I don't want anymore chemo

I don't want mop up 5fu (what a name) chemo. I'm sorry if this is a long post but I feel I need to explain why and start at the beginning.

 

Last Feburary I started a Xeloda/Radiation treatment regime. They told me there "might be some irritation" toward the end. By irritation they must have meant excrutiating pain every time you need to use the the bathroom. I even ended up with blood in my urine so that hurt too, like peeing razor blades. They were not honest with me about the toll treatment would take.

 

Then on July first it was time for surgery. I had been told that four to six weeks after surgery I would be all healed up. I believed them... Upon waking up from surgery I noted that my glasses were no longer helping me. I thought it was the drugs but weeks after my sight was still bad. I finally went to see an eye doctor and was told my script had changed and on top of that I now needed bifocals. I told the surgeon and the oncologist who both told me vision changes happen when your forty-two and middle aged. Over night? I think not. I looked it up and found that it may have been the epidural they had me on to lesson the amount of pain meds. The FDA says epidurals can cause eye damage and I was connected to a machine that left me numb from the waist down for two days. Since the surgery my taste buds have changed and nothing tastes good anymore and I'm still not fully healed.

I noticed when I was released from the hospital that I didn't feel well. This feeling got worse and worse. I became short of breath eventually and on July forteenth at four in the morning I got out of the recliner I was sleeping in (as getting in to bed was impossible) to use the bathroom. As I walked back toward the recliner after using the toilet graviety got heavy, the room began to spin and I woke up ten minutes later on the living room floor. I called for my girlfriend who called 911. I was rushed to the hospital with a blood clot in an artery in my lung. I nearly died. By the end they could get no blood pressure reading and I was begging them to do something because I couldn't breathe. My face turned purple and though I know there are a lot of different interpritations as to what a near death experience is all I will say is that I had one. I was closing my eyes for the final time when the doctor rushed in, said he knew what was wrong wheeled me into some other room, cut a hole in my neck, shoved a tube down it and sprayed my lungs with blood thinners. I spent three days in ICU and another three in a regular room before being released to go home.

When I went in for surgery I was told that the flap they put on my butt after removing my colon would heal quickly. To this day it still hurts and it leaks fluid. At one point the pain got excrutiating but no one wanted to prescribe pain meds because "opioid crisis" and instead they set up an appointment with a pain center. That appointment was two weeks away. When I finally got there, there were signs on the wall stating that they did random drug testing and pill counts. I was forced to pee in a cup to test for street drugs and they said they would give me no opioids for two weeks until the results came back. Funny but every drug test I've ever taken for work came back in twenty-four to forty-eight hours. Then he prescribed Gabapentin which after researching on the net I refused to take. Thankfully the pain eaised off and I don't need pain meds, though my butt still leaks constantly.

I am still not fully healed. My stamina is still kind of crappy and thanks to the blood clot I now stick myself with Lovenox shots twice a day. My stomach is covered in bruises as a result. That hasen't stopped them from wanting to put that port in and start 5fu. They say it should go fine.... That's what they said about the radiation and about the surgery. Fool me once shame on you... How many side effects will I get or will I be really unlucky and be one of the people it kills? Also nice to know is that if I am that unlucky they will put down that I died of cancer and not from chemo. This makes me wonder just how many of us die from the chemo. When I said I didn't want the chemo they threatened me. The cancer center has been paying for a COBRA policy so I can keep my insurance and they said they will stop paying for it. They will leave a cancer patient uninsured, nice. Then they told me all the horror stories about what happens if it comes back. No need to tell me. My mother had colon cancer and it came back. I know exactly what happens.

The bottom line is I feel they have no idea what they're doing. They open up a medical journal and what ever the latest treatment is that's the one they roll with. If those journals said cancer treatement was now standing naked on a roof top I would be butt naked standing on the the roof of the hospital right now. I also think they downplay the seriousness of the chemo and it's side effects.  It's always rosey when they tell it. Treatment is cookie cutter one size fits all and there are no alternatives to try. Don't even get me started on the financial side of things either. Lots and lots of money being made by that hospital. I spend a lot of time there these days and have run into the CEO's and what not who run it. They want for nothing.

I'm fed up and I want my life back. I want to  go to the movies again and take long drives without being in pain. I want to heal up and be healthy and if that ends up shortening my life is that so bad? The chemo might not work anyway and I'm not sure if I should believe there statistics on it.