After Cancer.... Now What?

just4Brooks
just4Brooks Member Posts: 980
edited March 2014 in Colorectal Cancer #1
I know that we mostly post about our fight during our cancer treatment but I dont see a lot of postings about the fight we go through after we won the war. So far so good on my bone scan, CT scans, Colonoscopy, and blood work. Dont get me wrong, I thank god every day that my cancer is gone but I still have so many issues.
Fatigue
Memory and concentration changes
Pain
Nervous system changes (neuropathy)
Mouth or teeth problems
Changes in weight and eating habits
Bladder or bowel control problems
bowel problems

It just seems to be a everyday fight. Does anyone else have any after cancer issues?
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Comments

  • just4Brooks
    just4Brooks Member Posts: 980
    and
    then at times I will get a hot flash and sweat like a pig!! LOL
  • pepebcn
    pepebcn Member Posts: 6,331
    Brooks
    all these issues ( that l had too) , are all of them real? can some of them be part of our post traumatic syndrome ? now l realize that in my case some
    of them they where!
    Hope it help you!
  • dorookie
    dorookie Member Posts: 1,731
    Very good question
    I was asked the other day by someone who knew my story, if I was now living like I was dieing? I told her no, I just pretty much work. I was one of the unlucky ones I guess that didnt have that big revelation when I got DX'd. After fighting for over 2 yrs, I am left with alot of what you are describing: pain, big time Fatigue, neuropathy bad in my feet, horrible bowl problems, and yes it does seem like a fight everyday.

    My partner and I think others dont get it, they keep saying you have so much to be thankful for, and please dont get me wrong because I am very thankful that my cancer is gone and continue to pray it never comes back, but I have alot of hard days. I am able to work 50+ hours a week, but when I get home I am pretty much shot, I dont sleep well, and that just compounds things, by friday I am in bed within 20 minutes of getting home for the day.

    I dont seem to have any interest in doing anything, I think its mostly because I dont have the energy. But who knows, live just isnt the same anymore and I cant seem to put my finger on it to pin point it or fix it. Just drives me crazy, and believe me its a short drive for me.

    Thanks for this post, guess I needed to vent some. I hate complaining when so many are worse off than me. So thanks again Brooks for this post.

    HUGS
    Beth
  • pluckey
    pluckey Member Posts: 484

    and
    then at times I will get a hot flash and sweat like a pig!! LOL

    you too? Dang, I thought I
    you too? Dang, I thought I was going thru menopause..AGAIN. I mentioned it to my Gyne and she didn't make a correclation to chemo side affect....hmm
  • pluckey
    pluckey Member Posts: 484
    Brooks
    I'm struggling very

    Brooks
    I'm struggling very much with the "after cancer"

    Physically, very minor complaints - turning into a lardazz and my concentration issues and hot flashes.

    Mentally, a whole other story. I cry all the time. I am in a constant state of panic, mostly because of Money, bills, etc...that stress alone is sending me over the edge

    As a result, I feel guilty and horrible for not being all love and light and positive and perky for the miracle that i am. I feel like I'm letting down all the people that cared for me, prayed for me, cried for me, etc..by not being this saintly happy person.

    During some of the darkest times of my illness, I was overwhelmed by the love and goodness that carried me through it. I really felt I was in a state of Grace.

    Now, I feel like a bitchy middle-aged dump of a schlump who is now poor. I hate being like this.

    I so badly need to find my way and I don't know how to do it.

    I made an appointment at a local Cancer Support Center with a counselor....she mentioned that it's like we're experienceing Post Traumatic Distress Syndrome....

    Anyways, I hope you find your way too, Brooks. When you think of all of us who have fought/are fighting so hard, I feel like I owe it to all of you and those around me to live well and be a role model of After Cancer...KWIM?? (know what I mean?)

    Peggy
  • dorookie
    dorookie Member Posts: 1,731
    pluckey said:

    Brooks
    I'm struggling very

    Brooks
    I'm struggling very much with the "after cancer"

    Physically, very minor complaints - turning into a lardazz and my concentration issues and hot flashes.

    Mentally, a whole other story. I cry all the time. I am in a constant state of panic, mostly because of Money, bills, etc...that stress alone is sending me over the edge

    As a result, I feel guilty and horrible for not being all love and light and positive and perky for the miracle that i am. I feel like I'm letting down all the people that cared for me, prayed for me, cried for me, etc..by not being this saintly happy person.

    During some of the darkest times of my illness, I was overwhelmed by the love and goodness that carried me through it. I really felt I was in a state of Grace.

    Now, I feel like a bitchy middle-aged dump of a schlump who is now poor. I hate being like this.

    I so badly need to find my way and I don't know how to do it.

    I made an appointment at a local Cancer Support Center with a counselor....she mentioned that it's like we're experienceing Post Traumatic Distress Syndrome....

    Anyways, I hope you find your way too, Brooks. When you think of all of us who have fought/are fighting so hard, I feel like I owe it to all of you and those around me to live well and be a role model of After Cancer...KWIM?? (know what I mean?)

    Peggy

    Peggy
    Are you still going to this counselor? Is it helping do you think? And do you think its best to get a counselor that deals with cancer stuff?

    HUGS
    Beth
  • pluckey
    pluckey Member Posts: 484
    dorookie said:

    Peggy
    Are you still going to this counselor? Is it helping do you think? And do you think its best to get a counselor that deals with cancer stuff?

    HUGS
    Beth

    nope, haven't gone yet, made
    nope, haven't gone yet, made an appot last week. I think I have to change it already because I ahve to go to a funeral the same day about 3 hours from home. I better not let it slip.....
  • HollyID
    HollyID Member Posts: 946
    Brooks...
    It's obvious that cancer touches each one of us differently.

    It is a PTSD I think for all of us, but each of us have varying degrees.

    You're right though... even though the tumor and any signs of cancer itself is gone, it sure does leave residual problems, doesn't it?

    I am still fatigued. I find it hard to finish tasks. I have to take frequent breaks to finish stuff off.

    My memory, I'm finding is improving. Yay for that.

    I still have neuropathy. Something I suppose I'll have forever, and so be it.

    My teeth need work. Definitely. I can't afford it and I have no dental ins.

    My finances suck. It's to the point I can't even make my monthly payments on credit cards and medical bills. I'll be able to catch up since I've gone back to work, but being out of work for even 6 weeks has killed us. We have no savings, and that was blown last year when we found the cancer with surgery and time off then. We still our 401Ks and other retirement, so that's still a good thing. This I'm guessing is one of those big bumps in the road.

    I thought a month or so ago that my bowels had finally figured out how to work as a team with siggy (sigmoid) gone, but they again have proven me wrong. LOL

    I find I just laugh. If I didn't, I'd cry.

    Love and Hugs,

    Holly
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Yep..........
    Hot Flashes and instant sweats
    Tired most of the time(can take a 2-5 hr nap at any time)
    Not much short term memory but also no concentration issues
    Stiff, sore, and did I say stiff
    neuropathy lots of sand between my pads of my feet
    can't make any large scale money decisions -house,land,etc...
    hate asking someone to help me
    no bowel issues
    constant over the shoulder thoughts
    life is good right now but not knowing how long right now will last is a pisser
    One of my main concerns is that it doesn't bother me anymore if I were to die (I am not giving up, it just seems to be a mute point for me anymore..and I hope that is a plus for me because the fear is just not there.....
    intimacy is an issue
    I am alive and I fought like hell to be alive.....just really not sure how much I am gonna continue to do to prevent it from taking over....I am seriously thinking about quality of life issues....I am alive and the only reason now is for my family...I hate cancer, I hate chemo, and I hate to see families suffering because of it...sorry bout the vent...not done but I'll end for now.......Buzz
  • coolvdub
    coolvdub Member Posts: 408
    HollyID said:

    Brooks...
    It's obvious that cancer touches each one of us differently.

    It is a PTSD I think for all of us, but each of us have varying degrees.

    You're right though... even though the tumor and any signs of cancer itself is gone, it sure does leave residual problems, doesn't it?

    I am still fatigued. I find it hard to finish tasks. I have to take frequent breaks to finish stuff off.

    My memory, I'm finding is improving. Yay for that.

    I still have neuropathy. Something I suppose I'll have forever, and so be it.

    My teeth need work. Definitely. I can't afford it and I have no dental ins.

    My finances suck. It's to the point I can't even make my monthly payments on credit cards and medical bills. I'll be able to catch up since I've gone back to work, but being out of work for even 6 weeks has killed us. We have no savings, and that was blown last year when we found the cancer with surgery and time off then. We still our 401Ks and other retirement, so that's still a good thing. This I'm guessing is one of those big bumps in the road.

    I thought a month or so ago that my bowels had finally figured out how to work as a team with siggy (sigmoid) gone, but they again have proven me wrong. LOL

    I find I just laugh. If I didn't, I'd cry.

    Love and Hugs,

    Holly

    how timely
    Brooks,

    You are not alone on this one. I stayed home today because I just seem to be in a funk lately. I for the most part feel really well physically, considering all that I have been through the last year and four months. That being said, I am constantly tired, the neuropathy is a bear and this bag really bites. I have missed so much time from work it's not even funny, I know that it can't be helped, but it still bothers me. I have a lot to be thankful for, but I'm wrestling with what to do with the rest of my working life. I have a great job and pay, but I just don't feel fufilled by it. I want to make some sort of a difference in this world and leave it a better place, just not sure what direction to go with it. I feel guilty constantly for having it so good, while others are still fighting for their lives. I think I really need to go see a pyschiatrist or pyschologist to ge a handle on all this.

    Don
  • maglets
    maglets Member Posts: 2,576
    Buzzard said:

    Yep..........
    Hot Flashes and instant sweats
    Tired most of the time(can take a 2-5 hr nap at any time)
    Not much short term memory but also no concentration issues
    Stiff, sore, and did I say stiff
    neuropathy lots of sand between my pads of my feet
    can't make any large scale money decisions -house,land,etc...
    hate asking someone to help me
    no bowel issues
    constant over the shoulder thoughts
    life is good right now but not knowing how long right now will last is a pisser
    One of my main concerns is that it doesn't bother me anymore if I were to die (I am not giving up, it just seems to be a mute point for me anymore..and I hope that is a plus for me because the fear is just not there.....
    intimacy is an issue
    I am alive and I fought like hell to be alive.....just really not sure how much I am gonna continue to do to prevent it from taking over....I am seriously thinking about quality of life issues....I am alive and the only reason now is for my family...I hate cancer, I hate chemo, and I hate to see families suffering because of it...sorry bout the vent...not done but I'll end for now.......Buzz

    yes + 10
    I know I know....we are surviving....it is so lacking gratitude and grace to whine. It will be frightening for new members but some days (like today) I just despair) some days I think....why don't I just kill myself and get this damned thing over with. Sometimes I am so afraid and ashamed.....a crappy wife....so apparently self absorbed. sometimes i can bring the light to shine but sometimes as Buzz says the over the shoulder glance is sooo strong....where is the beast. I am tired, I hurt, I don't sleep////blah blah

    interesting topic...sometimes the fight is easier....now it's just like waiting for the axe to fall

    sorry.......end of rant

    maggie
  • lesvanb
    lesvanb Member Posts: 905
    maglets said:

    yes + 10
    I know I know....we are surviving....it is so lacking gratitude and grace to whine. It will be frightening for new members but some days (like today) I just despair) some days I think....why don't I just kill myself and get this damned thing over with. Sometimes I am so afraid and ashamed.....a crappy wife....so apparently self absorbed. sometimes i can bring the light to shine but sometimes as Buzz says the over the shoulder glance is sooo strong....where is the beast. I am tired, I hurt, I don't sleep////blah blah

    interesting topic...sometimes the fight is easier....now it's just like waiting for the axe to fall

    sorry.......end of rant

    maggie

    Maggie et al
    Boy have you hit the mail on the head for me Maggie...
    "it is so lacking gratitude and grace to whine....Sometimes I am so afraid and ashamed"

    This book has been extremely helpful, and just this morning I read the chapter on guilt and shame and I realized what was sending me into the long dark deep spiral today. The Language of Emotions: What Your Feelings Are Trying to Tell You, Karla McLaren.

    So I have been apologizing over and over, mostly to me today, and that action helps relieve the load. Incredibly quickly and lightly at times. I have had to apologize to others also when I feel I've done something wrong to them. I apologize today to me, and to my loved ones around me, who of course feel me, for feeling whiny, not grateful for what I have but sad for what I have lost, and for being afraid of what might come. I just send it out there, focus on my intent to do my best (and that's not perfection) and feel my integrity keeping me whole with my spine straight while sitting quietly.

    all the best, Leslie
  • pluckey
    pluckey Member Posts: 484
    maglets said:

    yes + 10
    I know I know....we are surviving....it is so lacking gratitude and grace to whine. It will be frightening for new members but some days (like today) I just despair) some days I think....why don't I just kill myself and get this damned thing over with. Sometimes I am so afraid and ashamed.....a crappy wife....so apparently self absorbed. sometimes i can bring the light to shine but sometimes as Buzz says the over the shoulder glance is sooo strong....where is the beast. I am tired, I hurt, I don't sleep////blah blah

    interesting topic...sometimes the fight is easier....now it's just like waiting for the axe to fall

    sorry.......end of rant

    maggie

    maggie, yes to this
    it is

    maggie, yes to this

    it is so lacking gratitude and grace to whine. It will be frightening for new members but some days (like today) I just despair) some days I think....why don't I just kill myself and get this damned thing over with. Sometimes I am so afraid and ashamed.....a crappy wife....so apparently self absorbed. sometimes i can bring the light to shine

    it's such an ugly cycle of feelings
  • dorookie
    dorookie Member Posts: 1,731
    maglets said:

    yes + 10
    I know I know....we are surviving....it is so lacking gratitude and grace to whine. It will be frightening for new members but some days (like today) I just despair) some days I think....why don't I just kill myself and get this damned thing over with. Sometimes I am so afraid and ashamed.....a crappy wife....so apparently self absorbed. sometimes i can bring the light to shine but sometimes as Buzz says the over the shoulder glance is sooo strong....where is the beast. I am tired, I hurt, I don't sleep////blah blah

    interesting topic...sometimes the fight is easier....now it's just like waiting for the axe to fall

    sorry.......end of rant

    maggie

    I second that
    what you say about waiting for the axe to fall is such an elephant on your back..and no one seems to understand, all they say is, well just live for now...well I say easier said than done...

    sorry venting again..

    Beth
  • Kerry S
    Kerry S Member Posts: 606
    You know, I started to write a reply to this post with the same tone you all have. Then I got mad at myself for the negative thinking and erased it. Please don’t take that statement in the wrong way. Venting is good. Just not for me today.

    Does this cancer crap suck. Hell yes! But today I got the tractor out of the barn. I took a dead 25 foot evergreen in the back yard and just pushed the damn thing over and up out of the ground. Then filled the tractor bucket with dirt and filled the hole where the tree was. Damn, big boy Tonka toys are fun.

    Maybe because I am already a mostly dead old guy, I just look at it different than you younger folks. From family history I should only make it to mid 70s anyway. Hell, with this crap I have been rode hard and put away wet. I’m sure it’s already taken a few years off my final score.

    I believe in an after life and I have gotten to the point that if I die from this crap I win.
    If I continue to do well with it and croak of something else I win. I also give myself the option to take myself out any time I want to. I have never even come close to the 3rd option. For me it is important that option is there. It makes me feel in control not the damn cancer. I have 17 years of retirement under my belt, so I figure I am ahead in the game of life.

    I do know that once I get reconnected, I am going to make every doc answer “whats it buy me and what is it going to cost me in money, time and pain” to every damn treatment they want to do to me. Yep, quality of life is going to be my main point of view.

    Kerry
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Hi Brooks,my husband's
    Hi Brooks,my husband's follow up came out good and the oncologist uses word of NED.My husband also has most of the problems you listed,but he is getting better by each passing day.I think your body does need time to recuperate from the nasty chemo.Just take your time and enjoy everyday,you will get there.Best wishes to you,take care.
  • christinecarl
    christinecarl Member Posts: 543
    I can relate
    I feel guilty if I have a moment where I hate my life or feel sorry for myself for any reason. Which I know is not right since beating cancer does not give you a free pass on those things, it should though LOL. I definitely felt a let down once chemo stopped, because at least when you are going through that, you are actively fighting cancer, you are doing something about it. I felt such fear when I stopped the chemo that it was the only thing stopping the cancer from taking over my body. Thankfully I was wrong about that part. I DO feel lucky most days. I remember when my mom was going through her colon cancer journey and feeling sad, she would always say "I just want my life back." Well I got my life back. But I definitely have my bad days. I hate that Live Like You Are Dying song, what a load of crap, who can live up to that every single day of their life?
  • dorookie
    dorookie Member Posts: 1,731

    I can relate
    I feel guilty if I have a moment where I hate my life or feel sorry for myself for any reason. Which I know is not right since beating cancer does not give you a free pass on those things, it should though LOL. I definitely felt a let down once chemo stopped, because at least when you are going through that, you are actively fighting cancer, you are doing something about it. I felt such fear when I stopped the chemo that it was the only thing stopping the cancer from taking over my body. Thankfully I was wrong about that part. I DO feel lucky most days. I remember when my mom was going through her colon cancer journey and feeling sad, she would always say "I just want my life back." Well I got my life back. But I definitely have my bad days. I hate that Live Like You Are Dying song, what a load of crap, who can live up to that every single day of their life?

    I hear ya
    I am so glad I am not the only one who is going through stuff like this. I was so feeling like I was crazy or something. I guess I have to figure out what my New Life is going to be like. Maybe I just need to stop feeling sorry for myself and get off my arzz and start living. Again easier said than done....


    HUGS
    Beth
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Yep!
    Yep! And I didn't even have to go through chemo. I have the usual stress from it, wondering if it'll come back, anxiety over scans and bloodwork (CEA coming up on Friday). I find myself being more reflective than before.

    I do feel like I have more compassion for others going through serious illness now, and I have a special mission to reach out to cancer patients.

    As for the physical, the poochy tummy could definitely go. I feel like my stomach muscles are gone. Cannot get that thing in shape! I also have the daily, persistent pain and periodic hospitializations for that and the partial blockages.

    All in all, I'm doing pretty well, but I've certainly been touched by the Beast, and it's a mark not easily removed.

    *hugs*
    Gail
  • just4Brooks
    just4Brooks Member Posts: 980
    By no means I'm I complaining
    Just wanted to know if I was the only one with what seems to be so many problems. Hell yes I'm happy to be alive to kick some more butt and help the others fight!! Need to spend a day with Kerry and knock something down or maybe drive over a car. Gotta love each and every one of you.

    Brooks