The Big C

Back in 2007, I found out I had cancer.

I can’t remember the exact date. I can remember all the kitsch on the desk of the Doctor. I can remember the woman who took my bone marrow biopsy asked me to call her Granny, because everyone did, and she was great. I can remember my lunch on that day being a fillet-o-fish, with a side salad. I can remember the bone marrow biopsy going a little bit wrong, because my bone density was too high, so they had to go in a second time. I remember there was an unseasonable spit of rain. I remember asking if I was going to lose my hair. I remember most of all hearing that I had cancer, and it was aggressive, and treatment would have to start as soon as possible.

 

First week out of hospital

 
All in all it was a bit of a haze, but once those words were said, you have cancer, then I sort of blanked out a bit after that. It was like every thought was going through my head at the same time, and at such a fast rate, all that I heard was a buzz.

I was put onto experimental treatment involving arsenic, as well as the usual chemo. 95% of people who got the leukaemia that I had die. On my side was that most of the people who got it were well into their 60’s and beyond, and I was 32, and pretty fit. I had a good chance of fighting it if they hit it hard.

Fighting it certainly was a new experience for me. I had had to fight for things in my life before, but not like this. This wasn’t a battle I had a say in, I was simply the battlefield in which the war was being waged, and each side had their tricks. Long story short, after six months of in hospital treatment, I was released to start the next stage of my treatment. But like the season before my eyes, I was changed.

It was at this point a new battle started to take place, survivor guilt.

When I first found out I had cancer, the question “why me?” rang through my ears. I looked after myself, never drank, never smoked, never did drugs, yet I was the one who copped the Big C. It wasn’t so much about “it isn’t fair”, because life isn’t fair. It was about the odds of it happening, and I had done all the right things to make sure it didn’t happen, and it didn’t work.

When I walked out of the hospital after missing autumn and winter of that year, there was still the “why me?” question, but this time the question was why did I survive, when others don’t?

Survivor’s guilt is a weird thing, it really messes with your head. Every time you hear of someone being diagnosed. Every time you hear of someone losing their battle, you wonder why you made it through. Every time you see someone getting a sausage sizzle, or raffle in their name to help them with their battle, you wonder why others didn’t do the same for you, and so why should you donate to help them. After all, it’s all all a lot easier these days. The medications are better, there’s been a lot more research, and making a donation to help someone is just a mouse click away. You’ve already done your bit to beat this, why would you want to relive it all again?

Then you look at it from the perspective of those who didn’t beat it. In a way, they were the lucky ones. They didn’t have to try and rebuild their life after it. They didn’t have to go through more and more years of testing. The didn’t have to worry that every time they got a cold, that this could be the day remission ends and you’re back to fighting that battle. Would you fight it? Could you really be stuffed going through it all again? I’ve thought about it, and I really don’t think I could be bothered with it. It’s not a want to die, it’s a realisation that life has been pretty shit since it happened, and there really isn’t a point to going through it all again. That’s survivor’s guilt.

I really don’t think people understand it, and I really don’t think I’ve put it in the right words, or done it justice in trying to explain it here. It’s a form of Post Traumatic Stress Disorder. I can’t watch a bone marrow biopsy being done on televisions shows. I cringe when I see someone wearing a bandanna to cover up their loss of hair. I wonder every time that I get sick if this is it. I wonder what the point is in looking after myself at all, because it will most likely come back at some point, so what’s the use? I kick myself for having these thoughts at all, because I’ll just be viewed as a Negative Nelly, who should be enjoying the fact I got a second chance at life. This is a no win situation, because I can’t celebrate beating cancer, because I didn’t beat it, I simply managed to slip away from it when it grabbed me by the short and curlies. Like the tattoo on my back of the leukaemia cell represents, it is behind me, but it will always be a part of me. It’s a guilt from which I can’t escape. The latest research on leukaemia is that if it is below 1 part in a million, then the body can manage it. Above that, it’s treatment or you’re stuffed.

  

How Times Haven’t Changed

So I was going through the archive of my old blog, and I found a post from 2005. It was in the early days of my blog, when I had no idea what to write. That is of course unlike these modern times, where I don’t have a need to write. I digress.

Anyway, it was 100 (or in my case 107) things about me. A I read back, I noticed my views on some of the things had changed, some were still just as firm as ever. So I thought I would look back, and fill you all in on some of them.

4. I Am Not Religious.
I’m still not religious, but now I’m more informed, and I have to say my feelings towards religion have grown. I think it is one of the worst things in society, and one of the major things holding back society today. I would happily live in a world with out religion. It has been proven to be useless time and time again, yet people still cling to it.

5. I’ve been married, and wont do it again.
I will married again, but I need the laws to change first, before it can happen.

9. I have had about 40 broken bones.
Make that over fifty now. I gave up on counting.

13. I prefer my exclusive company, to the company of others.
Don’t get me wrong, people are ok, but only in small doses.

21. Cooking helps with my depression.
I still does. What is more annoying is the depression is still there. It’s a mental illness, and I have to work with it every day. There are good times, there are bad times. Since writing this post originally, there have been some very dark times, but I am still here for now.

31. I have two children, and I love them dearly.
I still do. At the time of writing this post, I hadn’t seen them for six month, after being screwed over by my ex. I still haven’t seen my kids. No wonder I get depressed.

36. I have never tried coffee.
And I still haven’t. Yay!

37. I want another motorbike, I miss mine.
At the time of writing this, I had sold my bike and was running around in a crappy little car. Since then, I have purchased a VFR800, and then sold it when I got too sick to ride it anymore. I then purchased a cheap little Ninja 250, as a way to run around and have some fun. I sold it a few days later, because I just wasn’t enjoying being back on such a small bike. Then my other half recently got me another VFR800, same as the old one I use to have. Sure it needs a lot of work, but I’m enjoying the project, in my spare time. A girl has to have a hobby.

39. I collect cows.
I still do, only now I have somewhere to display them. The collection grows all the time, and it’s a nice little thing to have going.

40. I don’t wear my glasses as often as I should.
Now I have to wear them all the time, and my eyesight is getting worse.

53. I get about 300 emails a day.
These days I’m lucky to get a handful.

59. I donate plasma.
Not anymore, but I wish I could. It’s thanks to the blood bank that I found out I had leukaemia, and during my treatment, I got about 40 transfusions of blood and blood products. Sure I had made 178 donations to them, so I was in front a bit, but I was still annoyed when they had to give me O negative blood, because they were out of O positive. I felt ashamed I wasn’t doing my part to donate.
At the time the blood bank sent me a letter saying thanks for everything I had done in donating, but at this point in time, they couldn’t accept my blood for the next five years. So I waited five years and went back. But it turns out that letter was wrong. I wasn’t on the “in five years” list, I was on the “never again” list. I was devastated to say the least, and even today when I see a mobile blood bank, I want to go and donate. All I can say is, I’m thankful some people still donate.

69. I have never seen a porno.
I’m not sure if “A Room In Rome” has ruined that claim.

75. I never wash my car.
I think it happens about once a year now.

78. I am known to eat flowers.
I can’t remember the last time I did this, but now I want to.

84. My favourite book is “A Fortunate Life” By Albert Facey
It still is. So much so, I now have a hard copy of it, and an electronic copy.

87. I love test cricket, hohum about one day cricket, find Twenty/20 a joke.
I still love Test Cricket, but these days when I play cricket, the Twenty/20 format is ok with me. Let’s face it, I’m getting old, and my recovery isn’t what it use to be.

92. I swam across Lake Hume and back when I was 12 years old.
This was a major achievement for me at the time. Since then, I’ve cycled from Perth to Melbourne. Given I had only just finished two and a half years of chemo at the time, I think this achievement is slightly greater.

95. I have a fear of cars with out number plates.
Like I said, some things never change. It’s not an irrational fear, it is very rational indeed.

102. I am sarcastic.
Oh really!

103. My favourite sandwich is Ham, Pineapple, Egg, Beetroot and Vegemite.
I haven’t had that combination in years. Mind you, mountain bread with vegemite, honey and a banana is great.

Oh yeah, I remember them.

Last night I remember the name of someone who had helped me years ago. It was about a decade or so ago, when I was going through a really bad time in my life, and needed some help. No one I knew could help me, or were even there to talk to about it, so I turned to the Internet.

Now these days you can google, Facebook, twitter, Wikipedia just about anything, sometimes with alarming results. But all those years ago, in the ale 1990’s and the early 2000’s the Internet was a very different place.

Not only was the Internet finding it’s feet, but so were the people who were using it. Many people were putting every single detail of their life out there, as if to say, “I now have access for the whole world to hear my voice, and hear it they will”. I was thankful for their decision to do this, and I made friends with a few of them.

One of those people is the name I remembered last night, so I googled them. The results showed millions of people with that name, but not the one I was looking for. So a bit more searching, with more refinements, and eventually I found them. Well not really, it was a page archived from 2003, and the only thing more recent was from 2006, where someone else asked what happened to them.

But this wasn’t a one off. After searching for this person, a few other names from back then started to show up, and it was the same case with all of them. At some point or another, they had all gone off the net, or had decided to go private with their details.

This got me thinking today. We are basically now moving into a new generation of Internet users. People who were never there during these early days of the net, who never experienced Netscape, GeoCities, etc. Yahoo Groups is quickly fading, and MySpace has been and gone like the uncle you only see at Christmas time.

For me, those times were the Internet being a kid, exploring the world, just before puberty happened. Now, it’s definitely self aware, more mindful of itself, and is thinking about it’s future. People today still post a lot of stuff on the Internet, but they seem to not be as open publicly. I know that’s the case with myself. My old blog use to have photos of me on there, and I was very open about my life. These days, I rather not let the world know the real me, so instead present a sanitised, more joyous, persona of myself. In a way the Internet is not so much a personal diary that I like to share, but more like a job where I have to be mindful of the content I write, or I get fired.

So on the off chance any of those people who helped me so long ago are still around, thank you for being there, and doing what you did, when you did it. I guess I lucked out being in the right place at the right time, when things were better, back in the good old days.

Australia, you got dacked!

Australia is an awesome country. As an australian, I know this, because Australians keep telling me about how awesome and great this country is. Australia is the best country on the earth, and to not think so is unAustralian, even if you’re not an Australian.

Well Australia, this week, we got shown up by our cousins across the ditch. You know, New Zealand. Remember them?

I wasn’t sure where to start this blog post, then I remembered, ANZAC day is coming up. A day to remember Australians and New Zealanders, who have fought for the freedoms we hold so dear. You see Australia and New Zealand are Rey much alike, or at least we were.

While Australia has been going around beating it’s chest about how great a country it is, and how much we punch above our weight on the world stage, New Zealand has just been quietly getting on with the job of actually achieving.

In Australia, we pump our fist in the air, because in 2008, Kevin Rudd said sorry to the Indigenous people of the nation. It was a worthy thing, and a step in the right direction, but little more.

In New Zealand, they signed the Treaty of Waitangi in 1840, and got on with it from there. Today, students learn about the history of their country, both traditional, and since colonisation.

It’s just one example I’ve given there, because it’s really late for me, and I need to get to bed, but when it comes to punching above our weight, Australia punches a feather more than we weigh, and New Zealand punches a pile of bricks.

Which brings me to the point in question with this blog post. This week New Zealand defined marriage as a thing of beauty. It’s between two people. Plain and simple, of you love someone, and want to spend the rest of your life with them, go for it.

They debated it, they looked at all the pros and cons, and finally worked out, that it’s a matter of treating everyone equally, and to not do that, is wrong. People from both all sides of politics had their say, and as is the case everywhere this debate happens, those who it won’t affect we’re the most ardent against it. But at the end of the day, the vote was passed, not for political gain, but to correct a wrong. A wrong that treated people as different. As second class. As not worthy of being part of the society in which they live, all because they love someone.

I think back to what I was taught about Australia when I was growing up. That this country is a land of opportunity. Where if someone was willing to give it a go, they could do so, and would be treated fairly and equally. When did we drop the ball Australia? Instead of being a proud nation that other countries looked up to, we are becoming the laughing stock of the world. If we want to be the lucky country again, we need to look to the east, to a group of islands, and see how it is done.

New Zealand, I thank you. You lead the way in being the moral compass under the Southern Cross, and we could well do with following from your lead.

It Gets Better (asterisk)

“It gets better”, is a well known phrase, particularly around youth depression and suicide prevention. For many people it does get better, for some of us, it doesn’t. That’s why the title of this blog post is what it is. The asterisk is simple. It means “Terms and Conditions Apply”. In other words, what looks good on the surface, has greater repercussions than you might think.

Now I’m not here to attack anyone, or any organisation that uses the phrase “It Gets Better”. Nor am I saying woe is me, because it doesn’t work on me. All I’m saying is that using the phrase doesn’t actually make things better.

I’ve thought about this post for a long time now, what to write, if I should write it, if I should write anything. Right now I’m severely depressed, and for me, that’s some of the clearest time for me to think. When people see me in my “happy/normal” cycle, I feel the most delusional.

Come with me on a journey, while I think outside of the box a little here, to try and explain why things don’t get better. To do so, think of yourself as a lemon.

As a lemon, you’re asked to give a bit of juice, because it will make someone’s fish and chips a bit tastier. You get told that by giving up a little bit, in the long run you win. But people keep squeezing you, for more and more juice, all the time saying it will get better. For them it does, they have nice tasty fish and chips. But for you, you’re just being squeezed more and more. Finally whey of have nothing left to give, you’re told “See how happy you have made people? See it does get better.” But the very people saying that are ignoring the fact you are nothing by a total mess, from which you will never recover.

At the moment, I feel like this. It’s not just a moment that has lasted for a day or two, it’s a moment that has lasted for thirty years. Sure there are times when it appears things are getting better, but that is really just the calm before the storm. It doesn’t get better. Other people may look at the surface, see the things they like, and tell me how great things are, but it’s not. Every day is a struggle, because from the moment I wake up each day, all I am thinking is “Oh great, I woke up. That means another day of having move squeezed out of me.”

I was raised on the belief that if you work hard, you’ll get rewarded. It’s horse shit. The harder I work, the reward I get is to have to work harder, to reach the expectations of others. When I rebel because I simply have no more to give, I’m punished for not trying hard enough. Sound defeatist? Yeah, it may sound that way, but it’s not. It’s actually a little known thing called “reality”.

Most people are blinded to reality. They have their support structures around them. They have their like minded people around them, and so they are blinded to the fact that while something works for them, it doesn’t work for everyone. Why does it work for them? Well that’s simple. It’s because there are people like me who make things happen, yet get no reward for the effort. Instead our reward is the expectation (implied or not) that things just have to get done.

Now I’m not expecting to be given everything in life, and have my cake too. All I ask is that I not go backwards. For the amount of effort I put in, I get that much reward at the end of it. It would be a much nicer thing than existence being futile. To break even. To know that what I have achieved is mine. If that was to happen, then it would get better.

So next time you tell someone “It Gets Better”, remember one thing. It may get better for you, because you have told them that, but the reality is very different indeed for the person you say it to.

Cricket Training

I’m a cricket tragic. I seriously would spend everyday of my life playing it if I could. Sure I lack ability these days, if I had any, but I still love it.

In my junior days, my coach had these four rules. I remembered them after training tonight, so why not share them. It’s also an excuse to actually post something to this blog after such a long time. I’ve bed busy with work, but things will settle down soon.

1. We train for two hours, and games are twice as long as that. If we don’t concentrate at training we will never do it on the field. When waiting to bowl, don’t stand around talking about things, work on getting the batsman out. If you want to talk about what you did during the week, do it after training. When padding up to bat, do it quickly, as you may only have three minutes to do it in a game.

2. When batting, you will face about 30 balls. Your first priority is to always protect your wicket, and not go out. Work on getting behind the ball, and get to know what style of bowling the bowlers have. When you start to consistently put bat on ball, then look to play your shots, along the ground. If you don’t go out, then in the last half dozen, have a real swing.

3. When bowling, you will bowl about 6 balls to each batsman. Think of it as an over, and make the batsman play every ball. When you bowl badly, you are wasting everyone’s time. Work out how to get that batsman out during that over. Always make sure you know where you are in the bowling order, so the batsman isn’t waiting while the bowlers sort out who is bowling next. Always aim for the wickets and not the batsman. If you injure one of our players at training, they will not be there to play on the weekend.

4. When fielding, treat every ball like it is a match. Get the throws into the wicket keeper. Talk and encourage the other fielders. Back each other up, and back up the throws at each end. Train the way you play. There are only ten good balls in a game and they are the ones where you get wickets. The next ball could be one of those balls, so always be ready.

Where We’re Goin’ We Don’t Need Roads

So I’m I’m a town that I didn’t plan to be in, for a reason that I wish I had avoided, waiting for things to happen, so I can at least get to where I am going. Welcome to Whyalla.

It all was going along nicely when I drove off this morning, but five minutes down the road, and a kangaroo decided it wanted to be grilled, but instead of choosing a barbecue, it chose the front of my car. Thankfully not too much damage, but enough for a panel beater to make a lot of money, and my insurance company to shake their finger at me.

After checking for damage, I could see most of it was minor stuff, so I got out the roll of 100 miles an hour tape, patched things up and got going. My only concern was the couple of drops, and by that I mean two or three, of coolant I could see. I looked around for a hole, but couldn’t obviously see anything, and I even went as far as to check with a torch, even though it was bright and sunny. My guess was it had come out of the overflow, caused by the big bang, theory as it was.

With the kangaroo checked for deadness, and to see if it had a Joey in it’s pouch, or even better a golden ticket, off I drove…, for a short time.

Before you panic though, this is my standard practice whenever anything out of the ordinary happens. It’s my way of making sure I did check everything correctly, and there are no issues, that I may have missed while the adrenaline was going through my system. It was at this point I could see more coolant. Yep, I had a leak in the radiator, but from where? Well after more searching, I found a small error in the top of the radiator. Not an all hell is breaking loose situation, but enough to be a concern.

I kept checking and checking but couldn’t see any more issues arising the car was running fine, there was no heat in the radiator, so I decided to limp through the next 200km to Port Augusta to see about getting a fix.

While on the way to Port Augusta, I had Mrs. Green Cow check online for where to get things fixed, and it turned out that Port Augusta lacks the very places I was looking for. So onward to Whyalla I went.

Now Whyalla is one of those towns that has sort of always been on my “to do” list. I don’t know why, it is just one of those places, so in a way this was a good excuse to go there. It wasn’t until I found out that a new radiator was required, and that I was lucky to get as far as I did, because the seam on the top was splitting apart, that I realised I would be here for the night. That’s because parts need to come in overnight, for either the radiator place, or for the dealership of the type of car I drive, that also happens to be in town. Grrrr.

So what about Whyalla? Well for the parts I have seen, I would have to say, nice place. It’s a quite place, friendly locals, very clean, a good little town. I like the street art about the history of the place. All the buses seem to go to a place called “Route”, but in different ways, depending on the number they have listed, and apart from the two pigeons that are trying to do a live version of the film Eyes Wide Shut outside my window, I’m enjoying the relaxing day off.

But tomorrow it’s back on the road, and hopefully no more animals crossing, and on to the new life in Perth. Goodbye Whyalla, I’m glad to have been in you.

The Fairies At The Bottom Of The Garden…

…, made me the critical thinker I am today.

So what is a critical thinker? Well you might know them as skeptics, but the name skeptic has been bastardised in so many ways these days, it takes less explanation to say I’m a critical thinker. But how did the fairies at the bottom of the garden make me this way, well that’s the topic of this post.

Like most young children, I dreamed of things, I wished for things, I rubbed the kettle hoping a genie would pop out, I did all those things. Sometimes my wish would come true, other times, nothing. Instead of getting frustrated or angry when it didn’t work out, I wondered why. My belief in make believe made me think. What was the cause? Why did this happen? How did this outcome come about? Let’s have a look at an example.

One of the things I wished for was to be the best hockey player ever. Now we can all tell that didn’t happen, but I can look at the situation and work out why it didn’t happen. I needed to be bigger, stronger, faster, (some would say better looking, I tend to agree, but let’s not go there), I needed experience and talent. Now I could have achieved all those things maybe, but I wanted it now. For it to have happened in an instant, there would have been a need for things to change at a molecular level. Changes to my DNA. Changes that were not humanly possible then, nor now. But it got me thinking, is there a way to make these changes happen?

My imagination lead me to understand differences between fact and fiction. It made me think about what was possible, what was plausible, and what just didn’t add up as even being logical. If I hadn’t jumped off the top of the slide dressed as Superman when I was three, I wouldn’t have known that putting on a red plastic cape out of a Show-bag doesn’t give you the ability to fly. Maybe I should have worn the yellow belt too. Of course as an adult, it is easy to look back and see just how silly this idea was, but for my small, now bruised and bloodied, brain, it was a journey of discovery.

These days I don’t consider myself a good critical thinker. I don’t understand all the rational behind debunking all the woo woo that is out there, but I can use my understanding that as a baseline, nothing is happening to then build from there to not be mislead. I don’t have all the answers, and it’s impossible for anyone to have all the answers for every possibility out there, but I know I’m not easily mislead.

If it wasn’t for those fairies at the bottom of the garden, I might be one of these people who believes things as an adult, because someone tells me it. But instead, I’m someone who is rational in my thinking and not easily amazed by rats with gold teeth selling snake oil.

So I say thank you to the fairies at the bottom of the garden, for making me who I am today, instead of just granting my wishes. Besides, I now know that even if you had given me that invisibility cloak I wanted, the shopping I planned to do with it was actually shoplifting. Thanks for getting me out of that one.

We’re The Fresh Food Value For You

Rant time here today.

As much as I’m an anti-smoker, they are not the direct result of my rant here, but they can in general get stuffed. No what I am complaining about is supermarkets and their bullshit double standards.

Go there to get some fresh healthy fruit, and you have to line up for three days, jump over the turtles, bang your head on some bricks, nearly save the princess before she is dragged away by a dragon, before you get to use a self serve check out, or be told that this aisle is closing, and have to line up to do it all again.

But be a smelly drug user, and you get served right away at your own special counter, and screw anyone else who has been lining up since Moses played full back for Jerusalem.

And it all comes down to money, plain and simple.

The supermarkets know that the drug users won’t line up for their hit, no, they have to get it right there, right now, at any price, so give them what they want.

This last weekend, I lined up at the supermarket, stepped up, and the checkout chick said hello, grabbed my first item, then put it down, said she would be a second, and served three smokers who wandered up after she had already begun to serve me. Go and stick that up your deli section you bastards, that’s poor form.

As far as I am concerned, treat everyone equally. Make the junkies line up like everyone else, make them go through the pain of having to deal with the poor excuse for retail, like everyone else. I’ve had enough of this crap, it’s just not on anymore. So from now on, when this happens, I’m just going to leave my shopping all over the check out, and they can sort it out. Smokers complain out their rights, well you bastards have the right to line up like the rest of us.

7shwim163,/-$d

So what does the title of this post mean? I’d like to know myself, because even though I wrote it, I has no idea what it says. Welcome to my world of dyslexia.

Why do I blog? Well my dyslexia plays a big part in that, because blogging helps me to practice to get words correct, to get sentence structure correct, and it helps me to find a bot of order in the minefield that is a problem for me.

It’s not a big problem, I function fairly well, and at times the mistakes I make are comical in hindsight, but it does take a lot out of me.

So what is dyslexia? Well you can google that one, but for me, the way the words appear to be, isn’t always the case, and at times the information my brain is putting out, doesn’t always match what ends up on the page.

Now this isn’t that much of an issue for me, I can read back over what I have written, and as long as it wasn’t too long again, I can usually work out what I was trying to say, and correct it. But over the years I’ve been called dumb, and stupid, and slow and all those kind of things, simply because things didn’t match in a way others see them.

Let me guess, you want an example. Well that’s really difficult for me to do, because thanks to autocorrect, and misspelt words being underlined, I pick things up rather quickly in most cases. But there are things like mixing up February and November. Yes I know the two are very different months, but I still mix and match as it suits my brain. When I write something ending in “ing” I usually write “ign” and I do the same when writing by hand. So when I write sing, it becomes sign. I also mix up the order of the “u” and the “t” in a lot of words.

When reading, I can skip whole words, paragraphs, or even half words, and then reconstruct what did stick, into an entirely different meaning. This can cause issues when I later try to link things together. It doesn’t mean I can’t learn, it just means that at times, it takes a bit for the real links to appear to me, and then it all makes sense.

Probably the biggest issue for me is phone numbers. If someone tries to give me a number quickly, I blank out after the first few numbers. If I am writing it down, there is usually a mix of letters, numbers, and squiggly lines, which makes no sense at all.

All this adds up to people thinking I have zoned out at times, when really, I’m just trying to make sense of everything in my head, and I need to focus on that. Dyslexia doesn’t mean I am dumb, it just means I see things a bit differently, and that’s not always a bad thing.