Life without you

November the sixth.

The calendar this morning reminds me that it is two months since you died
I sit and stare at it and can’t comprehend
How I sat there next to your bed and you slipped away

And like that morning, once again tears stream down my face
I choose to wipe them away this time so that the kids can’t see them,
Not that I’m ashamed
Just that I don’t want my melancholy to disturb their joyful laughter.
They need to get ready and go to school.

Last week I looked back at old emails we had exchanged,
Pictures of us at Christmas past -
A photo of a bending tree, kids smiling with presents.
Our joyful life before cancer,
Before chemo wrecked your feet,
Before neuropathy swelled your arm,
Before the horror of a mastectomy and the removal of your ovaries.
Before the pain and hope and expectation           
And disappointment
Of a dozen different treatments
A life before Xeloda and Tamoxifin and all the others
You never complained, you said it “Didn’t matter”
You just wanted something to work.
Nothing really did. Turns out that it did matter. 

Christmas is going to be strange without you this year my love.
People tell me that I’m doing well.
I don’t know if that’s true,
I’m living day by day, I’m surviving.
The kids driving me on.
I tell myself it will be ok.

The noise of the children's laughing returns.
Audrey finishes the chapter from her fairy book,
Eli brings his teddy bear to the table
The toast pops up from the toaster
“You ok Dad?” Audrey asks.
I lie to her in the affirmative.
And so another day,
Another roller-coaster day begins.

I look at the children.
Their happy smiles and scraggly hair,
Their bashed up, school-yard knees.

They are the pot of gold at the end of your rainbow.

I miss you so much.

 

Twenty one days later

So how do I pick up from here?

Here are the facts I guess.

My beautiful wife, Amy died on 6^th September, just after 7.10am on a frosty but calm, Saturday morning in Canberra. Just eight short short days after getting the advice that there were no longer any treatments that could help fight the cancer.

Amy had been sick on Friday night and after a couple of visits from the palliative care nurse a decision was taken to rush her via ambulance to Clare Holland House (the hospice in Canberra).

I drove our car behind the ambulance while Amy’s sister Catherine sat with Amy.

Amy was incredibly weak when we arrived but still lucid and talking to us both. The palliative care nurse told me that she might only be in for the night and might be able to go home in the morning. I asked a few people after Amy’s death whether the nurse only told me that to help me out, but I was told that it was probably what the nurse believed at the time.

Catherine and I stayed with Amy throughout the night, her Dad, Mum and brother Ivor joining us in early morning. It was a long strange (and terribly sad) night. 

The nurses administered pain relief to help Amy. Having watched her give birth to our two beautiful children without pain relief of any kind I knew that the fact that Amy said she was in pain was enough to know that she WAS in pain, she was so so so strong. Amy slept for most of the night after they’d given her the drugs and then after a few hours her breathing changed, becoming shallow and less frequent before she died.

It was beyond awful. The absolute heaviest and deepest sadness I have ever known times one hundred.

Even in those last few fragments of time I hoped that Amy would wake up, spend a few minutes chatting. Right now I’d trade everything - absolutely everything I own for another five minutes of her company.

I brought the kids to see their Mum after she had died. Just strange. They didn’t stay in the room with her long. How unreal to see your Mum lying dead when you’re so young. As they ran out I turned to Amy and asked her to get up and come home, but she couldn’t. I cried some more.

So then a course of events which even though only just over a week or so ago seem blurry and lost in time. The funeral. A nice memorial. So many people probably 200.

Amy you were so loved, the enormity of your death sent ripples not just through our little local community but throughout the whole world. I received literally hundreds of tributes from people who knew and loved you.

The wake was probably the most amazing part of the day. The school mobilised into action, parents serving plates of food, ABBA and Duran Duran playing in your honour. Kids running free in the sunny evening. The only thing missing was you dear Amy and I know you’d have enjoyed the community, the support, the unity, the love. Thank you everyone.

And so everyone comes back home. Me, Audrey, Eli but not you.

The last couple of weeks have been so strange. I keep expecting you to come home from the shops. I want so much to hear you laughing in another room, chasing after Audrey with a hairbrush, tickling Eli on the bed.

There’s only three towels in the bathroom now, three toothbrushes. After all these years I’ve discovered it was you who swept the crumbs away under the kid’s seats and pushed their chairs in after meal times. I hadn’t noticed until now. Sorry.

There’s a million reminders of you around the house. Your shirt tossed on the top of one of the wardrobe doors, your sandals at the end of the bed. I don’t have the strength at the moment to imagine that you won’t be wearing those again while you take the kids to the park. The pictures on the walls that we chose together, your favourite mug.

Following a few requests I put together a website (amyhickman.com.au) I’m not sure if you’d have approved, you never really liked much fuss.  

Before you died you started a ‘memory box’ it’s got pictures and letters in there. I know it’s incomplete, time ran away so so fast in those last few weeks. I tried looking through it today, so many lovely pictures of you and the kids. Happy times. You’re so beautiful Amy

So now I have to work out what ‘normal’ looks like. Try and comprehend how life looks without you. 

The kids need me to help them, equally the kids are helping me. Eli cried a lot last Thursday, he brought me a book to read because he knew it was one of Amy's favourites.

In what turned out to be your final week Amy and I lay on the bed and cried about how we wanted to get old together, I’m struggling to come to terms with the knowledge that it won’t happen now. 

Your death weighs like a stone in my heart. 

Update on Amy

Last Thursday we received the terrible news that Amy's cancer treatment wasn't working. It didn't come as a huge surprise as Amy's health and general wellness has really deteriorated during the last couple of weeks.

The oncologist strongly advised to stop treatment, in her words, Amy was facing a "brick wall". There were another couple of options open to us which the oncologist advised against - neither were 'miracle cures', both carried awful side effects and in Amy's condition may well have shortened rather than prolonged her life.

Amy had thought a lot about it and took the decision to stop all treatments. Her body is tired and battle-weary- more than I can possibly describe. We've both lost count of the number of radiation sessions, hormone therapy and chemo's that she's tried (and that's aside from a number of operations). Nothing has (really) held the progression of the cancer up.

It means that Amy will now only live for a few weeks, possibly (at a push) two months until her body shuts down and she dies.

I can't tell you how heartbreaking this is for all of us. We reflected on it yesterday and more than half of our seven year marriage has been under the shadow of  cancer - a disease so awful there's no metaphor to adequately describe its horribleness.

Every day throughout this I have been amazed by Amy's strength and bravery. The oncologist remarked on how dignified Amy has been throughout this whole terrible chapter and what a beautiful person she is, and I can only echo that.

I love you so much Amy. You have always been the lid to my pot, the love of my life and nothing will ever change that.

The down and downs of secondary breast cancer (from my perspective).

I’ve been meaning to write something to temper some of the posts on here which seem to make out that our life is a jolly series of outings and happiness. I wanted to put into words the shadow that is hanging over us.

As most of our friends (and/or readers of this blog) I’m sure know, Amy was diagnosed with breast cancer at the end of 2010. Since then she’s been through a mastectomy, had her ovaries removed and (for good measure) had her gall bladder taken out too. 

She’s had a horrific and un-ending cocktail of drugs, chemotherapy and radiation every one of them taking its toll on her poor (yet incredibly strong) body.

When Amy was diagnosed my knowledge of cancer was minimal (and I’d actually worked for a cancer prevention charity for a few months as well!) so what chance the rest of you? Why should I know anything? Cancer hadn't really "touched" my life. Aside from a couple of sad sad instances as a child I didn’t know anyone with the disease – it was something which happened to other people not me.

Now I realise even the phrase "touched" by cancer is a joke -written by someone trying to soften the blow of it all or a marketing wizard who like me didn't have a clue. Cancer doesn’t “touch” your life it pummels your very existence and then kicks the shit out of you. 

Everywhere you look there are stories of people who have "beaten" cancer or people who are cancer "survivors". We donate money and "hope" for a "cure". The whole world of sadness is masked in a big pink veil trying to pretend it’s all a tough, but ultimately winnable "journey".

In one of the first conversations we had with the oncologist 3½ years ago she told us that Amy would never be “cured”. Amy’s cancer has metastasized. In case you don't know (and I didn't) that’s a big medical word for ‘spread to other parts of her body’. It’s not something you hear much about when you’re buying your pink ribbon or chucking five bucks into a bucket to buy a daffodil. It’s hard to explain to people when you talk to them. In return they tell you stories of people who were sick but then had a miraculous recovery and ended up running marathons. I think they do it to make you feel better. It doesn’t really, but it’s a nice thought I guess.

In the last few weeks Amy has grown steadily sicker. As well as cancer in her bones – spine, shoulders, hip and knees the cancer is now in Amy's spleen and worst of all her liver. When you look at a body scan which highlights where the cancer is, Amy’s body lights up like the milky way.

A few weeks ago oncologist told us that Amy may die soon and we should tell the kids.

Audrey (aged seven) and Eli (five) are amazing really. As long as they can remember their Mum has taken weekly (often more frequent) trips to the hospital. Not many Mums have to do that. To our kids it’s the norm. To sit with them and say that their Mum might die soon, and not be there for them as they grow up was heartbreaking. We all sat and cried.

Amy’s now on a much stronger chemo. Don’t press me for the name of it. I’m useless at that sort of thing. Amy is fabulous – she knows the name of the drugs and more significantly maintains good links with others who have each taken a wide array of assorted cancer drugs and understand about side-effects (always horrible). Occasionally good friends she has through networks she has built up, die. They are always lovely people, and almost always young and with families.

In the last couple of weeks it’s started to look like the chemo Amy's on isn’t working how it should. Amy’s blood count readings (which she has every three days) have increased (following four or five weeks of "good" readings) and the oncologist is at a loss where we go now. There are "other" treatments but all of them will damage the liver. Amy’s liver is already knackered. Amy has been exhausted for days and had so little energy for someone who is naturally so active.

I’m trying to take the kids out as much as possible to give Amy as much rest as possible and I guess in part that's what this blog is recording. Even that's tough though as then it leaves Amy to go through some of this alone and I hate that. I'm trying to cook when I can, wash and iron when I can, in a desperate effort to give Amy as much rest as possible, to allow her body to go through one of the miraculous recoveries people tell me about all the time.

I don’t know what the next few weeks will bring. I’m scared and fraught. My lovely wife is dying and despite everyone’s help support and kind words nothing can put things back the way they should be and I can’t do anything to stop it.

Amy's stubborn (a good thing in this instance) and I know she'll "fight" (another favourite phrase people use) but equally I know some battles you can't win however hard you fight.

Audrey's 7th Birthday

Audrey had been excited all week in the lead up to her 7^th birthday party.

In truth her party was relatively ‘low-key’ a pizza lunch at nearby Hellenic Club with a few of her mates, which compared to some of the other grand birthday productions we’ve been to as guests during the last seven years, hardly registered as a party at all.

In the build up to the party the number of guests had swelled dramatically from an initial two to six (nine kids in all once you added in siblings) still, it was a manageable number and meant we could easily accommodate a grown-up’s and kid’s table.

Audrey had added in the requirement to come dressed as a Princess and had constructed a written party-plan of party games, party food and the requirement for people to come both for lunch and evening meal(!) All of which were in her head not ours!

Her mates came – dressed up as princesses and they all had a crazy time on the ball-pool/climbing frame area in the club. There are much bigger climbing frame/ball park places in Canberra but Audrey seems to like it at the Hellenic so who were we to argue?

Audrey sported an Elsa (from Frozen) dress. Elsa is a BIG hit amongst girls aged 3-10 and all of Australia’s toy shops were sold out of dresses which had driven me to make my own using our sewing machine. The material cost me less than $20, but the two evenings I spent swearing and trying to drive the sewing machine made the dress much more valuable than the money I paid for it. Either way Audrey loved it, wore it proudly and looked beautiful in it.

We had a few tears at the end from the party-girl (when people started to leave and Audrey realised that her guests weren’t going to stay for 24 hours) but she soon got over it. Presents and party bags were exchanged and everyone headed home.

Audrey started planning her 8^th birthday almost immediately.

Audrey in her Elsa dress

"Frozen" Birthday cake

National Science Week - Dr Graham Blow Up Science

I took Audrey and her mate Sophia along to Dr. Graham's Blow Up Science - a fabulous hour of free science put on at the Australian National University as part of Science week.

Dr. Graham was a great entertainer and had great fun with nitrogen (exploding huge balloons using the vapour given off by the chemical) and hydrogen (blowing up stuff). In between he fired ping pong balls from a leaf blower and marshmallows from a vacuum cleaner (they went a LONG way)

The two girls spent a fair amount of time cowering under their seats. The show's climax was a huge explosion where Dr. Graham exploded a coke bottle and covered the explosion with soft toys (most of which ended up decapitated by the bang). A really nice afternoon out.

waiting for the show to start.

a BIG bang!

making clouds by adding boiling water to nitrogen

Unicycling

Me having a less than convincing attempt at unicycling at the National Museum of Australia