Hello Cruel World
Wednesday, July 23, 2008

Not good news. I went downhill physically quite a bit last week. By the end of the week I virtually couldn't walk.

Because of the raw tender skin flaking & peeling on my feet (as well as hands), these horrible 2"–3" blisters have spread over the sole of my right foot. I've borrowed a walking frame from the hospital so I can hobble to the bathroom & kitchen, but it can take minutes to get the 20-odd feet, and is exhausting. Crawling is useful, faster, but can be wearing. Home help people & friends have been bringing food & supplies, taking laundry upstairs & retrieving it, preparing some dishes so I can just hobble over, grab, maybe heat them, & eat to keep up my strength. The doctor moved my tests to next week; I'll still need to be picked up, dropped back & wheelchaired thru the hospital but *hope* to be able to get down & up the 57 steps home somehow, possibly.

Have 'funny' story about friends & me & WYD. Will tell later when hands better. Do have this map from our driver outlining our second, more successful attempt to get me home.

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Thursday, July 17, 2008

Haven't been able to do much of anything at all in the last week. Really badly affected. I've tried to at least get up & out of the flat — up on the roof is only 2 flights of steps, not 6 down to the ground — but just a walk down, across the road & 30-50 metres along to shop for milk/bread/etc, then back will leave me exhausted, sleeping for a couple of hours & with nasty pains in my feet. I'm trying to type mostly with my fingernails rather than fingertips, but anything one does with one's fingers normally — doing buttons or zips, handling cutlery, dialing a phone, using keys, etc, etc — hurts.

I'm hoping lots of rest, good food, vitamins, etc, will help. Think the World Youth Day 'pilgrims' will be walking past me on Saturday & Sunday, am considering whether to sit/stand on my front steps singing either or both versions of Boom de Yada (aka Boom De Ah Dah), & maybe Vatican Rag, or just wearing my Central Location T-shirt.

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Sunday, July 13, 2008

I'm in the third cycle of the Xeloda treatment — the one they changed to when the tests showed the first treatment protocol they tried wasn't working. Next week, at the end of this cycle they'll do another round of tests to see if this one has been doing better. I've been mostly able to control the nausea/diarrhoea, and it's nice to be getting hair back (except for the hair that's less popular, like the sub-prime moustache & beard).

The Hand-Foot Syndrome, though, makes life quite difficult and painful. Walking becomes not just tiring, but actually hurts — I'm reminded of the Little Mermaid — and doing all those little necessary, almost unnoticed stuff, like un/doing buttons or zips, turning keys, opening screw and non-screw lids of all kinds, using cutlery, even just writing, hurts and is awkward. White cotton gloves help somewhat, and being winter I can wear other gloves outside without looking too weird, which helps 'explain' my difficulty with getting coins out or picking up change.

What worries me is that if this is holding the cancer from expanding, but not shrinking it back, this drug is one they can keep you on long-term. I would hate to have to keep dealing with these symptoms for many months, or even some years. OTOH, it could be worse. We will see what we will see. Am hoping, unlike before, that cancer isn't advancing. At any time getting up the 57 steps can be a real chore, but it's worrying how just in the last week, following Don Giovanni, almost any walking has been exhausting & very painful.

Again, I'm so glad for the Australian medical system. These tablets are $700 a packet (about a cycle's worth), but I'm paying ~$30. I got a statement from MBF showing the thousands they've paid out in the last year (admittedly having paid them w/o claiming for decades). Plus there's the weekly home help. Recently Thomas M Disch, the American writer, poet & critic, committed suicide partly because he'd been bankrupted by the terminal illness of his partner and was being hounded out of his rent-controlled flat (also discussed at nielsenhayden.com/ makinglight/ archives/ 010413.html as well as elsewhere on teh Intartubes).

I've been continuing work at home, and got an injection of new leave to juggle at the anniversary.. I went in on the afternoon of my anniversary, after my earlier doctor's appointment, but was feeling quite sick, so I didn't go around to see different people. Luckily they didn't have anything arranged.

Am coping with the new flat, tho' it still has problems. I need to keep at the Strata Management people to get the leaking roof fixed, for instance. There's still things packed up in boxes, maybe 'cos I'm thingy about having to do it to move out, possibly in September when the lease expires. We've had a few problems with the flat nearby being renovated with sledgehammers and small jackhammers. Especially when they left the door open and cement dust got everywhere.

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Tuesday, July 01, 2008
PZ Myers: Darwin Year begins now

Pharyngula The Darwin year begins…NOW!:
It was on 1 July 1858, 150 years ago today, that the idea of natural selection was first presented to the public in a joint reading of Darwin's and Wallace's papers at the Linnean Society of London
Some Darwin-related Links
    Darwin Today - a joint initiative of Research Councils UK aimed at educating the public about evolution
    The Complete Work of Charles Darwin Online; free, includes items not in public domain
    Works by Charles Darwin at Project Gutenberg; public domain
    Darwin Correspondence Project: Text and notes for most of his letters
    The Darwin Digital Library of Evolution
    On the Origin of Species by Means of Natural Selection: Free LibriVox Audiobook
    Digitized titles by Charles Darwin in Botanicus.org
    Works by or about Charles Darwin in libraries (WorldCat catalogue)
    Charles Darwin at the Open Directory Project
    Institut Charles Darwin International
    A Pictorial Biography of Charles Darwin
    Twelve different portraits of Charles Darwin, National Portrait Gallery, U.K.
    Mis-portrayal of Darwin as a Racist

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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.