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."
"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.
"Of course. Washer."
"Cold," I said, clear enough. "Face...hot."
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.