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Friday, January 21, 2011

Man up!

I feel some sense of renewal today.

   Perhaps it’s that the Avastin hit from last Wednesday has kicked in and my body actually believes me this time when I tell it that it doesn’t have to put up with chemotherapy at the same time.

   Last time I had Avastin was the first time without chemotherapy and its knockdown effects, and I don’t think my body quite believed me. Or maybe it’s that instead of a three-weekly dose now being given three weeks apart instead of four is letting it do its job better. 

   This time it feels different, even though the MRI last week (it seems longer than that!) showed renewed tumour activity and stronger indications of inflammation around it. What the MRI can’t show, if the previous one was two months before, is exactly when that increased activity started, or its pace. It could have been slow and continuous over two months, or it might have all happened in the last fortnight before the MRI was done.

   There's just no way of knowing.

   All we have to go by is the increase in headaches, woolly-brain syndrome*, memory failure and the feeling of imminent seizure. In some ways it would be nice to know (OK, interesting to know then) but wouldn’t change anything. 

   Anyway, I thought I fell short of Kaylene’s expectations at physiotherapy yesterday. Yes, it was well before Christmas/New Year since the last visit and the temptation to indulge a little had not been resisted – which I don’t regret – but when we tried doing certain physical things with the right arm during therapy, I think she expected better of me yesterday. 

   I expected better of me even though I hadn’t done enough to have the right to. It’s like putting the maths book under your pillow and hoping the equations will seep into your brain. Probably won’t work - actual effort is required.

   It’s not that there had been regression – just no progress. So, we went back to the basics and worked on those. Me going red in the face doing things like lying there attempting to make a smooth movement of my right hand from an upright position over to my left hip. Hopeless! The right hand snaked down with jerky ungainly stops and starts, like a crane with a drunken monkey in charge. 

   Anyway, I vowed to do better, as my walking had definitely improved with practice going round the block daily with Sylvia. An hour a day, Kaylene said. I knew that’s what I should be doing already but had been too lazy to do it properly in the past month. 

   No, no whips or hair shirts. No point. It’s easy to get discouraged or lose enthusiasm in the face of a bleak future – a bit like when some fatty starts a diet and after being good for a few days doesn’t seem to be making progress – the temptation to abandon it is strong. No, I am not going to do that. Not yet, anyway. I’m not saying I mightn’t.

   Besides, as I said, a couple of positive things come with positive resolutions. For one thing, the right ankle and foot that have been swollen have gone down a bit in the past 12 hours. It could be because the weather is cooler – it’s a glorious day out there today! – or Sylvia’s long massaging of the foot the other night cleared some veins a little, or the harder work with arm physiotherapy yesterday. Or a better mental attitude – who knows? Work with it, buster.

   I’m just happy with positive things. Yes, I feel better and more … vital, even with the omnipresence of woolly-brain syndrome. The roller coaster is still on the rails though we know it could fly off at any moment. But let’s try to enjoy the ride while the view is so stunning.

*I told you I'd invent a phrase for that fuzziness of the brain, didn't I? Woolly head syndrome it is.... [WHS]


  1. You have to do your homework if you want to pass the test :).

    Don't forget about the power of creative visualisation. Lie back, close your eyes, relax, and visualise the tumour getting smaller, smaller, smaller, smaller. I used to do that for my Reynaud's Syndrome, and it did work. I got the blood back into my hands, albeit briefly. I guess it's a kind of bio-feedback without the technology.

  2. They say it works with losing weight, too!

  3. Does that mean if I lay back, relax, close my eyes, and visualise myself getting smaller, smaller, smaller, that I'll lose weight?

    Perhaps it would work even better if I was on my exercise machine at the same time, pumping away and with every stroke, chanting "smaller, smaller, smaller".

  4. And of course the tumour grows smaller etc with the help of some drugs as well as the visualisation..

  5. Your 'relax and close eyes' would probably help, yes. It's to do with chemical change. There's a lot about mind/body connection that is still mysterious.My internet is playing up so I'm not able to post properly - hence 2 posts here.

  6. Health is always a product of genetics, environment, the physical and the mental/spiritual. We need to optimise the combination and never underestimate the power of the brain to reorganise things to the best advantage of the person concerned. Yet some things are inevitable, otherwise we would have humans around who were born at the time of Will Shakespeare.
    We can improve our survival chances and we can sometimes beat the odds, but we are not programmed in a way that all things are possible for each individual.

  7. For those of us who think this way, there is also the factor of unfathomable karma, whatever we take that word to mean. Boiled down to basics: cause and effect, sow and reap. And just plain bloody luck, good and bad.

    Yes, it would be a tad crowded in here with all the creatures that have ever lived elbowing for space. The mystics say that we are all one, therefore, nothing comes nor goes, is born nor dies, or so the Prajnaparamita Sutra says.

  8. I suppose, as was mentioned by Humpty Dumpty in Through the Looking Glass, a word can mean whatever you want it to. “When I use a word,” Humpty Dumpty said, in a rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
    “The question is,” said Alice, “whether you can make words mean so many different things.”
    “The question is,” said Humpty Dumpty, “which is to be master that’s all.”
    My definition of karma is even simpler than yours: there are causes and effects. As humans wihout knowledge of all causes and effects for any event, we just have to pick our way through them as best we can. In that sense there only seems to be good and bad luck.
    The Sutra traps us in words, but we don't have a choice but to try to use them if that's the way we attempt to understand things that can't adequately be described by words.

  9. You wrote that at 12:30am? No wonder you sounded so grumpy. Time to be in bed, sleepyhead.

  10. :) It's all in the eye of the beholder. I didn't feel grumpy at all! My headache had lifted so I was feeling pretty happy.
    Just for the record, in the previous 24 hrs I had slept from 1 am to 6.30 am, 8.15 am to 1.30 pm, and 3.30 pm to 6 pm. 15+ hrs? That IS a record for me. When I hit the wall, I just have to sleep. Still, it wasn't a good day earlier on head-wise, though it's started off better today.
    But now you have me curious - what were the markers in the posting that you took to be signs of Mr Grumpy? I'll admit I was trying to be brief....
    [Signed: Mr Not at all Grumpy!] :) Hey it must be HOT out there today.

  11. For someone who used to find such inspiration from the Tao Te Ching and other similar texts, your comments reflected more the effect of the poison hour. Around here that's about 3:00am.

    Humpty Dumpty had a point (or was it Tweedle Dee or Tweedle Dum?), but I prefer the Buddhist texts for perspective. The "real" experience may be ineffable, but as Alan Watts said, "You just feel you have to eff the ineffable." :)

  12. PS It is stinking hot out here today, and we're off to submerge ourselves in the river. That is if we can hack our way through the shoulder-high grass first.

  13. I trust you found your way back through the jungle, Joan, and that the river did its job. Sounds wonderful. More of the same tomorrow - the heat. i.e. It's that developing cyclone in north-western West Australia that needs to be watched. We always get a heatwave when there's one lurking about over there.
    I always find inspiration from the Tao te Ching!
    Nighty-night. I'm going to bed early....

  14. Grumpy? The poison hour? Oh dear. For someone facing death I think that Denis is the least grumpy person I know.

  15. I forget, Tracey, just how young you are. Lucky girl. Wish I was around 50.

    The Poison Hour may introduce itself to you in five years or so. I don't think anyone I know over 55 doesn't enjoy the Poison Hour somewhere between 2:00am and 4:00am. Even Carl, who is so extroverted and optimistic, enjoys these delightful moments of reckonning.

  16. Hi Joan: the Poison Hour obviously has some specific meaning that I've never heard of before till you used the term. I surely got confused by it and Google doesn't seem to be helping, so it might be a personal expression. Does it mean a time of the night when the weird thoughts come and things lose their proportion? Is it an ironic term?
    Oddly enough, if I'm asleep at any time in a 24 hr period, 2-4 am's when I'll be dead to the world. I think you better enlighten us. This is a beautiful demonstration of the power of apparently clear words to confuse, if the context is missing!

  17. The term "poison hour" was inspired by one of Michael Sharkey's poems. He described so aptly that hour in the middle of the night when we exaggerate all our worst fears. When I use the term, most people know immediately what I mean and laugh, feeling good to know they're not alone.


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