Your biggest misconception

2

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    ron50 said:

    A sad confession.
    Without trying to upset anyone I must confess that my ideas of cancer were way off the mark. At the time I was suffering severe long term depression and when I was dx with cancer my first thought was "Yeah that'd be right". My surgeon and onc were not very encouraging about my survival prospects due to the advanced nature and aggressiveness of my cancer. I thought about it and cosidered that hey perhaps this is perfect,an honorable way out,if I take all the treatment no one could say that I copped out and the effects on my family would be less than other avenues that I had considered.
    Well I got that wrong ,here I am nearly thirteen years later,the universe has no compassion or just doesn't care. Perhaps the secret of survival is not worrying about surviving. Ron.

    And being loved by all of us!!!!
    You were one of my inspirations, dear Ron, and I am so happy you survived, whatever the stars and the universe says!!!

    Hugs, Kathi
  • Shayenne
    Shayenne Member Posts: 2,342
    KathiM said:

    And being loved by all of us!!!!
    You were one of my inspirations, dear Ron, and I am so happy you survived, whatever the stars and the universe says!!!

    Hugs, Kathi

    Me Too Ron!!
    ...You were always an inspiration to me, and still are, as is Kathi and Phil, you make me look forward to living with the cancer with smile on my face.

    I had the same misconception as Tina did, that I'd me bald, and skinny (though I needed to lose a few pounds at the time, but didn't want to lose it that way.) I though my kids would be watching me suffer watching me throw up blood and puke everyday, that I'd be in insufferable pain everyday, that I'd be bedridden and not able to do anything anymore.

    Now, my 15 year old even told me that if she was ever diagnosed with cancer, she wouldn't be afraid anymore, because she can see how the chemo isn't hurting or ruining my life, and I'm glad my kids are seeing that, I try to make it like it isn't the worse thing in the world, and people all around the world still have it as worse as I do, living in poverty and disease, who don't have the medicines we have, and are suffering worse then us, and she knows that too, and we are more fortunate then they are.

    But yeah, cancer isn't what I though it be.

    Hugsss!
    ~Donna
  • z
    z Member Posts: 1,414 Member
    ron50 said:

    A sad confession.
    Without trying to upset anyone I must confess that my ideas of cancer were way off the mark. At the time I was suffering severe long term depression and when I was dx with cancer my first thought was "Yeah that'd be right". My surgeon and onc were not very encouraging about my survival prospects due to the advanced nature and aggressiveness of my cancer. I thought about it and cosidered that hey perhaps this is perfect,an honorable way out,if I take all the treatment no one could say that I copped out and the effects on my family would be less than other avenues that I had considered.
    Well I got that wrong ,here I am nearly thirteen years later,the universe has no compassion or just doesn't care. Perhaps the secret of survival is not worrying about surviving. Ron.

    Ron
    Hi Ron,

    I am happy you were able to survive and I hope you are no longer depressed. I understand what your saying, before I was dx with anal cancer, I just didn't feel good at all, and thought I wish I would just die. I can't believe I just put that into words. I truly believe that because I felt so bad physically, that this contributed to my depression. Now after I show ned after completing tx 6-30-09, I have never wanted to live so much, and feel better than I have in years. I hope you are feeling the same. Lori
  • z said:

    Ron
    Hi Ron,

    I am happy you were able to survive and I hope you are no longer depressed. I understand what your saying, before I was dx with anal cancer, I just didn't feel good at all, and thought I wish I would just die. I can't believe I just put that into words. I truly believe that because I felt so bad physically, that this contributed to my depression. Now after I show ned after completing tx 6-30-09, I have never wanted to live so much, and feel better than I have in years. I hope you are feeling the same. Lori

    This comment has been removed by the Moderator
  • lmchils57
    lmchils57 Member Posts: 59
    That I would be the one fighting colon cancer not my son
    That I would be the one fighting colon cancer not my son. It was the worst day of my life, the day he was diagnosed. The first thoughts was how, he is too young, and it should be me since it was my dad who had it first. But things don't always work that way and we adjusted and so far he is doing well and so are we. It does help that my dad beat it so I remind myself that it can happen and that this is not necessarily the end by any means. I have really come to admire him and his determination to live for his boys, without them I am not sure he would be as determined, they are his reason for living. He has his 11th treatment on Tuesday, and finds out how his last CTScan came out and what his new CEA count is. His CEA count has been steadily dropping and the enlargement of his liver is way down. I too have been surprised at how little the chemo has affected him, I watched my fatehr-in-law go through chemo in the 80's for lung cancer and he became a shell of a man before he died. I swore I would never do chemo unless they could give me a better chance then just to add a year to my life and a lot of that year was ot quality at all, and like many I did not realize the differences in the different types of chemo and of course this was 26 years ago and a lot has changed since then. It has been an interesting experience and it really has just begun since he is almost to the end of this round of treatments and we then find out the next steps. I too was expecting to have to quit work or cut back considerably and to have to be taking care of Scott but I really have not had to do that.
    I would never have thought and I did not at first feel I would be strong enough to go through this with one of my children but I have found stregnth I did not know I had.

    Taking one day at a time-
    Linda
  • KathiM
    KathiM Member Posts: 8,028 Member
    lmchils57 said:

    That I would be the one fighting colon cancer not my son
    That I would be the one fighting colon cancer not my son. It was the worst day of my life, the day he was diagnosed. The first thoughts was how, he is too young, and it should be me since it was my dad who had it first. But things don't always work that way and we adjusted and so far he is doing well and so are we. It does help that my dad beat it so I remind myself that it can happen and that this is not necessarily the end by any means. I have really come to admire him and his determination to live for his boys, without them I am not sure he would be as determined, they are his reason for living. He has his 11th treatment on Tuesday, and finds out how his last CTScan came out and what his new CEA count is. His CEA count has been steadily dropping and the enlargement of his liver is way down. I too have been surprised at how little the chemo has affected him, I watched my fatehr-in-law go through chemo in the 80's for lung cancer and he became a shell of a man before he died. I swore I would never do chemo unless they could give me a better chance then just to add a year to my life and a lot of that year was ot quality at all, and like many I did not realize the differences in the different types of chemo and of course this was 26 years ago and a lot has changed since then. It has been an interesting experience and it really has just begun since he is almost to the end of this round of treatments and we then find out the next steps. I too was expecting to have to quit work or cut back considerably and to have to be taking care of Scott but I really have not had to do that.
    I would never have thought and I did not at first feel I would be strong enough to go through this with one of my children but I have found stregnth I did not know I had.

    Taking one day at a time-
    Linda

    Children, regardless of age, are so dear to us!
    As a parent caring for a sick child, I know what you say about strength...

    We do what we have to, and then, if necessary, the tears fall into the pillow, where no one sees them...

    I am very happy that your son's numbers are better, and that everything seems to be working...

    Please be careful for yourself to be checked frequently...especially your yearly gyn exams...the beast can be sneaky. I don't say that to make you sad, just to make you wiser than you already are! As caregivers, we tend to ignore our own health, but without it, we cannot be there for others...

    BIG hugs, Kathi
  • lmchils57
    lmchils57 Member Posts: 59
    KathiM said:

    Children, regardless of age, are so dear to us!
    As a parent caring for a sick child, I know what you say about strength...

    We do what we have to, and then, if necessary, the tears fall into the pillow, where no one sees them...

    I am very happy that your son's numbers are better, and that everything seems to be working...

    Please be careful for yourself to be checked frequently...especially your yearly gyn exams...the beast can be sneaky. I don't say that to make you sad, just to make you wiser than you already are! As caregivers, we tend to ignore our own health, but without it, we cannot be there for others...

    BIG hugs, Kathi

    Thanks Kathi
    Thanks Kathi and I understand about taking care of myself, I find myself thinking i have no time to be sick and that nothing can happen to me as I have to take care of Scott. I have always had my coloscopies like I should but am lax on the mamograms, which is rather bad on my part since my neice and mom boht have had breast cancer. Glad to say both are long term survivors now!

    Hugs to you too-
    Linda
  • vchildbeloved
    vchildbeloved Member Posts: 133
    KathiM said:

    Children, regardless of age, are so dear to us!
    As a parent caring for a sick child, I know what you say about strength...

    We do what we have to, and then, if necessary, the tears fall into the pillow, where no one sees them...

    I am very happy that your son's numbers are better, and that everything seems to be working...

    Please be careful for yourself to be checked frequently...especially your yearly gyn exams...the beast can be sneaky. I don't say that to make you sad, just to make you wiser than you already are! As caregivers, we tend to ignore our own health, but without it, we cannot be there for others...

    BIG hugs, Kathi

    Linda, I know what you mean
    Linda, I know what you mean concerning your children being seriously ill. I never thought that 5 months after I was diagnosed with stage 3 colon cancer in 08, my 32 year old son was diagnosed with stage 2. I had to be strong for the both of us; watching him undergo surgery and then 1 year of treatment. That is a journey I never expected to be on. We are both doing great; but I can honestly tell you the journey continues as I not only watch out not only for my health, but his as well. People are always commenting on the amount of strength I have shown throughtout all this. They don't know all the times way in the wee hours of the night how I cried for the both of us. I tell them that it was not strength in myself that got us through, but I truly did have o depend on and lean on the strengt of God. My son and his wife just gave birth to their first baby girl; something that they were told would never happen because of the meds my son was taking. SHE'S BEAUTIFUL!
  • traci43
    traci43 Member Posts: 773 Member
    Surreal
    That's the way I describe this whole thing. I had no symptoms--well none until my stomach swelled from ascites. I always expected to have heart disease or lung disease, as that's what runs in my family, not cancer. After all I lost 100 pounds 12 years ago and was in the best health of my adult life. How could I have colon cancer?

    After all I've been through - 2 surgeries, HIPEC and a total of 26 courses of FOLFOX & Avastin, I still sometimes thinks how the hell did I get here? But I will fight this tooth and nail to keep from letting cancer get me--I just won't let it!
  • Crow71
    Crow71 Member Posts: 679 Member
    Great question Tootsie. The
    Great question Tootsie. The responses are really interesting.

    At diagnosis I thought that a person would have a certain amount of chemo and then be declared victorious or dead. I didn't realize that each case is unique. I didn't realize that there are so many ways to fight and manage this disease. I didn't realize that you could live for years and years with this unwanted band of bastards inside of you. We all work to become victorious one day. In the meantime, it's up to us to really live. I love this board because, through the ups and downs, we live like winners.
    Take care - Roger
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    Expectations
    So many. My mom died of breast cancer at 30, so I thought for sure I would get breast cancer, not colon cancer. Especially since I have had colonoscopies since 50. Three years between was too long. I thought I would die, I am still alive. Thought chemo was more doable, everyone else seem to make it thru, lose of hair maybe. Golly that was an experience.....Cancer has been a really confusing experience, still trying to figure it out, but glad to be surviving..Pat
  • ketziah35
    ketziah35 Member Posts: 1,145

    I had no symptoms at all. How could I have cancer without sympt
    I had no symptoms at all. How could I have cancer without symptoms? I felt fine and had no problems. I went in for a routine colonoscopy. I wondered if the machines were malfunctioning.... Then I remembered a college friend died at the age of 54. She had colon cancer and it had already spread to her liver, lungs, back and leg.

    That after chemo. The cancer
    That after chemo. The cancer journey ends. It will always be lurking in the bsckground.
  • adamommy
    adamommy Member Posts: 15
    HollyID said:

    MIne was kinda like Kathy's...
    I thought I'd be sick as a dog. I had the easiest time with my chemo. No nausea, no vomiting, no whatever.

    Now my mother on the other hand thought no women could get colon cancer. I laughed and told her that I won't ever get prostate cancer or testicular cancer. She was really shocked when I told her. :o)

    No Side Effects Huh?
    Holly you are truly lucky. I have heard so many horror stories about the side effects of chemo. I just got my mediport implanted yesterday and I am scheduled for my first treatment on July 19. To say the least I am scared to death not knowing what to expect. I am still recovering from my colon resection surgery which I had almost a month ago. However, I think I am freaking out more at the thought of starting chemo than I did for the surgery. With the surgery I knew what to expect afterwards but with the chemo I don't have a clue and thats whats so scary.

    God Bless You All
    ADAmommy
  • John23
    John23 Member Posts: 2,122 Member
    ron50 said:

    A sad confession.
    Without trying to upset anyone I must confess that my ideas of cancer were way off the mark. At the time I was suffering severe long term depression and when I was dx with cancer my first thought was "Yeah that'd be right". My surgeon and onc were not very encouraging about my survival prospects due to the advanced nature and aggressiveness of my cancer. I thought about it and cosidered that hey perhaps this is perfect,an honorable way out,if I take all the treatment no one could say that I copped out and the effects on my family would be less than other avenues that I had considered.
    Well I got that wrong ,here I am nearly thirteen years later,the universe has no compassion or just doesn't care. Perhaps the secret of survival is not worrying about surviving. Ron.

    Ron -


    Re:
    "Perhaps the secret of survival is not worrying about surviving. "

    Your story struck home for me. BTDT. I may not have the fish to
    show for it, but I smell as bad.

    Stay well, willya'?

    John
  • msccolon
    msccolon Member Posts: 1,917 Member
    adamommy said:

    No Side Effects Huh?
    Holly you are truly lucky. I have heard so many horror stories about the side effects of chemo. I just got my mediport implanted yesterday and I am scheduled for my first treatment on July 19. To say the least I am scared to death not knowing what to expect. I am still recovering from my colon resection surgery which I had almost a month ago. However, I think I am freaking out more at the thought of starting chemo than I did for the surgery. With the surgery I knew what to expect afterwards but with the chemo I don't have a clue and thats whats so scary.

    God Bless You All
    ADAmommy

    you are not alone
    everyone is scared of chemo the first time in; the unknown and we've all heard so many stories. Just remember, you are an individual and will have your own individual response(s) to the chemo, and there's nothing that says it won't be a positive response! I remember a guy who was getting chemo with me and he was doing oxi and went back to the office after getting it and the days following. He said sometimes he was tired, but that's it! I wasn't so lucky, but you could be like him. What chemo are you getting?
    mary
  • HollyID
    HollyID Member Posts: 946 Member
    adamommy said:

    No Side Effects Huh?
    Holly you are truly lucky. I have heard so many horror stories about the side effects of chemo. I just got my mediport implanted yesterday and I am scheduled for my first treatment on July 19. To say the least I am scared to death not knowing what to expect. I am still recovering from my colon resection surgery which I had almost a month ago. However, I think I am freaking out more at the thought of starting chemo than I did for the surgery. With the surgery I knew what to expect afterwards but with the chemo I don't have a clue and thats whats so scary.

    God Bless You All
    ADAmommy

    ADAmommy
    I was scared too. My nephew had leukemia and he was sick as a dog with his chemo. I thought I was going to be the same. One thing I did learn was after the first two rounds of chemo I knew what to expect and what drugs were going to help. My oncologist (onc) prescribed ativan which helped me sleep the first night of chemo because of all the dexamethazone or the steroids they gave me. I also had to take a mild laxative because of the anti-nausea medications they give can stop you up.

    I got a bit of neuropathy in my hands and feet from the oxaliplatin, and even though I didn't make it through all 12 doses of it, I still have some pain in my fingertips and once in a great while, my feet tingle. Better than cancer though, right?

    Hopefully the nurse went over all the side effects from your chemo drugs. Some can contradict each other and some you never get. Some you do. It's a roll of the dice. :)
  • HollyID
    HollyID Member Posts: 946 Member
    adamommy said:

    No Side Effects Huh?
    Holly you are truly lucky. I have heard so many horror stories about the side effects of chemo. I just got my mediport implanted yesterday and I am scheduled for my first treatment on July 19. To say the least I am scared to death not knowing what to expect. I am still recovering from my colon resection surgery which I had almost a month ago. However, I think I am freaking out more at the thought of starting chemo than I did for the surgery. With the surgery I knew what to expect afterwards but with the chemo I don't have a clue and thats whats so scary.

    God Bless You All
    ADAmommy

    ADAmommy
    I was scared too. My nephew had leukemia and he was sick as a dog with his chemo. I thought I was going to be the same. One thing I did learn was after the first two rounds of chemo I knew what to expect and what drugs were going to help. My oncologist (onc) prescribed ativan which helped me sleep the first night of chemo because of all the dexamethazone or the steroids they gave me. I also had to take a mild laxative because of the anti-nausea medications they give can stop you up.

    I got a bit of neuropathy in my hands and feet from the oxaliplatin, and even though I didn't make it through all 12 doses of it, I still have some pain in my fingertips and once in a great while, my feet tingle. Better than cancer though, right?

    Hopefully the nurse went over all the side effects from your chemo drugs. Some can contradict each other and some you never get. Some you do. It's a roll of the dice. :)
  • adamommy
    adamommy Member Posts: 15
    msccolon said:

    you are not alone
    everyone is scared of chemo the first time in; the unknown and we've all heard so many stories. Just remember, you are an individual and will have your own individual response(s) to the chemo, and there's nothing that says it won't be a positive response! I remember a guy who was getting chemo with me and he was doing oxi and went back to the office after getting it and the days following. He said sometimes he was tired, but that's it! I wasn't so lucky, but you could be like him. What chemo are you getting?
    mary

    Thanks so Much
    Thanks so much for the encouraging words. I don't know yet what chemo I'm getting. When I find out I will let you all know. Thanks again for the encouraging words. Everyone on this blog has been so kind and so informative. I feel so lucky to have found you guys.

    God Bless
  • adamommy
    adamommy Member Posts: 15
    HollyID said:

    ADAmommy
    I was scared too. My nephew had leukemia and he was sick as a dog with his chemo. I thought I was going to be the same. One thing I did learn was after the first two rounds of chemo I knew what to expect and what drugs were going to help. My oncologist (onc) prescribed ativan which helped me sleep the first night of chemo because of all the dexamethazone or the steroids they gave me. I also had to take a mild laxative because of the anti-nausea medications they give can stop you up.

    I got a bit of neuropathy in my hands and feet from the oxaliplatin, and even though I didn't make it through all 12 doses of it, I still have some pain in my fingertips and once in a great while, my feet tingle. Better than cancer though, right?

    Hopefully the nurse went over all the side effects from your chemo drugs. Some can contradict each other and some you never get. Some you do. It's a roll of the dice. :)

    Please explain
    When you said you didn't make it through all 12 doses of the oxaliplatin what happened? Did you start to have a bad reaction?
  • HollyID
    HollyID Member Posts: 946 Member
    adamommy said:

    Please explain
    When you said you didn't make it through all 12 doses of the oxaliplatin what happened? Did you start to have a bad reaction?

    I did have an allergic reaction
    to the oxaliplatin about 20 minutes into the 7th round of chemo. Have you mentioned what stage you are? I can't remember if you have.