Mercy dash
After getting (and giving) bad news, all you want is to be together. So with a continent between us, here's how my little family closed the gap between East and West to hold Dad's hand.
The night I received the news from Dad, I didn’t sleep a wink. It hadn’t yet been two years since we lost my mother-in-law to brain cancer, and in that time, I’d watched my own mother lose her partner of 27 years to oesophageal cancer and my high school bestie lose her battle with addiction to suicide. I’d long since shed the childlike illusion that life is fair, but if bad things come in threes, surely we were oversubscribed.
As the sun rose on a new but sh*ttier day, I decided to take myself for a walk - partially to escape the house before my children woke and saw my puffy, sleepless eyes, and partially to give my racing thoughts somewhere to go. Dad and I were separated by a continent; me on the East coast of Australia and him on the West. My instinct said get on a plane, but reasoning said wait – panicking helped no one and I didn’t want to spook Dad by overreacting. As in all times of crisis I needed external consultation, and there was only one person to call; an old boss turned dear friend who’d lived an eerily similar life to mine and had lost her own father at around the same age.
“Drop everything and GO,” she told me after a teary exchange, empathically knowing what my news meant and the hurt it would inevitably deliver.
“You’ll never regret getting on a plane now, the rest will work itself out.”
I don’t know what I did to deserve someone like that in my life, but if people were made in cauldrons, I hope she and I were made in the same one. It’s worth mentioning that this was June 2021, a time when masks were worn, arms were (or weren’t) jabbed and most Australians couldn’t come together to celebrate, meditate or commiserate. Determined not to become one of the poor souls pleading with politicians via the TODAY show for a travel exemption (or heaven forbid, saying goodbye to Dad over FaceTime), I booked flights and got my little family on a plane to Perth. We landed to a midday press conference with our then-premier announcing that at midnight, just 12 hours later, the border would be shut indefinitely.
A day later, we eagerly awaited the results of our airport Covid tests. Finally cleared, we immediately arranged to meet Dad at a local café, still open thanks to WA’s then almost-Covid-free status. I watched as he arrived, taking a moment to stop at the door and take off his glasses so he could wipe tears away. My heart in my mouth, he walked toward me, looking just like him, and giving me the sort of hug you get very few of in a lifetime – one that says, ‘I love you, I’m here, everything is going to be OK’.
Over the coming weeks, we walked, talked, laughed, cried, drank, ate and breathed our new reality. We went to endless doctor’s appointments and started to piece together the beginnings of a plan; me the extra set of eyes and ears necessary for navigating the complex and fraught medical system. At first, we felt in good hands. After 15 years as a health journalist, though I knew I couldn’t save him, I was certain I could buy him extra time. I’d dedicate myself to being the best carer and advocate I could like I’d done everything else in my life; with hustle, coffee and the power of asking lots of dumb questions.
But after 15+ years of navigating the healthcare system professionally, I was about to get a crash course in what it’s like to go through it personally, and what I’d find would blow my mind.
In some Next Of Kin posts, you’ll find our best attempt at ‘tips’ from the carer’s perspective, the patient’s, or both. They are in no way exhaustive nor ground-breaking, but they’re the things we can put our finger on that helped (or would’ve) at that point in time, for what they’re worth.
Tips for navigating the ‘what the f*ck do we do now’ phase, from Casey’s perspective:
1. Do what your heart tells you to do and work out the details later. Big disclaimer; I work for myself, had not-yet-at-school children and my husband was already working remotely thanks to Covid – all of which worked in our favour when it came to getting on a plane. I’m also married to the world’s kindest man who would do anything for me and the people I love without flinching. Going wasn’t a question, which is lucky, because I don’t think I ever asked. Not everyone would be able to drop everything and walk away from their lives, and I’m grateful and fortunate we could. Here’s how I think about it: Money you can make back. Work you can make up. What you can’t get back is time.
2. You learn two things quickly when life throws you a curveball. The first is that while family is everything, unconditional friendships are pure gold. Many of ours spent hours (and hours) packing up our lives in Sydney, with us unable to return to do it ourselves as we’d be locked out of WA and away from Dad. We will be forever indebted to them for their generosity. I would’ve crawled to the ends of the Earth for those people already, now I’d do it with a buffalo on my back. The second is that ‘home’ is a fluid term we construct that has nothing to do with bricks and mortar or IKEA. I’d had a 15-year love affair with Sydney, the city I called home, and yet for years we’d talked about getting out. Singapore? Byron Bay? Perhaps somewhere in Europe? We’d hypothesize frequently about where home could be. Now I know that home is wherever we are. Home is my husband and children, and if we’re together, I’m right where I need to be.
3. This might be controversial but I’m going to put it out there anyway: I’m a bit of a pessimist. I’m not the grinch, crushing dreams and leaving crying babies in my wake, but I also don’t subscribe to the notion that without hope you have nothing. I’m not saying to embody doom and gloom, but optimism may serve better than hope when someone gets a poor diagnosis or prognosis. I heard once that ‘hope isn’t a strategy’ and while the context was business, I think it applies here. Optimism on the other hand is supportive: that things will be OK (and you will be OK), regardless of the outcome. Your role as a supporter is not to be a beacon of hope, it’s simply to hold the flashlight. Offering assurances that aren’t yours to give isn’t helpful, nor do I think it is kind. You cannot ‘will them well’, as much as you’d like to.
Tips for navigating the ‘what the f*ck do we do now’ phase, from Jack’s perspective:
1. Take someone with you to appointments, don’t try to handle it all alone. Get help with the admin side of things too, if you know you are crap at research for example, get help early.
2. I would’ve valued advice from someone living with my condition early on, to find out what they were doing that was working and, while I know everyone’s journey is unique, to speak with someone having a similar experience. I didn’t find that, but it’s possible I would have if I’d kept pushing for it.
3. Ask for what you want and need on every level. No matter how much of a people-pleaser you’ve been throughout your life, now is not the time for that.
Next Of Kin is written by health journalist Casey Beros and her Dad, Jack Wilde, to create a space where patients and carers can become better Next Of Kin for each other and the world at large. If you know someone who would benefit from following our journey, please send this onto them. You can follow Casey on Instagram here and find out more about her work here.