Hello Cruel World

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.)

Labels: cancer, medical, medicine, quotidian, stroke, thoughts, treatment, words

[permalink][comment] - posted by Mez @ 11/13/2009 04:41:00 pm

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.

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.

Labels: friends, medical, photos, stroke, Sydney, weather

[permalink][comment] - posted by Mez @ 9/26/2009 10:24:00 am

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.

Labels: cancer, chemotherapy, family, friends, medical, mourning, stroke, treatment

[permalink][comment] - posted by Mez @ 9/20/2009 10:32:00 pm

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.

Labels: cancer, chemotherapy, friends, medical, stroke, treatment

[permalink][comment] - posted by Mez @ 9/11/2009 09:13:00 pm

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.

Labels: anniversaries, friends, medical, stroke

[permalink][comment] - posted by Mez @ 8/29/2009 11:30:00 pm

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.

Labels: cancer, friends, medical, stroke, treatment

[permalink][comment] - posted by Mez @ 8/25/2009 09:09:00 pm

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.

Labels: friends, medical, stroke

[permalink][comment] - posted by Mez @ 8/24/2009 01:36:00 am

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.

Labels: friends, medical, stroke, travel

[permalink][comment] - posted by Mez @ 8/18/2009 03:51:00 pm

This is my blogchalk:
Australia, New South Wales, Sydney, English, photography, reading, natural history, land use, town planning, sustainability.