How my Autism affects my Cancer Treatment: Part 2
[It will make more sense if you read Part 1 first, I promise.]
Four weeks after diagnosis and I’m still without treatment and not knowing what will happen next, or when. I may or may not be referred to a third oncologist and have to start from scratch. I don’t know. And therein lies the problem. Like other autists I get easily and instantly overwhelmed by Not Knowing. But it’s worse than that: my request for accommodations for my autism was refused outright and I find myself ejected from oncological care — a terrible place to be when you have an exceptionally fast-growing tumour thriving in your chest.
[I will be having cigarette breaks throughout the writing of this piece. This is one of them.]
I feel overwhelmed; have done so for the last four days. The four empty weeks between diagnosis and finally getting to see an oncologist were fraught with administrative difficulties. My gynaecologist practices in the big city where I lived until eight years ago. I liked her too much to search for a new gynae when I moved to the country. She refers patients to a hospital in the city’s southern suburbs near her practice, which would be impractical for me to attend. I nominated a surgeon at a popular practice in the somewhat closer northern suburbs. This surgeon passed me onto the oncologist at their practice without explanation. Dr Google was the only medical practitioner who had the time to tell me why. Lack of planning on the part of the oncologist saw me miss my appointment with him and go back onto the waiting list for another appointment. Instead of entering a second waiting period to see the disorganised oncologist I found a small cancer clinic in a neighbouring town and managed, with considerable administrave strain, to secure an appointment with their (female) oncologist. The clinic was much closer and more convenient. I believed I would end up seeing the right person in the right place for me even if it meant an extra fourteen days spent in limbo.
My anxiety reached a peak on the morning of the appointment. My partner took time off work and drove the forty-five minutes to our neighbouring town. We struggled to locate the clinic — Google Maps put it inside the Emergency Centre of the hospital next door — and once we did we grabbed an Americano each from the hospital coffee shop, which we sipped from paper cups on the short walk back to the clinic. The waiting room was tiny and crowded and they were running behind schedule. The oncologist has impeccable credentials and a formidable reputation in her field. Her expertise showed in her extensive explanations of the terminology, staging coding and treatment options. I learnt fascinating new things about genetic screening and what it can tell you. Of course the questions included the usual enquiry into family history I have grown so weary of. She assured me that there were lots of adopted children in her family and that someone, a sister, I can’t remember who, adopted a child.
“It’s a huge thing for a woman to raise such an adopted child.”
“What the fuck?” went through my mind, why would she tell me that it was a big effort for my mother to raise me? But I know people say whatever comes to mind at the mention of adoption, without thinking of the effect on the adoptee. I wish I could stop people from, upon hearing I’m adopted, offering input on or a value judgement of the institution. Just say nothing. I don’t want to hear if you think adoption is A Good Thing. I don’t want your opinion on my core history at all. It rattled me, this strange and unexpected pronouncement, but, importantly, even my partner thought I recovered well. More questions, further explication, a rapidly rushing stream of information, a short physical exam, more words, many many many words. My ability to process was stretched, but I followed most of the commentary and wrote down a few key terms. I received a printed diagnosis with all the coding and planned tests straightaway, a gesture I appreciated greatly.
My hormone-receptive breast cancer is no slouch: in a model where 25% is considered worrying mine has a replication rate of 80%. I would never have been satisfied with such a low score, hahaha. When I lift my left arm in front of the mirror that breast has a slightly scooped line from shoulder to nipple. If I turn around and lift my right arm there’s a small mountain in the same spot. Indeed, it’s growing at phenomenal speed. My treatment was explained as starting with hormone therapy: since we know the cancer feasts on oestrogen, starving it of oestrogen should make the tumour shrink. This could mean the difference between a lumpectomy and removing the entire breast. I will have two types of genetic screening: one test to determine whether chemotherapy would be beneficial or hormone therapy alone sufficient and another to determine if there were a genetic cause, i.e. the BRCA gene. In case of the latter a total mastectomy becomes necessary. The existing biopsy tissue is utilised for one test and blood drawn for the other. Since it’s nearly Christmas the results will be available early next year. Meanwhile I am to stop my contraceptive pill and start taking an anti-estrogen tablet, which should launch me into instantaneous menopause in about six weeks’ time. Of course there would be no HRT to relieve the symptoms, the only thing I’d be allowed is sage.
By this stage of the appointment the oncologist was getting rushed and rapidly illustrated the effects of menopause in an unflattering and discouraging manner. It was a lot to get used to. My mind started to balk at the verbal flood, unable to take in any more. She asked if I had any questions left and I finally had the opportunity to ask whether she had read my email asking for accommodations. It was the first time I had shared my diagnosis with a medical service provider and asked to be accommodated:
I would like to inform you early on that I am autistic (ASD Type 1, formerly known as Asperger’s). I don’t do well with last-minute changes of plan […]. If it were at all possible to inform me of changes ahead of time I would appreciate it tremendously. I am also sensitive to loud noises. […] If I could only be warned that a procedure would involve loud noises or be painful I could prepare myself. For example I stuggled to retain consciousness after the biopsy because the doctor “forgot” to warn me of the loud clicking sound each time and I was unable to process it. The biopsy was also very painful, for which I was not prepared. All I’m actually asking for is to be fully informed in order to prepare myself; I am totally capable of doing that.
She had not read the paragraph. I don’t think she looked at my file before the appointment. She didn’t know whether I had been for a CT scan. Only when I told her did she search for the results. No problem with that, except that if the scan was still outstanding the situation with the first oncologist would have been repeated and a third waiting-for-an-appointment hell would have ensued. I get it, these people are busy. So much cancer, so few oncologists.
The appointment system in use at the clinic means I am informed of the time of my appointment as late as the afternoon before. My autistic self would rather drive further in order to secure more predictability and I enquired if appointments at her main practice in the city suburbs were scheduled ahead of time — perhaps I could see her there. She became defensive. If I wanted to see an oncologist “when it suited me" she would refer me to her colleague at one of their other practices, the one my partner visits. I tried to explain that my autism was not “being difficult”. She did not listen, only announced that her brother, an engineer, has Asperger’s “very badly” so she understands everything. By this time I was becoming discouraged and offered feebly that women are different.
I asked if she would read a scholarly article in a British academic journal about accommodations for autistic patients. She said she didn’t have the time. She told me to rather tell her what was in the article. This I could not do. It’s an easy read — took me 30 minutes — but at the end of the overload of information I had just received and the doctor clearly wanting to end the appointment I lost my words. She kept on talking. I did not want everything to change again. I had just invested four weeks’ worth of uncertainty in having this person as my doctor. I had only asked to see her at the city practice to make it more predictable for me. How did we arrive at passing me off onto a third oncologist? I sat holding the printed email in my hands, drawing the fold between my thumb and index finger over and over. She was talking too much, the appointment was over and I did not want to have to go and see a completely new person! I was shattered. Not only did the oncologist of my choice not understand about predictability or familiarity, she didn’t want to understand.
Then it became too much. I ran outside. I hyperventilated through my mask as I blindly stumbled out the gate and down the pavement. I did not know where I was going, only that I had to keep going otherwise I would explode and I did not want to explode. A couple of blocks further I realised I was crying out loud. Groaning, sobbing, wailing, keening, moaning like an animal. I do not know for how long I walked. I blew the snot from my nose and put my mask back on. I wiped my eyes and used the same soaked tissue to blow my nose again. I turned back on my tracks, crossed a busy street, zig-zagged in a different direction. I threw my sodden tissues into a waste bin at a petrol station. I bought a packet of cigarettes at a rundown café, but did not have enough cash on me to add a lighter or a box of matches. I wanted to lie down on the pavement and curl into a ball, but there were people everywhere. I imagined lying down under a tree or hiding behind a car. I stood across the road from the laundry where we’d collected my linen earlier that morning and hoped they couldn’t see me. I started to walk home. I realised I didn’t want to walk 35 kilometres past the seedy area of town. It was hot and I was wearing winter clothes. I thought about walking to the mall for a cup of coffee, but it seemed too far. By this time my partner had phoned nine times. I cannot do phonecalls at the best of times and this was not the best of times. I answered. I told him to go home. I let myself be persuaded to meet him where we had parked that morning. He held me while I shook uncontrollably. I felt ashamed and so far beyond guilty that there was no word for all the guilt I felt. In the car he asked me to sign the permission form for the genetic test. I could not. I felt catatonic. I wanted to cease existing. Dear God, please, just make me not fucking exist, please. He took the paper back to the clinic. He said the doctor says it was okay, they’d do the tests and when it’s time to see an oncologist again she would refer me to her colleague at the other practice. I died inside. I felt dismissed.
My partner went back to work after asking if he should take me home. I refused and he dropped me off where I’d left my car that morning. Driving home I felt excited. I would use the rifle, finally. I had the opportunity now, he wasn’t there, and I knew where the keys to the safe were kept. I just wanted to end the agony. But I shrunk back from the shot, the loudness of it, the chance that it may not kill me, but leave me vegetative. My dad had warned me about unsuccessful suicide after my mom died, before he threatened to do it himself. Knife! Yes, I know to cut along the vein, not across. Would there be enough time to bleed sufficiently before my partner got home from work? I would take the chance. I felt a great release. I could be again. I could be again, because I knew I could choose to cease to be shortly. I could choose what to do. The freedom was exhilirating.
