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

Thursday, August 29, 2013

Let me be clearer

It's 3.30 AM. I wonder which bird I'll hear first? Maybe I imagined it, but I woke at one point, and thought I heard the storm-bird, a true harbinger of spring. It foretells the storms of September, but officially, there's a few days left of winter.

    I'll be listening. All predictions that I would never see autumn were wrong. And now I've seen the spring blossoms.

    Whose predictions? Mine. Wrong. Rule 1 for someone whose life seems to be running out. Never anticipate.

    But at this end of the life spectrum, I've been never more entitled to make calculations. They aren't encouraging.

    Today I start a 24 hour collection of urine. Tomorrow, Tracey will take it to Pathology for analysis. It's the most critical one yet.

    I hear several little birds now, looking, I guess, for the early worm, or the best of the nectar. None are close by, but funnily enough, one sounds like the koel, my storm-bird, except not in that familiar mode. I'm probably mistaken.

    I had no intention of being awake now. Tracey was very tired at 11.30 pm or so, and needed to go to bed. She likes to see me securely in bed first, so she'll have a chance of less troubled sleep. I've had an afternoon sleep and wanted to go on for another hour, to write what I'm getting to, but I went to bed anyway, Good choice all round.

    Something had me by the throat. It wasn't exactly strangling me, but it felt like large hands were curling around my neck and squeezing tighter and tighter. I knew it was a seizure, but instead of the warning from my right arm or fingers I usually get, this time it was straight for the throat, tightening gently at first and then with more strength.

    It's not like I was surprised. Since 6 PM yesterday, I'd had three, starting in the fingers and making a grab for the throat, leaving me emit a noise that was supposed to be speech, but was garble. I was trying to tell Tracey something, but gave up when the same strangled sound came out.

    "Don't try to speak. You can't."
    I couldn't, but I wanted something.

    "W.... Wa...." was as far as I got. The seizure was subsiding.


    It made sense, but I waved it away, and tried again.

    I opened my hand, and made a circular motion across my face.

    "Wa... Wash...."

    "Of course. Washer."

    "Cold," I said, clear enough. ""

    She was inches from the bathroom. It felt good – water from the tap at this time of year is just a few degrees above freezing. I cooled my face from the effect of the seizure, and ran the washer over my hair. Except for the slurring in the voice, things went back to what they were. On the knife-edge.

    That was one of the times before I went to bed. No wonder Tracey wanted to see me tucked up. Standing up after a seizure is a risky business.

    So after being jolted awake by the strong seizure, I wondered what the time was. Usually I'm good at guessing that. I reckoned about 3.45 AM.

    It was 1.30 AM – the time I often go to bed first time round. I tried to settle back to sleep. The Kindle, I thought. I'll read a little and that will sort it. Never fails.

    I turned it on, but I'd forgotten it was so low on battery that it went on strike. There was no way to recharge it without waking the whole household. Just go back to sleep.

    It's not as easy as it sounds. For the first time since the hospital fall, I decided to try to sleep on the right side. I was pleased to find that the muscles all down that side weren't too painful to sleep on.

    The advantage of sleeping on that side is that with my strong left arm and hand, I can just reach the bed frame and use it to turn myself over well on the right side.

    One-handed, the doona is hard to arrange when the light is out, as it must be before I try to turn on my side. Suddenly it's all complicated, but I managed something to keep me warm enough. The upper leg was hurting but it was bearable. I drifted back to sleep.

    Bang! I'm taken by the throat again, this time, harder. Another seizure, strong enough after it's finished to leave me with sore neck and back muscles – ones that haven't been tested before like this. I feel like I've swallowed a pineapple – one of the old rough-leaf ones. My face becomes contorted and my head twists and shakes. My vision is distorted. I lie still until it's over. There's nothing anyone else can do about it short of bombing me out.

    That's it. I get up. It's 3.30 AM this time, and I start writing this.

    Now that I've got this far with writing, it's 5.30 AM. I had a couple of other dramas en route – and the seizures don't stop, but we've both had more than enough, right? I'm going back to bed and come hell or high water, this time I'll sleep.

    What happens today decides my future. If this 24 hour test fails again, and Avastin ceases, I'm going to get more and stronger seizures, because I'm at the limit of other drugs. You may think you've seen it all in this blog before. Don't be misled by my failure to lay it on the line.

    Medical science can do only so much. I don't expect miracles. Worse, I've still been beating around the bush with the posting. Too many birds, not enough substance. 

   Maybe I've made it a bit clearer with today's posting here. I try to look after too many people beyond this house.


  1. Ah..dear Den...dear Trace...
    The pointy end of the pointy end.
    If karma had anything to do with it, you'd wake up tomorrow and all this would be a ghastly dream. That would be the right and proper fairytale ending for the likes of you both, two of my/our very favourite people on this planet.
    But as fairytales are not true, what is here is real life, real love, endurance, determination, insightfulness, mindfulness. No need to mention too much about the pain, the terror, the grief, sadness and hard work of it all.
    Bloody brain tumour.
    Fingers severely crossed for PTU test.
    Thinking of you both. xx

    1. Thanks, Ros, but somehow I get the feeling that we in the west feel we have a right to a good deal more of life's cake than we should. Even at our worst, the majority of us have health services available to us that a young wife in an African village who's contracted AIDS from her husband has no access to, and is likely to die a miserable and tragically untimely death.

      The irony in this is that you and Dave have, in my opinion, drawn shorter straws than 90% of Australians in a health carer and recipient stakes. Yet you place tremendous value on what you have.

      We have to judge fairness by many other criteria, for I know that you both regard yourselves as having been very fortunate in many ways, just as I do. There is not the faintest suggestion in what you've written the burden you both bear.

      I suppose I should speak only for myself. Really if there is any hint of criticism here, its a general one. I'm thinking only about those who don't value enough what they've got and imagine they have an absolute right to much more.

  2. And still you keep up the absolute objectivity of your blog, Denis. How do you do it? This is completely beyond my comprehension. We all knew that this time was coming and can only hope that today's test gives you another reprieve. In the meantime, as always, we are thinking of you and Tracey with love.

    1. What you say surprises me, Bob; not in a bad way, but I think you've been much too generous in your comments, because this was a rather self-centred post. But I understand where you're coming from in that I do try to be fairly clinical even in personal descriptions.

      Thank you, as ever.

  3. Sitting under the dome of the State Library of Victoria, thinking of you and Tracey and your household. Your journey is solitary but you are not alone. Much love

    1. You always have the talent for expressing the most heartfelt sentiments in the fewest words. "...solitary but...not alone" is what I always feel. Thank you, Z.

  4. I've always managed to read between your lines Denis, but the lines themselves are so beautifully and expressively written (a small, tender part of me almost wishes they weren't),and doubtless they will continue so until they stop, and in that, there is such grace and courage, and an immeasurable gift of love and encouragement for all of us who stay alongside in a virtual way because that is all we do. xx

    1. "... all we do" means a great deal, Trish. Thank you so much for your kind words. I have no idea why you might think yours are not far more eloquent than anything I write. I'm at a loss for words. Lucky it's not a competition!

  5. My thoughts are with you. Life isn't fair. I have spent a day thinking over these great questions as I, a non believer, spent the entire day at the funeral and aftermaths of an uncle of my husband. He was 105, and very well until very recently. To boot, as a former C of E minister he (and his close family) have the added benefit of a deep and unquestioning faith. He was a lovely man and I wish him no ill, but coming back home to read your latest post and travelling to and fro with a sister in law whose 30 year old daughter has breast cancer and the BRACA 1 gene, I wish illness and death, as life itself were a bit fairer. Anne P

    1. Coming at the end of the comments, Anne, I'd be repeating things about fairness, except that you're viewing things from a somewhat different angle from Ros.

      Faith is a very comforting thing for those who possess it, and I see it through faith expressed in so many traditions I've spent my life studying. That's the reason I see faith as an umbrella over all religious expression throughout the world. Good, kind people are so with or without it.

      Fairness just can't intervene in life matters. Odd as it may seem, unfairness as we understand it is a necessary element of life on the planet, whatever we might wish or hope.

  6. Whether you prefer positive energy or prayers - or both! - it's being sent your way for a good outcome to the protein test. I'm so sorry the seizures are attacking your breathing now, it's a terrifying occurance. But, as others have mentioned, you (amazingly!) keep your matter-of-fact tone in your updates; the fact of the updates alone still amazes me. But, greatly cheered you're still able & willing. Much love to you & Tracey, Pegs. XXXOOO

  7. Anne - 1984 studentAugust 30, 2013 at 6:06 PM

    Denis, your continued courage amazes me; it shouldn't. My husband had Motor Neurone Disease and showed the same stoic acceptance of whatever each new day brought; each day, he was a little wearier and there was more to contend with. The few hours respite Tracey will be getting will help her to keep on keeping on. I salute you both.


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