Another sleepless night

ittapp
ittapp Member Posts: 383 Member
edited March 2014 in Colorectal Cancer #1
Well, I lay here again at 3am with my mind racing.My Onc. told me not to long ago I would be on chemo forever well, I just started thinking how long can a person take chemo? I guess I have just ignored that answer. If I am not resectable and the sir spheres will just buy me time, what am I really facing? I know this all sounds depressing but it is what I lay here and ponder. Please don't get me wrong, I am a very positive person and I am told how strong and positive I am constantly but I just need to get it out. This board allows me to open up and express my inner feelings. (I hope it's ok)I guess with the holidays,so much going on in January I am more than a little blue. I just look for people on this board who are in simular situations but, it seems all the stage IV's that are long term surviving have had resect or RFA, pump etc. Non of which they are offering up to me.This cancer is just a beast and it seeps into your mind as well as your body.Oh well, tomorrow is another day and I will continue to fight and be positive, thanks for listening. I really needed to get it out! Maybe next time I should just write it on paper. LOL I want all of you to know how much this board and the friendships mean to me, this is another part of my life where people truly understand what I am going through (in the trenches)fighting this battle mentally and physically, and at the same time dealing with everyday life and all the people who can't possibly know what your dealing with. It is a new life for me and I guess I am still getting use to it. On another note the Ironotecan (sp) is thinning my hair so much that I am forced to get a wig now:another reason I am feeling down.My little girl keeps saying Mommy I don't want your hair to fall out, gut wrenching(If I hear oh well it's just hair it will grow back one more time I think I will lose it! If your on chemo forever it pretty much won't grow back. I will bounce back, just needed to spill my guts. Patti

Comments

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #2
    Dear Patti
    Dear Patti,
    I know you just wrote this a few minutes ago, I hope you have a chance to check back before going to sleep. I am praying for you right now and wish I was there to give you a hug. I have heard people say that they think about staying on chemo long enough for something else to be approved or discovered. So much is begin done to find a cure, I pray you can hold on to hope. You are a strong lady.
    Don't let the idiots get you down with the "It's only hair" thing. People really do say stupid things, they just don't think. I know at times it is people close to us that just let things fly out of their mouths. I just do my fake smile and move on (all the while thinking what a ________!)
    I hope you get to sleep soon.
    Wrapping you in aloha,
    Kathleen
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    Kathleen808 said:

    Dear Patti
    Dear Patti,
    I know you just wrote this a few minutes ago, I hope you have a chance to check back before going to sleep. I am praying for you right now and wish I was there to give you a hug. I have heard people say that they think about staying on chemo long enough for something else to be approved or discovered. So much is begin done to find a cure, I pray you can hold on to hope. You are a strong lady.
    Don't let the idiots get you down with the "It's only hair" thing. People really do say stupid things, they just don't think. I know at times it is people close to us that just let things fly out of their mouths. I just do my fake smile and move on (all the while thinking what a ________!)
    I hope you get to sleep soon.
    Wrapping you in aloha,
    Kathleen

    Same here.....
    I also understand what it feels like to have this hovering overhead all the time. It is gut wrenching. I think that everyone will sooner or later feel this way but for us it is the thought process that makes us think about what might could happen to us sooner than most have to worry about it. I would absolutely sob before I finally got hold of my inner self and demanded that I had to take control of my life and emotion back. You like all of us here no matter how big or strong we really think we are this humbles us. Its like a slap in the face to us. The only thing though that we can do is stay busy doing other things as we can, and learn to just know that we are doing all we can and take solace in that. Depression meds helped me get through the worst part of it and I am glad they were there. Im off of them now(for good) and OK with everything. I just try and get through each day and do as much as possible, to fill the whole day up, and surprisingly I am finding that I am actually doing the things that I always wanted to do but didn't.
    Patti, Its tough not to dwell on things you can't control. Just try and get as much rest as you can and it will make you feel better. and do this very thing as often as possible...come in here and let it go...its stress relief to get it out on paper or verbally...just know we love ya and you'll stay in our prayers.... nite nite sweetie, see ya tomorrow......Love and Hope, Clift
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #5
    We're here for you!!
    Hi Patti, Rough night? I have had many of them!! LOL. I woke up this morning in pain (My legs and hips) so I'm just waiting on the pain pills to kick in. Thank god we dont have to do this alone and we have eachother on the board. If it wasn't for all of you I know I wouldn't have made it through this. I just wanted to send you my love... Things have to get better, you'll see.

    Life is funny sometimes
    Brooks
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    KS :)
    Dearest Patti

    We've known each other for nearly 7 months now and I remember talking to you when we both just climbed on board the Semi train here...seems like yesterday and a lifetime ago, all in the same thoughts.

    Seeing you and many of my friends sick like this hurts me very badly - and it makes me feel so helpless when I can't help or even offer any encouragement or advice to help you. I just want to give you my NED and change places with you so you can all be well and go on with your lives - it's hard for me to enjoy being well when so many of you are hurting - it just is not the same as I thought it would be - perhaps if I did not have my heart invested with you guys, I could be Woohoo'ing, but I am invested and I'm the kind of person, "Who's in for a penny, in for a pound." Another words, I'm all in or all out - and with you and many others, well...you know where I stand.

    My heart is heavy this morning in writing you this post, but I still want to see where the Sir Spheres takes us - as long as there is any kind of chance, that is a CHANCE and we must embrace it and see what happens.

    You are so strong now and can tell that you need to unload your burdens and I'm so glad that we are all here for you to do so when you need it most.

    YOU will always have a special place in my heart and I just can't stop believing that somehow, someway, we can beat this thing out of your body and give you your life back - oh, what a happy day and post that will be - I'm gonna' believe it always and will never give up on you - whatever the odds are, I'm staying with Patti for a miracle finish!

    I love you, Patti! Say hello to that wonderful family of yours and thank you for posting and sharing your heart with all of us - you are special.

    And you are my Kindred Spirit - and always will be - never ever forget that :)

    KS2
    -Craig
  • jillpls
    jillpls Member Posts: 238
    #7
    I do understand and feel the same way
    Hi Patti,
    I've been here for over 3 years fighting so I understand the fright and sleepless nights. I hate it when I'm feeling bad and my kids see me that way. It really frightens them. I was told I'd be on chemo until I can't take it anymore. I've had 3 of this round and ended in the hospital for new years. I'm home now but in lots of pain. There are many times I'd like this to end very quickly but then I see my kids and my husband and I want to keep fighting. My best hope is in God. When the pain gets too bad I picture God putting his hands on me. My only advise is to be open with your kids. They will see and know when something isn't right so be as honest as you can...age adjusted of course. God does work miracles and whos to say He won't work one in us??? We have to continue to trust him. God bless you and your family
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
    I hear ya
    Patti,

    I get the hair thing.I'm thinking about cutting my hair short this week. I hate myself in short hair, but it's gotten so straggly and thin that it looks just like little stringy wisps hanging down on the sides. It's still quite thick in back, but thin on the sides with almost bald spots on my temples, so it does look kind of weird. It looks a lot different than my picture now. I still hate to cut it though- I've just been styling it to make it look thicker on the sides. So, I get what you're going through- it's tough.
    People just want to try to make you feel better & often say weird or insensitive things out of just not knowing what else to say. I'm sure you realize that, but I know it doesn't make it any easier to hear. What I hate the most is when I'm in a good mood and (especially at church) everyone comes up to me with this sad look on their face and ask me in this singsongy voice, "How arrrre you?" I guess it's better than just ignoring me, but many days talking about my cancer and treatments and "how I'm doing" is the last thing I want to be "forced" to have to talk about. I'm usually very open about it all, but it definitely gets old! Like someone else just said, you take the chemo until something better comes along.
    I am praying right now for your positive outlook to overtake you again. Even the most positive of positive people have their down moments- I've certainly had mine too. It's a new year and a new beginning- you'll be here on Earth as long as God wants you to be- not one day less!

    You take care and I'll be thinking of you.

    Hugs to you,
    Lisa

    I have been told the "chemo forever" thing too, but I'm now doing the treatment through Dr. Cantrell in Nashville. It's still a treatment, but since it isn't a chemo, I feel like my body is getting a break, which has been nice. It'd be even nicer still if I didn't have to take anything, of course, but c'est la vie! Maybe someday I'll get there!
  • Shayenne
    Shayenne Member Posts: 2,342
    #9
    lisa42 said:

    I hear ya
    Patti,

    I get the hair thing.I'm thinking about cutting my hair short this week. I hate myself in short hair, but it's gotten so straggly and thin that it looks just like little stringy wisps hanging down on the sides. It's still quite thick in back, but thin on the sides with almost bald spots on my temples, so it does look kind of weird. It looks a lot different than my picture now. I still hate to cut it though- I've just been styling it to make it look thicker on the sides. So, I get what you're going through- it's tough.
    People just want to try to make you feel better & often say weird or insensitive things out of just not knowing what else to say. I'm sure you realize that, but I know it doesn't make it any easier to hear. What I hate the most is when I'm in a good mood and (especially at church) everyone comes up to me with this sad look on their face and ask me in this singsongy voice, "How arrrre you?" I guess it's better than just ignoring me, but many days talking about my cancer and treatments and "how I'm doing" is the last thing I want to be "forced" to have to talk about. I'm usually very open about it all, but it definitely gets old! Like someone else just said, you take the chemo until something better comes along.
    I am praying right now for your positive outlook to overtake you again. Even the most positive of positive people have their down moments- I've certainly had mine too. It's a new year and a new beginning- you'll be here on Earth as long as God wants you to be- not one day less!

    You take care and I'll be thinking of you.

    Hugs to you,
    Lisa

    I have been told the "chemo forever" thing too, but I'm now doing the treatment through Dr. Cantrell in Nashville. It's still a treatment, but since it isn't a chemo, I feel like my body is getting a break, which has been nice. It'd be even nicer still if I didn't have to take anything, of course, but c'est la vie! Maybe someday I'll get there!

    Lisa, Jill, Kathy, Patti and ME!
    And Eric actually, I believe we are ALL in the same inoperable Stage 4 group, and Patti, we all get our down nights, I can toss and turn all night thinking, "wow! I'm so happy to hear alot of people being here NED, but I sure do get jealous of them as well"..honestly, I hate to say it, but I do get upset and jealous that I'm not there, and may never be there, and I hate myself for feeling like that sometimes, I shouldn't feel like that, it's terrible, but it's a dream of mine that I know may never happen, so all I can do is just stay hopeful, and keep on thinking, we never know, something MAY come along for us, there's that hope that I won't lose, that miracles have happened, and will continue to happen, we're on wait for a reason, maybe something better will come along soon, I am hopeful for ALL of us, with my prayers, and God, that something is in the making for us! So, when those bad thoughts start creeping along on you, just refocus on something else, like.. us waiting and seeing what the next big treatment will be, just wait it out, I know it's annoying to be on this chemo, but, it's saving our lives...and we're still here, so that's a good thing.

    I love you all, and Hope you have a better night, get some rest Patti, and don't let it control your life, just take charge and make sure you keep thinking, "this is not going to get me", don't let it!

    Hugsss!
    ~Donna
  • geotina
    geotina Member Posts: 2,111 Member
    #10
    Oh Patti
    I'm so sorry these thoughts are creeping into your mind. Although I am not the one with the cancer, George is I can relate to having dark thoughts.. I went through a few nights of thinking ok, it is in his liver and lungs and what is going to happen if chemo stops working and we run out of options and have no surgical options, radiation options, etc. Then for some reason I did a turnaround, don't know how or why, but I began a different thought process, I don't think about the cancer all the time, George is feeling great, eats more than he should, continues to work and most importantly is here today. Guess I was feeling sorry for myself and scared to be alone(our daughter is grown and lives out state)Geez, sorry, guess I am rambling. Anyway, with the holidays over, he blues sometimes take over. Just do the best you can, set your sights on the sirsphires doing their job and better, lighter days ahead. Don't let fear stop you from living. Thats all I got. Thinking of you - Tina
  • ittapp
    ittapp Member Posts: 383 Member
    #11
    Gosh, thanks to all of you,
    Gosh, thanks to all of you, I really wasn't expecting a response from anyone. I just was more than anything just opening my heart and letting it out! I tried to feel better today but I went into my bedroom where my husband was napping and just cried so hard in front of hime for the first time in a long time. He cried with me, we questioned why all of this is happening to two people who love each other so much. Neither one of us has parents they are all deceased, my parents by un natural causes so, I ask why again Lord. I know I am being tested and don't know why but none of us do. I am praying that the Sir Spheres works at shrinking tumors and perhaps moving on to even the RFA at least that is my prayer. Thanks to all of you, I love you all. Patti
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #12
    Praying for you
    Patti,

    I am fortunate enough not to be in the same situation as you are, so perhaps I shouldn't even attempt to post on this one. I just can't ignore it, though, because I feel so sorry that you're having such a rough time right now.

    I won't even begin to say I understand the depth of the feelings you're going through right now, but I just want to say that I'm praying for you and hope you will get some good sleep.

    *hugs*
    Gail

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