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.