Thank you Anal forum

Trubrit
Trubrit Member Posts: 5,804 Member
in Anal Cancer #1

For some unknown reason I popped onto this forum (I'm on the CRC forum) the other day and it almost blew my mind. 

I was diagnosed with CRC almost five (yeah, the FIVE is here this year) years ago. I had a resection followed by FOLFOX/5FU and Raditaion/5FU.  Cancer spread to my liver in 2014. 

The chemo was no fun, but the radiation was pure Hell. 

I have been a regular (as you can tell by how many posts I have undre my belt) on the CRC, but I have found only two or three people who have suffered through radiation like I did. I was feeling like maybe I was abnormal, or even making it up (can't make that kind of suffering up though). The continued side effects have also be difficult. 

Anyway, to make a long story a bit shorter, I popped on here and saw read the thread from the past that has been resurrected 'Pain from radiation burns - any recommendations?' And its like YES, YES, YES! That's me! Thats how bad it was. I'm not abnormal after all. 

Then, happy as I was reading that thread, I then read the old thread about vaginal stenosis by memeber cujuja4ever. I have, in all of my years posting on the CRC forum, not met anyone or had anyone mention they have suffered with severe vaginal stenosis; and there it was, all written out by members here; exactly what I have.  

So, I just wanted to say a big thank you to the folks on this forum. 

TRU

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    edited February 2017 #2
    TRU

    I'm glad you sneaked a peek at our forum.  We talk a lot about butts, vaginas, and anything and everything that has been affected by the radiation treatment we received for anal cancer.  I agree that radiation to that area of the body is pure hell, as you put it.  I am almost 8 1/2 years out of treatment and am still dealing with side effects, which I will most likely have all the rest of my life.  The pain of the radiation burns was horrible for me and towards the end of treatment, I wanted to just quit.  I'm so glad I didn't though!  Vaginal stenosis is another side effect that I cannot seem to overcome, despite using a dilator on a regular basis.  I have also had intestinal blockages, suffer from malabsorption syndrome, and was diagnosed with chronic kidney disease in late 2015.  I find myself often thinking "what's next?"  But I'm still here, so each day is a gift.

    Now that you've found us, I hope you'll feel free to come here for information, support and venting if needed.  We don't mind that your cancer does not match ours, but was just a little further up the pike.  I wish you well!

    Martha 

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited February 2017 #3
    Quit

    I also wanted to quit, and I'm no quitter.  I had nine more radiation sessions left, but it seemed like nine more months. I was crying in pain. Miserable was an understatement. The pain, I could only think of likening it to having a baby over and over and over again. Day in day out, week in week out. 

    My Rad Onc said I was tough and could see it through. I did, of course. Hurt to the end and for a good four weeks afterward. Open sores, weeping uncontrollably. 

    One good thing that came out of it, I love going commando. HA! 

    Thank you for your sweet reply. 

    TRU

  • mp327
    mp327 Member Posts: 4,440 Member
    edited February 2017 #4
    Trubrit said:

    Quit

    I also wanted to quit, and I'm no quitter.  I had nine more radiation sessions left, but it seemed like nine more months. I was crying in pain. Miserable was an understatement. The pain, I could only think of likening it to having a baby over and over and over again. Day in day out, week in week out. 

    My Rad Onc said I was tough and could see it through. I did, of course. Hurt to the end and for a good four weeks afterward. Open sores, weeping uncontrollably. 

    One good thing that came out of it, I love going commando. HA! 

    Thank you for your sweet reply. 

    TRU

    Trubrit

    Seems we are both a couple of tough cookies!  I'm glad you made it through the storm and I hope you carry on, despite any long-term side effects.  It's really all we can do.  I with you the best!

    Martha

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited February 2017 #5
    Trubrit said:

    Quit

    I also wanted to quit, and I'm no quitter.  I had nine more radiation sessions left, but it seemed like nine more months. I was crying in pain. Miserable was an understatement. The pain, I could only think of likening it to having a baby over and over and over again. Day in day out, week in week out. 

    My Rad Onc said I was tough and could see it through. I did, of course. Hurt to the end and for a good four weeks afterward. Open sores, weeping uncontrollably. 

    One good thing that came out of it, I love going commando. HA! 

    Thank you for your sweet reply. 

    TRU

    TRU.....

    Welcome......

    I am happy you found us! It must have been so difficult not to have anyone who could completely relate to all you were going through for so long. While I did not know of this forum during my dx and initial recovery, I found them shortly after. 

    I think our experiences are just not understandable unless you have actually shared them yourself, and thats what we have here. No topic is too embarrassing or unable to be discussed and likely someone else has had the same challenge.

    I'm glad you are moving forward in health, please stay in touch!

    katheryn

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