No one really understands

I'm going to post this here and I fully expect it to be taken down. It's taboo and it's ignored accordingly.

I haven't posted here in a very long time. In 2019 at age forty-two I was diagnosed with stage three rectal cancer. No one asked me what I wanted, I was given no options. It was just "Here's what we're going to do. Where going to irradiate you, have you swallow poison pills called Xeloda and then when you really feel like crap we're going to cut you open, pull out the cancer and give you a permanent colostomy. These are your orders, any questions?

So I did what I was told and then the day of the surgery came and it did not go well. I woke up to find my lens prescription had changed and I now needed new glasses. The only thing I could find about this was the possibility of a stroke under anesthesia. I was in horrid pain, the plan to use a robot to remove the cancer failed and I have a scar that looks like someone used a machete to cut a hole and pull the cancer out by hand. It's massive. They kept me in the hospital for five days during which they rolled me over in my bed and the pain was so bad that I screamed each time. On day five there was a temporary issue with my insurance and not wanting to risk not being paid they discharged me. I could barely walk. I had trouble making it from my living room to the bathroom ten feet away. I had issues with my bladder and going to the bathroom. I had no idea how to deal with a colostomy because a nurse was supposed to come to my apartment and show me but due to the insurance issue they refused to send a nurse out. I was on my own.

Two weeks later while trying to reach the bathroom on my own for the first time I collapsed. My girlfriend called 911 and I was rushed to the ER where I nearly died from a blood clot in my lungs. They cut a hole in my neck, put a tube down my throat and into my lungs and sprayed blood thinners on it. I was in the ICU for a week and when I was sent to a regular room afterward my surgeon showed up at seven in the morning, woke me up and blamed me for the clot. I then spent another seven days in a regular hospital room. Still no one would show me how to deal with my ostomy.

I survived that ordeal, went through "mop up" chemo and dealt with the after effects of everything. I never regained full control of my bladder, I had to get new glasses and it was only when they put eye drops to dilate my pupils that my retinas began opening and closing like they should again giving me access to night vision.

The poison and radiation aged me about twenty years in the span of less than a year. This lead to further health issues. In 2021 I was diagnosed with type 2 diabetes and gave up sugar and all the tasty foods I loved. The poison also caused the tooth decay I could not afford to fix to spread faster and I eventually lost all my upper teeth. I have a piece of plastic I made myself in there so I can chew somewhat and speak normally. Eventually that will stop working though as I need the back two teeth to anchor it to and it's only a matter of time before they break like the rest. I am on disability and have medicare which won't pay a dime for dental. I'm on my own.

In 2022 a hernia formed around the ostomy and I had to go back in for more surgery. I found a different surgeon this time and it was not as difficult but I now have a mesh in my stomach around the ostomy to hold it in place.

In December I went for a routine visit to my doctor and told her I was loosing feeling in my feet and hands. She did blood work and it turned out I was extremely iron deficient. She scheduled me for two iron infusions and an endoscopy which turned up an ulcer. I still haven't gotten the results of the biopsy yet, they are testing it for Celiac Disease.

I'm on 100 different medications for a 100 different issues. When does it stop being science and start being necromancy? I can no longer work and with the current political climate I wonder if they will take my SSDI away. Going out in public is an issue as well. Though I do go out it's always a gamble of what will my ostomy do while I'm out, planning for it and adjusting intake the day or two before going out. However those around me often say "But your alive!" This is not life. This is undeath. The undeath is made worse by the fact that once you can no longer work society writes you off and throws you in the trash can. I worked sixty hours a week before cancer but once I couldn't do that anymore it didn't matter. I was now a drain on society.

Every time I go to the doctor it's all about making sure my heart keeps beating. They smile when the latest cancer screening comes back clean and I smile back, the fakest smile ever and then I go home and cry because I have to continue to walk this earth. I've been through cancer, that pain is nothing compared to the emotional torment. When you go through enough physical pain it eventually becomes background noise that you tune out. I would rather die of cancer than live like this but that's taboo. We don't talk like that, it's unacceptable. No doubt someone would want to add a host of mental health medications on top of the blood thinners, metformin, astrovastatin, daily vitamins, iron infusions and whatever they are about to put me on to heal the ulcer. No, thank you. I'll pass.

Christy