Hmmmm

herdizziness
herdizziness Member Posts: 3,624 Member
edited March 2014 in Colorectal Cancer #1
Well, after this last refusal from stanford, just let me say, I'm tired of the upbeat crap we feed each other. I'm going to die, because I'm stage IV, and by golly we don't look at less then stage III, doesn't matter how well I did with chemo, doesn't matter about my CEA count, what matters is my stage, and gee, sorry we gave you a bit of hope, let us take that away. Kind of like the poor woman who's husband has pancreatic cancer, how many of us have given her some kind of hope? There isn't any, once in gets in the pancreatic area, pray for a peaceful death, it's soooo sad but true, why do we deny the truth? When I saw the post from her, all I wanted to say was I'm so sorry you're about to lose your husband, it's the truth, but somehow taboo to say!!! We must live on, eah, for each other, no matter the truth?

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    herdizz ln sorry for the news
    from Stanford . But l think there are many s lV survivors here who aré NED in this moment and others who have cronified their cancers and keeping a reasonable quality of life,
    please dont loose hope search for an other hospital ,surgeon or onc. As Per the pics l have
    seen you got a wonderful reason!
    Hope tomorrow will be a better day !
    Big hug!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Winter Marie
    I am sorry you have had this setback. There are other places who may consider surgery for you and if not you are responding well to treatment + that is a good thing whether surgery follows or not. We all will die, whether we are stage1 or stage4 or if we don't have cancer at all. Phil has a saying, something like birth has a prognosis of death (Phil can you please put in the right wording?). You still have hope; just because one place won't operate at this time doesn't mean it will never happen. There are people on this forum who were told they were inoperable + have been operated on at a later date.
  • Kerry S
    Kerry S Member Posts: 606 Member
    I know somewhat how you feel
    I know somewhat how you feel. They told me after they opened me up almost 2 years back to slice and dice my liver that there was just too damn much of it. They could not cut it out. Hell I even called Hospice. Then another doc came up with the liver chemo embolization idea.

    This last week my colon doc held my liver in his own hands and said it looks like new. I am glad you got your feelings out. Now just relax and find a new plan of action.

    We need you
    Kerry
  • John23
    John23 Member Posts: 2,122 Member
    Winter Marie -

    WOW.

    On the up-side, you're really cute when you're pissed!

    (there's somethin' really hot about a broad with one foot in the grave!!)




    (loveya', babe!)

    John
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Hi HD
    I think we really all try and just support each other and try not to hurt each others' feelings...sometimes, we may believe or see the truth...the person writing may know it too, but it's good to get encouragement still, so we can keep going.

    I'd hate for someone to tell me, "You're dead Craig, now hurry up and get on with it." LOL:)

    I've been "dead" twice now and over six years later, I'm still hooking 'em horns.

    Only this last recurrence, have I thought I might not really make it now, like I thought I would...seems this will be my patter till I go....Recurrence, Surgery, Treatment, Watch and Wait.

    Pancreatic cancer only has a 1 in 100 chance of survival, true. It's a scary cancer. They thought originally that was what I had, but it was liver. I was planning my funeral.

    I'm sorry for the setback. The key to today's cancers may not be "curable" for the majority of us, but rather it's now becoming "EXTENSIONS OF LIFE" that we win with treatments and surgeries.

    Don't give up hope...my cancer center here at UTSW just became approved and is now an NCI cancer institute - just like MD Anderson, so coming South could become an option for you.

    And we're "upbeat" because we care about each other and don't want to hurt each other's feelings. Sometimes, it seems fakish, but when we wipe out HOPE, we lose.

    Love ya'
    Craig
  • geotina
    geotina Member Posts: 2,111 Member
    HD:
    Not sure how to respond, yep all of us will die someday, that is a fact, and we all hope for a peaceful, pain free death or death like my mom experienced, hit the floor was gone within 5 seconds, no pain, no scream, just gone.

    George is a Stage IV, and, as it stands will never have any type of surgery. Do I still have hope, you bet I do. He was diagnosed 18 months ago and we just came back from a 5 day trip to Vegas on Thursday evening and Friday morning left for a 3 day weekend in mid-Michigan. Will the other shoe drop for him, most likely, but we are not sitting and waiting for that to happen and neither should you.

    If you are unhappy with Stanford is there a chance you can travel to another center and see what they see?

    Lots of people have surgery and then they go downhill, just never recover well, and their cancer goes crazy. Some have surgery and do fantastic. You can have an excellent quality of life without surgery, lots of people on the board do.

    Just giving up, well in my and George's vocabulary that is not gonna happen, at least not yet.


    Take care - Tina
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    So sorry
    I understand how you have gotten to this point of despair and anger, but I hope you can find the up side again. Yes, it's true you may very well die from this cancer, but it's also true that you may get rid of it, or at least keep it at bay well enough to enjoy lots more of life.

    I do hope and pray you will find another place for treatment, and that they will have something wonderful to offer you.

    *hugs*
    Gail
  • PGLGreg
    PGLGreg Member Posts: 731
    I have some very limited
    I have some very limited understanding of your situation, since my father was evaluated at the Cleveland Clinic for a heart transplant. Their prognosis? Terminal without a transplant. Would they give him a transplant? No. Why? They wouldn't say. And so, within a year, he died, just as they predicted. I'm still bitter about that.

    My best idea for you, rather feeble I know, is to first make sure of what Stanford is saying. Try to make them be explicit. Then, if they are indeed refusing treatment, ask them for referrals. If they won't treat you, surely they can at least survey their contacts and forward your records to other facilities in the area which may have more resources or better policies to help you out.

    --Greg
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry
    So sorry that you didn't get the results from Stanford that you wanted but please don't give up. Not sure what happened at Stanford that would give you that opinion that you being stage IV is a reason to give up. It sounded like you were doing so well on chemo and things were progressing in the right direction. Please don't give up. You are in my thoughts always.

    Kim
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Fine.......then lets just all give up...
    Sure, never mind the ones that aren't as upbeat and want to end their life because they can't hang in there or don't think they have a snowballs chance in hell of surviving. Well young lady, we all have a great chance of surviving, you know why ? because, we will not give up. The "poor" woman you speak of relies on hope , be it true or false, its still hope, and her want for her husband is just as large a want as yours is to be really really frustrated with everyone, especially Stanford, but that woman comes in here for hope and shes getting it, or at least some solace as to how to cope with the prospect of having to deal with end of life issues. Hell no, I know Im not gonna hear good news when I go to surgery, I can almost betcha that I will jump to stage 4 after being NED for 2 years and now a tumor in my lungs, and 4 kids ages 5,8,16 and 25 and a wife that just turned 37 and will be responsible for all of their future. You know who I blame it on, nothing, or nobody, its simply life at its finest, and we either deal with it or we don't. I am here to give advice as to make the journey for anyone with this disease or a caregiver dealing with the disease as painless and worry free as possible. We never tell them they will live or die, only one knows that, buts thats another story again, we only offer up hope and humor and laughter and the ability for someone to vent because we do know why they vent in here. It is because we don't simply blow it off as well hell, life sucks, cause it don't. I got to spend 5 years with my daughter and 8 years with my son and 16 years with my other son and 25 years with my other daughter and 14 years with my wife, and I will be damned if I will go peacefully, my 25 year old daughter called me a "Tough Old Basterd"...To me thats a compliment, because it tells me that I mean something to my kids, shows and teaches them not to give up ever, and hopefully they will be ok in life, and venting is fine, vent all you want, but have mercy on ones you do not know, to tell them there is no hope, look how you felt when Stanford said that to you. I love everyone on here including you Marie and sometimes it is a lot easier to say Im sorry I know how you feel, but I tell it like it is, good or bad. If you tire of the upbeat crap we feed each other in here then simply lurk, or don't post. We certainly want you in here, or I will speak only for myself, I want you here, because I love anyone that loves life, and will try and protect all from hurt and try and at least give them some hope even if for another day. But, if you give up on yourself, then I will still love you always, but there are others in here that do take solace in here when its given, and if you don't want that then simply tell me and it will stop from me.
    Marie, This is a post to you to let you know that if I didn't care I wouldn't even bother, but I know that you care about living as I do. We can't do it negatively. I will not go down without a fight, I don't give a damn what it is. I don't suspect you will either. So gripe, ****, scream, yell, cuss, whatever it is that gets you through, but get through it and move ahead, show Stanford that there are more options out there than just them, or simply sit on the beach and beach......
    Love to you , Clift
  • madiarsg
    madiarsg Member Posts: 17
    It's hard
    It's hard, once you have your hopes tied to something, to have that tie cut. Yes, we know the reality is that many cancers and stages can be death sentences. We all know that, and yet we look for the miracle stories of someone beating the odds. I do it myself regularly, especially as of late. You will find the strength to go back on the hunt for a surgeon to do this primary surgery, but until then don't force yourself to do so. Take the time, recover from this hurt, and gather your energy. We know the truth, but sometimes, we want to hear a little white lie to make it through the day.
  • Nana b
    Nana b Member Posts: 3,030 Member
    madiarsg said:

    It's hard
    It's hard, once you have your hopes tied to something, to have that tie cut. Yes, we know the reality is that many cancers and stages can be death sentences. We all know that, and yet we look for the miracle stories of someone beating the odds. I do it myself regularly, especially as of late. You will find the strength to go back on the hunt for a surgeon to do this primary surgery, but until then don't force yourself to do so. Take the time, recover from this hurt, and gather your energy. We know the truth, but sometimes, we want to hear a little white lie to make it through the day.

    Keep fighting, and please don't blow up someone's else's bubble!
    Marie, you don't have to give up on life until you have to.....I am also Stage !V, and the chemo shrunk my tumor so small that the liver surgeon said, "I will NOT do surgery on what I can't see, if the chemo has shrunk the tumor then there is no reason to go in." I am a surgeon and I go after what I can see. My heart just sank, so I called my ONC, right then and there. He talked to my surgeon and told him, "you know where the tumors were, go with that and do the surgery. We will not take no for an answer." I was so scared that the surgeon was giving up. The surgeon sent me over for some ultrasounds, and they were closing up, but the tech decided to stay open for me. ....Luckily, the ultrasound picked up an area where he could still see one of the tumors and he found another that my scan did not pick up, so I was scheduled for the surgery. He could not see one of the first two tumors, so he cut where he thought it was... 50% of my liver was gone, and he did not see anything, so he went in for 10% more. He cut that section up and there it was, he could only hope for a clean margin. Here I am a year later and in remission. KEEP fighting Marie. Thought I would share this poem.

    This poem is not for a cancer patient but the meaning it powerful........Don't quit!

    When things go wrong, as they sometimes will,
    When the road you're trudging seems all uphill,
    When the funds are low and the debts are high,
    And you want to smile, but you have to sigh,
    When care is pressing you down a bit-
    Rest if you must, but don't you quit.

    Life is queer with its twists and turns,
    As every one of us sometimes learns,
    And many a fellow turns about
    When he might have won had he stuck it out.
    Don't give up though the pace seems slow -
    You may succeed with another blow.

    Often the goal is nearer than
    It seems to a faint and faltering man;
    Often the struggler has given up
    Whe he might have captured the victor's cup;
    And he learned too late when the night came down,
    How close he was to the golden crown.

    Success is failure turned inside out -
    The silver tint in the clouds of doubt,
    And you never can tell how close you are,
    It might be near when it seems afar;
    So stick to the fight when you're hardest hit -
    It's when things seem worst that you must not quit.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Confused
    Was the fact that Stanford would not take Stage IV patients a secret? Or did your doc just not do his homework? Or was there another reason that Stanford would not take you?

    Here you are with tumors too small to be seen on a scan and a CEA in single digits instead of thousands and you feel cheated? Sounds to me you are mad at the wrong folks here. Get mad about your docs and find someone who whats to help you continue to fight.

    The truth is yes we will all die and some will die from cancer, and some will die in spite of all their treatment efforts. BUT, most folks here plan on LIVING until that day comes. So what if the number of days left is not the kazillion we all figured we were owed. Having and giving HOPE that there is always one more day for each of us and that perhaps that cure will be there on that day is OK for me.

    I pay my doctor to give me the cold hard truth about this disease. I come here to be with friends who are in this fight with me, who will lift me up when it seems I can't go another day, who will share everything and anything with me about who things work.

    As for the lady whose husband has pancreatic mets, it is not for you to say that he will be dying any time soon. Patrick Swayze lived with full blown pancreatic cancer for 21 months after diagnosis and I mean he LIVED. It is not up to any of us to 'take away' the possibility of lots of good days from anyone.

    We each have to choose how we live the rest of our days. We who have had a cancer diagnosis have just had a reminder that no one lives forever.

    The TRUTH is that I want the upbeat energy which come from most members of this board. There are too many other places where the other truths are given to me.

    I hope that you find that you can again hope, because live isn't much in any catagory without it.

    May you find a new doc or at least peace of heart and mind.

    Marie who loves kitties
  • ktlcs
    ktlcs Member Posts: 358

    Confused
    Was the fact that Stanford would not take Stage IV patients a secret? Or did your doc just not do his homework? Or was there another reason that Stanford would not take you?

    Here you are with tumors too small to be seen on a scan and a CEA in single digits instead of thousands and you feel cheated? Sounds to me you are mad at the wrong folks here. Get mad about your docs and find someone who whats to help you continue to fight.

    The truth is yes we will all die and some will die from cancer, and some will die in spite of all their treatment efforts. BUT, most folks here plan on LIVING until that day comes. So what if the number of days left is not the kazillion we all figured we were owed. Having and giving HOPE that there is always one more day for each of us and that perhaps that cure will be there on that day is OK for me.

    I pay my doctor to give me the cold hard truth about this disease. I come here to be with friends who are in this fight with me, who will lift me up when it seems I can't go another day, who will share everything and anything with me about who things work.

    As for the lady whose husband has pancreatic mets, it is not for you to say that he will be dying any time soon. Patrick Swayze lived with full blown pancreatic cancer for 21 months after diagnosis and I mean he LIVED. It is not up to any of us to 'take away' the possibility of lots of good days from anyone.

    We each have to choose how we live the rest of our days. We who have had a cancer diagnosis have just had a reminder that no one lives forever.

    The TRUTH is that I want the upbeat energy which come from most members of this board. There are too many other places where the other truths are given to me.

    I hope that you find that you can again hope, because live isn't much in any catagory without it.

    May you find a new doc or at least peace of heart and mind.

    Marie who loves kitties

    Vent
    It seems to me like you just need to vent a little and I don't blame you. You are angry and you have a right to be, with one hand they gave you hope, and with the other, took it away. I too am angry, angry at the cancer that took my husband, angry at the Drs that couldn't help him, angry that I am here alone, reminded every day of what I lost. Despite the anger, I don't want to take away hope from anyone else. Sometimes I read a post and my first reaction is to think that the person is fooling themself, and then I realize who am I to say? Miracles happen every day, Dr's are wrong all the time, and even if someone is fooling themself so what, we do whatever it takes to get ourselves through the day.

    From reading your story these past several months it seems that you have done better than anyone expected. So why think that will not continue? For now, vent if you need to, scream, cry, curse, whatever helps, but please don't take your frustrations our on those fighting the same battle as you. Concentrate those energies into your recovery!

    Kathy
  • John23
    John23 Member Posts: 2,122 Member
    Winter Marie -


    From your recently updated profile:

    "What have you learned from your experiences that you would like to share?"

    "That we all spend too much time being scared and worried. I keep
    trying to stop being afraid, after all we have looked death in
    the face and are still here. I'm still scared, but trying to
    overcome those fears. Every day is another day that the sunshine
    of a new morning has kissed my face, and for that I am grateful.

    I hope that someday, more then now will survive, that those left
    behind don't suffer the loss too much, that they can deal with it
    well. Sadness prevails in my heart at the moment, I'm sure I'll
    get over it. Right now, time for my weeping and sobbing, I'm
    getting to good at it. LOL Damn it, why do I have to love life so
    much? It's so hard to give it up!!!"


    I always wonder why.... why.... when there's something like TCM
    sitting out there and western medicine's reached as far as it could......
    .....that TCM continues to go ignored.

    Even the use of TCM -along with- conventional western medicine
    continues to be refused or considered. Why? It's used in that manner
    in many other countries! Have we become so brain-washed that
    any other remedy is a waste of time?

    Why the hell are all other alternatives being cast aside for blind
    faith in things that are being pushed by the cancer industry?

    I'm getting hoarse from screaming to people that don't care to listen.

    False hope can lead you too far down the road, where the road
    takes nasty turns, and leads to no-where.

    If you find what you're doing isn't good enough, don't be afraid
    to change directions; Don't be afraid to try something else.

    Even if it's -along with- your "ideal choice".

    I watch one person after another, getting worse instead of better,
    until they are so weak from failed treatments that nothing will
    bring them back. I have to ask myself..... why did they refuse to
    try something else when they had a chance?

    Why?

    Marie...... You'll do fine. That clinic isn't the only one around,
    and they aren't offering anything that another can't do better.

    And...... There -ARE- other options as well.

    Be well.


    John
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    Contact Univ Calif San
    Contact Univ Calif San Francisco which an hour from you. They take medicaid and are in top 10 for cancer treatment centers. Ill provide you with a few medical oncologists at UCSF. Sounds like Stanford med center would rather discount stage 4 colon patients then attempt to make a difference in extending a persons life, perhaps in years, and providing hope.

    Imagine if all centers and Doctors had the same approach and refused stage 4 colon patients. The survivors who are alive today, some for years, would never had the chance to be here today
  • Nana b
    Nana b Member Posts: 3,030 Member

    Contact Univ Calif San
    Contact Univ Calif San Francisco which an hour from you. They take medicaid and are in top 10 for cancer treatment centers. Ill provide you with a few medical oncologists at UCSF. Sounds like Stanford med center would rather discount stage 4 colon patients then attempt to make a difference in extending a persons life, perhaps in years, and providing hope.

    Imagine if all centers and Doctors had the same approach and refused stage 4 colon patients. The survivors who are alive today, some for years, would never had the chance to be here today

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