Oct. 9 Forum

eihtak

LaCh said:

eitak

I think I'd have to be a death's door before I returned to a doctor, any doctor, for any reason and by then it'd be too late anyway, so no point in going.  I'm done with doctors. Maybe I'm just having a bad few days, I dunno.

LaCh.....

I always find it interesting how our opinions in life are formed. So many things contribute. I have never really had a negative experience with my health care, but that being said if I had or if I do, my opinion is open for change. If I had had some of the experiences you have posted about along with an already established non-fan of western medicine, I'd think the same as you. I am no more right than you are wrong.........you never know who may answer when you knock on that door!

mp327

db8ne1 said:

URL for article "How Doctors Die"

Here is the link to the article you mentioned:

 

http://thehealthcareblog.com/blog/2012/08/06/how-doctors-die/

 

 

db8ne1

• Thanks for posting the link to this article.  I'm not sure it's the same one I read awhile back, but the opinion of this author is the same as in the article I read.  I think it's important that everyone who wishes not to be brought back to life, so to speak, when there is no hope for a good recovery and it is only putting off death for a short time with no quality of life, that they make sure to complete a DNR (Do Not Resuscitate) form.

LaCh

mp327 said:

db8ne1

• Thanks for posting the link to this article.  I'm not sure it's the same one I read awhile back, but the opinion of this author is the same as in the article I read.  I think it's important that everyone who wishes not to be brought back to life, so to speak, when there is no hope for a good recovery and it is only putting off death for a short time with no quality of life, that they make sure to complete a DNR (Do Not Resuscitate) form.

you need more

Having a DNR isn't enough. You need to fill out a MOLST (Medical Orders for Life-Sustaining Treatment). I think that they differ from state to state or maybe MOLST only pertains to NY State, I'm not sure. For those with family, a health care proxy is also advised.

Marynb

LaCh said:

everyone is different, as it should be

I never want to consider a hospital a second home, but that's just because my take is, "when it's over, it's over and I'm ready to move on so lemme outta here." That said, I understand what you mean when you describe feeling looked after, and that you have people who might happen to be centrally located (in a hospital) who care about you and your well being.  When I initially entered Sloan Kettering the other day for the talk that was given, I felt like the building was filled with people who might have an idea about those sorts of things. I'm sure that they do, but Sloan Kettering, I think, is about aggressive treatment for cancer, and it seems to come back to doing something, doing a little something or doing nothing, and the latter two options aren't something that Sloan Kettering does (I don't think...I could be wrong). It was the doctor's response to my question regarding very slow gut motility that  made me realize that  if I was looking for something that resonated for me, something that made sense to me, that Sloan Kettering probably wasn't the place that I was going to find it. I like sympathy as much as the next person, but ok, that's enough, now let's just deal with the issues.  As I said, I'm an odd duck, I guess.

Thinking about sympathy
Well, I don't like sympathy. I don't really think anyone who knows me would ever feel sorry for me. I love life too much and I feel joy every single day! I do appreciate empathy and understanding. I will tell you that there are times that doctors are honest with patients and do not advocate treatments that will not significatly extend life. Happens every day of the week at Sloan Kettering and other cancer hospitals. I lost my best friend to ovarian cancer almost 2 years ago. The doctors were very honest with her and did not recommend anything but palliative care. She was brave and courageous and died with great dignity. I watched her suffer pain that is beyond my comprehension and never once did she complain. Not once. When my time comes, I pray that I can be as brave as she was.

I am truly sorry that you had a hard time with your doctors and are suffering from the after effects of treatments for anal cancer. I like your attitude that for you , it is over! It must feel great having cancer a thing of the past!

LaCh

Marynb said:

Thinking about sympathy
Well, I don't like sympathy. I don't really think anyone who knows me would ever feel sorry for me. I love life too much and I feel joy every single day! I do appreciate empathy and understanding. I will tell you that there are times that doctors are honest with patients and do not advocate treatments that will not significatly extend life. Happens every day of the week at Sloan Kettering and other cancer hospitals. I lost my best friend to ovarian cancer almost 2 years ago. The doctors were very honest with her and did not recommend anything but palliative care. She was brave and courageous and died with great dignity. I watched her suffer pain that is beyond my comprehension and never once did she complain. Not once. When my time comes, I pray that I can be as brave as she was.

I am truly sorry that you had a hard time with your doctors and are suffering from the after effects of treatments for anal cancer. I like your attitude that for you , it is over! It must feel great having cancer a thing of the past!

marynb....it must feel

yes, it suppose it feels good but I never really saw it as ... I dunno, it's hard to explain. It's not like some great weight has been lifted because I never experienced it as a great weight. It was a problem to be dealt with, I dealth with it, and that's that.  It's not like I felt like I received a pardon from the governor when I was looking into the jaws of death, because I never felt like I was looking into the jaws of death. And if it had turned out that I was, then I was. I love life as much as the next person (or as much as those who do) and I'm not eager to die, but because I believe in the survival of consciousness beyond death and because I believe in the cycle of reincarnation, although I'm not quite ready to pack it in yet, if it's time, it's time, and then the rest will unfold (according to what I believe happens). I also hope, like you, that when that time does come that I handle it with grace and dignity.  I had a preference for the way the thing would turn out but I was ok whichever way that it went, so in  that way, yes, I'm glad, but I wouldn't say that it feels great that it's over because I don't think about it and the truth is, I hardly remember it. I don't know why; if I reach back for the memories, they're there, but I can't resurrect the experience in my memory beyond mere facts, and so maybe for that reason, I don't feel like, "Heeeeeyyyy, it's over!"  It's more like, "well, ok, on to the next thing." Also, there's this: all the people who I love and who loved me have already died; my partents, and also, the love of my life, and since I believe that consciousness survives death, I'm pulled at least as strongly toward that eventuality as I am towards delaying it.  So, what I'd say is that my life's circumstances and my belief system form my attitudes about many things, including cancer and death.... but that's true for everybody, no?

mp327

LaCh said:

you need more

Having a DNR isn't enough. You need to fill out a MOLST (Medical Orders for Life-Sustaining Treatment). I think that they differ from state to state or maybe MOLST only pertains to NY State, I'm not sure. For those with family, a health care proxy is also advised.

LaCh

When I googled MOLST, the only states I could find that use it are New York and possibly Maryland.  I'm not familiar with it. 

sandysp

LaCh said:

eitak

I think I'd have to be a death's door before I returned to a doctor, any doctor, for any reason and by then it'd be too late anyway, so no point in going.  I'm done with doctors. Maybe I'm just having a bad few days, I dunno.

Anger

LaCh,

I was there and thought it was a terrific forum. I am sorry it did not address your concerns. Although the sexual functioning or emotional part of the forum wasn't satisfactory for you, I am sure a great number of people benefited from the survivors who shared as well as the professionals who gave their presentations. I was deeply moved by all five of them. I also am pleased Dr. Carter is going to post her Power Point presentation on the Sloan Kettering Web Site.

When I read your posts, I heard your anger, which you don't seem to think is toward the cancer, but you direct your anger toward the doctors and medicines that cured you which is weird to me. . . So the doctor who figured out exactly how to get the radiation machine targeted to all the right spots through his knowledge of mathematics and physics to save our lives look at us like we are nuts when we talk about things that won't kill us? They have to do the complex computations for the next cancer patient waiting at the door for their cure! That's what they live to do and God bless them!

MSK has a rehabilitative care program which addresses issues the oncologists and radiologists really don't have the expertise to go into. I learned from this board to ask for more help with a specific request for Physical Therapy and I got what I needed.

My radiation team all looked like angels to me, but after saving your life, my radiologist said "take some motrin" for the stiffness.He clearly wasn't interested. But the rehabilitative section at 515 Madison is headed by doctors, Neuro Physiologists who are dealing in natural healing ways with the side affects of treatment which for me turned out to be lymphedema, not to be healed by Motrin, when I complained with my right leg.

I didn't bring up Lymphedema because there could have been an entire forum on just that one subject. We are all different but the treatment we had works and I am extremely grateful to Western and Eastern medicine. Anal cancer is so painful and the horrible pain I suffered daily is now relieved and I look and feel better than I have in years. If you didn't suffer discomfort beforehand and are suffering it now, then you can't appreciate how severe cancer pain is. Believe me, we benefit by getting whatever treatment we can to escape the pain of cancer. Try to focus on getting someone who did not treat you for cancer to help you with the digestive issues you are having, like a good GI.

They admitted they are learning from us. We all need each other. There are only 7,000 cases a year of this cancer. Just getting us together was a terrific thing for them to do, not to mention sharing all the information they have gathered and what works to help people with the sexual issues. I am proof that if you follow the rehabilitative programs they offer, you do get a lot of what was lost back. It takes time and effort and commitment to making wise decisions for my body daily.

I have to say I love my doctors and all my caregivers at MSK. When it comes to cancer, they are in it to win. Their slogan "where you are treated first makes all the difference" is so true. Two doctors told me I needed surgery right away. I am so glad I worked hard to get my butt (pardon the pun) in their door. I remember the Radiologist at the forum saying that our treatment is the most "hellish" but at least it is of relatively short duration. So true. I was glad to hear that it was "hellish" from her. That was certainly what I remember about it. But they are using equipment and techniques that are working better than ever before with less damage to surrounding tissue and went into some detail about that. As time goes by, things are getting better for those who come after us in spite of the lack of funding for Anal Cancer research.

So, I am really glad I went. It is true this board offers everything that was there except the actual human presence of a room of survivors and providers of our cancer treatments. That is what they provided us as well as good information and I appreciated it very much. I wish we could have all been there together because that to me was what it was about.

Sincerely,

Sandy

sandysp

mp327 said:

LaCh

When I googled MOLST, the only states I could find that use it are New York and possibly Maryland.  I'm not familiar with it. 

Paliative Care

We are big believers that there are times and circumstances when it is best to ask for Paliative care. A lot of people think MSK is aggressive in fighting cancer and they are but they also listen and have a good paliative care program. I was so sick when I was diagnosed I signed up for it but they convinced me that the odds were I would feel better if I stuck it out through the treatment and they were right. They never let on it seemed odd someone who went to all the trouble to get into MSK for treatment would then ask for Palliative care:-)

Our two dogs are both hospice therapy dogs. We don't go into the city to do it but my husband takes them every week to a local rehabilitative care hospital that offers hospice to those who are in the program and to private homes. I mostly just contribute by giving them their baths beforehand.

This board is so full of help, support, friendship and information. I don't sign on more because I know I'll spend hours here when I do!

Fondly,

Sandy

LaCh

sandysp said:

Anger

LaCh,

I was there and thought it was a terrific forum. I am sorry it did not address your concerns. Although the sexual functioning or emotional part of the forum wasn't satisfactory for you, I am sure a great number of people benefited from the survivors who shared as well as the professionals who gave their presentations. I was deeply moved by all five of them. I also am pleased Dr. Carter is going to post her Power Point presentation on the Sloan Kettering Web Site.

When I read your posts, I heard your anger, which you don't seem to think is toward the cancer, but you direct your anger toward the doctors and medicines that cured you which is weird to me. . . So the doctor who figured out exactly how to get the radiation machine targeted to all the right spots through his knowledge of mathematics and physics to save our lives look at us like we are nuts when we talk about things that won't kill us? They have to do the complex computations for the next cancer patient waiting at the door for their cure! That's what they live to do and God bless them!

MSK has a rehabilitative care program which addresses issues the oncologists and radiologists really don't have the expertise to go into. I learned from this board to ask for more help with a specific request for Physical Therapy and I got what I needed.

My radiation team all looked like angels to me, but after saving your life, my radiologist said "take some motrin" for the stiffness.He clearly wasn't interested. But the rehabilitative section at 515 Madison is headed by doctors, Neuro Physiologists who are dealing in natural healing ways with the side affects of treatment which for me turned out to be lymphedema, not to be healed by Motrin, when I complained with my right leg.

I didn't bring up Lymphedema because there could have been an entire forum on just that one subject. We are all different but the treatment we had works and I am extremely grateful to Western and Eastern medicine. Anal cancer is so painful and the horrible pain I suffered daily is now relieved and I look and feel better than I have in years. If you didn't suffer discomfort beforehand and are suffering it now, then you can't appreciate how severe cancer pain is. Believe me, we benefit by getting whatever treatment we can to escape the pain of cancer. Try to focus on getting someone who did not treat you for cancer to help you with the digestive issues you are having, like a good GI.

They admitted they are learning from us. We all need each other. There are only 7,000 cases a year of this cancer. Just getting us together was a terrific thing for them to do, not to mention sharing all the information they have gathered and what works to help people with the sexual issues. I am proof that if you follow the rehabilitative programs they offer, you do get a lot of what was lost back. It takes time and effort and commitment to making wise decisions for my body daily.

I have to say I love my doctors and all my caregivers at MSK. When it comes to cancer, they are in it to win. Their slogan "where you are treated first makes all the difference" is so true. Two doctors told me I needed surgery right away. I am so glad I worked hard to get my butt (pardon the pun) in their door. I remember the Radiologist at the forum saying that our treatment is the most "hellish" but at least it is of relatively short duration. So true. I was glad to hear that it was "hellish" from her. That was certainly what I remember about it. But they are using equipment and techniques that are working better than ever before with less damage to surrounding tissue and went into some detail about that. As time goes by, things are getting better for those who come after us in spite of the lack of funding for Anal Cancer research.

So, I am really glad I went. It is true this board offers everything that was there except the actual human presence of a room of survivors and providers of our cancer treatments. That is what they provided us as well as good information and I appreciated it very much. I wish we could have all been there together because that to me was what it was about.

Sincerely,

Sandy

sandy

That's why other people who attended need to post their take on it. I can only post my own. I'm glad that you found it helpful.

Marynb

LaCh said:

marynb....it must feel

yes, it suppose it feels good but I never really saw it as ... I dunno, it's hard to explain. It's not like some great weight has been lifted because I never experienced it as a great weight. It was a problem to be dealt with, I dealth with it, and that's that.  It's not like I felt like I received a pardon from the governor when I was looking into the jaws of death, because I never felt like I was looking into the jaws of death. And if it had turned out that I was, then I was. I love life as much as the next person (or as much as those who do) and I'm not eager to die, but because I believe in the survival of consciousness beyond death and because I believe in the cycle of reincarnation, although I'm not quite ready to pack it in yet, if it's time, it's time, and then the rest will unfold (according to what I believe happens). I also hope, like you, that when that time does come that I handle it with grace and dignity.  I had a preference for the way the thing would turn out but I was ok whichever way that it went, so in  that way, yes, I'm glad, but I wouldn't say that it feels great that it's over because I don't think about it and the truth is, I hardly remember it. I don't know why; if I reach back for the memories, they're there, but I can't resurrect the experience in my memory beyond mere facts, and so maybe for that reason, I don't feel like, "Heeeeeyyyy, it's over!"  It's more like, "well, ok, on to the next thing." Also, there's this: all the people who I love and who loved me have already died; my partents, and also, the love of my life, and since I believe that consciousness survives death, I'm pulled at least as strongly toward that eventuality as I am towards delaying it.  So, what I'd say is that my life's circumstances and my belief system form my attitudes about many things, including cancer and death.... but that's true for everybody, no?

LaCh
I do understand your feelings and I am a Christian, so I too believe in lfe after death. I am just not ready to leave this earth! I have a beautiful daughter and I am not done with my job here!

LaCh

Marynb said:

LaCh
I do understand your feelings and I am a Christian, so I too believe in lfe after death. I am just not ready to leave this earth! I have a beautiful daughter and I am not done with my job here!

umm.... ok. 

umm.... ok. 

islandgirlculebra

sandysp said:

Anger

LaCh,

I was there and thought it was a terrific forum. I am sorry it did not address your concerns. Although the sexual functioning or emotional part of the forum wasn't satisfactory for you, I am sure a great number of people benefited from the survivors who shared as well as the professionals who gave their presentations. I was deeply moved by all five of them. I also am pleased Dr. Carter is going to post her Power Point presentation on the Sloan Kettering Web Site.

When I read your posts, I heard your anger, which you don't seem to think is toward the cancer, but you direct your anger toward the doctors and medicines that cured you which is weird to me. . . So the doctor who figured out exactly how to get the radiation machine targeted to all the right spots through his knowledge of mathematics and physics to save our lives look at us like we are nuts when we talk about things that won't kill us? They have to do the complex computations for the next cancer patient waiting at the door for their cure! That's what they live to do and God bless them!

MSK has a rehabilitative care program which addresses issues the oncologists and radiologists really don't have the expertise to go into. I learned from this board to ask for more help with a specific request for Physical Therapy and I got what I needed.

My radiation team all looked like angels to me, but after saving your life, my radiologist said "take some motrin" for the stiffness.He clearly wasn't interested. But the rehabilitative section at 515 Madison is headed by doctors, Neuro Physiologists who are dealing in natural healing ways with the side affects of treatment which for me turned out to be lymphedema, not to be healed by Motrin, when I complained with my right leg.

I didn't bring up Lymphedema because there could have been an entire forum on just that one subject. We are all different but the treatment we had works and I am extremely grateful to Western and Eastern medicine. Anal cancer is so painful and the horrible pain I suffered daily is now relieved and I look and feel better than I have in years. If you didn't suffer discomfort beforehand and are suffering it now, then you can't appreciate how severe cancer pain is. Believe me, we benefit by getting whatever treatment we can to escape the pain of cancer. Try to focus on getting someone who did not treat you for cancer to help you with the digestive issues you are having, like a good GI.

They admitted they are learning from us. We all need each other. There are only 7,000 cases a year of this cancer. Just getting us together was a terrific thing for them to do, not to mention sharing all the information they have gathered and what works to help people with the sexual issues. I am proof that if you follow the rehabilitative programs they offer, you do get a lot of what was lost back. It takes time and effort and commitment to making wise decisions for my body daily.

I have to say I love my doctors and all my caregivers at MSK. When it comes to cancer, they are in it to win. Their slogan "where you are treated first makes all the difference" is so true. Two doctors told me I needed surgery right away. I am so glad I worked hard to get my butt (pardon the pun) in their door. I remember the Radiologist at the forum saying that our treatment is the most "hellish" but at least it is of relatively short duration. So true. I was glad to hear that it was "hellish" from her. That was certainly what I remember about it. But they are using equipment and techniques that are working better than ever before with less damage to surrounding tissue and went into some detail about that. As time goes by, things are getting better for those who come after us in spite of the lack of funding for Anal Cancer research.

So, I am really glad I went. It is true this board offers everything that was there except the actual human presence of a room of survivors and providers of our cancer treatments. That is what they provided us as well as good information and I appreciated it very much. I wish we could have all been there together because that to me was what it was about.

Sincerely,

Sandy

Thanks....

Thanks Sandy for another perspective. Sounds like MSK has a great rehabilitative care program. Wish they had something like that at the hospital where I was treated. I, like you, am grateful that my cancer was eradicated, and my side effects are relatively mild compared to some others on this board..... I have been disappointed by the lack of response to my comments & questions regarding long-term side effects, but have finally come to realize it's just not their focus; they've treated me, gotten rid of the cancer, and they've got many more patients to worry about........... Please let us know if you become aware when the forum presentation is posted to the website. I would be interested in checking it out.

Marynb

sandysp said:

Paliative Care

We are big believers that there are times and circumstances when it is best to ask for Paliative care. A lot of people think MSK is aggressive in fighting cancer and they are but they also listen and have a good paliative care program. I was so sick when I was diagnosed I signed up for it but they convinced me that the odds were I would feel better if I stuck it out through the treatment and they were right. They never let on it seemed odd someone who went to all the trouble to get into MSK for treatment would then ask for Palliative care:-)

Our two dogs are both hospice therapy dogs. We don't go into the city to do it but my husband takes them every week to a local rehabilitative care hospital that offers hospice to those who are in the program and to private homes. I mostly just contribute by giving them their baths beforehand.

This board is so full of help, support, friendship and information. I don't sign on more because I know I'll spend hours here when I do!

Fondly,

Sandy

Palliative care
Sandy, when my friend went to MSK, she did not know there was nothing that could be done to save her life. Most people go to cancer hospitals looking for some hope. Palliative care is sometimes all they can offer.