay just don't push me away because that is more unbearable than the illness itself.

    As for the counseling. He is a very quiet individual. He has never been one to share his feelings. I have tried and tried to get him to talk to someone anyone but he won't. He hates the fact that all friends and family always ask how are you feeling and is there anything we can do. He is trying to forget about it but it is always hitting him in the face. I understand how he feels. I don't answer the phone anymore. Unfortunately counseling is out of the picture.

    Again I thank you for all you shared. The unknown is so hard to deal with. I wish I could find a book that told me step by step what I could expect from him. If I can prepare myself then I can cope so much better.

    Best Wishes,
    Chrissy

    Depression
    It sounds to me, Chrissy, and I speak from some personal experience here and certainly not professional, that your husband may be suffering from that great maw, the enormous hole in the soul, if you will, that is depression.

    Depression is not uncommon among those who have been given a cancer diagnosis, but folks usually go through stages and come out of it. Your husband, it sounds like, has had this issue precedent to the cancer.

    When he cannot consider his business successes, his happy family life, the children he has brought into this world and I imagine helped to raise so far, as reasons for happiness, I would venture that he has what I call, again, a hole in the soul.

    He seeks fulfillment that he has not been able to find in family or career. This is just conjecture, but I would suggest that hub see a therapist. If he is anything like most of us, of course, he will object to that. But it will do him a world of good and, by extension, be of value to you and the family as well.

    Therapy, Chrissy, will not necessarily make him change his mind about the way his life has gone and what direction he wants it to go with the life he has left, I must warn you, but it will at least help him to sort out his emotions, to separate his fears and concerns about cancer and mortality from this other thing, if it is there, this sense of having accomplished nothing of value in life, as it seems he is saying.

    I took the time to read the article posted by Amy, and while I applaud her efforts and the thought behind them, I didn't really get anything from that article that I think would apply here. BUT, I read it from the other side of the 'river', from the same perspective your husband is probably coming from. Perhaps it will be of some use to you as you try to work this out.

    Best wishes to you, your husband and your family.

    Take care,

    Joe
  • pattynonews
    pattynonews Member Posts: 176
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    I know how you feel, My love
    I know how you feel, My love has cancer stage 4 and not sure of his prognosis, They tell us it will never go in to remission and they are just trying to make it not spread, I sometimes feel Jack is pushing away, but it is cuz he knows he is dying and he is in pain, but we deal with it together, I try to put myslf in his place but Im so scared what is going to happen when he is gone, and all I can do it just focus on taking care of him and being blessed to have one more day with him, The future is to hard to think about, so the way I cope is sharing my feeling with people who have been there are going through the same thing , yea I have my friends, but they don't know what is truly going on they are just looking from the outside in, If you need to share im here

    Patty
  • micus52
    micus52 Member Posts: 2
    Options

    I know how you feel, My love
    I know how you feel, My love has cancer stage 4 and not sure of his prognosis, They tell us it will never go in to remission and they are just trying to make it not spread, I sometimes feel Jack is pushing away, but it is cuz he knows he is dying and he is in pain, but we deal with it together, I try to put myslf in his place but Im so scared what is going to happen when he is gone, and all I can do it just focus on taking care of him and being blessed to have one more day with him, The future is to hard to think about, so the way I cope is sharing my feeling with people who have been there are going through the same thing , yea I have my friends, but they don't know what is truly going on they are just looking from the outside in, If you need to share im here

    Patty

    MM cancer
    Hi Patty & Jack ~

    I was diagnosed with Multiple Myeloma in July 2003: 5 diff chemotherapies, 6 hospital stays, 2 stem-cell transplants .. I am still alive and .. I love drums (along with The Ventures since 1962). Would you like to talk or chat? Please message me or email me at michael_kuhn2001@yahoo.com . My main problem now is my adverse immune system due to the chemotherapies. I have been on Revlimid now for 27 months. Best wishes to you! M I K E
  • onlyhuman
    onlyhuman Member Posts: 99
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    Thank you everyone. I have
    Thank you everyone. I have tried to get into the chat rooms. I get online at such strange times there usually isn't anyone on. Yes he is on Decadron. He has been tapering off. I agree he is afraid. He also likes to be in control and he has no control over his cancer. Sometimes I think he is in denial. I know he is in denial. He won't even say the word cancer. We just refer to his "illness". Tomorrow we go for his MRI, blood work and consultation on his new treatment that will start Thursday. I just pray we have good news. I don't know how he would handle bad news. I'm afraid he will stop fighting. He has never been sick a day in his life and then when he does get sick it's stage IV cancer. He hates pills, drs and needles. He can't understand that all the things he hates are now a part of his life forever. If he feels they aren't doing him any good he won't take them at all.


    Chrissy

    Hang in there
    Hi Chrissy
    My husband was diagnosed with stage IV GBM in Mar 09. He turned 50 in May 09 and until a few weeks ago he refused to acknowledge what he is facing. I am still not allowed to use the word GBM but as of a few weeks ago he has acknowledged my role as his key support in this battle he faces. We have 2 girls aged 3 and 9 and in August we took them away for a holiday for a week and since then he has been a lot more like the man I love not the insensitive person the tumour was turning him into. Whether its the meds or the condition it does not really matter, fact is life is different after a diagnosis of cancer. My hubby keeps saying he only has a year left. This initially upset me but now I reckon that as long as he keeps saying he has a year there is no limit to how long he'll be here (i.e. as long as he hasn't started a count down, we're ok).
    His third lot of chemo on day 2 he decided he'd had enough and initially refused to continue. I screamed, then threatened and then begged and eventually he took his meds. But now I am very aware that there will come a point when the choice will have to be his as to how much he wants to put his body through. I am beginning to understand that sometimes quality of life is more important than quantity. We are not giivng up, just learning to prioritise. I wish you and your husband all the best.