Hello Cruel World
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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 / . 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.