Living with the side effects

tiny one
tiny one Member Posts: 465 Member
edited March 2014 in Colorectal Cancer #1
Does anyone else feel angry. I'm angry at the side effects that radiation left me. I have physical problems which make sex painful. My scars are a daily reminder of this journey that I've been on the last two years. The pain I have sometimes on a daily basis from bathroom issues from my reversal, sometimes is very hard for me to deal with. My fear is what if this is for the rest of my life? Yes I'm cancer free, I am alive. I've gotten treatment for depression and I attend cancer groups. I am enraged and feel violated from this. Any body else feel this way? Would having my scars erased would give peace?

Comments

  • ldot123
    ldot123 Member Posts: 272
    #2
    Pain is a drag
    Hi there,

    I hear your pain. I know it sometimes takes a long time to recover from surgery and treatment. I have had two cancers over twenty years with surgery, chemo and radiation. (no radiation for the colon cancer) All of that abuse to cause havoc to the body. In both instances it took me a lonnngggg time to start feeling reasonably normal. Have you spoken to your doctors about these issues. I imagine you have. What has been their response. I just started getting into an excercise program which is helping me a lot during my recovery.

    All the best to you, Lance
  • kmygil
    kmygil Member Posts: 876 Member
    #3
    Oh yes
    Hi. I think some of the effects that linger or stay with us can abate with exercise, diet etc etc. Scar tissue is another story. Sometimes the scar tissue on the inside can make life very difficult, and perhaps you should have it checked to see if they are actionable. The outside scarring also eases up--apply lotion daily etc etc.

    Other issues, like the bathroom issues, really are difficult. Sometimes I sneeze and, uh oh. I keep extra underwear at work just in case, and I've started sleeping with 'Depends". Life sure isn't what it used to be, but just carry on the best you can. Love yourself!

    Kirsten
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #4
    yep
    I feel like my life has been turned upside down.......and it has.....I have a sack hanging from my stomach and as I said before "How sexy can that be"...My tail still is a little sore from operation but even with all the pains and aches I have/had I have always seemed to come up with a solution to solve it. It may be kicking a trash can across the yard. (great therapy I might add) to just saying to myself this is a couple of years of my entire life that I will focus on something other than my normal lifestyle.....So.......as much as I like sex it has been put on kind of a back burner (not completely but you get the drift)...My pursuits are my God and my Family and how best I can serve both.....It allows me to concentrate on something that will overpower any type of pain you have. It will also make the longevity of pain seem short lived and because of the involvement of both God and Family I don't feel much pain at all anymore, also I hardly ever dwell on it. Cancer has re focused my life and yes to a better path. You simply just have to assure that nothing physically is wrong and then accept what it sends you and use it to whatever advantage it can give you. Normally what doesn't kill us makes us stronger.......Your NED....but after NED comes a sense of being left alone to deal with it all when before all we had to do is call and they were right there taking care of all of our problems , hurts , and pains. They have done their jobs, your cancer free. Try to see if going back to the radiation dept where you had that done and just to visit and see if that doesn't help the pains go away. It makes you feel that you are still their patient and for some unknown reason eases all pain. Most pain will subside and become scar tissue after a length of time, we all want it tomorrow because we feel like we have been through hell and back (which we have) and feel that we deserve to feel great. Well, we should, but the body has been through a major ordeal and brought you and I through it completely. Let it heal, and don't be frustrated yet, it has served you well, give it a vacation well deserved..............God Bless ya......sounds like He did..
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    I'm 4 years post-dx....
    With time, comes acceptance. Not that I don't live a good life, it's just different than before the beast challenged me. I sometimes get frustrated, but usually it has to do with someone else being an idiot...

    I have made changes in my daily diet, slowly finding the way to days free of 'emergency' bathroom runs and, well keeping healthy. Yes, I said healthy. After radiation and chemotherapy, I had my total rectum removed, and a 'new' rectum made from descending colon. After healing from my 12-inch incision, I returned to the hospital to have a lumpectomy for stage II breast cancer. 2 weeks later, back to the hospital for 4 days of lovely NPO with a gastric tube from a total bowel obstruction of my small bowel (I always thought, yeah, the small bowel was feeling left out, so IT needed to chime in...lol!). Then on to radiation and chemo for the breast cancer.

    My feeling is that I am luckier than some, not as lucky as others. I still can't lift without thinking about my 'special' arm, or eat cheese without feeling like I am sinning (which, BTW, I enjoy alot). Life is to be lived, and I want to take every experience. Bowel cancer seems to be one of the longest to recover from, so my best advice is to be patient. Don't forget, many people who have never had colon cancer have serious bathroom issues, too.

    Hugs, Kathi
  • mox2
    mox2 Member Posts: 2
    #6
    side effects
    I am a 2 time cancer survivor who feels very lucky to be alive, but the side effects can be debilitating at times. It has been 7 years since my reversal and there are days that are unbearable. I have been to specialists and there is really nothing that they can do for me because of the radiation and the part of the rectum that they had to take out. I have found that the chewable immodium is a little bit better. I can't eat any fruits, vegetables or anything spicy at all. Sometimes taking a 1/2 immodium helps. I have also found for me peanut butter crackers help when I am having a bad day.
  • MoonDragon
    MoonDragon Member Posts: 183
    #7
    Anger not so much, discouraged, yes....
    I too have had problems since radiation. Sex is painful and I bleed every time from tearing open the fragile skin in that area. My husband and I have just had to find better positions. I vowed that I was not going to loose my sex life and actually got into trouble from my doctor for having sex too soon but it's been a challenge to keep it going. My husband is very, very understanding, thankfully as for the first times since we've been married have I ever said "no". Just saying "no" to me makes me feel like a failure at times and like I"m letting my husband down. The things that keep me going are when I open my bedroom door and see my children and I'm reminded that no matter how painful it is, I'm still around to see their faces and enjoy my life with them. I don't know that it will ever get better but I'm going to keep working on it.

    Even more frustrating to me than my sex life is my bathroom life. I seriously feel like I spend 3/4 of my life in the bathroom. I have a "potty bag" that I carry with me everywhere. I carry a roll of my own favorite toilet paper, disposable wet-wipes, peptobismal which is the only thing that works for me, rash cream and a sukoku puzzle book with pencils and erasers. I am in the bathroom for sometimes up to an hour at a time. The puzzles take my mind completely off my discomfort. I've had to let my boss know and I look for public bathrooms that have more than 1 stall so that I don't have people standing outside the door banging on it while I'm dealing with horrific cramping. It's just the way it is. There have been days when I have just sat on the potty and cried. I look back though and I used to have to wear depends everywhere. I had accidents 2 or 3 times a day. I used to not be able to have sex at first because I was afriad I would poop in the bed...how sexy! lol

    Look back at how far you've come from where you started after the surgery and radiation and take hope. It may not be where you'd like to be, but it's a far cry from where you used to be. Love yourself and cut yourself some extra slack. I found that pampering myself with smell-goods, bubble baths, soft slippers, and cozy wraps helped me to feel better about myself when I found loving myself pretty hard to do. I also lit candles for myself. I lit 3, one to represent my precancerous times, one to represent my time of illness and one to represent the future me. I used tealights and lit them every time I felt discouraged. The flames helped me to keep going.

    Keep hanging in there and don't feel guilty about feeling angry. I think it's part of the emotional purging process. There is a mourning process for death and in a way we go through the same process as we are mourning the death of our prior bodies. Anger is part of the mourning process with death and would be a logical emotion for this as well. Just keep loving yourself!

    Hugs!

    Jorie
  • Unknown
    Unknown
    #8
    MoonDragon said:

    Anger not so much, discouraged, yes....
    I too have had problems since radiation. Sex is painful and I bleed every time from tearing open the fragile skin in that area. My husband and I have just had to find better positions. I vowed that I was not going to loose my sex life and actually got into trouble from my doctor for having sex too soon but it's been a challenge to keep it going. My husband is very, very understanding, thankfully as for the first times since we've been married have I ever said "no". Just saying "no" to me makes me feel like a failure at times and like I"m letting my husband down. The things that keep me going are when I open my bedroom door and see my children and I'm reminded that no matter how painful it is, I'm still around to see their faces and enjoy my life with them. I don't know that it will ever get better but I'm going to keep working on it.

    Even more frustrating to me than my sex life is my bathroom life. I seriously feel like I spend 3/4 of my life in the bathroom. I have a "potty bag" that I carry with me everywhere. I carry a roll of my own favorite toilet paper, disposable wet-wipes, peptobismal which is the only thing that works for me, rash cream and a sukoku puzzle book with pencils and erasers. I am in the bathroom for sometimes up to an hour at a time. The puzzles take my mind completely off my discomfort. I've had to let my boss know and I look for public bathrooms that have more than 1 stall so that I don't have people standing outside the door banging on it while I'm dealing with horrific cramping. It's just the way it is. There have been days when I have just sat on the potty and cried. I look back though and I used to have to wear depends everywhere. I had accidents 2 or 3 times a day. I used to not be able to have sex at first because I was afriad I would poop in the bed...how sexy! lol

    Look back at how far you've come from where you started after the surgery and radiation and take hope. It may not be where you'd like to be, but it's a far cry from where you used to be. Love yourself and cut yourself some extra slack. I found that pampering myself with smell-goods, bubble baths, soft slippers, and cozy wraps helped me to feel better about myself when I found loving myself pretty hard to do. I also lit candles for myself. I lit 3, one to represent my precancerous times, one to represent my time of illness and one to represent the future me. I used tealights and lit them every time I felt discouraged. The flames helped me to keep going.

    Keep hanging in there and don't feel guilty about feeling angry. I think it's part of the emotional purging process. There is a mourning process for death and in a way we go through the same process as we are mourning the death of our prior bodies. Anger is part of the mourning process with death and would be a logical emotion for this as well. Just keep loving yourself!

    Hugs!

    Jorie

    This comment has been removed by the Moderator
  • VickiCO
    VickiCO Member Posts: 917
    #9
    MoonDragon said:

    Anger not so much, discouraged, yes....
    I too have had problems since radiation. Sex is painful and I bleed every time from tearing open the fragile skin in that area. My husband and I have just had to find better positions. I vowed that I was not going to loose my sex life and actually got into trouble from my doctor for having sex too soon but it's been a challenge to keep it going. My husband is very, very understanding, thankfully as for the first times since we've been married have I ever said "no". Just saying "no" to me makes me feel like a failure at times and like I"m letting my husband down. The things that keep me going are when I open my bedroom door and see my children and I'm reminded that no matter how painful it is, I'm still around to see their faces and enjoy my life with them. I don't know that it will ever get better but I'm going to keep working on it.

    Even more frustrating to me than my sex life is my bathroom life. I seriously feel like I spend 3/4 of my life in the bathroom. I have a "potty bag" that I carry with me everywhere. I carry a roll of my own favorite toilet paper, disposable wet-wipes, peptobismal which is the only thing that works for me, rash cream and a sukoku puzzle book with pencils and erasers. I am in the bathroom for sometimes up to an hour at a time. The puzzles take my mind completely off my discomfort. I've had to let my boss know and I look for public bathrooms that have more than 1 stall so that I don't have people standing outside the door banging on it while I'm dealing with horrific cramping. It's just the way it is. There have been days when I have just sat on the potty and cried. I look back though and I used to have to wear depends everywhere. I had accidents 2 or 3 times a day. I used to not be able to have sex at first because I was afriad I would poop in the bed...how sexy! lol

    Look back at how far you've come from where you started after the surgery and radiation and take hope. It may not be where you'd like to be, but it's a far cry from where you used to be. Love yourself and cut yourself some extra slack. I found that pampering myself with smell-goods, bubble baths, soft slippers, and cozy wraps helped me to feel better about myself when I found loving myself pretty hard to do. I also lit candles for myself. I lit 3, one to represent my precancerous times, one to represent my time of illness and one to represent the future me. I used tealights and lit them every time I felt discouraged. The flames helped me to keep going.

    Keep hanging in there and don't feel guilty about feeling angry. I think it's part of the emotional purging process. There is a mourning process for death and in a way we go through the same process as we are mourning the death of our prior bodies. Anger is part of the mourning process with death and would be a logical emotion for this as well. Just keep loving yourself!

    Hugs!

    Jorie

    For me it's towels
    I looked in the linen closet the other day and said "Hey...I have cancer and I need new, fluffy, absorbent, large towels." Hubby said, "OK." I am now on the prowl for the perfect towels...

    Whatever it takes to make you feel better, do it. You have earned the right.

    Vicki
  • MoonDragon
    MoonDragon Member Posts: 183
    #10
    unknown said:

    This comment has been removed by the Moderator

    Oooh those sheets sound
    Oooh those sheets sound yummy, I'll have to go and "sneak a feel" LOL!!
  • Unknown
    Unknown
    #11
    MoonDragon said:

    Oooh those sheets sound
    Oooh those sheets sound yummy, I'll have to go and "sneak a feel" LOL!!

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #12
    VickiCO said:

    For me it's towels
    I looked in the linen closet the other day and said "Hey...I have cancer and I need new, fluffy, absorbent, large towels." Hubby said, "OK." I am now on the prowl for the perfect towels...

    Whatever it takes to make you feel better, do it. You have earned the right.

    Vicki

    This comment has been removed by the Moderator
  • daydreamer110761
    daydreamer110761 Member Posts: 487 Member
    #13
    unknown said:

    This comment has been removed by the Moderator

    That's too funny
    I did the same thing - I figured since it's too cold downstairs no matter what we do to make it warmer and I would be spending the better part of December through May up here in the bedroom - I went out and bought 500 count percale sheets - what a treat! We also moved the better tv and dvr up here, and bought a mini fridge. It stinks to have a whole house that I don't live in, but I can make the bedroom feel better!

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