How my Autism affects my Cancer Treatment: Part 3
But I’m a coward and I don’t like pain or violence. Our best chef’s knife needs sharpening and might not cut well. I open the bathroom window and start in on the packet of Marlboro Blue Ice. Notifications from family and friends wishing me well for the appointment or asking how it went, fill my phone screen. I remember the business card of the oncological social worker stapled to the “welcome” folder I received at the clinic. I had seen her with my partner three years ago right after he received his diagnosis of Stage IIIC melanoma, when all was fresh and shocking. She told him to put into effect all the preparations for death and then forget about them. It resonated with my interest in Swedish Death Cleaning. I phoned her and made an appointment for the next Monday. Making the appointment seemed better than the alternatives. I must have crawled into bed at some stage. I must have got up again, because I smoked three quarters of the packet that evening sitting on the verandah, texting my dear ones and drinking wine with both our dogs lying next to me. In fact our St Bernard insisted on being in the bathroom with me while I smoked and wept and called. The dog is big and the bathroom small, but I appreciated his presence so much.
I explained to my partner that I’d had a meltdown and vowed he would never have to deal with it again. I know he will never have to deal with it again, because I won’t take him with me to any further appointments. My partner is quick to forgive and quicker to forget, but I insisted on at least several more days of penance and self-flagellation. He thought seeing the social worker was a good choice. Meanwhile I would fill the prescription for the oestrogen blocker and the tests were on track. I made peace with seeing a new oncologist next year for the results.
Two days later I drove back to the neighbouring town to have coffee with a favourite cousin, do some shopping, and get the pills. The oncologist had been adamant I should start hormone therapy immediately. She said the pills would cost only around R200-R300 and I should not wait for my oncology benefit to kick in, but purchase using cash right away.
It was a shock when the pharmacist told me my medical aid refused to pay for the tablets. At R1300, the cost was much higher than anticipated and I had instructed her to put it on my oncology benefit as I already had confirmation of my registration. She handed me the phone. Yes, I was registered, but all prescriptions had to be authorised by the medical aid first. This would take five working days, no exceptions. The tears came without me wanting to cry. The pharmacist was very kind. I have known her for about a decade. She advocated for speedy authorisation and gave me five tablets to last until next week. Her assistant brought a tissue for my mascara-smeared eyes. For once I was grateful for the Covid mask and nobody else saw my tears. Their kindness carried me through the mall to where I could wipe my face and recover.
Meanwhile I had been having an email conversation with the medical secretary at the clinic. I asked for the form I’d failed to sign two days before to be sent to the practice where I would see the social worker on Monday. The secretary in cursive:
If you are going to see Dr Pienaar she will let you sign for permission. Each doctor lets their own patients sign for permission.
“The tests were about be done and I was to see Dr Pienaar for the results. I cannot wait to see her to request the tests. Dr du Toit instructed on Wednesday that the tests would be done, only I didn’t sign the form. Louis returned the form to you. We cannot wait another month to sign the form.”
I discussed your request with Dr du Toit. Dr du Toit said your consultation with her was never finished — you left the consultation room. If you are going to see Dr Pienaar she will request all the necessary tests. Dr du Toit will discuss this with Dr Pienaar.
I freaked out when I read this. I phoned my partner, who told me that he had signed the form, with the oncologist’s permission, before handing it back in order for the tests to go ahead without delay. Then he’d relayed the confirmation to me in the car without mentioning he’d signed the form. He was as surprised as I was at the turn-about. He asked if I wanted him to sort it out. Honestly, the temptation was there to hand everything over to someone else. But I still see myself as a strong, independent woman so I drove to the clinic and explained the whole thing, and that I don’t know what changed the oncologist’s mind between what she told my partner on Wednesday and now refusing to initiate the tests. I reminded the secretary that the other oncologist was going on leave in January and who knows when I would get an appointment and to have to start all over again was unfair and not what I’d been told would happen. The secretary said she’d send another email. The clinic’s oncologist was on leave until the middle of next week and probably wouldn’t answer until then. Everything, but everything, had changed again. Another how long of waiting, of not knowing. I left. This time I doubled over right outside the clinic door. I howled.
If at this stage you think I could have controlled what happened by willpower I have to disappoint you. I howled, I sobbed, I drew deep breaths without getting enough air. I hit my head against the wall. Hard. Again. It brought relief so I did it again and again and again. People walking past asked who “she” was and what was wrong with her. They stopped and watched. Someone touched my arm and asked me to come inside. I screamed as loud as I could. Again. Then I screamed not to touch me. I managed to get to my feet and pinch my handbag under my shoulder and waggle off to my car, where I locked the doors and wept for a while with the guy in the next car staring at me. It was simultaneously humiliating and I didn’t give a shit. If anybody had approached me then I would have hit them.
In time I started the car and crawled out of the parking space. I drove very, very slowly. I bought another packet of cigarettes. My car has a lighter. I smoked a few while driving home at a snail’s pace. I crawled into bed. I still have not told my partner about the second meltdown.
I wrote yesterday afternoon and the whole of today with many smoke breaks between paragraphs. I write for my survival. And I am finally ready to admit that autism is a disability. It has never felt like one before. Perhaps I should not write about how my autism affects my cancer treatment, but about how the medical profession’s refusal to accommodate my disability affects the standard of care I receive. It’s like I went to them asking for a ramp for my wheelchair and they refused to even look at the request so I had a spectacular fall right outside the clinic.
Tomorrow I drive the two hours into the city see the oncological social worker. I have some hope that she might listen and be able to help me reach the other practitioners. At this stage I no longer care about an oncologist’s credentials or a surgeon’s experience — I only want them to have the time and inclination to extend the ramp I need.
