Monday, August 18, 2014

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 7th 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 8th birthday almost immediately.

Audrey in her Elsa dress

"Frozen" Birthday cake

Saturday, August 16, 2014

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


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

Uriarra Crossing

I took the kids out to Uriarra Crossing with some friends and their kids on Sunday afternoon and we had a lovely barbecue by the river.

It's such a nice spot there, one of my favourite places in Canberra

Giants v Kangaroos

I was lucky enough to win two tickets to the Aussie Rules (AFL) game at Manuka Oval through the wonderful folk at VisitCanberra and so decided to take Eli along for his first experience of sport played in front of a big stadium of people.

The 'home' side GWS Giants play three games a season in Canberra and this time they were pitched against North Melbourne (Kangaroos). GWS Giants are newcomers to the Australian Football League whereas the Kangaroos are one of the oldest (having been formed in 1869). What that means in practical terms is that the Kangaroos are an established team (having had a golden period in the 1960s) whereas the Giants are just really finding their way. The Giants have a young squad and are tipped to develop into something big in four or five years time whereas the Kangaroos are already there.

We had great seats and despite being winter the weather was a sunny and warm 14 degrees. The match kicked off and Eli (rightly so) started asking me what was going on. I think this was the third or fourth AFL game I'd been to but to be honest I'm still a bit sketchy on the rules. I turned to the chap next to me for help but he said he'd not been to an AFL game before but luckily the lady to my left shared a few more detailed pointers.

As all AFL games the match was pretty hectic. There's no slow build ups as in football and scoring is quick and frequent. Whether you love or loathe the game it's hard not to be impressed with the stamina and general fitness of the players. The sport requires you to not only run, but catch, jump and push(!) competently. I've found friends brought up on AFL are always the most vocal critics when watching football(soccer) when a player dives 10 feet along the ground because they've been nudged by the opposition, there's no time for that in AFL. I guess the main reason is that when teams score 150 points there's less advantage to be had than by a theatrical dive in the box to secure a vital 1-0 win in football(soccer).

The game is also looooong. Four quarters of 30 minutes obviously with a break between quarters. I'd thought we'd last till half time before Eli would get bored, but he was transfixed and watched almost the whole match which was great.

The Kangaroos were well ahead after the first quarter but the Giants fought back to trail by only a handful of points at half time. Eli and I took a wander round the ground (Eli got freaked out by G-Man - the HUGE Giants mascot) and by the time we returned to our seats the Kangaroos had scored several goals to lead the 3rd quarter significantly.

The match finished 126 v 51 so pretty much a walk-over, but it was still good fun to watch. Eli tried to switch support towards the end when he saw which way the game was going, but I reminded him he had to stay loyal to his team as they might win next time.

I guess a lifetime of watching some of the dross served up at the Molinuex had taught me that.

Everyone loves a thunderstick! 
having a kick around at half time

Thursday, August 7, 2014

Where were they?

(Eli) "We went to St.Peters and St.Paul's today but neither of them were there."

The anger of the artist as a young girl

Audrey loves drawing. If the mood takes her she can spend hours entertaining herself with drawing and colouring pictures. It's nice to see but it does mean we have a constant scattering of A4 paper throughout the house falling from her room through to the living room and sometimes even scribbled sheets find their way into the bathroom. At one point we bought her a desk for her room in an attempt to contain it all but it got filled up pretty quickly and she went back to drawing on the floor, her bed, under the bed on the sofa etc.

This morning Audrey drew Pearlie. Pearlie is a fairy who lives in a park and stars in a series of books. Audrey loves Pearlie - I think because they have a lot in common (Pearly has a messy bedroom too).

Audrey had already knocked off a drawing of Pearlie a few days ago and had handed it over to one of her best mates - no doubt to clutter up her parent's house (or bin) and now she was desperate to re-create it for her own 'gallery'. In Audrey's mind Pearlie Drawing No.1 had been a masterpiece....a veritable Rembrandt or Rosetti. Now it was gone.

Pearly Drawing No.2 had started well. The head was drawn, skirt coloured in but the eyes, oh the eyes. Audrey drew, rubbed out and redrew the eyes a number of times. They weren't quite circular - all cartoons are based around circles - ask our kids and they'll tell you "Disney Loves a Circle" (a phrase picked up from a cartoon workshop they went to). I tried to help, but only increased the angst - Audrey sees through every attempt to 'humour her'. Eventually Pearlie's eyes were finished but now the smile.

Did Leonardo take such time over Mona's enigmatic smile as Audrey took over Pearlie's? I doubt it. Sometimes smiling, sometimes scowling Pearlie's smile was drawn over and over again as the eraser on the end of the pencil frantically wore the paper down ever thinner and greyer.

I thought eventually the artist would be satisfied, but she wasn't. A scream a shout and temper now at complete boiling point. The drawing was literally kicked and thrown around the bedroom. A terrifying sight of a nearly seven year old in full flight flinging an A4 sketch around her room. If the picture had been on canvas I have absolutely no doubt a size 2 shoe would have gone through it.

Eventually (after much cajoling) Audrey calmed down and came to breakfast. Perhaps she'll try again later with Pearlie Drawing No.3.

If she does, this time I'll stay well clear.

Pearlie drawing No.2 (mixed media)

Monday, August 4, 2014

Eli's political commentary

"Tony Abbott has a brain the size of an ant."

Winter Festival at the National Portrait Gallery

Sunday marked the inaugural (I think) winter festival at the excellently appointed National Portrait Gallery.

The day promised a day’s worth of entertainment all of it free. I often think how lucky we are in Canberra that there is a constant stream of free entertainment, from Floriade to the balloon festival and many many things in between and most of it only requiring a short car or bike ride to access it.

Audrey, Eli and I went along with our friend Rob and his two children, arriving just in time to see the fabulous fire twirling outside of the gallery. The guy was excellent and the kids were enthralled.
Having seen similar performances as buskers or at other festivals you tend to get complacent about the skills something like that takes but it sometimes pays to look at things through the eyes of a child. The chap was fantastic and probably deserved more than the polite applause he received. Audrey and Eli loved it and talked about it for the rest of the day.

There was also a great “yarn bombing” exhibition in the Gordon Darling Hall and an ice sculptor had made a fabulous statue of Douglas Mawson. Apparently it is the same image which appears on the $100 note, but as I can’t remember ever having seen a note of that size(!) I didn’t recognise it.

Afterwards there was a comedy performance by the Etcetera Duo followed up with a fashion show (in winter, fire theme) which led us around the galleries. We then did some snowflake craft with the kids and wrapped up a fun afternoon with a beer and banana bread on the terrace.

Friday, August 1, 2014

Book Week

Audrey and Eli's school celebrated book week.