Welcome To The Sh*tshow

Welcome to the shitshow…hope you brought alcohol!

We found this sign in a funky, gift shop on a recent trip to Healesville. 

We didn’t buy it, but we certainly related to it. 

“The shitshow” phrase has become our ‘go-to’ expression with every piece of news received during the past 10 months. 

10 months, can you believe it? 

10 months since the initial diagnosis that rocked our world. 

10 months since we stepped onto the cancer rollercoaster.

10 months ago, Daryl was 26kg heavier.

10 months ago, Daryl laughed a lot.

10 months ago, Daryl was a different man.

10 months ago, my future hopes faded into insignificance.

10 months ago, I found strength when I thought the well was dry.

10 months ago, the heartache was indescribable.

10 months ago, we expected the shitshow to be over soon.

Today, we are still the main characters of the show.

No intermission yet. The first scene is too long. 

Cut needs to be called. The Director cannot be found.

Although, I suspect we would sack the Director if we did connect.

Like every show, there are the main cast members and plenty of spectators. 

It’s been a learning curve working out who belongs in which dressing room. Who gets a speaking part and who doesn’t. Sometimes the cast members even change, finding their role too difficult so they move on to easier roles. This often leaves us perplexed, occasionally hurt, relieved at times. Surprisingly, new players appear. Thankfully the main crew have stuck with us, even when they can’t always understand us. Even when they don’t know how to help us. Even when we are at our ugliest and lowest.

How we love them in those moments. 

Today we find ourselves making lists.

These lists will shape our tomorrows.

Our tomorrows are unknown to us yet; they are dependent on the outcomes of tests and procedures.

These lists are filled with tasks that make up some of life’s major decisions:

Work, semi-retire, fully retire? 

How do you transition from full-throttle life mode, three jobs, plus fun on the side, to no job, illness, uncertainty?

Home?

How do you say goodbye to your family farm, one that you’ve loved and hated simultaneously, for more than 45 years?

Where will we live?

How will we live?

What about the animals?

How do you farewell the dreams you had; the projects started that will not be finished?

How do you get excited about a future you are not ready for? 

Daryl recently underwent surgery, unexpected, unwanted but necessary. 

Again, we wait to see what the beast brings. 

We wait for more results, more treatment, more what? 

We simply don’t know anymore - because the shitshow keeps going.

In ten months, we have done a lot of waiting.

In ten months, we have done a lot of hoping.

In ten months, we have shed a lot of tears.

In ten months, we have travelled a lot of kilometres.

In ten months, we have seen the inside of a lot of hotels.

In ten months, we have checked into Peter Mac too many times.

I never liked rollercoasters, even as a kid. 

As an adult, I like them even less.

Daryl loves rollercoasters, even as an adult with his young sons, he was keen to jump in and fly. 

But this one, this soul crushing rollercoaster, he despises.

Surely, it’s time for the shitshow to end.

Looking forward to the curtain call.

Until next time,

N

This place

You clasped my hand as I went to leave, it was so cold. You were technically radioactive after the nurse put the injection through the cannula. The tears were welling and your voice cracking, more than usual. It broke me, more than usual. I offered to stay with you. I would have stayed in that radioactive room, if only to stop the tears, to hold you a bit tighter, to make you warm. But you insisted and I know the nurse really wanted to close the door and have me leave. He had a heated blanket ready. It is another two hours before I will see you. The poison must travel around your body and then the PET scan can happen. 

I went to the café on Level 7, it is noisy and the door to the Terrace Gardens slams every few seconds. There is a woman screaming abuse, her world has exploded. A couple sit huddled, hands clasped, broken. Uniforms rush from counter to counter, forcing food down as the clock runs out for them. 

We are texting, it’s the closest we can be. Sharing our own diluted versions of heartbreak and frustration, trying not to upset the other further; sparing ourselves the deeper fears we both hold, but never speak. 

Although today’s appointment will provide no answers now, this place is forever a keeper of our secrets. It is a place that reminds us of little positivity, unless you want to deep dive to find it, and we can and have, but only on those good days where our souls feel empathic and reflective. Today is not that day.

Here we are surrounded by invisible sickness, sadness, and grief. This place is the crusher of dreams, the place where normal life comes to die. It is the eternal reminder of our fragility and vulnerability as humans, the reminder that we are mere pawns in the game of life and presumption is a fatal flaw. This place is the collector of tears as they fall into the shattered hearts of its unwilling visitors. It could fill oceans. 

Its message is unwritten, unspoken, but smacks you with the force of a thousand whips - without health we have diddly squat. We are beholden to the medical empire and all its complexities. Without health we are ruled by pain, limitations, schedules, pills, lotions, sprays, elixirs, appointments, professionals, cons, conspiracy theories, alternate therapies, all vying for our attention because we ultimately want longevity. 

We want to live life with health and prosperity, we want to live life on our terms – but without health we have no terms; we are kidding ourselves if we think we do - our body dictates them all, our will to live determines every decision. If you come to this place, know the cost is all consuming. 

Life is forever altered, every tomorrow that you dreamt, planned for, is gone. 

Every tomorrow is now a blank canvas, shadowed but open for business, if you turn the sign around.  

This place is now part of our tomorrows. For us, there is no giving up, no backing down, we fight until we cannot fight anymore. 

Until next time,

N

The Storm

The thermostat read 24 degrees; the wind was warm

Heading out, for a moment I savoured the warmth on my skin

 

I was alone; I savoured the freedom to listen to author interviews as I drove

I ignored the empty seat beside me, it was not supposed to be vacant tonight

 

The trees began to strain against the wind as I made my way east

I knew the storm was coming

 

My friend and I met; he noted my missing plus one; 

We shared words, both spoken and unsaid, over caffeine and cake

The trees were tall, unrestrained

The storm was on its way

The thermostat read 28 degrees 

The event - charming with chatter and reflection, optimism, and advice – 

for a moment I savoured the normalcy of the conversations

For a moment I burned with envy 

My phone buzzed, my heart squeezed, my reality returned

The unrelated sirens echoed in the distance; the sun had given way to grey

 

Slipping away, eyes stinging, disappointment drowning me from the insides

My fingers typed without seeing the letters- homeward

The car shook, I looked around, the trees were dancing

The debris swirled around the car

I drove into the storm

The thermostat read 19 degrees

 

Disappointment turned into anger as rapidly as my wipers could wash the rain away

The pools of water kept grabbing at the tyres, urging me to spin me around

The thermostat read 16 degrees

 

My anger turned into fury

The branches slammed down as the trees released their deadwood

Enough with the dodging obstacles

I could barely see

The thermostat read 14 degrees

 

My knuckles whitened, the curves came too fast, my foot was slow to lift off the accelerator

Find the brake

The thermostat read 12 degrees

 

I stopped, I remembered to breathe

Enough

I needed to get home

 

I see the lights

The rain is steady

The thermostat reads 9 degrees

The storm did not win

Oh my god, there's a mountain lion in your fridge!

 

For those who know me well, walking is not my thing. Physically, it pains me due to extensive hip complications and I find the scenery uninspiring. Thistles swaying in the breeze, black flies buzzing at my nose and dust filling my lungs do not conjure kind thoughts as I scan the brittle grass for snakes. Therefore, announcing I am taking the dogs for a walk is generally a sign my emotional gauge is rising fast. 
 
It's been eight months since the alarm bells started ringing for my husband and I. I’m no longer a particular fan of bells or ringing, they are still going, yet it seems we are the only ones who hear them some days. Other days our community hears the toll and rallies – we have been blessed with favours, lawns mowed, trees tended, ironing done, shopping fetched, treats purchased, messages of encouragement, funny videos, personal visits, kind words and so the list goes on. On Friday, Daryl received an anonymous gift from Comfort Quilts Against Cancer. We have no idea who this is from, who arranged it - we wish we did because then Daryl could thank them for their kindness and consideration. The gift brings him joy, knowing someone out there thought of him in this time of trauma; the gift also brings realisation that he belongs to that special club only reserved for cancer sufferers - the club nobody wants to join. 

According to the recovery book we haven’t made chapter one, we should be into chapter 4 or 5. It feels like failure. We are told it’s not. It still feels like it. I am asked ‘How is Daryl?”. Daryl is asked ‘How are you?” People see him and say, you look so much better. People say, it’s good you are recovering. People say, you must be glad it’s over. People ask me if it’s better now Daryl is getting better. The answer is beyond complicated. And so, we blur the truth because we cannot hurt those who care. The truth is impossible to share, not even on these pages.
We know people need it to be better – we need it to be better. But cancer doesn’t care what anyone needs. It cloaks you in dark shadows and layers judgement upon you so you can feel beaten daily, at least that how it is right now. With each set back, with each struggle, with each hurdle, the tears go unseen, shed in privacy, away from the sympathetic eyes, hearts full of grief for their fellow human’s sorrow and gratefulness it is not their own journey. We understand, we are the same. If we began to utter the truth to ‘how are you?’ the emotion would be too much to bear.  So instead, we keep trying to see past the shadows, shrug off the cloak of judgement and look for the signs of success through the lens of hope. 

So, for those of you who continue to stand by us, hang in there, for the ride is not over. Please don’t get off just yet, because we need you to stay with us until we can all hop off together. 

Below is a piece written by someone else who has battled through the darkness of cancer. It was sent to us and may help you understand this insidious journey.
 
 
"What’s it like to go through cancer treatment? It’s something like this: 
 
One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.
 
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
 
So, you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.
 
Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
 
As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric sabre fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
 
Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.
 
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying, “can I get some help, I’ve been punched in the face by two apex predators, and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”
 
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
 
And all your friends come running up to you and say “That was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
 
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. 
And everyone says “boy, you must be excited to walk down the mountain!” 
And all you can think as you stagger to your feet is “Fuck this mountain, I never wanted to climb it in the first place.”

Until next time,
N

The Beginning - Shadows

The shadows darkened that day. 

A few words, uttered by a small man, sitting in his windowless office, tilted our hold on the universe a few degrees. “The results show cancerous cells” the doctor said. His narrow eyes flited nervously to ensure his message had been heard, then launched swiftly into the practicalities of referrals. Stunned into silence, I watched his hands shake a little as he moved his fountain pen across the page, asking very important questions - name, date of birth, weight, height, next of kin – I am here I wanted to say, I am here but I cannot move. The shadows have crossed into my view, covered my heart, and balled in my stomach. They are filling my lungs, filtering the air I need to breathe, the shadows have entered uninvited, unannounced and with fervour. Raising my eyes, I see my own shock and fear reflected in my husband’s, the first tear to fall from his face signals the beginning of a journey we can’t imagine.

 

What do you do after you’ve been told you have a potentially life-threatening illness, what do you say, how do you feel? There is no handbook, no guidelines, no set of rules. How do you watch the person you love with all your worth, invisibly shatter; how do you stop yourself from crumbling alongside them? 

Over hot chocolates we shed silent tears, passersby did not notice, we said the right words, positive, strong, hopeful, cupping our mugs with both hands to stop them from shaking, we smiled the smiles of the broken. 

 

After the initial diagnosis there is little to do but wait and inform those dear to you, that life as we know it, is about to change. With each telling there is no comfort or reprieve, everyone is devastated. No one is expecting this story. 

The lack of answers gives way to questions that go unasked, except in our minds. The dark, sinister thoughts that tease and twirl around, shadowing any positive aspect of thought, especially during the twilight hours, are the cruelest. The nights are interminably long. Four types of cancers, we are told, are in the report. This is not looking good. The shadows eat this information and grow ever darker. Internet searches feed the beast. 

 

 My man wakes shuddering, damp with sweat, crushing the sheets as he wipes the tears from his face. The night terrors are here, and sleep is elusive. He grieves for his father, his dear, darling dad who he cannot bring himself to tell. The fear of causing pain to this 95-year-old icon is palpable, his heartache is raw, and I see it in the newly formed lines on his gentle face. I see the shadows in his eyes – hunted, searching, fearful eyes grieving things that are not yet lost to him.  I hold him, I never want to let him go. I have nothing else to give him but me and I pray this will be enough. 

 

The cancer centre contacts and appointments are made, scans to be had locally to ensure the white coats have everything they need. The local coats move fast, they are kind. 

One week, then more scans, tests, interventions, conversations, questions, consultations. 

Seven days before we know how the “and in sickness and health, ‘til death do us” part pans out. 

One hundred and sixty-eight hours before we face the life altering moment of definitive diagnosis. 

Ten thousand and eighty minutes to wait for the prognosis. 

Six hundred and four thousand, eight hundred seconds before we know the plan of attack. 

It feels like fucking forever. 

 

The hours are filled with activity, there are still jobs to be done on the farm, unfinished projects that held no timelines before, now seem to be priorities. Clotheslines need relocating, paths paving, lawns require mowing, edges whipper snipping, weeds spraying. And there is the shop, how do we manage our beautiful store?

Spring is smiling its sweetness upon us and as the greyness around us starts to recede, bursting into colourful blossom, it reminds us that a new season has begun – both in nature and in our life. The winter fog that lifted outside our window revealing the day, has settled in our soul; no matter where we look, how we listen, or who we see, it does not budge. 

Instead of early Spring rain, tears fall freely. There is no sunshine here today. 

 

Friends and family keep us distracted. Their presence provides moments of comfort, care, and compassion. The little ones bring laughter and fun into a home full of shadows. Oblivious to their Poppy’s pain they don’t see his silent tears as he plays trains, they miss the anguish as he helps them feed the chickens. 

What is he thinking through these moments? 

What demons are taunting him? 

The little ones do not know their Grandma’s fear, they are safe and secure, for now their Poppy is the centre of their world – and he loves it.  

The grown-ups though, they too are grieving, they too are fearful, they too are now waiting for the shadows to change. 

 

 

Until next time,

N

Christmas Wishes

For more than 50 years I have looked forward to Christmas Day and all the hope and joy it promises to deliver. 

As a parent, I worked myself into a frenzy trying to make the experience a treasure trove of memories for my children and those around us. I wanted them to have traditions - tree decorating, fruit cake, mince pies (homemade), Christmas punch, carols for 25 days straight, poorly made stockings-filled with love and undies. I wanted them to grow with the knowledge the day was more than just a present grab. I wanted them to appreciate the people in their lives, family and friends, and enjoy the gift of giving, not just receiving. I ached for them to have so much more than I did as a child. I yearned for them to experience joy, to know they were worth the effort. I dream in many small ways this was achieved, but I doubt I got it right all the time. But then, like Christmas, I am not perfect and in this imperfection, I hope they reflect on the positives, cut their mum some slack for the unnecessary stress, forgive her woeful sewing skills and grow from the experiences they have shared in their lifetimes. 

This year I am passing the festive baton onto my middle daughter, and her family, who have offered to take on the tradition of Christmas breakfast. I am delighted and saddened in the same heartbeat. I know I won't be able to roll out the festive feast in 22 days, but I wish I could do so. 

The smell of bacon cooking infused with coffee brewing, the mess of pancake batter splattering over the cooktops, muffins toasting to various degrees of crunch, the sticky fingers from cutting up fruit, and the endless cups of tea being prepared in a kitchen way too small to fit the extended family, along with the sounds of table setting and children helping, will be missing from our home and will be replaced with just us. There will be no strains of Christmas carols to make the kids groan and our annual song 'Christmas Shoes' will not be played; there won't be mounds of torn wrapping paper strewn across the floor, quickly collected by my eldest daughter, and neither of us will wear silly Santa hats. 

I expect by the time the morning of December 25 rolls around, I will be extremely grateful for the silence, to start the day slowly, to ensure Daryl can join us. I will be thankful for the opportunity to pack up the stockings and gifts and hopefully drive just a short distance away to join the chaos of our family Christmas tradition. Maybe we will wear silly hats, listen to the sounds of Christmas carols or they will be drowned out by the delightful din from excited grandchildren and grown-ups alike. Whatever the morning brings will be just right. I will, as I do every year, observe my family, through tearful eyes and a full heart, counting my blessings as they open their gifts, exchange hugs and words of appreciation. For us, it is an opportunity to bless our children and their partners (all 15 of them). But this year, no-one deserves some TLC more so, than my own husband and their father, step-father, grandfather - Daryl. 

Daryl has endured the horrors of intensive radiation and chemotherapy treatment for a cancer diagnosis that shattered our world some six months ago. This has been a period of our lives that we never anticipated, like many before us, and we have had to find our way, navigating a medical system and developing a whole new vocabulary. We have needed to live away from home to be near the hospital, away from the people in our world, away from our work, our business. We have had to adjust to a new normal even when this normal kept morphing and changing, leaving little room for complacency. We are not friends with this new normal, merely companions for the near future, until we might bid it goodbye.

In the weeks leading up to this Christmas we find ourselves re-evaluating everything we once believed, fought for, or considered relevant. In all this reflection, it is clear the priorities are not our material possessions but the people in our life, some near, some far. The ancient philosopher Epictetus wrote "The key is to keep company only with people who uplift you, whose presence calls forth your best." He is correct.  We have been unable to change the circumstances we found ourselves in, but we could and have influenced the journey. Some days have been darker than others, but today, like every day we are yet to be gifted, we are choosing to embrace the positive, accept the reality and release anything we cannot change. 

Christmas will mark the beginning of the recovery phase for Daryl, a period of healing and rest, of waiting for the next instalment. We are blessed to be able to wait back at the farm surrounded by the familiar smells and sounds of home. It is nice to be in our environment and to be greeted by our four-legged freeloaders and our cackle of hens. To walk into our business, breathe in the scent and be soothed by the soulfulness of stories is like a dose of Daryl's magic pain potions, - it brings calmness and relief. Now the festive decorations are starting to go up, we are being modest this year, and for once I am ok with the theory of less-is-best.

Christmas it is not being cancelled at Rivergum the year, although it was considered, it will be merely changed. Like us, it will evolve into another form, fitting into the heart of our family, as it gathers together for the first time, in so long. 

However you spend this festive season and the days leading up to your celebrations I wish you many things, but most importantly I with you good health, good people and good luck (luck is what happens when preparation meets opportunity - Seneca). 

Don't wait to do things you wish to do - do them now. There's never enough time, never enough money, nothing is perfect - that's ok. Do them anyway.

Until next time,

N