Aug 25, 2012 - 2:16 pm
I haven't posted since April, just trying to survive and function. But I have questions. I was diagnosed in April 2011. I have chemo/radiation for 6 weeks. Healed from that and had my entire rectum removed on August 16th last year with a permanent colostomy. That was followed by 8 of 12 chemo treatments with 5FU and Oxylaplatin....Yuc!!! I had no lymph involvement. Tumor had gone thru the bowel wall and the tumor was right at the sphincter. Okay so here are the questions. I developed neuropathy in my hands and feet. When I stopped chemo at the 8 treatment mark, I felt like my legs were disconnected and my balance was off as was my fine motor skills. It seemed to worsen at first after treatment. That was very disheartening. Things have improved in that regard but I still have much tingling in my feet. Some mornings it is like stepping out of bed onto gravel. Seems worse when my feet are cold. Get zinging tingles up all the nerves in my legs if I get into a swimming pool that isn't warm enough for me. My legs tend to swell some since they removed lymph nodes in the abdomen. So I had started Lymph physical therapy back in December and was shocked what a difference it made in my ability to move my legs. Was put into thigh high heavy duty support hose. Then the fluid really collected at my hips and butt which of course is the area I was radiated. So I had to don a light weight panty girdle with a hole cut out for "Steve" the stoma----(the girls at my work named it)...I gave up pantyhose decades ago!!! So this is very annoying!!! If I don't wear them, then my legs are sooooo heavy by the end of the day. The other aspect is my hips and range of motion are so stiff!! I have been told it is because of the radiation as it "fibroses" the tissues. And the fluid collects there because it has no place to go and hard to travel thru fibrosed tissue. So I need to be massaging my legs---Ug!! Who has time to do all that?? I have recently started true physical therapy and wasn't very hopeful at first as the movements were very tiny and such. Was told alot of the issue is the nerves not gliding on the muscles and that is what is causing pain. Also am very weak in the muscles.. The therapy is beginning to make a difference. So here is the deal---anyone else dealing with this??? Doe the neuropathy really go away?? Some of what I heard it sounds like it doesn't??? I was told since mine is mostly "tingling" and not numbness it should go away but takes up to a year. I am 6 months out at this point. Swelling??? Told I may always deal with that.... I think that is one of my big annoyances. Putting the dang hose on every morning when I am in a hurry. Oh and the 105 degree heat this summer,,,, it was like wearing long underwear!! Wow!! This really sounds like major whining!! Sorry! It's just you know people look at me and I look fine on the outside---- and yes---done with treatment and I think people look at me and think---GREAT! you are done you are fine now! But I am not!! It is a daily reminder and when I stop to think about it or tell someone new my story. They gasp at all I have gone thru and the reality hits me and I break down. I have tried to just be strong and get thru it.... Not always stopping to grieve along the way.... then it hits me. In general I live my life fairly normally, with not as much stamina and stiff painful movements.... okay now I feel like I have been ranting---ha! Because I know there are others out there that are so much worse off than me. I am not it a wheelchair, I have all my limbs, my sight, I can move, etc. So it makes me stop and think......okay---done ------anybody??? any insights??? Also, I think I am cured?? But does that mean for 5 years only??? Chest xray at 3mo was clear, labs improving, going for 1 yr colonoscopy Sept 15...thanks for your input--sorry so long winded... wanted you to have the full picture..Thanks so much!!