Disappointment - an underrated emotion

Not long ago I was writing my part of a eulogy and the one request given to me was not to use the word journey. They were adamant, that this word was not adequate to describe the life preceding this final stage. Words are so powerful, and I understood why this request was an important one.

Recently, I have been struggling, in my own space, to find words that adequately describe my emotions, my journey, my future. There are many contenders, and anyone who has read previous blogposts will be familiar with some choice phrases. However, I wonder as I sit here today, if we have moved into a new phase.

This morning as I went about tending to our animals, I noted the hen’s water was thick with sludge built up from lack of cleaning. For those unfamiliar with the habits of our feathered friends, native birds wash themselves in the small auto-fill bowl, and the hens scratch dirt and other unknowns into the base of the bowl as they search for bugs nearby. This creates a murky, black sludge that slowly replaces the clear water that should fill the bowl. As I set about cleaning, using a course brush I create a swirling motion which lifts the sludge and I can then toss it out, in quick flicking motions, until the water runs clear.  It’s much like creating a mini storm. I watched this process; one I have done hundreds of times before and thought it was an apt picture of our life at this time. 

On the surface, from a distance the water bowl looks fine, create a ripple, ask the right question and I fear we may not be able hold the sludge from reaching the surface. 

Finishing this task, the last one on the list was to check the letterbox, which includes a short walk for the two dogs. Oscar and Scoot were excited by the prospect and took off excitedly as the first drops of rain hit. Despite the black clouds and increased rain, I kept walking. By the time I got to the mailbox, collected the mail, and turned around, the skin on my arms was on fire, the raindrops were like ice. Looking for the dogs, Oscar was oblivious to the rain, rummaging in the paddocks for something disgusting to eat, while Scoot was looking at me with the saddest look on her face – one of intense disappointment. She couldn’t get her little legs moving fast enough back to shelter. 

 

Disappointment is such an underrated emotion. I wonder if it is what I am now experiencing on such an intense level, that all the other emotions are being mixed into one. A bit like the soup I made yesterday.

I spent some time researching the definition of disappointment which can be described as “being sad or displeased because someone or something has failed to fulfil one’s hopes or expectations”. The definitions are endless. My disappointment with life, at this time, is endless.

 

This week, initial hopes that our farm would sell quickly were dashed on the same day Daryl underwent further surgery on his jaw, necessitated by complications of radiation. This procedure is meant to be done under general anesthetic, but due to a 12 month waiting list, it had to be done in the chair. The staff were incredible, it was unbearable to witness, cruel to endure. Couple this with disappointment at the cancelled farm sale and I was grateful they gave Daryl very good pain relief. 

 

I am all too aware that other people are facing their own battles, some far greater than ours and I don’t in any way diminish anyone’s journey. Life is complicated, I get it.

I just wonder how much complicated people can take before they say enough. On these pages, like many other social media or other public pages only a snapshot is shared. 

Therefore, how do people like me, and you, our friends and strangers get through the murky sludge?

I believe there are two important factors. 

Firstly - It is the real village that hold the power – the people. The ones who see through the false clear water and are willing to get into the sludge and help clear it out. The people who don’t wrap you in cottonwool yet share their world with you – the good, bad, and downright ugly. Sharing the normal makes me feel normal and valued. Isolating people who are already feeling disappointed with life just adds another layer of sadness. 

 

Secondly – Having life to look forward to is so important. It’s the little things and the big things my friends. It’s being included. It’s being invited to be part of life. It’s having things to look forward to other than hospital/doctors’ appointments. It’s the unexpected invite for coffee, the unexpected drop ins. Invitations to join a group. Life is too short to wait for the right time - if you think of someone, call them, visit them, text them – share something with them – I bet you they need it. 

 

I am writing this today looking at a spectacular view from our dining room window. It is like spring not winter out there. The serenity should sing to my soul, instead fatigue fills my lungs, and my bones are heavy.

Heartbreak is not always visible. Like disappointment, it can be a long, slow burn.

 

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

Filed

When life feels out of control, what do you do? 

Well, this afternoon we cleaned out the filing cabinet! I can highly recommend this activity. The alternate was to make more zucchini relish (it is indeed the season for it) but Daryl already had the zucchinis soaking and seriously how much relish can you eat? 

The filing cabinet stands stoically in the corner of our study and is a silent reminder of the many ‘must do’s’ I have on my list. Although it never raises its voice above silence, I can hear it, feel it call me to sort it out and lighten the bulging drawers. 

Why did today choose to be the winner of this particular task? I have no idea. Maybe because driving to Melbourne to pick up some books and the proverbial kitchen sink was not enough of a distraction yesterday. Maybe, there is no explanation, and on a whim we started. I must admit Daryl was coerced into the exercise but willingly looked through files while resting on my favourite red chair. Our filing cabinet, like many of its kind, holds secrets and treasures of its own. It is indeed the keeper of our memories long forgotten, the holder of our decisions made many years before, it is also the reminder of time passing by. Each document releases a memory, a recollection, a time of joy, expense or regret and this moment is hurled back into the present for us to savour or discard. Sometimes the dust that flies from the pages is a little suffocating, other times I felt like I needed to wash my hands. I sustained only one paper-cut. We found old report cards, letters to sports stars, many works of art, receipts for small purchases and others much larger - like our trip to the UK a few years ago. Legal documents, financial statements, all crammed the files despite having no purpose now. Some days I feel just like those documents, taking up space with little purpose. 

My friend and I drove to the city last night, on a whim. We both had items to pick up as mentioned previously (seriously, a kitchen sink and books) that I might add a more logical minded male, known well to us, pointed out could easily have been delivered via a courier. He is correct, they could have, saving several hours of our time and significant fuel but when my friend and I were having this conversation, something in me stirred and I saw an opportunity. Albeit odd, irrational, illogical - an opportunity should never be ignored. 

We spent six hours on the road, two hours dissecting an ordinary dinner in a Fitzroy café, collected our respective items and never was there a moment of silence as we devoured the chance to share our inner worlds – the one we keep hidden, protected - the one that makes us vulnerable and a little (somedays, a lot) out of control. It is a friendship that has spanned more than two decades, and to an outsider it’s probably a bit weird, but it works. Distinctly different in every way, we complete each other – but never in the way of self-help books or a standard arc, plans or plot lines and that’s perfectly ok. 

We didn’t solve anything, we didn’t make any grand plans, we didn’t really do anything spectacular – but I heard my friend, I saw her, and what did she do for me? Exactly the same. In those hours we stopped feeling invisible. 

Much like our troublesome filing cabinet I have closed the drawers again, less encumbered than before. Daryl has gone back to making zucchini relish, my nose is smarting from the strong smell of vinegar filling the kitchen, my eyes are stinging as the chilly simmers on the stove. I know he is contented to be back and being useful. While he can’t control the chaos of his health concerns, he can cook up a damn fine relish. 

Until next time,

N

The Cracks

They just appeared – the cracks. Seemingly out of nowhere, one day they were simply everywhere. 

Rivergum, once flush with flood waters, is again displaying the sure signs of the summer dry. Surprisingly though, because we expected the underlying layers to be well soaked. 
Hauntingly, reflective of our days however, as with each step, we feel the cracks widen. 
 
Each morning I walk through the paddocks and watch the ants scurry about their day often rushing into the cracks, or around the cracks -

busy, doing life. I do the same. 

The hens wait impatiently for me to be let out so they too can get on with their day without the restrictions of the night pen holding them in. They don’t appreciate that the pen is keeping them safe from the predators that roam. Maybe we can find a night pen for us too; one that protects the heart home. 

 The bees work methodically in the early morning dew, focused on the task assigned to their role, I must watch I don’t walk into their pathway. They will not veer away from their intended destination. So focused, they simply plow into my head. Maybe I should be more like the bees.
 
The cracks have become so large, some of the established trees are starting to wilt, some have curled up their leaves and given up. The dry is too much. We should have noticed earlier. The signs were silent. Like D they couldn’t speak. The mobile water tank has been filled again and we try to help with additional waterings, too little too late? Probably. Effort required to fix broken is more than what's in the tank. 
Maybe we need a new tank. 
 
The paddocks have been stripped bare. They lay exposed with no protection from the assault of the sun. The caretakers abandoned them, without reason, without warning. In his pre-autumn phase they crave conditioning, sustenance, an abundance of care. They too need to store goodness for the winter bare and future spring growth. Today, we relate to the paddocks. 

The cracks have appeared in strange places. Places we never saw them before. 

A storm came through the other day, and it brought rain and lightning and thunder amidst the intense heat. High intensity, short reprieve. 

We travelled to the city, experienced our own storm within the walls of the hospital. High intensity, short reprieve. 

Until next time,

N
 
 
 
 
 
 
 

A haze of hopefulness and trepidation

We bought a Christmas ham this year which I did not expect to do. Although this is a traditional activity and part of the normal preparations for the festive gatherings, we are not in a normal state of being. 

So, when my husband adamantly asked for one to be ordered I simply agreed, flummoxed by the request, and arranged for my daughter to complete the task. Afterall we were in the throes of rigorous cancer treatment and Daryl could barely speak, let alone, eat. 

The ham now sits in our fridge, and like me, is possibly confused by its presence post-Christmas. I did suggest baking it on Christmas eve, but that suggestion was shut down quite stoically. Just as well, as I was exhausted, and the idea of cooking was truly unappealing.

 

Now, Christmas and Boxing Day have been and gone, in what feels like a haze of hopefulness and trepidation. 

I worried Daryl wouldn’t be up for the chaos of Christmas breakfast, a tradition on my side of the family that brings us all together, resulting in big personalities vying for attention, tall tales, and even bigger hugs all around a very loud dining table. 

Yet, in the early hours of the morning as we prepared to go, Daryl didn’t even whisper a complaint or suggest staying home, despite a difficult night cementing the weariness in our bones, just that bit deeper. 

I worried that our presence would dampen the spirit of the morning, I worried that Daryl would feel self-conscious, that he would feel left out, that he would be exhausted. But I needn’t have worried - despite the tears that welled when some of our clan laid eyes on him, the extra tight hugs, the careful lowering of exuberant voices - the mornings celebrations were perfect in all its imperfections. 

I shed quiet tears and ached for the loved ones who were missing from the table - loved ones taken too soon by the angels of death, others through choices made from petty grievances and stubborn pride - then I looked around and rejoiced in those present. I realised I have limited resources left in my emotional tank, so I must accept the situations as they are and make the best of each one. I recently read a small sentence with a big message, and it read, “The biggest mistake you make is to live your life like you’ll get another chance to experience all the beauty that surrounds you.” And it’s true. We have experienced so much grief and loss this year that this needs to be reinforced, repeatedly, until it is our truth.

 

Working in the retail sector I watch and read the trends around the industry and listen to the people who shop in our store. I hear their grumblings, grievances and listen to the choices many are making to enhance their lives and those around them. For our family we chose experiences as the theme for our gifting this year. This has been highlighted by Daryl’s journey which has touched us all in some way, emphasising the brevity of life and opportunity. We were doubly blessed when our children chose to gift us similarly, with an experience to enjoy down the track, when Daryl is up for a new adventure. A day we look forward to very much. 

 

The remainder of the festive days were filled with family and friends. Daryl pushed himself to participate in family traditions throughout the big day and while these choices cost him physically, rendering him unwell for the evening and into the night, I’d suggest he would repeat it again, given the same circumstances. 

 

Today, the heatwave which has taken hold in Victoria is still in full force and we have taken refuge indoors, resting in the air-conditioning and enjoying the company of visitors to our home. Even the pups have been allowed inside to get some reprieve from the sweltering conditions. It’s hard to believe we had the wood fire on two weeks ago!

 

The Christmas ham still sits staidly in our fridge, and I finally asked the question about its fate. Turns out this humble ham is Daryl’s symbol of hope and healing. It will be providing the base for a celebratory feast to say thank you, sometime in the near future; a future we cannot even envision today, but one that is building moment by moment. For now, we take inspiration from the words of our children:

 

Finding the words in times of hardship is never an easy task, as such, we search for words used before – in doing so, we found this beautiful piece that made us smile. We hope it brings you both a bit of happiness too….’Home’ – Nikki Barnes.

 

Find the people and places that make you feel home.

Find the ones who take care of your soul and make like you can be completely yourself around them.

Find the ones who light you up from the inside out and encourage you to be yourself.

Find the places where you feel at peace, the places you could spend forever exploring and wandering.

Find the places that make you want to see even more of the world and the ones that make you happy to be alive…

And whenever you find one of these people or places, hold onto them so tight.

Tell those people you love them often.

Visit those places as much as you can.

Never let go of those people or places because when you find peace and love and joy in the world, it is worth more than gold.

It is where you are meant to be.

 

We love you both endlessly.

 

Love always, The Gang xox

 

 

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