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, September 13, 2013

Going over to the dark side 2

[Continued from Part 1]

So what's going on behind that seemingly calm exterior is a very complicated series of manoeuvres aimed at keeping my body in some sort of precarious balance, and giving it the best chance to support the brain that's composing these words. The reason why what you're seeing is not utter rubbish so far is that the cognitive part of the brain is not yet affected, and I still have the ability to get those words down in front of you in some sort of logical form. It can't always be that way.

   Meanwhile, the tumour, and its effects, keep on extending. Essentially, the presence of the tumour has succeeded in burning out most of the major functions of the right arm and leg simply by inhibiting and scrambling the signals to and from the brain. I've been fiercely trying to protect the tiny ability of the leg to move from the hip, even though the lower joints are unreliable. That allows me to go minimal distances, but ones which are critical. To the bathroom and back, for example.

   After hundreds of seizures, the tumour had just one last destructive mission to carry out on the right hand – an attack on a little bit it had not dealt with fully.

   I had retained a slight ability to grasp something between fingers and thumb. A concerted attack over the course of several weeks a couple of months ago achieved its goal – to destroy the ability of the index finger and thumb to coordinate and grip, even slightly.

   I now have two different seizure phenomena beginning to take place, as anyone will know from reading the medical side of this blog  seizure attacks on new and unexplored territory.

   The first is the tumour's attack on the throat and larynx – the voicebox – which has resulted in a series of seizures that at times have rendered me either speechless or unintelligible, although cognition has remained. In other words, under one of those attacks, I can think the words quite clearly, but I cannot say them.

   I begin to appreciate what those who stammer go through.

   The second, and more recent, is the attack by seizures which have now affected my head, causing loss of control of facial muscles, especially those around the eyes, my mouth and ears. Sometimes my head feels as if it is in danger of bursting at the seams.

   Perhaps it is.

   I expect these to get worse before the tumour's effects move on to other parts of my body, but who can tell? Blindness and/or loss of hearing may strike next, at any time, as could loss of control over bodily functions.

   Tracey is the only one who has seen the facial seizures. Quite often I am alone in bed when a seizure hits. I try to gauge its severity, and whether or not it's worthwhile to call Tracey in. It may appear to strike only the hand, and yet I may lose my ability to speak at this time, or immediately afterwards.

   Most of these seizures take anywhere between fifteen minutes and half an hour to recover from. I'm talking about the immediate effects here; the longer term effects may only be apparent at some later stage and usually they are much more crippling.

   When you see all that can possibly happen, you might say that for the best part of four years, I've been very lucky in certain respects. The effect of a tumour on other parts of the brain could have been more devastating at a much earlier stage.

   Explaining this in words is the only way I can pass on to you a clearer picture of the physical extent and effects of this tumour at this stage. I haven't even touched on the psychological effects of the escalating breakdown of the physical body in recent months, and the effect it has on our family. 

   That would take another entire blog piece  one that would rightly centre on Tracey, and not just in her role as carer. It is a vast understatement to say that it's a story needing to be told in its own right.  

   Thus far, I can live a life with reasonable quality in many respects, but even this time is passing very rapidly. We simply don't know what the next phase will be, except that it cannot possibly be a better one, because we have nothing left to be able to make it so.

the dark side 1 | the dark side 2


  1. On your talk of pressing time, and how futures are measured according to circumstance, a while back the NSW RailCorp 'solved' the problem of always-late trains by simply amending the train schedule and - hey presto! I wish there was a similar 'quick fix' to your own schedule, but not to be.

    I think if gratitude can be expressed for any of this dreadful process, it is from me, the reader, to you the writer, for the thus far unaffected clarity of your thoughts. I guess it cannot last, but for me each day is a diamond - and I expect that I'm not alone in that selfish thought.

    1. After a bout of bad head seizures last night I begin to question the wisdom of saving the brain while the body crashes and burns. From a purely selfish point of view, I wonder if the other way round would be better. But we have little room to manoeuvre on the matter.

  2. ... and so bound up in my own thoughts I forgot to add:


  3. Yes, well, who could put it better than "Anonymous" has done. I have a piece if paper on my bedside table now, and look at it each morning as I get up. It says, simply, "Denis and Tracey". It reminds me to think of you both and to remember that whatever unpleasant things happen in my day I can never, never in a million years begin to imagine just how much worse it is for you. And...I know I shouldn't say this...I know it's not useful...I know it's illogical and pointless but still I feel like getting up on the rooftop and shouting:IT'S... NOT...BLOODY...FAIR! And it isn't, it isn't, it isn't! What useless things words are at a time like this! But words are one of the few things you have left, Denis, so may you still be able to delight and inform us with them for a while yet. You always could use them wonderfully's one of the many things your students loved about you.

    1. Thanks again for those what I know are heartfelt good wishes, Julie. I won't start another lecture on my views on unfairness but I simply cannot look at it in that way. But thank you, thank you.

  4. Denis, you are so brave. I wish you didn't have to be.

    1. That’s a beautiful thing to have said about you [or me], Zoë, but the fact is, I don't feel at all brave, and never have done. I was an absolute wimp as a child, and don’t believe I've changed much as an adult.

      I'm thinking of writing a posting about courage, basing it on something Mary-Ellen Field said when constantly being called courageous for donating a kidney. If there’s time, I'll write it.

    2. PS As you will know for certain, 'Zoë' means 'life'. Somehow I suspect you were well named.

    3. You're a brave sook? That's true bravery - being brave because you are actually fearless is something else, I think. As for Mary-Ellen, nothing will ever convey to her my wonder and gratitude for what she did for my brother. She's the closest thing to a saint that I've encountered.

    4. "...being brave because you are actually fearless is something else, I think."

      I'm with you on that. Donating a kidney, after long reflection, especially to a non-family member and with no thought of personal gain, is an extraordinary act of compassion.

  5. Your generosity is unfailing, Denis. It is your great gift to us that you share this and say it how it is. I hope in some way, doing so also helps you. It is harder for us than the upbeat stuff because there is not a thing we can do - not even peel you a grape - but perhaps just being here to read your blogs, being around, is something, and we will certainly grow stronger for doing it. It is a blessing that you still think and write so cogently, and I hope it stays that way until the time comes that you wish yourself it wasn't so. So I'll hang around as long as you can tell us what you want to say the way you want to tell it. Are you a fan of Dylan Thomas? "Rage, rage against the coming of the night ......" xox

    1. Trish: those are very generous words and I'm not sure I live up to them. Yes, I'm a fan of Dylan Thomas but I've had words mentally with him over certain things, as I made in comments elsewhere on this blog where I said:

      'It's not a case of Dylan Thomas's "Do not go gentle...." That's bravado from the young Dylan Thomas who faced an early death but lived only half a life. He simply wasn't ready for death and was full of rage [and booze].'

      There's a time for not going gentle, but yes, it has to be the right one.

  6. P.S. ...and your still spreading seeds - the seeds of your thoughts that will germinate into understanding.


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