question about internal pain

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.

if you do not mind answereing cause i am just curious----where were you treated ... how many radiation txs did you have????///cisplatin or mitomycin???   you did so well ---- i did not do that well but i am alive and doing very well now after 3.5 years...still have isssues and pain but i am used to it.....   sephie

Marynb said:

Sephie
Hi. I had the standard treatment of 30 radiation treatments, and 5FU, and mitomycin. I did surprisingly well, thank God! Especially since I had another cancer which required major surgery 8 weeks later. I don't want to give too much identifying info. I was treated at a terrific hospital! I can email you more specific info if you want it.

I am sure some of it has to do with the skill of the doctors, the equipment, and how each body handles treatment. I am so blessed! I just hope that it worked! Good for you that you remain cancer free after 3 years! That is great! Congratulations!

i am amazed when i hear how well you did.  i had only 28 radiation imrt txs...everything else was the same as yours...  sooooo glad that you did that well... i was at a great hospital also (MDA)  but just did not do too well and still have issues but like i said ... i have learned to handle them....   thx  again   sephie

Angela_K said:

Radiation dosage

Sephie ~ Remember too, that radiation dosages vary as well, which, of course, would have an impact. As would the exact location of the tumor.  There are many seen and unseen factors involved. MDA is the highest ranking cancer treatment facility in the nation - with the best doctors, state of the art facilities and cutting edge science. It goes to show that the effects of treatment is very much an individual "thing" in both how our bodies and our minds handle the physical and mental trauma of it all.  

I don't think I realized how hard it all had actually been until six months to a year out of treatment when my body and head settled out of the 'battle' mode and I truly began to mourn the loss of the 'old' me and accepted the differences and redefined myself. Looking back, I certainly see it as a continuing process long after the last zap of radiation.

I think you and all of us who have had to endure and adapt have an elevated level of empathy for others going through this mess. And that's a beautiful thing.  Many blessings to you, sweet one.

Angela

I have to echo Angela's comments.  Each of us is an individual and our experiences, while having many commonalities, also have many differences.  I also discourage newbies from comparing their case to anyone else's, as there are so many things that play into each person's outcome.

I think I am still, at times, trying to come to grips with what happened to me, now almost 5 years ago.  Some things will be a lifelong struggle--the emotional stuff and occasional physical reminders.  Acceptance is key, but certainly not easy.  Sharing with others, such as those on this board, is helpful beyond words.

LaCh said:

mp327 question

Hello mp327,

I'm hesitant to ask you this question as it seems rather personal and invasive, so I'll simply ask you with the understanding that if you don''t want to answer, please feel free to say so and I'll understand completely and respect those boundaries. At the moment I'm utterly consumed with pain, internal and external, to the exclusion of everything else.  What are the emotional issues (and the physical) that you speak of that have followed you through the years?  And please, as I said, if this is a  question too personal or too prying, I understand and respect your desire not to answer,

No problem in asking this question.  While I consider myself to be a pretty strong person, I have struggled with both emotional and physical issues after treatment.  On the emotional side, it is the fear that I have felt and currently feel (and will probably always feel) that my cancer will someday resurface.  I don't think that's out of the norm for anyone who has been treated for cancer.  Some days are better than others, when I can go for hours without thinking about cancer.  Other days, it seems to dominate most of my day.  That being said, please keep in mind that I am on three different cancer support sites and moderate one of those sites.  So, in trying to support others, I suppose it keeps me from distancing myself further from this disease.  I have vowed to myself to back away from the sites once I hit the 5-year survivor mark, which will be in September, so that I can focus on other things in my life, such as an ailing mother with dementia.  I will not disappear completely, but my presence here and elsewhere will not be as constant.

Since anal cancer is a disease with a stigma attached to it, I have also dealt with emotions ranging from guilt to shame to embarrassment.  However, I believe that is in the past and I've been able to focus more on trying to educate others about this disease and be an example of someone who doesn't fit the mold for this disease but got it anyway.  People need to know that no one is exempt from this disease, no matter their lifestyle.  There is still much to be learned about this disease and awareness needs to be targeted. 

As for the physical, I have had the usual bouts with fatigue, hip pain and stiffness, and proctitis.  In the beginning, I went into serious panic mode whenever I noticed even the slightest amount of blood with a BM.  Now I know that, although still a little concerning, it seems to come with the territory through which I now navigate.  I really do not have many complaints on the physical side, but as I just posted last week, I was hospitalized for a partial small bowel obstruction, which my doctors feel was probably related to the radiation treatment.  As we have said many times on this board, radiation is the gift that keeps on giving.  I must admit, in the weeks and months right after my treatment ended, I had myself convinced that I would never be able to do the things I did before cancer.  However, as my pic on this site shows, I have proven that to be wrong!  Most people who have never or will never have to have this type of treatment will also never run a marathon.  I consider myself very fortunate to have a mighty bit of determination!

I don't know what lies ahead--none of us do.  I just try to take it one day at a time.  On September 9th. of this year, I will be a 5-year survivor.  That will be a monumental day for me, although I don't know, truthfully, how much significance to put on that milestone.  I just know that's the usual benchmark for surviving this and any other cancer.  I hope I've answered your questions.  I'm open for more if you have them.  I hope your recovery is going well. 

LaCh said:

mp327 question

Hello mp327,

I'm hesitant to ask you this question as it seems rather personal and invasive, so I'll simply ask you with the understanding that if you don''t want to answer, please feel free to say so and I'll understand completely and respect those boundaries. At the moment I'm utterly consumed with pain, internal and external, to the exclusion of everything else.  What are the emotional issues (and the physical) that you speak of that have followed you through the years?  And please, as I said, if this is a  question too personal or too prying, I understand and respect your desire not to answer,

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 said:

Sephie

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.

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

LaCh said:

mp327

mp327,

Thanks for your candor and response. While no one knows what lies ahead, not with cancer nor with what's going to happen when you step outside the door each day, it's helpful to know the thoughts and emotions that some people feel, and put a mental check mark near the ones that are shared and omit the ones that aren't.  It simply has to do with preparedness, which of course, is nothing but illusion.  Without going into specifics (I find that my take on things has a tendency to be upsetting to others, at times and I don't want that) I think that I have a better idea of what to expect, at least in broad strokes, since we're all individual and different. I understand your feeling of wanting to separate from these forums after 5 years; I'll probably do the same thing very much before that, not for the same reasons that you have but for others, and then will limit my posts (as I'm trying to do now) to information gathering rather than information or opinion sharing. As for my recovery and how it's going, at the moment it isn't going well and I have an appt in a short while to evaulate the external burns that are melting the flesh of my perineum.  The internal problem is still a mystery and the one thing that will drive me to the edge of despperation with pain that has no words adequate to describe it.  Anyway, thank you for your willingness to share some of the emotions that you feel.  Good luck with your continued healing from the latest experience.

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 **** 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.

mp327 said:

Angela--

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! 

 

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!

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.