tests on Monday

LOUSWIFT
LOUSWIFT Member Posts: 371 Member
in Colorectal Cancer #1
Well I have a colonscopy and at the same time they are going to put a camera down my throat to see if I have developed any weak veins from my chirrosis. The doctors are pretty sure that the 12 treatments of Folfox damaged my liver since they eliminated all other causes of chirrosis( I don't drink and the most common cause is fatty liver diease which I don't have) I developed chirrosis in the liver it looks like after treatment #7 but my onc ignored the signs and assured me it was just the chemo and would go away. These weak veins apparently may develop when you get chirrosis and may rupture and you will bleed to death so if I have any of them they will "band" them so there is little chance of that. I guess it's better to die a piece at a time of chirrosis and/or cancer then to drown in your own blood. Anyway I shouldn't be worried about cancer showing up a 3rd time for now since I just completed Folfox four months ago and then spent a month in the hospital where they ran every test (Florida Docs thought I had liver cancer and not as it turned out chirrosis). I live in Michigan but was on vacation in Florida when I had to go to ER ended up in ICU for 5 days then 24 additiional days in the hospital. I weighed 218 went I went into the hospital now I weigh 153. I have a great deal of trouble eating anything; tired all the time;sometimes trouble breathing; can't sleep more than a couple of hours at a time-due to the 2 diuretics I now have to take; hands still painful from folfox; and I have physical therapy ( I lost almost all of my muscle body wide) and couldn't walk or even sit up without help. I still have a port in my chest which I want out but my ONC is avoiding me and other docs say he has to okay the port removal. Might as well take it out if cancer comes back I will never ever never due chemo again. My point is in this long drawn out story "don't trust doctors". I did everything they asked of me. I saw their mistakes and accepted their explainations. I slept on toilets during chemo and lived in pain and misery, but once you become a veteran of cancer and how the treatments may save your life you realize quality is more important than quantity. I'm told I have two years maybe 10 if I am very lucky before the chirrosis kills me but cancer usually returns in about two years so the race is on to see which gets me first. Cancer has the inside track because apparently chirrosis increases the chances of its return. I have become the one thing in life I never wanted to be and that is a burden to my wife and family. Still come Monday I sit here worrying about them finding cancer on Monday. I know it is unlikely but this is what cancer does...sometimes it lets you live a deminished life but it never lets you forget it. Well sorry about talking so long just had to do something to get through until Monday. Prays with you all hugs Lou

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #2
    Good luck Lou
    I am so sorry about the cirrhosis. I spent the last 10 minutes or so trying to find something on the web about FOLFOX, or any other Chemo, listing this as a side effect with no success, though I did find that the ascites should have been an early warning sign to your onc.

    The not so funny thing is that without treatment the cancer would likely have caused liver failure, and now, for you, this is what the treatment has done.

    One thing; how does this make you a burden? Your family loves you, and from what I have gathered from previous posts, will continue to.

    Like me, quality of life is as, or more, important as quantity is to you. Have you discussed working with a palliative care team with your doctors? This would be in conjunction with all the other treatments, and is not "giving up". From what I am reading, your symptoms can be manageable through diet and medication, and having a team that looks for the best quality of life mix in there can be a big help.

    Blake
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #3
    Sorry
    Sorry you are dealing with all of this. You tend to trust your doctors only because you aren't a doctor yourself and they are the ones that are supposed to be the experts. It's sad that your doctor didn't take the swelling of your stomach seriously enough. He probably thought the scan you had in March was the guide he was working on since you said it was normal. But with your stomach swelling so fast, you would have thought your doctor would have run more tests. Agree with Blake that you aren't a burden. Your family loves you and you didn't choose this path. I'm sure your scope will come back normal too. Hope that it goes well for you and keep us informed. You are always in my thoughts and prayers.

    Kim
  • ron50
    ron50 Member Posts: 1,723 Member
    #4
    G'day Lou
    I am so sorry that you are in this position mate. It reminds me of an old cartoon I once saw. Two scientists were watching a rat go thru a maze. At the exit of the maze was a rat trap. One of the scientists says to the other'Who said anything about being fair'. After the lenghth of time you were ca free I could hardly believe that it had come back and now this. It is about time something went your way. I hope you can beat the odds.The liver is a remarkable organ perhaps there may just be enough good liver left to get some regrowth. The medical profession has not done you many favours so far perhaps you should ignore their predictions this time and just live life as if you have a future. All the best mate I will keep you in my thoughts Ron.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    ron50 said:

    G'day Lou
    I am so sorry that you are in this position mate. It reminds me of an old cartoon I once saw. Two scientists were watching a rat go thru a maze. At the exit of the maze was a rat trap. One of the scientists says to the other'Who said anything about being fair'. After the lenghth of time you were ca free I could hardly believe that it had come back and now this. It is about time something went your way. I hope you can beat the odds.The liver is a remarkable organ perhaps there may just be enough good liver left to get some regrowth. The medical profession has not done you many favours so far perhaps you should ignore their predictions this time and just live life as if you have a future. All the best mate I will keep you in my thoughts Ron.

    You are in my prayers Lou!
    Feel so sorry for your troubles !, cheer up my friend!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #6
    don't trust doctors ?
    dear lou,

    but if we don't, who do we trust ? ourselves, god, this forum.

    we been on the same folfox express, i have annoyed my onc every fortnight with queries about alternative treatments from juicing, to tea, to supplements, to diet.

    everyones who been here long enough knows my story and yours. we are all so different,
    just too many maybe's.

    so just goodluck on monday. were you interested in reading the healthy liver and bowel book by sandra cabot.

    hugs,
    pete
  • John23
    John23 Member Posts: 2,122 Member
    #7
    Lou -

    Re:
    "I will never ever never due chemo again."

    There's always hope, and there's always TCM, and other "alternatives"
    that do your body no harm and leave no damage behind.

    Chemo, radiation and western medicine isn't the only route to take, Lou.

    Be well.

    John
  • dorookie
    dorookie Member Posts: 1,731 Member
    #8
    Sending Prayers
    Lou, I am so sorry to hear of this, how horrible and I am sure it makes you very angry, rightfully so in my opinion. But please dont think you are a burden to your family, I am sure they love you and want you with them, no matter what. There are many stages of emotions that we all go through, and you will go through them too, just a suggestion, you might want to see a counselor to have someone to talk to about these emotions, I found that when I tried to talk to my partner about my emotions especially my anger, she would kind of take the blame, and that is not what I wanted, I just needed to talk about my feelings, so a third party is sometimes a good way to go. Please try to feel better, I will keep you in my prayers..

    God Bless
    HUGS
    Beth

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