Mesothelioma

24

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  • Em
    Em Member Posts: 36
    #22
    augigi said:

    She hasn't had any chemo
    She hasn't had any chemo since March, because she had nausea and now the chest infection. She was terrible last night so I called the palliative care nurses and they organized for me to take her into hospital today. Then she had a fall on the kitchen floor while we were getting ready to go.. then she was just apologizing for scaring me.

    I am just worried she won't come home again, she is starting to say that she's so tired and she's sick of this and ready to go. I'm not ready, I'm not ready.

    Mesothelioma
    Hi Jen,

    I understand completely how you are feeling, no one is ever ready, and we must continue to do the best we can for our loved ones. In hind sight, I wish we would have had Jim continue on a different chemo therapy, rather then let him go with out any treatment for 30 days in order to qualify for a clinical trial. I wish the doctor in our small town would have advised against it, but he didn't, instead he encouraged it. Your poor mum, Jim had a few falls too. Keep praying, and take care of yourself too Jen, we are not any good to them if we don't. I thanked God I made it a year without being sick to take care of him. I am just really numb right now, missing him very much. Please keep in touch so I know how you are doing Jen. And you will be amazed how strong a woman you are, your mum needs you this way too.
  • augigi
    augigi Member Posts: 89
    #23
    Em said:

    Mesothelioma
    Hi Jen,

    I understand completely how you are feeling, no one is ever ready, and we must continue to do the best we can for our loved ones. In hind sight, I wish we would have had Jim continue on a different chemo therapy, rather then let him go with out any treatment for 30 days in order to qualify for a clinical trial. I wish the doctor in our small town would have advised against it, but he didn't, instead he encouraged it. Your poor mum, Jim had a few falls too. Keep praying, and take care of yourself too Jen, we are not any good to them if we don't. I thanked God I made it a year without being sick to take care of him. I am just really numb right now, missing him very much. Please keep in touch so I know how you are doing Jen. And you will be amazed how strong a woman you are, your mum needs you this way too.

    Good news today - Mum came
    Good news today - Mum came home from hospital. Still weak, but a thousand percent better after the treatment for her chest infection. Hope things are okay with you.
  • Em
    Em Member Posts: 36
    #24
    augigi said:

    Good news today - Mum came
    Good news today - Mum came home from hospital. Still weak, but a thousand percent better after the treatment for her chest infection. Hope things are okay with you.

    Mesothelioma
    Jen, that is wonderful news, I am so happy for both you and your mum. I pray that she continues to improve. As I mentioned before women seem to do better then men with this disease, so we will continue to think positive and have hope and hope soon they will find a cure for mesothelioma. God bless you and mum.

    Em
  • augigi
    augigi Member Posts: 89
    #25
    Em said:

    Mesothelioma
    Jen, that is wonderful news, I am so happy for both you and your mum. I pray that she continues to improve. As I mentioned before women seem to do better then men with this disease, so we will continue to think positive and have hope and hope soon they will find a cure for mesothelioma. God bless you and mum.

    Em

    Thanks Em. It's very kind of
    Thanks Em. It's very kind of you to worry about my mum when you've lost your hubby. How are you doing?
  • Em
    Em Member Posts: 36
    #26
    augigi said:

    Thanks Em. It's very kind of
    Thanks Em. It's very kind of you to worry about my mum when you've lost your hubby. How are you doing?

    Mesothelioma
    Hi Jen,

    Thank you for your email, I am doing ok, have good days and bad days, sadly most have been not too good lately. I miss my Jim so very much. I just don't know what I am going to do next, I miss his voice and every thing about him. I still am numb, cannot believe it has happened. I pray your mum is still doing better Jen. You take good care of yourself too, we need excellent nurses like yourself.
  • augigi
    augigi Member Posts: 89
    #27
    Em said:

    Mesothelioma
    Hi Jen,

    Thank you for your email, I am doing ok, have good days and bad days, sadly most have been not too good lately. I miss my Jim so very much. I just don't know what I am going to do next, I miss his voice and every thing about him. I still am numb, cannot believe it has happened. I pray your mum is still doing better Jen. You take good care of yourself too, we need excellent nurses like yourself.

    It's about a month since Mum
    It's about a month since Mum came home from hospital after the chest infection, and she's back in right now, this time in the palliative care place for management of pain meds. She was up to such high doses of oxycontin that she was totally loopy and hallucinating, but still in pain. So they stopped that and started morphine and some ketamine for the bone pain. Only been 2 full days so far, but she already seems a lot more clearminded and painfree, so here's hoping. The nurses did tell us this palliative care dr is phenomenal with pain management, so hopefully he lives up to the hype.

    I don't think it will be that long though.. the decline is clear to see in terms of how little mum can do now. I don't want to lose her, but I can see that it's getting to the point where the quality will be so miserable that she would rather go. Sometimes I realize that I've already lost my mum.. this anxious, frightened, old lady with a walker and oxygen can't be my mum, my bossy, bolshy mum who was a force of nature until this sudden diagnosis just over a year ago. It's just not fair.
  • Em
    Em Member Posts: 36
    #28
    augigi said:

    It's about a month since Mum
    It's about a month since Mum came home from hospital after the chest infection, and she's back in right now, this time in the palliative care place for management of pain meds. She was up to such high doses of oxycontin that she was totally loopy and hallucinating, but still in pain. So they stopped that and started morphine and some ketamine for the bone pain. Only been 2 full days so far, but she already seems a lot more clearminded and painfree, so here's hoping. The nurses did tell us this palliative care dr is phenomenal with pain management, so hopefully he lives up to the hype.

    I don't think it will be that long though.. the decline is clear to see in terms of how little mum can do now. I don't want to lose her, but I can see that it's getting to the point where the quality will be so miserable that she would rather go. Sometimes I realize that I've already lost my mum.. this anxious, frightened, old lady with a walker and oxygen can't be my mum, my bossy, bolshy mum who was a force of nature until this sudden diagnosis just over a year ago. It's just not fair.

    Mesothelioma
    Dearest Jen,

    It most certainly is not fair, and there is not a day that goes by when I feel that justice has not been met with the manufactures and distributers of asbestos, and also why more funds are not available to find a cure. My heart goes out to you and your beloved mum. I am so glad you have a good palliative care doctor, I was not too fond of what we had available here for his care. It all seemed to be so routine to them, it was just so frustrating. The good thing (if there is such a thing with this disease), is the mophrine I belive helped Jim the most. It also helped him to have a peaceful death. My doctor back in Michigan told me mophrine helps the body to relax and I was so grateful he wasn't in duress. I just miss him so much, I can't tell you enough. You and your mum and sisters are all in my prayers Jen.

    Love,
    Em
  • augigi
    augigi Member Posts: 89
    #29
    Em said:

    Mesothelioma
    Dearest Jen,

    It most certainly is not fair, and there is not a day that goes by when I feel that justice has not been met with the manufactures and distributers of asbestos, and also why more funds are not available to find a cure. My heart goes out to you and your beloved mum. I am so glad you have a good palliative care doctor, I was not too fond of what we had available here for his care. It all seemed to be so routine to them, it was just so frustrating. The good thing (if there is such a thing with this disease), is the mophrine I belive helped Jim the most. It also helped him to have a peaceful death. My doctor back in Michigan told me mophrine helps the body to relax and I was so grateful he wasn't in duress. I just miss him so much, I can't tell you enough. You and your mum and sisters are all in my prayers Jen.

    Love,
    Em

    Thanks Em. It's so good to
    Thanks Em. It's so good to hear from you, I have been thinking of you.
  • avg00
    avg00 Member Posts: 1
    #30
    augigi said:

    Thanks Em. It's so good to
    Thanks Em. It's so good to hear from you, I have been thinking of you.

    Father with Mesothelioma
    Hello ladies! I've read your entire post and like you surprised there are not more folks posting about this cancer. As you both have mentioned I also have a lot of anger around this whole mess. My father was diagnosed with Pleural mesothelioma last July. Last September he went through a major surgery of removal of the lung. We all had very high hopes until earlier this month it was found that the cancer had spread to his stomach lining and the other lung. He just recently started his chemo and is having a rough time right now with no appetite and very weak. I am not sure if what he is experiencing is due to the treatment or the cancer, perhaps both. But wanted to thank you both for the information you have given on the different options given to help alleviate symptoms. I've written those down and will be discussing this with my mom later today. Em, I am very sorry to hear about your husband. Jen I hope your mother is doing okay.

    Best wishes,
    Adriana
  • Em
    Em Member Posts: 36
    #31
    augigi said:

    Thanks Em. It's so good to
    Thanks Em. It's so good to hear from you, I have been thinking of you.

    mesothelioma
    Please keep in touch with me Jen, I care and want to know how your mum and you both are doing.

    Blessings and love,
    Em
  • Em
    Em Member Posts: 36
    #32
    avg00 said:

    Father with Mesothelioma
    Hello ladies! I've read your entire post and like you surprised there are not more folks posting about this cancer. As you both have mentioned I also have a lot of anger around this whole mess. My father was diagnosed with Pleural mesothelioma last July. Last September he went through a major surgery of removal of the lung. We all had very high hopes until earlier this month it was found that the cancer had spread to his stomach lining and the other lung. He just recently started his chemo and is having a rough time right now with no appetite and very weak. I am not sure if what he is experiencing is due to the treatment or the cancer, perhaps both. But wanted to thank you both for the information you have given on the different options given to help alleviate symptoms. I've written those down and will be discussing this with my mom later today. Em, I am very sorry to hear about your husband. Jen I hope your mother is doing okay.

    Best wishes,
    Adriana

    Mesothelioma
    Welcome Adriana, please keep us informed how your father is doing. Where did he have his surgery? Jim was supposed to try for this too, but the cancer had spead to his stomach, so he did a clinical trial at NIH which I firmly believe extended his life at least five months. Then he had chemotherapy here in Carlisle, PA. Do you know how your father was exposed to asbestos?

    If you have any thoughts or questions, feel free to write to us. God Bless you and your family.

    Emily
  • augigi
    augigi Member Posts: 89
    #33
    Em said:

    mesothelioma
    Please keep in touch with me Jen, I care and want to know how your mum and you both are doing.

    Blessings and love,
    Em

    Hi Em :)
    Sorry for the
    Hi Em :)

    Sorry for the delay, just been busy. I have my sister and her kids in from interstate so we have had the whole family together in one city which is very rare. We were able to bring mum out yesterday for a few hours to take the kids bowling which she seemed to enjoy watching.

    She was great for about a week after coming home on the new pain regime, then has gone very anxious and panicky the past few days. I have her booked in to a clinical hypnotherapist this week to see if it helps the anxiety/panic attacks at all. Physically she's not that bad (relatively), but the anxiety is crippling.

    Adriane, it sounds odd to say "welcome" to this unfortunate group :( Sorry to hear about your dad.
  • Em
    Em Member Posts: 36
    #34
    augigi said:

    Hi Em :)
    Sorry for the
    Hi Em :)

    Sorry for the delay, just been busy. I have my sister and her kids in from interstate so we have had the whole family together in one city which is very rare. We were able to bring mum out yesterday for a few hours to take the kids bowling which she seemed to enjoy watching.

    She was great for about a week after coming home on the new pain regime, then has gone very anxious and panicky the past few days. I have her booked in to a clinical hypnotherapist this week to see if it helps the anxiety/panic attacks at all. Physically she's not that bad (relatively), but the anxiety is crippling.

    Adriane, it sounds odd to say "welcome" to this unfortunate group :( Sorry to hear about your dad.

    Mesothelioma
    It is so good to hear from you Jen, thank you for writing!

    Is your family here in the states? There are fireworks going off as I type this celebrating the 4th of July.

    In the hospice package they had Ativan which helped Jim with restlessness, it may be in the family of xanax, both I believe are to help with anxiety. Is your mum receiving any medication like that? There was also Haldol in the hospice kit, but we were reluctant to use it, his sister and I had concerns about the affects of that drug. I am glad to hear that physically she is not too bad, in fact, that is very good news. I am trying to remember when your mum was diagnoised with this disease.

    Please keep in touch and let me know how you and your mum are doing, again it was really good to hear from you Jen.
  • augigi
    augigi Member Posts: 89
    #35
    Em said:

    Mesothelioma
    It is so good to hear from you Jen, thank you for writing!

    Is your family here in the states? There are fireworks going off as I type this celebrating the 4th of July.

    In the hospice package they had Ativan which helped Jim with restlessness, it may be in the family of xanax, both I believe are to help with anxiety. Is your mum receiving any medication like that? There was also Haldol in the hospice kit, but we were reluctant to use it, his sister and I had concerns about the affects of that drug. I am glad to hear that physically she is not too bad, in fact, that is very good news. I am trying to remember when your mum was diagnoised with this disease.

    Please keep in touch and let me know how you and your mum are doing, again it was really good to hear from you Jen.

    Hey Em. Yeah we tried
    Hey Em. Yeah we tried Ativan, but it seemed to make her more dopey and not help the anxiety that much. The doc suggested Xanax last week but mum doesn't want more drugs since she's already quite sleepy. Family is in Melbourne, Australia.

    Diagnosis was March 25th, 2009.

    Edit: Unfortunately she has got a lot worse in the last week, we thought maybe it was the drugs needing adjustment, but the palliative nurses seem to think it's just the beginning of the end. I suspect mum has another chest infection actually - she changed so suddenly, and has a cough and temperature so I think that might be that - that made her anxious and confused last time. We'll see.
  • Em
    Em Member Posts: 36
    #36
    augigi said:

    Hey Em. Yeah we tried
    Hey Em. Yeah we tried Ativan, but it seemed to make her more dopey and not help the anxiety that much. The doc suggested Xanax last week but mum doesn't want more drugs since she's already quite sleepy. Family is in Melbourne, Australia.

    Diagnosis was March 25th, 2009.

    Edit: Unfortunately she has got a lot worse in the last week, we thought maybe it was the drugs needing adjustment, but the palliative nurses seem to think it's just the beginning of the end. I suspect mum has another chest infection actually - she changed so suddenly, and has a cough and temperature so I think that might be that - that made her anxious and confused last time. We'll see.

    Mesothelioma
    HI Jen,

    I know the ativan and xanax both will make you tired, I do think the ativan helped Jim, that and morphine seemed to help him to relax. Ten days before he passed, he seemed to change suddenly, not too much of a cough, more lacking in strength, and no appetite. I think the most important thing to try and do is keep one comfortable, even if they may be more tired. I didn't want Jim to suffer and he didn't he died a peaceful death. I just miss him so much Jen, I still have not come to terms with this and wonder if I ever will. My prayers are with your beloved mum and you and your sisters. God bless and please keep in touch when you can.

    Love,
    Emily
  • augigi
    augigi Member Posts: 89
    #37
    Em said:

    Mesothelioma
    HI Jen,

    I know the ativan and xanax both will make you tired, I do think the ativan helped Jim, that and morphine seemed to help him to relax. Ten days before he passed, he seemed to change suddenly, not too much of a cough, more lacking in strength, and no appetite. I think the most important thing to try and do is keep one comfortable, even if they may be more tired. I didn't want Jim to suffer and he didn't he died a peaceful death. I just miss him so much Jen, I still have not come to terms with this and wonder if I ever will. My prayers are with your beloved mum and you and your sisters. God bless and please keep in touch when you can.

    Love,
    Emily

    Bad news, I'm afraid. Mum
    Bad news, I'm afraid. Mum had to go into the hospice unit on Thursday as she was very agitated and confused, also I thought she had an infection. Turns out she does have a urinary tract infection, but it doesn't really matter anymore. She is in a coma now and on a morphine drip, it's just a matter of hours to days. Honestly, although I will miss her more than anything, I am so glad I've had this past 8 months at home to spend with her, and she was so poorly now that it's really a relief to think she'll be out of pain. So sudden though - a week ago exactly she was at the bowling alley watching the grandkids.
  • augigi
    augigi Member Posts: 89
    #38
    augigi said:

    Bad news, I'm afraid. Mum
    Bad news, I'm afraid. Mum had to go into the hospice unit on Thursday as she was very agitated and confused, also I thought she had an infection. Turns out she does have a urinary tract infection, but it doesn't really matter anymore. She is in a coma now and on a morphine drip, it's just a matter of hours to days. Honestly, although I will miss her more than anything, I am so glad I've had this past 8 months at home to spend with her, and she was so poorly now that it's really a relief to think she'll be out of pain. So sudden though - a week ago exactly she was at the bowling alley watching the grandkids.

    Well, she lasted a few more
    Well, she lasted a few more days and passed away peacefully this morning at 6am, while I was sitting with her and holding her hand. It was very hard to watch her struggling to breathe and I feel immense relief that her struggle is over.
  • Em
    Em Member Posts: 36
    #39
    augigi said:

    Well, she lasted a few more
    Well, she lasted a few more days and passed away peacefully this morning at 6am, while I was sitting with her and holding her hand. It was very hard to watch her struggling to breathe and I feel immense relief that her struggle is over.

    Mesothelioma
    Oh Jen, I am so very sorry, my heart goes out to you and your family. It will be three months tomorrow my Jim passed, and I just miss him terribly. I believe Jim passed peacefully, while he was breathing with his mouth open, he did not appear to struggle, and that was a relief to me. If I remember correctly I believe your mum was around 68 or so, which is how old Jim was. We have friends who just commented yesterday, they still cannot believe this has happened to him. He was such a healthy stoic man all his life. I just cannot extend to you enough my sorrow and heartache for the loss of your beloved mum. Please continue to keep in touch so that I know you are doing ok. God Bless you for being such a loving, caring daughter, your mother was very blessed to have you.

    Love,
    Emily
  • augigi
    augigi Member Posts: 89
    #40
    Em said:

    Mesothelioma
    Oh Jen, I am so very sorry, my heart goes out to you and your family. It will be three months tomorrow my Jim passed, and I just miss him terribly. I believe Jim passed peacefully, while he was breathing with his mouth open, he did not appear to struggle, and that was a relief to me. If I remember correctly I believe your mum was around 68 or so, which is how old Jim was. We have friends who just commented yesterday, they still cannot believe this has happened to him. He was such a healthy stoic man all his life. I just cannot extend to you enough my sorrow and heartache for the loss of your beloved mum. Please continue to keep in touch so that I know you are doing ok. God Bless you for being such a loving, caring daughter, your mother was very blessed to have you.

    Love,
    Emily

    Thanks Em. It's almost a
    Thanks Em. It's almost a week now and I don't know how I will cope without her around. I guess you just go on because you have to, but I will have a big hole where she used to be. Mum was 65. It really wasn't enough time - her mother is still alive at 88, so I thought I'd have her a lot longer. The hardest thing is when my little niece asks where Nanna is.
  • Em
    Em Member Posts: 36
    #41
    augigi said:

    Thanks Em. It's almost a
    Thanks Em. It's almost a week now and I don't know how I will cope without her around. I guess you just go on because you have to, but I will have a big hole where she used to be. Mum was 65. It really wasn't enough time - her mother is still alive at 88, so I thought I'd have her a lot longer. The hardest thing is when my little niece asks where Nanna is.

    Mesothelioma
    I am 64 so I too feel your mother and my Jim were much too young to leave us this soon. Jim's mother is also still alive, and 88 years old. I am having a difficult time tonight as I looked at the clock the moment he died three months ago tonight, I miss him so much. No one will ever fill that hole in your life, but we must cling to the wonderful memories and know that some day we will all be together again. Please stay in touch so I know how you are doing. I lost my mom when I was 19 and my dad when I was 18, time does help, but no one can ever fill their place or role in our lives. And it is hard to explain to a small child what has happened too. Although I think the little ones may be more in tune with the heavens then us adults. Blessings and prayers to you dear Jen.

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