This is not cancer related, it's a mostly ostomy/after cancer/people just don't think post.

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Helen321
Helen321 Member Posts: 1,459 Member
edited November 2014 in Colorectal Cancer #1

For all those doing chemo today or on their umpteenth surgery reading this, I'm sorry to whine about this, believe me with what you're going through today, it is not worth your time to read this post=)  I seriously appreciate that what you're going through is bigger than any of this.

As I mentioned last post, I went on the ostomy boards in the beginning but the ostomy boards are full of people who have temporaries or haven't had cancer or can't relate to anal removal and going on there makes me seriously depressed so I stopped.  I tried in the beginning but people would complain about having to live with "this horrible bag" for a few months or most were dealing with IBS and I didn't like hearing that they all had options.  It's hard to have an ostomy and not have a place to talk about it.  I'm now NED for 22 months and still thinking daily about food and better habits to figure out how to stay that way, trying to move on, deal with the mental side of all of this, deal with my divorce, adjust to my new body and figure out how to explain this to a perspective suitor one day.  My therapist (I started going to one at Sloan) says worry about the dating stuff when I get there and for the most part I'm able to do that but my seperation is so new I'm not really into the whole "just focus on yourself" thing yet.  So I'm settling in to the idea that I can do all of this, I'm doing a few flights of stairs, successfully giving up the candy that I crave, switching to almonds and cashews, really appreciating each and every day.  22 months out from surgery and 4 months as a single person, I'm starting to adjust to life really well and then last week my friend/coworker sends me this . . . 

"How to Poop at Work".

https://www.youtube.com/watch?v=e4jfxAVaDFw

Now 23 months ago or maybe 48 months ago really (chemo and radiation sure sucked the joy out of using the bathroom), I would have found this funny (It's not really that funny but the idea of the things women go through just to poop at work has some humor).   But to send this to me now is like sending a video about running to a man that just lost his legs.  I didn't want to make a big deal about it with her because she's a coworker and we just aren't friendly like that so when she came over and said did you see it and I said no and then sent it to me again and again, I finally did watch it.  I should have just said you know it's not really something I want to watch right now but she thinks I overthink things even when I was dealing with cancer.  She always said I was so overdramatic and that has always made me feel a little uncomfortable, maybe I felt a little that way sometimes about my reactions and so it hit me when she said it but truthfully, sometimes I felt terrified.   I just didn't want to have this conversation with her anymore.  I have to say this video was a serious downer.   The depression has me suddenly back at rock bottom.  I mean just a few months out of surgery rock bottom, how am I ever going to date anyone, I'm going to be alone for the rest of my life, if I even make it to 50, rock bottom.  It set off some hidden thoughts and they mostly hit me at bed time when I'm alone and it's quiet.  Where the heck does all of this come from?  Sure I've been secretly worried about the cancer coming back, especially as my 45th birthday approaches, birthdays have a different meaning now, how many more will I have whether cancer gets me or something else?  When people talk about the future, 10 years from now, sometimes I'm okay and sometimes I think, I may not be here.  Wow, I really may not be here!  Recently though, I was able to go days and sometimes a whole week (and even little beyond) without the thought of cancer or death, with 45 coming, I was thinking about turning 50 and maybe even 55 and hey maybe even 65!  I can't seem to see myself past that age in my head at least yet.

Most people who know are very respectful not to talk much about going to the bathroom and there are a few stragglers who bring up the cancer which is okay because they care enough to make sure I'm okay.   The one thing is you don't talk marathons to a person who recently lost the ability to walk and you don't talk funny poop stories with people who have recently attained permanent ostomies.  I wish I didn't have to say that out loud and that it was understood.  I'm going to try some positive focus. I haven't really slept much in the last few years and I think that the constant overtired (I rarely sleep through the night anymore) does have me overthinking a lot of things that I would have normally just shrugged off a few years ago, like people who say dumb things.  It's hard to shrug off cancer or major body changes, I think it takes some overthinking to get to a good point.  I thought I was in the middle of healing but I'm realizing I'm more at the beginning and the beginning doesn't feel very good sometimes.

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  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #2
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    I hear you and you have every

    I hear you and you have every right to feel the way you do. Nobody knows what we're going through no matter how they try to imagine it. Sometimes I'm glad for my ostomy because I did have IBS and it's nice to not have to worry about the things I eat so much. But I'm told the IBS will be worse when I have it reversed. And times when I have to deal with it in public or the middle of the night (usually more than once) or I get some on my hand or it blurps out and gets on my clothes or the skin gets irritated and I have to worry about it all the time that it's full or showing or whatever, I hate it. I have an ugly port in my chest that's purple and very visible, the ostomy bag and a very ugly scar from my surgery because the incision got infected. Sometimes I cry to my husband that I look like Frankenstein.

    I think that part of the problem is that things like the ostomy seem like such a reminder that I have cancer. Don't let your guard down! I'm still here lurking around the next corner! See? Here's the bag and port and scar to remind you! Never forget or relax because I'm the boogyman waiting in the woods and maybe I'll get you again when you least expect it. Maybe I'll move on to someone else and leave you alone. But you'll always live with the fear of me. Forever.

    I hate cancer.

    Jan

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #3
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    JanJan63 said:

    I hear you and you have every

    I hear you and you have every right to feel the way you do. Nobody knows what we're going through no matter how they try to imagine it. Sometimes I'm glad for my ostomy because I did have IBS and it's nice to not have to worry about the things I eat so much. But I'm told the IBS will be worse when I have it reversed. And times when I have to deal with it in public or the middle of the night (usually more than once) or I get some on my hand or it blurps out and gets on my clothes or the skin gets irritated and I have to worry about it all the time that it's full or showing or whatever, I hate it. I have an ugly port in my chest that's purple and very visible, the ostomy bag and a very ugly scar from my surgery because the incision got infected. Sometimes I cry to my husband that I look like Frankenstein.

    I think that part of the problem is that things like the ostomy seem like such a reminder that I have cancer. Don't let your guard down! I'm still here lurking around the next corner! See? Here's the bag and port and scar to remind you! Never forget or relax because I'm the boogyman waiting in the woods and maybe I'll get you again when you least expect it. Maybe I'll move on to someone else and leave you alone. But you'll always live with the fear of me. Forever.

    I hate cancer.

    Jan

    Exactly and to deal with all

    Exactly and to deal with all these other things and to be doing so well just to have someone send me something so thoughtless and inconsiderate rocked me to the core. I did talk with one friend about it and she said it's because I made it look easy to most people and that I seem myself. Of course I do, it's not necessary for everyone to know I'm struggling, especially at work. But this person is aware of the whole shebang. She is in my workgroup so she knows all about my freakouts in the past two years, the thought of being alone for life because I am so physically altered and my noisy, unpredictable ostomy because she's heard it. Is don't see what the point of sending me that video was.  She really just caught me off guard and I took a mental nose dive.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
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    People suck.
     
    im sorry you

    People suck.

     

    im sorry you are having a rough time.  Life is so hard for some.  Others breeze through and just don't get it.   

     

    my 75 yr old father has stomach issues from chemo 10 yrs ago...he told my husband , 48 with stage 4 cancer and an ostomy that he (my husband) was lucky because he could eat whatever he wanted.  Clueless....yeah lucky..

     

    Juat come and vent whenever you want.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #5
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    I disagree

    This is very much Cancer related. 

    Without the Cancer, you wouldn't have the Ostomy, so yes, this is Cancer related. 

    Some people, they just can't see or feel and must be forgiven for their ignorance. 

    I am so very sorry that you have so much going on in your life. I guess I didn't know about the divource. I can't even begin to imagine the hurt, and the adjustment. I am happy that you have a daughter and grandchild who obviously love you very much. 

    I wish I could reach through this computer and give you a big hug. You deserve a big hug. 

    I wish I could make a bigger difference in the lives of everyone here. We deserve so much. 

    I don't have any advice on how to handle those 'people'. Deep breath and turn away I guess.

    Have you tried meditive music or guided imagery to help you get to sleep? I know that doesn't keep us asleep though. 

    HUGS!

    Sue - Trubrit

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #6
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    Wow!

    That is so inconsiderate. If she knows what you went through, that is the last thing she should have sent you. I agree with Jen, people suck!!!!

    I am sorry that things are so rough right now. Seeing a therapist is probably a good idea, this way you can discuss your feeling without judgment. You are not being overly dramatic. You have a right to feel the way you feel. I wish I could also reach through the screen and give you a big hug. All I can say is, keep thinking about that beautiful grandbaby of yours. I know my granddaughter always puts a smile on my face, no matter how down I feel. 

    Feel free to vent anytime! That's what we're here for. Smile

    Lin

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #7
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    Unthinking folks

    For many people in the general public, they don't want to even acknowledge that cancer exists, much less consider all the ramifications of a diagnosis.

    I think the only way to deal with the unthinking folks is directly.  In this case, tell the woman that given your personal situation you don't find that type of "sharing" to be something you want to receive.  Be direct, otherwise, there will be more.

    If she gets her nose out of joint, oh well.  If she causes any issues, remind her that she could be guilty of harassment.  Hopefully it won't go that far and she will just keep that stuff to herself.

    Here is a hug! 

    Marie who loves kitties

    PS  surf the net for intimate ware for those with an ostomy.  You too can still be sexy!

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #8
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    Thanks for the kind words and

    Thanks for the kind words and hugs. I felt so much better after I wrote it down that I had a more relaxed day. The word I would use to describe what she did is cruel. I don't know why she did it.

    Trubrit, I have a 17 year old senile cat that wakes me up like clockwork every night and my own sleep issues sometimes so it's a double whammy.  He's crying right now nonstop and it's 1:45.

    Thanks for listening. I just think of people doing chemo who would be glad to trade places with me and feel a bit ridiculous that these are my posts but there aren't many people who can relate.

    I think the direct approach is the best, I'm going to follow that advice. I was trying not to let her see she got the best of me. 

    And I still feel sexy=} Somewhat anyway. Not the same as before but it's still there. My body is just so extremely altered.  It goes so far beyond the ostomy. You can cover an ostomy.  The hard part is going to be one day finding the right man who gets it.  Who knows maybe 5 years down the road for the big 5-0 this will all be something I can laugh about.  I'll read this post and say really Helen?  Lastl year at this time I really didn't think I'd ever be turning 50 so hey there's some serious positive progress.

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #9
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    Helen321 said:

    Thanks for the kind words and

    Thanks for the kind words and hugs. I felt so much better after I wrote it down that I had a more relaxed day. The word I would use to describe what she did is cruel. I don't know why she did it.

    Trubrit, I have a 17 year old senile cat that wakes me up like clockwork every night and my own sleep issues sometimes so it's a double whammy.  He's crying right now nonstop and it's 1:45.

    Thanks for listening. I just think of people doing chemo who would be glad to trade places with me and feel a bit ridiculous that these are my posts but there aren't many people who can relate.

    I think the direct approach is the best, I'm going to follow that advice. I was trying not to let her see she got the best of me. 

    And I still feel sexy=} Somewhat anyway. Not the same as before but it's still there. My body is just so extremely altered.  It goes so far beyond the ostomy. You can cover an ostomy.  The hard part is going to be one day finding the right man who gets it.  Who knows maybe 5 years down the road for the big 5-0 this will all be something I can laugh about.  I'll read this post and say really Helen?  Lastl year at this time I really didn't think I'd ever be turning 50 so hey there's some serious positive progress.

    I'm getting old...

    I'm forgetting so many things...I thought I had answered this.  (Pick one... alzheimer's or chemo brain).  First of all... your co-worker can go rummage in the trash and leave you the heck alone!  I don't think they need the wrath of the Colorectal group on them.  I don't know why anyone would think this is humorous to send you with the knowledge that you're a survivor.  You know... I've found that ignorance and stupidity are diseases that cannot be cured.  Once gotten... they get into every fiber of your being.  Perhaps your co-worker needed the advice and decided everyone else did too.  BE PROUD of yourself.  You've stepped over trials and tribulations much greater than others could ever understand.  I'm glad you still feel sexy and i KNOW you'll find the right person when you're ready.  While I do not wish this disease on anyone, I certainly wish people had more compassion, understanding and encouragement.  There are days that we keep ourselves down.  We certainly don't need any help from the intellectually unarmed.  As you can tell it just angered me.  Helen you've helped so many people through these discussion boards.  Your worth is what you decide it to be not some twit with no taste! I personally think you're beyond a diamond!

     

    Yolanda

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