Palliative care carries with it an almighty stigma of all kinds of shit that you don't want to be in, especially if you're a relatively young spunk.
The last time Judy was in hospital, Dr Rob referred her to the hospital palliative care team.
He didn't tell us that he'd done so, but it became quickly apparent when she was repeatedly visited bedside, and introduced to different doctors and nurses from that team, seemingly every other day.
Palliative care carries with it an almighty stigma of all kinds of shit that you don't want to be in, especially when you're a relatively young spunk, so both Judy and I were almost relieved when each of these visitors departed.
It was a bit of a shock to have Team Palliative engaged, seemingly in a flurry.
In case the repeat visits alone weren't unsettling enough, as she was leaving hospital Judy was gifted an emergency pack of injectable drugs to take home and put in the cupboard ("just in case a doctor or nurse needs them, dear"). It contains lovely stuff like maxalon, midazolam and morphine.
With all the drugs starting with the letter "M", I'm going to call it her pack of M&M's®.
We don't inject anything, though. The doctor or nurse to use them if needed is intended to be someone from palliative care, as those folks sensibly don't carry around any serious drugs with them. Plus patients in their care have differing conditions, so emergency packs vary greatly, and having a handy grab-bag of the likely right stuff right there is the aim.
For Judy, the maxalon is for serious nausea, the midazolam is for serious sedation, and the morphine is for serious pain.
"Did I miss a memo? It's like someone forgot to tell me something."
I can't get that pack of M&M's out of my head. I kept telling myself at the time that someone's jumped the gun. After all, Judy hasn't been that sick. She's got a big red lipsticked smile, an almost permanently happy face, a wicked laugh, and some cancer that Dr Rob and friends are doing a wonderful job of managing.
Stage four cancer, though. She is quite sick. And, I admit recently had some tubes fed through her beautiful brain to aid the fight.
Living a normal life with cancer is hard to do, as it rarely leaves your thoughts. But as living in its shadow continues, you do get used to living that abnormal life. You get used to rolling with the punches, and the drugs, and surgery, and seeking to embrace the positives in abnormal.
Hope is healthy, and in Judy's case hope begets abnormality transformed as normality, because hope with stage four cancer requires doing whatever it takes, for however long it takes, however abnormal it is.
To not do whatever it takes is unthinkable for her.
In living with cancer it becomes abnormally normal to be learning stuff you never wanted to be learning. It becomes abnormally normal to put up with and mask pain. It becomes abnormally normal to critique hospital food like a judge on MasterChef, and dress for some hospital visits in metal-free MRI friendly outfits. It becomes abnormally normal to know almost all of the Day Oncology nursing angels by sight and name, and friend them on Facebook, and hug them on arrival, and ask about their holidays, and get excited about news of babies. And it becomes abnormally normal to plan get-away holidays around treatment appointments, capability and pain.
A new normal, I guess.
That pack of in-case-of-emergency-break-glass M&M's though, reminds me every time I think of it that the new normal isn't going to continue steadily forever.
Looking at that pack robs me of thoughts of future shared experiences with my soul mate.
Looking at that pack honestly fucks my head up.
We had the pack in the pantry at first, and it was seen by me with a jolt every time I reached for the Vegemite, so I've now locked it out of sight in the safe. Hopefully we can forget all about that serious shit that's all-too-serious and get back to abnormal for as long as possible.
Palliative care doctors and nurses are there to help, either at the end of the phone, or right at your home doorstep. If you don't know whether you should be heading to the emergency department? Call their hot line, any time of day or night. Prescribed pain medication not doing its thing tonight? Call their hot line and they can be there to help. Need someone to just regularly check how you're doing? Don't even need to call the hot line, as they've got regular visits to your home all planned out.
I don't want to imagine needing them, but imagine or not, we're signed up for at least monthly visits here on in, and both of us have their hot line card in our wallet.
The first of the regular home visits happened quite soon after Judy came home from hospital. It was quite awkward at times.
Nurse Lyndal arrived, and started with a bit of chit chat about the ins and outs of "Pal Care". (I guess the shortening of the name to "Pal Care" makes it somewhat more approachable... might be an effort to re-brand, sound friendly and lose the stigma.) Then things moved on to a whole load of questions and confirmation: How many stairs are there up to the front door? How much pain meds are you on? Got enough? Had any falls? How are things getting done around the home? How's your bowel movements? (Nurses seem obsessed with crapping.) And so on. For an hour. And through it all we can see written on her face looking at us young ones: "I don't need to be here."
And we're thinking: "You don't need to be here."
But we do like that the palliative care team is there for Judy.
Lyndal left us with a welcome pack. It wasn't cheery and full of good stuff, and not that welcoming, really. It was most unlike a welcome pack of lovely things that you'd receive at a gala horse racing industry event, or welcome pack pamphlets that you'd be given at a trade show whose contents you either mostly ignore, or get you really excited about wanting something.
It contained things like a Pressure Injury Management fact sheet, a Fall Prevention fact sheet, an Emergency Medication fact sheet, a "My Advance Care Directive" template (super cheery), and an information booklet full of Pal Care service information and pictures of old people smiling, of old hands being held, and dogs.
Surely the pack could have been jazzed up with some fun things. Like a bumper sticker reading "Pal Care is my Pal", or a colourful fridge magnet affirmation spraying "Fuck Cancer!"
Those folks are there for Judy twenty-four by seven, 365 days a year, and can help keep her away from hospital, help with organising stuff, and keep her comfy if shit happens. And that's a comfort.
It's a comfort we'd rather not need, and rather not think about, but we're glad Dr Rob thought about it so we haven't had to.
On that first visit, both of us felt odd, misplaced, awkward and a little bit silly that it was even happening. After all, Judy wasn't infirm, isn't old, and doesn't own a doe-eyed dog like pictured in the welcome pack. Just one short month later, and with cancer reminding us now that it's very much there, we're quite looking forward to the second Pal Care visit today.
One of Judy's legs has been packing up, probably because cancer is messing with the nerves in her spine. Plus there's increased pain in her hips. I bought a wheelchair. Sometimes I need to lift her from place-to-place around the home, and sometimes she walks very slowly hand-in-hand with me assisted by a cane. But she can't go anywhere by herself at the moment, not even to the toilet. I hope our Pal Care pals can assess her and help out with some mobility gear.
Oh, how I wish my super spunk and I can get back to just a little bit less of this new normality, as soon as we can, and for as long as we can.
(Happy International Nursing Day. We love you, nursing angels.)