Where have I been? Where to from here?

25 September 2013 will probably end up being a memorable date in my medical history. It will almost certainly mark the date of my final dose of Avastin. It was exactly three years ago that treatment with the drug began.

   On 3 December 2009 I got the first warning that I had a brain tumour. We had it confirmed on 19 December and I was operated on almost immediately to have as much as possible of the GBM[4] removed.

   From January to early March 2010, I had oral chemotherapy and radiotherapy in Melbourne to attack the visible remainder and inhibit the spread of the tumour’s tentacles through the neural network.

   When I returned to Armidale I began a course of intravenous chemotherapy but it became clear by mid-2010 that I would die within months.

   So far, this fits the standard pattern of life expectancy for a GBM patient of any age. About ten months after diagnosis, on or after conventional treatment, you die.

   I firmly believe that we followed best practice up to that point. Given that you're told after diagnosis you have three months to live if you do nothing, there's no time for experimenting with non-invasive treatments.

   Steve Jobs of Apple fame experimented with such treatments and admitted shortly before his death from pancreatic cancer that he had mucked around too long with useless remedies, and that delay was going to hasten his death. He should, he said, have gone straight for conventional treatments and he believed that if he had, he would have lived longer.

   I think so too, but it's only my opinion and yours may differ. That's fine, but just make sure it’s based on informed sources. There's plenty of rubbish floating about on the net and if you take it at face value it can look convincing enough.

   Everything changed for me when I began taking Avastin intravenously in September 2010. It was like a cripple being cured. Well, almost. Let's not get too carried away. I knew it was just a stay of execution, so to speak, and with luck I might get 6-9 months tolerable life out of the expensive brew.

   With care, scrupulous hygiene, avoidance of infection by unnecessary contact, with love and good management, I got an amazing three further years of life from an infusion of Avastin every three weeks.

   During that time, the slow but inexorable slide to poorer and poorer physical health occurred, as the tumour regained its strength – in recent months at an exponential rate. 

   Mentally, the slide has been slower, but I know and Tracey knows the falloff in mental performance is there, masked on this blog by taking hours to compose and type a few paragraphs, by spell-checkers and strategic use of search engines.

   Avastin was never designed to treat a patient for three+ years. A year, maybe eighteen months – stretching it. And yet I went on, every three weeks, conscious that the proteinuria count was showing decreasing capacity of my kidneys, and maybe other organs, to cope with Avastin’s side-effects.

   The nature of the dreaded seizures also changed. It was as if the neural paths in the brain for instructions to the right arm and leg had all but burned out. Just a few more neurons to shatter on the right side – the gripping capacity of the opposable thumb, the proper working of muscles for the throat, the eye and the mouth. It's still working on those neural pathways, but occupation is almost complete.

   That's the pathway to this point. It's not a crossroads. There are no other options as far as I'm concerned. But let’s be clear – it's not an end point either. Not yet. 25 September was a month ago and my rate of decline is still constant, but I continue to have cognition, a hand to type with, and a computer to store the data. And I'm still me. Well, I hope so. I believe so. You can tell me if or when I start acting like someone else.

   It happens. If a node of this tumour appears in the ‘personality’ area of the brain, I may well become someone else. Someone you wouldn't want to know.

   But not so far, I hope. Losing my identity is one of the few fears for the future that I have – fears which have appeared in my consciousness at least. Others will surface, no doubt. I don't pretend to be bloody Superman.

My trusty "electric chair"

   I've had nearly four years to arrive here and to think about this. Not all with a terminal condition have that luxury, if I can call it that. Avastin doesn't work for everyone with a GBM brain tumour. It worked for me but now it can do no more.

   I accept that.

   If you imagine that I'm going to take to my bed and just wait till the brain tumour takes over, forget it. I'm not. But if you think I'm going to go for one or more invasive treatments, I'm not doing that either.

   My body has had a lifetime dose of rays of varying wavelength through radiotherapy and x-rays. That's out.

   Further chemotherapy we know to be ineffective.

   Surgery might do some temporary good - or may make my condition far worse. Whatever life of fair quality remaining could be lost.

   I'm not up for the hassle. I don't do odds-on betting. I’ll take my chances with what I have left. We have some measure of that and it's one of the few things over which I have control. The decision, I mean.

   Seizures quietly continue their destructive path, each time taking a bit more. If I close my left eye and view my world through the right, it is a very blurred interpretation of what I know to be there. If I had to rely on it alone, it would be maddening. And it will get worse. The left is still good, when I'm alert. Sometimes I touch the right corner of my mouth and find the skin around it slightly moist. A few more seizures in that area and I may be drooling.

   There are many wild cards in the deck. Heart failure and stroke I place at the top. There's no way to predict those and if there were, so what? Better to leave that in the lap of the gods. That's my preference.

   I’ll fight to be able to sit on a toilet or, as I have found necessary, a commode. Stomach problems increase while mobility declines. This is a very bad combination. I loathe the commode, but have you considered the alternatives?  

   I will fight to shuffle along using this steel frame. Tremors of the right arm and leg, sometimes violent, are proving to be my worst enemy, physically. I didn't expect that. I’ll accept the wheelchair, but only because it reduces risk. But I will move these arms and legs, the right-side ones pitifully if that's how it's to be – and it often is – rather than have my world limited to a bed.

   I’ll accept limitations that must be borne, but work with what I have, and what the world is willing to offer me. I know only too well on whose shoulders my future rests.

Photo: Tracey James

home | WHAT'S NEW! | stories from my past
.