Carleen Posted July 1, 2009 Posted July 1, 2009 (((Michelle))) I am sorry you are struggling with these questions, emotions, and the guilt and insecurity that go with them. No one can tell you or your husband what the right answer is. Including your doctor. No one knows how much time any one of us has. I think the doctor may have let prior disappointments and a pessimistic bias cloud his advice to you. Hope is a gift. It should not be stripped away prematurely. And who benefits if "reality" is forced upon your husband? Is that going to make him feel better? Your husband sounds a lot like mine was. From the time he was first diagnosed and given his "prognosis and life expectancy" he was in denial. Doctors orignially told him he had 3-6 months without treatment and possibly 9 months with. But he would only talk about the positive, the people he read about that beat the odds, about the plans we had for next year, the plans for retirement, the plans for our grandchildren of the children we didn't yet have. In my opinion, his hope, his denial was the answer to whether or not he wanted to give up. His positive attitude did not sound to me like someone who was ready to get his affairs in order, call hospice and give up. And as far as success stories being far and few... well, maybe they are, but maybe success is measured in different things. My husband did lose his battle, but he lived 3 1/2 years after diagnosis. Not the 9 months he was told. That was 3 more birthdays, 3 more anniversaries, 3 years of memories, 3 million more I Love You's To me that is a great success. I know neither one of us would have traded those extra 3 years for a little less chemo, a little more reality. Until the day he died, Keith never once said one word about the possibility of his dying. We never made any burial plans, we never talked about what he wanted or what I should do after he was gone. Yes, it definitely made things much harder on me after he was gone having to plan and live without the knowledge of what he would have wished for. But in my case, the true selfishness would have been to rob him of his hope, and mental defenses in order to provide myself with a more comfortable transition. I don't think helping someone through the fight can ever be called selfish. It's not like watching the ones we love suffer and feel the side effects of treatment and cancer is an easy thing. But in the end it is all up to you and your husband, and what you feel in your heart, and what you know about him... is he ready to give up? Does he talk like he's ready to give up? And I believe that there is a point, where if the side effects, the pain of prolonging his life become too much to handle verses having to handle the acceptance of dying, your husband will find a way to let you know. You and your husband are in my prayers, and I wish for you gentle days and the comfort of God's presence. Quote
Carleen Posted July 1, 2009 Posted July 1, 2009 (((Michelle))) I am sorry you are struggling with these questions, emotions, and the guilt and insecurity that go with them. No one can tell you or your husband what the right answer is. Including your doctor. No one knows how much time any one of us has. I think the doctor may have let prior disappointments and a pessimistic bias cloud his advice to you. Hope is a gift. It should not be stripped away prematurely. And who benefits if "reality" is forced upon your husband? Is that going to make him feel better? Your husband sounds a lot like mine was. From the time he was first diagnosed and given his "prognosis and life expectancy" he was in denial. Doctors orignially told him he had 3-6 months without treatment and possibly 9 months with. But he would only talk about the positive, the people he read about that beat the odds, about the plans we had for next year, the plans for retirement, the plans for our grandchildren of the children we didn't yet have. In my opinion, his hope, his denial was the answer to whether or not he wanted to give up. His positive attitude did not sound to me like someone who was ready to get his affairs in order, call hospice and give up. And as far as success stories being far and few... well, maybe they are, but maybe success is measured in different things. My husband did lose his battle, but he lived 3 1/2 years after diagnosis. Not the 9 months he was told. That was 3 more birthdays, 3 more anniversaries, 3 years of memories, 3 million more I Love You's To me that is a great success. I know neither one of us would have traded those extra 3 years for a little less chemo, a little more reality. Until the day he died, Keith never once said one word about the possibility of his dying. We never made any burial plans, we never talked about what he wanted or what I should do after he was gone. Yes, it definitely made things much harder on me after he was gone having to plan and live without the knowledge of what he would have wished for. But in my case, the true selfishness would have been to rob him of his hope, and mental defenses in order to provide myself with a more comfortable transition. I don't think helping someone through the fight can ever be called selfish. It's not like watching the ones we love suffer and feel the side effects of treatment and cancer is an easy thing. But in the end it is all up to you and your husband, and what you feel in your heart, and what you know about him... is he ready to give up? Does he talk like he's ready to give up? And I believe that there is a point, where if the side effects, the pain of prolonging his life become too much to handle verses having to handle the acceptance of dying, your husband will find a way to let you know. You and your husband are in my prayers, and I wish for you gentle days and the comfort of God's presence. Quote
Patti B Posted July 1, 2009 Posted July 1, 2009 Hi Michelle- Just a quick post. I saw that you were over on cancergrace and that Dr. West suggested that possibly your husbands cancer in his lungs was a met from his bladder cancer. If that is true, don't your docs know that??? That would mean that lung cancer stats really don't mean anything right now (not that I think anything of statistics). I think I remember you saying you see the onc next week. Please include that in your conversation wth him. And.......if worse comes to worse, you might want to considere getting a second opinion!!! Hugs - Patti B. Quote
michellep Posted July 1, 2009 Author Posted July 1, 2009 "Patti B"](((((Michelle))))Maybe your husband never discusses this with you because he doesn't want to upset you. Sometimes us survivors tend to try to protect our loved ones. Or, maybe it is denial on his part. Maybe you should talk to his oncologist. Wasn't it his regular doctor you talked to?? See what the oncologist has to say. I can totally understand why it would be so difficult for you to discuss the subject with him. One last thought - do you think your husband is at all depressed??? Could that be why he doesn't talk much about his cancer??? Many of us suffer from depression from time to time simply because of the strain having LC puts on us. If so, talk to the doc about getting him an anti-depressant prescribed for him. Many, many of us here have taken some from time to time. I hope you do get to sit outside and listen to the birds real soon. Keeping you both in my thoughts. Hugs - Patti B. (((Patti))) We won't be able to see the oncologist until July 20th. I would assume at that time he'll discuss the chemo effects etc. I wish we could see him earlier but that's not possible according to his staff. However I was able to ask the PA a few questions yesterday but she herself doesn't know too much yet. It's early I guess because we've only had a few treatments. Although they reduced the amount of chemo by 20% because it's just zapping his blood count. We go again tomorrow for another 3 units of blood. No, I don't think he's depressed. Actually on good days when he's feeling well physically (which if very few) he's alert and playful with me. Today even when we discussed how picky he is about food these days I suggested that he eat baby food. He laughed and asked if he could also have a rubber ducky at bath time. Once in a while he does seem agitated because he says he's tired of just looking at the four walls in the bedroom. I try to bring him out on good days but there aren't many. Quote
michellep Posted July 1, 2009 Author Posted July 1, 2009 Thank you for all your kind words. The story of you and your husbands journey really touched my heart. He sounds like he was a wonderful man and I'm heartbroken over your loss. Yes, your husband and mine sound very much alike as far as keeping a positive attitude and wanting to discuss future events. Your words brought so much comfort to me because I just can't bring myself to tell him what the doc thinks his prognosis is. I will listen to the words from my heart....and they tell me to love him and make him as happy as I can for as long as I can. Quote
Trawna Posted July 1, 2009 Posted July 1, 2009 Dear Michelle: My heart goes out to you and your dear husband, I do hope the edema is being resolved, and that he will soon improve. I just wanted to let you know I totally agree with Carleen who said that hope is a gift, and that nobody knows how much time any of us have. My husband was in total denial, even after both his onc. and family MD told him the likelihood of his situation, and from others who have been caregivers in these situations I understand this is not an uncommon thing. Bottom line is, I finally just accepted what the MDs said and then did not discuss it further with him unless he initiated the conversation. Eventually he came around to telling me some of his wishes fortunately, but only under the conditions of "if something goes wrong, this is what I want you to do..." Had I pushed anything, I would only have made him more uncomfortable and less communicative, as he was a fighter to the end. He finally went into palliative care after a visit to the ER followed by new CT and lung xrays and PET scans which the MDs shared with me but not him, but he only went in because the ER admitted him to the onc. ward originally and he was finally told (eg lied to by his onc. after we persuaded her that although she had told him the reality) that he simply could not face the prognosis and so she told him that she was moving him to a ward where he would have greater privacy for his family to visit and where we could stay with him 24/7 and where the nursing staff could give him better care, and that as soon as his breathing issues were resolved he could go home. That was never in the cards and the rest of the family knew it (we had seen the CAT and PET scans, which he did not want to see) ... but the "white lies" helped him deal with it and focus on the positive of getting home to sit in the back yard and listen to the birds and see the flowers. They actually took him into palliative care through a "back door" where he could not see the term "palliative care" on the ward, so they were very good at undertanding the situation. Please do not think that you need in any way to convince him or even talk to him of what the MD has told you, my suspicion is that his MD is likely just trying to prepare you for the worst so that you know what to watch for, expect, and perhaps provide support for you in the long run. Believe me, I needed to know that, although my husband did not and could not accept it even when told directly. And in the end, with all the family lying like mad to him about coming home, he was willing to accept appropriate palliative/hospice type care, whereas if he had thought that was what it was, he no doubt would have refused altogether, and so by accepting it that made his passing much more painless and more peaceful for him. Please understand that I am not suggesting that you give up hope ... I never did until the day he died ... but it was helpful to know what end-of-life signs were, what could be done to make him more comfortable as that approached, and what to tell the rest of the family so that at the end all his family were able to there with him. I will keep you both close to my heart, and wish you the very best outcome posssible. (((hugs))) Jane Quote
michellep Posted July 2, 2009 Author Posted July 2, 2009 WOW! Your message really touched me...and I thank you so very much. I feel so much better about not having this "discussion" with my husband after reading so many replies from wonderful loving people such as yourself. The picture you have here of your husband and yourself is beautiful. I imagine that you have many many loving memories of your lives together and I am so sorry for your loss. I too wish that we could find a cure for this horrible disease. No one deserves this.....no one. And I also believe that God holds a special place in heaven for caregivers like us. Bless you my friend! Quote
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