My Journey Through Anal Cancer (It's been a tight squeeze but it's opening up now.) ;) lol

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  • Ann_i_
    Ann_i_ Member Posts: 47
    Ann_i_ said:

    9/4/2011
    Replied to someone who offered links
    ----------------------------------------------

    It's actually called "Chemo brain". I have done a little research on it. (I needed to know if I could trust myself to still be thinking straight. I'm still raising kids and I needed to reassure myself I was still up to giving them *sound advice.) And it may or may not improve.

    *At least, ya know, my idea of sound.

    Thank you for the links. I will check them out tonight when I have a little privacy to pull up the windows for them.


    This one is the most frustrating for me (while speaking):

    Trouble remembering common words (unable to find the right words to finish a sentence)

    I don't have the problem when writing(at least, I haven't noticed it.) Just when speaking. (And I've tried to go back to what I use to do for my daughter when she had a lisp, with the idea of using other words or describing the word I mean, but I draw a complete blank and can't even do that most of the time.)

    -----------------------

    I try to take it all in stride. (I'm still here and I refuse to be limited or give up.) I figure, with practice I can either, one, overcome it, or two, learn to slow down and give my brain a chance to catch up with my mouth.(or vice versa which ever one is slowing me down and causing me to stumble.)

    The Cancer foundation offered to give/find me a cancer buddy. (Someone who has already gone through the whole process and has my type of cancer.) I didn't have them do it at the time because my cancer was complicated with the infections/abscess's and I worried that our treatments and symptoms wouldn't match. Which would have made me feel worse instead of better. And the thought of giving the Cancer foundation a list of things (colostomy, port, infection, anal cancer, female, my age range, chemo/radiation) by which to pair us up seemed a bit, well, anal of me.

    But I thought if we didn't have enough in common, the pairing would do me more harm then good. (Nothing like having someone tell you they never experienced that and you can't get a hold of your doctor for a weekend or holiday. Cause darn if it isn't those times things go wrong, or seem to go wrong.)

    I have an appointment on Wednesday with my Radiation doctor. I'll ask her about a general, local support group. (If there is one and how I can join it.)

    ----------------
    9/8/2011

    OK, even though I'm still lost on the 'trying to find THE humor in this', I do see the humor of some things.

    Like:

    Going to the radiation doctor today and finding out they wouldn't see me unless I paid them 50 dollars (cash or check) and since I hadn't known I was going to be charged for missing a previous appointment(I misplaced the card and honestly forgot about the appointment.) I did not have 50 dollars cash on me or the check book from the checking account that could have paid it. (And got a lecture from one of the doctors about finishing paperwork for charity care with the hospital. Which I should have finished and haven't, my fault there. But really, a lecture?)

    Had they told me when I rescheduled the appointment, I would have had the money on me. (Now they can't fit me in until the 27th.)

    OK, I just checked the registered letter(when I missed the appointment they sent me a registered letter telling me that I was being treated for a serious medical condition which requires close follow up. um..duh), and the only thing that could even be construed as being near what he told me is..."We will be happy to schedule a new appointment for you. If you cannot keep this appointment, please call and let us know at least 36 hours prior to that appointment so that we can give that time to another patient. If you fail to let us know, there will be a rescheduling fee."

    Anywho, (that wasn't the humorous part.)

    As I left the exam room, having been lectured there by the doctor who informed me he wouldn't be seeing me today.(kind of twilight zonish there) :)

    I walked up the hall and was going to go around the corner when the nurses aid (to the doctor I usually see and who was sitting across from her) stopped me by asking how 'my... thing' was working for me. (While saying 'my thing' she hesitated, trying to find the word to use for it and instead did an OBVIOUS hand gesture.) The doctor stared at her, me? I said (as once again freaking emotion washed through me and my eyes teared; seriously, can I talk about this in person without the emotion??) Not so good. (and explained a little about it)

    The doctor however is still staring at her and she says..."What? She knew what I meant!"

    By the way ^that^ is the humor part of the visit.

    Doc turns to me and asks me what size they gave me originally and then tells the nurses aid(the hand gesture women, who just happens to be the mother of one of my girl scouts who graduated a few years ago.) to go get me the smaller one. Then explains gentleness in using it, persistence and no force.

    Then tells me that maybe I should schedule a gynecological exam and let the doc push through it to start me off. (Um, wait, the same place where the doc did a high dive from the high platform? Um..nooo freaking way!!)

    Did I mention that this is pretty much a 'for life' thing I now have to do. (That is, once I actually succeed at doing it the first time.)

    So I am now in possession of a smaller dilator and heading for the doors beside an older woman (pure white hair, small in stature, a little bent over and using a cane to walk) and she says to me..."Good luck with that."

    I'm still emotional and gave her a questioning look to which she replies. "I had to do that -as she waves at the small box in my hand and she doesn't look like she was thrilled with it or that she had much success with it - she says.."my chemo doctor was *issed at my radiation doctors, he claimed they radiated me too much and caused the problem." (as she waves her hand from her chest to her hips)

    Oh, awesome. (I didn't say this to her it's just my ending thought for the day.)

    9/11/2011

    Grabbed a cup of coffee from Dunkin Donuts last night, hit a local park, and cried. Sheesh

    I miss my dad.

    It's been a crappy emotional weekend.

    I see another coffee run coming tonight. :(

    I try not to whine. (I really thought I nipped/squashed that part of my personality a few years back, apparently, it needs more work.)

    On the bright side.

    I had my hair highlighted for the first time in my life. (And I like it!! I'm back to the blonde I use to be. Or ya know, somewhat. I didn't color it all, just highlighted, but it brought the blond back out.)

    The small one was usable. (Didn't kill me, I'll see about working up to where I need/want to be.) If you see a post that says "Score", ya know, ignore it, I'll just be bragging.

    I'm getting my paperwork tackled.

    I'm hooked on McDonalds sweet ice tea, again! (Every fall I ween myself off it again. You'd think I'd just not go there, but, glutton for punishment I guess.)

    10/17/2011
    I guess I'm going to use this thread like a blog or a diary. I have good days and bad days, emotionally and physically.

    Some things make other things look worse or make the whole seem worse. Or make me look at the whole and wonder what the heck is going to happen in the future.

    Last week I started bleeding. (Dang leaky trash cans)

    While talking to a good friend, I admitted it. (I was going to pretty much ignore it and see if it continued.)

    She talked to me and we went through a list of my docs and who I trusted, and I wound up calling my chemo doc. I left a message for a nurse, nurse calls while I'm out, I come home, call the nurse back, she tells me the doc isn't in today and maybe I should call one of my other doctors. (I admit that the only doctor I currently trust is the one I called and that even if it isn't her area of expertise, I'd rather she be my 'go to doc'. She said she'd leave a message for the doctor. I gave her my cell number and told her I'd be doing some running around and it might be easier to contact me that way.)

    I went over my mom's to visit because I'd be picking up my daughter in under an hour. I'm barely there when my cell rings, it's the doc. She assures me it's serious and that I need to call the gastro doc and if I'm not comfortable with him or if he offers me no good advice or can't give me an answer, I'm to call her back and she has a doc on call she'll direct me to. And also if it gets worse, I'm to get my butt -lol- immediately to the hospital ER. I assure her I'll call the gastro doc, and she tells me her office will also be calling his office. (I figured when I got home I'd call him, which would be in about an hour and a half.)

    I hang up with her, my phone rings (seriously under three minutes later) it's the gastro doc's office, can I come in now? yeah, I make arrangements for my mom to get my daughter and her friend that I drove home and head over to his office. When his office is clear an hour later, he see's me. He brings out my chart, the one with the photographs of the Sigmoidoscopy (yeah, just what I wanted to see) and explains that bleeding is normal for me. The radiation damage is there and will be there. Do I want to do laser surgery? What? huh?

    He explains that he usually has patients come in every three to six months with my problem for the laser surgery to remove the problem area. He explains this is now a 'life time' problem for me and I should expect bleeding from time to time and if it gets bad he can do the laser surgery to help. (Oh, awesome.)

    And he suggested anal-ease (sounds like an awesome product huh) for the symptoms. (I bought Preparation H, close enough he had told me. Though I never used it. I deal.)

    Think (or don't, seriously, you shouldn't.) agitated open sore feeling. (Itching, burning, uncomfortable...pft)

    -----------------

    Anywho, I'm still dealing with all the side effects, symptoms which are now, I guess, quality of life issues (but hey, I have life so that's good)

    I'm still not addressing the inner walls shrinkage issue. (Yeah, I'm trying to figure out why this isn't a top priority with me. But it isn't.) It's just hard to think I need to get over a pain hurdle in an area that is suppose to be all about pleasure before pleasure will be there again. (At least, I hope it will, and I think that's the crux of my problem, I'm not sure it will.)

    I'm left thinking, after last week, if radiation damage in the exit area is going to be raw and sore and bleed, what the heck is going to happen in the other area with friction and use? (Naaaa, don't answer that one, or even let yourself think about it too long, the visual hurts.)

    And I'm wondering if the gastro doc will approve the colostomy reversal.(If the exit has open sores,what's the chances that having fecal matter there will be a good idea? Considering last time I wound up with abscesses and there wasn't even open sores then, that I know of.)

    I can't see me able to live the rest of my life with a colostomy bag. (It now has to be adhered to me by using surgical tape as the psoriasis has gotten so bad underneath it that it doesn't have any actual skin to attach to.)

    --------------
    I can't help being dragged mentally back to where I am every once in awhile. I use to think that when my kids got old enough there were things I would pick back up and do again. That when they each could drive themselves where and when they wanted and needed to go, that I could 'pick my life back up'. (and I don't mean to suggest that I don't or didn't have a life.) But some things were put on hold to raise my family the way I wanted to.

    But anywho, I always thought I'd love to go back to playing softball. And I didn't think being 47 would be too old to do that. (That's when my youngest will be driving herself, or around then.) I figured I'd join an adult league and play again. And I look at myself now and realize all those physical pursuits that I put off with the idea that I could pick them back up later in life, well, they just aren't going to happen now.

    I use to watch some of the reality shows (more just catch bits and pieces as my husband watched them) and think, "Hey, I could do that!" Maybe I could, maybe I couldn't, but mentally I had thought I was physical able to tackle most of the challenges they had to face. Not anymore. I look at them and realize where I am in life and it depresses me a bit.

    The arthritis has kicked in. (I had bad knees and a shoulder and an ankle) But the arthritis has intensified those, the nerve damage to my hips has not eased, if anything it's gotten a bit worse, not incredible worse, just enough to pretty much let me know it isn't going to reverse itself. (At least, that's my view at this point, who knows, maybe I'll get lucky.)

    -------
    I also can't help thinking that I use to believe in karma/what goes around comes around. (I won't bring up religion, I'm still grappling with myself.) But how the heck can I think about karma and the idea of people reap what they sow? What the heck did I do to deserve this? (So a life time of thinking the way I do is under question and I'm not sure what I actually think/believe anymore.) And I realize no body 'deserves' cancer. (So it isn't even a fair question to think in the sense of asking 'why me'.) Why me hasn't even been a question I think I've asked myself because it just leads to the question of why not me, or if not me who..and I wouldn't wish this on anyone else so I'll take what I have and do my best to work with it.

    Good thing I'm not raising kids anymore though(I am, but I mean it's a good thing they aren't younger.) I might actually think about raising them more about grabbing what they can while they can and the heck with the consequences.
    (But I haven't changed my parenting, that I know of. Because I'm still trying to figure out what I actually believe.)

    Sorry, guess the whiner came out tonight.

    I am grateful. I know it may not sound like it. But the massive pain is gone, and in all honesty the discomfort I feel now is livable and my quality of life really isn't that bad. (If I could just tackle the sex issue, this probably wouldn't even seem that bad as a whole.)

    ----------
    10/18/2011 (My peers on the site showed some concerns as well as support, and I replied with the below.)

    And I am grateful for my life.

    And there are quite a few things that I count my blessings on.

    That I am here. (When with my bullheadedness about doctors there's a pretty good chance that if a few people hadn't been getting on me about my health, I might not have had the nerve to tell the admitting doctor "Yes, I'll stay if you admit me.")

    That I have several really good friends that cared/care enough to ride my back until I do what I should.

    That I had/have enough friends to see me through any crisis. (No matter its duration, or what it involves.)

    That my family rose to the challenge and didn't give up on me. (And that my husband did the impossible and did dishes and laundry, something I would have sworn he didn't even know how to do.) And finding out afterwards that he had a few really scarey days/weeks when he truly thought I wasn't going to stick around to make the rest of his life miserable. (Like I could ever give that up?!) And I never got that impression from him while I was going through treatments. (It was only afterwards when a few people who he confided in didn't keep their mouths shut around me about it that I found out.)

    That my kids turned down events and friends to stay home, even if all they did was stay in their rooms. (I found this out afterwards.)

    That although my thighs burn, they continue to work and support me.

    That although I can't move my arms the way I use to, they can still hold, support, and hug a growing toddler.(even if they ache afterwards for a bit.)

    Though I now have arthritis, the knees were bad to begin with, and the ankle isn't un-supportive of my weight, it just dislikes being turned oddly. (And it hasn't affected my driving ability) the one shoulder would roll out of the joint anyway and having the other now do it, well, it's not like I don't have a clue how to fix it or deal with it.

    I can eat again.(Wow, this isn't as high on the list of grateful things as it should be. Seriously, foods important to me!)

    I can sit without massive pain. (Something I don't think I will ever take for granted again.) I may not plop down unthinking, but I no longer have to 'think' about sitting. (Or just opt to stand.)

    That I have one doctor that I truly trust and who isn't offended or irate that I've made her my go to doc, even if she isn't a general practitioner.

    That even if I'm having trouble sleeping at night, when I do finally fall asleep, I sleep well. (If not long.) I don't feel lacking in sleep.

    Oddly, I'm actually grateful for the colostomy bag. (The thought of going through what I did and being 'connected' through it all makes me shudder at the thought.) And having it (aside from the stupid Psoriasis and the allergy to adhesives) really isn't that bad. (My dad had once told me, way back when he had diverticulitis and a colostomy bag was on the table for him, that he would rather die than have one. My mom confirmed that he thought this when I was in the hospital and then came home with one.) Me? When the surgeon said he thought it was the best way to approach this, I never once questioned his advice, my dads words went through my mind, but I'm not him. And I wouldn't ever choose death when a choice for life was on the table for the picking.) And I wouldn't willingly stay in intense pain simply because some 'quality of life' might be sacrificed.

    That I've been able to pick my life back up, and almost get it back to normal. (Yeah, I still won't carry laundry up or down the basement steps, and yeah, I still need to get on my family about doing that for me. But heck, I can carry my own stuff down there and wash it and they can all go naked if that's the way they prefer it.) ;)

    The chemo brain. It could be worse, much worse. Yeah, I've embarrassed myself and wanted to apologize for not thinking something through more before opening my mouth. (But mostly I think that's my own perspective of the events, I might come off a bit blonder than I am at times) I'm hoping I'll see that in myself as I go forward and be able to correct it before I embarrass myself and if not, I can live with embarrassment. (I just hope I don't embarrass my kids too much. And if I do, well, ya know, they could use a bit of down to earth reality from time to time anyway.) lol

    I'm relearning to form mental associations so that I don't forget things that are short term related. And I'm not embarrassed to tell people that 'No, I can't give you an answer right this very second, you need to give me a few minutes to fully think it through before I'll give you an answer. And no, I don't think as quickly on some things as I use to." or maybe again, it's my perspective, that I don't trust myself to know all the things that are going to be affected by my answer so I try to take a few extra minutes to try to calendar-ize my days and think through commitments and obligations before adding a new one. (Thinking I'll miss something and have two things that need to be done at the same time and not that I can't multi-task, I can, but nobody can be at two different places at the same time.)

    But, anywho, I just wanted to assure you all, I am grateful and I do count my many blessings in life. (And I'm sure there are more that I'm forgetting to state at the moment. Like my love for reading being still high on my list of loved things to do and that it's kept me sane at times.)

    I wallow in self pity every once in awhile. Mostly when those around me tend to take me for granted or don't realize I'm still dealing with a lot of stuff and they act like everything is normal and fine and to me, it still isn't. But then again, it's a pretty good thing if those closest to me aren't realizing what I'm still going through. (Then I'm doing a pretty good job of picking life back up and moving forward.) :)
  • Ann_i_
    Ann_i_ Member Posts: 47
    Ann_i_ said:

    10/17/2011
    I guess I'm going to use this thread like a blog or a diary. I have good days and bad days, emotionally and physically.

    Some things make other things look worse or make the whole seem worse. Or make me look at the whole and wonder what the heck is going to happen in the future.

    Last week I started bleeding. (Dang leaky trash cans)

    While talking to a good friend, I admitted it. (I was going to pretty much ignore it and see if it continued.)

    She talked to me and we went through a list of my docs and who I trusted, and I wound up calling my chemo doc. I left a message for a nurse, nurse calls while I'm out, I come home, call the nurse back, she tells me the doc isn't in today and maybe I should call one of my other doctors. (I admit that the only doctor I currently trust is the one I called and that even if it isn't her area of expertise, I'd rather she be my 'go to doc'. She said she'd leave a message for the doctor. I gave her my cell number and told her I'd be doing some running around and it might be easier to contact me that way.)

    I went over my mom's to visit because I'd be picking up my daughter in under an hour. I'm barely there when my cell rings, it's the doc. She assures me it's serious and that I need to call the gastro doc and if I'm not comfortable with him or if he offers me no good advice or can't give me an answer, I'm to call her back and she has a doc on call she'll direct me to. And also if it gets worse, I'm to get my butt -lol- immediately to the hospital ER. I assure her I'll call the gastro doc, and she tells me her office will also be calling his office. (I figured when I got home I'd call him, which would be in about an hour and a half.)

    I hang up with her, my phone rings (seriously under three minutes later) it's the gastro doc's office, can I come in now? yeah, I make arrangements for my mom to get my daughter and her friend that I drove home and head over to his office. When his office is clear an hour later, he see's me. He brings out my chart, the one with the photographs of the Sigmoidoscopy (yeah, just what I wanted to see) and explains that bleeding is normal for me. The radiation damage is there and will be there. Do I want to do laser surgery? What? huh?

    He explains that he usually has patients come in every three to six months with my problem for the laser surgery to remove the problem area. He explains this is now a 'life time' problem for me and I should expect bleeding from time to time and if it gets bad he can do the laser surgery to help. (Oh, awesome.)

    And he suggested anal-ease (sounds like an awesome product huh) for the symptoms. (I bought Preparation H, close enough he had told me. Though I never used it. I deal.)

    Think (or don't, seriously, you shouldn't.) agitated open sore feeling. (Itching, burning, uncomfortable...pft)

    -----------------

    Anywho, I'm still dealing with all the side effects, symptoms which are now, I guess, quality of life issues (but hey, I have life so that's good)

    I'm still not addressing the inner walls shrinkage issue. (Yeah, I'm trying to figure out why this isn't a top priority with me. But it isn't.) It's just hard to think I need to get over a pain hurdle in an area that is suppose to be all about pleasure before pleasure will be there again. (At least, I hope it will, and I think that's the crux of my problem, I'm not sure it will.)

    I'm left thinking, after last week, if radiation damage in the exit area is going to be raw and sore and bleed, what the heck is going to happen in the other area with friction and use? (Naaaa, don't answer that one, or even let yourself think about it too long, the visual hurts.)

    And I'm wondering if the gastro doc will approve the colostomy reversal.(If the exit has open sores,what's the chances that having fecal matter there will be a good idea? Considering last time I wound up with abscesses and there wasn't even open sores then, that I know of.)

    I can't see me able to live the rest of my life with a colostomy bag. (It now has to be adhered to me by using surgical tape as the psoriasis has gotten so bad underneath it that it doesn't have any actual skin to attach to.)

    --------------
    I can't help being dragged mentally back to where I am every once in awhile. I use to think that when my kids got old enough there were things I would pick back up and do again. That when they each could drive themselves where and when they wanted and needed to go, that I could 'pick my life back up'. (and I don't mean to suggest that I don't or didn't have a life.) But some things were put on hold to raise my family the way I wanted to.

    But anywho, I always thought I'd love to go back to playing softball. And I didn't think being 47 would be too old to do that. (That's when my youngest will be driving herself, or around then.) I figured I'd join an adult league and play again. And I look at myself now and realize all those physical pursuits that I put off with the idea that I could pick them back up later in life, well, they just aren't going to happen now.

    I use to watch some of the reality shows (more just catch bits and pieces as my husband watched them) and think, "Hey, I could do that!" Maybe I could, maybe I couldn't, but mentally I had thought I was physical able to tackle most of the challenges they had to face. Not anymore. I look at them and realize where I am in life and it depresses me a bit.

    The arthritis has kicked in. (I had bad knees and a shoulder and an ankle) But the arthritis has intensified those, the nerve damage to my hips has not eased, if anything it's gotten a bit worse, not incredible worse, just enough to pretty much let me know it isn't going to reverse itself. (At least, that's my view at this point, who knows, maybe I'll get lucky.)

    -------
    I also can't help thinking that I use to believe in karma/what goes around comes around. (I won't bring up religion, I'm still grappling with myself.) But how the heck can I think about karma and the idea of people reap what they sow? What the heck did I do to deserve this? (So a life time of thinking the way I do is under question and I'm not sure what I actually think/believe anymore.) And I realize no body 'deserves' cancer. (So it isn't even a fair question to think in the sense of asking 'why me'.) Why me hasn't even been a question I think I've asked myself because it just leads to the question of why not me, or if not me who..and I wouldn't wish this on anyone else so I'll take what I have and do my best to work with it.

    Good thing I'm not raising kids anymore though(I am, but I mean it's a good thing they aren't younger.) I might actually think about raising them more about grabbing what they can while they can and the heck with the consequences.
    (But I haven't changed my parenting, that I know of. Because I'm still trying to figure out what I actually believe.)

    Sorry, guess the whiner came out tonight.

    I am grateful. I know it may not sound like it. But the massive pain is gone, and in all honesty the discomfort I feel now is livable and my quality of life really isn't that bad. (If I could just tackle the sex issue, this probably wouldn't even seem that bad as a whole.)

    ----------
    10/18/2011 (My peers on the site showed some concerns as well as support, and I replied with the below.)

    And I am grateful for my life.

    And there are quite a few things that I count my blessings on.

    That I am here. (When with my bullheadedness about doctors there's a pretty good chance that if a few people hadn't been getting on me about my health, I might not have had the nerve to tell the admitting doctor "Yes, I'll stay if you admit me.")

    That I have several really good friends that cared/care enough to ride my back until I do what I should.

    That I had/have enough friends to see me through any crisis. (No matter its duration, or what it involves.)

    That my family rose to the challenge and didn't give up on me. (And that my husband did the impossible and did dishes and laundry, something I would have sworn he didn't even know how to do.) And finding out afterwards that he had a few really scarey days/weeks when he truly thought I wasn't going to stick around to make the rest of his life miserable. (Like I could ever give that up?!) And I never got that impression from him while I was going through treatments. (It was only afterwards when a few people who he confided in didn't keep their mouths shut around me about it that I found out.)

    That my kids turned down events and friends to stay home, even if all they did was stay in their rooms. (I found this out afterwards.)

    That although my thighs burn, they continue to work and support me.

    That although I can't move my arms the way I use to, they can still hold, support, and hug a growing toddler.(even if they ache afterwards for a bit.)

    Though I now have arthritis, the knees were bad to begin with, and the ankle isn't un-supportive of my weight, it just dislikes being turned oddly. (And it hasn't affected my driving ability) the one shoulder would roll out of the joint anyway and having the other now do it, well, it's not like I don't have a clue how to fix it or deal with it.

    I can eat again.(Wow, this isn't as high on the list of grateful things as it should be. Seriously, foods important to me!)

    I can sit without massive pain. (Something I don't think I will ever take for granted again.) I may not plop down unthinking, but I no longer have to 'think' about sitting. (Or just opt to stand.)

    That I have one doctor that I truly trust and who isn't offended or irate that I've made her my go to doc, even if she isn't a general practitioner.

    That even if I'm having trouble sleeping at night, when I do finally fall asleep, I sleep well. (If not long.) I don't feel lacking in sleep.

    Oddly, I'm actually grateful for the colostomy bag. (The thought of going through what I did and being 'connected' through it all makes me shudder at the thought.) And having it (aside from the stupid Psoriasis and the allergy to adhesives) really isn't that bad. (My dad had once told me, way back when he had diverticulitis and a colostomy bag was on the table for him, that he would rather die than have one. My mom confirmed that he thought this when I was in the hospital and then came home with one.) Me? When the surgeon said he thought it was the best way to approach this, I never once questioned his advice, my dads words went through my mind, but I'm not him. And I wouldn't ever choose death when a choice for life was on the table for the picking.) And I wouldn't willingly stay in intense pain simply because some 'quality of life' might be sacrificed.

    That I've been able to pick my life back up, and almost get it back to normal. (Yeah, I still won't carry laundry up or down the basement steps, and yeah, I still need to get on my family about doing that for me. But heck, I can carry my own stuff down there and wash it and they can all go naked if that's the way they prefer it.) ;)

    The chemo brain. It could be worse, much worse. Yeah, I've embarrassed myself and wanted to apologize for not thinking something through more before opening my mouth. (But mostly I think that's my own perspective of the events, I might come off a bit blonder than I am at times) I'm hoping I'll see that in myself as I go forward and be able to correct it before I embarrass myself and if not, I can live with embarrassment. (I just hope I don't embarrass my kids too much. And if I do, well, ya know, they could use a bit of down to earth reality from time to time anyway.) lol

    I'm relearning to form mental associations so that I don't forget things that are short term related. And I'm not embarrassed to tell people that 'No, I can't give you an answer right this very second, you need to give me a few minutes to fully think it through before I'll give you an answer. And no, I don't think as quickly on some things as I use to." or maybe again, it's my perspective, that I don't trust myself to know all the things that are going to be affected by my answer so I try to take a few extra minutes to try to calendar-ize my days and think through commitments and obligations before adding a new one. (Thinking I'll miss something and have two things that need to be done at the same time and not that I can't multi-task, I can, but nobody can be at two different places at the same time.)

    But, anywho, I just wanted to assure you all, I am grateful and I do count my many blessings in life. (And I'm sure there are more that I'm forgetting to state at the moment. Like my love for reading being still high on my list of loved things to do and that it's kept me sane at times.)

    I wallow in self pity every once in awhile. Mostly when those around me tend to take me for granted or don't realize I'm still dealing with a lot of stuff and they act like everything is normal and fine and to me, it still isn't. But then again, it's a pretty good thing if those closest to me aren't realizing what I'm still going through. (Then I'm doing a pretty good job of picking life back up and moving forward.) :)

    Up to date
    That brings us up to date with my travels so far.

    Although I did contact the "Hope" network and they hooked me up to talk to a woman who had gone through something similar and she gave me a great lead about the dilator. (I'll be looking into that tonight.)

    And hearing that a lot I've been through, so had she eased my mind a bit.

    I have the next doc appointment November 9th. (To set up for another sigmoidoscopy-spell check-)

    ---------
    I'm sorry if the last couple seemed more like downers, learning to cope with things that seemed out of my control got me frustrated, until I realized I may not be able to control some of it, but I can still control how I react to it. (Which gives me control back.) :)
  • Ann_i_
    Ann_i_ Member Posts: 47
    Ann_i_ said:

    Up to date
    That brings us up to date with my travels so far.

    Although I did contact the "Hope" network and they hooked me up to talk to a woman who had gone through something similar and she gave me a great lead about the dilator. (I'll be looking into that tonight.)

    And hearing that a lot I've been through, so had she eased my mind a bit.

    I have the next doc appointment November 9th. (To set up for another sigmoidoscopy-spell check-)

    ---------
    I'm sorry if the last couple seemed more like downers, learning to cope with things that seemed out of my control got me frustrated, until I realized I may not be able to control some of it, but I can still control how I react to it. (Which gives me control back.) :)

    Humor Moments
    On the humorous side, I kept embarrassing my poor daughter.

    As I went back out in public after my treatments ended (I had gone out a bit during treatments, but not a whole lot. At one point I had been under the impression that the chemo made me dangerous to the young and the old, so I thought I was performing a public service. Late when I asked for clarification because I had/have a very very young great niece who I really wanted to spend time with, I was informed that I was fine to be around her. So long as she hadn't recently received certain shots and as long as she didn't come in contact with my body fluids.) Knowledge helps.

    Any way, as I was getting back out in public, I seemed to be running into people I hadn't seen in years.

    Oh course one of the first things they would mention is, "Wow, you look great! You've lost a lot of weight!" (and of course, one of my first thoughts was, 'I do?', I mean, I wasn't in top form, my energy level just spiked above zero, I thought I looked pale and sickly, apparently I was not seeing myself clearly. lol) and much to the embarrassment of my daughter I never failed to reply with, "Yeah, cancer will do that to a person."

    My daughter told me after the first time I said it and the person had suddenly looked uncomfortable that, "Mom, can you maybe phrase that different or just say Thank you?!" I told her, "I'd feel guilty thinking they thought I actually lost the weight from conscious effort when it had not been my intention to lose it."

    She said..'oh'
    Me: Yeah, it's not the greatest diet plan in the world, but shoot, it needed to have some side benefits, and for me, that's one I'm counting on the plus side.

    Another: When I first went for treatments my chemo doc (she's my go to doc, I love her to pieces, seriously, she's so awesome. Rocky start maybe, but she's worth her weight in gold. Or maybe she's worth the weight I lost in gold, cause she's a small woman.) :D

    Any way, she told me that due to the chemo and where the radiation would be aimed, that I would lose hair. And that certain hair would probably never return. (Pelvic)

    So when talking to friends I informed them that never again would I need to worry about bikini waxes or shaving a sensitive region. Gotta look at the positives and for me, this was/is one of them. (Again, that's another for the Plus side.)
    (Now if only the chin hair had been part of it! Can't have everything I suppose.) ;)
    Oddly, thinking on it, I think I lost all body hair, minus facial hair and head, though they thinned out a bit.

    oh and an embarrassing moment for me:

    My mom's dog had puppies, when they were old enough to find homes, one of my son's assistant managers said he would like one for his mom. So we gathered the dog up and took him to his new home to introduce him and get him situated there. While trying to get him to go to the gentleman's mom, the dog tried to burrow up my shoulder, claws digging into my shirt. I was so worried about the dog adjusting and taking to her I didn't pay attention to what the dog was using for 'purchase'. I finally handed the woman the dog and as I turned, my colostomy bag fell out of my shirt and unto the floor.

    My son's assistant manager (the gentleman that he is) reached down before I could and picked it up and handed it to me. (Talk about mortified.) I turned, pulled my shirt up slightly (after checking it was clean around the edges) and popped it back on. (Once home I changed it out and cleaned the wafer portion.) But talk about embarrassed. lol

    Thank goodness I can't stand to leave anything in it and had thoroughly cleaned it prior to picking up the puppy. (Now, THAT would really have been embarrassing!) lol
  • mp327
    mp327 Member Posts: 4,440 Member
    RoseC said:

    Welcome Kim
    Hi Kim - thanks for sharing your story. Waiting to hear more. Your sense of humor is just fine!

    Ann_i_
    I just wanted to thank you for posting your journal entries here for all of us to read. I enjoyed your sense of humor and I think you put everything in perspective. At the "end" (sorry!), we're all still here, living our lives normally for the most part. I wish you well and hope you'll continue to come here with updates.
  • sandysp
    sandysp Member Posts: 868 Member
    mp327 said:

    Ann_i_
    I just wanted to thank you for posting your journal entries here for all of us to read. I enjoyed your sense of humor and I think you put everything in perspective. At the "end" (sorry!), we're all still here, living our lives normally for the most part. I wish you well and hope you'll continue to come here with updates.

    Wow!
    You gave us what I asked for. What a journey you have had. I found it amazing that you stuck to the physical problems and left what can only be left to the imagination, how hard it must have been for you to cope with all this without insurance. As if cancer isn't stressful enough and you have young kids! Thank you so much for taking time to share your journey with us. And stay with us, please. All the best and God Bless! Sandy
  • Ann_i_
    Ann_i_ Member Posts: 47
    sandysp said:

    Wow!
    You gave us what I asked for. What a journey you have had. I found it amazing that you stuck to the physical problems and left what can only be left to the imagination, how hard it must have been for you to cope with all this without insurance. As if cancer isn't stressful enough and you have young kids! Thank you so much for taking time to share your journey with us. And stay with us, please. All the best and God Bless! Sandy

    Emotional end
    Thank you all for your welcome and your words of support. They are much appreciated.

    As I was going through treatments and with filling in people with the updates to my condition, one thing I kept trying to remember was that the physical things were what I needed to concentrate on. They were things to overcome. They were tangible things that could be seen as goals.

    The emotional issues that came, well, those were mine. I owned them and nothing anyone could say would relieve me of what I was feeling. (Though, I honestly thought I hadn't done a great job of hiding them completely.)

    I know the saying, "A burden shared, is a burden halved." But to me, the emotional burden I carried, it just didn't sit well with me to share it.

    The emotional journey of Cancer is in and of itself a whole different journey than the physical journey. And I believe, it really is one we each have to take on our own. It's personal and it's not something anybody else can fix or heal. It's something we need to take one day at a time and find our own way to heal.

    Although, for me, I've never been one to find sharing my emotions easy. I'm a mom, I'm suppose to be the strong one. (Emotionally and physically) Being anything less, drives me nuts.

    Though if pushed, and I dump, shoot, watch out because you'll get it all. (I so hate when this happens.) Hmm thinking about it though, (laughing, seriously) I didn't dump the emotional stuff, I dumped the physical stuff. (I cried though, and that helped relieve some of the emotional turmoil.) I don't think I know 'how' to share my emotional struggles. (Except through venting the physical struggles.)
  • sistermoon
    sistermoon Member Posts: 12
    Ann_i_ said:

    Emotional end
    Thank you all for your welcome and your words of support. They are much appreciated.

    As I was going through treatments and with filling in people with the updates to my condition, one thing I kept trying to remember was that the physical things were what I needed to concentrate on. They were things to overcome. They were tangible things that could be seen as goals.

    The emotional issues that came, well, those were mine. I owned them and nothing anyone could say would relieve me of what I was feeling. (Though, I honestly thought I hadn't done a great job of hiding them completely.)

    I know the saying, "A burden shared, is a burden halved." But to me, the emotional burden I carried, it just didn't sit well with me to share it.

    The emotional journey of Cancer is in and of itself a whole different journey than the physical journey. And I believe, it really is one we each have to take on our own. It's personal and it's not something anybody else can fix or heal. It's something we need to take one day at a time and find our own way to heal.

    Although, for me, I've never been one to find sharing my emotions easy. I'm a mom, I'm suppose to be the strong one. (Emotionally and physically) Being anything less, drives me nuts.

    Though if pushed, and I dump, shoot, watch out because you'll get it all. (I so hate when this happens.) Hmm thinking about it though, (laughing, seriously) I didn't dump the emotional stuff, I dumped the physical stuff. (I cried though, and that helped relieve some of the emotional turmoil.) I don't think I know 'how' to share my emotional struggles. (Except through venting the physical struggles.)

    OMG!!!
    Ann _i_, I'm wiping away tears (of sadness, laughter and joy)as I type. You're initial experience mirrored mine completely - especially the "elimination difficulties". I had so many similar reactions.

    My journey is just beginning, and people like you give me the strength to keep going,keep my head up and believe this will have a happy ending. I truly appreciate your stepping out of your comfort zone to share your story.
  • Ann_i_
    Ann_i_ Member Posts: 47
    Ann_i_ said:

    Emotional end
    Thank you all for your welcome and your words of support. They are much appreciated.

    As I was going through treatments and with filling in people with the updates to my condition, one thing I kept trying to remember was that the physical things were what I needed to concentrate on. They were things to overcome. They were tangible things that could be seen as goals.

    The emotional issues that came, well, those were mine. I owned them and nothing anyone could say would relieve me of what I was feeling. (Though, I honestly thought I hadn't done a great job of hiding them completely.)

    I know the saying, "A burden shared, is a burden halved." But to me, the emotional burden I carried, it just didn't sit well with me to share it.

    The emotional journey of Cancer is in and of itself a whole different journey than the physical journey. And I believe, it really is one we each have to take on our own. It's personal and it's not something anybody else can fix or heal. It's something we need to take one day at a time and find our own way to heal.

    Although, for me, I've never been one to find sharing my emotions easy. I'm a mom, I'm suppose to be the strong one. (Emotionally and physically) Being anything less, drives me nuts.

    Though if pushed, and I dump, shoot, watch out because you'll get it all. (I so hate when this happens.) Hmm thinking about it though, (laughing, seriously) I didn't dump the emotional stuff, I dumped the physical stuff. (I cried though, and that helped relieve some of the emotional turmoil.) I don't think I know 'how' to share my emotional struggles. (Except through venting the physical struggles.)

    Update
    Sorry, I know it's been awhile since I posted. I got a bit frustrated and I think I was dealing with depression (and maybe thinking of hosting a pity party for myself.)

    I got the stomach bug that was going around just before the holidays (Dec 2011) and lost 20 lbs and a visit to the E.R. to fill my fluids back up. (This 4 days after my chemo doc told me I should maybe try to lose a bit of weight or at the least maintain. I'm pretty sure she hadn't meant my body to take it so literally. lol )

    Easier said then done (exercise that is) with a port in my left shoulder and a herniated colostomy and the chemo/muscle damage to my upper thighs and upper arms. (When I asked what I could or couldn't do to achieve this she suggested running, I looked at her and reminded her of the herniated colostomy and that I have two iffy knees - I didn't run prior to cancer, why would I run now? lol she suggested walking. Yeah, I take one turn around wal-mart and look for a place to sit.)

    I was so frustrated to feel horrible through the 'food' holidays. (I mean, c'mon, it's food, I am SO into food. Not feeling well enough to eat like I wanted to stunk!!)

    But a good thing came out of it, it pushed my pain up a notch and made me go back to my gastro doc and ask for help with the pain. He put me on a pain medication and the first full day I was on it my daughter told me, "welcome back mom", I was confused (this was in February, two months short of a year out of treatment. I thought I'd been handing everything very well. Nope.

    Apparently I wasn't quite as 'engaged' in the world around me as I thought I was. I was living in a mental fog just getting by and just trying to get through another day. The pain meds helped me clear the pain and think (somewhat) clearly for the first time in over a year. (Those family members closest to me all commented about having me back and looking so much better.) I still find it odd that nobody told me the fog I was living in and how I was reacting to the world around me at that time. (I think they thought there was no way to help so they kind of ignored it and thought it was my 'new normal'.) :(

    Then a bad reaction to the pain meds and when I went for my flexible sig - after a night of pacing the floor trying to mentally get a grip on the pain since I stopped taking the pain pills and now had absolutely no tolerance for the pain I was in - I told the doctor the problem (and the nurse and tech prior to the flex sig and they put a pain med in the IV, I have never felt so relieved in my life as when that pain med kicked in) but anyway the doc put me on a lower pain medication. (Ultram) and I take that twice a day. (He also told me part of the problem is I have diversion colitis since my colon isn't happy I'm not using it. I'm wondering who told it that IT had a say in the first place? ;) )

    My flex sig results came back, I'm still cancer free at this time. (No evidence of disease.) My gastro doc wants to wait at least another year for a possible colostomy reversal. (He told me if I went through it he didn't think I'd have any control of my bowels at this point in time.) He said, 'The cancer didn't kill you but the treatments almost did.' So nice of him. The radiation damage is excessive at this point. (He's a bit surprised that it is what it is after almost a year after treatments have ended.)

    My chemo doc was next on the list to visit, (and I got a gyn referral from her due to a blood showing vaginal after the flex sig and the gastro doc thinking I had a fistula in the vaginal area.)

    And my radiation doc did a thyroid ultrasound. (I now need to go in for a needle insertion to check out something that showed up on the pet scan in JUNE. Not sure why she waited.)

    I've had a pelvic ultrasound and a vaginal ultrasound, both came back normal. A mammogram that also came back normal(for me.)

    The gyn is going to put me under and take a closer look at what is going on inside to see if she can't find out about the bleeding. (I have a bloody showing about every two weeks, which so far has been four times since that first one after the flex sig.) The gyn said she doesn't see a fistula (during the office exam and not in the ultrasounds) so she doesn't think there is one, but the bleeding needs to be further checked.

    I've applied for social security disability (no results on that yet.) I did get some of the bills taken care of by qualifying for charity care with the hospital. (Took two visits with the financial department of the hospital since the social worker in the cancer pavilion dropped the ball and left it all hanging.)

    I saw my surgeon (since my chemo doc wants the port out and I finally got it flushed for the first time since treatment ended.) and he said he can do that. (I just need to come up with half his bill prior to the surgery.) I asked him about the hernia and if fixing it was still on the table for when the colostomy would be reversed, he said, "What hernia?" (Gotta love that they read the patient files before coming into the room to see you!!) I lifted my shirt to show him, he starts to me and then see's it and what comes out of his mouth?..."Oh, oh my..." sheesh, thanks doc for making me feel better! grrrrr

    He checked it and yeah it's still on for when the colostomy gets reversed, although I may address it sooner as it does stick out and make the colostomy more prominent.

    On the brighter side, I saw a new program that is being advertised as I went through the rounds of doctors, a new supervised exercise program for cancer patients. (It was a study that was being done for patients who were within three months of finishing treatments to being up their stamina and energy.) I asked about it and my radiation doctor recommended it and contacted the program and there is a 'doctor referred supervised exercise program' in place for patients at the fitness center across from the hospital.

    I got a call from the program and they sent the paperwork to my doctor who filled it in and I joined the program. I joined April 18th (and it runs for 2 months) I've gone 3 times so far and I can already see the improvements. I started with no resistance on the band machines and am slowly adding some. (Not much, it hasn't been long, but I did add some this last time.)

    I can not believe how much it hurt to start, dang muscles really aren't use to being used. I'm not pushing too hard, just starting out and building up a little bit but it feels great to be actively trying to regain my strength and stamina. (It has been frustrating not being able - or feeling like I wasn't able - to do anything.) I don't work the trunk muscles specifically (I don't target them) but I do use a cardiovascular machine and am working on my legs. Trying to help alleviate the muscle burn/pain in the upper thighs, lower hips from the chemo.)

    It feels great though to be doing something to help myself.

    As for the vaginal walls narrowing and shortening, the gyn said there's more room in there then I think and that I should be able to return to intimacy with my husband, but after the vaginal ultrasound, I'm scared to even try. (That hurt going in and coming out.) I know I should be tackling this but to be honest, I'm still so disgusted with it and what needs to be done (not turned off by the tools of the trade per say,- lol - this isn't about the physical, it's all about the emotional) I'm finding it hard to prioritize.

    One step at a time I figure. Right now I'm working on stamina/strength/energy. (I'll tackle the other, I know I will. I hate feeling less than I should so I'm sure I won't let it go untackled for much longer. I just need to deal with the emotional aspects and catalog it and file it and then say 'the heck with that stuff' and just do what I do best, set a goal and treat it as a physical thing to fix and just ...do it!)
  • eihtak
    eihtak Member Posts: 1,473 Member
    Ann_i_ said:

    Update
    Sorry, I know it's been awhile since I posted. I got a bit frustrated and I think I was dealing with depression (and maybe thinking of hosting a pity party for myself.)

    I got the stomach bug that was going around just before the holidays (Dec 2011) and lost 20 lbs and a visit to the E.R. to fill my fluids back up. (This 4 days after my chemo doc told me I should maybe try to lose a bit of weight or at the least maintain. I'm pretty sure she hadn't meant my body to take it so literally. lol )

    Easier said then done (exercise that is) with a port in my left shoulder and a herniated colostomy and the chemo/muscle damage to my upper thighs and upper arms. (When I asked what I could or couldn't do to achieve this she suggested running, I looked at her and reminded her of the herniated colostomy and that I have two iffy knees - I didn't run prior to cancer, why would I run now? lol she suggested walking. Yeah, I take one turn around wal-mart and look for a place to sit.)

    I was so frustrated to feel horrible through the 'food' holidays. (I mean, c'mon, it's food, I am SO into food. Not feeling well enough to eat like I wanted to stunk!!)

    But a good thing came out of it, it pushed my pain up a notch and made me go back to my gastro doc and ask for help with the pain. He put me on a pain medication and the first full day I was on it my daughter told me, "welcome back mom", I was confused (this was in February, two months short of a year out of treatment. I thought I'd been handing everything very well. Nope.

    Apparently I wasn't quite as 'engaged' in the world around me as I thought I was. I was living in a mental fog just getting by and just trying to get through another day. The pain meds helped me clear the pain and think (somewhat) clearly for the first time in over a year. (Those family members closest to me all commented about having me back and looking so much better.) I still find it odd that nobody told me the fog I was living in and how I was reacting to the world around me at that time. (I think they thought there was no way to help so they kind of ignored it and thought it was my 'new normal'.) :(

    Then a bad reaction to the pain meds and when I went for my flexible sig - after a night of pacing the floor trying to mentally get a grip on the pain since I stopped taking the pain pills and now had absolutely no tolerance for the pain I was in - I told the doctor the problem (and the nurse and tech prior to the flex sig and they put a pain med in the IV, I have never felt so relieved in my life as when that pain med kicked in) but anyway the doc put me on a lower pain medication. (Ultram) and I take that twice a day. (He also told me part of the problem is I have diversion colitis since my colon isn't happy I'm not using it. I'm wondering who told it that IT had a say in the first place? ;) )

    My flex sig results came back, I'm still cancer free at this time. (No evidence of disease.) My gastro doc wants to wait at least another year for a possible colostomy reversal. (He told me if I went through it he didn't think I'd have any control of my bowels at this point in time.) He said, 'The cancer didn't kill you but the treatments almost did.' So nice of him. The radiation damage is excessive at this point. (He's a bit surprised that it is what it is after almost a year after treatments have ended.)

    My chemo doc was next on the list to visit, (and I got a gyn referral from her due to a blood showing vaginal after the flex sig and the gastro doc thinking I had a fistula in the vaginal area.)

    And my radiation doc did a thyroid ultrasound. (I now need to go in for a needle insertion to check out something that showed up on the pet scan in JUNE. Not sure why she waited.)

    I've had a pelvic ultrasound and a vaginal ultrasound, both came back normal. A mammogram that also came back normal(for me.)

    The gyn is going to put me under and take a closer look at what is going on inside to see if she can't find out about the bleeding. (I have a bloody showing about every two weeks, which so far has been four times since that first one after the flex sig.) The gyn said she doesn't see a fistula (during the office exam and not in the ultrasounds) so she doesn't think there is one, but the bleeding needs to be further checked.

    I've applied for social security disability (no results on that yet.) I did get some of the bills taken care of by qualifying for charity care with the hospital. (Took two visits with the financial department of the hospital since the social worker in the cancer pavilion dropped the ball and left it all hanging.)

    I saw my surgeon (since my chemo doc wants the port out and I finally got it flushed for the first time since treatment ended.) and he said he can do that. (I just need to come up with half his bill prior to the surgery.) I asked him about the hernia and if fixing it was still on the table for when the colostomy would be reversed, he said, "What hernia?" (Gotta love that they read the patient files before coming into the room to see you!!) I lifted my shirt to show him, he starts to me and then see's it and what comes out of his mouth?..."Oh, oh my..." sheesh, thanks doc for making me feel better! grrrrr

    He checked it and yeah it's still on for when the colostomy gets reversed, although I may address it sooner as it does stick out and make the colostomy more prominent.

    On the brighter side, I saw a new program that is being advertised as I went through the rounds of doctors, a new supervised exercise program for cancer patients. (It was a study that was being done for patients who were within three months of finishing treatments to being up their stamina and energy.) I asked about it and my radiation doctor recommended it and contacted the program and there is a 'doctor referred supervised exercise program' in place for patients at the fitness center across from the hospital.

    I got a call from the program and they sent the paperwork to my doctor who filled it in and I joined the program. I joined April 18th (and it runs for 2 months) I've gone 3 times so far and I can already see the improvements. I started with no resistance on the band machines and am slowly adding some. (Not much, it hasn't been long, but I did add some this last time.)

    I can not believe how much it hurt to start, dang muscles really aren't use to being used. I'm not pushing too hard, just starting out and building up a little bit but it feels great to be actively trying to regain my strength and stamina. (It has been frustrating not being able - or feeling like I wasn't able - to do anything.) I don't work the trunk muscles specifically (I don't target them) but I do use a cardiovascular machine and am working on my legs. Trying to help alleviate the muscle burn/pain in the upper thighs, lower hips from the chemo.)

    It feels great though to be doing something to help myself.

    As for the vaginal walls narrowing and shortening, the gyn said there's more room in there then I think and that I should be able to return to intimacy with my husband, but after the vaginal ultrasound, I'm scared to even try. (That hurt going in and coming out.) I know I should be tackling this but to be honest, I'm still so disgusted with it and what needs to be done (not turned off by the tools of the trade per say,- lol - this isn't about the physical, it's all about the emotional) I'm finding it hard to prioritize.

    One step at a time I figure. Right now I'm working on stamina/strength/energy. (I'll tackle the other, I know I will. I hate feeling less than I should so I'm sure I won't let it go untackled for much longer. I just need to deal with the emotional aspects and catalog it and file it and then say 'the heck with that stuff' and just do what I do best, set a goal and treat it as a physical thing to fix and just ...do it!)

    Thanks
    Thanks for sharing your story, my situation is similar in many ways. I am about 1yr post treatment for Stage3 Anal cancer and still have a colostomy that was supposed to be reversed over 6months ago. My doc feels that the radiation and extreme amount of scar tissue has caused me to loose almost all control, I am waiting for tests from my Gastroenterologist. Truthfully, I am kind of ok with it anyhow. If I watch what and when I eat I am able to go about 6hrs with only a large bandage over the stoma. It took some time to learn how to make this work, but is possible. There is a great site ( C3life ) for people with ostomies, and I have sent for several free samples from different manufacturers which may come in handy for you. My last PET was in Feb. of 2012 and I was NED but unfortunately diagnosed with Breast Cancer. Last month I had a double mastectomy, and so again trying to get energy levels back to normal, but otherwise alive and well! Please continue to post, especially if colostomy issues as the majority of people here have not gone that route. ( it usually just depends on exact size and placement of the tumor along with docs preferance ) As far as vaginal issues due to pelvic radiation I try to get the info out to all newly diagnosed...it is often overlooked by docs and is shocking news after the fact. This is a great place full of people with great advice to be shared. As always, all in my prayers.