NED 6 months - New Member

Kim Gaia said:

Congrats on your 6 months NED

Congrats on your 6 months NED, HoneyD54! You must have been thrilled to get that news. I long for such news myself. Not sure if it will be possible. But I keep the faith. What else can we do? Was diagnosed in March this year. Have not yet started chemo-radiation. My odds don't seem particularly good, partly because I also have CLL (Chronic Lymphocytic Leukemia), which wreaks some havoc with my immune system and can cause low neutrophils. Could affect my ability to do full chemo.

I would be interested in what the 'new normal' is for you, HoneyD, if you don't mind saying. Are you able to walk distances and sit without discomfort? Bowel continence okay? I think it's great that you got going on regular and pelvic floor PT as soon as you were able. That would probably make quite a difference to recovery.

all the best to you!

kim

 

it must be difficult to have CLL and now have to deal anal cancer.  I am sorry you have to go through this but it worked for me and I hope it will for you too.  Here is the new normal for me now at 9 months post treatment (6 months NED). Yes I can walk distances, I recently went on an easy (mostly flat) 3 mile hike.  i can walk up hills and stairs but I am slower and have to take a quick rest after 3-4 flights of stair.  I haven't been running or biking yet.  i have swam a few times and that has felt good. Gentle easy yoga has been best for me because of the stiffness In my hip flexors and hamstrings.  I have some pain in my left hip that I notice getting in the car and putting on shoes.  The muscle/tissue under my sit bone R side where the tumor was, gets tender and slightly inflamed when I sit on the small hard plastic chairs at work (i work in an elementary school). So I sit on a small pillow or therapy ball whenever possible.  I have a square gel cushion that I have used since I was diagnosed and I still use it at home and in the car.  I even brought it into restaurants with hard seating.  I love that cushion!.

my bowel funcations have greatly improved over the past few month.  Initially I stayed close to home, had to run to the bathroom if I felt any gas and sometimes a fart would leak a small amount of feces with mucous. Currently I rarely take Imodium and my BM are still snake like but mostly firm.  I go less frequently and haven't had any leakage but I still get diarrhea occasionally so I always know where the batbrooms are locate.  I'm trying to figure out my diet as it relates to my BMs and I carry Imodium and spare under ware with me.  Some trigger foods for me are milk, beans and some raw vegetable.  Oh and beer is out now too but I have been able to enjoy some wine again. My digestive trac is louder than it used to be and my husband says I sound like a creaky door.  I have seen some blood in my stool but it is not much and is from radiation proctosis which my RAD oncologist said typically occurs 8-18 months post treatment and goes away. I have some vaginal stenosis and am using a dialator.  I hope that info helps.  Best to you through your. treatment and recovery.