Cancer

This is my second time posting this cause the first time my post was removed for accidentally using the wrong flair. This is my first time posting in this group.

For context, I’m almost 26, with AuDHD and right side cerebral palsy. I live in the Twin Cities in Minnesota. I live semi-independently (half the week in a group home style apartment building and half the week at home with my mom), and I go to “school” (a day program) 4-5 days a week.

After months of symptoms I was finally diagnosed with high risk acute leukemia. My oncologist (who understands my needs) says my treatment will be double digit rounds of high dose chemotherapy (on a 2 week on 1 week of schedule, with the first week being inpatient, 2nd week outpatient at clinic, and the 3rd week is a break), as well as immunotherapy/chemo-immunotherapy, and possibly Car-T Cell Therapy.

I feel like i’m prepared for the emotional side of cancer (though i’m really probably not, but i’m trying to convince myself), and kind of know what’s coming for the physical side with hair loss and all of that, but where i’m struggling is more the sensory side.

I did ask them to put my central line in the right side of my chest (since because of the CP I have less feeling on that side), which is the line that will be used for treatment, and they marked it in my chart for when they do that surgery in a few days, but idk about anything else. for example: what should i bring for hospital stays or long days at clinic, other sensory stuff with cancer (such as my hair falling out), how to talk to strange doctors/nurses about my cancer and treatment, and what to talk about with them in regards to my disabilities.

If anyone else has experienced this (not just with leukemia but any kind of cancer) or has any good advice, I’ll take all of it.