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question about internal pain

LaCh
Posts: 509
Joined: Dec 2012

Has anyone experienced internal pain (not external) that's more or less constant (worse when I "go" but never really gone) starting at the end of week 2?  My radio oncologist says that it can't be from the radiation and this seems absurd to me.  Has anyone had more or less constant internal pain after week 2?

mp327's picture
mp327
Posts: 2823
Joined: Jan 2010

Thank you.  I also agree that preparedness for the "what ifs" is something we'd all like to possess, but that it's pretty unrealistic.  A day at a time is my approach.

Phoebesnow
Posts: 447
Joined: Apr 2011

It has been a roller coasters ride.  I too have recently been hospitalized for undetermined blockage.  Ihad some fibroids emboli zed thinking this was compressing my sigmoid colon.  It will take awhile for them to die and then we will know.  They have been unable to get thru on colonoscopy, but nothingshows on pet ct or MRI.  I think it's radiation damage.  I can feel my colon and the stools when I run my hands over my stomach.  I couldn't do this b4 radiation.

 

I have bright red blood a considerable amount every time I have a bowel movement.  It's like having a baby every time.  Even my pets are afraid of thescreaming.  I take 5 stool softness. Everyday and wash them down with milk of magnesia or a warm glassoff miralex.  My ass is so sore!  Including the skin around it.  Like I said its a roller coaster and day now this can change.  I pray for that.it. Could get depressing if you let it, but I don't.  I find joy in my life and it's not hard.  Like Sephie says you get used to it.

 

As for that pain la ch I know it well.it goes up the center of my body between my vagina and anus right into the middle of my stomach like a knife and then someone let it go and it's then a vibrating pain.  Like when someone sticks a knife into a butcher lock forcefully and they let go of the handle and it's just vibrating

.  The number of time I feel this pain has dwindled but not the intensity or the suprise of it.

 

I had 26 radiation txs.  It would be nice if people could fill out theprofile pagE.  it helped me a lot to know other people were similar to me.

 

Sorry about tops, but this system is difficult to navigate with an I pad.

Angela_K
Posts: 370
Joined: Jan 2011

Martha ~ I've said it before and I will say it again after reading your post to LaCh: You continue to be such a source of inspiration. It is reassuring to have longer term survivors on this board to encourage and inform. Knowing you through cyberspace has certainly enriched my life as a survivor and as a human being. You show vulnerability along side powerful strength, which makes you very human and easy to relate to.

I totally understand a need to separate yourself some from this and other cancer boards to truly thrive and I am right there with you at just 2 years NED. I so applaud your constant commitment to survivors for five full years.

You just may see me traveling to the deep South in the early fall to celebrate! (I also want to stalk Gregg Allman.)

With much love and respect,

Angela

 

mp327's picture
mp327
Posts: 2823
Joined: Jan 2010

Awwwww, you are such a sweetheart!  Thank you for the kind comments, which mean a great deal to me coming from you, as I respect you so very much.  I will not disappear totally after I hit the 5-year mark, but I really need to accomplish some things in my life outside of the world of cancer so that when I'm 99, I'll have no regrets.  That's right--99!  Smile

 

Should you go on a stalking trip which takes you to the great state of Georgia, please give me a heads up.  Perhaps we will meet someday!

 

Love to you too!

Angela_K
Posts: 370
Joined: Jan 2011

Sept celebration of your 5 year NED and I'm taking you with me to stalk GA in Richmond Hill. Kind of a Thelma and Louise thing. :)

 

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

LaCh, my heart goes out to you now.  As you already know from reading many posts, there is a wide range of the length of time it takes people to recuperate after the trauma of treatments.  It amazes me when I read comments from people that they felt treatment wasn't that bad and they were back to the treadmill a couple of weeks after treatment...... NOT SO with me, I had bad pain from the burns and was exhausted and felt sick. (I did not have the horrible internal pain you do with bowel movements - I wonder if your Drs. should check into this).  I felt crappy for at least a few months, and didn't feel anything close to normal for about four months.... I'm not telling you this to discourage you, rather to encourage you, because I remember how bad I felt and it was so depressing and I thought it was a hole I would never get out of. But I'm here to tell you - I DID get better, I DO feel good now. The one thing you have going good for you, I suspect by the time the really nice weather rolls around, you will be feeling good and can enjoy the things you talked about doing in one of your previous posts.  I have a few lingering side effects, but they have greatly improved with time: 1) bowel issues - watching what I eat greatly improves this (high fiber and raw vegetables for a time were taboo, but even that's getting better now); and 2) hip stiffness and muscle pain in thighs and buttocks - which also seems to be getting better with exercise).  I feel my quality of life is good now; I still worry about it coming back; this is something we all have to deal with in our own way. But I can tell you, for me the treatment and aftermath was hard; but now my quality of life is good and I am happy. If you ever want to talk on the private mail about how you are feeling, I'm willing to do that; nothing you have said has ever upset me.  

Marynb
Posts: 1134
Joined: Aug 2012

I am lucky that my response to treatment for anal cancer was so good because I have a second cancer that I will be dealing with for the rest of my life. I did have the maximum dosage of radiation. The important thing is whether the treatment worked. That, for me, remains to be seen. I pray they find a cure for all cancer very soon. I rely heavily on my faith and it has gotten me through all this adversity. For me, my faith is the gift that keeps on giving! I am truly blessed.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i hate that you are facing another cancer.... it does make for such a difficult emotional state....  your faith in God will help you  so much... i just do not have the right words to comfort you but i am here and prayers will be said...  hugs  to you   sephie

Marynb
Posts: 1134
Joined: Aug 2012

Thank you. You are very kind. I do appreciate prayers! P.s. I love your cat!

pializ
Posts: 255
Joined: Nov 2012

Your feelings and the reality of treatment are important, so please don't stop posting. I value your alternative take on things...... as I said before, they closely reflect mine  and it is reassuring to have your perspective on treatment, symptoms etc. You are not being cruel, hurtful, or disrespectful by expressing your opinion. We all have them. Where we differ is that whilst quality versus quantity is an issue for me, I have to consider other people i.e. my daughter & husband who mean so very much to me. Initially, I was told I had rectal cancer, for which the treatmentwas a colostomy and chemotherapy. A colostomy was well within my perspective of being doable, and if that is needed later on, well so be it. Our circumstances are different! Our perspectives, whilst similar, are also different. Each and everyone of us who have been diagnosed with anal cancer have different circumstances and perspectives. It goes with being human & long may it continue. I have made notes (brief....very brief) on what has helped my journey through treatment & will put it into some sort of document/post. I always think good has to come out of bad so if I can help someone else, that's OK.

LaCh
Posts: 509
Joined: Dec 2012

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.

pializ
Posts: 255
Joined: Nov 2012

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

LaCh
Posts: 509
Joined: Dec 2012

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

pializ
Posts: 255
Joined: Nov 2012

He's a psychologist. The article title is

 

 

After the Treatment Finishes - Then What?

 

LaCh
Posts: 509
Joined: Dec 2012

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

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

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
Posts: 509
Joined: Dec 2012

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. 

Angela_K
Posts: 370
Joined: Jan 2011

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 ass 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.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

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
Posts: 509
Joined: Dec 2012

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.

pializ
Posts: 255
Joined: Nov 2012

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 

Marynb
Posts: 1134
Joined: Aug 2012

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.

LaCh
Posts: 509
Joined: Dec 2012

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. 

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 509
Joined: Dec 2012

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.

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

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

LaCh
Posts: 509
Joined: Dec 2012

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.

pializ
Posts: 255
Joined: Nov 2012

I wiish there was a 'like' button!

Barb5454's picture
Barb5454
Posts: 61
Joined: Feb 2013

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.

LaCh
Posts: 509
Joined: Dec 2012

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.

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