One of Those Overwhelming Days - Time to Shutdown, Sigh

13

Comments

  • larry59
    larry59 Member Posts: 41
    #42
    blueroses said:

    Shutdown, gear up, Shutdown, gear up, Shutdown, yada yada
    I started this discussion point back in October I think at a time when it was that overwhelming time for me that we have all discussed so often and from so many different angles. Climbed out of it with the help of the site and all of you and last week - KABOOM, back into it with the start of some lower back pain from HELL. Had no idea what the heck this was now, never felt anything like it in my life. Had to call an ambulance and off I went to the E.R. writhing in pain the whole way. Got there and started on morphine and after several tests and a CT oh joy of joy A FREAKIN KIDNEY STONE. GRRRRRRRRRRRRR. Just what I needed, another screwed up body part and yippee a new specialist to add to the list - a Urologist. The pain knocked me out for a couple of days on and off and it has gone a few days ago but I am just drained. Now the procedures are building up again, some still postponed from the last overwhelming grouping of them - colonoscopy, nail surgery, blah blah blah - tack on another procedure what the heck. So back into the world of overwhelmed, things have been at a total standstill since the stone reared it's ugly form. I am sleeping most of the day and dread the next docs trip, which is tomorrow, the Urologist - joy. Feeling faint at times when I try to do anything around the house, not sure why, just too much methinks. Not sure when I will be on next. Take care all, there have been some great postings, keep up the support, we all need it from time to time. Hugs all around.

    P.S. FYI the ER doc told me that with lymphoma patients kidney stones are more common than in other groups, great. Sigh. He was going on about lymphoma patients not being able to process calcium in the same way or something but I was in so much pain I wasn't computing much other than in lymphoma patients it's more common to get the stones. Pencil in another after effect, anyone got a longer pad of paper? Sigh.

    P.P.S. On the upside of this visit to the ER I have to say it was one of the better visits in I don't know how long. All went well from the fact that it was a weekend, usually not a good thing with all the eager young residents, to the ambulance drivers to the nurses. Even though I was in there for almost 8 hours things went smoothly which is pretty much a miracle since I overheard a doc say that there were no more beds left in the hospital at all, even ICU -all filled. He said that there were stretchers down every hall as well, sheeesh. I was lucky to get into the ER at all, if I had come by cab I would have been writhing on the floor in the waiting area no doubt but the ambulance got me straight in. Just a little aside.

    Hi cat and everyone
    I feel so lucky that today is a good day for me. Only one pain pill necessary. I truly wish that everyone here could have more good days.
    Shirley, please keep up with optimisim as much as possible. There's a positive side to everything but sometimes you have to search deep for it.
    And Cat, I know k stones are an extremely painful problem. Hope they fix yours quickly. Sometimes if you a very lucky they pass all by themselves, hope that's the case for you.
    Any everyone else, I really wish there was some way to physically give hugs, pats on the back, offer an encouraging or comforting word. Guess this site is as close to that as we can come.
    You folks are the best, hang in there, don't give up, and please let's stay in touch at least through this site. The chat room(s) are helpful too.
  • JH32
    JH32 Member Posts: 19
    #43
    nsquirrely said:

    Time to shut down
    Jim
    Thank you so much for your encouraging words. I have found that posting my thoughts and feelings here has helped me to put a lot of things in perspective. Just writing back to someone who is having a bad day can change my atitude. A light bulb comes on and you realize that You've had those same feelings and the encouragement you give to another person helps you as well. I'm doing better not great but everything I've read and written here has given me a better view of things
    Hugs and prayers
    Shirley

    Caring
    Shirley-
    If there is one thing I'm grateful for in getting cancer it is that it has reinforced to me how good and kind people really are. All of the posts back and forth are so caring that it truly touches me. It feels like each of us wants to reach through the computer and just take away the others pain. Wish it could work like that.
    Hugs and prayers back at you- Jim
  • nsquirrely
    nsquirrely Member Posts: 50
    #44
    JH32 said:

    Caring
    Shirley-
    If there is one thing I'm grateful for in getting cancer it is that it has reinforced to me how good and kind people really are. All of the posts back and forth are so caring that it truly touches me. It feels like each of us wants to reach through the computer and just take away the others pain. Wish it could work like that.
    Hugs and prayers back at you- Jim

    Caring
    Jim
    I can honestly say that last year during the worst part of this journey, when I was housebound, that having this site was a life saver for me emotionally. Being single and living alone is perhaps one of the hardest elements of surviving this disease. I had my family and friends to help and they were great but when I found myself feeling all alone and vulnerable it was this site that helped me thru it. The people in the the chat room were my saving grace. Now that the worst is over, so to speak, I'm finding that the discussion boards add yet another source of support. I've always been a homebody. My family which consists of my children and grandchildren plus the people I work with have been my contact with the outside world. I've always found it hard to go out into the world to meet others. I enjoy new people but putting myself in a new eviroment is difficult for me. I have had trouble over the years with anxiety and panic and even though I have conquered it to a degree it still lingers when it comes to putting myself in any new situation. I wasn't able to find any local support groups for cancer. It seems those types of groups are only in the city which is and was too far for me to travel. Like you there is a need to be able to reach out to the people I have meet here and only wish that was possible. It would be nice to have all of us in one big room for a big hug and lots of conversation.
    Hugs and prayers
    Shirley
  • blueroses
    blueroses Member Posts: 524
    #45
    larry59 said:

    Hi cat and everyone
    I feel so lucky that today is a good day for me. Only one pain pill necessary. I truly wish that everyone here could have more good days.
    Shirley, please keep up with optimisim as much as possible. There's a positive side to everything but sometimes you have to search deep for it.
    And Cat, I know k stones are an extremely painful problem. Hope they fix yours quickly. Sometimes if you a very lucky they pass all by themselves, hope that's the case for you.
    Any everyone else, I really wish there was some way to physically give hugs, pats on the back, offer an encouraging or comforting word. Guess this site is as close to that as we can come.
    You folks are the best, hang in there, don't give up, and please let's stay in touch at least through this site. The chat room(s) are helpful too.

    Thanks Larry
    I am sooooooooo glad that today is a good one for you, we have to cherish those and try to remember them when we have a rocky day.

    Thanks for your good wishes on my stupid kidney stone fiasco, since the problem started last week it seems my whole condition has changed - feel awful, pain has passed, but just generally feel so rotten. I wonder if the extreme pain changes you in some way, or maybe it's just the trauma of 'one more freakin thing'. Couldn't get to my specialist appointment today, can't seem to stay up for long til 2 in the afternoon - strange new developments since the stone. Odd. Anywho, this gives me a whole new take on the expression 'this too shall 'pass' ha, ha, ha. Take care Larry and hope tomorrow is just as good for you as today was. Hugs, Cat.
  • hollyberry
    hollyberry Member Posts: 173
    #46
    Shutting Down
    Dear Blue,
    I just have to say that I have at least one of those days every month- between the 4 surgeries, the chemo, the metastases, the clinical trial, the endless CT's, blood work,"supportive family and friends" and fighting with the insurance company, hospital billing dept. , "busy doctors" and snippy 12 year old nurses, I have to "go away for a little while" either by reading a book, going for coffee or just taking a nice long nap. I believe it is a part of coping with this crappy situation; I didn't ask for it and I'm supposed to be strong for my family and friends, as they have always seen me that way and become very uncomfortable when I tell them just how bad some days are. All of you have helped me tremendously and there is no way my nearest and dearest can ever truly understand all that we have to deal with, but you do! That helps more than anything- I love all of you and thank you for pulling me out of the pit every time I read your posts and know that you care for me and all of the people in our position. Thank you, thank you, thank you!!
    I think I can take one more straw-
    Hollyberry
  • blueroses
    blueroses Member Posts: 524
    #47
    hollyberry said:

    Shutting Down
    Dear Blue,
    I just have to say that I have at least one of those days every month- between the 4 surgeries, the chemo, the metastases, the clinical trial, the endless CT's, blood work,"supportive family and friends" and fighting with the insurance company, hospital billing dept. , "busy doctors" and snippy 12 year old nurses, I have to "go away for a little while" either by reading a book, going for coffee or just taking a nice long nap. I believe it is a part of coping with this crappy situation; I didn't ask for it and I'm supposed to be strong for my family and friends, as they have always seen me that way and become very uncomfortable when I tell them just how bad some days are. All of you have helped me tremendously and there is no way my nearest and dearest can ever truly understand all that we have to deal with, but you do! That helps more than anything- I love all of you and thank you for pulling me out of the pit every time I read your posts and know that you care for me and all of the people in our position. Thank you, thank you, thank you!!
    I think I can take one more straw-
    Hollyberry

    Ditto Hollyberry
    We all have needed help being pulled out of the hole, now and again, and you are so right, the people on this site really know how to do that, up close and personal, cause they have all been there. No one but another survivor truly knows how it really is for us from time to time and we are so fortunate to have a place like this to go to when we need help and understanding. You, through this post, have given me the ability to take one more straw as well Holly. Blessings to you and yours. blueroses.
  • larry59
    larry59 Member Posts: 41
    #48
    blueroses said:

    Ditto Hollyberry
    We all have needed help being pulled out of the hole, now and again, and you are so right, the people on this site really know how to do that, up close and personal, cause they have all been there. No one but another survivor truly knows how it really is for us from time to time and we are so fortunate to have a place like this to go to when we need help and understanding. You, through this post, have given me the ability to take one more straw as well Holly. Blessings to you and yours. blueroses.

    to blueroses and hollyberry
    One of the hardest parts of having cancer is the inability to describe to family, friends and other supporters how you feel on any given day. People are so kind and want to help but they just don't understand. It just makes you feel alone. That is why I have found this site so helpful and of course everyone here wants to support everyone else. All I can say is to hang in, hope for good days, and try to just get through the not-so-good days. I wish the very best for you and everyone else here dealing with health issues.
    Wish I had a better way with words because that is all we have to use to help each other.
    Love to all Larry 59
  • blueroses
    blueroses Member Posts: 524
    #49
    larry59 said:

    to blueroses and hollyberry
    One of the hardest parts of having cancer is the inability to describe to family, friends and other supporters how you feel on any given day. People are so kind and want to help but they just don't understand. It just makes you feel alone. That is why I have found this site so helpful and of course everyone here wants to support everyone else. All I can say is to hang in, hope for good days, and try to just get through the not-so-good days. I wish the very best for you and everyone else here dealing with health issues.
    Wish I had a better way with words because that is all we have to use to help each other.
    Love to all Larry 59

    to Larry59
    What choo talkin bout? lol. You have a great way with words, and besides, we survivors have our own way of saying things that only other survivors can truly understand. It doesn't take many words for us to be able to relate to each other, that's the beauty of it all on this site. Keep on keeping on Larry. Hugs, blueroses.
  • Dreamdove
    Dreamdove Member Posts: 175 Member
    #50
    larry59 said:

    to blueroses and hollyberry
    One of the hardest parts of having cancer is the inability to describe to family, friends and other supporters how you feel on any given day. People are so kind and want to help but they just don't understand. It just makes you feel alone. That is why I have found this site so helpful and of course everyone here wants to support everyone else. All I can say is to hang in, hope for good days, and try to just get through the not-so-good days. I wish the very best for you and everyone else here dealing with health issues.
    Wish I had a better way with words because that is all we have to use to help each other.
    Love to all Larry 59

    Feeling alone except on here
    Before I had cancer (ovarian) I didn't understand how those with cancer felt, even my own mother. I could only imagine. Now, of course, I can relate, even to those who have different types of cancer than mine. People who were cancer survivors would approach me and speak to me when they saw me wearing my "cancer scarf." There was an immediate kind of bond there that I can't even describe. Often people who haven't had cancer try to minimize the cancer. They often assume because you're living your life, walking around, that you must have stage 1; that they caught the cancer very early. Alot of people don't even realize what you've been thru--removal of organs, etc. Like a laser zapped the tumors, no surgery or nothing. Maybe chemo. Everyone has heard about chemo. And then you not only have to stay strong for yourself but stay strong for others. They all want you to stay positive and strong. So, not to let them down, you force yourself to be "fine." Don't mention the nagging fear that it may come back--that's what you have to deal with everyday by yourself. Why burden others with that? It gets to the point where you end up keeping most of your feelings inside. So that is one of the things I like about this website. People can express their feelings, their fears. Plus we encourage and sympathize with one another.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #51
    Dreamdove said:

    Feeling alone except on here
    Before I had cancer (ovarian) I didn't understand how those with cancer felt, even my own mother. I could only imagine. Now, of course, I can relate, even to those who have different types of cancer than mine. People who were cancer survivors would approach me and speak to me when they saw me wearing my "cancer scarf." There was an immediate kind of bond there that I can't even describe. Often people who haven't had cancer try to minimize the cancer. They often assume because you're living your life, walking around, that you must have stage 1; that they caught the cancer very early. Alot of people don't even realize what you've been thru--removal of organs, etc. Like a laser zapped the tumors, no surgery or nothing. Maybe chemo. Everyone has heard about chemo. And then you not only have to stay strong for yourself but stay strong for others. They all want you to stay positive and strong. So, not to let them down, you force yourself to be "fine." Don't mention the nagging fear that it may come back--that's what you have to deal with everyday by yourself. Why burden others with that? It gets to the point where you end up keeping most of your feelings inside. So that is one of the things I like about this website. People can express their feelings, their fears. Plus we encourage and sympathize with one another.

    Dreamdove
    Dreamdove that was a great letter so I don't need to add to it. Helping others is what its all about and unless you have went through cancer its pretty hard to understand all the emotional issues involved. Last Sunday when I was sleeping I held my jaw too tight. That set off 4 days of pain that my 10 prescriptions would not touch. My damaged facial nerve went into full revolt and it felt like I needed 6 root canals. So I spent 4 days with ice in my mouth trying to get the swelling under control. I can't expect others to understand all the side effects I deal with or how much pain they cause. So we just deal with it and move on. I sure hope this week is better than the last one. Some people could read these pages and think there are a bunch of complainers here. But I doubt we hear 10% of the pain people are going through daily because of the side effects of treatment or the damage from cancer. This is a pretty elite group of good people with big hearts that try to help others despite their own pain. Ya gotta love that. Slickwilly
  • PMP Deb
    PMP Deb Member Posts: 1
    #52
    Dreamdove said:

    Feeling alone except on here
    Before I had cancer (ovarian) I didn't understand how those with cancer felt, even my own mother. I could only imagine. Now, of course, I can relate, even to those who have different types of cancer than mine. People who were cancer survivors would approach me and speak to me when they saw me wearing my "cancer scarf." There was an immediate kind of bond there that I can't even describe. Often people who haven't had cancer try to minimize the cancer. They often assume because you're living your life, walking around, that you must have stage 1; that they caught the cancer very early. Alot of people don't even realize what you've been thru--removal of organs, etc. Like a laser zapped the tumors, no surgery or nothing. Maybe chemo. Everyone has heard about chemo. And then you not only have to stay strong for yourself but stay strong for others. They all want you to stay positive and strong. So, not to let them down, you force yourself to be "fine." Don't mention the nagging fear that it may come back--that's what you have to deal with everyday by yourself. Why burden others with that? It gets to the point where you end up keeping most of your feelings inside. So that is one of the things I like about this website. People can express their feelings, their fears. Plus we encourage and sympathize with one another.

    Me Too
    I feel alone a lot too. I hate having to explain that I don't fear getting cancer again, but the thought of getting it again is with me all the time. I'm being tested again by my gynecologist, a not regular test. Every time I get tested I am hit with a depression. I'ts not because I'm worried, but because I have to deal with it again and think about it. My husband just doesn't understand. He criticizes my feelings and only wants me to be positive. Sometimes I just burst into tears. I don't always know just why. It's so frustrating.
  • hollyberry
    hollyberry Member Posts: 173
    #53
    PMP Deb said:

    Me Too
    I feel alone a lot too. I hate having to explain that I don't fear getting cancer again, but the thought of getting it again is with me all the time. I'm being tested again by my gynecologist, a not regular test. Every time I get tested I am hit with a depression. I'ts not because I'm worried, but because I have to deal with it again and think about it. My husband just doesn't understand. He criticizes my feelings and only wants me to be positive. Sometimes I just burst into tears. I don't always know just why. It's so frustrating.

    You're never alone
    As long as I'm still breathing, you will not be alone. When you go to your appointment, I will be there with you in spirit, holding your hand and giving you a big cyber-hug! We all have people in our lives that cannot understand or are to afraid to face losing us but, that does not mean that you have to face this all by yourself; all of us care and are here to help. You are in my thoughts and prayers and I hope that helps just a little bit. My husband was in denial of my dire situation (mucosal melanoma with multiple metastases) for at least 6 months before he finally could face it, but he did and is now so very supportive and kind. I hope yours will also come to terms with your situation and validate your feelings, so you don't feel so alone. If you need to cry, by all means,cry! It helps, but, when you dry your tears, smile!! You have more friends than you know! We're here to help. Much love, Hollyberry
  • hollyberry
    hollyberry Member Posts: 173
    #54
    blueroses said:

    to Larry59
    What choo talkin bout? lol. You have a great way with words, and besides, we survivors have our own way of saying things that only other survivors can truly understand. It doesn't take many words for us to be able to relate to each other, that's the beauty of it all on this site. Keep on keeping on Larry. Hugs, blueroses.

    A Very Good Day!!
    Dear blueroses and Larry59, I'm havin' a great day! Know why? You guys took the time to make me feel understood, and that is all it took! Thanks so much!! I've been fighting this monster for over a year and it has gotten me down so low at times, but, all I need is to read your posts and know that you care. That makes all the difference in the world to me; My family and friends have been supportive, but, you know all the things that others can't ( emotionally, physically, psychologically) and that comforts me in a way that I cannot even express in words. All I can say is, Thank you, for taking the time to respond, for being so kind and supportive and for making this a very good day!!Love, Hollyberry
  • blueroses
    blueroses Member Posts: 524
    #55
    hollyberry said:

    A Very Good Day!!
    Dear blueroses and Larry59, I'm havin' a great day! Know why? You guys took the time to make me feel understood, and that is all it took! Thanks so much!! I've been fighting this monster for over a year and it has gotten me down so low at times, but, all I need is to read your posts and know that you care. That makes all the difference in the world to me; My family and friends have been supportive, but, you know all the things that others can't ( emotionally, physically, psychologically) and that comforts me in a way that I cannot even express in words. All I can say is, Thank you, for taking the time to respond, for being so kind and supportive and for making this a very good day!!Love, Hollyberry

    Bottling " Validation"
    You know Holly, if we could bottle 'validation' it would put alot of drug companies out of business. It's so important and healthy to be understood, acknowledged and therein validated, so so important, not only in dealing with illness but in so many things in life as well. The great thing about validation too is not only does it heal ourselves but those who contribute to the process as well. You in turn have validated Larry and myself, and I am sure, all those who read your posts too. It goes around and around. All the best Holly, Blueroses
  • blueroses
    blueroses Member Posts: 524
    #56
    larry59 said:

    Hi cat and everyone
    I feel so lucky that today is a good day for me. Only one pain pill necessary. I truly wish that everyone here could have more good days.
    Shirley, please keep up with optimisim as much as possible. There's a positive side to everything but sometimes you have to search deep for it.
    And Cat, I know k stones are an extremely painful problem. Hope they fix yours quickly. Sometimes if you a very lucky they pass all by themselves, hope that's the case for you.
    Any everyone else, I really wish there was some way to physically give hugs, pats on the back, offer an encouraging or comforting word. Guess this site is as close to that as we can come.
    You folks are the best, hang in there, don't give up, and please let's stay in touch at least through this site. The chat room(s) are helpful too.

    From your keyboard to God's ears Larry, lol
    You know I think the K stone did pass on it's own with no problem or in fact I think they may well have dissolved cause it's going to be almost 4 weeks soon since the attack and nada has happened so I think you were right, they are gone. Whew. The ER doc said that for lymphonma patients, like me, k stones can be more common. Did I really need to know that? lol. Anywho I am holding a good thought that the little suckers are gone for good. Yowza they smart. lol. All the best Larry, Cat
  • blueroses
    blueroses Member Posts: 524
    #57
    slickwilly said:

    Dreamdove
    Dreamdove that was a great letter so I don't need to add to it. Helping others is what its all about and unless you have went through cancer its pretty hard to understand all the emotional issues involved. Last Sunday when I was sleeping I held my jaw too tight. That set off 4 days of pain that my 10 prescriptions would not touch. My damaged facial nerve went into full revolt and it felt like I needed 6 root canals. So I spent 4 days with ice in my mouth trying to get the swelling under control. I can't expect others to understand all the side effects I deal with or how much pain they cause. So we just deal with it and move on. I sure hope this week is better than the last one. Some people could read these pages and think there are a bunch of complainers here. But I doubt we hear 10% of the pain people are going through daily because of the side effects of treatment or the damage from cancer. This is a pretty elite group of good people with big hearts that try to help others despite their own pain. Ya gotta love that. Slickwilly

    You're oh so right, Slick
    I totally agree with you when you say that we only hear from about 10% of people with major side effects of treatment or damage from cancer. I think there are a couple of reasons for that, one being that they are guilted into thinking that they should be grateful that they are in fact alive from the treatment and think they are whining if they talk about side effects that are keeping them down. Of course we are grateful but the fact remains that the price we pay sometimes for our lives can be great indeed. This has a huge impact on us, trying to get back to 'normal', as you well know Slick. I also believe that those with side effects from treatment simply don't realize that their health issues are from the treatment/cancer itself. The medical problems are often blamed on getting old (like chemo brain) muscle and nerve neuropathies etc. If they knew why they were having the difficulties they could in fact reach out to others like us who experience these things and could so benefit from the feelings of validation they would get in return. I wish this site was more widely known amongst cancer survivors, I believe it would truly help them as it has helped us.
  • blueroses
    blueroses Member Posts: 524
    #58
    hollyberry said:

    You're never alone
    As long as I'm still breathing, you will not be alone. When you go to your appointment, I will be there with you in spirit, holding your hand and giving you a big cyber-hug! We all have people in our lives that cannot understand or are to afraid to face losing us but, that does not mean that you have to face this all by yourself; all of us care and are here to help. You are in my thoughts and prayers and I hope that helps just a little bit. My husband was in denial of my dire situation (mucosal melanoma with multiple metastases) for at least 6 months before he finally could face it, but he did and is now so very supportive and kind. I hope yours will also come to terms with your situation and validate your feelings, so you don't feel so alone. If you need to cry, by all means,cry! It helps, but, when you dry your tears, smile!! You have more friends than you know! We're here to help. Much love, Hollyberry

    Holly, so true
    When I was reading your post here about never being alone in appts because of all those on this site who validate us all, each and every day, I realized that since I came to this site I am a different kind of patient when I visit a doctor's office. Because of the validation of people on this site I can clearly state my issues, usually side effects of treatments and the cancer, and back it up with comments to the docs that let him/her know that there are many others like me reporting these kinds of things. That is powerful ammunition. I remember that a few months back I was visiting my family doctor for my regular monthly appt. and she said to me 'you know I am seeing alot of these same side effects in my patients who have gone through the same kind of cancer treatment that you have.' She said it with such astonishment it was nuts, I said ' You think?' and just gave her a half arsed smile. She got the point. We have been telling them for so long but finally, now that the numbers are adding up - so many reporting the symptoms, we are now being validated - still too slowly for me but at least it has begun. I think that those who were diagnosed and treated as children, those survivors who are adults today, really paved the way for the medical field to realize how great the side effects can truly be. Many procedures have been modified over the years because of them and now that there are so many successful treatments for cancer and we who were diagnosed and treated as adults are living longer and longer the medical profession is now recognizing the issues of side effects and longevity. Ha ha fooled you, we are still here, now what are you going to do with us? lol
  • hollyberry
    hollyberry Member Posts: 173
    #59
    blueroses said:

    Holly, so true
    When I was reading your post here about never being alone in appts because of all those on this site who validate us all, each and every day, I realized that since I came to this site I am a different kind of patient when I visit a doctor's office. Because of the validation of people on this site I can clearly state my issues, usually side effects of treatments and the cancer, and back it up with comments to the docs that let him/her know that there are many others like me reporting these kinds of things. That is powerful ammunition. I remember that a few months back I was visiting my family doctor for my regular monthly appt. and she said to me 'you know I am seeing alot of these same side effects in my patients who have gone through the same kind of cancer treatment that you have.' She said it with such astonishment it was nuts, I said ' You think?' and just gave her a half arsed smile. She got the point. We have been telling them for so long but finally, now that the numbers are adding up - so many reporting the symptoms, we are now being validated - still too slowly for me but at least it has begun. I think that those who were diagnosed and treated as children, those survivors who are adults today, really paved the way for the medical field to realize how great the side effects can truly be. Many procedures have been modified over the years because of them and now that there are so many successful treatments for cancer and we who were diagnosed and treated as adults are living longer and longer the medical profession is now recognizing the issues of side effects and longevity. Ha ha fooled you, we are still here, now what are you going to do with us? lol

    Knowledge is power
    Blue, you really made a great point. Sometimes our docs don't understand how debilitating neuropathy or joint pain or nausea can affect your quality of life so dramatically. I'm glad you spoke up to your doc and explained your situation so succinctly; I did that last week with my onco and he almost fell off the chair when I told him we need to get some of these side-effects under control. He was just looking at the CT results and was very pleased with my progress. When I told him the neuropathy, bone and joint pain were really getting me down, he brushed my concerns aside and said I should take warm baths and wear 2 pairs of socks! Wow- that's a treatment plan! I told him to help me, so that we could get through this clinical trial and really find a cure! His reply? "O.K., let's do that".I really hope that all of us ,together, can bring some first-hand knowledge and wisdom to all of the medical community and make treatment easier for the next guy. Wouldn't that be awesome!?! I would love for them to see us getting that 100th Birthday card from the White House, wouldn't you? Talk about validation!And thanks for the chuckles, I love your style, Hol
  • blueroses
    blueroses Member Posts: 524
    #60
    hollyberry said:

    Knowledge is power
    Blue, you really made a great point. Sometimes our docs don't understand how debilitating neuropathy or joint pain or nausea can affect your quality of life so dramatically. I'm glad you spoke up to your doc and explained your situation so succinctly; I did that last week with my onco and he almost fell off the chair when I told him we need to get some of these side-effects under control. He was just looking at the CT results and was very pleased with my progress. When I told him the neuropathy, bone and joint pain were really getting me down, he brushed my concerns aside and said I should take warm baths and wear 2 pairs of socks! Wow- that's a treatment plan! I told him to help me, so that we could get through this clinical trial and really find a cure! His reply? "O.K., let's do that".I really hope that all of us ,together, can bring some first-hand knowledge and wisdom to all of the medical community and make treatment easier for the next guy. Wouldn't that be awesome!?! I would love for them to see us getting that 100th Birthday card from the White House, wouldn't you? Talk about validation!And thanks for the chuckles, I love your style, Hol

    A gift basket for your oncologist, Holly
    You might think about telling your oncologist that next times he has a migraine or some other debillitating owie, forget the medications or treatments and just use this gift basket. In it should contain 2 pairs of socks, bath salts and try to find a copy of that book that was written a few years back about a doctor who treated patients poorly but then developed cancer himself and how his ideas changed about patients and their treatment and invalidation - in a hurry. Dang can't remember the name of that book. Anyone out there remember that book? It was written in the mid to late 80ties I think, possibly early 90ties.
  • Dreamdove
    Dreamdove Member Posts: 175 Member
    #61
    blueroses said:

    A gift basket for your oncologist, Holly
    You might think about telling your oncologist that next times he has a migraine or some other debillitating owie, forget the medications or treatments and just use this gift basket. In it should contain 2 pairs of socks, bath salts and try to find a copy of that book that was written a few years back about a doctor who treated patients poorly but then developed cancer himself and how his ideas changed about patients and their treatment and invalidation - in a hurry. Dang can't remember the name of that book. Anyone out there remember that book? It was written in the mid to late 80ties I think, possibly early 90ties.

    I know the book but don't remember title
    I read that book, too, but cannot remember the name or the author, sorry. Nothing against oncologists (I have a wonderful one) but they want to succeed at their jobs. It's also a numbers thing. The more patients they have in remission, the better. It looks better for them to have a high success rate. So they don't particularly want to hear the negative stuff. They feel we should be grateful they have us still alive.

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