It's not fair that where I choose to live affects my cancer outcomes

I have spent four years travelling between home and the Austin to see my haematologist - a day off work for a twenty minute consult. The local pathology sometimes gets confused by my specialised blood tests and I once had to go three times to give samples because they made mistakes sending the samples for testing. More than once the results haven’t made it to my specialist. If I was in the city it would only be an hour or two and the path would be done correctly.

What's in the bucket?

One of the "Apostles", Port Campbell National Park.
Not so big that you can't fit it into a bucket.

It’s now just over four years since my blood took a dislike to me and decided to try and kill me. I’m not sure what I did to upset it; I took it to nice places, the best restaurants (well, the best of the middle to lower range restaurants). I’m sure we could have talked it through, sat down and discussed what was upsetting it’s little white cells, but no, it just seemed to want to mutate.

I am fortunate in some respects though. The rest of my body seems to have stayed on my side of the argument. My kidneys, liver, heart, brain are all playing together nicely. It’s just the bloody blood that’s cracked the $%#@ with me.

 
Before chemo came to the rescue with its arsenal of TKIs, four years was about how long it took for blood to win the battle and wipe out everything.  For some people, the TKIs don’t work as well and they still lose. There’s a Facebook group I sometimes look at – a closed group only for those who suffer from CML. And there was a ‘death in the family’ in this group recently. No-one I’ve actually met or really know, but someone I feel for; the pain of the hospital, a pain of having the treatment fail, a pain I have so far escaped.  

The woman who died had a bucket list, which included visiting the Great Ocean Road through the Otways and seeing the Twelve Apostles. I spent much of my youth surfing along the Otway coast – places like Lorne and Wye River. I loved the way the mountains dropped down into the ocean, the rivers that fell out of the hills in numerous waterfalls before carving out valleys into bays, and the surf that broke over the reefs that guarded the bays.

I haven’t been down that way for many years but I still remember that sitting on the Wye River pub balcony after a day surfing is as good as it gets. And I’m glad I learnt that, experienced that, before my blood turned sour.

I understand the idea of the bucket list but I think it’s important to remember what has already been ticked off as well as what is waiting to be experienced.

Goldfish Bottle Blues

This isn't really relevant to anything much, but I had some fun on Friday doing a guest spot at a friend's gig. Here's a YouTube link.

CLICK ME =>  Goldfish Bottle Blues

Episode 13: Eyesight to the blind

One of the joys of having a critical condition is the extra medical attention you get, monitoring the disease. In this way, the medical world can uncover a whole range of other problems and so I now have pills to counteract the side effects of the pills I have to take to counteract my disease. And I have had laser beams shot into my eyeballs that I wouldn’t otherwise have known was necessary.

I awoke early with the sun streaming brightly through the window. My plans for the day were simple – a haircut and then off to work. The haircut went smoothly – hopefully not much can go wrong there – and I arrived at work.  The phone rang.

“It’s XXX from the hospital. We can fit you in for your eye surgery this morning.”

“Eye surgery?”  

Dr XXX has bought his machine in today and can do the laser surgery this morning. We’ve had a cancelation. Can you be here by ten?”

“Um, yeah.”

One of the side effects of my treatment is itchy eyes. I saw my GP and he recommended I see a specialist and wrote a referral. After a bit of prodding and testing I learn that my eyesight is fine, a bit of hypertension in the eyeballs, and the itchiness was due to the drugs. Here are some drops, we’ll make another appointment to follow up. No problems.

The second appointment came and my eyeballs were still over the normal pressure. I placed my head onto a machine and the doctor looks around my eyes. Something isn’t working as well as it should.  We can fix that, he says. Yeah, okay, I think.

My third appointment: laser eye surgery. I am sitting outside the consulting room wondering what the procedure is. When I get in the room, the specialist tells me it is just a matter of firing lasers into the back of my eyeballs, take about fifteen minutes. Do I want to go ahead? Um, yeah.

The procedure entailed a thing being put on my eyeball so that all I could see were little red dots. Then the laser would go off like a small bolt of lightning hitting somewhere inside my skull; the red dots disappeared briefly and then returned, then another lightning bolt, and so on for fifteen minutes (and $1000 – thank you Medicare).

My eyes ached. My skull was being struck with a variety of hammers, and a large beast was gnawing at the inside of my skull trying to escape, and I spend the rest of the day wearing my sunglasses, despite being inside. I can see as well as I could before. So, was it worth it? My next appointment is in week or so. Hopefully there won’t be any more surprises.

Invasion of the Elephants!

A mob of fifty elephants has invaded the city. They can be spotted on street corners and in hotel lobbies and all sorts of strange places. Here's some of them.

THE CITY IN MALI

HUMANGERIE

MALI, PROTECTOR OF ALL ANIMALS

MING VASE

NIGHT AND DAY

PATCH

SPOOKY POSSUM

TIGER MALI

WOOLI

KEVIN PRESLEY

SELF-PORTRAIT

They are there because Melbourne Zoo is turning 150. The model for these is Mali, a two year old elephant at the zoo. The self portrait is one she painted. The rest where done by various humans.

Episode 12: Of Mice and Men

It is just over two years now since the mutant blood army invaded.  They have been hammered by a variety of weapons of chemical warfare but small pockets of resistance remain.  I can feel them sheltering deep in the marrow of my legs, sharpening their swords on the insides on my bones in preparation for the coming day’s battle, vowing to avenge the deaths of their lost comrades.

My fingers ache. I can picture all these little white mutants gathering in there. And then the order goes out to “fix bayonets” and with military precision they all start jabbing my bones while the Captain yells in a plummy mutant accent “C’mon , you call that jabbing do you? You can do better than that”, until it feels like some gangster has stomped on my knuckles.

Other squads of crack mutant troops move around my body. They rest during the night and spend the morning creeping around, hiding from the dreaded Tasigna beast that will devour them on sight. Some find their way into my stomach with bile bombs to ensure maximum nausea. Others head to my brain and fill it with a gaseous fog that makes me want to sleep, while others detonate itchy bombs behind my eyeballs.

And all the time I know they are experimenting deep in their stronghold in my bones, seeking a new soldier, a new mutant force to rise up. But the Tasigna beast knows where they live … and they can’t hide. “Tassie” is a good soldier, grabbing each mutant, kicking them in the tyrosine until they lie on the ground crying for their mummies. But there is no pity for the mutants and slowly their troops dwindle. Soon there will be none left, all mutants banished.

The war is taking a toll but I am holding up well enough. My heart is still in it, as is my liver and various other body bits.
MEANWHILE …
MELBOURNE scientists believe they have found a new treatment for blood cancers that will spare patients the unpleasant side effects of chemotherapy. The new drug … has shown promising results in mice.
Wish I was a mouse …


To read more about the new drug ...

http://www.theage.com.au/national/drug-may-avert-chemo-side-effects-20120709-21rs4.html#ixzz20CMq9yHC

Hit the Deck!

In summer I am a firefighter – bushfires – and over the summer fire season I have weekends when I am on stand-by, confined to home ready to go to work should a fire start. It is a great time for doing jobs around the house. Last summer I planned to refurbish the back deck, which was in need of a couple of new stumps and bearers and joists and other things I know nothing about in order to stop it falling into the rose bushes. Step one was to pull up the old decking and see what was underneath. Then I put in the new stumps and replaced a few bits in the supporting structure. The last step was to nail down the new decking. I put in the order and the timber arrived – last week – in  May, late Autumn, heading into winter. My summer job is in danger of becoming a winter job.

An Eastern Spinebill - they appear in the backyard when winter starts and it is too cold in the hills for them.  I was sitting on the half-made deck when I took this photo.

The old decking is being fed slowly into the fire to keep the house warm while I am outside laying the new decking; drill then nail, drill then nail; playing with power tools and hammers and chisels and saws.

The drill is an old one my father gave me – one of about three. It’s a good quality beast. The only thing it won’t do is unscrew as my dad glued up the reverse button many years ago.  The hammer I am using was also given to me by my father. I have five or six hammers, none of which I have bought. He also bought me the saw I am using – one of three he has given me.

The chisel is mine.

My father was a carpenter by trade.  If I ever asked his advice in anything ‘house construction’ or vaguely carpentry-like he would take over as my work wouldn’t be up to scratch.

Late last month my father died. He was 81 and his health had been poor for a while. A smoker for many years, he spent his last years with a machine by his side that could suck the oxygen out of the air for him and deliver it via tubes and things. In the hospital it was a direct connection to an oxygen bottle turned up as far as it could go. Slowly his breathing grew shallower until there was none at all.

The following night a storm brewed and there was thunder. We joked that it was probably my father arriving in Heaven and complaining that the tucker wasn’t up to scratch, or it was served a bit later than he wanted, or that the chairs weren’t comfortable enough. Sadly, he went through his life with things never quite the way he wanted them to be. I heard him complain about the topping on a pavlova. “Strawberries!  No, I don’t want a slice; should be banana on a pav.”

We are all an accident of our upbringing; our attitudes and approach to things. If I learnt anything from my father it was not to be like him – not to wait for things to reach my individual definition of what they should be. I learnt the importance of accepting (and hopefully enjoying) what’s offered. It’s not about accepting mediocrity; it’s about accepting things for what they are.  It’s not always easy though.

My father was grumpy a lot of the time and my childhood memories are greyish with only occasional flashes of colour. He didn’t take me to the footy or camping; he was always too busy with work and stress and anxiety. But he tried. Where we did connect he helped. At high school I did an elective in photography and developed an interest that continues today. My father gave me his camera, and a lens with macro and telephoto functions that became a favourite, and filters and a range of other gear. I still have the lens, which is sadly growing mould inside and of no use anymore, and the camera, which has also stopped functioning, even if I could get film.

My partly constructed deck, worked by me using his drill and his hammer, is flat and the boards evenly spaced. I have hammered in lots of nails and only bent one so far. I have used all sorts of tools and haven’t injured myself or removed any fingers.

I think my father would be pleased.