The WHAT'S NEW! page contains the latest medical updates. If you're wondering how I'm going as far as health is concerned, this is the place to start. Latest: Wed 27 Nov 2013. 7.20AM

Friday, November 1, 2013

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


  1. I don't know why, or if there is a "why", your brain and your left hand have been spared what has afflicted the rest of your body. But whatever the reason or the coincidence, it has enabled you to provide a profound gift to the world, in that you can clearly, rationally, and compassionately document your situation for the benefit of others. No doubt the benefit extends to yourself, as well, in giving you a raison d'etre denied to most other people in your position.

    I'm sorry to learn that the Avastin has probably come to an end. You are still here and that is a miracle. By "miracle" I don't mean something supernatural, as there is no such "super" to "natural". Either something is natural or it doesn't exist. I mean you, with the support of Tracey, Christian and the medical profession, have defied the odds and I suspect you will continue to do this for some time.

    All my love to you, Tracey, and Christian at this increasingly complex and difficult time. Joan

  2. I just realised that what I said sounded a bit like a sympathy greeting card. What I really meant, but was too constrained to say, was: All my love to you, Tracey, and Christian in this gut wrenching, tearful, heart rending, impossible time. I'm not saying goodbye yet, though. You're tough as old boots and will be here for a while yet.

  3. The person who clicked 'entertaining' as their reaction to this needs a brain transplant.

    1. Or it may have been a simple mistake (I made one about 35 years ago, I recall) or possibly even one of your many South American followers, suffering under the misapprehension that 'entertaining' translates to something like 'moving' or 'worthy'?

      Anyway, I like to think so. kvd

  4. Denis, I hope you don't mind but I've attempted to publicise your blog by linking to it in a comment on an SMH article by Dr Teo today, which is about the upcoming Walk4Life.

    I just think you are both amazing men, both blessed with formidable support, and anything which helps reduce the mystery and fear of this dreadful disease deserves the widest possible reading.


  5. Full marks Denis (and Tracey) for your tenacity and positive spirit. Joan is right in that you have given the world a gift. Thankyou for sharing it all with us.

  6. I hope a lot of people find this blog and read it - and then go out and appreciate each day!

  7. i had one of those conversations with my mother today, Denis, where i told her the last year i had with my brother was a blessing. knowing his days were numbered, i made more effort and spent more time with him that year than i had in the previous 5 years. a precious, precious year, Denis … who knew dying could be as great gift as living? much love to you, to Tracey and your family. xt

  8. take care denis and family hugs & xxxxxx

  9. You're still you - and what a person you are. Almost worthy of your wife, which means you are practically unique amongst men

  10. I only know you from your blog and twitter, Denis, but Joan's comment says it all. This blog and your always generous presence online have touched many and we are truly grateful.

  11. If one can have gratitude towards an illness, I am grateful to your tumour, Den,that it has left (so far, at least) your personality and cognition intact.

    A few years ago, Dave's slow but inevitable decline because of MS began to throw up more profoundly difficult below-the-waist issues. His Neurologist, John King, ordered a new brain MRI. He saw there were no new demyelinating brain lesions, even though there was continuing atrophy of the spinal chord. We were jubilant.
    John said: "Many people with MS can walk and can use their bowel and bladder quite normally. But they have lost their ability to think. If I had to choose, I know which one would be my choice." Of course. A "no-brainer" as they say in the industry!

    John's remark will always stay with me and helps me through many dark moments. Like now, when I've been woken out of a deep sleep to work physically hard at 2 a.m. to urgently lift and push and pull down and roll and pull-up and tug and heave get Dave successfully...this the toilet...

    It's now 3 a.m. I am, it goes without saying, wide awake. Playing here in your blog, Den. Dave is snoring contentedly and comfortably beside me. His bowels and legs and other bits in that region are no longer working as we'd like.

    But, my oh my! What a prodigous brain and sparkling personality continues to delight us all.

  12. Without a doubt you are still you! And it's beyond imagination you type and tweet so often whilst meeting these challenges. It's a rare gift to share with such honesty, humour and style an experience that frighten many. The insights have been invaluable as my closest friend has experienced some of the same things you have told us about. You help take away fear for others when faced with the diagnosis.

  13. I met the Brain Tumour Alliance Australia team last week. They were so beautiful, so caring, so alive. I don't know if readers of your blog know of them so thought perhaps to share their phone nu,net and website for any of your readers who don't know the. The only national Australian organisation for the brain tumour patient, family and caregiver. Freecall number: 1800 857 221

  14. I won’t try to comment individually on all these wonderful responses, but I thank you all deeply for making these comments, which I hope people will read because to me they are an integral part of the posting. I’ll accept with grace though don't always agree with the compliments which are far too generous. Apart from that you can generally take the view that silence signifies agreement.

    But just a couple of things – I'd also like to think KVD was right on the ‘entertaining’ comment but that if someone was genuinely entertained, then worse things could happen!

    I'd adjust Karen’s slightly so it read “a man supported by a brave, brave woman.”

    zmkc will have made a friend for life with Tracey for her comment! As the comment about me was far too generous I forgive you for being right about … the other bit, Zoë.

    On Ros’s I would also echo my sentiments in adjusting Karen’s, and I know Dave would agree fully – there's another brave, brave woman, and I feel that about the thousands of care-givers who act not only out of duty but out of love. I don't know how I could bear it if I thought what Tracey does for me is purely out of duty, but I take comfort from knowing that can't be so because of the additional scores of things she does that someone acting solely out of duty would not do.

    I'd urge anyone dealing with any aspect of brain tumour treatment and/or care to note carefully Virginia's advice.

  15. Like so many others I say thank you for your insights and your wonderful capacity to so often change the way we, your readers, think. Very good wishes to you and Tracey. My thoughts are with you both. Anne P.

  16. I'm finding with the onset of dysphasia and head seizures that my concentration has fallen to near zero. At the moment at least I’ll suspend one of my most enjoyable occupations - of responding to comments - in the hope of finding a time when I’ll get some back. Please be assured that I've read every one and thank you deeply for them.


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