Em Meades shares her wild experiences with chemotherapy, including ketamine hallucinations, and being held hostage by “Disney kids” in part two of her story about living with a blood cancer called acute myeloid leukaemia.
Chemo, man. Treatment is wild. I do not wish it on anyone. I’d rather go through it again myself than watch someone I love or care about have to go through it.
There are things I didn’t know or expect. Everyone knows you lose your hair, but I didn’t expect to lose all the skin on my hands and feet, or all my fingernails and toenails. I was unprepared for how you lose your hair. The hair on my head turned into a weird, wiry dolls’ hair texture and started to mat and clump before falling out. I forced my partner Ruth and my best friend, Penny, to shave it off for me.
I also became intimately entwined with a sick bag – I always had one close by. They were even stacked next to the toilet at all times. I couldn’t eat for weeks and my nutrition was through an intravenous line. When I could eat again, everything tasted salty, like it had been marinated in the ocean. The pain from the ulcers in my mouth, throat and gut also made me feel miserable.
Medications, hallucinations and being held hostage
I wasn’t palliative, but the palliative care team got involved because they are the experts at severe symptom management. I was on all sorts of drugs to manage my nausea and vomiting. The ulcers in my mouth were causing so much pain they had me rinsing my mouth out twice a day with cocaine.
I had a ketamine pump straight into my tummy. This is how we learned ketamine and I aren’t a vibe, and I understand what it feels like to be delusional. Although I logically know (now) that the Disney kids were not holding me hostage one morning for pizza, I still have a very clear memory of it actually occurring, along with the kids who were driving their cars into my room the night before.
I’d told my nurse, the wonderful Jo, about the Disney kids and my bemusement at their demands, and was curled up on my bed texting Ruth and Penny about how I was being held hostage.
Needless to say, once the Disney kids appeared and I told the nurses about them, the ketamine was stopped and swapped out for a higher dose of morphine.
Bedside emergencies and holidays in hospital
The medical emergency team (MET) (a group of specialist doctors and nurses who respond to emergencies within the hospital) were regularly called to my bedside. I became very aware of how I felt right before a nurse would make the call.
“I’m just gonna do your obs,” a nurse would say and I’d retaliate with, “I don’t have high hopes.”
One day they did five or six MET calls just in the daylight hours. By the fourth time, Jodie, another of my favourite nurses, looked at me and said, “Em, I’m gonna have to call another one”.
I grumpily retaliated with, “Fine! But I’m going to the toilet while you do.” I had learnt they went on for too long and wasn’t going to wait around for them to finish poking, prodding and staring at me before I could go.
“That’s fine,” she shot back, “as long as you know everyone will be in here when you get out.”
And they were. But I felt like I’d won a round against the MET call gods (much to Dr Liam’s exasperation).
I spent every holiday from November to May in hospital, except for New Years’ Eve – I spent that night sound asleep after watching an episode of Outlander on the couch with Ruth. It was the first time I’d been home since being diagnosed.
Christmas, Valentine’s Day, my birthday and Easter were all spent on the ward, but they were not terrible times. My hilarious and wonderful sister decorated my room for Christmas, and Penny came and shared Christmas lunch with me. On my birthday, Maddy and Casey, two of the nurses, burst into the room I was sharing and announced with glee they had organised a single room for me as a birthday present. Easter included visits from Ruth and our young person. The nurses for all those days and moments were caring and warm, and did their best to normalise the fact I was feverish, unable to eat and feeling crummy.
Thanks to the incredible ongoing support from our community, the Leukaemia Foundation has a team of cancer care professionals on hand across Australia to help with practical and emotional support.
This is an excerpt from Em’s personal blog and was initially published on 16 November 2024. Read part three of her story.
Your donation could help our cancer care team support more patients and carers. Find out more.
