Friday, May 22, 2015

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.












Monday, May 11, 2015

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.

Sunday, May 3, 2015

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.