About this battle

christeleb
christeleb Member Posts: 60
edited March 2014 in Colorectal Cancer #1
Dear friends,

I was wondering something...

Do you ever feel that you will not win this battle? I mean does it hit you sometimes that NED or a cure will not come around?

I found myself lately having these thoughts, although I'm upbeat MOST of the time. After my RFA on Sept 6th, it's been hard for me to recover physically (tired, back issues for having to sleep flat on my back, neuropathy...).

I don't think I'm depressed (or maybe I'm but i'm in denial!!), but i really can't help it. I started chemo again last week (#6).

I'm always wondering if there is a future. i guess i'm still new dealing with this (dx April 07), so that might explain my "issues".

Sorry about the negative thoughts, but I know that this website is THE place to talk about this.

Thanks for listening,

Christele
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Comments

  • christeleb
    christeleb Member Posts: 60
    Also, for those who don't "know" me, I was diagnosed Stage IV, I'm 36 and I have a 15 months old daughter.

    Christele
  • sladich
    sladich Member Posts: 429
    Christeleb,

    All of us at some point have felt what you are feeling. It will pass. Try and think positive thoughts. You will beat this beast.

    Debbie
  • davidsonxx
    davidsonxx Member Posts: 134
    I think a lot of stage IV people feel like that at some point. I was only stage II and still thought about that a few times during treatment. We have a serious disease and we could lose the fight. Fortunately for me I found some great postings when I was at my lowest point. The essence of them follows.

    Yes I have a potentially fatal disease that could kill me. However I could get killed in a car accident on my way to work tomorrow. Do I obsess about having an accident and never leave my house. No, I take reasonable steps to prevent it and live my life. My cancer may ultimately kill me but NOT TODAY!

    Sometimes we try to look too far into the future and get overwhelmed with what ifs. Try to take it one day at a time and it is much easier to deal with.
  • changing
    changing Member Posts: 134
    It's "normal" to feel this way at times...just don't stay there. I don't know if you were on this site back a few months ago...there was a post calling for all stage 4's. If you can find it, I stongly encourage you to go back and read the posts. Some have been living for 9 and 13 yrs! Very encouraging! Hang in there...we're here for you!
  • mich1968
    mich1968 Member Posts: 9
    Hi, I am mbmeder67 or (michelle) that just posted about the cooking spices (READ IT). I just had my 39th b-day on oct 6, I found out I had stage 3 at 37. I just finished 8 months of 50 hours every 2 week of 5FU the first of may this year. Now that it is Oct I feel like my body is going backwards. Beat up, slowing down. Just remember try to eat as many proteins as you can, keeps up the systems, and remember no matter how bad you feel, if you woke up today, IT HAS TO BE A GOOD DAY. We all have the hard days, and our private moments, and thats ok, if we didn't we would loose our minds. But don't ever let it beat you, if you find yourself somewhere that makes you unhappy, or makes you think of the pickle your in then move, get up and go somewhere else, keep yourself in places where you don't have to think so hard. I hope this helps, even a little. Michelle
  • scouty
    scouty Member Posts: 1,965
    Oh Christele,

    I can completely relate to your post. Back in October of 2004 when the chemo stopped working for me and I still had what my oncologist thought was 4 active tumors (surgery had never been an option for me), I had to make by far the most difficult decision I have ever had to make in my life; continue chemo when I felt like it was killing me and was no longer working or try a few alternative types of things.

    I chose to stop chemo and build up my body with the help of a naturopathic doctor and lots of dietary/lifestyle changes.

    BUT none of that kept the "bad thoughts" away. I've posted this before, but I so remember a night that I was really scared and was crying myself to sleep. In my mind, I had planned my will and was planning my funeral. I had it all figured out until it came to what I would wear in the casket. I decided on a really cute skirt outfit everyone always complimented me on (I had good looking legs back then). For a moment or two I laid there okay with it all and then all of a sudden I realized if I was to be buried in a skirt then that meant I would have to wear panty hose!!!!!

    There was no way I was going to "live for all eternity" in a pair of pantyhose and the next thing I know I am laughing and crying at the same time. I will never forget the feelings I had that night, such an eruption of so many emotions.

    It all has been a little easier and lighter to deal with since then. I think I require it to be.

    As you said, this is the place to talk about this kind of stuff.

    Hugs and keep me posted as you continue your journey. It really is an interesting peril at times.

    Lisa P.
  • jerseysue
    jerseysue Member Posts: 624
    I'm also a stage IV trying to beat the "odds" of this horrible disease. Yes I do think to myself I wonder if this is the time the chemo won't work. I've been fortunate that when the cancer comes back the chemo kicks it butt. I'm wishing that this time the cancer doesn't come back ever. I was dx in April 05 and it has come back 2 times. I'm working right now on my recurrence taking Xeloda 2 times a day and taking the weekends off. My CEA is going down and that is a GREAT thing. Your thoughts will wander but shake them off and keep on fighting.
  • Limey
    Limey Member Posts: 446
    Hi Christele, I can relate to your post big time. After 4 times going on Chemo I wonder will I beat it or will it beat me.
    Then I remember that I have already won the battle because made a choice to be a solider and fight.

    Getting cancer is not a choice, taking a stance to fight is your choice and I find that the empowerment in choosing to kick butt is huge infighting this disease.

    Today was an elcrapo day for me. My good friend called me and reminded me that if I limit my whine to less than 15 minutes per day, I get to have many hours of positive experiences for the rest of the day. I have a 20yr old beautiful daughter and two adopted younger boys. I used be angry that my partner convinced me to adopt when I was fighting this beast. I really did not want to get to know a child just to loose him.

    I have since realized what a difference I have been able to make in their lives and more important, what a difference they make in mine. Often, they have been my strength.

    Short or long our time may be Christele, KNOW you have already WON.
    Celebrate your victory today, and tomorrow, and the next day, and the next day, and.......
    Mark
  • robinvan
    robinvan Member Posts: 1,012
    Hi Christele,
    Like many of the others who have responded to your post I also have times when I wonder if I will make it. What helps me through these times is knowing people who have continued to survive in the face of tough odds (like many on this site). I'm in to this over 3 years now and have recently fought off a liver recurrence with the help of RFA. My "future horizon" is beginning to expand again. Last weekend I finally went on a shopping spree and bought new clothes!!
    There may come a day... but it is not this day!!
    Don't beat yourself up for having down days... but if you find yourself in the valley too long... find some help for getting out of it.
    Peace and Blessings... Rob; in Vancouver
  • crazylady
    crazylady Member Posts: 543
    Hi Christele,
    I can completely relate to how you are feeling. I was diagnosed in March 2004 and since then have had 3 surgeries and am now in my 4th round of chemo. The hardest thing for me with chemo is that the side effects have been debilitating and there is no guarantee that it will work, but I am still here, still able to enjoy my children and grandchildren. When I have negative thoughts I try to think of something positive to counteract them and of course there is always hope.
    Don't apologize for having negative thoughts. I think we all have them at some point. Take good care of yourself and try to do things that are fun and not cancer related. I have found that this really helps me.
    Take care,
    Jamie
  • christeleb
    christeleb Member Posts: 60
    To all!!

    This is the kick in the butt I so needed (and expected from you all as survivors). Thank you so much for all your posts they warmed up my heart.

    What would I do wihout you, I can't even imagine. I wish I could hug each one of you. In the meantime I'm sending a bunch of cyber hugs!!

    OK, here it goes: "today I got out of bed, spent time with my daughter and went to work, so today is a great day". This will be my motto going forward. just like Scarlett O'hara said in Gone with the wind "tomorrow is another day".

    Have a great day yourself.

    Christele
  • christeleb
    christeleb Member Posts: 60
    scouty said:

    Oh Christele,

    I can completely relate to your post. Back in October of 2004 when the chemo stopped working for me and I still had what my oncologist thought was 4 active tumors (surgery had never been an option for me), I had to make by far the most difficult decision I have ever had to make in my life; continue chemo when I felt like it was killing me and was no longer working or try a few alternative types of things.

    I chose to stop chemo and build up my body with the help of a naturopathic doctor and lots of dietary/lifestyle changes.

    BUT none of that kept the "bad thoughts" away. I've posted this before, but I so remember a night that I was really scared and was crying myself to sleep. In my mind, I had planned my will and was planning my funeral. I had it all figured out until it came to what I would wear in the casket. I decided on a really cute skirt outfit everyone always complimented me on (I had good looking legs back then). For a moment or two I laid there okay with it all and then all of a sudden I realized if I was to be buried in a skirt then that meant I would have to wear panty hose!!!!!

    There was no way I was going to "live for all eternity" in a pair of pantyhose and the next thing I know I am laughing and crying at the same time. I will never forget the feelings I had that night, such an eruption of so many emotions.

    It all has been a little easier and lighter to deal with since then. I think I require it to be.

    As you said, this is the place to talk about this kind of stuff.

    Hugs and keep me posted as you continue your journey. It really is an interesting peril at times.

    Lisa P.

    Lisa,

    Your story about the pantyhose is hilarious, I'm at work and I was laughing out loud. I'm sure my co workers thought I was crazy!!

    Thank you again,

    Christele
  • christeleb
    christeleb Member Posts: 60
    Limey said:

    Hi Christele, I can relate to your post big time. After 4 times going on Chemo I wonder will I beat it or will it beat me.
    Then I remember that I have already won the battle because made a choice to be a solider and fight.

    Getting cancer is not a choice, taking a stance to fight is your choice and I find that the empowerment in choosing to kick butt is huge infighting this disease.

    Today was an elcrapo day for me. My good friend called me and reminded me that if I limit my whine to less than 15 minutes per day, I get to have many hours of positive experiences for the rest of the day. I have a 20yr old beautiful daughter and two adopted younger boys. I used be angry that my partner convinced me to adopt when I was fighting this beast. I really did not want to get to know a child just to loose him.

    I have since realized what a difference I have been able to make in their lives and more important, what a difference they make in mine. Often, they have been my strength.

    Short or long our time may be Christele, KNOW you have already WON.
    Celebrate your victory today, and tomorrow, and the next day, and the next day, and.......
    Mark

    Mark,

    I can relate to you when you talk about your kids. At first, I felt sorry to have given birth to my daughter and then getting cancer. I felt sorry for her. But now she gives me strength especially the days I just don't want to move but she pulls on my hand so I can go play with her.

    I will do what you say and I will make everyday a victory day.

    Thank you,

    Christele
  • KathiM
    KathiM Member Posts: 8,028

    To all!!

    This is the kick in the butt I so needed (and expected from you all as survivors). Thank you so much for all your posts they warmed up my heart.

    What would I do wihout you, I can't even imagine. I wish I could hug each one of you. In the meantime I'm sending a bunch of cyber hugs!!

    OK, here it goes: "today I got out of bed, spent time with my daughter and went to work, so today is a great day". This will be my motto going forward. just like Scarlett O'hara said in Gone with the wind "tomorrow is another day".

    Have a great day yourself.

    Christele

    ...and find something to laugh about everyday. A funny movie, a funny joke, a crazy outfit you see someone wearing...

    And if THAT doesn't work, well, go find a bar to dance on....worked for me!!!!

    Hugs, Kathi
  • christeleb
    christeleb Member Posts: 60
    KathiM said:

    ...and find something to laugh about everyday. A funny movie, a funny joke, a crazy outfit you see someone wearing...

    And if THAT doesn't work, well, go find a bar to dance on....worked for me!!!!

    Hugs, Kathi

    yep, I saw the picture on the colonpalooza website...looks like you were having a great time!!!
  • mrsriderman
    mrsriderman Member Posts: 48
    hi chritine

    i was dx on june07 with stage 4 w/ mets in both lung and liver and a tumor on one limp node. even thogh my c.t. scan have reduced them . i too still worry. i think is normal. he is a lady on this site that gives me great hope.(apache4)
    look at her web page. i have no real thoghts of wisdom other than " life isnt about riding waiting for the storms too pass"- its about learning how to dance in the rain"( i stole that from this blog site-- i love it)

    you are in my prayers lisa r
  • hopefulone
    hopefulone Member Posts: 1,043
    Cristele, I'm so glad your back on the "up" days! It's normal to worry about the future, but don't let it prevent you from enjoying the present! Enjoy that baby of yours and I believe that you will someday be posting about her "terrible teens"! lol. God Bless and keep the faith.

    Diane
  • barbc
    barbc Member Posts: 12
    Thanks, Christele, for being so honest about your feelings in your post. And glad to hear you are doing better!
    I too have had a tough time staying positive, and all these great replies really helped me too! So thanks again for posting!

    Barb
  • jsaun74
    jsaun74 Member Posts: 4
    What made you get checked at such a young age. My dad was just dx in May with stage 3. When I went to my Dr. he is not concerned with us kids being checked before the age 40. I'm 32. & it scared the crap out of me. Did you have signs before hand that made you go to the Dr??
  • spongebob
    spongebob Member Posts: 2,565
    christele -

    I think by now you get the picture that everyone gets down from this disease. I know I sure did. I remember nights laying in bed wishing it would just take me away. And then I'd look at my kid's photos.

    It's normal to get depressed - and there are meds for that. There's no shame in taking them to get your brain chemistry back in whack. Talk to your doc.

    By the way, Scouty, panty hose or not, remember that the bottom half of a casket is closed and folks only see you from the waist up. I plan to be buried in my finest fanciest uniform (on top) and a pair of comfortable sweat pants down below!

    I do plan to wear shoes with good heat-resistant soles, you know... just in case...

    Be well and be happy, christele! Any day that you get vertical is a GOOD day!

    - SB