Autism and Cancer, continued…

My autism is fucking up my cancer treatment again. No, that’s not accurate. The doctor’s failure to accommodate my autism is affecting my cancer treatment. Badly.

Last week’s sonar after four cycles of neoadjuvant chemotherapy showed less shrinkage than the oncologist had measured and I had to wait until my next chemotherapy appointment to see her for more information (nobody can afford four-hour round trips for separate appointments anymore).

Meanwhile I’ve been waiting for a date for said chemotherapy appointment since two Wednesdays ago when I had the last A/C infusion. Each time I phoned the private oncology practice I was told the chemotherapy nurses would let me know when there was a place in the schedule for me. With NO INDICATION of when that could be. Now, I am supposed to get dose-dense chemotherapy. To maintain the two-week cycle the next treatment would have to happen around Wednesday this week.

On Friday I emailed the oncologist about the discrepancy in measurements and the lack of appointment date. This practice had agreed to certain accommodations for my autism, mainly and specifically to take steps to avoid administrative UNCERTAINTY and UNPREDICTABILITY.

I cannot describe to you what "not knowing" does to me. I suspect only another neurodivergent human would understand.

My email ended up being more of a written meltdown and I sobbed about how impossible it was to continue to put poison into my body if it meant having to deal with unchecked unpredictability. She didn’t answer and I was left in ignorance. Various people at the practice told me they had not received the required authorisation from my medical aid and that was the reason for the delay. I had received the notice of authorisation last Monday the 21st already.

"Yes, but it takes longer for the medical aid to send the same authorisation to the practice."

I phoned the medical aid, who confirmed they emailed the authorisation to the practice simultaneously with mine. I shared this with the oncologist’s secretary and hope for feedback tomorrow. Meanwhile the oncologist reacted to my email by suggesting I leave her treatment and find a surgeon to do a lumpectomy right away.

The surgeon I phoned is fully booked until the end of April. Same story as it was in December: they could squeeze me in, but the doctor is going on leave next week, and then there is still a 4 — 7 week wait before surgery. Fuck. It seems like my oncologist would rather get rid of me than address her own failure to provide the accommodations to which she agreed.

I am so very weary of having to educate about autism and self-advocate ad infinitum while few people seem able or even willing to listen/understand/take action. An autistic person is not being "difficult" when they experience a meltdown (hell, it took me a very long time to even stop saying sorry) we are simply easily overwhelmed by unpredictability. Now I sit without treatment again unless I can sort it out myself tomorrow with the person dealing with authorisation and appointments. Nobody else gives a damn. Chronic illness is bad enough without having to fight for access to care on an ongoing basis.