5 Years ago today

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Annabelle41415
Annabelle41415 Member Posts: 6,742 Member

It was five years ago today that I've received the devestating news.  Thanksgiving is a bitter/sweet memory for me as I'm thinking that the day before was a mixed emotion because they told me I'd have to wait until the following Monday for results and then having to go through Thanksgiving dinner (which was at my house) and then telling everyone that I'd be fine.  Actually five years later it is fine but that doesn't mean that I'm still not scared about the colonoscopies in the future or every pain that surfaces.  It's hard and I'll never forget that ride back from the doctor's 5 years ago today.  It seems so long ago, but so much has happened and I'm a different person.  A person I'd never dreamt I'd be.  A person I'd never really wanted to be.  Mags had a post about her husband saying that she seemed so angry since diagnosis, but I'm seeing the same thing in me.  Not really trying to be angry, but I'm just angry about how I'm still going to the bathroom 20 times a day, can't go to family functions because I'm not sure if I'll have to have a spasmic rectum because of food that was eaten 10 minutes ago and then spend 1 hour trying to expel a little squirt at a time thinking that I've accomplished something, but looking in the toilet and finding just that, a squirt.  For all that urgency, I'd want some better production, but it doesn't happen.  If I'm not able to go to the bathroom without having to take something to help me go for the day, I'm so backed up and my stomach is so hurting, then I'm not able to sleep and I'm just miserable.  I'm thinking that rectal cancer has a different effect on people than colon cancer but I'm not sure.  Just know that my rectum was remade and I'm still miserable.  5 Years is a good goal and I'm glad that I've made it.  I'm praying for all of you everyday.  Tomorrow it's Thanksgiving and whatever it brings, I'm glad that I've got you all to say Happy Thanksgiving to. 

Hugs!  Kim

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  • devotion10
    devotion10 Member Posts: 623 Member
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    Kim ... I love to see your picture when I come to the site and

    read your thoughtful comments.  I wish you courage as you go forward.  I wish no one had to deal with any of this ... ever.

    Peace ~ Cynthia

  • Gavin63
    Gavin63 Member Posts: 98 Member
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    HELLO

    Hello Kim,

    I love your inspirational comments. I feel good to read the positive comments from the members of board who are fighting this dreadful decease. I feel sorry for me and all members of the board fighting this monster out. I have just began my journey & set a goal to witness my Triplet’s High School graduation. Long way to go though. But I will fight my way out to make it Smile with the support this wonderful forum.    

    Keep posting & encourage the members. Happy Thanks giving to you & your family so as to all my friends on the board.

    Off to my 1st Chemo (Oxy + 2 weeks of Xeloda) today.

    Gavin

  • sharpy102
    sharpy102 Member Posts: 368 Member
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    Gavin63 said:

    HELLO

    Hello Kim,

    I love your inspirational comments. I feel good to read the positive comments from the members of board who are fighting this dreadful decease. I feel sorry for me and all members of the board fighting this monster out. I have just began my journey & set a goal to witness my Triplet’s High School graduation. Long way to go though. But I will fight my way out to make it Smile with the support this wonderful forum.    

    Keep posting & encourage the members. Happy Thanks giving to you & your family so as to all my friends on the board.

    Off to my 1st Chemo (Oxy + 2 weeks of Xeloda) today.

    Gavin

    changing...

    Hey Kim:


    Reading your post I can see how you've changed health wise. And I am sure it is very bad, and annoying and you truly wish you were your old self. But, look at the side side of the coin. You've changed as a person too. You value things probably way more now than when you were your old self. You pay more attention to people, of how they think, how they feel. You appreciate smaller things than 5 years ago. I always believe that everything has a reason. And yes, it would be the most optimal to be cured and then bounce back to be healthy but we would then be very different than this way. I am not trying to say that you should be happy you have this health problem...I'm just trying to show you that there are "good sides" of your journey that lead you to where you are right now and in what condition you are now in. You know my story, and well, honestly, I often think how different I would be. Probably would take things for granted, and would be complaining how embarassing my parents are, and how they get on my nerves, and I wish they left for a good two week vacation so they would stop bossing me around. And probably I would be demanding, and saying I want this and that, and if they didn't get it for me I would be upset at them. And although I don't have any health related problem that remained from 4 years ago but now I have definitely changed. I would give the world for a "family dinner". So, all in all, I just want to tell you that maybe this is how it supposed to be for you, so that you'll always, and always remember what you have gone through, so that you'll always pay attention to yourself. Maybe if you didn't have any health issues related, you would pay less attention to yourself saying you're happy and healthy. This way, you're always going to be at an alarm...and although it sounds annoying, and miserable...who knows, it may be a good thing! I wish you a very Happy Thanksgiving! Eat a lot of bird! :) Please take care!

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
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    Anniversaries

    Anniversries of horrific events such as first notification by our doctor, loss of loved ones, and other sad moments can often be hard.  

    I feel that we have to deal with these moments to appreciate where we are now and how far we have come.  Well made point that even though there is still pain, there is also growth as well.

    Glad you are hanging in with us Kim.  We are better off for it.

    Peace,

    Art

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    I'm glad you're here!

    Your symptoms sound very similar to my brother's. He now has rectal cancer mets but had rectal cancer surgery two years ago and his bowels have never been the same since. Sometimes he can't hold it in time to make it to the bathroom and other times he struggles to make a little squirt. I feel for you! I know you're grateful that you're here, but it would be so much better if your rectum cooperated. Lots of hugs to you! Happy Thanksgiving!

    Lin

    PS I pray for everyone on this board, the sick, the deaprted and the caregivers. Cancer sucks!

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Giving thanks

    I am sorry that you feel angry, Kim. I certainly can't tell it when I read your wonderful posts.

    I do believe you were one of the first to respond to my initial joining thread and I'm sure you were the one who stuck up for me when someone from another cancer board told me that I shouldn't open a new post about a problem that had been posted before. Yes, I always enjoy seeing your avatar (so beautifu) and reading what you have to say.  

    I have noticed this past week that I have been ignoring my 10 year journal which I write in every day, and realized it is because I don't want to be reminded of how I was feeling this time last year when I was diagnosed and had my surgery. I had my surgery the day after Thanksgiving, which meant I spent Thanksgiving drinking the clean-out fluid and sitting on the loo. 

    It seems that many of us here were diagnosed around November, December. Happy Holidays indeed.

    I keep hoping that my side-effects go away at some point, but know that if they don't, I'm not alone. I too have to go to the loo frequently, and realize that my little house (and I mean little) is just about right for me to get to the loo in time as the bowel does not give me any notice and its a matter of running like a penguin and hoping I get there in time. 

    I am happy for your five years, though wish it were missing those darned side-effects. Here's to another five and more. 

    Hugs and blessings!

  • jen2012
    jen2012 Member Posts: 1,607 Member
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    Happy Thanksgiving Kim. Im
    Happy Thanksgiving Kim. Im sorry you have so many issues due to this damn disease, but as others say we dont see the anger. You always come across as gracious, warm and encouraging. Enjoy the day with yoir family.
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    I am so glad you are stil

    I am so glad you are stil here and a big part of this community. A lot of your comments about how you have changed are similar to me. It has been over 8 years for me but I find myself changing the most in just the past month. I feel more withdrawn and isolated from friends and family. Lately I feel like I am fighting manic depression. It just comes and goes so fast. I have colon cancer but have a lot of the issues you have but just not as often as you described. I think the last 12 rounds of FOLFIRI permanently damaged my stomach. I get severe stomach pain about once a month to the point that I contemplate going to the ER. I had one of those days on Tuesday. I was afraid I would be sick for thanksgiving and we have 10 people over today. Fortunately it cleared up and I am fine now.

    The hardest part is that I suck it up and keep it to myself when I am suffering so I don't put my wife into a panic. If she only knew how many issues I really have mentally and physically.

    With all that said I am so greatful for you and everyone (family) on this forum.

    Happy Thanksgiving.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Interesting

    Reading how several of you long term survivors feel, makes me wonder if part (maybe a small part) of the aggitation may be caused by the fact that when you have survived so long, people immedietely think that there is no longer anything wrong with you. 

    Let me explain. Now that I have had one clear scan, I find that everyone I knows who hasn't had any experience with cancer, just assume that I'm well now and there are no problems. They don't know all the things I go through each day, well, the personal things related to bowel, butt, bowel movements, itching, sores, the fact that I can't have sex, all those words we don't use in public. 

    I personally find that a bit irritating and my pat answer when they say something like 'I'm glad you are cured' is that 'I still have issues'. 

    I was just wondering if that may play a part in the angry feelings or the feelings of being withdrawn.

    Gosh, I hope I'm helping and not hindering here. 

  • maglets
    maglets Member Posts: 2,576 Member
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    Trubrit said:

    Interesting

    Reading how several of you long term survivors feel, makes me wonder if part (maybe a small part) of the aggitation may be caused by the fact that when you have survived so long, people immedietely think that there is no longer anything wrong with you. 

    Let me explain. Now that I have had one clear scan, I find that everyone I knows who hasn't had any experience with cancer, just assume that I'm well now and there are no problems. They don't know all the things I go through each day, well, the personal things related to bowel, butt, bowel movements, itching, sores, the fact that I can't have sex, all those words we don't use in public. 

    I personally find that a bit irritating and my pat answer when they say something like 'I'm glad you are cured' is that 'I still have issues'. 

    I was just wondering if that may play a part in the angry feelings or the feelings of being withdrawn.

    Gosh, I hope I'm helping and not hindering here. 

    right

    hi trubrit....no I think you are onto something....I am 5 years out from death diagnosis and I think you have something there for sure. I was at a party not long ago and someone said to me...." maybe you didn't ever have cancer at all!!!!" oh good grief.....no the world moves on and it leaves us behind and we should not whine cuz we are still breathing.....

    Kim I am so so sorry you still have so many bathroom issues and Jeff you too.....I went to see my surgeon just yesterday for post colonoscopy and I said....so tell me about digestive issues after 2 liver resections and no gall bladder.  He laughed and said it has to do with the lack of available bile.....digestion swings from wild runs to constipation sometimes with great pain.  He was not concerned....he had no suggestions and just thought it was totally normal. Kim I know it is counterintuitive but have you ever increased your fiber? I have heard this might help....and Jeff fat is our enemy....really try to cut it right back and see if that helps your pain.  of course then there is the possibility that all these surgeries and all this chemo has just messed our digestive tract for good......sigh.....might as well have a glass of vino.  I toast you and salute you all my dear American friends...happy Thanksgiving.....

     

    mags

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    Dear Kim,

    Even when we were healthy we had a hard time living with certain things that just come with life. Cancer really teaches you to live with a lot of stuff on an extremely tough level. We have got to try. LIFE wants to stay alive and live.

    Before my surgery I shared your bathroom drama too countless of times a day. Now it's getting better, but still has it's challenges.

    Wishing you a Happy Thanksgiving and better and better ones as we go.

    Laz

  • marbleotis
    marbleotis Member Posts: 720 Member
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    5 years is a great milestone

    Kim,

    5 years is a great accomplishment.  I know this changes us, in some good ways but also in some not so good ways.  This does not come with an instruction manual on how to handle the aftermath. 

    Let no one judge us unless they walk in our shoes for 5 minutes!

    This is not easy.

    Please enjoy this day - you have earned it!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    maglets said:

    right

    hi trubrit....no I think you are onto something....I am 5 years out from death diagnosis and I think you have something there for sure. I was at a party not long ago and someone said to me...." maybe you didn't ever have cancer at all!!!!" oh good grief.....no the world moves on and it leaves us behind and we should not whine cuz we are still breathing.....

    Kim I am so so sorry you still have so many bathroom issues and Jeff you too.....I went to see my surgeon just yesterday for post colonoscopy and I said....so tell me about digestive issues after 2 liver resections and no gall bladder.  He laughed and said it has to do with the lack of available bile.....digestion swings from wild runs to constipation sometimes with great pain.  He was not concerned....he had no suggestions and just thought it was totally normal. Kim I know it is counterintuitive but have you ever increased your fiber? I have heard this might help....and Jeff fat is our enemy....really try to cut it right back and see if that helps your pain.  of course then there is the possibility that all these surgeries and all this chemo has just messed our digestive tract for good......sigh.....might as well have a glass of vino.  I toast you and salute you all my dear American friends...happy Thanksgiving.....

     

    mags

    Mags I read it is mainly

    Mags I read it is mainly saturated I.e.fried foods which I rarely for peolple that had thier gallbladder removed. I remember talking to my onc after my second liver resection and he said that you have to remember you digestive system is 12" shorte which was a good point. However no one tells you how having your liver chopped three times can effect you which I am sure it does. The doctors never told me about possible issues from having my gallbladder removed. I had to find that out on my own. I still like to put some of the blame on chemo especially since I have so much more faith in surgery than I do in chemo.

    Trubrit you are only expressing your opinion from your experiences. There is nothing wrong with that. That is what we are here for is to listen understand

    Support and love each other. I have so much compassion for everyone here. 

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    Anniversaries

    Anniversries of horrific events such as first notification by our doctor, loss of loved ones, and other sad moments can often be hard.  

    I feel that we have to deal with these moments to appreciate where we are now and how far we have come.  Well made point that even though there is still pain, there is also growth as well.

    Glad you are hanging in with us Kim.  We are better off for it.

    Peace,

    Art

     
    My Rick passed away on

     

    My Rick passed away on Thanksgiving morning last year, so this has been a very difficult day for me.  I don't feel growth from this situation, just the opposite.  I am extremely depressed, although I try to hide it from my family/friends/co-workers, but sometimes it doesn't work and my emotional pain shows through the facade.  I don't care about the little problems in life anymore, because I don't care about much of anything anymore.  I couldn't care less about my own health and have considered ending it all many many times during extreme bouts of grief and depression.  The only thing that has gotten me through the past few months have been my dear friends on this board, and my new kitten, Sophie (she makes me smile when I'm feeling down).  So no, I find nothing good about this @##$%# disease whatsoever.  It has taken from me the only man that I have ever truly loved, so I will never be whole, nor happy, ever again.

    But hang on Kim, you've made it this far, so you have a good chance of keeping the beast at bay for a very long time.  And yes, I know that you're not feeling so well, but take comfort in that your presence at the Thansgiving Day table continues to bring joy to your family.  May you have many more holidays to celebrate with them.

    I wish you well,

    Luv,

    Cyn

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    My Rick passed away on

     

    My Rick passed away on Thanksgiving morning last year, so this has been a very difficult day for me.  I don't feel growth from this situation, just the opposite.  I am extremely depressed, although I try to hide it from my family/friends/co-workers, but sometimes it doesn't work and my emotional pain shows through the facade.  I don't care about the little problems in life anymore, because I don't care about much of anything anymore.  I couldn't care less about my own health and have considered ending it all many many times during extreme bouts of grief and depression.  The only thing that has gotten me through the past few months have been my dear friends on this board, and my new kitten, Sophie (she makes me smile when I'm feeling down).  So no, I find nothing good about this @##$%# disease whatsoever.  It has taken from me the only man that I have ever truly loved, so I will never be whole, nor happy, ever again.

    But hang on Kim, you've made it this far, so you have a good chance of keeping the beast at bay for a very long time.  And yes, I know that you're not feeling so well, but take comfort in that your presence at the Thansgiving Day table continues to bring joy to your family.  May you have many more holidays to celebrate with them.

    I wish you well,

    Luv,

    Cyn

    Dear Cyn

    I wish I could crawl through this computer and give you the biggest, longest hug.

    My heart weeps for your pain, and I pray that you can find comfort as time moves on. 

    I am so glad that you have little kitty with you. Squeeze her and feel her warmth, that is the warmth we have in our hearts for you.

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    Awww...

    Sue, thank you....I wish I could just hibernate through the entire holiday season. 

    Hugs,

    Cyn

  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
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    Awww...

    Sue, thank you....I wish I could just hibernate through the entire holiday season. 

    Hugs,

    Cyn

    Hi Kim

    hope you had a good thanksgiving anyway.i hear all of you with the bathroom issues and mags you were right on.sometimes diareah gets a hold on me and the next thing i know i cant go.i have a flex sigmoid coming up on monday and i have not had a bm in two days.im praying that this is not something like a blockage.you are so right if things are not moving well then we always feel there could be something wrong.im glad you have made it 5 years clear but im sorry that this journey brings us all so many troubles...Godbless...johnnybegood

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    I really relate to what you're saying, Kim.

    As you know, for me it's the joint pain that is the lasting side effect (although my bowels are wonky too, but I think you're right that rectal cancer tx is harder on the digestive system in the long-term than what most of us get for colon cancer).  I started having periods of pretty intense depression once I realized that I was never going to be truly "fixed".  When I was in tx, I assumed that I would either make it, and be healthy again, or die.  I never understood that I would end up up in this no man's land, between living a full life, and not living at all.

    I don't feel that I should ever complain about this, given all who have died who deserved life as much I do (including my own sister), but I think we try to be honest on this board about the cancer journey, so I guess I should be more honest about this aspect of it.

    Yes, it's great to be alive, but it sucks to live with chronic illness.  Severe bowel problems, joint problems, and the like, make it impossible to live our lives as we once did, and that's a hard thing to accept, esp when you are as young as we are (at least in the context of cancer...I guess I'm kind of an old lady in the eyes of my kids).  On the one hand, facing years of life is great, and what we all fight for; on the other hand, facing a long life filled with suffering is pretty daunting at times.

    I have no advice, as I haven't yet figured out how to deal with this myself.

    But I am sending lots of hugs and love your way.

    AA

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    I really relate to what you're saying, Kim.

    As you know, for me it's the joint pain that is the lasting side effect (although my bowels are wonky too, but I think you're right that rectal cancer tx is harder on the digestive system in the long-term than what most of us get for colon cancer).  I started having periods of pretty intense depression once I realized that I was never going to be truly "fixed".  When I was in tx, I assumed that I would either make it, and be healthy again, or die.  I never understood that I would end up up in this no man's land, between living a full life, and not living at all.

    I don't feel that I should ever complain about this, given all who have died who deserved life as much I do (including my own sister), but I think we try to be honest on this board about the cancer journey, so I guess I should be more honest about this aspect of it.

    Yes, it's great to be alive, but it sucks to live with chronic illness.  Severe bowel problems, joint problems, and the like, make it impossible to live our lives as we once did, and that's a hard thing to accept, esp when you are as young as we are (at least in the context of cancer...I guess I'm kind of an old lady in the eyes of my kids).  On the one hand, facing years of life is great, and what we all fight for; on the other hand, facing a long life filled with suffering is pretty daunting at times.

    I have no advice, as I haven't yet figured out how to deal with this myself.

    But I am sending lots of hugs and love your way.

    AA

    WOW!

    I just want to reach through the screen and hug all of you! I am so sorry that things are so difficult for all of you. You do deserve to complain, it sucks! I see what my brother is going through and I want to scream. It's not fair! I really hope you can all get some relief from your difficulties.

    Lots of hugs!

    Lin

  • maglets
    maglets Member Posts: 2,576 Member
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    Kim

    just a note to say thanks for posting this thread Kim...it is something we do not talk about all that much or openly.  The pain the wounds the hurt is deep.....

    thanks Kim.......mags