This new format is just horrible. Meanwhile long term neuropathy

Helen321

Hi all, this is for the long haulers who are now cancer free but have residual problems. I did Xeloda, oxiplatin and radiation. My doctor screwed up my apr surgery on so many levels. My body's a hot mess. I need to help myself figure out what's what. These are the problems I have...anyone else relate and get an explanation? I need to help myself find solutions... notes: anus removal and permanent ostomy

Extreme pain when I sit on anything hard, 10 on Pain scale. 7 on softer objects. 2 to 3 all day every day

Pain internally at the surgery site

Pain in my intestines

I keep falling to the right

My right leg is showing signs of nerve damage. Getting an emg

My right hip is painful to the touch all the time

My right eye is blurry. No one can find anything wrong with it. Other than its just ridiculously blurry

My face skin has deteriorated only on the right side

Dermatologists say rosacia but I can't even go outside for 5 minutes without bright red blotches across my face and puffy eyes and pantaloons(?) Or pantoons (?)..I think pantaloons are pants lol ..anyway big old puffy red skin near the cheek bones. Even with sun block. Nothing works. It's bad.

Numb toes. Cramping so bad I'm screaming and running to a hot bathtub

Cramping calves and leg muscles

Severe cramping pain in my esophagus if I consider drinking anything cold.

CCramping in the side of my neck at random times

Dizziness

Ringing ears

Shaky hands.

Severely cramping fingers

Zero pelvic floor muscle. I pee on myself A LOT

What kinds of things do you experience?

Thanks for the replies. I'm not on here much bc this format is just terrible. No doubt designed by a young person with no clue that these boards are full of old people. But I really need to help myself figure out what's what on my body.

I have a hernia the size of a melon at my stioma site. My doctor's did not provide me with nearly enough info about the drugs they gave me, the side effects or even that I could get a hernia at the surgery site. But then...I never approved this surgery.

beaumontdave

https://csn.cancer.org/discussion/326220/this-new-format-is-just-horrible-meanwhile-long-term-neuropathy

Helen, I'm sorry you bear all those effects from treatment, it sounds difficult to deal with. The only similar after issue I had, was the hernia. Mine was very large, on the right side where the liver is. They put a very large mesh device over the area, and excised the extra skin, including my bellybutton. I was warned not to push my luck, until it healed, which I heeded, but every time I avoid activity, I slip a bit more into that old man body, I intended to resist. The long expected need for ankle replacements came up hard as soon as abdomen healed, and now what were once easy things, became harder, like mobility. Still, it feels like small stuff when I read what others, like you, are dealing with. The nerve and associated pain on various places on your right side, is curious as well as miserable sounding, I wonder what they specifically damaged. They cut my nerve branch on the right side, that part of the 'six-pack' muscles, but at least other muscles can compensate. It's sad that many, like myself can't afford a trainer/PT for the after effects on the body from this crap. It's sadder still that the damage you received can't be mitigated better, to improve your QOL. Hang in there....................................Dave

SnapDragon2

Horrible is right. I can't imagine what you are going thru daily.

When did these effects start showing up?

Hve you thought of seeing a new doctor? Not sure if its normal to not be able to sit without pain.

Also, have you had bloodwork done that includes vitamins and minerals for your other side effects?