unix hag

Sue Blake RIP

2010-12-20T10:07:00.011+11:00

On Friday, 17 December 2010 at 01:00 AEST, Sue Blake died after a long illness. She may be dead, but her memory lives on, as does this blog. We'll add text as time goes on.

Greg Lehey

24

2010-09-09T09:23:00.000+10:00

There are 24 hours left, and I'm too damn busy using them to stop and write about it here. ;-)

Revamp

2010-08-28T22:21:00.000+10:00

With only 276 hours left to the morning of 10 September, today I've started some housekeeping tasks, of sorts. You may have noticed that this blog layout has been dragged kicking and screaming into the 21st century at last, and I've added a couple of photos of me on one of my more withered-faced days, but before losing my hair at least. Just be grateful that you're seeing the tidy efforts happening on the blog, not the corresponding efforts on my house interior space, which I fear is beyond redemption right now.

It's terrible, the tiredness and shifting priorities from anaemia and the hard work of body rebuilding during chemo, always whacked and nothing seems to matter quite the same way as it used to. Then with your last quivering muscle you put things down before you collapse, and they just stay there, for months on end, until they become invisible and you can't work out why there's nowhere to put anything down any more. At least computers have Find and a Delete key that doesn't require a wheely walker assisted trip to the garbage bin. But you know, when I look at the big picture, a whole universe and 276 more hours left to enjoy it in, all this untidy stuff doesn't really matter at all, in fact it feels rather silly to be talking about it at all.

So I was thinking, this blog should be here for a while after I've gone, and I owe it to the youngsters out there to make it less pukey for them. (Don't ask me how I know that anything less pukey is better than the full pukey, I just know lots about pukey things these days. It's my little secret, OK?) And I know people like to see a picture of someone they hear from, it's too hard otherwise, so I made some room to throw a couple up there. Oh dear, that wasn't a good choice of verb, was it.

Anyway, if the new style blog gives your computer or your eyes any grief, let me know and I'll see if it can be tweaked a bit better. The test viewers are reasonably content so far, so I think it'll just about do. You'll see that now, instead of getting everything on a single page when you come here, all you get is the most recent post in full, and over on the side is a list of all the earlier ones, with their first few words. That should make it a more pleasant visit, I think. And I'm really sick of making blog changes for now.

A couple of very capable friends have kindly allowed me to make them admins, so that if something about this hosting site changes and somebody needs to get in and make blog changes to accommodate it, then they can do that when I'm long gone. The blog might stop, but it doesn't need to die just because I do. Oh yes they're gonna let you know when, too. According to statistics I'm supposed to pop off some time around 9am on 10 September this year, not too far away now!

275 hours to go.

Party

2010-07-22T07:01:00.013+10:00

Routine, same as last month, same as six months of the same drug last year. Hooked up by cannula to the dripping chemotherapy drug, I sat back to relax, nibble on some water biscuits, and wonder how to entertain myself for the next couple of hours. Ho hum.

The first water biscuit was nice, but the second had a peppery taste. It made pins and needles on my tongue, and they hurt. Did I say pepper? This was the heat of raw chili. No, red hot coals. I saw a nurse across the room and waved at her, fanning my mouth. Then straight away my hands were on fire. As I sat forward with wild eyes, frantically shaking my burning hands, a nurse came over as another called "turn it off!". By that stage my feet were on fire too, I felt disoriented, and the world around me had changed.

For the next little while I was in a room full of fantasy characters doing strange things to me.

The Feng Shui Consultant

In a single swift movement, The Feng Shui Consultant reclined my chair until it was a bed, and removed every loose object, all my possessions including the glasses I was wearing, to the wall behind me.

The Calligrapher

The Calligrapher was in animated conversation with someone about the correct spelling of my name and my date of birth. I think it was The Drug Pusher.

The Drug Pusher

As their conversation trailed off, I felt confusion overwhelm my brain. There were needles where there had been no needles. I could not see anything but was unable to tell whether or not my eyelids were shut, and I was very puzzled about the oxygen mask that had been installed on my face when my glasses were removed. What's the connection? Was it supposed to help me see? I couldn't quite put my finger on the meaning of this swap, but knew that there was some simple explanation not far from reach.

The Meditation Master

A peripatetic Meditation Master wandered into the room and decided to stay a while, constantly inviting me to "breathe... breathe... breathe..."

The Dutch Bingo Caller

The Dutch Bingo Caller did a wonderful job of calling two alternative sets of bingo numbers at once. I knew she was Dutch, because she used their word for "or" which is "over". It was kind of her to sit right up close to me throughout, so that if I couldn't play bingo myself, at least I could follow both games.

The Mischievous Forces

How some Mischievous Forces became inserted into my body I cannot be sure, but they wanted out. My stomach heaved so violently I felt half turned inside out.

Breathing didn't work any more. There were clear airways and desperate gaping lungs, but no way to suck it in. I'd do what you do, but get only a teaspoon of air, or none at all. Still the Meditation Master called for mindfulness of breathing.

The confusion made it difficult to tell where all the pains and strangeness were located, but a beautiful solution to everything was to let myself be sucked into a deep beckoning sleep. Not so easy. As I sank with increasing speed into the welcoming extreme darkness, a voice cracked through the relaxation.

The Sports Trainer

With a group of those sickeningly healthy and well trained individuals, The Sports Trainer and her bouncy little group were way ahead, taunting me to keep up. "Stay with us! Stay with us!" she repeated until the whole black sinking thing was spoiled. When she finally stopped I relaxed again, but oh no, she caught me out and yelled again. You can't say no to these people!

The Cloned Spies

I peered out of my best slit of eyelids, and saw the chests of three men, all alike. They must be clones. But why were they lined up looking at me? Spies! They're spies! Stamped on their shirt pockets was the encoded version of their job title, "ICU".

The Sentient Bed

Having done all that could be done to my body, forces now concentrated on my bed. First it was a gentle, then a firmer tapping against my legs. Then the bum, back, and elbows all came into play. A second later my body was flying up off the bed, flapping like a fish. The rhythm livened into a full Indian tala performance in which my whole body took a part. When I pressed one arm firmly against the arm rest to stop its movement, the other arm flew into a cadenza of its own. Meanwhile the bed had been replaced with a large block of ice, and I realised I wasn't escaping from this ice bed any time soon.

The Dutch Bingo Caller was going hell for leather. "70 over 50... 65 over 40... 60 over 35" and there she stopped. Game over, I guess.

The characters stopped talking or went away, I couldn't tell which. The tala slowed down and subdued only very gradually, even though the bed was starting to thaw. I opened my eye slits and saw no spies. I was alone, flapping gently against the cold rock bed.

The Human

As I drifted off to sleep, I heard the voice of a human, calling me "she" like an old friend, commenting on the scary colour my face had been and how much it had improved since then. Roused from sleep some time later, I was slid into a wheelchair headed for a comfy bed in a ward. The Human was there again, stroking my precious thinning hair back into place and securing its hair combs, as we wheeled down the hallway.

Of course, it wasn't time yet.

There are still 1180 hours.

Rejoice!

2009-12-26T07:03:00.002+11:00

"The doctors have all discussed your scan results again, and we have some very good news for you! You won't have to have the biopsy we had scheduled! The oncologist can be quite sure now, from your history and this scan, that it is cancer, so there's no need to put you through the biopsy. Isn't that great!" "Um... hang on... last time you were here you were telling me that the biopsy is a quick simple procedure that is no big deal and now you're talking about it like it's something to be dreaded. And sorry, I don't get it, what's the good news part about discovering the early return of my ca... AAAARRRGH"

It's so annoying when you're in the middle of making an important point and sudden blinding pain interrupts. It stops you making the point and completely derails the conversation, which inevitably picks up again somewhere on the other party's point of view side. "So you can go home this afternoon, and be home for xmas. Do you have someone to pick you up?" "Not sure, I can phone around. What's today?" "It's xmas eve." "Oh, right, I see, that's what home for xmas means, of course."

Cast your mind back to the afternoon of Christmas Eve. Cars, shoppers, kids, drunks everywhere, crowds, bumper to bumper traffic. A mad scramble to buy last minute supplies before everything closes down for days. Everyone on earth is in a mad panic. Those who are working are busting to get home, leaving as early as they can, closing facilities early and adding to the traffic stream. On top of all that, it was over 30 degrees and humid. The road between my place and the hospital is a 20 minute bottleneck. Do I have someone to drive me home? I don't think so, or maybe yes but at what cost.

Home for xmas, that's a big deal, yes. Face to face with the practicalities, like the good news about the cancer returning prematurely, when you get down and look at it it's not so thrilling. (Yeah, I'm such an ungrateful wretch.) At my week-abandoned home I have no milk, bread, veggies, nothing to sustain me over several days of shops being closed. On this day, at this time, stocking up is probably impossible. The presents I started gathering lie incomplete and unwrapped. Incomplete I can fudge, nobody expects too much from me this week, but gee, if I'm gonna be going along for xmas and exchanging gifts, what a drag if I can't wrap them properly. Ever tried buying wrapping paper at 6pm xmas eve? Or milk, or pain medication for that matter?

Oh, sorry! The jubilant doctor was quite correct. Turns out I did find someone willing to spoil their xmas eve rush to get me home, and the pain did subside long enough for me to drive to the local shops without collision, and I was able to find a chemist and also bought a bottle of milk just before everything turned into a ghost town. I was able to scrape together enough bits from my hoard to wrap the presents fine.

And I didn't have to worry about having no food because, and here's more good news, in this state I can't eat anything! "... and this type of bowel obstruction can't be corrected surgically, so we'll start you on chemotherapy as soon as possible. The chemo clinic is pretty well booked out but hopefully we can get you in around the middle or end of January." Oh thank my lucky stars, only up to 40 days more of this pain, plus however long it takes for the chemo treatments to subdue the cancer.

They're giving me a 6 month course of it. They say that if the chemo doesn't work, don't worry. There will be a check after 3 months of chemo, and if there's been no change they have many other chemo drugs they can try, so I guess we keep starting that six months again and again until one works. And how much time do I have? Ah, forget it. They will do whatever they will do, for their own shrouded reasons, and there's nothing I can do to change any of that.

Meanwhile, thanks for the morphine, it was lovely, but where's my take-home supply? Yeah, thought so. Patience is a virtue. Sorry, I don't need no stinkin' virtues.

Changeling

2009-09-18T02:28:00.006+10:00

Last year, I was often kept waiting. Aren't we all. When I had to wait as long as five minutes or more, there were usually apologies, explanations, and alternative quicker or postponed methods were offered. This year it is common to be kept waiting for up to an hour, or two, or three. There is almost never any apology, explanation, or even acknowledgement that I have had to wait an extraordinarily long period of time. This year, I'm not supposed to notice that any time has gone by, because I'm assumed to have plenty of time and absolutely nothing else to do. In fact, long boring waits have been offered to me as a kindness, to help fill my infinitely vacant hours and return me to my proper brown-nosed grateful state. There are 8568 hours.

Last year things like this would have been discussed ahead of time as an automatic human courtesy. This year none of these things are vocalised, as if it can't speak and it just takes the action offered in kindness and we hope it won't take it upon itself to respond badly (but if it does it can't help it poor thing).

When caught short for amusements, last year I would have been offered something like a scientific or technical magazine, a cryptic crossword, or engaging conversation on topics ranging from society and culture to DNS server configuration or the latest discoveries in genetics. They would be offered first, and acceptance would be necessary before proceeding, of course. This year I am assumed to like only housewife magazines, romantic novels, simple card games like snap, and trite conversations about the latest celebrity pregnancy or who won the meat tray last week.

If there are others to be entertained as well, we may be organised to play the group games that are typical of children's birthday parties. None of this is offered, it's just bestowed without option, without comment, and I feel under tremendous pressure to accept these insults with expressed gratitude. After all, they mean well don't they. Yes they all mean well.

Last year, as I walked down the street the other pedestrians hardly noticed me. In crowded situations people politely look away to help preserve each other's personal space. This year, as I walk along people look me straight in the eye, put on a big cheesy smile, the patronising look (with or without the wink), and make very sure that I hear them say "hello" clearly as we pass. People I've never met. I've been told it's because of the hat or scarf I wore, but I saw no other hat or scarf wearers who had the whole neighbourhood assuming such unwarranted familiarity.

Last year I used to phone Mandy and chat about computers for hours on end. Now when I call she only wants to talk about my health. Have I lost a friend? Of course not, she's always there for me, even more so now. But the difference is that I'm not there any more. We've both lost me.

Last year I was kept, wisely, away from very young children and delicate elderly who had sheltered lives, or anyone else who could not handle the F word and an extremely frank and explicit mode of speech. This year people panic to keep the "bloody"-sayers out of my hearing range.

Last year people wouldn't touch me unless we were being intimate, brawling, or accidentally colliding. This year everyone and their three cats wants to paw me, and they seem to think that I'll like them doing it without asking first.

Last year I enjoyed doing a lot of different social activities that were a bit difficult to fit in after full time work. This year I'm encouraged to attend more activities and offered transport to my chosen groups, but only if they are during pensioner-business hours. My normal activities, my already established social groups, are out of bounds due to dark and distance. Sure, in my copious free time I could make new sets of friends by playing bingo and whatever other intellectual challenges are available before 3pm each day. After all, nobody will help me unless I help myself, will they.

Last year people used to come to me for advice and guidance, whether for business or artistic or technical or personal matters. Since long ago, in some circles I was dubbed Aunty as a form of respect for that role. This year, new acquaintances and even strangers seem to think they have permission to instruct me on how to live my life, how to think, what to feel, and what attitude I should hold towards human existence in general. They seem to think I am ignorant of the most rudimentary life skills and understandings, and that it is their role to instruct me, in monosyllables, and mine to show gratefulness. But they do mean well.

Last year there were some people who would call in for a cuppa occasionally, or phone and invite me to go out or eat or do something with them. This year I am invited to charitable rather than social events, and some people now only visit for servicing on demand. I prefer to be "serviced" either by people I don't know, or friends who remember and like me. But come now, mustn't be ungrateful.

Last year, if religion was mentioned I'd be asked what mine is, and the answer would be respected. This year, I am assumed to be Christian, prayed over, and given biblical pep talks uninvited. Some go so far as to weep, as if they must proxy for my mysteriously inactive tear ducts. Should I feel guilty for upsetting them by having a fate, I wonder?

Last year my companion parrot used to shout "Tired!" when she wanted to be covered up, "Coming back?" when I left the room, "Wanna cah..." when she wanted a cuddle, and "Outside!" when someone came into the yard or knocked on the door. This year my companion parrot shouts "Tired!" when she wants to be covered up, "Coming back?" when I leave the room, and "Outside!" when she wants a cuddle because tricking me gets faster results than asking directly, at least the first few times. She's a good mate.

Last year the postie used to ride her motor bike up to the front door and honk the horn when she had a parcel to deliver. She still does. She has no idea which houses contain people who are sick and dying, so she treats them all the same. I never have to be on my toes to show gratitude and hide offence. I don't know her name, but I need my friends to be like her.

Last year I was myself.

This year I am myself.

Something, something else, changed.

8760

2009-09-10T00:12:00.003+10:00

There are 8760 hours.

On 10 September 2008, one hundred women were diagnosed with an illness.

On 10 September 2010, according to statistics, only 45 of them will still be alive.

Today is 10 September 2009, and I am one of those hundred women.

Death comes a long time before our bodies pack it in. The switch begins at the moment of diagnosis, and is complete within a few days, or minutes.

Real death is caused not by illness, but by friends, relatives, colleagues, care givers, bureacrats, medical staff, and the people you meet on the street. They switch you off in their minds, "click", and you don't exist as you any more. There is no other way to exist. Having just been thrown a robbing diagnosis, it's not even slightly interesting to be existed as anyone else.
So everything stops, and they go on muttering at some imaginary person pasted onto your weakening body. Complete. Irreversible. Missing. Death.

The universe as I knew it has been gone for a year now. Nothing is as it was, and never will be. Some things are much better, but most things quietly ceased their existence while I slept that first night.

Why have I decided to use this blog? There's more freedom over here, where I can think out loud without making weeping do-gooders blush with embarrassment in my presence. Because on the Internet, nobody knows you're dead.

There are so many things I cannot say from my daytime body, things that must be said, recorded, the truth about what is happening to me while I move ever closer to the final statistic.

That's why I'm inviting you to share the next few months with me, while I chew through my remaining 8760 hours, by the dim glow of the first 8760 hours. It won't always be pretty because it has to be frank, but sometimes it will be entertaining. And it might help someone to help somebody else to actually live their given hours.

There are 8759 hours.

Mushroom

2007-06-25T23:05:00.001+10:00

Good morning, good evening, welcome to my little gui scribble pad. I can't predict what you will find here, but it probably won't be much about unix.

To tell you the truth, I don't like blogs much. Not much at all. Actually, I dislike them. After twenty years of using the Internet in all its forms, I can hardly believe it has come down to this. What a formalised and power-unbalanced way to try to communicate! Not to mention the ads and spams and soapboxers...

Do you like mushrooms? Thought so. I hated them, with a passion, but most of my friends loved them. So I started tasting little pieces of mushrooms cooked in various ways. Some of them weren't too revolting, but the best of all was raw, they tasted pretty good. There wasn't the overpowering taste or the black slime, and they worked quite well in a salad or sliced on a cheese sandwich.

Then I got bolder and tried cooking them myself, with fried onions, or under piles of grated ginger and garlic. They tasted pretty good. Now I enjoy mushrooms, and could happily eat them every day. Sometimes I do.

Now every other Internet user likes blogs, it seems. All except me, and I can't figure it out. Do they not realise what else the Internet is capable of, having only arrived in the last couple of years? Is this format one of the very few options they are aware of, and the only one of them that provides for exchange of ideas? Or is there something in it, something that I can't appreciate yet, something that I might like if I took a little taste then cooked it up my own way? Could it become habit forming? Let's see.

For as long as my supply of fresh ginger lasts, I will treat this blog as a mushroom. You are welcome to join me.