Marking milestones

Without a particular effort to do so, I make mental notes about all sorts of sad anniversaries. Kind of like Facebook’s inbuilt “on this day” function.

First hospital admission

oct2017

08/10/17 from her WeChat moments

07/10/18 Edited from my diary that I hardly write in

One year ago mum went into hospital and it was the beginning of the end but we didn’t know that at the time. It was a weekend and she felt bad going into hospital because she already had an outpatient appointment the following week. I said to her, it’s okay, that’s why people are on call and this is a medical emergency. Stop thinking about hospital expenditure (she was a health economist for 17 years).

ED wasn’t too busy. I helped her to say the “right” words – numbness, weakness, bowel and bladder problems. Medical oncology and radiation oncology were involved straight away. An after hours MRI was done. Soon she had radiotherapy – the consent discussion was that you can either have it and have permanent cord damage, or not have it and have permanent cord damage anyway.

During her hospital stay I asked the team to chart aperients from the start but this was brushed off until her abdomen became distended later on. When the chart for Endone ran out at midnight, she and dad arranged to sneak in supplies from home because the ward nurse and covering doctor sometimes took a few hours to get around to it. I was too embarrassed to do the smuggling in my own hospital.

And with that she was home in a few days, walking unaided. It was like a miracle. They bought her more than a month of relatively normal life. Until it happened again.

Second hospital admission

dec2017

06/12/17 Aug & Dec PET scans

On this day in 2017, she was admitted to hospital for the second time with spinal cord compression.

Mum was interstate at her scheduled PET scan and sarcoma sub-specialist appointment when the numbness returned. So what did they say about this yesterday? I asked, when she presented to ED the morning after they flew back. Oh, I didn’t tell them, she replied with a little, slightly crazy laugh. What? I looked at her incredulously. They’d want me to be admitted and I don’t want to die there.

As farsighted as she was, none of us expected that she wouldn’t be coming home again. If the change between these PET scans happened quickly, the pace picked up even more thereafter. We could touch and feel the subcutaneous nodules grow from pea-sized (on admission) into incredibly large, golfball-sized masses within a few weeks.

I’m glad we’re going away this year, given the many one-year marks that are coming up:

  • Church carolling – We have a video of the church group singing this hymn with her and I haven’t been able to re-watch the video since. I think the words mean something deeper when you’re dying: “虽然我的肉体和我的心肠渐渐的衰退,但是神是我心里的力量,是我的福份直到永远”
  • Christmas – Mmm delicious hospital food… turkey? Jolly trolley? (Daily alcohol was offered to palliative patients and family members!)
  • End of year thanksgiving – I was so upset at the combined cell group thanksgiving last year because all I could hear was people being “blessed” with a smooth-sailing life.
  • New years – Dad didn’t think C needed to cut her trip short but mum and I insisted. So we got her back in record time and did a NYE countdown together with sparklers. We’ve taken thousands of photos, all across the world, but these would be the last ones we’d have with the four of us together. Mum dressed up and put on a headpiece and fake fringe. She looked okay propped up with pillows in her hospital bed but was actually barely able to sit up due to paralysis.
  • Mum’s birthday – She wanted me to organise a “big one” and we did, cramming in more than 30 people into her hospice room. We arranged for her three siblings from China and US to come and surprise her. She used all of her remaining energy at her party and that night was the last time we saw her awake and conscious.
  • And… her death day – two days later.
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