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Friday, December 3, 2010

Each day is a what?

A very significant anniversary

   3 December. Of all days in the past year this is by far the most significant anniversary of all for us in our beautiful household. It is one year now to the day that I had that first seizure that turned life for my family and me upside down.

24 Dec 2009 - 'ten months'

   On Christmas Eve last year, the brain surgeon told Tracey matter-of-factly that I could expect to have ten months to live, if I followed all the usual therapies. I didn’t have a blind clue what those therapies really were. Nor could anyone really predict what my quality of life would be throughout that time. I wouldn’t expect them to. If you look at this, you can see that if the tumour expands, it could go in any direction, most of course not even indicated here in this over-simplified but useful illustration. So far I have been relatively lucky that the affected areas for me have not been so critical for maintaining an acceptable quality of life for most of the time. The tumour could have developed in worse places. It could have spread to worse places by now.

An extension....

   Ten months may seem quite a long time, and there were times through the year when days of it felt like it. But it has been and gone, just like that. I am still here, but only because of attempting a relatively new therapy, Avastin, and I have referred many times to how that would not have been possible without the assistance of family and friends. I am fortunate that I have been able to have Avastin treatment. I am fortunate that it has held the tumour at bay and reduced the inflammation that causes seizures. I am lucky that the side effects have been manageable. So far, anyway.

Dark days

   By August this year, I have to say, it was clear that the surgeon had it pretty right. I was falling apart physically due to the brain tumour activity and the seizures. Quality of life was becoming a serious issue. But Avastin has extended the remission period (maybe 'remission' isn't the right word, but it will do). An acceptable quality of life returned.

   Mind you, my definition of an acceptable quality of life has also shifted with experience of what isn’t. I put up with indignities and discomfort during those ten months that I did not think I could and still regard life as worthy of living. [Note to euthanasia fans, with whom I have strong sympathies – one’s concept of acceptable quality of life can change…. Note to self – I must write fearlessly about euthanasia before long, especially what it is and it isn't. I've earned the right in the past 12 months to write about that. SO much misinformation - and worse, disinformation.]

Blueberry experiment

   This morning, after yesterday’s vigorous physiotherapy on my right arm, I sought to pick up a blueberry with the fingers of my right hand. These were the fingers which warned me of the tumour exactly a year ago. I steered the hand down to the berries very much like a drunk person badly operating a grabbing device for those fluffy toys. I was able to pick it up, but that was only half the battle (just like winning those fluffy toys!) Once I tried to raise it to my mouth, the shaking began, and the berry dropped to the floor.

   What??? In a whole year you can't relearn that simplest of tasks?

   You don't understand. It took me half a year to lose that ability in the first place.... and if I would have attempted to pick up that blueberry four months ago, I would have set off a seizure that made everything worse.

   Things are not always  as they seem.


   I have a lot of retraining to do yet. Same with my right leg. BUT as long as I can think in terms of retraining and not just enduring, that sustains me. Can we all live every day? The only thing that makes me cross with other people these days is when they say, I wish the next week/month/year was gone. Don’t you realise that you are wishing your and my life away? That time – when it is gone - will come soon enough, I promise you. Treat each day of life as a gift, because it bloody well is!!

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