Hello Cruel World
Friday, December 31, 2010
On the Web
The Spider

A noiseless patient spider,
I mark'd where on a little promontory it stood isolated,
Mark'd how to explore the vacant vast surrounding,
It launch'd forth filament, filament, filament, out of itself,
Ever unreeling them, ever tirelessly speeding them.

And you O my soul where you stand,
Surrounded, detached, in measureless oceans of space,
Ceaselessly musing, venturing, throwing, seeking the spheres to connect them,
Till the bridge you will need be form'd, till the ductile anchor hold,
Till the gossamer thread you fling catch somewhere, O my soul.

Walt Whitman 1819-1892

(Golden Orbs recolonise Olympic Park - Sydney Morning Herald, 10-Apr-2003)
Saturday, November 21, 2009
Hot enough for you?

Today was a blastfurnace wind, from just before dawn, when I looked out on my severalth trip to the bathroom to pat myself down with cold water on a face washer, and the eastern sky was a glaring bright hazy white. And I had to spend considerable time out in it stocking up for my trip (opaque, heat-reflective umbrella didn't help, cos most heat was in the air). Brain a touch touched.

In Sydney & nearby, daytime maxima have been high 30Cs to low 40Cs (~100-110F), and minima over inland night have been around 25-30C (77-86F). Coast tends to be a touch cooler, but more humid from the sea-breeze; Western suburbs just lie there and bake in shimmering mirages. Adelaide, & other, places have been rather higher for rather longer; a week or more. Records were broken. Other records melted. (Dubai & the like, OTOH, chortle at such fussin', when they reach 50C+ (120F+) regularly.)

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Burial & other body solutions

BTW, can anyone help, or point me towards help, with information on the usefulness of bodies with metastatic cancer for assorted organ transplants. Would cornea or skin be possible, if nothing else?
Alternatively, should I try contacting various medical schools or anatomy museums to find if they'd be interested in a massively-surgically-altered specimen as an example? Not sure about 'plastination'.

Would have for all these to make sure to, say, shave hair & take some nail clippings for modest burial. Wonder if anyone'd like to try some Victorian-style hair jewellery?

If it appears beforehand no-one wants body or its parts, I'm hoping for a "natural" style burial on a rural hillside I own. There's a polished stone & fossil necklace I also own called 'Drowned in Stone' that's already set aside to wear. We can tuck part of my partner's ashes in too.

(Cunning plan is for a comfy, back-supporting, scoop-seated stone bench on top (local stone is granite), so people can rest & admire the view, with bowl (have a glazed ceramic one might do) on shady side for animals (with climbing ridges for small ones that fall in — seen too many drowned) & water-draining seat, and inscription on back. (E. longiflora decoration wherever — ends?) Also hoping for carefully selected local small shade tree at right position for hottest times. Or *maybe* peppercorn, but needs more distance. For *real* fancy stuff, they could drag a lump of Pyrmont sandstone — there are some in my backyard, or use a rough chunk — up, flatten the top to a slight skillion (water-shedding) & prop it in a convenient spot nearby on the hillside for spreading a small picnic while you're sitting there. Can't work out a place for chunks of the fossil-rich mudstone found under the sandstone layer, it's too soft to leave exposed for more than a few years.

If the council isn't keen, well it'll all have to go up near the rocky summit, tucked into the dry? sclerophyll woodland. Should blend in well, esp. if they do the 'old paint the new stone with milky water' trick to get the granite scungied up.)

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Wednesday, November 18, 2009
Fade away or gradually die …

Some more sad news Edward Woodward's BBC Obituary

I mentioned Breaker Morant just recently elsewhere. Callan seems to have branded itself into a generation, too. Glad now DVD releases are available. The Wicker Man has left quite an impact as well. Saw him only a couple of weeks ago, doing a good job in a recent Britcrime TV drama. Only one I can see in IMDB list is Jonnie Johnson in The Bill – which I virtually never watch, maybe it was spotting him sucked me in?

It sounds like a pretty good life overall: family together, not too much financial or physical struggle, doing good work in profession he enjoyed. Always sad to lose his like, tho'.

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Friday, November 13, 2009
Contemplating yesterday

Don't really like that word "palliative", when it's used in my direction. "Curative" or "healing" would be much nicer. Doctors say most important thing is to make my quality of life as good on possible for as long as possible.

OTOH, not having something to "make me more comfortable" is an even worse thought. Much medical treatment is a lot like torture with good intentions (even with pain management). I've definitely learnt cowardice, like the burnt child fears the fire.

Should really get on with photo books & "arranging affairs" (@#!&*%*#@!! paperwork). Probably in some kind of denial/ultimate procrastination. Don't appear to have learnt anything important from the last 10 years of "teaching experiences". The stupid must go right to the bone: Cue one of Pris' better-known quotes. Still, market for inspirational books (Above It All: My Spiritual Journey from Cancer to Climbing Mt Everest in a Wheelchair*) must surely be glutted now. So many people are getting to ages of more illness, there'll be more authors than readers.

Feel better after blood for anaemia yesterday (Vampire Mez. Practicing accent: Wampyr.). Charcoal tablets seem to be working, too, unless some other thing is helping reduce gas explosions. Will add to stock for trip. Another landmark: got Nelune car lift to hospital because was scared if I walked same gas blow-out would happen as the other day when I tried to go to pay bill, shops.

Was going to discuss "palliative" with friends — being up at hospital with them, back in Rehab (separate room, with openable window, own toilet, relative peace and quiet), after treatment and appointments — but got distracted talking and dealing with odd problems that popped up.

Hope your Black Friday went well.
* Note: Not entirely a joke. There's a new one out about a couple of Aboriginal(?) footballers(?) travelling out in the desert, one of whom is in chemo/radio therapy at the time. (So either it's a short trip or they've spaced out treatments longer round the trip or it's actually just after treatment.)
[UPDATE] Kurt Fearnley, who normally uses a wheelchair because he was born with the lower part of his spine missing, went back to his childhood form of locomotion — pulling himself along by his arms while his much-shrunken legs trail along after his body — to crawl along the entire Kokoda Track because the steep slopes & muddy ground made using a wheelchair impractical. (Up & Down Stories – Kokoda & Me) While I have to drop my shopping and lay down for quite some time just after going around the block and climbing the 57 steps back to my flat, and he's an athlete. (See news.smh.com.au/ breaking-news-world/ exhausted-fearnley-finishes-kokoda-crawl-20091118-ilga.html.)

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Monday, November 09, 2009
A different 9/11 remembrance

Since the start of this blog, usually on this day, running up to Remembrance/Armistice Day on 11/11, I commemorate the 9/11/1938 Night of Broken Glass (Kristallnacht), also called the State Pogrom Night. Especially since, not only due remembrance for itself, it has examples of political and propaganda uses, twisted mendacity in language, an interlocking step-by-step spiral of violence and oppression, and breathtaking fraud (including monetary).

(2008) Crystalline: 9/11 (9th November)
(2007): It's 9/11 (9th November) again – Kristallnacht
(2006): Anniversary: The First 9/11 — Broken Glass & Ashes
(2004): The First 9/11 — Broken Glass & Ashes
(2003): Repeating the Kristallnacht 9/11 entry from 2002
(2002): Remember Kristallnacht – 9/11/38 [In Australia 9/11 is November 9th]

One year, I remembered another sad incident associated with this date: (2005): 9/11 Returns: Stari Most at Mostar

There's a collection of historic German November 9ths at selenak's LiveJournal, Musings, originally from 2008, in the almost-immediate aftermath of Barack Obama's election as US President. (http://selenak.livejournal.com/429403.html)
(The Yorkshire Ranter added a couple more in comments.)

But this year has happier memories. It's the 20th Anniversary of the 1989 Fall of the Berlin Wall. Perched on my grandmother's living room floor watching the B & W television showing coverage of the Building of The Wall in 1961 is one of my earliest datable memories. So reliving those days and nights 28 years after that and 51 after "the start of The Holocaust" — well within a human lifespan — it's good to celebrate its joy.

Here's some quick links to places where thoughts and memories were shared about this: It was twenty years ago today. As well as some in the Musings LJ post mentioned above, this year's 9/11 there is called Freiheit schöner Götterfunken... (a poem later altered to Freude schöner Götterfunken).

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Sunday, November 08, 2009
Chemotherapy + Gripe update

Wherein Much Tedious Matter is Related
Hoo boy, whatta *fun* few weeks!

Last gripe was a few days after start. Survived a week or so more on water, peppermint tea, watered juice, watered stock, crystallized ginger, barley sugar & some mints. (Don't know why I forgot Gatorade powder I keep to make up into drink for just such emergencies.)

Seemed to stabilize, so l tried adding jelly, plain rice, rice noodles & dry crackers, e.g Ryevita (not all at once) to existing diet. Found only small amount of solids was tolerable. Could take more as long as each serving was small, so I would divide a meal and eat across a longer time. Could be that stomach was shrunken, but also having trouble swallowing. Worrying. Too sick sometimes to get out at all. Had to postpone tests, therefore chemotherapy, a week.

After not being able to get beyond that stage without prostrating myself, reading up on side-effects & discussing it, I tried stopping the oxybutrynin (pill suggested by non-cancer specialist). Improved (was able to do CT scan & blood tests), but weakness, tiredness, low stamina persisted. Never fully well. Also, non-cancer symptoms being slightly improved by pill came back.

Mixed feelings that the tests showed 3 x usual blood calcium. It was coming out of my bones, like osteoporosis, which might account for some of my backaches. Also makes you feel dreadful, which fitted well. Pausing chemo & taking new megestrol tablets to "push the calcium back into" my bones.

Touch worried that the cancer is getting stronger. Been taking new pills & feeling better, I think.

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Friday, October 23, 2009
One Month on

Dustday + 30

Previous Dustday entry (Dust Day (23rd September, 2009) in Sydney)

Statr for Flickr daily graph

It used to be a nine-days' wonder. Everything's faster now.

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Friday, October 16, 2009
Chemotherapy + Gripe

NOTE: Skip this to avoid whinging, complaining & yukkiness.

Think I've washed most of the cytotoxins and their accompanying protective drugs out, as far as possible, so started on the new drug from specialist.

Eating as healthily as I can manage, with fresh fruit & juices, vegies, fish, organic meats & milk, nice bread, etc. Have the best emergency low-prep foods I can manage — low-processed frozen food, parboiled rice, dried pasta from different grains. There's a few made-up "boil in the bag" meals that don't need freezing & some canned stuff in case of times when I just can't manage anything more.

Near low-immune part of cycle, so I'm doing things like throwing out any slightly-suss food, rinsing plates & utensils in boiling water, cleaning surfaces, using different sets of rubber gloves for handling different stuff, washing gloves in disinfectant, washing my hands with sanitizing stuff before eating, or after toilet. Being extra careful not to get nicked or bruised, staying away from crowds.

So WHY am I exploding hydrogen sulphide gas from both ends like a locomotive blowing steam!?!?!? Diarrhoea for about 24 hours. Now this morning, without more food today than some ginger to try and settle stomach, brought up half a litre or so of bright yellow bile. Bleurgh.

Is it new drug? Did I pick bug up in Rehabilitation Unit, where they had gastro going round erlier? Was food more suspicious than I suspected? Or what? How?

Just what I need when I'm already weak & tired & really low & washed out. Bleah.

And I definitely don't want to take this in to sick friend, or his partner. Will try some peppermint tea soon. Maybe barley sugar to keep up energy.

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Wednesday, October 14, 2009
Friend's Stroke: some wonderful news
I haven't been too well, so haven't written much, and, worse, haven't been to see my friend as much. So it was great first to see him with a new tracheotomy that meant he could put a finger over the tube and speak, and in a separate room.

Then they removed the trachie and the nasogastric tube altogether! Talking! Started him on fluids; soup, yoghurt, etc; then puree/mashed meals. Now he's out of the hospital building, over in Rehabilitation Unit — same building where I was in hospice care, on floor above. So back to shared ward.

If you've seen 2001: A Space Odyssey, the mashed meals remind me of the coloured goo in squares on a white rectangular divided plate that Poole and Bowman ate on the Jupiter. Except they are served out by what may be an icecream scoop and the plates are round.

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Tuesday, October 13, 2009
Health in the USA - Words Fail (Repeated from Earlier)

Health Care Horror, from 2006, though original story is 1998. I'm worried this lady isn't around any more

Home » Protecting Patients » Patient Told To Reuse Colostomy Bag For 5 Days
PERMALINK: www.consumerwatchdog.org/ patients/ articles/ ?storyId=16193

Repeating the whole story here, because the link's changed at least once already, and might get lost. As a fellow colostomate, this is a particular horror for me.

CONSUMER STORY — May 06, 1998
Patient Told To Reuse Colostomy Bag For 5 Days
Consumer Watchdog
Michelle Leasure - Baltimore, MD

As told by Michelle Leasure:
I am a disability advocate and work for an agency that not only serves the disability community, but is staffed by people with disabilities. I have several disabilities, one of which is an incontinent ostomy. I do not have control over my bowels, and must wear a colostomy bag to contain my waste. Under Maryland law, ostomy supplies are 100% covered by insurance agencies.

When my employer changed insurance providers on September 1, 1997, I could no longer get the supplies I required to live. I have had my ostomy for three years and this was the first time I had ever had problems. I fought with my insurer for two months before I received any supplies, and at that time the supplies were incomplete. Many of the doctor-prescribed items were denied as unneeded, so I was forced to purchase them myself.

At the time, my salary was $500 a year above the poverty level and I soon found myself in financial trouble as a result. When the few supplies I got at that time ran out, my co-workers and myself went back to battle with my insurer, and it was January before I received more supplies, again not all that I needed.

I was told by my insurer that I was expected to use disposable bags for five days each. Now pardon me for being so graphic, but it's necessary. I work in the public arena, and I was expected to (and this is verbatim) "wash the bags out in the public restrooms that I frequent, walk (I use a wheelchair) to the sink with my ostomy exposed, and finish washing the feces out into the sink, then reattach it to my flange." It would be the same thing as asking a mother to empty a diaper, rinse it out in the sink and reapply it to her baby for five days.

I have systemic lupus, so I also have a compromised immune system. To even ask anyone, let alone a person with immune problems, to use public restrooms in such a fashion, is sheer and absolute insanity.

In mid-April, I finally received a full month supply of ostomy products, but I had been out from work for 2 1/2 months, living in my bathtub, because I had not had the supplies for that long. I even spent a week in a nursing home as a result of this and had another stroke, requiring a hospital stay, because of the stress from this battle.

I am a person who could get the medical benefits I require from Medical Assistance if I were to quit work and go on welfare. The bizarre thing is, I want to work--and I am paying into the system, but cannot get the services I'm entitled to and work so hard for.

I was supposed to have corrective surgery to fix the bilateral spinal implants that "fell out" of their socket and are currently free-floating in my right side. I actually have to push them back inside my body several times a day and night. My insurer has only one doctor they will allow me to see that can do the work on the implants and he is unavailable to see me until the end of May. That is just to see him--I have no idea if he will be able to schedule the surgery then, or if I will have to wait another six months. I cannot stand the discomfort much longer.

I have been told that because of the ERISA loophole my insurer is protected from legal liability for delaying and denying the medical care that I so badly need. I am convinced that if I were able to hold my insurer legally accountable I would be getting more attentive care.

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Wednesday, October 07, 2009
Chemotherapy: 3rd cycle (2009)

So this is the start of the third cycle of this set of chemotherapy. This time haven't had much of an upswing at the end of the last cycle. Feeling tired. Apart from that, everything went without problems.
Also saw specialist for results of tests and scans. They couldn't find any problems, which is sort of good, though it means we can't pinpoint any cause for my symptoms. Normally they'd do an endoscopic examination to try and see anything that might be there and not shown up, but will wait 'til after chemotherapy. In meantime there's some tablets I can try to see if they make a difference.

I used opportunity of being out to grab bus downtown with assorted medical receipts, including that appointment, to Medicare. Good refund, covered most of the water rates I'd just got. Feeling a little cheered, I caught bus to Daily Planet* Foodcourt and got two bowls of different pho to take home. I can usually get two meals from each. Very nourishing and easy while I expect to feel poorly. Then bus home.

TravelPass is a great blessing for the frail and ill. It lets us get out and do things we wouldn't have the strength to do if we couldn't catch transport for short jumps. I worry the new card system won't be as good — there were nasty hints during previous contretemps about an 'integrated smart card system'.

[Toilet: before setting out; reaching hospital; during chemo; before leaving hospital; reaching Glasshouse (Medicare); GPO/Westin before catching bus; Daily Planet before catching bus. I hope those tablets help.]

* formerly Ernst & Young; might be Pavilion now. It looks like Clark Kent works there, though I don't think it's been used in any of the Superman movies they've filmed here.

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Friday, October 02, 2009
Yes, the world does revolve around me (Nero)

Nero Claudius Caesar Augustus Germanicus aka Nero Claudius Caesar Drusus Germanicus, born Lucius Domitius Ahenobarbus, only son of Agrippina the Younger, sister of emperor Caligula and daughter of Germanicus, who was grandson to Augustus's wife, Livia, on one side and to Mark Antony and Octavia on the other. Right in the most prominent aristocratic circles of Imperial Rome.

When Caligula and his family were murdered, Claudius became emperor. After executing his third wife, Messalina, he married Agrippina and adopted the 13-year-old Lucius, renaming him Nero Claudius Caesar Drusus. Claudius only survived a few years, and Nero became emperor at 16, the youngest emperor up to that time.

Nero ruled over "interesting times" from AD 54–68 AD. Although generally popular with the lower Roman classes for a number of measures, including laws favouring them, putting down the Britannic Revolt of 60–61 AD, public aid after the fire of 64AD, and cracking down on terrorist-type groups like 'Chresters', he consolidated much power (and wealth) to the emperor through show trials and arbitrary executions of the upper classes and wealthy 'new men', and slowly usurped most of the authority of the Senate, losing him support in the upper classes.

After Nero's suicide in 68, there was a widespread belief (the Nero Redivivus Legend) especially in the eastern provinces, that he was not dead and somehow would return, like Arthur, the Once and Future King, and others over the centuries. Over the next twenty years at least three Nero imposters emerged leading rebellions. The legend lasted as a popular belief for centuries. He was reviled by Christian writers, however, because of his persecution of the 'Chrestians'.

Nero's rotating dining room uncovered (SMH Pictures? Not a sausage.)

Nero's rotating banquet hall unveiled in Rome (Yahoo, slideshow + video)
news.yahoo.com/ s/ ap/ 20090929/ ap_on_re_eu/ eu_italy_nero_s_dining_room
MARTA FALCONI, Associated Press Writer – Tue Sep 29

Yahoo! links disappear quickly, so here are a selection of others with pictures, videos & background information.

Nero's rotating banquet hall unveiled in Rome (NPR. pix with captions + map)
www.npr.org/ templates/ story/ story.php?storyId=113302798

VIDEO: Emperor Nero's Rotating Dining Room Unearthed (Post Chronicle. a video report and images of the ancient dining area)
www.postchronicle.com/ news/ strange/ article_212259312.shtml

NERO`S ROTATING DINING ROOM FOUND (Italy Online in English, only 1 picture, but more history and background)
www.lifeinitaly.com/ node/ 7955

And a typical Daily Mail treatment (their headline for the new hominid fossil discovery, 'Ardi', is "First ape woman suggests human ancestors may have started walking in pursuit of sex"), slavering at length over Nero's reported sex-and-sadism excesses before concluding with "We can only hope that this time it is not the setting for such unbridled horrors".
Wine, women and slaughter: The truth behind Emperor Nero's pleasure palace
(www.dailymail.co.uk/ news/ article-1217587/ Wine-women-slaughter-The-truth-Emperor-Neros-pleasure-palace.html)

Another Roman excavation - an old port near Rome with some surprising features
Face in the sand: British team unearths Roman amphitheatre at ancient port
(www.dailymail.co.uk/ sciencetech/ article-1217353/ Face-sand-Roman-amphitheatre-unearthed-ancient-port.html

Y'know despite their relentless "UK! UK! UK!, Oi! Oi! Oi!" and tabloid sex, violence & sentiment slant, the Daily Mail at least seems to cover a fair bit of science with reasonable length & depth. By comparison with what I see in Australia & the glimpses of popular press in the USA I get, anyway.

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Sunday, September 27, 2009
Exciting Picture News

Wheeeee!! Not only am I getting an acknowledged* publication (small, down the back) of that photograph from the previous post (informally titled Dust Day Laundry) in a Quick & Dirty, but pretty, MagCloud occasional issue of pix from the Great Sydney Dust Day called Strange Light: Photos from the Great Australian Dust Storm (very entrepreneurial of Mr Powazek), but made my very first public photo sale! (Through my CafePress store) Haven't seen pic on paper yet, I do hope it prints up OK. There's $US0.50 somewhere in that system that's mine, mine!, mine!!, allllll mine!!! Ha ha ha ha ha ha ha!!
(OK. <quick sigh> Actually, it's ~80% mine after tax, but the full 50c has, like, total personal gloating rights, heh.)

I'm wondering if this might be one example of The Future of Publishing — The post next to that one on Derek Powazek's blog is entitled: How to Publish a Magazine in a Day and a Half. OTOH, it's pretty much a modern version of those early broadsheets about notable events, e.g. a celebrity hanging. On the gripping hand, there are discussable differences as well as similarities.

* Me, bitter about unacknowledged use of my stuff over the years? Certainly.

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Saturday, September 26, 2009
Dust Day (23rd September, 2009) in Sydney; Stroke cont.

I raced up & took some photos from my flats' roof, trying to match some of the views I've taken on clear days, plus a few more that I thought looked good. It did have this strange effect — the feeling that "either there's so much stuff in the air it can't get into my lungs, or there's something missing from what is getting in" on my ventures out
that kept them brief.

Here's the link to my Flickr set of the Dust Day photographs.
www.flickr.com/ photos/ sketchesbymez/ sets/ 72157622437316334

One of the pictures has become quite popular, which is pleasing and terrifying in equal measure. (In this Flickr Gallery by Tom Coates, and two ABC slideshows) I've had trouble with my image editor, so didn't put a watermark on any before I uploaded, which means it doesn't always have attribution (snarl). This has spurred me to getting a dedicated little watermarking program. It's like backing up data; so many people don't really get it working until they've had that first really bad experience.

Dustday Laundry

There are a lot of other pictures and descriptions online. The Terrorgraph had a whole multipage supplement about it the next day.

Adelaide is *seething*, 'cos they've been getting days like this for years and haven't had nearly so much attention <sound of
sulking>, and Melburnians are pulling out their memories of the spectacular cloud that hit them back in February 1983, a week before the Ash Wednesday Fires — see Australian Bureau of Statistics (www.abs.gov.au) on Natural Disasters.

Health Update: Friend's Stroke
He is definitely improving, but until they put in a different tracheotomy setup, still can't talk. He can write, but poorly, and is exercising his working right side. I assume there's some physiotherapy for the leg & arm he can't move voluntarily. They've been able to put him into a sort of super-armchair on wheels (Regency Care Chair) so he can go out into the lounge near the lifts to get a change of scene, look out the windows (the ward ones face blank wall) & have 'private' talks. He still gets frustrated & depressed, understandably; as do I, & his other friends.

History Tour Links
Last weekend, a friend helped me get through an ABC-linked history walking tour. This is the photo album on the 702 ABC Sydney Facebook account (702 ABC Sydney) [open, public, you don't have to sign in or be registered on FaceBook], called Slurry Hills and Razorhurst History Walk; also a note on their blog. Good, but laid me up for 2-3 days — mostly recovering Just In Time for Dust Day, which affected my breathing rather more than I expected. Most of the time not having my full lung capacity isn't that noticeable.

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Sunday, September 20, 2009
Another Stroke

The youngest and last of my mother's brothers & sisters died suddenly this week. If my calculations are right, he would have been the same age father was when he died, but it sounds like he was spared the slow, suffering, decline in hospital. Of course his family are devastated. This leaves only one aunt on my father's side alive of my parents' generation.

Not much to add when it comes to either chemotherapy or my friend. The 3-day test for the new specialist was a bit of a trial, physically. I did use part of it to help get in training for today's big expedition — a 2-hour history tour of the crime haunts of Surry Hills and Darlinghurst, specially dealing with the notorious Kate Leigh and Tilly Devine. (Here's a link to some photos of the tour on Facebook, taken by the local ABC person along on it.) Pretty well washed out by chemotherapy and tests, so I was worried if I'd make it through, but with a bit of luck and care, and leaning on another friend, we got through without too much trauma.

Slow progress with friend's stroke. One of our big helpers, a childhood friend of his, was away for a week. I was first knocked about by Uncle's death, then the chemo and other stuff. Next week his partner will have to go back to at least part-time work. She wants to make up time now so she'll have hours up her sleeve when she's needed later during his rehabilitation. He was understandably pretty down at heart.

But I'm told they were able to take him out in the chair to the 'lounge area'. At least you can look out the windows (ward windows look out on a blank wall) and get away from 24-hour presence of the other patients.

Plodding on. More slow steps for us both.

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Friday, September 11, 2009
Rolling on in Earth's diurnal course: Chemotherapy; Friend's stroke

Health Update:
My chemotherapy continues; unpleasant but not very horrible, so far surviving. Around the peak of immune suppression was keeping kitchen and bathroom stuff and hands rather neurotically clean, away from crowds and other people. Using drugs to suppress some of nausea, diarrhoea — able to go to opera (Graeme Murphy production of Aida) — but very tired. Drinking lots of fluids (soup + water, juices, milk), as recommended to counteract effect of cytotoxin on kidneys means I have to keep back & forwarding to toilet a lot.

Friend with stroke, 4 weeks on is conscious! He has fair movement and strength on one side, very little on the other. Still tracheostomy and nasogastric feeding, because his swallowing isn't good, but breathing by himself (yay!). Is doing exercises, or at least practising movements of his limbs, head and throat. He seems frustrated at being unable to speak & tiring easily. Both understandable.
I feel helpless & inadequate. Am hoping to be
  • a) healthier later;
  • b) able to help with further rehabilitation.
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    Saturday, August 29, 2009
    Friend's Stroke: fortnight report

    Two weeks on, he's half-opened one, then both, eyes, and shown some more responses. Still has a nasogastric feed tube, lots less IV stuff though. Breathing 'spontaeously', if through tubes into a tracheostomy, means they will soon move him out of Intensive Care so the machines he's not needing can be used by someone in direr need.

    So, progress! Small and slow, but some. We push for more.
    Thanks for all and any who've wished him well.

    For my birrhday we took in some cake & other goodies, had a couple of bits ourselves, then sliced up the rest and scattered it around for the nurses and relatives in the Unit. Felt good to share; they've a hard job.

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    Thursday, August 27, 2009
    Friend's Stroke: flickers of hope

    Yesterday evening A half-opened his eye on the non-stroke side! I was there.

    I wasn't up to getting out today, but it's reported that he opened *both* eyes and seems to be somewhat aware and responsive.

    I've followed other young people's slow, difficult recoveries in my online acquaintances, so this gives me hope, though also a dread of how hard it will be. (Different to mother's series of strokes, getting worse & worse. Also seen in other older people.) But there are examples of lack of recovery too.

    Thinking/hoping this intensive care is Medicare-covered. Further treatment and rehabilitation, dunno.


    Tuesday, August 25, 2009
    Metastasis: Chemotherapy 2009, first cycle

    First Carboplatin treatment this morning. Tired beforehand, so I slept through some of the infusion, though the form-filling kept me awake more than I wanted.

    After it finished, I went up to the Intensive Care Unit to see if I could visit A in the half hour before they close to visitors 1 - 3 pm, but they were busy with him. It may have been doing or preparing for his tracheotomy.

    Most times I've found it takes some while for the unpleasant effects of the cytotoxic drug(s) to start being felt — it might also be the drugs they give you at the time — so I used the energy and being out already to get supplies, put money in bank, etc. Weather nice, so I planned to take my book and maybe some drink or food and sit with the cats, but time and energy ran out. Slept, then went to visit A in the evening.

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    Monday, August 24, 2009
    Friend's Stroke: waiting, hoping, fearing

    Eight or nine days now since friend A. had cerebral haemmorrhage (on right, don't know details). Aneurism evacuated, tube now on left to relieve pressure by draining fluid. He's some spontaneous breathing & body movements, but no eye reaction yet. They're balancing morphia and hypertension. We talk and touch and massage him, but I just don't know what the odds are.

    He's only in his mid-forties and so much potential still for him to achieve more excellent things. And I'm just re-starting chemo, so desperately hoping I'll be well enough to spend the hours with him I am now.

    I'm so afraid we'll be making some kind of “end-of-life” decision about him (please let it not be, please no, please).

    So asking for some good vibrations thisaway, if you have ones to spare. I'll be in and out, depending on sleep and other obligations.

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    Tuesday, August 18, 2009
    Friend's Stroke: shock, horror, confusion

    A very good friend is ill. For years he's known of and been treated for idiopathic hypertension. Seems to run in the family. Sometimes crazily high BP; rather drug-resistant, despite a good diet and definitely not being overweight. So over time many, many tests looking for causes, trying different drugs. It looked under control with diet, exercise, drugs. All either free, or at least affordable, with Australian Medicare and PBS (Pharmaceutical Benefit Scheme). Dentistry a different story.

    He's been nagging me to get off my tail and go off to enjoy myself because of my probable future bouts of cancer, and was angry that I hadn't managed anything during the recently-ended remission. So I did head off for a weekend to Canberra (details posted separately), got off the train on Monday afternoon and found his partner, another friend, waiting on Central Station Concourse.

    On the weekend a blood vessel burst in his head. Ambulance straight to our local, excellent, hospital. Tests, scans, operation, ICU, 'nother operation adding 'nother head-tube, ICU, re-scans; 2 visitors at a time. He's still unconscious/under sedation. The medistaff are helpful, kind and fairly communicative. I'm trying to give whatever practical support his partner may need (food, laundry, music he or she might like, books for waiting time, ** any aid suggestions welcome **) and taking spells at bedside.

    It's fearful and deeply saddening to see him half-head-shaved, tangled in an ugly reticulation of lines and arcane wires and tape and tubes. Fearful for his easy physicality and fierce intelligence; fearful remembering despair and depression that came with my own pain, weakness and struggles with disabilities in my own illnesses. But, thank Whitlam & Co., all Labor governments, and continuing general Australian public opinion, we don't fear financial disaster too, nor being thrown out/unplugged for non-payment. Thinking of that because I'd been following & commenting a little in the debate in the USA on the problems in their health care, particularly the insurance & payment arrangements.

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    Monday, August 03, 2009
    A Birthday Sonnet (Even Keats made this thought seem a little whiny)

    : "If I should die some night and never see
    Dawn's light, my email, and my morning tea,
    I face the thought with equanimity,
    In fact, it would be worse for you than me.
    Not that I want to die and turn to clay.
    I'm only half-way through, I want to stay,
    I want more years, more books, more chance to say
    I love my life, my work, my friends, my day.
    But I would know for sure the mystery
    Perhaps go on to live again and grow
    But even if there's nothing, I would know.
    My death I view with calm philosophy
    It's other people's death that makes me rage
    Weep, grieve, and curse, demand another page."
    Jo Walton (papersky: BlueJo)

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    Saturday, July 04, 2009
    American Poem

    I AM the people—the mob—the crowd—the mass.

    Do you know that all the great work of this world is
    done through me?
    I am the workingman, the inventor, the maker of the
    world’s food & clothes.
    I am the audience that witnesses history. The Napoleons
    come from me & the Lincolns. They die. &
    then I send forth more Napoleons & Lincolns.

    I am the seed ground. I am a prairie that will stand
    for much plowing. Terrible storms pass over me.
    I forget. The best of me is sucked out & wasted.
    I forget. Everything but Death comes to me &
    makes me work & give up what I have. & I forget.
    Sometimes I growl, shake myself & spatter a few red
    drops for history to remember. Then — I forget.

    When I, the people, learn to remember, when I, the People
    use the lessons of yesterday & no longer forget
    who robbed me last year, who played me for
    a fool — then there will be no speaker in all the world
    say the name: “The People”, with any fleck of a
    sneer in his voice or any far off smile of derision.

    The mob—The crowd—The mass—will arrive then.
    — Carl Sandburg

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    This comes under "We Told You So"
    Women stretched to snapping point
    Adele Horin
    July 4, 2009
    The 1.5-earner family became the predominant form between 1997 and 2006, from 35 per cent of all couples with children under five to 46 per cent. But life for parents grew harder and less equal. By 2006, all parents were more likely to report feeling stressed

    "There was reduced gender equity and strikingly increased reported time pressure," the study found. Based on 772 families in 1997 and 652 families in 2006, and using Australian Bureau of Statistics data, the research will be presented at the Australian Social Policy Conference next week.

    It shows part-time working mothers put in as many hours overall as full-time working mothers - when paid work, housework and child care were tallied - and worked longer than their 1997 counterparts.

    The Howard government promoted the 1.5-earner model with family tax policies that provided most benefits to single-earner families and to couples with an 80:20 income split.

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     / . Lives in Australia/New South Wales/Sydney, speaks English. Eye color is hazel. I am what my mother calls unique. My interests are photography, reading, natural history/land use, town planning, sustainability.

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    Australia, New South Wales, Sydney, English, photography, reading, natural history, land use, town planning, sustainability.