Slipping away

The last week has thrown up increasing challenges.

As probably the best diagnostic indicators of where Judy is at right now, it's been three consecutive days without red lipstick, plus we weren't able go to our beloved every-Friday Italian on Friday night.

A song loved by me and many, Slipping Away, was written and released around a decade or so ago by Moby, A.K.A. Richard Hall. It's a song that carries a pretty clear and simple message, and is sung by Moby with wonderful warmth and passion and agony and earnest combined: "Hold on to people, they're slipping away."

The last week I haven't been able to get that song out of my head.

Judy's strength has been declining. She can't walk. She can't shuffle. Her arms can't sit her up. It's hard for her to lean forward. She can't stand without her knees buckling one way and her beautiful arse going the other. Taking pills is a challenge. Sitting straight is a challenge. Coordinating getting a glass to her lips is a challenge, even if charged with Kooyong Chardonnay.

When living day-to-day with metastatic cancer, it's easy to not let small new things get in the way of being able to cope. The little things on their own are easy.

Little things like one leg Judy describes as her "gammy" one. This leg refuses to do exactly what she wants it to do, because cancer in her central nervous system has messed up the lines of communication. Being us, we've had fun moments at the expense of gammy leg, with Jude chiding herself with a firm "Stupid woman!" with a laugh when standing on her own foot repeatedly, or an up-looking doe eyed declaration to me, arms around neck, that the fancy footwork is "a gift".

We laugh, and handle it by "cuddle walking".

"Ah, fuck it. Standing on myself again. Stupid woman."
- Judy

And other little things like an increase in missed toilet events, are easily sorted with pull-up absorbent "fancy pants" as we call them.

Or not being able to stand for long enough at the basin to brush her teeth, which we easily handle by employing two metal kitchen bowls in the bathroom – one with fresh water, the other a spittoon – and combine that with a sit on the dunny or a relax in her wheelchair.

Sorted.

As cancer slowly dishes up more and more, Judy and I have just found new ways to cope, in an evolution of sorts. The only real impediment to any of it is my strength and the ever increasing pain in my back, but we can even cope with that by optimising and combining multiple daily routine tasks to lower the physical load on me.

By way of example, having a shower by manoeuvring her onto a perforated shower chair, then presenting her two metal bowls and a fully loaded toothbrush.

Another example, dressing her top half only while seated in the wheelchair in the bedroom, pulling fancy pants and trousers only up to the knees, adding footwear, then wheeling to the couch and completing the job there of pants up during transfer, and then on to makeup and lippy. That one won't work if we have guests, obviously.

The slow degradation of more and more, though, and the gammy leg now going full retard, and Jude listing to port and almost falling off while sat on the dunny, and confusion over which bowl is fresh, and which is spittoon, have crept together to add up to a big challenge.

We thought it was bad before, but this week this cancer shit has been just plain nasty.

And I'm honestly not sure how I'm going to cope keeping her comfy and still at home if this continues.

I need another two arms. Maybe three. And a new back.

What is surprising is that the escalation of all the little things happened in just the last week. What was manageable over many, many months, now suddenly is barely so. How could all the minutiae get the upper hand so quickly?

A few days ago, Judy woke with pain in her lower back, despite her quality fentanyl pain patch normally coping. "Ow, ow ow, oow! My poor bottom!" Starting the day needed a couple of oxycodone on top before she could rise to sitting.

Then we wheeled in to the toilet, manhandled to the shower, and then her neck muscles stopped working.

I quickly dried her off with her head slumped back, then cradling her little hairless head like a newborn baby, wheeled the chair one handed to the bedroom to laboriously wrangle on pyjamas that I'd thankfully already hunted up.

The experience was horrifying. Brilliantly, her neck resumed operation by itself by the end of the day.

Like the Princess Droopy Loop event back in July, I hope she can pull out of this recent nastiness, and get a little better, not even worse. I hope something can pull the brakes on where things are heading, as whole-body and direct injection head chemo seems to just be slowing things down, and not having a halting or reversal impact.

The other day, Dr Rob and I discussed messing with Judy's daily dexamethasone dose to see if that will have any positive impact. Taking too much is not good, but particularly with Judy's stage and type of cancer, taking too little can also not be good.

Dexamethasone is a corticosteroid that can reduce inflammation. It does this by preventing infection fighting substances in the body from being released and causing swelling. With cancer, its anti-inflammatory properties are used to decrease the swelling around tumours, and with tumours in the spine, brain and bone, this can decrease pressure on nerve endings, caused by the body's own infection fighting actions. That can relieve pain and also do good things for other symptoms that are caused by nerve pressure, like gammy legs.

Getting dosage right is a trial and error affair, so for a few days we'll quadruple her dose and see what happens. If she shows improvement, then we'll back off the dose a bit and then again see what happens.

Early signs today are that we may be on to a winner by upping the steroids.

My fingers are crossed that with some tweaking we can have Princess Red Lips back again, and also have her remain at home, here comfy with me.