Far too much has gone down over the months I’ve shamefully neglected this blog; especially for one post. So I’ll just summarise as best I can:
Death, death, death, despair, a skerrick of hope, crushed hope, despair again. Loud wrenching sobs; don’t care who hears me or thinks I’m a nutcase. My specialist’s regretful tone, “ There is no more we can do for you. Your quality of life will never improve, you will get worse and worse and then you will die.”
Anxiety, moments of pure panic and hyperventilation. Which are, by the way, super-good for heart-lung disease.
“Palliative Care,” says the specialist. The words enter my brain like the black screen and finishing titles of a movie that’s weirdly short and unresolved. Palliative Care means hospice, oxygen masks, white sheets, wilting flowers in vases, nurses with drugs in syringes. Scrawling last requests on a notepad. Family hovering, then receding. Higher and higher doses of morphine. Gasping, chasing that illusive next breath. The patches of dark that come with low oxygen. Then letting go. It’s this part I have the most trouble with.
Sometimes I make myself not just think about it, but feel it. Look at it up close. Death is a red neon sign flashing through my body, with letters that make no sense. I’m stunned, confounded, and trapped. How can I be here the entirety of my personality, living, breathing, feeling, eating, thinking; my past and memories, the people I love, the places I remember; and then switch it all off, like a light bulb?
But Palliative Care, that final knife-twist in the ribs from the specialist, turns out to be different to how I had envisioned (at least, so far). When I stop wailing, a nurse tells me that using their services doesn’t automatically mean I will die. “You can use them for a while, then stop if you get better”, she says. I still believe I won’t get better, but somehow the nurse’s kind patience bolsters me to ask to for a referral.
And after that, everything is better.
Now, when my breathing is difficult, I take oral morphine. I have a dark brown bottle and a syringe with which I carefully measure the correct dose, and then I squeeze it into my mouth, swallow, and wrinkle my nose against the bitterness. The morphine usually works. When it doesn’t, I take more, and if it still doesn’t work, I can get panicky and tearful. Anxiety, caused by months of long and severe episodes of difficult breathing, persists beyond good results.
And counter to the specialist’s grim prediction about my quality of life, I now have more good days than bad days. Things are definitely on the up, with blood tests showing this clinically, as well as in my quality of life.
I have a very kindly donated mobility scooter on which I rattle down to the mall, the local shops, the op-shop, or (more recently) go to the Art Gallery of NSW to see the Francis Bacon Exhibition. There is also a cycle track along the rivulet. Here, there is graffiti, rampant weeds, and floating coke cans. Persisting past the whoosh and roar of the highway rewards you with quiet, the scent of eucalyptus; tall gum trees, bark, leaf decay, and bush flowers. Ducks bob around in the rivulet, diving and splashing about, or sunbaking on little islands of gravel… In short, it’s lovely.
At home, good days are painting on my craft table – efforts of varying success in acrylics on bits of paper, or wooden ornaments from the op-shop, decoupage, paper-making, a fairy garden ornament on which I replaced the *ahem* ‘Eurocentric, heteronormalised’ features – i.e., anything pink, blonde, and ‘princessy’ (in the pic I hadn’t yet removed that silly silver crown thing) – with a red dress, dark skin, and red dancing shoes. Okay, so she still looks a bit like she’s about to go traipsing off to get her nails done for the ball, but there is only so much once can do.
Or I look after my ever-growing cacti-succulent family, which is in full spring/summer flowering mode. Pink trumpets, puffy yellow and orange clusters, tiny, pink, flowers that look as though they are carefully crafted in crystallised sugar, white trumpets with delicate curled ends, and many others.
So that’s the summary of the last eight months. Or some of it. More to come.