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Medical Forum / Diseases and Disorders / Breast Cancer / July 2008How do others feel about it?
Here's an excellent discussion of how cancer patients (breast and otherwise) feel about the need to put on a brave face and "stay positive": http://well.blogs.nytimes.com/2008/06/02/cancer-emotions-upbeat-stoic-or-just-sc ared/#comments (You can skip comment #84 since you already know how I feel about this!) Eva > Here's an excellent discussion of how cancer patients (breast and > otherwise) feel about the need to put on a brave face and "stay positive": [quoted text clipped - 4 lines] > > Eva There hasn't been time for me to read it all (you're only no 84!) but I'm surprised about how distressed many people are. I do agree with the folk who don't like words such as battle, war, fight etc. If you have a cold you get on with it, if you break a leg you get on with it, if you have cancer you get on with it - after all what else IS there to do? I wish I had time to read everything ... it does seem that there are as many reactions as there are people. As for putting on a brave face or being positive, again I can't see the point. If you need help or sympathy why should you deny it? We're all different, cancers and the way they affect people are all different. The same is true of Life :-) Mary > Here's an excellent discussion of how cancer patients (breast and > otherwise) feel about the need to put on a brave face and "stay positive": [quoted text clipped - 4 lines] > > Eva Cancer made me feel as if I had been accosted by surprise on the way home, dragged into a car, roughed up and dumped, still stunned by the suddeness of it all, somewhere totally alien... I don't know where home is anymore... But at least I'm still getting around. María >> Here's an excellent discussion of how cancer patients (breast and >> otherwise) feel about the need to put on a brave face and "stay >> positive": >> >> http://well.blogs.nytimes.com/2008/06/02/cancer-emotions-upbeat-stoic-or-just-sc ared/#comments > Cancer made me feel as if I had been accosted by surprise on the way home, > dragged into a car, roughed up and dumped, still stunned by the suddeness > of it all, somewhere totally alien... > > I don't know where home is anymore... But at least I'm still getting > around. -------------------- The thing is, do you express these feelings only in safe places like this newsgroup, or do you feel free to talk about them at work, say, or with friends and acquaintances in general? Because I think the general sense of the NYTimes discussion is that most of us feel compelled to put on that "thumbs-up!" performance in public, feeling that this is the only socially acceptable way to play the part of Person With Cancer. Eva Eva >The thing is, do you express these feelings only in safe places like this >newsgroup, or do you feel free to talk about them at work, say, or with [quoted text clipped - 4 lines] >that this is the only socially acceptable way to play the part of Person >With Cancer. I think you have something there. I found it difficult to express some of my feelings even to my family, since I didn't want them to worry, and I found that in general conversation, people would prefer that you don't let your hair down on this particular subject because they feel impotent and with the best intentions in the world, don't know what to say. I found writing a blog helped enormously. I told close friends and family how to access it and left it so that they could look at it if they wanted to and ignore it if they couldn't bear it and I would never know unless one of them chose to respond to a particular post. To another group of close friends in my creative writing group, who sent me lots of cards, notes and e-mail, since I was too tired to respond individually, I sent a round robin in which I found I could be a little more explicit. I also found that my usual pursuit of writing poetry was a great help.  Signature"It's easier to get forgiveness than permission." Rear Admiral "Amazing" Grace Hopper > "Maria" <pi...@hoskins.me.uk> wrote in message > [quoted text clipped - 16 lines] > that this is the only socially acceptable way to play the part of Person > With Cancer. I have been lurking on this group since I was diagnosed with locally advanced breast cancer a year ago. I do feel that the "thumbs-up!" attitude is the only socially acceptable one to meet most people with. One of my most difficult moments came when talking to an other woman who has had breast cancer. When she heard that I had been diagnosed a few days earlier, she did not want to hear more, but interrupted and kept repeating: "But they caught it early, right? It's in situ, right?". Ever since I got my diagnosis, I have seen my treatment team as both brave and as warriors: They put together a "dose dense" regimen designed to "beat this thing", and they have literally been fighting the cancer with every cunning weapon they could think of, bravely willing to cause quite a bit of destruction in order to win. I'm grateful for their zeal and bravery. When I had my mastectomy, after finishing AC/T and still on Herceptin, pathology found no live cancer cells either in my breast or in my nodes, and my oncologist declared me "theoretically cured". Since then I have also finished radiation. Now, a year after getting the diagnosis, I'm back to my normal activities, I have my hair back, and having lost 10 % of my body weight, people around me tell me I look great. And they clearly want that to be the end of the story. Of course it's not. Ixia Hi Ixia, It might be the end of the story - don't turn your back on that possibility. We will hope and pray that it is, for you as well as for all of us. Tamara On Jun 5, 9:37 pm, "Eva" <EvaDStructio...@NOverizon.net> wrote: > "Maria" <pi...@hoskins.me.uk> wrote in message > [quoted text clipped - 20 lines] > that this is the only socially acceptable way to play the part of Person > With Cancer. I have been lurking on this group since I was diagnosed with locally advanced breast cancer a year ago. I do feel that the "thumbs-up!" attitude is the only socially acceptable one to meet most people with. One of my most difficult moments came when talking to an other woman who has had breast cancer. When she heard that I had been diagnosed a few days earlier, she did not want to hear more, but interrupted and kept repeating: "But they caught it early, right? It's in situ, right?". Ever since I got my diagnosis, I have seen my treatment team as both brave and as warriors: They put together a "dose dense" regimen designed to "beat this thing", and they have literally been fighting the cancer with every cunning weapon they could think of, bravely willing to cause quite a bit of destruction in order to win. I'm grateful for their zeal and bravery. When I had my mastectomy, after finishing AC/T and still on Herceptin, pathology found no live cancer cells either in my breast or in my nodes, and my oncologist declared me "theoretically cured". Since then I have also finished radiation. Now, a year after getting the diagnosis, I'm back to my normal activities, I have my hair back, and having lost 10 % of my body weight, people around me tell me I look great. And they clearly want that to be the end of the story. Of course it's not. Ixia > Hi Ixia, > > It might be the end of the story - don't turn your back on that possibility. > We will hope and pray that it is, for you as well as for all of us. > > Tamara Tamara, you mean that I may still live into old age and die from unrelated causes. Of course I hope for that, for you and everyone here, and for myself. When that happens, /that's/ the end of the story, but we're not there yet, any of us. "The rest of the story" is what happens to us, how we think about ourselves and others, how we take care of ourselves and each other. The woman I wrote about before, who could not let me speak, went on to tell me how terrified she is that her own cancer will come back. She does not have insurance. Further up in the thread, Eva wrote: The thing is, do you express these feelings only in safe places like this newsgroup, or do you feel free to talk about them at work, say, or with friends and acquaintances in general? Because I think the general sense of the NYTimes discussion is that most of us feel compelled to put on that "thumbs-up!" performance in public, feeling that this is the only socially acceptable way to play the part of Person With Cancer." I agree with her, I often experience it as the only acceptable way to be. Sadly enough, because in spite of all the talk about "winning", "battles" and "bravery", we are all going to die, cancer or not. We can not be fully and vibrantly alive until we accept and embrace life on it's own terms - and cancer is part of that, dying is part of that. Pain is part of that. Being afraid is part of that. Also Joy, Love, Hope. Sunshine, friends, good books, art, music... After I read the NYT article, I came across this story: http://www.baltimoresun.com/news/local/annearundel/bal-ar.compass04jun04,0,34196 84.story "many don't realize that late-stage patients feel shut out by many breast cancer support groups, Corneliussen-James said. Women with incurable cancer often hold back at meetings because they don't want to depress or frighten other women who are newly diagnosed, Corneliussen-James said. Some groups have gone further, she said, asking late-stage breast cancer patients not to attend their meetings. She said the Breast Center at the Annapolis hospital assigned her a mentor and gave her a gift bag of information when she was diagnosed with stage III breast cancer in 2004. After a lumpectomy, chemotherapy and radiation, she went into remission. When she was diagnosed with stage IV breast cancer in 2006, there was no mentor or bag waiting for her. Stage IV cancer patients understandably don't have mentors." Ixia > On Jun 5, 9:37 pm, "Eva" <EvaDStructio...@NOverizon.net> wrote: > [quoted text clipped - 51 lines] > > Ixia Ixia, I am aware of all that you write about. My cancer returning frightens me to death - I often wonder how the women how have advanced CA go thru each day. I consider myself a survivor, a fighter, a warrior - but mostly due to what I went thru in treatment, not that I have survived the Big C - because as you've said - the story's not over yet. I put on a good face for my family. I recently saw my best friend and told her - some 2 1/2 years after I was diagnosed - I just didn't know how to make the phone call. We're all so used to "how ya doin" - Fine, good, etc. When I need a good cry - I do but often alone. I turned to support lines after my surgery when I was so totally lost and disgusted with my own body. I'm not happy with it now but I cope. That's all we can do - we cope. And sometimes it's like getting up and putting on makeup even if you're not going anywhere - it makes you feel a certain way. We put on our best faces for the people we know and are in contact with because possibly the feeling rubs off somewhat and we "make" our selves feel better even if we really don't - and I'm not sure that that is a bad thing., Tammy On Jun 6, 10:27 pm, "R. Fizek" <fizkow...@verizon.net> wrote: > Hi Ixia, > [quoted text clipped - 3 lines] > > Tamara Tamara, you mean that I may still live into old age and die from unrelated causes. Of course I hope for that, for you and everyone here, and for myself. When that happens, /that's/ the end of the story, but we're not there yet, any of us. "The rest of the story" is what happens to us, how we think about ourselves and others, how we take care of ourselves and each other. The woman I wrote about before, who could not let me speak, went on to tell me how terrified she is that her own cancer will come back. She does not have insurance. Further up in the thread, Eva wrote: The thing is, do you express these feelings only in safe places like this newsgroup, or do you feel free to talk about them at work, say, or with friends and acquaintances in general? Because I think the general sense of the NYTimes discussion is that most of us feel compelled to put on that "thumbs-up!" performance in public, feeling that this is the only socially acceptable way to play the part of Person With Cancer." I agree with her, I often experience it as the only acceptable way to be. Sadly enough, because in spite of all the talk about "winning", "battles" and "bravery", we are all going to die, cancer or not. We can not be fully and vibrantly alive until we accept and embrace life on it's own terms - and cancer is part of that, dying is part of that. Pain is part of that. Being afraid is part of that. Also Joy, Love, Hope. Sunshine, friends, good books, art, music... After I read the NYT article, I came across this story: http://www.baltimoresun.com/news/local/annearundel/bal-ar.compass04jun04,0,34196 84.story "many don't realize that late-stage patients feel shut out by many breast cancer support groups, Corneliussen-James said.??Women with incurable cancer often hold back at meetings because they don't want to depress or frighten other women who are newly diagnosed, Corneliussen-James said. Some groups have gone further, she said, asking late-stage breast cancer patients not to attend their meetings. She said the Breast Center at the Annapolis hospital assigned her a mentor and gave her a gift bag of information when she was diagnosed with stage III breast cancer in 2004. After a lumpectomy, chemotherapy and radiation, she went into remission. When she was diagnosed with stage IV breast cancer in 2006, there was no mentor or bag waiting for her. Stage IV cancer patients understandably don't have mentors." Ixia >"Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 55 lines] > > Ixia > Ixia, > [quoted text clipped - 3 lines] > I went thru in treatment, not that I have survived the Big C - because as > you've said - the story's not over yet. Exactly > I put on a good face for my family. > I recently saw my best friend and told her - some 2 1/2 years after I was > diagnosed - I just didn't know how to make the phone call. We're all so > used to "how ya doin" - Fine, good, etc. I did not tell anyone right away, except my husband. My daughter was in an other city, studying for the bar. I wanted very much for her to be able to finish in peace, and I did not want to tell others before I told her. By the time my daughter finished her exam, I was well into chemo, and it knocked me down pretty well. I spoke to my closest family in person, but sent e-mails to everyone else: "I'm on chemo, but I hope or a cure". Most people were kind and helpful, some have still not been able to respond in any meaningful way. My husband and kids were the best. My husband drove me too and from all the treatments, and took care of all the stuff that I simply could not manage. My daughter took time off to be with me when I was at the sickest, and my son came home when I had the operation. He actually made me believe that he thought I looked cool bald! ;-D It was tempting to hole up alone and not bother my kids, I could tell it was very difficult for them to see what was happening to me. On the other hand it was important to allow my kids, who are young adults, to "rise to the occasion" - and they did so, splendidly. So did their friends and their "significant others". I was greatly helped by their love and humor, and I am very happy now, knowing that even at their young ages, they are true adults who know how give love, kindness and care, as well as how to receive it. I hope still to be around for a long time, but if I'm not, I know they can take care of themselves and others. > When I need a good cry - I do but > often alone. Yes, there is no need to always "letting it all hang out". > I turned to support lines after my surgery when I was so > totally lost and disgusted with my own body. I'm not happy with it now but > I cope. That's all we can do - we cope. I dress carefully, and I'm happy when people say I look well. I think I look well, but I'm not at peace with my body yet. All of a sudden I'm in menopause... I'm not sure if I'll be able to have an implant, due to all the radiation. The burns have healed, but the whole area is still uncomfortable enough that the thought of stretching implants is very upsetting. I have been reading about trans and diep flaps, but I simply can't face a major operation yet. > And sometimes it's like getting up > and putting on makeup even if you're not going anywhere - it makes you feel > a certain way. We put on our best faces for the people we know and are in > contact with because possibly the feeling rubs off somewhat and we "make" > our selves feel better even if we really don't - and I'm not sure that that > is a bad thing., I think it's a good thing when you /choose/ to do it, out of true consideration for others and yourself because it makes you feel good to look good and so on. What I object to is a subtle, sometimes not so subtle, demand that I put on a fake "thumps up" performance in order to save others from experiencing any twinge of fear or discomfort from simply knowing about mine. I certainly don't ever want to torture others by parading my deepest fears or the grossness of my disease in front of them, but I can't take on the responsibility for "saving" other adults from their own normal but painful reactions to evidence of human frailness and mortality. Be well, Tammy :-) Ixia Thanks Ixia, It's clear that your family has benefited from your wisdom and I'm sure that your children are the way they are because you are the way you are. Regards, Tammy On Jun 7, 11:10 pm, "R. Fizek" <fizkow...@verizon.net> wrote: > Ixia, > [quoted text clipped - 6 lines] > I went thru in treatment, not that I have survived the Big C - because as > you've said - the story's not over yet. Exactly > I put on a good face for my family. > I recently saw my best friend and told her - some 2 1/2 years after I was > diagnosed - I just didn't know how to make the phone call. We're all so > used to "how ya doin" - Fine, good, etc. I did not tell anyone right away, except my husband. My daughter was in an other city, studying for the bar. I wanted very much for her to be able to finish in peace, and I did not want to tell others before I told her. By the time my daughter finished her exam, I was well into chemo, and it knocked me down pretty well. I spoke to my closest family in person, but sent e-mails to everyone else: "I'm on chemo, but I hope or a cure". Most people were kind and helpful, some have still not been able to respond in any meaningful way. My husband and kids were the best. My husband drove me too and from all the treatments, and took care of all the stuff that I simply could not manage. My daughter took time off to be with me when I was at the sickest, and my son came home when I had the operation. He actually made me believe that he thought I looked cool bald! ;-D It was tempting to hole up alone and not bother my kids, I could tell it was very difficult for them to see what was happening to me. On the other hand it was important to allow my kids, who are young adults, to "rise to the occasion" - and they did so, splendidly. So did their friends and their "significant others". I was greatly helped by their love and humor, and I am very happy now, knowing that even at their young ages, they are true adults who know how give love, kindness and care, as well as how to receive it. I hope still to be around for a long time, but if I'm not, I know they can take care of themselves and others. > When I need a good cry - I do but > often alone. Yes, there is no need to always "letting it all hang out". > I turned to support lines after my surgery when I was so > totally lost and disgusted with my own body. I'm not happy with it now but > I cope. That's all we can do - we cope. I dress carefully, and I'm happy when people say I look well. I think I look well, but I'm not at peace with my body yet. All of a sudden I'm in menopause... I'm not sure if I'll be able to have an implant, due to all the radiation. The burns have healed, but the whole area is still uncomfortable enough that the thought of stretching implants is very upsetting. I have been reading about trans and diep flaps, but I simply can't face a major operation yet. > And sometimes it's like getting up > and putting on makeup even if you're not going anywhere - it makes you [quoted text clipped - 4 lines] > that > is a bad thing., I think it's a good thing when you /choose/ to do it, out of true consideration for others and yourself because it makes you feel good to look good and so on. What I object to is a subtle, sometimes not so subtle, demand that I put on a fake "thumps up" performance in order to save others from experiencing any twinge of fear or discomfort from simply knowing about mine. I certainly don't ever want to torture others by parading my deepest fears or the grossness of my disease in front of them, but I can't take on the responsibility for "saving" other adults from their own normal but painful reactions to evidence of human frailness and mortality. Be well, Tammy :-) Ixia > It was tempting to hole up alone and not bother my kids, I could tell > it was very difficult for them to see what was happening to me. On the [quoted text clipped - 6 lines] > long time, but if I'm not, I know they can take care of themselves and > others. You did the right thing. It is tempting to keep your diagnosis a secret, especially from young children, making the excuse that you are protecting their feelings. Really that's a cop-out, not only is it not protecting their feelings but your own, but also it is gambling with their feelings. You would be taking the risk that you might *not* be cured, and then having to explain why you didn't tell them before; and the risk that they might become aware something is going on, and as children do, feel they are somehow to blame. When my wife got to stage IV, I was very glad we had told our daughter, who had only been four when her mother was first diagnosed, what was going on. It made it a lot easier to do that most difficult thing, telling her her mother was dying. I strongly believe that bad news gets harder to impart the longer you leave it, so it is always best dealt with as immediately as possible. Even to four year-olds. Tim Jackson > It is tempting to keep your diagnosis a secret, especially from young > children, making the excuse that you are protecting their feelings. [quoted text clipped - 4 lines] > become aware something is going on, and as children do, feel they are > somehow to blame. Yes. My aunt died of breast cancer when I was little. She was ill for several years before she died, a pitiful shadow of herself. No one spoke to me about her disease, or to my cousins, who lived with us, so their father could care for their mother. I understand that our parents had the best intentions, and wanted to shield us from the horror they and she experienced, but it was a harrowing time for us children. I loved my young, lively, beautiful aunt and was sorry for her, wanted her well again. Also frightened and angry for the havoc her disease caused in our lives. And for the agony of my cousins as she faded away. At a certain point I started to wish she would die, so it would all end. Then, when she actually did die, I was guilt ridden for years. As my parents, aunt and uncle had never spoken to me about her illness and coming death, there was no way for me to talk to them either, and get their assurance that I was not evil. The experience made it important for me to be open about my own diagnosis, treatment and prognosis even though I found it difficult. > When my wife got to stage IV, I was very glad we had told our daughter, > who had only been four when her mother was first diagnosed, what was > going on. It made it a lot easier to do that most difficult > thing, telling her her mother was dying. It must have been very, very difficult for you and for your wife. I feel for both of you. Your daughter is lucky to have two such strong and honest parents. > I strongly believe that bad news gets harder to impart the longer you > leave it, so it is always best dealt with as immediately as possible. > Even to four year-olds. Yes, but we can only do what we are able to. We are each so different, our personal circumstances, views and so on are so different. Ixia > At a certain point I started to wish > she would die, so it would all end. Then, when she actually did die, I > was guilt ridden for years. As my parents, aunt and uncle had never > spoken to me about her illness and coming death, there was no way for > me to talk to them either, and get their assurance that I was not > evil. You are not evil, this is perfectly normal. I'm sure you know that now. There were many times during my wife's illness that I wished she would die, her continued living wasn't doing anyone any good, least of all her. That didn't mean I didn't love her. If we have a dog that is dying, we can end its suffering, but with a human we must prolong the torture. Where is the love in that? (The difference being that dogs can't own property, so there is little incentive for abuse of the privilege.) > The experience made it important for me to be open about my own > diagnosis, treatment and prognosis even though I found it difficult. > It must have been very, very difficult for you and for your wife. I > feel for both of you. Your daughter is lucky to have two such strong > and honest parents. I admit it was my wife who did the hard work in this case, but it had always been our policy to be scrupulously honest with the children. When Natasha was a baby, not yet talking, and I took her for her first injection, I carefully explained to her that it would hurt briefly, but quickly be over. The doctor actually asked me why I wanted to tell her that. My reply was that I wanted her to trust me in the future. I was rewarded by the fact that she didn't cry, although the previous victim could still be heard wailing down the corridor. > Yes, but we can only do what we are able to. We are each so different, > our personal circumstances, views and so on are so different. True, but I hope that by writing here I can have a little impact on "received wisdom" and encourage people to have the strength to take the road that is the least painful in the longer term rather than the path of least resistance. Tim > I admit it was my wife who did the hard work in this case, but it had > always been our policy to be scrupulously honest with the children. When [quoted text clipped - 4 lines] > rewarded by the fact that she didn't cry, although the previous victim > could still be heard wailing down the corridor. Well done, Time. My beef is anaesthetists who say, "It will only be a little scratch" because they're frightened of using the word 'prick'. It isn't a little scratch, for me, it's a painful prick but I'm prepared for it or I wouldn't be there. > True, but I hope that by writing here I can have a little impact on > "received wisdom" and encourage people to have the strength to take the > road that is the least painful in the longer term rather than the path of > least resistance. You do, Tim, and have done ever since I came here. Your stories of how you and Lyudmilla (sp?) cared for each other - and the lovely Natasha - inspired very many people here, including me. Every now and again you need to be thanked. Thank you, Tim, Mary > Tim > You are not evil, this is perfectly normal. I'm sure you know that now. I do. > There were many times during my wife's illness that I wished she would > die, her continued living wasn't doing anyone any good, least of all > her. That didn't mean I didn't love her. Of course not. Feelings like that can be disturbing enough for adults, and difficult to talk about. Children would benefit from having a mature adult helping them sort things out. > > > I admit it was my wife who did the hard work in this case, but it had > always been our policy to be scrupulously honest with the children. She was brave, and she gave her daughter a good role model. > When Natasha was a baby, not yet talking, and I took her for her first > injection, I carefully explained to her that it would hurt briefly, but [quoted text clipped - 4 lines] > :-) Babies understand a lot before they can talk. > > Yes, but we can only do what we are able to. We are each so different, > > our personal circumstances, views and so on are so different. [quoted text clipped - 3 lines] > road that is the least painful in the longer term rather than the path > of least resistance. As I said further up in the thread - I have lurked on this newsgroup and searched it's archive ever since I was diagnosed. It has often been helpful, and I'm grateful to you and the others here for lots of good information and a friendly atmosphere. Ixia I so much appreciate this thread. One of the things I found most challenging was the loss of individuality that supporting a cancer survivor seemed to convey. I was no longer myself; I had to be a strong, fighting man. It took me a while to get over resenting what I felt was the socially-determined demand to become something I did not think I was. Not only did I need to deal with my wife's diagnosis; I also had to change my own identity. In the end, I realized that everyone wanted to help, and the "fighter" metaphor is so strong that conveying the need to follow this metaphor was their way of helping. What is most important is to respect the diversity in how people deal with these situations. Some will find the "fighter" metaphor helpful, but some may not. Not accepting the role of "strong fighter" is not evidence of weakness. Supporting others means helping them to become what they, as individuals, need to be, rather than scripting one identity for all. Again, thank you. >I so much appreciate this thread. One of the things I found most > challenging was the loss of individuality that supporting a cancer [quoted text clipped - 12 lines] > what they, as individuals, need to be, rather than scripting one > identity for all. I think your last paragraph is the most important and it shows an insight which not many have. I'm not keen on the fighting simile but if it's what people want then there's no arguing. We're all so very different - it's amazing :-) Mary >> I so much appreciate this thread. One of the things I found most >> challenging was the loss of individuality that supporting a cancer [quoted text clipped - 20 lines] > > Mary Indeed I think the "strong fighter" metaphor is dangerous, particularly to male supporters. It leads to a macho attitude of playing the part of "immovable object" against which the waves of assault must break. But the cancer plays the part of "unstoppable force". If the force quits after the first assault that is OK, but if it comes back in the form of metastases, then it is the rock that will have to yield sooner or later. As I have said many times before, if you can't bend, you break. Whatever the received wisdom. Tim Jackson "Tim > You are not evil, this is perfectly normal. I'm sure you know that now. > There were many times during my wife's illness that I wished she would > die, her continued living wasn't doing anyone any good, least of all her. > That didn't mean I didn't love her. If we have a dog that is dying, we > can end its suffering, but with a human we must prolong the torture. not so. > "Tim > You are not evil, this is perfectly normal. I'm sure you know that > now. [quoted text clipped - 4 lines] > > not so. What is not so? That euthanasia is illegal in most countries, that palliative care is often not all it's cracked up to be, or that at times I wished my wife dead? Tim > > "Tim > You are not evil, this is perfectly normal. I'm sure you know that > > now. [quoted text clipped - 8 lines] > palliative care is often not all it's cracked up to be, or that at times > I wished my wife dead? Perhaps "with a human we must prolong the torture"? Each of us can end our torture any time we choose to - up to the point when we are too weak, mentally and/or physically. At the very end of a long and difficult illness, when there is no hope for any quality of life any more, it's probably natural for everyone involved to long for the end, at least on some level. People can also long for the end when they have years left in them, but are depressed and life is painful. It's a "big", definite, solution to what is most often many interwoven problems. With help and will, it is usually possible to find "small" solutions to enough of the many interwoven problems that life becomes meaningful and precious again. Asking for help in a meaningful way can be a real challenge. I'm a transplant from Norway, where we say that "The doorstep-mile is the longest mile of any journey." Ixia On Jun 25, 3:34 am, Tim Jackson <t...@tim-jackson.co.uk> wrote: > pumpkin wrote: > > "Tim > You are not evil, this is perfectly normal. I'm sure you know [quoted text clipped - 11 lines] > palliative care is often not all it's cracked up to be, or that at times > I wished my wife dead? Perhaps "with a human we must prolong the torture"? Each of us can end our torture any time we choose to - up to the point when we are too weak, mentally and/or physically. Yes but here at least (UK) it's illegal for anyone to help you. This is to protect people from being 'persuaded' that they want to die ... among other things. Mary > On Jun 25, 3:34 am, Tim Jackson <t...@tim-jackson.co.uk> wrote: > [quoted text clipped - 23 lines] > among other things. > Mary Being 'persuaded' is one problem, not getting needed help to find meaningful solutions is an other. I once saw a story about a young Dutch girl with anorexia nervosa who wanted (and got, if I remember correctly) help to end her life. I wonder what the outcome would have been if she had been asked to spend a few weeks feeding PlumpyNut to babies dying of starvation before bowing out of life. I like to think that she might have snuck a portion or two of PlumpyNut for herself, in order to be able to stay and help with the babies for a little while longer. Ixia On Jun 25, 7:23 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote: > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 28 lines] > among other things. > Mary Being 'persuaded' is one problem, not getting needed help to find meaningful solutions is an other. I know, that's the politicians' dilemma. Mary > Yes but here at least (UK) it's illegal for anyone to help you. doctors and caregivers and families do it all the time. Betty Rollin wrote about it decades ago. any of us who knows a nurse knows about this, in pretty much any industrialized county. just an uptick in the morphine dosage, just an eye averted. > This is to protect people from being 'persuaded' that they want to die ... > among other things. > Mary >> Yes but here at least (UK) it's illegal for anyone to help you. > > doctors and caregivers and families do it all the time. Betty Rollin wrote > about it decades ago. any of us who knows a nurse knows about this, in > pretty much any industrialized county. just an uptick in the morphine > dosage, just an eye averted. They do, but they aren't allowed to say so publicly on pain of prosecution and/or professional disqualification. The point was raised in the last UK parliamentary debate on assisted-dying legislation, and was carefully brushed back under the carpet. It seems we'd rather criminalise doctors doing their best for their patients than examine our own moral standards to closely. Tim >>> Yes but here at least (UK) it's illegal for anyone to help you. >> [quoted text clipped - 5 lines] > They do, but they aren't allowed to say so publicly on pain of prosecution > and/or professional disqualification. Bit it doesn't just depend on the eye. In UK every administered dose of morphine has to be recorded. If there were any suspicion of illegal administration the records would be compared with the stock records as part of the investigation. When Spouse was in dreadful pain following his prostatectomy not only was the paperwork done before he was dosed but he was asked silly questions like his name and date of birth - to check the dose was being given to the right patient, presumably! One motherly night nurse didn't. Later he asked why, she said she knew who he was and wanted to get on top of the problem as soon as possible. That should be the pragmatic approach, it's sensible and caring. Although she did complete the record Mary >just an uptick in the morphine dosage, just an > eye averted. Ah! My favorite subject. It seems the US is not the only nation which favors animals above humans! This "uptick in the morphine dosage" is illegal as far as I know in the US and can get one put in jail. We once had a "saint" here called Dr. Kevorkian who tried to help those who wanted to die with dignity while suffering a terminal illness and he ended up in jail! Yet I have never heard of any Vet being put in jail for putting a dog out of it's misery. It's ok for a human and their families to endure horrible sufferings but man's best friend the "dog" can be put to sleep immediately. Something sure got fouled up in out society when animals get better treatment than humans. I was recently informed that in the US, "Death with Dignity" is legal in Oregon as long as one has two doctors agreeing the patient is terminal. Maybe there is "hope" for the US after all if more states join in this. Just my opinion but I guess it isn't worth much since I am just a pitiful "human". Trice >> just an uptick in the morphine dosage, just an >> eye averted. [quoted text clipped - 21 lines] > > Trice It is of the nature of the law to be an arms race between those who would protect the rights of the individual against exploitation and those who would exploit the structure for their own ends. Right now places like Oregon and Switzerland do not seem to have too much problem with their assisted-suicide laws, although they do get a fair number of "death tourists", it works OK while they are very much in the minority. The fear among lawmakers is that if the practice became widespread, the "we'll get a new car when Granny croaks" brigade would find it a lot easier to persuade Granny to nip down to the local clinic for a termination, than it is to pack her off on a plane to Switzerland, with its attendant possibility of prosecution. Mind you, with the growing world food shortage, maybe it's time we revisited Soylent Green. (http://en.wikipedia.org/wiki/Soylent_Green). :-( Tim > The fear among lawmakers is that if the practice [legal assisted suicide] > became widespread, the "we'll get a new car when Granny croaks" brigade > would find it a lot easier to persuade Granny to nip down to the local > clinic for a termination, than it is to pack her off on a plane to > Switzerland, with its attendant possibility of prosecution. -------------- You're saying this tongue in cheek, but as a long-time employee of a nursing home, I can tell you there's hardly a week that goes by when I don't witness a frail elderly person being bullied by their family into doing something they don't want to do. IOW I think the lawmakers' concern is very appropriate. Eva >> The fear among lawmakers is that if the practice [legal assisted suicide] >> became widespread, the "we'll get a new car when Granny croaks" brigade [quoted text clipped - 11 lines] > > Eva Not really tongue in cheek Eva, apart from the last bit you didn't quote, but I do find it difficult to work up a head of steam over this. I mean we've all got to go sometime, and while the idea of dying and leaving my kids bereft horrifies me, if my kids actually wanted me to go then I can't see me putting up a lot of resistance. I always wanted to be responsible for my own life, not to be a burden on anyone else, that was a major reason for leaving home at 18. When I can't be that any more, then hell, "Game over: press reset". Boredom is a fate worse than death as far as I am concerned. I think life is over-rated. It reminds me of my Gran when she was near the end of her life, we the grandchildren all wanted her to hang on, and she was "ready with her bags packed". She explained to me that life had been pretty good, but now it was getting boring and uncomfortable and she was, in her words, "fed up with it". Not a pain problem as such, but there's no palliative care would make her 91 year old joints able to ride a bike or keep working on her beloved garden. I guess she pretty much died the way she wanted to go, a heart attack brought on by pulling up a bindweed. Now my mum is into that age range. When I'm helping her organise the investments that provide her pension, she annoys me by keeping saying "this is really your money", meaning it will be my inheritance when she goes. Well firstly, I've got 2 sisters, so it's only 1/3 true, and secondly, by the time she does go there probably won't be much left if she needs residential care for any length of time. I suppose my point is that the value judgements that serve us throughout our "productive" life have to be reconsidered when we get near the end. On the other hand, I think the sort of situation you are talking about is more often a case of relatives getting the old dear to sign over her capital into their care, and leaving her without the resources to pay for care in her old age (and that happens even under the UK system - the NHS doesn't cover residential care). In a way it might be kinder if she could be put down if the alternative is to be left to rot in an understaffed care home where she is not properly fed or cleaned and is just left stuck helpless in a chair all day. Tim yes, that's my state, and the first person to die with Kevorkian's "help" was my friend Janet. K is out of jail now but didn't answer my letter. he has been vilified. the law is imperfect but it's better than none. we are grateful for it. > I was recently informed that in the US, "Death with Dignity" is legal > in Oregon as long as one has two doctors agreeing the patient is > terminal. Maybe there is "hope" for the US after all if more states > join in this. yes, that's my state, and the first person to die with Kevorkian's "help" was my friend Janet. K is out of jail now but didn't answer my letter. he has been vilified and castrated, and it's too bad. the law is imperfect but it's better than none. we are grateful for it. and no, no hope, for the U.S. is the most "devout" and provincial of industrialized countries, also with highest rate of "sin" crimes, so .....duh! connection anyone? > Just my opinion but I guess it isn't worth much since I am just a > pitiful "human". I have friends who are radical "animal rights" people and never seem to get my point that humans too are animals and that the whole concept of "animal rights" wouldn't exist without humans. > Trice and then there are people who won't sign a donor card because they fear someone will hasten their deaths in order to harvest their organs. greed, selfishness...oh, and FEAR....define most people's priorities and decisions, alas. > >just an uptick in the morphine dosage, just an >> eye averted. [quoted text clipped - 21 lines] > > Trice > and then there are people who won't sign a donor card because they fear > someone will hasten their deaths in order to harvest their organs. ---------------- That would be me! Eva >> and then there are people who won't sign a donor card because they fear >> someone will hasten their deaths in order to harvest their organs. > ---------------- > That would be me! > > Eva if someone is going to do that, hon, he/she will do it no matter what the card says. I have donor tissue in my body, but even before that I...well, never mind. I can't donate blood any more (not until 5 years out from cancer) but I surely did before. we're all in this together, and fair's fair. >>> and then there are people who won't sign a donor card because they fear >>> someone will hasten their deaths in order to harvest their organs. [quoted text clipped - 9 lines] > I can't donate blood any more (not until 5 years out from cancer) but I > surely did before. we're all in this together, and fair's fair. I agree. Ideally my body will go for research, if they'll take it after all the useful bits have gone :-) If they'll take anything of course, demands and conditions change. If there's anything left it will be buried so increase the fertility of the Earth. Mary > I agree. Ideally my body will go for research, if they'll take it after > all the useful bits have gone :-) [quoted text clipped - 3 lines] > If there's anything left it will be buried so increase the fertility of > the Earth. good on you, sister! ;-) even cremation is environmentally execrable these days.... I definitely want to donate my body to science fiction. >> I agree. Ideally my body will go for research, if they'll take it after >> all the useful bits have gone :-) [quoted text clipped - 6 lines] > good on you, sister! ;-) even cremation is environmentally execrable these > days.... It always was! > I definitely want to donate my body to science fiction. LOL! One of my friends always introduced me to his friends as 'Mary - who's after my body' And followed with: 'for science' Mary Mary >>> "Tim > You are not evil, this is perfectly normal. I'm sure you know that >>> now. [quoted text clipped - 24 lines] > challenge. I'm a transplant from Norway, where we say that "The > doorstep-mile is the longest mile of any journey." "the point when we are too weak, mentally and/or physically" is what I was referring to. Before that point there is indeed the possibility of concatenating small solutions to make life meaningful, and I'm sure most of us do that. Yes asking for help is difficult, but even with the best help in the world, there still comes a point where it is hard to find any justification for continuing. I am thinking about when my wife was in a drugged twitching sleep 20-something hours a day, and when we did wake her to try to get some fluid into her, she didn't know whether it was Thursday or 1932. When this was the best balance we could obtain between no sleep (though continuous pain) and continuous sleep, after much experimentation. Really I was doing a little more than keeping an inert body gratuitously alive for the last few weeks. When she was eventually transferred to a hospice, their priorities were different and she died within two days. I was intimate enough with what was going on in her body to be pretty sure their regime hastened her end, but I have no complaints about that. Had I had the wherewithal (knowledge and materials) to achieve an orderly shut-down without the risk of prosecution, I would have done the same. Tim > "the point when we are too weak, mentally and/or physically" is what I > was referring to. I realize you were talking about your wife. I don't know for sure, but I think pumpkin was referring not to your situation, but to herself, when she answered your post. She has written elsewhere that she is depressed, and that she does not want to live another week. Hence my comments. > Before that point there is indeed the possibility of > concatenating small solutions to make life meaningful, and I'm sure most [quoted text clipped - 16 lines] > orderly shut-down without the risk of prosecution, I would have done the > same. Many (most?) of us would indeed have wanted the same, for ourselves or a loved one. It was a terrible painful time for you and your family, and it is very generous of you to share with others what you learned. It's helpful to hear how others cope. I'm not sure what pumpkin's situation is, but it sounded as if she is not at the natural end of her life, but depressed and in physical and mental pain, looking for solutions. Ixia >> "the point when we are too weak, mentally and/or physically" is what I >> was referring to. [quoted text clipped - 5 lines] > written elsewhere that she is depressed, and that she does not want to > live another week. Hence my comments. ... > I'm not sure what pumpkin's situation is, but it sounded as if she is > not at the natural end of her life, but depressed and in physical and > mental pain, looking for solutions. I am not for a minute suggesting that terminating people's lives is any substitute for proper palliative care and emotional support. I was reflecting on the apparent legal anomaly that exists, which as has been observed basically stems from property laws. I would still be interested to know exactly what Pumpkin was denying in my earlier post. One place to look for help in her sort of situation would be complimentary medicine. The NHS allocated my wife a reflexologist (a sort of foot massage) to visit weekly. I doubt that fiddling with her feet had any clinical benefit, but having someone to pay her attention and talk to her for half an hour was psychologically very beneficial. Some complementary treatments might do something for intractable pain too. Also the type of institution treating her may make a difference. When we moved from the local hospital to the Christie Hospital, the regional cancer centre, we found they had for example a specialist pain team who were expert on palliative care and could call upon the latest techniques. My wife was consequently one of the first patients there to be prescribed Fentanyl skin patches, which greatly reduced her analgesia side effects Tim >One place to look for help in her sort of situation would be >complimentary medicine. The NHS allocated my wife a reflexologist (a >sort of foot massage) to visit weekly. I doubt that fiddling with her >feet had any clinical benefit, but having someone to pay her attention >and talk to her for half an hour was psychologically very beneficial. >Some complementary treatments might do something for intractable pain too. I was given 45 minutes Indian head massage by a complementary practitioner who was also a nurse, the night before my operation and consequently slept well all night, where I had expected to lie awake worrying. I know it's not in the same league, but it was very helpful and made me feel lots better and more confident. Signature"It's easier to get forgiveness than permission." Rear Admiral "Amazing" Grace Hopper >> One place to look for help in her sort of situation would be >> complimentary medicine. The NHS allocated my wife a reflexologist (a [quoted text clipped - 8 lines] > worrying. I know it's not in the same league, but it was very helpful > and made me feel lots better and more confident. That's exactly the sort of thing I meant. Tim >>> One place to look for help in her sort of situation would be >>> complimentary medicine. The NHS allocated my wife a reflexologist (a [quoted text clipped - 13 lines] > > Tim Your post about feet massage reminded me that when my father in law was dying and we visited him in hospital he complained about his toenails which he couldn't cut. He was old and irascible and we'd always had a stormy relationship. His older son took some powerful cutters and did the nails, causing a lot of pain when he cut too deeply. I noticed that the skin on his feet was very horny so I took some skin softener and sat at the end of his bed simply gently massaging it into his feet. Very gradually the very thick and hard old skin sloughed away, leaving his feet soft and pliable. That was satisfying but although he hadn't spoken to me all the time amazingly he said that he felt so much better now that 'Mary had done my feet'. He slept well after that and I think we both felt that perhaps we had a role in each other's lives. Sadly it was too late to build on but in the last few weeks he did ask me to do it again even though it wasn't necessary. When Spouse had his hip replacement I did the same for him although it wasn't necessary. He hates having his feet touched, he says, but he enjoyed it and said it relaxed him. For me, in both cases, it was the feeling that I was doing something to help, with all the professional care going on at such times we sometimes feel useless. The onlooker is part of the whole too, we mustn't forget that. Anything we can do is beneficial for both sides. That's what I've learned. Mary > Your post about feet massage reminded me that when my father in law was > dying and we visited him in hospital he complained about his toenails which [quoted text clipped - 12 lines] > a role in each other's lives. Sadly it was too late to build on but in the > last few weeks he did ask me to do it again even though it wasn't necessary. That's a lovely story. > When Spouse had his hip replacement I did the same for him although it > wasn't necessary. He hates having his feet touched, he says, but he enjoyed [quoted text clipped - 4 lines] > feel useless. The onlooker is part of the whole too, we mustn't forget that. > Anything we can do is beneficial for both sides. So true! > That's what I've learned. Ixia > ... > [quoted text clipped - 4 lines] > I am not for a minute suggesting that terminating people's lives is any > substitute for proper palliative care and emotional support. No, I think you and pumpkin were talking past each other. > I was > reflecting on the apparent legal anomaly that exists, which as has been > observed basically stems from property laws. That's disturbing. I'm not sure I trust /anyone/ to make laws on when to terminate my life, however. > I would still be interested to know exactly what Pumpkin was denying in > my earlier post. I'm not holding my breath, but yes. > One place to look for help in her sort of situation would be > complimentary medicine. The NHS allocated my wife a reflexologist (a > sort of foot massage) to visit weekly. I doubt that fiddling with her > feet had any clinical benefit, but having someone to pay her attention > and talk to her for half an hour was psychologically very beneficial. > Some complementary treatments might do something for intractable pain too. Certainly loving touch and loving attention would help just about anyone, not only the physically ill or depressed. They should offer it to family members also! In some ways they suffer more I think. My husband developed terrible low back-pain (I guess it all was a real pain in the butt :-( when I was diagnosed, and is getting better now. Jon Kabat-Zinn's methods, described in the book, "Full Catastrophe Living. Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness" http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122 can really help people who suffer with stress, pain and depression. But reading, intellectually agreeing or disagreeing /will not do it/, one has to actually do it, live out, the exercises and advice. Listen up, pumpkin ;-) "The book goes into detail about how hospital patients have either improved their health or simply come to feel better despite their illness by using these techniques, but these meditations can help anyone deal with stress and gain a calmer outlook on life. "When we use the word healing to describe the experiences of people in the stress clinic, what we mean above all is that they are undergoing a profound transformation of view," Kabat-Zinn writes. "Out of this shift in perspective comes an ability to act with greater balance and inner security in the world." ixia yep On Jun 25, 3:34 am, Tim Jackson <t...@tim-jackson.co.uk> wrote: > pumpkin wrote: > > "Tim > You are not evil, this is perfectly normal. I'm sure you know [quoted text clipped - 11 lines] > palliative care is often not all it's cracked up to be, or that at times > I wished my wife dead? Perhaps "with a human we must prolong the torture"? Each of us can end our torture any time we choose to - up to the point when we are too weak, mentally and/or physically. At the very end of a long and difficult illness, when there is no hope for any quality of life any more, it's probably natural for everyone involved to long for the end, at least on some level. People can also long for the end when they have years left in them, but are depressed and life is painful. It's a "big", definite, solution to what is most often many interwoven problems. With help and will, it is usually possible to find "small" solutions to enough of the many interwoven problems that life becomes meaningful and precious again. Asking for help in a meaningful way can be a real challenge. I'm a transplant from Norway, where we say that "The doorstep-mile is the longest mile of any journey." Ixia > yep pumpkin, did you see the link to Jon Kabat-Zinn's book, "Full Catastrophe Living. Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness" ? http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122 It's a classic, I should think a good library would carry it. "The book goes into detail about how hospital patients have either improved their health or simply come to feel better despite their illness by using these techniques, but these meditations can help anyone deal with stress and gain a calmer outlook on life. "When we use the word healing to describe the experiences of people in the stress clinic, what we mean above all is that they are undergoing a profound transformation of view," Kabat-Zinn writes. "Out of this shift in perspective comes an ability to act with greater balance and inner security in the world." Ixia > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > > > Perhaps "with a human we must prolong the torture"? Each of us can end > > our torture any time we choose to - up to the point when we are too > > weak, mentally and/or physically. my library does have it but there are EIGHTEEN people in line in front of me! imagine, others with stress? Chodron's book has helped me quite a bit....so far so good. but then, I've had 2.5 non-sick days in a row, and cool weather....definitely factors in my favor! On Jul 4, 1:01 pm, "pumpkin" <billowr...@att.net> wrote: > yep pumpkin, did you see the link to Jon Kabat-Zinn's book, "Full Catastrophe Living. Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness" ? http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122 It's a classic, I should think a good library would carry it. "The book goes into detail about how hospital patients have either improved their health or simply come to feel better despite their illness by using these techniques, but these meditations can help anyone deal with stress and gain a calmer outlook on life. "When we use the word healing to describe the experiences of people in the stress clinic, what we mean above all is that they are undergoing a profound transformation of view," Kabat-Zinn writes. "Out of this shift in perspective comes an ability to act with greater balance and inner security in the world." Ixia > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > > > Perhaps "with a human we must prolong the torture"? Each of us can end > > our torture any time we choose to - up to the point when we are too > > weak, mentally and/or physically. > my library does have it but there are EIGHTEEN people in line in front of > me! That's too bad. I think you'd get something out of it. > imagine, others with stress? Chodron's book has helped me quite a > bit....so far so good. She is good. Try: "The Places That Scare You: A Guide to Fearlessness in Difficult Times" and "The Wisdom of No Escape and the Path of Loving Kindness". > but then, I've had 2.5 non-sick days in a row, and > cool weather....definitely factors in my favor! Hope both will last for a while. Ixia > On Jul 4, 1:01 pm, "pumpkin" <billowr...@att.net> wrote:> yep > [quoted text clipped - 23 lines] > > > our torture any time we choose to - up to the point when we are too > > > weak, mentally and/or physically. I read bits and pieces in several books at the Goodwill store today, LOL, the self-help shelf was full. A lot of it is tripe and makes me kick myself for my failure to publish books.....I have four-five-six of them, and demand; but I just don't do it. the books have been helpful. I think Carnegie is still probably my bible, LOL, but Chodron's book has VERBATIM some things I wrote in my own journal years and years ago, thinking I had come up with them myself, how silly.....like George Harrison and his "new" song....thanks for the recommendations. On Jul 6, 7:10 pm, "pumpkin" <billowr...@att.net> wrote: > my library does have it but there are EIGHTEEN people in line in front of > me! That's too bad. I think you'd get something out of it. > imagine, others with stress? Chodron's book has helped me quite a > bit....so far so good. She is good. Try: "The Places That Scare You: A Guide to Fearlessness in Difficult Times" and "The Wisdom of No Escape and the Path of Loving Kindness". > but then, I've had 2.5 non-sick days in a row, and > cool weather....definitely factors in my favor! Hope both will last for a while. Ixia > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 26 lines] > > > our torture any time we choose to - up to the point when we are too > > > weak, mentally and/or physically. > I read bits and pieces in several books at the Goodwill store today, LOL, > the self-help shelf was full. A lot of it is tripe and makes me kick myself > for my failure to publish books.....I have four-five-six of them, and > demand; but I just don't do it. But that's the point - as Gandhi thought, wrote and lived out: "Be the change you want". > the books have been helpful. I think Carnegie is still probably my bible, > LOL, but Chodron's book has VERBATIM some things I wrote in my own journal > years and years ago, ahem... just one teensy weensy difference, she's happy and you're not! ;-) Ixia But that's the point - as Gandhi thought, wrote and lived out: "Be the change you want". not a big fan of that quotation. it's like the golden rule; if I treat people the way I want to be treated, they don't like it. > the books have been helpful. I think Carnegie is still probably my bible, > LOL, but Chodron's book has VERBATIM some things I wrote in my own journal > years and years ago, ahem... just one teensy weensy difference, she's happy and you're not! ;-) I didn't suggest any similarities between us (after all, she lives in a Tibetan monastery, and I don't; she has published books and, urgh, I haven't; she probably doesn't wear three-inch heels, dance in grocery stores, or bite her nails either. oh wait, and has she had cancer? does she have an autistic kid?). She believes a lot of things I don't. I just thought it was comical to read phrases that echoed some of my own. and I don't think she's happy, because happiness isn't the goal. I do know she isn't UNhappy. at least I think so. Ixia > > But that's the point - as Gandhi thought, wrote and lived out: "Be the > > change you want". > > not a big fan of that quotation. I find it helpful, but I think I understand it differently from you. > it's like the golden rule; if I treat > people the way I want to be treated, they don't like it. No, they are not you, they have very different preferences and needs. But that's not how I understand Gandhi. The way I see it, his ideas and writings can be quite inspiring, but what made him so powerful to my thinking is the way he /practiced/ what he thought and spoke. The proof is in the pudding :-) He also put it this way: "There is no way to peace. Peace is the way." Obviously lots of people don't agree, and find the idea downright laughable. > > the books have been helpful. I think Carnegie is still probably my bible, The whole "How to Win Friends and Influence People" movement strikes me as a little bit scary, so I have never looked into it. > > LOL, but Chodron's book has VERBATIM some things I wrote in my own journal > > years and years ago, [quoted text clipped - 8 lines] > have an autistic kid?). She believes a lot of things I don't. I > just thought it was comical to read phrases that echoed some of my own. I understood that, I'm not trying to say that I think people have to live lives of renunciation, like Gandhi and Chodron. I was thinking that she, like Gandhi, does more than write books, she lives her teachings, practices what she preaches, /and it works for her/. > and I don't think she's happy, because happiness isn't the goal. True, it's not the goal, but I think it's a side-effect. Not as in deliriously cheerful, but as in deeply enjoying peace and equanimity. Ixia "If you knew what I know about the power of giving, you would not let a single meal pass without sharing it in some way." ~ Buddha definitely not "how to win friends," I haven't read that one! the bible is "How to stop worrying and start living." my 95-cent copy is heavily highlighted. it's all derivative stuff, back to Confucius and Aristotle and Plato and....up through Mellon and others.... I was thinking that she, like Gandhi, does more than write books, she lives her teachings, practices what she preaches, /and it works for her/. I know. as my son's therapist used to say, hooray for doing what works. ;-) what I meant was: "Be the change you want to have in your pocket." But that's the point - as Gandhi thought, wrote and lived out: "Be the change you want". > the books have been helpful. I think Carnegie is still probably my bible, > LOL, but Chodron's book has VERBATIM some things I wrote in my own journal > years and years ago, ahem... just one teensy weensy difference, she's happy and you're not! ;-) Ixia >>> That didn't mean I didn't love her. If we have a dog that is dying, we >>> can end its suffering, but with a human we must prolong the torture. >> >> not so. >> > What is not so? it is "not so" that we must prolong the torture of a human. >>>> That didn't mean I didn't love her. If we have a dog that is dying, we >>>> can end its suffering, but with a human we must prolong the torture. [quoted text clipped - 5 lines] > > I mean that is the legal position, not what actually happens. We "must" doesn't mean we "do". We "must" obey speed limits too. But it is what actually happens if the patient goes to law to attempt to protect their carers and would-be co-conspirators. Tim ... > It is tempting to keep your diagnosis a secret, especially from young > children, making the excuse that you are protecting their feelings. They should be learning about everything in our world. I know some mothers who protect their boys from the harsh realities of cooking, washing etc. > When my wife got to stage IV, I was very glad we had told our daughter, > who had only been four when her mother was first diagnosed, what was going [quoted text clipped - 4 lines] > leave it, so it is always best dealt with as immediately as possible. Even > to four year-olds. I agree wholeheartedly. I was chastised by fellow patients when our grandchildren visited me after a craniotomy when I was balk with staples in my hea#d and tubes coming from everywhere. They were fascinated and loved counting the staples. Not at all frightned. Children are a lot tougher than we think - if they've been brought up to know everything. Mary <<... I'm not sure if I'll be able to have an implant, due to all the radiation. The burns have healed, but the whole area is still uncomfortable enough that the thought of stretching implants is very upsetting. I have been reading about trans and diep flaps, but I simply can't face a major operation yet.>> ---------------- I was where you are in 2005. I had to wait an entire year to have reconstruction. I did have an implant, because the plastic surgeon claimed I didn't have enough belly to make a complete breast! (I'm still shaking my head over that one--from my point of view I've got plenty of excess belly to spare.) I had a latissimus flap over an implant. I'm basically happy with it, but there's a lot of scarring evident, and when I'm naked it doesn't look like my remaining breast. But when I remember what a nuisance it was to live with a removable prosthesis, I'm glad I did it. It's no walk in the park, though. It's major surgery with pain and risk of infection and everything else that goes along with it. Take your time and continue your research to come up with a decision you're comfortable with. Eva > I was where you are in 2005. I had to wait an entire year to have > reconstruction. I did have an implant, because the plastic surgeon claimed [quoted text clipped - 3 lines] > > I had a latissimus flap over an implant. I didn't know they did flap over implant. I thought it was one or the other. > I'm basically happy with it, but > there's a lot of scarring evident, and when I'm naked it doesn't look like > my remaining breast. But when I remember what a nuisance it was to live > with a removable prosthesis, I'm glad I did it. I don't really mind the prosthesis at this point. I had to stop wearing it while I was finishing radiation, and for a while after, as the burns healed. I'm just so happy to be able to go out and look normal in my clothes again. > It's no walk in the park, though. It's major surgery with pain and risk of > infection and everything else that goes along with it. > > Take your time and continue your research to come up with a decision you're > comfortable with. Thank you, I will. I have a younger friend who had a mastectomy 7 years ago, in her early 30's. She has never had a reconstruction of any kind. She is quite comfortable and happy with herself, and she looks beautiful. It's about 6 months since my operation now. I am somewhat tempted both by the possibility of the "tummy tuck" you get with a diep flap, and also with the lift etc. they could do on my other breast, but I'm not sure I can /choose/ more pain at this point, and being out of commission again. Also, I'm more than a little afraid of what a reconstruction could hide. I just had a lump taken out of the mastectomy scar. It turned out to be nothing but a suture granuloma, but it could have been something else. I like being able to see and feel what's going on, even if it's not pretty ;-) Ixia On Jun 6, 10:27 pm, "R. Fizek" <fizkow...@verizon.net> wrote: > ... Sadly enough, because in spite of all the talk about "winning", "battles" and "bravery", we are all going to die, cancer or not. We can not be fully and vibrantly alive until we accept and embrace life on it's own terms - and cancer is part of that, dying is part of that. Pain is part of that. Being afraid is part of that. Also Joy, Love, Hope. Well said. Sunshine, friends, good books, art, music... > "many don't realize that late-stage patients feel shut out by many breast cancer support groups, Corneliussen-James said.??Women with incurable cancer often hold back at meetings because they don't want to depress or frighten other women who are newly diagnosed, Corneliussen-James said. Some groups have gone further, she said, asking late-stage breast cancer patients not to attend their meetings. That's absolutely disgraceful! I'm not a member of such a group but if I were and that was the policy I've move the Earth to change it. Mary > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 9 lines] > I'm not a member of such a group but if I were and that was the policy I've > move the Earth to change it. Amen. Ixia > Mary |
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