Post Treatment Pain

TB1985 said:

Post Treatment Healing

Good morning!  Just found this wonderful discussion board.  So glad you all are here.

Like others who have posted, this has been the most painful and (wrongly so) shameful time of my life.  In 2011, I was diagnosed with Breast Cancer, had a double mastectomy followed by chemotherapy.  I am grateful to be a survivor.  It took time to get energy and hair but moved on with my life.

Last year in September of 2016, I diagnosed with anal cancer due to the HPV virus.  I was riddled with shame because with this cancer I felt like I had caused it (which by doctor stated was not true in my case).  Also my life suddenly became all about poop and problems with bowel control.  Lots of shame.

I had two rounds of a chemo pump and 30 radiation treatments.  This caused mouth sores, loss of hair and unbelievable pain and weakness.  My husband was awesome and cheered me on to finish and not quit.  Treatments ended on November 17th.  My strength and 75% of my energy is back (I still have to nap in the afternoon).  I do have leg muscle ache when I stand and start walking but that's getting better. 

I am writing because my bowels are so out of whack still.  I just start to heal in the anal/opening area when I will be hit with such a diarraha bout that I become extremely tender again.  This happened again last week.

How long does this last? Or is this the new norm?

I love that you are out there.  I am very emotional this morning after reading your posts and because pain is back.  I see my chemo onc next week and am going to ask for a cancer therapist reference for the emotions.

Would love to hear your experience in this area.

God bless you all

WE ARE WARRIORS!!

Terri

Welcome to this group--I'm glad you've found us.  But sorry you have a reason to be here.  You'll get lots of support though!

To address you bowel issues, I can totally relate.  It took about 6 months for my bowels to calm down and for the diarrhea to ease up.  Like you, I would just begin to heal, then wham!  It was frustrating.  I knew that my diet was probably partially to blame, but only through trial and error, did I figure out some of the foods that were trouble.  Too much fiber, as that in fresh fruits and veggies, especially eaten raw, seemed to really set me off.  I realized I could eat nothing with seeds, such as strawberries, kiwi, and that the produce that contained the most fiber was NOT my friend.

Other than the bowel issues, it sounds like you are doing quite well in your recovery and I hope that will continue.  One thing I might suggest to ease any anal pain is to try Lidocaine gel.  It may numb the area some and give you some relief.

Please keep us posted on how you're doing and how we can help you.  We are here for you!

Martha

TB1985 said:

Post Treatment Healing

Good morning!  Just found this wonderful discussion board.  So glad you all are here.

Like others who have posted, this has been the most painful and (wrongly so) shameful time of my life.  In 2011, I was diagnosed with Breast Cancer, had a double mastectomy followed by chemotherapy.  I am grateful to be a survivor.  It took time to get energy and hair but moved on with my life.

Last year in September of 2016, I diagnosed with anal cancer due to the HPV virus.  I was riddled with shame because with this cancer I felt like I had caused it (which by doctor stated was not true in my case).  Also my life suddenly became all about poop and problems with bowel control.  Lots of shame.

I had two rounds of a chemo pump and 30 radiation treatments.  This caused mouth sores, loss of hair and unbelievable pain and weakness.  My husband was awesome and cheered me on to finish and not quit.  Treatments ended on November 17th.  My strength and 75% of my energy is back (I still have to nap in the afternoon).  I do have leg muscle ache when I stand and start walking but that's getting better. 

I am writing because my bowels are so out of whack still.  I just start to heal in the anal/opening area when I will be hit with such a diarraha bout that I become extremely tender again.  This happened again last week.

How long does this last? Or is this the new norm?

I love that you are out there.  I am very emotional this morning after reading your posts and because pain is back.  I see my chemo onc next week and am going to ask for a cancer therapist reference for the emotions.

Would love to hear your experience in this area.

God bless you all

WE ARE WARRIORS!!

Terri

Hi Terri and welcome,

It is amazing how strong we are when we have no other real choice. Emotions are good and crying is part of connecting with our feelings. My grandpa used to say "have a good cry once in a while, it will make your eyes sparkle"..... I bet most of us here have beautiful eyes!!

I too have been treated for breast cancer as well as anal cancer. In 2011 dx with Stage 3b anal cancer at which time I had ostomy surgery, chemo, radiation. In 2012 breast cancer and a double mastectomy and now on Arimidex. In 2015 anal cancer mets to my lung and treated with surgery to remove the lobe that contained the mass followed by chemo. My body is surely changed, and I too have had a rollercoaster of emotions, but somehow, things are mostly ok now, I'm good.

I'm kind of fortunate to have the ostomy because while my bowels are still affected by what I eat, I don't have the pain that so many here do when I go. Often I read these stories and my heart aches for you all suffering in such a way every day. Who ever thought that so much of our daily talk would one day be centered around pooping!!

As far as energy goes, I remember at about 6 months post, thinking I felt pretty good, but looking back I was still not there yet. It wasn't until closer to a year when I realized how good really felt! (Then right after that came the breast cancer dx) Talk about emotions going up and down! Yikes!

Anyhow, just wanted to say hello, and know we are here for you as you move forward. Please stay in touch and let us know how your appointment goes next week.

katheryn

Mollymaude said:

TB1985

I too know what you're talking about with diarrhea. I had a terrible time with it during radiation and afterwards. It does get better but I don't think it goes away. I still am prone to "diaper rash" being out a year from finishing treatment. Last night had it right after my bath and had to get back in tub all over again so my skin wouldn't get irritated. Lots of people have their favorite cream, I like one I was given in hospital that's called Clear Moisture Barrier Ointment by Coloplast. It really helps with skin irritation and seems to make wiping and getting skin clean easier. I have also used coconut oil outside vaginal area after it was recommended to me by three different health professionals. The thing I wish I had figured out sooner was to avoid lactose, your gut changes after the radiation and some people cant handle lactose anymore even if it was never a problem before. Also some of my pain was spasms of the small muscles in my pelvis and muscle relaxers helped a lot. If I get a bad round of diarrhea the cramps come back and can really hurt (Charley horse in your rectum!)

I still feel embarrassed about my cancer being caused by HPV, but cervical cancer is caused by HPV and there's no stigma, go figure. I guess it's just something to keep working on. My teenage kids know, I've explained it matter of factly and they seemed to accept it fine. 

Its easy to get depressed, I take celexa and that helps and talk with friends. Counseling would be a good idea but make sure you get a good counselor you like otherwise it can be disappointing.

I hope someday you can find some humor in our plight. The other day I took my daughter to PF Changs and got instant diarrhea and was stuck on toilet with cramps. There I am on toilet at PF Changs texting my daughter "I'm helpless- poop, cramp, poop, cramp" and poor girl is out there waiting for me- she texted back "dude hurry up". I finally had her go on without me to Forever 21 to shop. I slunk out of bathroom 15 minutes later hoping no one noticed how long I was in there! 

Mollymaude, I'm not to the point where I'm having diarrhea yet...in fact, I'm dealing with constipation currently.  Yesterday, after using the toilet after radiation, I noticed they had the paper toilet seat protectors hanging on the wall.  I'm going to snag a couple to carry with me in case I'm away from home when I need to poop.  Most public restrooms no longer have those for patrons.  Better to have and not need than to need and not have!  So thanks for that little brainstorm!