msjessica's Diaryland Diary

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A jumble of Eurovision songs

Since then, since last time.... she couldn’t eat, so we thought she would never eat again.

The social worker who came to fill out the Advanced Medical Directive with us (us being Mum, my sister and I, with Mums partner somewhere in the house refusing to take part in something to him so “morbid”, to us so liberating, empowering, and crucial) had offered up to us “would you like to know what to expect?”. Although not without some nervous hesitation we almost in unison replied “Yes.”.

She told us signs to look for. Lack of appetite, lack of mobility or will of movement, followed by slow breathing, undulating consciousness. That there would be days like this, followed by days not like this, but eventually there would be a few days like this in a row and then different days than what we’d ever known altogether.

So after Mum was so sick that one day and she could not eat, we began to think that this was it, she wouldn’t eat solid food again and we might have her for another week, two at a stretch. But overtime she was able to take solid food again, and then more and more and more.

Her oncologist reported that her blood test shows no significant progression.

This should be good news, but it’s staggering. For all of us. It takes so much to prepare for her to die. And what must it be like for her, to go through all that, make her peace with it, likely start to welcome it as a release, to be told “there’s a hold up in front of us, we’ll be parked at this station for awhile longer”.

She is not a bucket list, jumping out of planes kind of lady. She is sitting either in bed or in an electrically movable chair, noticing her muscles being eaten away by her pain medication and watching well meaning family members and friends and old colleagues move around her sometimes like she’s already dead, or at least just smelling of death. We all know what’s coming and go to such measures to have all these times together yet we never talk about the real fact of it or give it its respect. But in part this is perfectly respectful of her as she has always been one who struggled with hard truths and did better with face platitudes and face value. I love her deeply, there are so many contradictions to her, as with anyone.

After the news settled that things were slow and not progressing, I booked a flight home for a week, started planning some other interstate trips for concerts I have tickets to. I write the words “today was a happy day”.

But then.


“Oh my lord. So poor Mum sat on the toilet for 50 minutes, feeling nauseous and constipated - what a horrible combination, for anyone. She has this big hernia so naturally any issue with her bowels triggers worry about that (ie. Bowel obstruction from the hernia). His helpful advice? While roasting some garlic loaf (sending out all sorts of aromas - what more could you want while nauseous!) “just forget about it darl and go back to bed”. 🤔👌👍good on you mate, great approach, why didn’t anyone think of that before???? Ugh 🙄 that was at about the 30 minute mark. Around 45mins in I went back down and, I guess it’s similar advice but with a softer approach, suggested as it had been 45 minutes of struggle, maybe we should try something different like just standing up and walking a couple of steps and maybe it would lead to bed and maybe by the time she got there she might feel able to at least sit on the bed for a bit and give her body a rest - her insides obviously weren’t playing game so let’s call half time. She agreed and was just about to start getting up and He comes out with a pill packet saying “these are laxatives, you should be taking these everyday”..... I take the packet and decide to google them - he’s handed me fucking blood pressure medication! For people with high blood pressure. Mum has LOW blood pressure, and has had forever pretty much, long before all this stuff. Imagine if I wasn’t here and this had happened and he’d decided she should be taking that every day?! Fucccck! Also he’s actually been complaining of tiredness and dizziness lately, which from what I read can be side effects of that stuff so maybe HE is taking it every day thinking it’s laxatives? Sorry for all the poo talk, but this is my reality haha - I literally just helped my mum wash shit off her fingernails in a plastic bucket with warm water because she was too weak to make it to the bathroom sink. I couldn’t be a nurse but it’s amazing what you just adapt to for the people you love.”

-


It’s yet to be seen what else happens tonight. Hopefully it was just a blip on the radar, she hasn’t been having her prune juice lately as for a week or two she wasn’t really eating. Hopefully it’s not an obstructed bowel. Hopefully it’s not her tumors. Who knows. This shit is so fucking unpredictable and so up and down it’s impossible to make plans or trust in any feeling.

I didn’t think I had anything to say tonight but have gained a lot from my previous notes during this time, and feel one day it will be very important to have some documentation about this time. It’s fucking hard, but it’s also beautiful and the most connected, natural and at home I’ve felt in many years.

1:43 a.m. - 2018-05-16

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