Press in..

"The veil between here and heaven is very thin. But it's a dreadfully painful one. We struggle to see beyond these days and look upon eternity with gladness... (The Hardest Peace)

 

 

I've found a strange kind of beautiful in this... 
In these terrible, chaotic, white knuckle-type- days there are moments of this strange beautiful.

This week the beautiful has looked like a pressing in of our people.
They have taken a large step towards us,  pressing in and shouldering the all too sad.

This pressing in is so important at this stage of our long goodbye.. This goodbye that I want to last and linger and prolong in it's eventual arrival.

This beautiful pressing in- It's a tangible thing. The way our house has seamlessly filled with our people. The hands that have arrived to fold washing and unpack dishwashers.
The hands that have arrived and held him close.
Held me close.
Held my three little guys closest.

This is a beautiful thing.
The gentle press of love and kindness.

Sheldon wanted this.
He knew we needed this pressing in of support and care.
He knew we needed the hours spent sitting around a table laughing and eating and crying... and eating (oh the food of this pressing in!!!)
And it isn't just us. Those people who press in need this time.

Time to love on him.
To remind him of how he has immeasurably impacted their lives.
To laugh about the old days and to reassure him that they'll be here in the coming days.
To hold his hand as tears flow and to sit in a beautiful silence that says so much.

 

Time to just press in.
To press closer to him.
To revel and savour these days.

We need to revel in these days.

 

And so I have a request.

 

A request that will help this pressing in of love and support.
We honestly don't have a truly clear idea about the time we have.
But we know that this week is worse in so many ways than it was last week.
We know that he is tired and in more pain. Today he relied on morphine injections to function. The pain is increasing and stealing in.
So. ..
Here is my pressing in request.

August is an important month for Sheldon. On the 23rd of August Sheldon will turn 43.
The harsh reality of this jourey is this: It will be his last birthday that we can celebrate with him.
That sucks. So much.
So very very much.

We want to fill this place with birthday awesomeness.
We want him to feel the full force of this pressing in.
And not just Sheldon.
But our boys,  who have had to carry this weight of grief and are doing such a courageous job. They need this. Need to read messages of birthday joy and kindness.
We need to celebrate this. In the face of the un-celebrate-able. We need to celebrate 43 fantastic years.
So... here's  what you can do:
Send Sheldon a birthday card.
Tell your family and friends to send him a birthday card.
Get your work mates to send him a birthday card.
Send a message of birthday joy.
Help us make August the month of celebrating Sheldon.

Celebrate life and the days and minutes and hours he has lived.

It's time to press in.

To say what needs to be said.

To celebrate.

To wish him the happiest of all birthdays.

 

Send your cards to

Sheldon Gakowski

PO Box 130

Rural View 4740

 

One card.

Two cards..

a dozen..

Let's fill these days with YOUR messages to him.

Press in.

  Thanks. Xoxoxo 

 

 

I'm angry..

I don't even know what to tell you.
How to put these days into sentences.

It's hard to give borders of meaning to the insurmountable loss we are staring down.
I've tried.
For two years.. I've tried.
I've metaphorically painted pictures of this cancer and how it's tearing my heart out.
I've verbalized the idea of loss and the flip side of eternity.
I've waxed lyrical about the journey.
You've heard me.
You've listened.

And tonight I have so many things to say but I can find no words.
Just this:
He's dying and I don't want him to.
I'm angry.
He's heartbroken.
I'm heartbroken too.
But mainly angry.
And not raging, table flipping angry. Just a slow burn.
A simmer.

I'm trying not to let this simmering anger invade the moments we have. Sometimes I'm good at that. And sometimes I fail..
I don't think the anger will last forever.
I hope it will ease and be replaced by a calm acceptance.
Not yet though.

I've always attempted to shy away from the anger emotion.
For good reason.
Anger is a bitter pill.
But at the moment it's my bitter pill.
And I'm savoring it.

I'm angry that he is losing weight and exhaustion steals him away from us and he sleeps so much. I don't want to accept that.
I'm angry that we have conversations about funerals and life insurance. I don't want to accept that.
I'm angry that his liver is peppered with tumors and when we sat down with the ct scan we lost count.
I'm angry that he is in pain but tries to hide it.
I'm angry that his body is signaling to us that the fade has started. That we know. We don't want to talk about it...Admit that we can see it. I don't want to accept it.

But we can see it.
Cancer is a thief and I'm angry.

A most beautiful reason...

I sat in another hospital waiting room this week.
For the most beautiful reason.
Mrs. Shannon,  my brave and strong little sister, gave birth to her daughter.
Bethany Joy was in such a rush to begin the adventure that is living these days that she made her appearance in the moment Aunty Suz went for a coffee. Me and my caffeine vice.. (And can I just add that I was under the impression that we had hours of waiting stretched before us when I popped out for said coffee break?? Good one Bethy!) 

She was in a mad rush to be here.
She was wide eyed and perfect.
I fell instantly in love and I'm so thankful for the way my family operates- we belong to each other. My siblings love my boys like they belong to them. I love my nieces and nephew the same way. We belong to each other.

The birth-day of princess Bethany Joy was a reprieve and a reminder.
It was the ebb and flow of the days we are walking.
She is a sliver of heaven, suddenly at home with us.
A reminder of life and how beautiful it is.
A reprieve for her Aunty Suz. Just to sit in that moment and stare into brand new eyes.
What a joy she is.

As I was lost in the wonder of Bethany Joy,  my phone rang. Sheldon was still up north.  He had been picking up a trailer and visiting with his brother before he flew down to meet the newest addition. He had been on his way home from the farm when an accident happened in front of him.  He was right there. One of the first on the scene.
I heard everything I needed to know about how tragic the outcome of this horrific accident was in his voice.
Right there.
I was holding the 6pd 11oz precious reprieve, the perfect reminder of living and I heard it.
The painful, edging it's way back in.
My heart instantly and easily leaned back towards the heaviness it had tried to forget.
That frailty and fragility of life.
A young man. Gone.
Sheldon didn't know him. But on that cool June evening he fought for him. He fought with the same tenacity that he fights his own battle to live some more minutes and days.
He gathered a collection of strangers who had stopped at the site and they fought for that young man.

The ache that Sheldon felt in his arms and legs the next day stood testimony to the minutes and minutes that he tried to help him breath, this young stranger who died an untimely death.

Our hearts go out to the family and the friends of this young man.

A magnificent tension.
The truly beautiful.
The tragically horrendous.
Marching together.

I held my phone to my ear with one hand, Bethy was held close with the other. I listened to Sheldon talk about the accident and the moments after.

"Just get on a plane. Come and cuddle Bethany. She is everything perfect and beautiful." 

Try to push back the bad. 
Look for the reprieve from the sad.
Look for a reminder of the beautiful.

Sometimes I feel like I have a set of scales in front of me all day, everyday. And I shuffle our moments. Weighing the bad news,  the set backs, the prognosis of terminal..
And as the sad side dips down, piled high with these tough days,  I scramble to find the good. To find the laughs and the hope. To add to that other side.. To try to make the scales of our moments sway between the sad, the tough and the lovely, the beautiful.

That's the magnificent tension. The scales of our moments, weighed with the weight of cancer and all of its horrendous crap.. Balanced with the birth of a little slice of perfection. Balanced with our boys and the gift that they are. Balanced with the years we have had.. The life we have built.

Weighing the moments.

Sad.

Happy.

Terrible.

Beautiful.

It's the magnificent tension. I've talked about it before (previous blog titled 'The Magnificent tension') because it's the only way I can give words to express what we are walking and living.

The unthinkably sad, arm in arm with perfection. 

So...

I have a stunning new niece.

I FaceTime her mother and only want to see the newborn sleeping.

I demand photos of each outfit, each moment.

Perfection. 

And then...

We count our days. (He's sore.. His liver hurts tonight. He has a really bad cough. We count...)

We weigh our moments. 

Sometimes the scale tips towards the beautiful...sometimes towards the tragic. 

Still.. We go on. 

We just go on. 

Suz vs. the Wall

For a long time I've heard from well meaning people that I'm heading for a wall.
Just the other day my chiropractor said it..
"Your body is in trauma survival mode... the line between simple stress and full blown trauma has been crossed and your body is hurtling towards a wall."
A kind therapist explained it recently when I sat down with him to talk about strategies to help my sons deal with... well, with the idea of losing their dad. Suffice to say that the session quickly turned into a "emergency help for Suz". I hadn't really spoken much about what is going on in our world. I've had the odd chat but prefer to write these little notes about "feelings" and what not.. It's nice to write something, post it and feel a certain detachment.

 I do that a lot... Detach. Here's what that sounds like: (inner monologue) the Gakowski family..oh wow... That poor family. Such a crap time. How awesome that everyone is being so kind. Great friends who have their back.. Must be tough to face that news though... Look at those boys.. So brave. So funny. This must be so hard for them to fathom.. And look at him. He looks really well. You'd never believe it unless you knew them, hey....

Detach.

Compartmentalise.

Apparently these are really good tools in my resilience tool kit. For a while at least... 

And when the inner monologuing, detatching, compartmentalising  chick gets slapped down by reality Suz... Well, then that "wall of catastrophe" pops up. 

Sometimes reality Suz jumps over the wall and gets a bit of a graze on the ol' shins.. She smashes that wall of catastrophe and keeps powering. She is positivity personified as she sail over the wall. 

And sometimes she face plants.

Belly flops.

Is entirely shattered.

The catastrophic wall looms in countless storeys and reality Suz tries to claw her way up and over it. 

The therapist calls this 'catastrophising'. Allowing your imagination and thought processes to go there. Go to the worst case scenario and linger there for a moment. Stand in front of that wall of catastrophe. And once there, start to work a plan. See the tradgedy. Listen for the sadness. And then work a plan. 

I've always said that I refuse to allow myself to go there.. To think about what might be coming. I refuse to grieve now for what hasn't taken place. That's just a pipe dream though.. Because anyone who comes face to face with the fragile nature of living must fully come face to face with what that fragility truly means. Stand there and look it in the eyes. This thing of grieving is to stand and stare at this wall.

The challenge is to face that wall of catastrophe and not be owned by it.

To maybe face plant or belly flop and stand up, brush off the bits of grainy, gritty wall that cling to you. To not be consumed by the catastrophic.

I hit the wall recently. 

And when I say hit.. I actually want you to imagine me hurtling towards a 50 gazillion, 34million and 23 hundred storey wall that is made up of ugly brown rocks. Each rock is designed to inflict that feeling of catastrophe.

And when I hit it, everything hurt.

My positivity vanished.

My body pained. 

I was so sad.. And weary. 

At one point I was lying face down on our bed. I couldn't move. Sheldon came in and curled up next to me and asked me what he could do to help. 

Well... "Don't die and leave me alone" came to mind.

"I want my mum.." That followed a close second.

I said nothing. Not because I was being kind by not putting my unfair request on him, but because I couldn't find the strength to talk. 

Inner monologue chick made her timely appearance at this point of my weary paralysis. 

"Look at her.. So much for all that peace, faith, grace and hope she preaches about. She can't even answer a simple question." 

And from the place of weary paralysis at the foot of the wall of catastrophe, reality Suz made her slow and not-quite-heroic comeback. She slapped down inner monologue chick. She could because she found something at the bottom of the wall.

 She found that it's not a sign of faithlessness to be sad. 

She discovered that being tired is ok.. It means you need to take some time to become un-tired.

I realised that the grace I've been talking about looks like this: it looks like me.. Lying in paralysed weariness and such deep profound sadness and being ok. 

Being ok. 

Being ok to be sad.

Being ok to be tired.

Being ok to hate cancer and hospitals and chemo drugs and palliative care and funerals- the ones that I've lived through and the ones I will survive.

Being ok.

And then, when I realise that I'm ok.... that here..HERE... was that grace to be able to breath through this pain, I got up. 

And I had a cup of tea.

And I hugged my boys.

And I had a good cry.

And I breathed.

Here's that grace that I found in the shadow of the wall.

I have this really beautiful friend.

We've known each other for 17 years. 

She is phenomenal in her ability to listen when I can't find any words and hear all the things I'm trying to say.

She's also a gun preacher.

I heard all of 15 seconds of a preach she gave last week. (Oh insta.. How I love thee..)

She talked about something really profound to do with how hope is daring and plain downright crazy. And how the problem is we want the eagle of hope to swoop in to that shadowed catastrophe place and carry us away. The helicopter of hope. 

But hope is rarely about changing the externals of the situations.

I was still lying prostate in a state of paralysed weariness when hope found me. 

When I hit the wall and my emotional, physical, mental and spiritual wellbeing was hanging by a tenuous thread, it wasn't the eagle of hope that took the shadow of the wall away. The catastrophic still remains. The pain lingers and we are faced with the unknown..literally. We don't know what's going on or what to do. 

But, just as grace was found in the shadowed place, that's where hope shines. Because hope is an anchor.

An anchor that steadies in the storm.

An anchor that is steadfast in the changing.

An anchor that holds tight in the shadow of the wall of catastrophe and reels me towards a lighter place. 

So. 

I hit the wall.

And I suffered through the shadows. Until I found the grace to get up and I knew the steadfast anchor of hope.

And I'm ok with that.

These days..

When we married, we did so with the knowledge that children were possibly and quite potentially out of the realm of reality for us. Sheldon had already been through the rigours of a cancer battle and I had, well... dodgy, uncooperative ovaries.
We talked about it- long and honest conversations that always ended with the promise that all we truly needed was each other. We would then turn our attention to the map of Europe that was blu-tacked to the office wall and plan the great trips we would take.


We married on- quite possibly- the most humid day in the history of North Queensland humidity. I wanted the works- the dress, the pastel softness of carnations and mountains of tulle. I got it all. I laugh at her- that young bride and shake my head when I recall the demands she made in an attempt to have the ideal wedding day- and it was. Ideal.
Not perfect- but so very fun.
The church bells that rang as I arrived in my veiled glory. (yes... I know)
The drunken goldfish.
The jazz band.

Such a lovely day.

We began married life and I had this plan that we would work for a year or two and then pack ourselves up and travel- we wanted to see Russia and Poland. We talked about eating Belgium chocolates in Belgium and drinking German beer in Germany.

And then suddenly.
I had these plans to fill our childless state and then suddenly we were pregnant.
I can honestly say that I thought I was perfectly fine with the idea of possibly never having children- right up to the moment I found out that I was pregnant. The overwhelming tidal wave of relief and desire to hold that child in my arms just about floored me. I wondered if I had been lying to myself when I said I didn't need a child- to protect that part of me that wanted to be a mother. I don't know.




Well- one miraculously unplanned and unlikely pregnancy and subsequent bouncing, gorgeous baby boy was soon (very, very soon) followed by yet another miraculous, unlikely and unplanned pregnancy. Except this time there were two bouncing, gorgeous baby boys. And then suddenly we had three babies.

And we never travelled. We put the map of Europe away and replaced it with portraits of our boys. And we didn't mind. Not one bit. We didn't need to see the universe when ours revolved around our three sons.
And we tucked the travel bug away with promises that when the boys were grown - then we would be that totally fit and amazing couple in their 50's who travelled and sent home postcards from Germany where we would drink German beer- and we would actually really appreciate it, you know?.. Because we were older and wiser.

And then suddenly...

I'm not working at the moment.
I have taken the option afforded to me by my employer to just be with him.
We have spent more quality time together in the past few months then we had in the years of health and business of that before cancer life.
It's been lovely to just be with him.
Sometimes, when we are deciding where to eat lunch, I pretend that we are old and retired. That our sons are grown and settled  in their own lives. I sigh that they are just too busy to call their mother. I imagine that we have just come back from our most recent trip- we spent a few weeks touring cathedrals in Venice- and then suddenly.... I wryly smile as I thank my imagination for the chance to be old with him.

I know.
This is a really different tone to most of my writing.
I know.
I sound quite morose and...sad.
Well- sometimes I am.
Sometimes I'm so angry that I can't even function.
Sometimes the tears just don't stop.
Sometimes I'm so tired and wrung out that I can't even... I just can't even.

Not always.
Just sometimes.

This has been a week of rollercoaster type ups and downs. The extremes of these emotional demands has taken a toll on our family..
A rollercoaster of a week. And not a slightly dipping and weaving rollercoaster- no. It's Buzzsaw at Dreamworld.. It's the Tower of Terror. It's sharp and sudden and unpredictable and I want to go through it was my eyes squeezed tightly shut as I fight the urge to scream "Just stop!! I want to get off!!!" 

Sheldon was in hospital last week to deal with severe and debilitating pain. He spiralled quickly and looked terribly sick. After the palliative care team had given him the pain killers that he needed and the Do Not Resuscitate forms had been signed, I kissed his head and told him to sleep. I slowly walked towards the car with the knowledge that "it" had probably started.
"It"... the end.

I cried as I drove home and I catastrophized.. prepared myself for what might come.
I prayed...I sighed these wordless prayers that God has come to expect from me.

When I got home, our eldest son was still awake. He crept out as I sat, wilted and spent, in the lounge room.
He asked, in a quiet whisper, where his dad was. I saw it- the same expectation of the worst to come.. right there in his eyes.
He 's 9.
Not even double figures. And everyone knows that you don't have to grow up until you hit double figures.
"Dad's fine." Was it a lie? I waged a battle right there and then. What weight can I put on these little lives? How much of my personal pain and upset can I show them without weighing their already burdened hearts down?
After all, I reasoned- he's not an adult, able to shoulder the burden of these days. But Sheldon said we were never to lie to them.
"Dad's been in pain... a lot of pain. The pain is caused by the tumours in his liver. He's resting now. We'll check to see how he's feeling tomorrow." Honest. Straight forward. The facts, Just give them the facts. Children can handle the facts.
But this boy...he's my son. He's part of me. Created from me and he knows me. And so, he put his arms around me, patted my head and consoled me. He whispered "I'll be your strength, you be my strength.."
I cried.
What false idea did I have that my adult-ness could bear this burden better than a 9 year old? Because here was that idea in it's undoing.

That was a tough day.

True to the manner that we find our lives unfolding, the next day was a great day. No reasonable or predictable path here.
The dreaded end stage of the night before seemed to have tucked it's tail between foul cancerous legs and scurried away.
In mere hours we were catapulted from staring down the harrowing days of morphine packs and measuring pain and I walked into the palliative care ward to find my husband, bag packed, feeling great and eager to find some decent food.

So we left hospital and found him some suitably decent food.
That was a good day.

See? This is the way it is.
Rollercoaster days. Tough days that are gut wrenching and horrendous in the toll they take. Rollercoaster days. Great days where we can push cancer back.

This morning, pain woke him up. I knew it as soon as I opened my eyes. The stiff way he sat on the edge of the bed. The stilted way he told me that he needed something for the pain. I was instantly awake. No caffeine necessary.
"If it gets worse, take me to the hospital..."
We waited to see if the collection of pain killers that we have available to us here would do their job. When he is in pain, their job is to get him out of pain and keep him out of hospital.
They worked.
It was an okay day.
It could have been worse.
It could have been better.

Tough days.
Great days.
Teary days.
Angry days.
These are the days we walk.
But hey- I'll take them any way they come, because I get to have these days with him right here.

Grace for this...

We are 10 weeks past that day. The day that we were told that options had been exhausted and we were walking on a time limit.
I spoke to someone last week who was aghast that we had been given an end date. They likened it to the act of the witch doctor pointing the stick. Does it actually, physically mean that death approaches or does it just mess with your mind??
I don't know.
Some days I'm glad we know.
Other days I want to forget.

We have had a marvellous 10 weeks.
We have crammed so many living moments, so many memories and laughs into the 10 weeks. Trust me- there was no big sigh and a shrug of the shoulders in defeat.
No... that's not his way.

Well.. today we are faced with a new layer of experience.
Sheldon has been virtually pain free throughout the years he has carried this scourge of GIST.
Even last September,  when the very large tumor was removed from his abdomen he experienced minimal pain. A few twinges and aches but he managed to cope really well.

So it's been a bit of a steep climb to come to terms with the consistent pain that has plagued him through these past days.
It's meant sleepless nights as he tries to get comfortable.
It's changed eating habits because he just doesn't want to add any pressure to an already painful abdomen.
We know, in the back of our minds, that we have a palliative care team at St. Catherine's as an option... as a fall back when the take-at- home drugs just arn't enough.
But- let me be really honest - it's an option we both don't want to access just yet. Because it's hospital. No... we can do hospital. This is different. Hospital means fighting. This is palliative care.
And it's scary.
And it feels like defeat.

I've read enough blogs and stories about end stage cancer care to know (cognitively) that all of these reasons are poorly founded.  I know that it will be a relief to have better management and support.
But knowing  something at a cognitive level and translating that to emotion and action sometimes takes time.
So we take some time to process this.
We visited our doctor yesterday and he completely understood our reservation towards this next step. And he calmly gave us scripts for longer lasting pain killers. And he painted a scenario where we might find ourselves at St.Catherine's. And it didn't sound remotely scary or upsetting.
I guess that's because there is grace for what comes next.
Just like we have seen and walked in grace these past days and weeks.
And last night, armed with the new regime of painkillers, he slept well. He feels ok. Which means we are coping today.
And hopefully that will be the story tomorrow.. and for the tomorrow after that.
And at the moment in one of our tomorrows when we need to stop the pain with stronger drugs... well... There is grace written all over that day.

Kindness Wins

People have been asking how the boys are going. It's something that weighs on my mind. Alot.
I'm watching them.
Are they coping?
Crying at seemingly ridiculous things? (Matthew can't get his laces to do up on his school shoes - melt down time)
Sleeping okay?

We have our moments.
Sometimes the graciousness of forgetting means that they live like Daddy will be around forever.
And at other times they know. They cuddle a little longer.
They linger around him and ask questions.
The other night while Sheldon was tucking them in, one of the twins asked him if he was still dying.
I can't bear it in those moments.
The burden crushes me and its all just too much.
But then we had our Saturday of kindness.

We saw and watched as the crowd grew.
People we see everyday and  some  we haven't seen for years turned up.
Put aside their agenda for the afternoon and came to walk for us.
When our boys reflect and remember these days that were amongst the last, this day will shine.
It will overshadow the days of pain and sadness.
Because kindness wins.

We talk alot about cancer being a battle.
And it is.
We fight.
We rally warriors.
We bunker down in trenches of hoapital wards and chemo units.
We win some.
We lose some.
And in these current days we are walking  through, it's sometimes easy to concede ground to cancer.
I see subtle signs.
It's the thief that steals that energy he always had.
And it's easy to be sad.
And angry.
And despondent.

But then we have a day like Saturday.
And the tide turns.
The battle weary despondency drops off  our shoulders, a weight that I'm glad to see go.
Because something happens when we know that people have our back.
Something beautiful.
Something profound.
Something that feels alot like grace. And hope.

And so.. how are the boys going?
They marched with an army on Saturday. They pushed back the dread of cancer and the threat of coming days.
They laughed and ate countless icy cups.
But most importantly. They saw kindness personified.
They knew what it is to be utterly surrounded by Kindness.
Kindness wins.

Thank you.