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

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

[permalink][comment] - posted by Mez @ 11/08/2009 09:14:00 pm

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.

Labels: friends, medical, medicine, personal, treatment

[permalink][comment] - posted by Mez @ 10/14/2009 03:31:00 pm

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

[permalink][comment] - posted by Mez @ 10/07/2009 08:24:00 pm

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

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