question about internal pain

13

Comments

  • pializ
    pializ Member Posts: 508 Member
    LaCh said:

    pializ

    Pializ,

    Your words are kind and appreciated. I came to the website for information, primarily, and I don't need to voice my feelings regarding treatment, and shouldn't, especially if they make others uncomfortable or seem, to them, inappropiate.  If discomfort is implied or a request is made, directly or indirectly, not to do that, whatever their reasons, I'll respect that.  The information found here is very useful and I'll continue to utilize it.  My philosphies, feelings and thoughts aren't necessary to document here and I don't feel compromised in any way by not doing it, nor will it affect the quality of the information that I find here, based on shared experiences.  It's quite helpful and it's all that I really need.  I have no others to consider in the choices that I make, and that's made those choices a lot simpler to make but as I said, I don't need to go beyond the information that I need, when I need it.  As for helping others, of course, we all want to help others and I do as well, but I think that the information is all here from others and I don't necessarily need to add to it, since it would just be redundant.  In any case, thanks for your words; very kind, very nice.

    LaCh

    You may wish to google Dr Peter Harvey.....after the treatment has ended. Wish I had technological advantage to link it for you.....

  • LaCh
    LaCh Member Posts: 557
    pializ said:

    LaCh

    You may wish to google Dr Peter Harvey.....after the treatment has ended. Wish I had technological advantage to link it for you.....

    pializ

    What's his specialty?  There are several different hits for Dr. Peter Harvey.

  • Lorikat
    Lorikat Member Posts: 681 Member
    LaCh said:

    pializ

    Pializ,

    Your words are kind and appreciated. I came to the website for information, primarily, and I don't need to voice my feelings regarding treatment, and shouldn't, especially if they make others uncomfortable or seem, to them, inappropiate.  If discomfort is implied or a request is made, directly or indirectly, not to do that, whatever their reasons, I'll respect that.  The information found here is very useful and I'll continue to utilize it.  My philosphies, feelings and thoughts aren't necessary to document here and I don't feel compromised in any way by not doing it, nor will it affect the quality of the information that I find here, based on shared experiences.  It's quite helpful and it's all that I really need.  I have no others to consider in the choices that I make, and that's made those choices a lot simpler to make but as I said, I don't need to go beyond the information that I need, when I need it.  As for helping others, of course, we all want to help others and I do as well, but I think that the information is all here from others and I don't necessarily need to add to it, since it would just be redundant.  In any case, thanks for your words; very kind, very nice.

    It helps some people to know
    It helps some people to know they are not the only one hurting/suffering during treatment. If I hadn't realized (by coming on this site) that everything I was going through had already been survived by many I would have been even more scared. (if that is possible!)
  • LaCh
    LaCh Member Posts: 557
    Lorikat said:

    It helps some people to know
    It helps some people to know they are not the only one hurting/suffering during treatment. If I hadn't realized (by coming on this site) that everything I was going through had already been survived by many I would have been even more scared. (if that is possible!)

    lorikat

    Yes, I also find it helpful to know that others have had the same degree of pain while going to the bathroom.  If I understood correctly, the comment deemed less than useful was my response to that pain and that's probably something that I ought not to have shared, don't really need to share and won't in the future.  It doesn't affect the value of the concrete information that can be found here.  We all have our needs, some need to hear it all, some don't, some need to say it all, some don't, but overall, it's important to me to be cognizant of others' feelings and once it's pointed out that something I've said is less that helpful, I can certainly respect that and stop. 

  • pializ
    pializ Member Posts: 508 Member
    LaCh said:

    pializ

    What's his specialty?  There are several different hits for Dr. Peter Harvey.

    LaCh

    He's a psychologist. The article title is

     

     

    After the Treatment Finishes - Then What?

     

  • LaCh
    LaCh Member Posts: 557
    pializ said:

    LaCh

    He's a psychologist. The article title is

     

     

    After the Treatment Finishes - Then What?

     

    pializ

    Thanks Pializ, found the article, will print and read it....

  • pializ
    pializ Member Posts: 508 Member
    Lorikat said:

    It helps some people to know
    It helps some people to know they are not the only one hurting/suffering during treatment. If I hadn't realized (by coming on this site) that everything I was going through had already been survived by many I would have been even more scared. (if that is possible!)

    Lorikat

    By people sharing their pain, & not being shy about saying just how painful it was for them, it really did help prepare me to cope with treatment. It meant that I could be 1 step ahead, and had all I could ready. I never used the morphine that was prescribed, but it was here if it was needed. For all I knew it was more than likely. I wasn't as scared as I would have been without this sharing. I knew that despite it being barbaric, I could do it! So thank you for sharing and help me deal with this 'experience'. It has meant a lot.

    Liz x 

  • Angela_K
    Angela_K Member Posts: 374 Member
    LaCh said:

    lorikat

    Yes, I also find it helpful to know that others have had the same degree of pain while going to the bathroom.  If I understood correctly, the comment deemed less than useful was my response to that pain and that's probably something that I ought not to have shared, don't really need to share and won't in the future.  It doesn't affect the value of the concrete information that can be found here.  We all have our needs, some need to hear it all, some don't, some need to say it all, some don't, but overall, it's important to me to be cognizant of others' feelings and once it's pointed out that something I've said is less that helpful, I can certainly respect that and stop. 

    I view this site as . . .

    a safe place for survivors to fall.  We all experience life and our journey with cancer differently. This site is called the Cancer Survivors Network. Not the Cancer Survivors Network: Positive Experience Unit.  We should all be able to share openly and freely without judgement ~ embracing the diversity.

    Should we not be comfortable with what we are reading, find the back arrow and get off that particular thread or leave the board entirely.  I chose not to be a part of this board all through treatment.  I now participate on occasion and am only irritated by those who try to push their views and their views only on others.

    As far as I'm concerned, LaCh, you are welcomed to express your experience - including your pain ~ any way you wish.  And just for the record, my yahoo and **** burned so badly - internally, externally, up to my nose (or so I thought) - the week after treatment that one day I screamed and pleaded for my husband to bring me a gun. But the next day, it was over. The darkest hour is just before dawn.

    I admire each and every soul who has been dealt this cancer card and has had the courage to post ANYthing on this board. Your truth is just that. Your truth.  Thank you for sharing it.

    God bless everybody.

  • Marynb
    Marynb Member Posts: 1,118
    LaCh
    I am a strong supporter of the First Amendment! I support your right to say whatever you wish. What I was referring to is your opinions about death and quality of life. What you may not be aware of is that there are people reading your words who are truly fighting to stay alive. I am one of them. There are people reading your words who have had numerous surgeries. There are people reading your words who are dying and would do anything to stay alive to see their children grow up. If you feel that expressing the opinion that having a colostomy is worse than death for you is helpful, then you should continue to express it. Just understand that people come here looking for hope and information.

    I am willing to suffer any number of indignities so that I can be here for my daughter for just a few years longer until she is independent and happy. I have already had one major surgery and may have many more if needed. I suspect that there are many others in the same boat.
  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    Angela_K said:

    I view this site as . . .

    a safe place for survivors to fall.  We all experience life and our journey with cancer differently. This site is called the Cancer Survivors Network. Not the Cancer Survivors Network: Positive Experience Unit.  We should all be able to share openly and freely without judgement ~ embracing the diversity.

    Should we not be comfortable with what we are reading, find the back arrow and get off that particular thread or leave the board entirely.  I chose not to be a part of this board all through treatment.  I now participate on occasion and am only irritated by those who try to push their views and their views only on others.

    As far as I'm concerned, LaCh, you are welcomed to express your experience - including your pain ~ any way you wish.  And just for the record, my yahoo and **** burned so badly - internally, externally, up to my nose (or so I thought) - the week after treatment that one day I screamed and pleaded for my husband to bring me a gun. But the next day, it was over. The darkest hour is just before dawn.

    I admire each and every soul who has been dealt this cancer card and has had the courage to post ANYthing on this board. Your truth is just that. Your truth.  Thank you for sharing it.

    God bless everybody.

    Angela K - I wholeheartedly

    Angela K - I wholeheartedly agree with your comments above. We all have a right to express our opinions - and we all have the right to find the back arrow if we don't find a particular post helpful. I personally have found this whole forum enlightening, and one of the most important things I have gotten out of it, is that we are all individuals, and no two individuals are going to go through the treatments or recovery in exactly the same way, neither physically or emotionally.  I think it is good to get a broad perspective of experiences and opinions, both good and bad.  (If everyone on here only relayed their positive experiences, I personally would feel like a wimp because I had a tough time with the treatments and my recovery has been very slow).  But the message I've gotten through this board and my own personal experience the last nine months: Recovery does happen, and you can lead a good life - it may not be exactly the same, but life is still good and worth living. (And I DO believe cancer makes you a more patient and compassionate person, but it doesn't happen during treatment when you are struggling to survive, it happens afterwards, when you realize what a fragile, beautiful gift life really is). Someone's opinion on quality of life and whether they would submit to a colostomy might be different than yours - but that is all it is - his/her opinion, and they certainly have a right to express that opinion. I've found it helpful to read that many people lead normal lives and adjust to colostomies; LaCh's opinion that he wouldn't have one I do not find upsetting; that is his decision, just as it would be each and every one of us if we are faced with it. I thank everyone on here for sharing their stories - the good, the bad and the ugly - it has all been helpful.

  • LaCh
    LaCh Member Posts: 557
    Marynb said:

    LaCh
    I am a strong supporter of the First Amendment! I support your right to say whatever you wish. What I was referring to is your opinions about death and quality of life. What you may not be aware of is that there are people reading your words who are truly fighting to stay alive. I am one of them. There are people reading your words who have had numerous surgeries. There are people reading your words who are dying and would do anything to stay alive to see their children grow up. If you feel that expressing the opinion that having a colostomy is worse than death for you is helpful, then you should continue to express it. Just understand that people come here looking for hope and information.

    I am willing to suffer any number of indignities so that I can be here for my daughter for just a few years longer until she is independent and happy. I have already had one major surgery and may have many more if needed. I suspect that there are many others in the same boat.

    marynb

    Marynb,

    Thank you for your candor marynb.  Yes, I understand what you're saying and understood it when you made the original comment, which was why I posted the responses that I did.  With deep gratitude for all those who supported my right to say it (as you do as well, in theory at least) I respect your feelings and (as I said a while back) will no longer post those particular comments. It would make me a pretty dense person if I didn't realize that there are people reading my comments who are fighting to stay alive. I know that. I wouldn't have submitted to what I just submitted if I weren't as well, and while I may not be the brightest, neither am I the densest person in the world, so of course I know that people posting to this forum are fighting to stay alive. Maybe I was wrong in thinking that my views regarding my personal choices would influence others' and their personal choices, especially since each person bases their choices on a different set of criteria--some people have children, some have spouses, some people have parents, etc. I don't. So clearly, my choices are my own and at no time did I advocate that anyone choose what I choose, nor would I ever do such a thing. I was simply expressing my own feelings and choices based on many factors, just as we all do. That said, I'm very willing cede to the needs and desires of others. If my feelings regarding my response to my experience has been troubling to you, I regret it, and as I said, will not repeat it. As I also said, I don't need to express my feelings about a colostomy and death, pain and death, cancer and death or anything else and death, and especially if you or anyone else is offput by what I say. I respect your choice to pursue any means necessary in order to live, for those whom you love. I understand that many make their treatment decisions based on staying alive for loved ones. If anything that I've said regardng my perspective or my choices has negatively affected you in any way, I'm sorry, and will say again, they won't be repeated.  I'm not sure how else I can say it, but will repeat once again that I respect your feelings and won't post those things that are troubling or offensive to you, and regret if anything that I've said prior to now has been difficult or upsetting for you. 

  • LaCh
    LaCh Member Posts: 557

    Angela K - I wholeheartedly

    Angela K - I wholeheartedly agree with your comments above. We all have a right to express our opinions - and we all have the right to find the back arrow if we don't find a particular post helpful. I personally have found this whole forum enlightening, and one of the most important things I have gotten out of it, is that we are all individuals, and no two individuals are going to go through the treatments or recovery in exactly the same way, neither physically or emotionally.  I think it is good to get a broad perspective of experiences and opinions, both good and bad.  (If everyone on here only relayed their positive experiences, I personally would feel like a wimp because I had a tough time with the treatments and my recovery has been very slow).  But the message I've gotten through this board and my own personal experience the last nine months: Recovery does happen, and you can lead a good life - it may not be exactly the same, but life is still good and worth living. (And I DO believe cancer makes you a more patient and compassionate person, but it doesn't happen during treatment when you are struggling to survive, it happens afterwards, when you realize what a fragile, beautiful gift life really is). Someone's opinion on quality of life and whether they would submit to a colostomy might be different than yours - but that is all it is - his/her opinion, and they certainly have a right to express that opinion. I've found it helpful to read that many people lead normal lives and adjust to colostomies; LaCh's opinion that he wouldn't have one I do not find upsetting; that is his decision, just as it would be each and every one of us if we are faced with it. I thank everyone on here for sharing their stories - the good, the bad and the ugly - it has all been helpful.

    islandgirlculebra

    Thank you for a thoughtful and insightful post.  Of particular interest to me were your comments on patience and how becoming more patient usually follows recovery but doesn't occur during recovery (or treatment).  That is, of course, my hope for myself.  Thanks also for your views on opinions expressed, positive, negative and everything in between. I still feel that the appropriate thing to do is to defer to those who may not be comfortable with certain opinions that I've expressed, especially since I don't feel a great need to express them.  Someone here referred to the desire to help others, which I think most of us feel. Sometimes, helping another has less to do what what you say and more to do with what you don't say, which is part of the reason why I'm wiling to withhold my feelings regarding my choices about death, colostomies and the like, even though my comments weren't about choices that others make but choices that I've made for myself.  Nevertheless, if my opinions are distressful to others, I don't have a problem withholding them, especially if the way to be helpful is in the "not saying," rather than in what I do say.  In any case, thanks for your post; I found it helpful.

  • Marynb
    Marynb Member Posts: 1,118
    LaCh
    I hope that you are healing well. As I said, you have the right to express yourself, of course. Maybe it helps others to know it is ok to let go of this fight. Maybe you hit a nerve. There comes a time when each one of us must decide when to let go. It is not for me to say when that is for you.

    Have a good weekend and take good care of yourself!
  • LaCh
    LaCh Member Posts: 557
    Marynb said:

    LaCh
    I hope that you are healing well. As I said, you have the right to express yourself, of course. Maybe it helps others to know it is ok to let go of this fight. Maybe you hit a nerve. There comes a time when each one of us must decide when to let go. It is not for me to say when that is for you.

    Have a good weekend and take good care of yourself!

    marynb

    Dear Marynb,

    As I mentioned in a recent post, most, if not all of us, have the desire to help others who are experiencing circumstances similar to our own. Sometimes, the best way to help another person is not with what you say to them but with what you don't say, which is why I'm very willing to withhold my thoughts and feelings from this forum if you or others find them distressful. Having the right to post whatever I want doesn't mean that I need to excercise that right, if doing so is injurious to others.  Sometimes answering your own needs is of paramount importance. Sometimes trying to answer someone else's is.  Do I have the right so say anything here?  Within reason, sure.  But in this case, taking into account the needs and feelings of others seems like the right thing to do.  In any case, as I've said, I don't feel any great need to voice my feelings; information is why I came to the forum.  Anyway, I hope that you also enjoy the weekend.

  • Barb5454
    Barb5454 Member Posts: 125
    Hi

    My name is Barb and I have and hopefully soone will be HAD anal cancer. In response to LaCh I have been done with treatment for 2 weeks and I still have pain internally. It freaks me out sometimes. Now my radiation oncologist said this is normal. I also have pelvic pain as well. Hope this helps.

  • Lorikat
    Lorikat Member Posts: 681 Member
    LaCh said:

    marynb

    Dear Marynb,

    As I mentioned in a recent post, most, if not all of us, have the desire to help others who are experiencing circumstances similar to our own. Sometimes, the best way to help another person is not with what you say to them but with what you don't say, which is why I'm very willing to withhold my thoughts and feelings from this forum if you or others find them distressful. Having the right to post whatever I want doesn't mean that I need to excercise that right, if doing so is injurious to others.  Sometimes answering your own needs is of paramount importance. Sometimes trying to answer someone else's is.  Do I have the right so say anything here?  Within reason, sure.  But in this case, taking into account the needs and feelings of others seems like the right thing to do.  In any case, as I've said, I don't feel any great need to voice my feelings; information is why I came to the forum.  Anyway, I hope that you also enjoy the weekend.

    LaCh.. Actually, your post
    LaCh.. Actually, your post helped me NOT to feel like a coward or a quitter because I have wondered and weighed the same options/thoughts. When I was where you are now in treatment I swore that if this didn't work I would just go "not so" softly into the night. I, like you, hurt so badly that i just didnt want to keep on going. Burns, infections, blood transfusions, and did I say pain?

    However, I am now 16 months out of tx. Things are working pretty good! I'm not afraid to go out to lunch with friends... My son and I meet for coffee once a week at a neighborhood cafe....(which we never did before). AND I REALLY CANNOT SAY I WOULD NOT DO TREATMENT AGAIN! Life is sweet.

    We are about the same age. And I GET it. While I have family and friends I love and they love me, and I WANT all the time I can get with them I GET IT.
    I WAS WHERE YOU ARE. And I am also where MaryNB is. And I GET IT.
    Reading your post was actually good for me, as is Marys post good for me. I was/am not the only wonderer. Thank you for that.

    I hope this post helps you to know YOU'RE not alone in your feelings and that time may change those feelings... (((((HUGS)))))). Lorie
  • Marynb
    Marynb Member Posts: 1,118

    Truth

    The truth is out there about pelvic radiation and this particular tx.  Take any symtom u have and put anal cancer next to it and you will find the truth.  My doctor told me it was brutal, painful and that I would not  want to finish.  Healing would take 3 months to one year.  That I would never be the same and that there would be side effects now and down the road.  Recovery 2 years out is not great.  But I would do it again.  I appreciate the good times even more.

     

    He never said the tx would be easy, the healing would be quick, and that I would be fine.  I resent these statements when I see them here as it is far from true, as we all know.

     

    I think real support would include the truth and how real heros made it thru for whatever reason.  I did it for my husband, he needs me.

    Phoebe
    I guess we all respond differently. I can honestly say that I did not find treatment "brutal" at all. I found it somewhat painful for about 2 weeks. Also, I healed from that cancer very quickly. Within 2 weeks, my skin was totally healed up and I felt relieved of pain I had felt for years. That is the truth for me and for lots of patients. I guess there is a very broad range and everything is relative. I have been far, far sicker. Sorry if you resent me saying that.
  • LaCh
    LaCh Member Posts: 557
    Lorikat said:

    LaCh.. Actually, your post
    LaCh.. Actually, your post helped me NOT to feel like a coward or a quitter because I have wondered and weighed the same options/thoughts. When I was where you are now in treatment I swore that if this didn't work I would just go "not so" softly into the night. I, like you, hurt so badly that i just didnt want to keep on going. Burns, infections, blood transfusions, and did I say pain?

    However, I am now 16 months out of tx. Things are working pretty good! I'm not afraid to go out to lunch with friends... My son and I meet for coffee once a week at a neighborhood cafe....(which we never did before). AND I REALLY CANNOT SAY I WOULD NOT DO TREATMENT AGAIN! Life is sweet.

    We are about the same age. And I GET it. While I have family and friends I love and they love me, and I WANT all the time I can get with them I GET IT.
    I WAS WHERE YOU ARE. And I am also where MaryNB is. And I GET IT.
    Reading your post was actually good for me, as is Marys post good for me. I was/am not the only wonderer. Thank you for that.

    I hope this post helps you to know YOU'RE not alone in your feelings and that time may change those feelings... (((((HUGS)))))). Lorie

    Lorikat

    Jeeze, what a wonderful post.  I'm deeply, sincerely gratified if anything that I said helped you in any way.  I guess sometimes even a comment made in passing can leave a positive impression.  Thanks for letting me know.

  • LaCh
    LaCh Member Posts: 557
    Barb5454 said:

    Hi

    My name is Barb and I have and hopefully soone will be HAD anal cancer. In response to LaCh I have been done with treatment for 2 weeks and I still have pain internally. It freaks me out sometimes. Now my radiation oncologist said this is normal. I also have pelvic pain as well. Hope this helps.

    Barb5454

    Well, "normal" I think, may be in the eye of the beholder. In any case, normal or not, I hope it resolves, for both of us.

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    Marynb said:

    Phoebe
    I guess we all respond differently. I can honestly say that I did not find treatment "brutal" at all. I found it somewhat painful for about 2 weeks. Also, I healed from that cancer very quickly. Within 2 weeks, my skin was totally healed up and I felt relieved of pain I had felt for years. That is the truth for me and for lots of patients. I guess there is a very broad range and everything is relative. I have been far, far sicker. Sorry if you resent me saying that.

    Marynb

    I am glad that your tx was somewhat symptom free and relatively easy.  I hope that for everyone.