You would think I would learn

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Barb5454
Barb5454 Member Posts: 125

Hi Everyone,

 

I'm 2 years post treatment. Next month I get my CT scan to see if I'm still cancer free and I'm feeling pretty good about that. BUT I have wanted to go back to my life I had before cancer. What I mean by that is I can't drink alcohol at all now. I use to be a rum and coke person and everytime I have a drink I bleed, and then I get worried.  If I eat certain foods..I bleed and then I worry.. I have trouble having sex with my man and I'm taking meds and dialators for that. I've gained weight because I've been depressed.

I have fought for 2 years I had cancer and today I finally accepted I had cancer and I have to figure out a new normal. I also realize I need this site. I need all of you and be involved so I can help like you have helped me.

 

 

Comments

  • Lorikat
    Lorikat Member Posts: 681 Member
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    Post treatment

    Barb...  I think most of us could have written this post!  Especially about the bleeding.  If I lift heavy things (like moving furniture) or eat salads, or just because, I bleed.  Seeing the toilet which seems full of blood still scares me!  Some days my gut cramps all the way into my back!  

    I still "hit the wall" with fatigue in the afternoon.  I can no longer clean my home in one day.  I had to skip Christmas festivities in the snow with GKids this year because I might have to go to the bathroom....

    i keep telling myself I am 3 years past tx and NED.  And that is wonderful!  But am I leading the same full life as before? No.  I'm not..

    and sex? Hah!  Not happening.  but we WILL find how to live and enjoy our new lives!  

  • Barb5454
    Barb5454 Member Posts: 125
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    Lorikat said:

    Post treatment

    Barb...  I think most of us could have written this post!  Especially about the bleeding.  If I lift heavy things (like moving furniture) or eat salads, or just because, I bleed.  Seeing the toilet which seems full of blood still scares me!  Some days my gut cramps all the way into my back!  

    I still "hit the wall" with fatigue in the afternoon.  I can no longer clean my home in one day.  I had to skip Christmas festivities in the snow with GKids this year because I might have to go to the bathroom....

    i keep telling myself I am 3 years past tx and NED.  And that is wonderful!  But am I leading the same full life as before? No.  I'm not..

    and sex? Hah!  Not happening.  but we WILL find how to live and enjoy our new lives!  

    Lorikat

    Thank you so much for replying and I'm so sorry you have to go through all of that. I can relate so much! And yes we WILL enjoy our lives.

    My gyn had to put me on hormones because of the dryness issues. I was bleeding there too.

    Like I said this is such a great site and thank you again!!Laughing

  • judyv3
    judyv3 Member Posts: 143 Member
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    Totally Understand

    I feel the same way you do.  I try to eat things that won't bother me, but sometimes it seems everything bothers me.  I haven't had too much bleeding and I can believe how frightening that is.  And yes, I am grateful that I am NED, but there are times that I am really angry that thing are not anywhere near the way they used to be.  Sex?  I'm not sure how painful it would be, I have no desire - I think the fast track through menopause caused that.  I just feel like I have spent my whole life taking care of people - so now it's time to take care of me.  I am constantly consumed with guilt though.  

    I feel like if I could get the eating/digestion thing under control, things would be much better.  Just not sure how to do that.  But I am thankful that we can share with each other or I think I would feel like I am going insane.

    Oh happy days! :)

    Judy

  • Barb5454
    Barb5454 Member Posts: 125
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    judyv3 said:

    Totally Understand

    I feel the same way you do.  I try to eat things that won't bother me, but sometimes it seems everything bothers me.  I haven't had too much bleeding and I can believe how frightening that is.  And yes, I am grateful that I am NED, but there are times that I am really angry that thing are not anywhere near the way they used to be.  Sex?  I'm not sure how painful it would be, I have no desire - I think the fast track through menopause caused that.  I just feel like I have spent my whole life taking care of people - so now it's time to take care of me.  I am constantly consumed with guilt though.  

    I feel like if I could get the eating/digestion thing under control, things would be much better.  Just not sure how to do that.  But I am thankful that we can share with each other or I think I would feel like I am going insane.

    Oh happy days! :)

    Judy

    Judyv3

    Thank you so much!! I hate that we all have this in common but am so thankful that we all have each other. I was like " Oh I don't need to talk to anyone" "It's all good" "I can handle this" NOPE! I need all of you and I want to be able to help as well.

    Hugs to all of you

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
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    judyv3 said:

    Totally Understand

    I feel the same way you do.  I try to eat things that won't bother me, but sometimes it seems everything bothers me.  I haven't had too much bleeding and I can believe how frightening that is.  And yes, I am grateful that I am NED, but there are times that I am really angry that thing are not anywhere near the way they used to be.  Sex?  I'm not sure how painful it would be, I have no desire - I think the fast track through menopause caused that.  I just feel like I have spent my whole life taking care of people - so now it's time to take care of me.  I am constantly consumed with guilt though.  

    I feel like if I could get the eating/digestion thing under control, things would be much better.  Just not sure how to do that.  But I am thankful that we can share with each other or I think I would feel like I am going insane.

    Oh happy days! :)

    Judy

    Hello, there.

    Barb5454 - I wish I could be "normal", too. But right now, I have to be content with controling the new, abnormal stuff as best I can. As time goes by, though, when more annoyances crop up, who's to say that they aren't issues of normal aging that would have happened to me without any cancer treatment whatsoever? Aging isn't for sissies, after all.

    judyv3 - Have you considered consulting with a gastroenterologist and a Registered Dietician about the eating problems? I went for a low-residue diet and it helped reduce the loose stools. I'm not following it strictly now, but I keep my awareness up concerning high fiber items. I've also had irritable bowel syndrome (IBS) since I was in at least as young as the 2nd grade. I try to keep up my awareness about foods that can aggravate that, too.

    You wrote: "I just feel like I have spent my whole life taking care of people - so now it's time to take care of me.  I am constantly consumed with guilt though."

    Boy, can I RELATE to that!!! I was an RN for many years and was just that kind of person, one who would stay 1-1/2 hours over time because I spent the shift with the little kids and their parents instead of charting. Or I would call in the middle of the night to see how little so-and-so was doing. I also moved in with and took care of my three best friends while they were each dying of cancer (lung, uterine, and renal). My husband was great about it, except that he invited The Uncle to live with us and I have to take care of him now that he's 87 and becoming more and more effected by dementia. (I survived cancer, but doubt that I can survive dementia. >_< ) And guilt??? I am a master of guilt. Surviving cancer was a real guilt trip, especially when I had such wonderful friends who did not survive it.

     

  • Gulamin
    Gulamin Member Posts: 134
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    Barb5454 said:

    Judyv3

    Thank you so much!! I hate that we all have this in common but am so thankful that we all have each other. I was like " Oh I don't need to talk to anyone" "It's all good" "I can handle this" NOPE! I need all of you and I want to be able to help as well.

    Hugs to all of you

    We all need each other

    I am out now 4 years and still come back to all of you. What a blessing. I am having vaginal bleeding on and off... sounds like you did too and are now on hormones? I have an appointment with my gyno tomorrow... lets see what she says.

  • mp327
    mp327 Member Posts: 4,440 Member
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    Gulamin said:

    We all need each other

    I am out now 4 years and still come back to all of you. What a blessing. I am having vaginal bleeding on and off... sounds like you did too and are now on hormones? I have an appointment with my gyno tomorrow... lets see what she says.

    Gulamin

    I'm glad to see you back here, but I'm sorry you are experiencing the vaginal bleeding.  I hope your appt. goes well today and that this is nothing serious.  Best wishes.

    Martha

  • LaCh
    LaCh Member Posts: 557
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    nuts!

    Nuts! I can't eat nuts, and I love nuts. I used to just say oh, %$# it, eat my favorite macadamia nuts and live with a week of bleeding aftwerards, but the last time I did it, it was more than just blood, which I can live with, but it was very painful for the week after. I guess I probably abraded my already-destroyed-by-radiation internal tissue. I'm 2 years post tx, and if it hasn't changed by now, I guess it probably won't. Salads are out becase all raw foods are out (I have digestion issues--one of my tricks it to over cook everything, so "raw" is definitely a thing of the past).

    But for me, nuts=blood+pain, and blood I can ignore, but pain is....painful.   

  • pializ
    pializ Member Posts: 508 Member
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    LaCh said:

    nuts!

    Nuts! I can't eat nuts, and I love nuts. I used to just say oh, %$# it, eat my favorite macadamia nuts and live with a week of bleeding aftwerards, but the last time I did it, it was more than just blood, which I can live with, but it was very painful for the week after. I guess I probably abraded my already-destroyed-by-radiation internal tissue. I'm 2 years post tx, and if it hasn't changed by now, I guess it probably won't. Salads are out becase all raw foods are out (I have digestion issues--one of my tricks it to over cook everything, so "raw" is definitely a thing of the past).

    But for me, nuts=blood+pain, and blood I can ignore, but pain is....painful.   

    Nuts

    Me too! I love nuts, but if I do give in now, it's like passing razor blades or shards of glass. I remember just after I finished treatment, like you LaCh, 2 years ago, I went to a wake. Someone suggested I eat the raw carrot because it would be good for me. I wish! However, I am fortunate because as time has gone by, there are few foods i can't tolerate now. My biggest problem is that I can't eat the quantity of fruit and veg that I did before treatment. I CAN eat it, but only in small amounts. But nuts.......and my favourite ice cream was a Joe's coffee nut sundae. Sigh! But if that's all I have to deal with, I am grateful

  • LaCh
    LaCh Member Posts: 557
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    pializ said:

    Nuts

    Me too! I love nuts, but if I do give in now, it's like passing razor blades or shards of glass. I remember just after I finished treatment, like you LaCh, 2 years ago, I went to a wake. Someone suggested I eat the raw carrot because it would be good for me. I wish! However, I am fortunate because as time has gone by, there are few foods i can't tolerate now. My biggest problem is that I can't eat the quantity of fruit and veg that I did before treatment. I CAN eat it, but only in small amounts. But nuts.......and my favourite ice cream was a Joe's coffee nut sundae. Sigh! But if that's all I have to deal with, I am grateful

    yep yep! pializ

    I agree. I miss my mac nuts, but it's like razors afterwards, so in the end, it's not worth it. But I'm with you... If this is all I've got to deal with, I count myself lucky.  I lost a friend to pancreatic cancer a few months ago. And I can't eat nuts?  I mean.... really. What's there to complain about? Nothing.  With regard to fruits and vegetables, like I said, I overcook everything and believe it or not, then I puree it. It's BABY FOOD for gods sake, but if I don't do all that, I can't digest my food.  It sits in my stomach for a week. This way, it eventually exits and winds it's way south. There's a litany of foods that I can't eat now, but I  can't really say that I feel deprived. As long as I'm not hungry, I'm ok.

  • Barb5454
    Barb5454 Member Posts: 125
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    LaCh said:

    yep yep! pializ

    I agree. I miss my mac nuts, but it's like razors afterwards, so in the end, it's not worth it. But I'm with you... If this is all I've got to deal with, I count myself lucky.  I lost a friend to pancreatic cancer a few months ago. And I can't eat nuts?  I mean.... really. What's there to complain about? Nothing.  With regard to fruits and vegetables, like I said, I overcook everything and believe it or not, then I puree it. It's BABY FOOD for gods sake, but if I don't do all that, I can't digest my food.  It sits in my stomach for a week. This way, it eventually exits and winds it's way south. There's a litany of foods that I can't eat now, but I  can't really say that I feel deprived. As long as I'm not hungry, I'm ok.

    Wow!!

    Lach and Pializ here are the foods I cannot eat at all. Nuts, popcorn, and raw foods. I can't drink alcohol either because I bleed horribly.

    I can't eat like I use to, and I would go ahead and eat the food anyway and bleed but the pain is awful.

    I've finally have accepted I can't eat these foods. However, I really wish I could lose weight but being 56 years

    old is more difficult to lose weight. I still have being tired issues so I have to do low impact exercises.

    I became so scared of the cancer coming back, that I was upset if I ate something that didn't "agree" with me.

    I was afraid to be plump because of cancer likes fat cells and sugar.

    I'm know on an anti anxiety and I can think a little clearer

  • pializ
    pializ Member Posts: 508 Member
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    Barb5454 said:

    Wow!!

    Lach and Pializ here are the foods I cannot eat at all. Nuts, popcorn, and raw foods. I can't drink alcohol either because I bleed horribly.

    I can't eat like I use to, and I would go ahead and eat the food anyway and bleed but the pain is awful.

    I've finally have accepted I can't eat these foods. However, I really wish I could lose weight but being 56 years

    old is more difficult to lose weight. I still have being tired issues so I have to do low impact exercises.

    I became so scared of the cancer coming back, that I was upset if I ate something that didn't "agree" with me.

    I was afraid to be plump because of cancer likes fat cells and sugar.

    I'm know on an anti anxiety and I can think a little clearer

    Food restrictions

    I guess over time we adjust to what we can or cannot eat, and acceptance is key to that. If I eat something that disagrees with me, the repercussions can last for a week or more, but might not show up until 24-48 hours after eating the problem food. I have other digestion issues from having a hiatus hernia and gastric reflux, so it's a bit of a juggle. But once we accept our limitations, we can work with that &  find new recipes that we can enjoy if we prepare them the way our bodies can cope. I'm still learning, & it can get tricky in company when going to certain restaurants. My colleagues have developed a Xmas eve tradition. They have a Macdonalds breakfast. Now I have never liked Macdonalds, but went for what I thought was a safe option, which included some potato hash browns. Omg, they were just so greasy & within minutes I needed the bathroom urgently. So even with a 'safe' option, it was the way it had been cooked. I won't be doing that this year! It's the same with medication. Paracetamol has never helped me unless combined with something else eg codeine or aspirin. Due to other health considerations (I'm a wreck lol), I can no longer take aspirin, so if I take the codeine option now it upsets the way my bowels work. Having recently had flu type symptoms, I needed to take something that would work. So the repercussions set in. This is the way it is, & I am learning. It's a new way of life, and thrust upon us. But it is life, and with acceptance of the limitations comes the quality. Sometimes easier said than done

  • LaCh
    LaCh Member Posts: 557
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    Barb5454 said:

    Wow!!

    Lach and Pializ here are the foods I cannot eat at all. Nuts, popcorn, and raw foods. I can't drink alcohol either because I bleed horribly.

    I can't eat like I use to, and I would go ahead and eat the food anyway and bleed but the pain is awful.

    I've finally have accepted I can't eat these foods. However, I really wish I could lose weight but being 56 years

    old is more difficult to lose weight. I still have being tired issues so I have to do low impact exercises.

    I became so scared of the cancer coming back, that I was upset if I ate something that didn't "agree" with me.

    I was afraid to be plump because of cancer likes fat cells and sugar.

    I'm know on an anti anxiety and I can think a little clearer

    5454 some same, some different

    the same: my attitude is if I bleed, I bleed, I don't care, but the pain that accompanies it is a deterrent. Like I've said before, raw foods are impossible, but that's more to do with digestion issues than elimination issues (a "leftover" from 5FU, mitomycin, or both).  I don't drink so can't say  what effect alcohol would have had. Fatigue is still, after two years, off the charts.

    The different: Weight is too low, but I'm not too concerned about it, although I do, from time to time, think that if I get sick with something, I have no reserves; as far as the cancer returning, I don't expect it to, so don't worry about it.

    So, yeah, these are problems that can be managed, and my attitude us, everybody has "something," and the older you get, the more "something's," one generally has. Not always, but often. But I do miss those macadamia nuts.

  • LaCh
    LaCh Member Posts: 557
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    pializ said:

    Food restrictions

    I guess over time we adjust to what we can or cannot eat, and acceptance is key to that. If I eat something that disagrees with me, the repercussions can last for a week or more, but might not show up until 24-48 hours after eating the problem food. I have other digestion issues from having a hiatus hernia and gastric reflux, so it's a bit of a juggle. But once we accept our limitations, we can work with that &  find new recipes that we can enjoy if we prepare them the way our bodies can cope. I'm still learning, & it can get tricky in company when going to certain restaurants. My colleagues have developed a Xmas eve tradition. They have a Macdonalds breakfast. Now I have never liked Macdonalds, but went for what I thought was a safe option, which included some potato hash browns. Omg, they were just so greasy & within minutes I needed the bathroom urgently. So even with a 'safe' option, it was the way it had been cooked. I won't be doing that this year! It's the same with medication. Paracetamol has never helped me unless combined with something else eg codeine or aspirin. Due to other health considerations (I'm a wreck lol), I can no longer take aspirin, so if I take the codeine option now it upsets the way my bowels work. Having recently had flu type symptoms, I needed to take something that would work. So the repercussions set in. This is the way it is, & I am learning. It's a new way of life, and thrust upon us. But it is life, and with acceptance of the limitations comes the quality. Sometimes easier said than done

    Pializ

    my timeline is the same as yours; 24-48 hours for onset of "paying the price" for doing what I shouldn't do and about a week to get over it. It's the case with nuts, bleeding and pain. like you, too much oil, or, better put, eating the wrong kind of oil (the kinds most restaurants use) wreak havoc, but not in the same way that they do for you; for me, it reduces my stomach emptying speed from "stop" to "full stop," which describes, in a nutshell, my digestion issues in general. The truth is, I eat out so rarely that it's not much of an issue and I cook with macadamia nut oil or ghee, neither of which seem to have an adverse affect.

  • Barb5454
    Barb5454 Member Posts: 125
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    LaCh said:

    5454 some same, some different

    the same: my attitude is if I bleed, I bleed, I don't care, but the pain that accompanies it is a deterrent. Like I've said before, raw foods are impossible, but that's more to do with digestion issues than elimination issues (a "leftover" from 5FU, mitomycin, or both).  I don't drink so can't say  what effect alcohol would have had. Fatigue is still, after two years, off the charts.

    The different: Weight is too low, but I'm not too concerned about it, although I do, from time to time, think that if I get sick with something, I have no reserves; as far as the cancer returning, I don't expect it to, so don't worry about it.

    So, yeah, these are problems that can be managed, and my attitude us, everybody has "something," and the older you get, the more "something's," one generally has. Not always, but often. But I do miss those macadamia nuts.

    LaCh and everyone

    What keeps me going is I"m still here. The alternative would be awful!.

    I get consipated a lot. How ever I will have an accident now and then. I'm keeping a food diary of what I can and cannot eat. I've gone completely plant based with the exception of raw veggies I cook all of them.

    I have my CT Scan coming up in March and so hopefully it will be year 2 of NED.

     

  • LaCh
    LaCh Member Posts: 557
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    Barb5454 said:

    LaCh and everyone

    What keeps me going is I"m still here. The alternative would be awful!.

    I get consipated a lot. How ever I will have an accident now and then. I'm keeping a food diary of what I can and cannot eat. I've gone completely plant based with the exception of raw veggies I cook all of them.

    I have my CT Scan coming up in March and so hopefully it will be year 2 of NED.

     

    5454

    Ninety percent of my diet is plant based as well, but it always was, so that's nothing new. I eat fish and eggs as a source of protein, but it's still a 9:1 ratio. I avoid most grains except for moong dal and wild rice, both very occasionally because they tend to slow things down even more than they already are, but as I said before, it all has to be cooked to within an inch of being mush (and the vegetables get blended anyway, so they ARE mush). I don't get constipated in the true sense of the word, meaning that the problem (for me) isn't in my colon but in that my stomach and small gut gut motility are so slow as to be almost nonexistant (from the chemo). For me, once it gets down to my colon, I'm good to go; it's getting it all down there that's my challenge. Some tricks that I've found, that don't solve the problem, but that ameleoriate it, are ginger to get my stomach to empty (grated root, boiled, juice drunk with every meal) and to help with small gut motility (and large as well) I take magnesium in pretty high amounts, but I've been doing that for years to help with hypertension and leg cramps. So those things, like I said, don't really solve the problems but they diminish the problems. Accidents... yeah, they happen, but that's because my butt no longer can tell the difference between a gas and a solid, if you know what I mean... so I err on the side of caution and assume that it's all the latter and don't tempt fate. I'm 2 years post tx too, but I don't do any follow-ups, for a variety of reasons... In any case, I'm not worried about a recurrance and that's also for a variety of reasons which I won't bore anyone with... Anyway, those are some of the tricks that I've come up with...

  • TraceyUSA
    TraceyUSA Member Posts: 316
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    It's great to be able to

    It's great to be able to compare notes with people who have been through the same treatment.  The doctors and medical community do not tell you these things and even lead you to believe that they are not "normal" after effects of treatment.  The people on this site are an invaluable source of information, solutions and compassion.

  • LaCh
    LaCh Member Posts: 557
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    TraceyUSA said:

    It's great to be able to

    It's great to be able to compare notes with people who have been through the same treatment.  The doctors and medical community do not tell you these things and even lead you to believe that they are not "normal" after effects of treatment.  The people on this site are an invaluable source of information, solutions and compassion.

    Tracey

    just my take: I learned very early on in my process that the last person to ask about the treatments, their side effects, long or short, how to deal with issues that came up during and after the treatments were my doctors. Better to ask someone who's gone through it. That was my opinion before treatments even began and was confirmed as they unfolded. Doctors can calculate your gray dosage, your chemo dosage, but as far as dealing with the realities of what's happening, my experience was that they were pretty useless. I'm sure that that's not everyone's experience, but it was mine.