Hello Cruel World
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.)
Labels: Australia, climate, quotidian, Sydney, weather
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
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.
Labels: cancer, chemotherapy, food, medical, personal, quotidian, treatment
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.
Labels: cancer, chemotherapy, medical, quotidian, transport, treatment
Friday, September 05, 2008
I'm Ba-ack
Spent a month in the hospice attached to the hospital, getting to walk and use my hands again. Among other things, this meant no internet connection. Even when I got back to the flat, due to a stuff-up with assorted phone companies, my home phone had been disconnected. It took quite a bit of work to get it reconnected.
Took some photos, including ones of the Ward Cats. May try and fill in some details of my stay as I have time and energy.
Flickr Photo Set: Hospice, August 2008
Labels: medical, pix, quotidian
Wednesday, July 23, 2008
Aarrgh
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.
Labels: medical, quotidian, wyd
Thursday, July 17, 2008
Urgh
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.
Labels: medical, quotidian, wyd
Sunday, July 13, 2008
Bleh
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.
Labels: home, medical, quotidian, society
Saturday, March 01, 2008
Sydney Mardi Gras
Thirtieth Anniversay. Paranoid about immune suppression, as well as very tired and weak, so just had a quiet time. Very early on took some photos of crowd, caught a distant glimpse of the march, went & sat in pizza parlour to rest, home, then watched the aftermath from the roof; crowds moving up & down my street, and sitting in the local cafes. Not a night anyone living here can sleep early, far too much noise: whistles, cheers, fireworks – 'Nessun Dorma'.
Labels: anniversaries, celebrations, quotidian
Sunday, February 24, 2008
The Day After
Wiped flat physically, and probably mentally. In the morning I managed a tiny bit of tidying and cleaning ready for the "compacks" lady tomorrow. Got through the rest of the day without collapsing and kept temperature under control, unlike after previous chemotherapy dose. Friends came over in the evening (I barely held on to consciousness waiting) and buzzcut the last of my hair off. I dunno about this whole "what doesn't kill me makes me stronger" idea, though.
Labels: quotidian
Wednesday, February 20, 2008
More excitement still
Spent quiet several hours sitting around while workman came in to do repairs on kitchen & balcony walls & ceiling. Innocently thought this was good. After he left, friend arrived and we went downstairs to do some shopping. There was a letter in my mailbox.
It was an eviction notice. I have until just before Anzac Day (~60 days).
Just what I need now.
Labels: quotidian
Tuesday, February 19, 2008
Still Not Dead Yet
OK. Back home after nearly 3 weeks in hospital. Sick, tired, PTSD from some procedures and experiences. Will try to fill in on what's happened as I'm able.
Good to have my interconnectivity restored.
Friday, January 25, 2008
New Chemotherapy Regime: Cycle 1; Day 1
A full day. The implanted port was 'undressed' and used to inject the different drugs, including not just the cytotoxic therapeutic ones, but the ones used to combat the side effects, like anti-nausea drugs, anti-allergy ones for the taxol, which can affect some people badly, and a final dose of heparin to 'lock' the catheter and help stop blood clotting in it.
Attended at 9am, as the appointment said, but wasn't called until after 10am. With getting the dressing off the newly implanted injection port and putting in the anti-nausea drugs first, it took some while again to start the three-hour infusion of the first chemotherapeutic drug, then it was flushed for a while with saline. They may have injected something to prepare for the next drug into that.
I'd already taken an anti-histamine tablet in the morning before getting to the hospital, as well as some other drugs to counteract nausea and diarrhoea, so I'm unsure about that. They were keeping me busy with filling out forms, reading through and discussing information about possible side-effects and what to do about them, arranging for the physiotherapist to look at my arm when I come back next Friday, arranging for the stitches aound the port to be removed next Friday, discussing my support at home, etc, etc. They also supplied me with a cup of tea, cheese and cracker biscuits, and later at lunchtime orange juice and a sandwich. A couple of times I needed to unplug the pump and put it onto battery power, wheel it with all its attached dripbags and tubing, carefully held so it didn't tangle or get caught up or drag across the floor, down the ward and into the toilet. You're getting a fair amount of fluid put directly into your system through all this. The old lady in the next chair was nervous about that, and had to wait for one of the nurses or assistants to help her with all the equipment. That's one good thing I get from all the time I spent in hospital or the accident & emergency department, or chemotherapy before.
Then they infused the taxol drug for an hour and flushed it through with saline again, and finally detached all the tubing and suchlike except for a final short section of tube with a tap-end to attach to a syringe. They used this to infuse a batch of heparin solution to stop blood clotting in the catheter, and finally removed the needle in the port and bandaged it lightly. By this time it was well after 4pm.
Tuesday, January 22, 2008
Port Implantation Day
Under local anaesthetic only, in the 5th Level Day Procedure area. Quite an experience. Will have to write in more detail when I feel up to it.
Tuesday, January 15, 2008
More Stabs in the Back (Lung Drained Again)
Not the sort of experience one approaches with joy, even though you may be hoping that the procedure wiil help you feel quite a bit better. It would also be nice if they only needed one go. Both times now they've needed two stabs to get it right. Alarmingly, this time instead of a light straw-coloured fluid, it was a reddish, bloodstained colour. They also managed to get out quite a bit more fluid this time, for one reason or another. Again, although it did considerably help with my breathing, because of the collapsed lung structure, I'm still fairly short of breath.
Saturday, December 29, 2007
Mediproblems continued: Not Good News (Metastisis)
Thursday after Christmas I went into the Oncology Clinic to get the results of the tests, including the examination of the fluid drained from my lung. They found cancer cells in the fluid. In the chest & abdomen CT scan they could see some substantial infiltration of my liver with abnormal cells, as well as the fluid-filled lung and its collapsed structure.
It's the breast cancer from 2006 metastized, I'll be starting up chemotherapy in a few weeks. This time, after the trouble with my veins collapsing — remember because of the surgery affecting my arm on the mastectomy side, which has now given rise to lymphoedema, they can only use the other arm for injections, taking blood, or even testing blood pressure — they will be implanting an injectable port in my chest. Again because of the disruption on the operated side, it'll be on the right side, which is the side the lung is filling up.
Sunday, December 23, 2007
continued: Not Good News (Lung Drainage)
So after being faffed around on Monday, I was able to get an appointment at the Oncology Unit on Tuesday (1 week before Christmas) when I was supposed to be at work. Another bunch of blood tests, the doctor (registrar under the consultant) tried to get an appointment to get the fluid in my lung drained. Originally arranged for Wednesday, which meant I could be there for the last day of work before we broke up for the Christmas-New Year break, by the afternoon of Tuesday it was postponed to Thursday morning. So I was able to go into work on the Wednesday, finish off a bit of work, distribute the goodies I'd put together, and collect some myself.
Bright and early on Thursday, presented my poor tender, breathless body for some help. They used ultrasound to visualize the inside while I sat sideways hooked over a chairback with my arm up on my opposite shoulder, then took a couple of stabs to get the bit they wanted. The first go made me feel quite sick, as well as feeling quite unpleasant (They'd applied local anaesthetic as well as antiseptic to the skin, so all the sensation was internal.) The second try, they also gave me oxygen to breathe. Whether it was that or because they were hitting a different set of nerves, although there was a very uncomfortable, deep sort of achey sensation (almost like joint pain or bone ache), I wasn't nauseated. They took a sample of the fluid for testing.
So I was hooked up to a plastic tube that drained into a cute little plastic receptacle with measurements marked on it, and a handle to carry around. They put me in a wheelchair with it & the oxygen cylinder, and we went up from the basement to the chemotherapy ward of happy memory
After a little while it was back down to get another chest x-ray to see how well it had worked. Unluckily, the lung was still partially collapsed. On the plus side, I could breathe rather easier, if not normally. On the minus side, especially once the anaesthetic wore off, the stab wounds, internally as well as externally, hurt, and more when I coughed, and there was an irritation that made me cough a fair bit. Then it was a week to wait, including Christmas, for my next appointment to get the test results and see how the lung & I got on.
Monday, December 17, 2007
Catch-up on recent medical news
Arrgh! More mediproblems. Quick catch-up. Possibly lack of posting has something to do with the tiredness & lack of energy. After the exploratory operation at the end of November to check on a different problem, my breathlessness was getting worse, despite keeping up gym attendance.
Finally got to a doctor. My (new) GP sent me off for a bunch of tests, because it could be any of several different causes. [Leaving out a whole recital of a pretty miserable day severely summarised below, might vent nearby later.] The first was a chest X-ray. After I finally found the place, the radiologist came out to talk, was worried about how I'd get home/wherever, and wanted me to take the X-ray straight back to the Medical Centre for the GP. Got back to Medical Centre, left X-ray, went to get blood taken for other tests near home [Big part of misery.] and grabbed groceries on the way home. [Free bread! Another story for later.] Got home to rest before heading to city to get Christmas needs and Medical Centre phoned to make appointment for later in the day, instead of original Monday appointment.
[Taxi problem! Part of 'venting' story.] Doctor seemed worried by the fluid on my lungs, wanted me to go back to one of my cancer units, possibly on Saturday. I said if possible could it wait 'til Monday (), and she said OK, but be prepared to go to Emergency if I started to have trouble breathing. I had to phone around my Tuesday night support group to tell them I might not be in if hospital keeps me.
Well, have survived weekend [Good story with friends, and watched 'Idiocracy' with two of them.] Getting ready to go to Oncology today. Packing bag to allow for possible overnight or longer stay, just in case.
This is my blogchalk:
Australia, New South Wales, Sydney, English, photography, reading, natural history, land use, town planning, sustainability.



