Do you really think it can be beat?

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Comments

  • tesslee
    tesslee Member Posts: 97
    #62
    John23 said:

    Home care?


    Re:
    "i spent the last three weeks in bed mostly. the home care nurses
    made a mistake with the 5fu dosing. instead of three days (46
    hrs) i ended having the pump on five days. it really did a number
    on my energy. it's amazing how my attitude is directly related to
    how i am feeling, hmmm, don't think that's anything new. but
    another chemo round today and if they (home health care) got it
    wrong this time, i'm going for blood. "

    My mind is going 90 mph, but I'm speechless.

    I trust you notified your oncologist? If not, do so. And notify
    the management of that home care provider. If you don't have
    an attorney, you might want to consider talking to one, and
    providing data if and when the time comes that you may desire
    to have an attorney on your side.

    Chemotherapy isn't something to fool with.


    Take care.


    John

    John, thank you
    my nurse immediately called my oncologist office and told them what happened. the trainee nurse took care of hooking me back up.

    when i saw my oncologist for my chemo the next monday (which i did not do because i was not recovered) he got upset and wanted another home health care co. i am the one who said no, i like my nurses, they made a mistake. well maybe that was a mistake, but if they just sent the same three or four nurses things would be okay. my nurse yesterday is a trusted one for me and i told her what my doctor had said. so i am sure it will get passed on between the nurses and i will either be the hard one to deal with or the one to be careful with, i don't care. just treat me with respect and do your job right. for now that's where i think it will rest. i have a hard time with new people coming into my reno house. it should be documented (i will find that out) in my file, if needed in the future. but to be honest it scares me why it might be needed.
  • tesslee
    tesslee Member Posts: 97
    #63
    coloCan said:

    In a sense, you're beating it every second you're still alive--
    with the caveat that the positives in your life exceed the negatives.....steve

    oh Steve, i do appreciate what you are saying
    and i hear it over and over here and elsewhere. attitude is everything, look at the positives. well i know i'm not the only one, but many people have had a hard life and i am one, many people have no family, and tho i have a huge family, i may as well have none, as i choose not to have those pains in my stoma in my life, got that from you John. i am widowed, live alone, no children. not many friends, you get the picture. am i still a good person, YES i am, even tho i am a big believer in karma, and i struggle with whether getting cancer is bad karma.

    my message is that there are many people like me who have had bad times and find it hard to find the positives some time, they deserve to beat it also. it doesn't mean giving up, it just means i have to fight harder, find the small things that matter, and if i can't that day, i will tomorrow. eh, i hope that made some sense.
  • SueRelays
    SueRelays Member Posts: 485
    #64
    tesslee said:

    John, thank you
    my nurse immediately called my oncologist office and told them what happened. the trainee nurse took care of hooking me back up.

    when i saw my oncologist for my chemo the next monday (which i did not do because i was not recovered) he got upset and wanted another home health care co. i am the one who said no, i like my nurses, they made a mistake. well maybe that was a mistake, but if they just sent the same three or four nurses things would be okay. my nurse yesterday is a trusted one for me and i told her what my doctor had said. so i am sure it will get passed on between the nurses and i will either be the hard one to deal with or the one to be careful with, i don't care. just treat me with respect and do your job right. for now that's where i think it will rest. i have a hard time with new people coming into my reno house. it should be documented (i will find that out) in my file, if needed in the future. but to be honest it scares me why it might be needed.

    Live life like it is short,
    Live life like it is short, and hope to God it's long!
    Being dx'd with stage IV means this crap is probably going to kill me one day. Sometimes to know and think about how you're going to die, is just too much for me. HATE when those thoughts creap in to my brain......but then like I told Kathy "Do I really know how I'm going to die....Hell no. I could get hit by a car tomorrow.....or there is that whole 2012 theory hahaha". SOOO many things to worry about!!!
  • Unknown
    Unknown
    #65
    SueRelays said:

    Live life like it is short,
    Live life like it is short, and hope to God it's long!
    Being dx'd with stage IV means this crap is probably going to kill me one day. Sometimes to know and think about how you're going to die, is just too much for me. HATE when those thoughts creap in to my brain......but then like I told Kathy "Do I really know how I'm going to die....Hell no. I could get hit by a car tomorrow.....or there is that whole 2012 theory hahaha". SOOO many things to worry about!!!

    This comment has been removed by the Moderator
  • Lotus
    Lotus Member Posts: 4
    #66
    What is NED? Yes, I think it
    What is NED? Yes, I think it can be beaten. I have a sister who is ten yrs after treatment now!
  • Unknown
    Unknown
    #67
    dorookie said:

    Chris, ME too
    I have struggled with this too, like where is the rebirth that is suppose to happen after something like this? Why is it others are having these life changing events and I am not? I couldnt and probably wont ever figure it out, I like you am just ordinary, I am a bit of a slave to my job, love my family so much, and I find peace and happiness in small things. Just a simple person, trying to live, love and laugh...


    Beth

    This comment has been removed by the Moderator
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #68
    Lotus said:

    What is NED? Yes, I think it
    What is NED? Yes, I think it can be beaten. I have a sister who is ten yrs after treatment now!

    NED
    Welcome, Lotus. NED = No Evidence of Disease
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #69
    YES!!!!!!!
    Yes I think it CAN be beat; we just don't individually know if we WILL beat it. We have to believe we will. One of the things that keeps me going is all the stories, here + ones that I know of personally where huge odds have been beaten. I do believe in positive thinking + one of the tools I use if I am feeliong down is to repeat in my head positive words I have heard as well as remind myself of the longer term survivors who inspire me every single day.
  • christinecarl
    christinecarl Member Posts: 543 Member
    #70
    AnneCan said:

    YES!!!!!!!
    Yes I think it CAN be beat; we just don't individually know if we WILL beat it. We have to believe we will. One of the things that keeps me going is all the stories, here + ones that I know of personally where huge odds have been beaten. I do believe in positive thinking + one of the tools I use if I am feeliong down is to repeat in my head positive words I have heard as well as remind myself of the longer term survivors who inspire me every single day.

    thanks for the replies
    I just wanted to thank everyone for their replies to my question. I love hearing about how everyone has dealt with their diagnosis. It has been very uplifting.

    Beth, I am not sure exactly how I feel about it still, I guess I am just a work in progress. But I want to be the old me again, I think I can get close to that, but not completely, knowing everything I know now. Brooks, I loved your story, I hope you get your 5 minutes and much more. And I love Eric's view of "the only way to truly heal is if you can get to a spiritual and mental state where you are not afraid to die." I hope we all achieve that, and I believe we can.

    I have never really liked the analogy about "You could get hit by a bus tomorrow" as a way to dismiss fears of death or shrug off things. We all know there is a big difference between knowing you could get hit by a bus tomorrow and having that bus flying towards you, huge difference.

    But again thanks everyone, there are many of you who responded, that I have not mentioned above, but enjoy reading your thoughts just as much. I want to take parts of what you all believe and carry it with me, you are all so amazing. :)
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #71
    christinecarl said:

    thanks for the replies
    I just wanted to thank everyone for their replies to my question. I love hearing about how everyone has dealt with their diagnosis. It has been very uplifting.

    Beth, I am not sure exactly how I feel about it still, I guess I am just a work in progress. But I want to be the old me again, I think I can get close to that, but not completely, knowing everything I know now. Brooks, I loved your story, I hope you get your 5 minutes and much more. And I love Eric's view of "the only way to truly heal is if you can get to a spiritual and mental state where you are not afraid to die." I hope we all achieve that, and I believe we can.

    I have never really liked the analogy about "You could get hit by a bus tomorrow" as a way to dismiss fears of death or shrug off things. We all know there is a big difference between knowing you could get hit by a bus tomorrow and having that bus flying towards you, huge difference.

    But again thanks everyone, there are many of you who responded, that I have not mentioned above, but enjoy reading your thoughts just as much. I want to take parts of what you all believe and carry it with me, you are all so amazing. :)

    and so are you................
    :)
  • tesslee
    tesslee Member Posts: 97
    #72
    unknown said:

    This comment has been removed by the Moderator

    OMG i didn't know that
    thank you Graci for that info. i googled it and found more articles on the subject. i didn't want to drag this huge post to the top again, but then again, maybe someone new like me will see it.

    i didn't get an overdoes, but if they had reset the infusion rate the opposite way, a faster drip instead of slower, i would be in trouble now. i really gave the nurse a thorough going over of what she had done this time and she was very cooperative and i was satisfied. one way for me to tell it's working right is it cycles every three minutes. but i will be a vigilante now, making sure no joking or talking is going on while being done. the nurse who unhooked me yesterday said that chemo drugs were always double checked by two people when she worked in the hospital.

    and yes i know what you mean about asking questions about your infusions. we have one nurse who is kinda defensive if you ask her anything. it's rather sad. they should enjoy sharing information to help you be more informed too. seems like it would make their jobs easier. but it's out bodies, and our lives, so be it if they don't like it. what comes to mind for me, is what my cancer therapist says. it's all about me now. take care of me and the rest can care for themselves.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #73
    christinecarl said:

    thanks for the replies
    I just wanted to thank everyone for their replies to my question. I love hearing about how everyone has dealt with their diagnosis. It has been very uplifting.

    Beth, I am not sure exactly how I feel about it still, I guess I am just a work in progress. But I want to be the old me again, I think I can get close to that, but not completely, knowing everything I know now. Brooks, I loved your story, I hope you get your 5 minutes and much more. And I love Eric's view of "the only way to truly heal is if you can get to a spiritual and mental state where you are not afraid to die." I hope we all achieve that, and I believe we can.

    I have never really liked the analogy about "You could get hit by a bus tomorrow" as a way to dismiss fears of death or shrug off things. We all know there is a big difference between knowing you could get hit by a bus tomorrow and having that bus flying towards you, huge difference.

    But again thanks everyone, there are many of you who responded, that I have not mentioned above, but enjoy reading your thoughts just as much. I want to take parts of what you all believe and carry it with me, you are all so amazing. :)

    The Old Me
    I'm not sure that can ever happen. Maybe it has to do with what stage one is at but I know that I will never be who I was pre-cancer. Physically or emotionally. Cancer, for me at least, was a big change from what was my normal. I have found that through the years cancer has given me a series of new normals which I can accept or deny. They are there for better or for worse.

    I do not find that the analogy of being hit by a bus tomorrow to be dismissive or shrugging death off at all. I find it to be very realistic. Maybe the saying is over-used (I think it started out as being hit by a streetcar but they are not around anymore) but what I have found out in the years I've had cancer and been a part of this board and other support groups is that very many people are convinced and/or obsessed with the notion that they can ONLY die from cancer. I do not understand how that can be helpful to anyone at all but apparently it is or else so many people would not do that. There is no one size fits all with how we successfully deal with (or do not deal with) cancer. It's all a matter of what works for you.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #74
    PhillieG said:

    The Old Me
    I'm not sure that can ever happen. Maybe it has to do with what stage one is at but I know that I will never be who I was pre-cancer. Physically or emotionally. Cancer, for me at least, was a big change from what was my normal. I have found that through the years cancer has given me a series of new normals which I can accept or deny. They are there for better or for worse.

    I do not find that the analogy of being hit by a bus tomorrow to be dismissive or shrugging death off at all. I find it to be very realistic. Maybe the saying is over-used (I think it started out as being hit by a streetcar but they are not around anymore) but what I have found out in the years I've had cancer and been a part of this board and other support groups is that very many people are convinced and/or obsessed with the notion that they can ONLY die from cancer. I do not understand how that can be helpful to anyone at all but apparently it is or else so many people would not do that. There is no one size fits all with how we successfully deal with (or do not deal with) cancer. It's all a matter of what works for you.

    But we like the Phill we got
    Never knew the "old Phill" but I sure do like the Phill we have now!!!


    Love ya
    Brooks
  • Sandi1
    Sandi1 Member Posts: 277
    #75
    my husband
    My husband is currently NED for the second time since he was diagnosed. After the second reoccurance we just try to live everyday like it was his last day, because tomorrow if cancer doesn't kill him, he could get hit by a car and die. He is an avid motorcyclist, and people say to him all the time, "Aren't you worried that you will get in an accident and get killed?" He says to them, if i don't die that way, cancer will kill me eventually, so i am going to do what i enjoy and live my life to the fullest. It has taken me 3 years to catch up with him and his thought process, but i realize now, if it makes him happy then i need to let him do it. I even started riding with him, i don't ride my own - i am happy being a passenger. So the point of this story is - live life to the fullest, don't worry about the what if's or the maybe's - just enjoy the day for what it is and worry about tomorrow, tomorrow.
    Sandi
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #76
    Sandi1 said:

    my husband
    My husband is currently NED for the second time since he was diagnosed. After the second reoccurance we just try to live everyday like it was his last day, because tomorrow if cancer doesn't kill him, he could get hit by a car and die. He is an avid motorcyclist, and people say to him all the time, "Aren't you worried that you will get in an accident and get killed?" He says to them, if i don't die that way, cancer will kill me eventually, so i am going to do what i enjoy and live my life to the fullest. It has taken me 3 years to catch up with him and his thought process, but i realize now, if it makes him happy then i need to let him do it. I even started riding with him, i don't ride my own - i am happy being a passenger. So the point of this story is - live life to the fullest, don't worry about the what if's or the maybe's - just enjoy the day for what it is and worry about tomorrow, tomorrow.
    Sandi

    Good Attitude Sandi
    I think many people live their lives in fear. That doesn't mean we all should be reckless but if your husband likes to ride motorcycles, then go for it. I'm glad you are going along too.

    Brooks, thanks for your comment.
    Love ya too Bud!
    -p

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