Brain cancer Feb 19

But wait - there's more.

I have a problem called aphaisa. Actually, I have 3:

• Aphasia - difficulty with aspects of communication (eg. Naming things, reading, writing)
• Apraxia - difficulty initiating and coordinating movements
• Dysarthria - affects speaking by a weakness in the muscles of the mouth/face/tongue (eg. Slurred speech)

So this doesn't effect intelligence, solving problems, or making decisions.  But it makes getting heard very difficult (which is why I never answer the phone or send texts). I also write everything with my left hand (including this) so I have a long way to go before I get better. I also have team of physiotherapists, occupational therapists, speech pathologists, and radio surgeons supporting me.  What makes me happiest, though, is the love and encouragement coming from my 3 girls: Jacqui, Juliette, and Isabel. (I couldn't have survived without them.)

Discharge

I have just learned that I am being kicked this Friday. This is great news but I'm mindfull of the strain this will place on Jacqui as my therapys have not yet finished. So don't ring me up just yet.

Brain cancer - Jan 2

Its 7am and the nurses have finished prepping me... Now its just the bloody waiting again as emergency surgery cannot be scheduled with confidence. To kill time, I'm going to tell you about stuff I'm researching. Caveat: I am not a doctor so I'm sure there are errors or gaps in my knowledge but its close enough, and its still interesting.

Brain cancer damage and recovery

As you know, theres not much spare space under the skull. Theres brain, small organs like eyes and hypothalamus, the top of the spine, and CSF filling anything left. When cancer (no matter what type) gets growing up there, as it gets bigger, theres nowhere for anything to go (including the tumor) - things get squished and pressure slowly builds under the skull. The pressure starts affecting the brains ability to perform, and the symptoms you detect will be dependent on where the tumor takes root. Mine is near speech control and motor functions (as noted in the blog prologue). My speech is most noticeable of all the symptoms and continues to get worse. I don't take calls from anyone but family anymore because its just too confusing - my thoughts are still clear (hopefully this blog is proof of that) but the words struggle to get out.

Over time, if the tumor is not quickly treated, the cancer will start killing adjoining brain cells. Thats not so good, and thats why, even though I'm still feeling fine and am in no pain, this is treated so seriously. How wonderful is it that our health system takes such care?

If the damage to the brain is pressure-related, once the tumor is removed, the cells should recover on their own within days or weeks. If cells are killed, there can be permanent damage - although there appears to be plenty of evidence that over the subsequent 2 - 3 years, and depending on conditions, the brain can regrow and some function returns.

The surgeons seem to think my symptoms will be temporary rather than permanent (but there's obviously no guarantees). There's also the issue of damage caused by the excision procedure itself - which seems to carry the greater danger.

I'm going in now - wish me luck.

Brain cancer - Happy new year indeed

The view from the hospital for the city fireworks was pretty great. The display is so big, you never get to appreciate the full thing until you see it from a balcony on the 8th floor of POWH. A bourbon and a cigar would have really completed the scene.

Various medical staff kept visiting in the morning to prep me for surgery. Lots of needles sucking stuff out of me or pushing stuff into me. I'm not good with needles so that was pretty rough. Breakfast was innocently but tantalizingly left by my bed... And even though it barely rates as food, it counts in the 'nil by mouth' regimen. Soon enough I was attached to a drip, arms covered in bruises, awaiting my fate.

Time dragged on. I haven't mentioned Jacqui much but of course she's here most of the time. We have walks through the halls, discussing the pros and cons of the treatment, and keeping me updated on the kids massive social life. (We are so grateful to the families that are minding our girls for so many hours - the girls are having such a great time, I'm not sure they know I'm sick!) I was getting sleepy just before lunchtime so Jac went for a walk. The next thing i knew, a nurse woke me at 2pm to tell me surgery was cancelled.

The nurses kindly (or is that sadistically) left me a couple of egg sandwiches. Jacqui took a more sympathetic approach and went out for coffee, chips, and sushi. I spent the next 2hrs filling up as I realised I'll be starved again from midnight tonight.

The prospect of doing the whole thing again tomorrow doesn't appeal but I am really grateful I didn't have to wait until 8pm to find out the day was a waste. Jacqui, where's the bourbon?

Brain cancer - NYE

It was a long day of waiting, various registrars coming in to chat. Finally a real doctor came - in fact, I got two. Dr Jacob Fairhall does plain, old-fashioned brain surgery, Dr Colin Chan does Stereotactic Radiosurgery (look it up).  

The plan is for Dr Fairhall to perform 2 excisions (one for each lump) during the same operation ... And that may be as soon as tomorrow (Jan 1) or the next day depending on if an OR will be free. An excision is basically a procedure where he makes a cut in the skull (2 places actually), shoves a needle through the brain matter down into the lump, and sucks out the great bulk of the lump. Sorry for the grossness. Of course I'm way over-simplifying the technique but I think that is enough detail. Such a technique cannot remove all tumor cells (which is what must happen) - so thats where Dr Chan comes in the following week.

Dr Chan uses radioactive lasers (again, over-simplifying) to kill what cancer is left at the cellular level. The machine basically takes a 3D model of the tumor, then aims the lasers at the tumor using the computer model as a guide. Amazingly, its done as a day procedure and I will be awake during the whole thing. If everything goes well, we may still be able to go on our holiday to Port Macquarie on Jan 12 (no, really!).

But things can go wrong. The excisions carry some risks: temporary brain damage; infection; it even has a small mortality rate. The Radiosurgery can do the whole job quickly and cleanly but: 

• without a prior biopsy (something the excision will also provide), they might find that the lumps are different cancers from what they are expecting (since the pictures are inconclusive) and the procedure may be a waste;
• while the cancer can be fully killed, if would remain as inert lumps in my head for the remainder of my life - thats OK if you don't have a choice, but I want those bastards right out!

The approach is pretty standard for thyroid cancer - cut out what you can and irradiate what's left. Its what happened 3 years ago. But if it turns out not to be thyroid cancer, things could get even more messy.

So, as you can see, its not cut and dried. But I've had almost two weeks to research options and weigh up risks vs benefits. So when the docs came to talk to me, it didn't take me as long to decide as I thought it might. I'm taking on an acceptable degree of risk to maximize the cure and minimize the chance of the cancer coming back later on. My previous job in IT risk has probably helped me come to terms with the grey areas quicker. Alas, there is no ideal scenario here.

What's more, everything will be paid for in the public hospital. Other than free TV and better food, the private hospitals cannot generally compete when it comes to serious and/or urgent treatment. I started this in the public system assuming I would eventually have to change over. But the doctors couldn't justify a change. Hooray for our wonderful public health system!

On a lighter note, I've had a great view of the Sydney Harbour fireworks and the Coogee fireworks.

Brain cancer - Prologue

For those of you that didn't know, I contracted Thyroid Cancer about 3 years ago. I am lucky that I have a wonderful GP week who picked it up pretty quickly, and he referred me to an excellent throat surgeon who fixed me up quickly. For 3 years, all tests have been clear and I was well on my way to earning the title 'Cancer Survivor'.

At the start of November 2012 I started noticing subtle behaviour changes. Nothing I couldn't handle but they got slowly worse as the weeks went by: slurred speech; bumping into walls; messy handwriting; poor typing. A speech pathologist friend suggested I see my doctor in case I was heading for a stroke.

My GP arranged for an MRI, the technician took one look at the image and said I needed to see my GP straight away (gulp!). By the time I got back to my GP, he and the neck surgeon had arranged to send me to St Vincents emergency dept the next day. I had 2 (yes, 2!) tumors deep in my brain - that fucking cancer had moved (it happens apparently). Who knows how long I had before a brain explosion became imminent?

You can't imagine how rough that night was. You have to get through all 8 stages of grief in about 12 hours. How do I tell my family and 2 young girls. I was scrambling to sort out a will, leave details of login/passwords for Jacqui, sort out finances as much as possible, tying up as many loose ends as I could. I didn't know when I'd be coming home again... Or whether I'd be coming home at all! But you hope for the best and plan for the worst.

I got myself admitted the next day (Dec 19) and it all started. St Vincents was great. 15min after I walked through the door I had an ER bed and in 4hrs a ward bed (the letter my GP gave me helped, I think). An MRI and a CT scan was done over the next couple of days and I was sent home for Christmas. Phew, I'm not ikely to get into trouble in the next week or 2 but they said I needed to come back on the 27th for a brain biopsy (yuck).

Just so you know, avoid hospitals during the Christmas - NY period. Medical staff like to take holidays as well as you and me, and the hospitals get inundated with drunken fools. The 27th, 28th, and  29th came and went as hospital resources were taken by more urgent cases. I called the Oncall Neurosurgeon who advised to get myself admitted to Prince of Wales Hospital (POWH) instead. That suits me because POWH is closer to home and the kind of treatment I need (ie. brain cancer surgery) was best available there anyway.

So here I am, sitting in a bed, waiting for a doctor to come along and tell me something. Its pretty frustrating that I'm in an information vacuum but its holiday season and everyone is away. I'm taking it as a good sign I'm not in any immediate danger. I've been as proactive as I can be and know I'm in the right hospital with the right resources. But I have questions and I want to take control. I'm already a victim of this fucking cancer, I don't want to be a victim of the system as well.

I thought it would be interesting to be blogging this journey - after all, you don't get brain cancer every day - and hopefully people will get something out of the experience. I'm learning stuff about the hospital system all the time, as well of course the cancer, so its worth documenting.

Sydneys second airport

I am amazed we are still having this discussion. Progress was slow but evident during the Hawke and Keating prime ministerships.  Its desperately disappointing that Howard was more interested in bribing voters with a fistful of cash than making the necessary decisions on this issue.  But this political opportunism is why we are where we are now.  So we need to stop fussing and just build it.  Its a 3 step process ...

Step 1

Badgery's Creek was the original and still the best option.  Just build the fucking thing! Its best because it is :

• closest to where travellers want to go, the CBD (lets not fool ourselves, who of us avoids flights to AVV, preferring instead to go to MEL at less preferable times?);

• cheapest to build;

• likely to have no greater political fallout than anywhere else.

Frankly, I don't give a stuff for the people who live near Badgery's Creek.  If you are stupid enough to live near a planned airport, then you get what you deserve.  If you are selfish enough to think that Western Sydney is already under too much pressure, then you need to go live in the eastern suburbs for a while.  (The western suburbs is like a ghost town and has plenty of pressure to bear.)  And if you are too bloody-minded to do your bit for the benefit of the city, then fuck you - go live somewhere else.

Step 2

Once BC is built, the next step will be to balance the load by diverting all international traffic to Badgery's Creek and keeping all domestic and freight travel at Mascot.  This will prevent international passengers being given a choice of where to fly (thus avoiding the AVV / MEL conflict) as well as making it more difficult for the scumbags that run Sydney (Mascot) Airport from gouging travellers.

Step 3

Finally, we need to fix the mess that is the private ownership of Sydney (Mascot) Airport -- you can thank John Howard for that screw-up as well.  Mascot needs to be returned to government ownership and management, to ensure all citizens benefit equally from their asset.  It goes without saying that the BC Airport should be in the custody of the government over its entire life.

Steve Jobs RIP

Steve Jobs was a marketer par excellence. No one could deny that, but let's move past the cult of St Steve and look at the reality behind the legend. He was no kind of innovator; like his mate, Bill Gates, he took existing technologies, put his own gloss on them and marketed them with unquestioned genius.

He took the concept of the walled garden and turned it into a walled Alcatraz with shiny bits to make it look attractive to the inmates. He took the US's dramatically broken patent system and used it and Apple's deep pockets to relentlessly suppress innovation by competitors.  His company profited from employing Asian sweatshops that abused and underpaid workers. He was one of the richest men in the world yet had no recorded donations to charity, and when he returned to Apple he stopped the company's philanthropic program.

Claims that he changed the way we look at music, the internet, computing are simply rubbish - there were, are, and will continue to be devices that perform all those functions as well as and, in many cases, far better, than anything made by Apple. His true and sole genius is amply demonstrated by the fact that, at his unfortunate and untimely death, the world's media and politicians have obediently trotted out the Apple advertising department's hagiography.

Sorry, but thats nothing to be proud of.  All you Apple fans buying into the hype might like to take a harder look.


(Thanks to Fred Pilcher from whom I borrowed much of this text).