status as at 24 dec 24:

Physical

... definitely dying.

Timing is uncertain... from days to months.

The cancer (GBM) has spread through my brain stem.

As it gets worse, this will kill me. Either slow me down till I stop moving

(including heart and lungs, which will be fatal), or till I fail to wake up (same fatal cause).

Typical of my cancer: slow, relaxed, painless.

The cancer in my brain stem is like fungus in a cauli.

If the surgeon tried to operate, he could just as easily kill me.

There is nothing to be done by hospital or surgery.

The only choice is, do I want to die in hospital or at home? Easy choice:-)

I am at home.

Comfortable, well-looked after

... on "palliative care".

Which means, definitely dying.

also half blind (after surgery) and half deaf, that's hereditary. 

Bloody slow, always tired, fall asleep at any time of day.

I have a wheeled walking frame for balance, it's brilliant.

I can st/roll 2 or 3 km tho it's exhausting.

... but sometimes I can't be bothered even standing up :-(

Mental: 

My brain seems to be working okay.

a nurse tested my awareness and memory, just remember this name and address, she said:

not only can I now not forget it: it's the same name and address that I was asked to remember in a similar test... several years ago.

Emotional:

I spent seven years waiting for "symptoms", no use trying any treatment until there are reasons, ie symptoms.

Only now I realise the stress that caused... waiting for the unknown.

Now I know that I am dying, with no possible treatment -- that stress is gone.

Okay, it's a funny feeling: I'm feeling fine then suddenly get a feeling of a dark shadow behind me

... the shadow of death in my brain stem :-)

Overall, tho, knowing that yes, I am definitely dying... and this is how it will happen

... is more relaxing than waiting and wondering.

There is a new IV chemo drug

... which has been developed in the seven years that I spent as simply "terminal".

The IV treatment is done every three weeks. It should slow down cancer growth. Most optimistic hope is still less than a year till I die.

Drat! eh !

I get angry and frustrated

... far too easily.

But:

anger in particular is nothing to do with cancer.

I'm trying to contact tourism public servants. They can neither read emails nor respond sensibly.

My response  to this frustration is getting nastier.

Dying of cancer is a lot easier.

Nothing I can do... so I do nothing. In great comfort :-)

Oh yes,

Christmas brings news of friends travelling, catching up with other friends.

hmmm

... I'd like to travel but... not gonna happen.

palliative care is hospital or ... home.

aargh...

time to be more positive:

wait a few months for the northern weather to improve.

make sure that I'm still alive

... if I am ... fly up and visit the farm.

possible? stupid?

worth considering.

Something to plan for.

... and more positive than just sitting here dying :-)

I try to *keep* up, rather than catch up.

and prefer emails to meetings.

half blind and half deaf make for awkward conversations.

I can't claim to be happy to be dying. But I'm happy, mostly, while waiting.

Today, for example: I'm snoozing on the couch.

Can hear the grandkids playing and shouting outside

... they are having fun

... I listen

... and I can't help but be feeling happy.

Family, eh :-)

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

not a stroke

i'm reliably informed that i've posted about the effects of a stroke.

... but not about having a stroke.

i still won't re-read. can't remember, either

... so i ask deb:

definitely not a stroke

... *not* damage to my brain.

my brain swells, presumably the right side where a bit is missing.

this swelling could have caused headaches. I could vaguely imagine a headache, 0.5 on a one to ten scale.

what the swelling did do, was to prevent control of the left side of my body. could not roll over nor lift myself up.

nope. now i cant remember. not clearly.

i do remember talk of ... chewing, swallowing, "like" a stroke. but no (new) brain damage. just swelling.

does the swelling make me tired? j thought that was due to cancer growing in my brain stem.

my 3-weekly chemo (eg today) may slow the cancer.

daily dex reduces the swelling. it is also an "upper" so should wake me up.

deb watches me to see how tired i am, sometimes i can barely keep my eyes open even when "awake".

the cancer doc suggests changes to daily dex dosages -- based on keeping me awake.  deb then feeds me more or less dex.

nope.

i have no idea what swollen brain has to do with any of this.

... dex reduces the swelling. why do i need that? no idea.

i do know that i wake and sleep at odd hours. i have always done that.

I know that my fuse is short. I am permanently angry, nothing to do with cancer.

now that i think about it:

... cancer in brain stem will kill me.

... brain is swelling for reasons of its own.

... definitely no stroke, just some similar symptoms.

... i dont remember, dont know, what is going on.

So i dont worry about it. not about the cancer, that is.

non-cancer worries are more serious.

and cause more worry

... and require more action... and wondering, what to try next.

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

drug dealer doc

a stroke messes with the side of the face and mouth.... and tongue.

some stroke victims breath food because of difficulty chewing and swallowing.

just drinking water, i take the first swallow very carefully. still choke a bit.

loss of control -- and feeling on one side of my tongue:

i find my tongue, or lip, resting on a sharp canine tongue didnt have the sensitivity to move itself.

feels like i bit my lip, tongue.

someone mentions mouth ulcers as a possible side effect of chemo. neither deb nor i can see ulcers but the bitten tongue feels... a bit sore

... and the timing could be right for an allergic reaction.

we have a phone consult with the cancer doc.

no, she says... no possible way that the chemo could cause ulcers.

... but

no possibility of mouth ulcers but

... she still names drug dosed mouthwash to treat ulcers. idiot.

deb, also a drug lover (tho not an idiot:-(, rushes out to buy the druggie mouthwash. which i shall bin asap.

meanwhile,

... i am more careful of tongue on canine.

and i rinse my mouth with cool fresh water and cooled milky tea.

problem solved.

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

time of day

ive now joined the ranks of people who need to wear (reading) glasses all day. i don't know how you stand it.

i fall asleep with a book

... btw: my official bedtime is... a few hours after i fall asleep on the couch.

anyway.

i wake a few hours later and search the couch for my glasses. which are usually somewhere underneath me. so far, not broken. no way i would dare wear glasses to bed, too much space for losing or crushing.

i dont wear a watch to bed either. too uncomfortable and, couldn't read time without glasses anyway.

If i wake up, i need to walk a long way to the nearest clock that i can read in the dark.

which leads to: when my bladder wakes me up, i may as well get out of bed.

... which is sometimes ridiculously early.

oh well, nothing else to do.

... 

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

not too bad

a visiting rellie organises a "shared food family picnic" in Kings Park.

About twenty of us sitting in shade, on rugs and chairs.

we're in a heat wave but the sea breeze is in. Very pleasant. Deb passes food as required.

.... i hope the three visiting from Scotland remembered sun screen.

I do know almost everyone.

Snatches of conversation sound interesting but I can't hear clearly. Some too far away, some mumblers right next to me.

I've been dreading the day but I sit quietly and enjoy.

Today is also our 48th wedding anniversary :-)

If we had told anyone else, it would be more notice than we  usually take of anniversaries.

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

ACP moods

the ACP nurse asks Deb if age etc has caused my moods to change.

yes, more grumpy, says deb.

i remind deb of our son who, much earlier, has pointed out that i have always been a grumpy person.

but yes,

we agree that i now get angry much faster than ever before.

deb even claims that she, too, can now get grumpy.

not as grumpy as me, though!

my day starts at 5am, with the need to write a couple of angry emails about public servants who fail to reply sensibly to non-angry email queries.

i'm also angry at an incoming email.

i spend the entire day being angry and very tired. deb drags me out shopping, which does cheer me up (and deb). then i fall asleep in the car.

the cancer doc does a phone assessment.

i leave the talking and listening to deb.

in the morning deb goes for a run in bold park.

 i walk a circuit, a couple of km... which could explain why i am tired :-)

i walk a circuit, a roughly circular course. so i may not know where i am but i know i will get back to where i started.

i stroll along the road or path edge, wave my white stick if i see or hear a car.

a young woman asks me, are you all right, sir?

i reassure her, thank her.

people really are very thoughtful and caring.

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

aged care

today we are visited by an aged care package ACP nurse.

she's good value, the government offers some good, practical, support.

first, i ask, who are you? these support people keep turning up. the hospital atititude was, you may as well sign up for every possible service...

ACP is a long questionnaire about my needs.

most of my answers are, i need nothing because deb does everything.

if deb is not available.... i call the boys or even girls. and, yes, keep my phone within reach.

Deb is now on a six-month ACP waiting list for occasional heavy gardening help. and perhaps some house-cleaning.

both very useful.

... hint to kids: both very useful for deb especially if ACP fail to provide.

she, ACP checks the house and fails to make any stupid suggestions.

although...

my walking frame is just a fraction too low for me.

ACP will arrange for a physiotherapist to measure me, see if I need a larger frame. physios are rare, i could be waiting months.

but wait... I just *told* her... this size frame *is* a bit too low/short  for me.

oh well, i'm old, what would i know.

because i'm old she asks, am I incontinent?

i'm pleased to tell her that,

having found out that my bladder is never really empty.... which caused dripping, dribbling and leaking(ie incontinence) i've learnt to really empty my bladder. problem fixed. no more need to plan outings by availability of toilets.

And my method is all documented... but ACP does not ask for documentation

... which is a bit disappointing :-)

overall... the ACP visit/evaluation is excellent value.

I'm lucky to need very little. not driving but otherwise still mobile. and already well looked after.

which does make me think: I really should get into Ubers for independent self-transport.

there is, for example, a govt minister that i would like to drop in on

... i suspect that deb would refuse to drive me there...

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

hand cramps

i sometimes wake with mild calf cramp. no worries, i can deal with it, carefully.

lately i wake with hand cramps. aching tendons. so bad, so painful i cannot hold a cup of tea. very serious :-(

i hope its not a chemo side-effect ( tho the timing fits.

meanwhIle, ive been playing a fun game, like wheres wally but looking for cute cats.

excellent practice for what i need: finding and tapping images on the screen

but whoops!

today i realise that the game is giving me RSI,

i stop playing. hand cramping stops.

so its RSI rather than chemo. and easily fixed.

and that is something to be glad about :-)

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

so sleepy!

sunday, i make a special effort to be awake when the family are here for dinner.

so much more enjoyable, for me, anyway :-)

then i sleep a solid eight hours and yet

... sleepy again the next day.

but it could be a lot worse:

a week ago i'm sleepy -- and weak.

it's a shopping day. my role is to push the trolley and follow deb. even leaning on the shopping trolley -- i feel so weak i can hardly stand up. not a pleasant experience :-(

this week im just sleepy. much better :-(

today, monday:

deb and i go to an ice cream joint. most enjoyable.

on the internet no-one can see the crayons in my nose

===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

quiet sunday

the rest of the family are busy or away, so it's just me and Deb.

Until Deb gets a last-minute "invitation" to granddaughter's birthday party.

it all goes very well.

Best I can do is sleep at home:-(

Though I do get vicarious pleasure and a slice of cake...

*now* we can relax.

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

metrO

Saturday afternoon is orienteering at Trigg

Deb does an actual course, finds all controls, enjoys herself :-)

i roll and stroll a few hundred m near the start, take it easy. chat, nod, smile, a social occasion.

organised by younger orienteers, adds fun to the atmosphere,

with music at the start :-)

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

religion?

an ABC News article says that Gen Z men are leaving religion while Gen Z women are joining. Or vice versa, I don't care either way.

the other day a friend asks me,

does my impending, very definite, death, change my mind about religion?

no. definitely not.

here's a quote from that ABC article:

  Going to places like the Golden Temple and the Taj Mahal really opened my eyes on the power of religion, 

yep. religion is all about POWER.

We could kill you now but we would rather threaten you with eternal hell and damnation.

there's an old poem which begins, The Assyrians came down like a wolf on the fold...

by the end of the poem, every assyrian is dead. plague or Dysentry, most likely.

the "winning" army claims this mass extermination as proof that god is on their side.

so their god ... a magical creature with absolute power to exterminate

... is not able -- not willing -- to build a simple wall.

nope. mass slaughter is its only answer.

there is no way that i would worship

... or even respect

... such a vicious creature.

religions begin as a simple way to reinforce power.

thou shalt not kill, fair enough.

until

... thousands of years later

... yes, thou shalt continue to kill the tribes who dared to challenge our god-backed power to kill.

btw...

there are plenty of dietary directions in religious books. a good idea, very useful for the days before soap and water.

i read one section which provides instructions on cooking meat.

mostly: all the best bits of meat will be given to the priests...

well,

i wonder which powerful priests wrote those instructions.

I just naturally resist power and coercion. Religion is all about power and coercion.Backed by vicious threats.

death does worry me.

but my only interest in an after-life is to ask Houdini,

so, why have you not come back yet?

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

say something nice

deb has a calendar of daily positive thoughts or actions.

today's is, say something nice to a stranger.

we're leaving a cafe, me pushing my walking frame.

a man next to me comments that he is looking at using a walker. His knees are going bad.

I can hear his reluctance

... the walking frame really is a sign of age and decrepitude :-(

i comment that my frame driving lesson explained that the frame is not for support

... it is entirely for balance. and that the frame is excellent for balance.

i know that I feel better being unsteady rather than... falling flat (if, for example, bad knees suddenly crumple)

... I hope my comment was reassuring :-)

.

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

Don't tell Deb

i've lived in this body more than 70 years.

Lived in, watched, studied, tried to understand.

if there's a problem, i look for a cause. Try to reverse the cause.

Deb has a different approach.

If there is a problem,

Deb reaches for drugs.

Or surgery with drugs-- which was the correct reaction for my first GBM.

Still, it makes me reluctant to admit to side-effects or symptoms.

For example:

I stay awake for many hours at night.

Yes, I'll then sleep, and be tired, during the day.

the cancer doc asks, would I like to use sleeping pills?

Deb repeats the question.

Why?!

Night time -- everyone else peacefully asleep -- is the best time to get work done. Without constant interruption.

Luckily Deb does seem to remember my years as lecturer and student.

I would work all night. then rise with the Sun and the family.

Catching up on sleep after lunch. When I could easily sleep through the noise and disturbance of family daytime activity.

Or wake up enough to join in.

Why would I want to waste the quiet night with sleeping pills?

Headaches are a bit more difficult.

my GBM is swelling my brain, headaches are expected. Dex is a relatively harmless drug which reduces swelling, therefore acts against headaches. I accept daily dex.

Also:

Remember the "old days" where women would embroider for hours by dim candlelight and get headaches. Eyestrain, it would be called.

Students would read all night and... get eyestrain.

Pain behind the eyes, headaches, tension as the brain struggled to see.

Now i see nothing to my left -- but reading still involves looking to right -- and to left.

My eyes are constantly swivelling left, right, left right

... looking to read entire lines of print.

Tiring my eyes.

Causing eye-strain.

... and, sometimes, a headache. ...Tension inside, not pain.

If it were pain -- yes, I would complain.

Was it Jonny Russo whose only symptom of GBM was debilitating headaches? 

Until it killed him.

I imagine that a debilitating headache would rate perhaps seven on a scale -- a pain scale -- of one to ten.

So I offer Deb my hedaches. I rate them at perhaps zero point five, on the one to ten scale.

Very dull tension at worst. Remember those swivelling eyes? Too much reading, too much looking for the left side of sentences.

Really, it's the best, worst, I can do.

Deb thinks, headache.

Adjusts my daily dex up or down.

Deb is happy. The cancer doc is happy.

I'm happy.

Deb and the doc deal with the drugs.

I do as I'm told.

I could probably read less.

But I do enjoy Deb managing my dex dosage.

I love the care and concern :-)

.

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

child minding

saturday, we look after the granddaughter for a few hours.

by "we" I mean, Deb.

the kid comes in. says, in surprise,

grandad is not asleep...

that's my involvement in the child-minding :-)

deb and child spend many hours in the park.

playing, so i'm told, house and shop and wipe the bird poo off the slide.

when they are home, i add (a bit) to the conversation, enjoy the company and eat whatever lunch no-one else wants. and mostly don't sleep.

one child, either, is delightful. together... they get rather noisy.

i have an enjoyable, relaxing, afternoon.

Deb -- constantly interacting and entertaining

... is totally exhausted :-)

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

healthy indicator

i tend to wake up before deb.

sometimes because i've been awake all night (dex does that) sometimes i've been reading or writing.

deb has learnt to doze on, 

i particularly enjoy fetching the morning paper.

the weather is fresh and clear, the streets are quiet,

it's just something that i can do. (now that i ignore pointless bans on going up and down stairs to get through the kitchen.

there's also the chance for a minor health check.

the paper lies on the ground. I bend, pick it up, stand straight again

... all is good.

my brain stem is being attacked by cancer. 

my brain says, stand up. the message travels from brain, through stem, to body. When the stem fails

... themessage will fail to get through. 

... my body will fail to respond, fail to straighten.

so...

I bend to pick up the paper.

...stand up straight again.

... and it works

... all good :-)

while I can pick up the paper

... the brain stem is still working.

And that is very reassuring :-)

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

peaceful, but

i fall asleep before the evening news is finished on tv.

deb stays awake long enough to remind me to take my evening drugs.

deb goes to bed, i go back to sleep for a few more hours.

it takes me a while to find my reading glasses, which fell off onto the couch while i slept.

all very relaxed.

as i understand it, my life will be more and more relaxing,

sleeping

... until one day i fail to wake up.

tonight, i do wake up. and i find my glasses.

so far, so good :-)

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

nothing happens

Deb and I have lunch at Matilda Bay Cafe.

Sunshine, river view, good food, good company :-)

And nothing happens...

It's lucky that this blog is purely for *my* benefit, or I could be embarrassed at the lack of action.

There have been months when... nothing happens. So... months with no post... that's the way it goes.

Or I may consider the occasional reader and post a quick "nothing happens" ... :-)

Until a surgeon tells me that I am finally, definitely, dying. And I post a lot of words explaining that to myself.

There is no balance to this cancerous plot... No neat balance. Only, as far as I can -- completeness and honesty.

The big excitement for today is not even new, just not yet posted: I have a ACROD sticker. So there is a slightly better choice of where to park. woohoo :-)

Dr Nick Lethbridge / Independent Dexitroboper

you cannot back into the future

===

..: notdotdeaddotyet.blogspot.com

dream confusion

i fall asleep on the sofa b4 deb goes to bed. then i wake after midnight. wake with a list of things i need to do now that im awake anyway. simple things to do, such as a couple of emails to write.

i start one email

... then realise -- 

... my list of emails was the tail end of a dream! i was still asleep.

... and then...

i may have been dreaming

... but the dream was correct: i do need to write those emails.

ok, now im awake... i hope :-)

better write those emails before i dream that i should be doing something ridiculous !

You can not Back into the Future
===

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)

===

Dr Nick Lethbridge
Consulting Dexitroboper

   

change of season

deb goes for a run and leaves me to walk alone in the park. Kings Park, this time.

last few walks have been perfect Spring days. sunny, cool, fresh and green.

today

... the season has moved on.

warm, dry. the bush and grass are dry, brown, sand showing through. very typical WA bush :-)

by the time i reach Zamia cafe i'm glad i can buy a drink.

it's almost time to complain about the heat :-)

butnot quite.

today, the weather is beautiful. and one bare km is enough to tire me out. Hey! there was some uphill :-)

half blind. half deaf. dying of cancer.
so what?

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)


http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

god's own

 Deb and I are at the shops when I'm tackled (verbally!) by a Christian. I am the way, the truth and the light, he says.

do you know who said that? he asks me.

whatever I answered was not entirely satisfactory.

It was the directly inspired word of god, the man tells me.

In god's own autobiography? I ask.

If I were to write my autobiography, I continue,

I could also claim whatever I want.

I will go to heaven, the man tells me, confidently.

You, the man continues, will suffer 

the eternal torments of hell.

I have long known my opinion of this rubbish. 

There is no way that i will worship any creature just because they threaten me with violent and eternal revenge. Quite the opposite, I am too amazed to respond.

you will never get to heaven, the Christian confidently informs me.

I won't miss you but, i hope that you enjoy your heaven.

and so we part.

I do enjoy a discussion with a man of fixed opinions.A man who is not afraid to state his beliefs.

half blind. half deaf. dying of cancer.
so what?

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)


http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

nothing but complaints

i wake with mild indigestion.

not to worry, it's mild, i essentially ignore it.

okay, it does ache just where i suspect my heart could be. possible heart attack? i doubt it, my heart is well tested.

anyway

... i'm reliably informed thar a heart attack comes with "feelings of doom". nope. i definitely dont have any such feelings.

i just have the doom !

lmao

ive been waiting hours to use (or possibly reuse) that line ;-)

what does annoy me is aching teeth...

a possible side effect of chemo?

it slows down my eating, otherwise no great problem.

i'm hoping its actually aching jaws... from sleeping with tightly clenched teeth.

ive had that, dealt with it, before.

so now i practise sleeping with relaxed jaws.

see... nothing but complaints...

and if that's the worst that i can complain about

... well

... that's  something to be glad about :-)

which is what Pollyanna would say

... in case you ever wonder :-)

half blind. half deaf. dying of cancer.
so what?

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)


http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

Early recce

I wake up from a dream inspired by old SF stories.

The dream ends with a character doing a recce into a nearby village. So I... wake up, get up and recce the front garden :-) Bring in the paper.

Beautiful, cool, Spring morning. Best time of year.

Last night's  headache is even less, perhaps one half on a scale of zero to ten.

Tired, of course, still restless, not worried.

Though I'm getting worse at tracking the days of the week. I mean, who cares?

Only in the garden I notice the bins are out, so today must be Tuesday, bin collection day.

(And swimming lesson day, good)

Ah, of course it is

... I check on my online calendar :-)

half blind. half deaf. dying of cancer.
so what?

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)


http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

Restless

I'm restless.

No clear task to be done.

No emails to be written (yet)

I'd like to read but, no book that I particularly want to read. And reading can be tiring.

 sigh...

My current instructions are:

I'm on reduced dex, half a day? Deb knows.

If I get a headache, increase the dex.

I have a headache, perhaps one on a 1 to 10 scale,

Barely enough to notice but, it exists.

A headache is not a good sign.

Also, my teeth? Gums? Ache. 

Again, mild... but it does slow down my eating.

Deb gives me an extra half dex

If symptoms persist... I'll wake Deb:-)

Meanwhile, I'm restless.

And.a bit worried;_

I have a snack, for something to do.

Back to being restless on the couch.

half blind. half deaf. dying of cancer.
so what?

http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

On the couch

I've spent hours on the couch

... too tired to move

... drifting between crossword, magazine, election plans, good memories, ... and sleeping.

Like a vegetable ... composting :-)

Some thoughts have crystallised.

It's time to document them

... then get up and go to bed!

half blind. half deaf. dying of cancer.
so what?

http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

Not... A walk in the Park

Deb needs a long run, I'm happy to sit and wait in the park :-)

We go to the same Cafe where we met friends yesterday.

Again, no close-by parking.

I can park in the same spot, deb tells me, so you can find your way between car and Cafe...

Umm

Yesterday I followed deb. But by myself...? No

I end up sitting in the sun at our very familiar usual parking spot.

Too far to walk for coffee but... I know exactly where I am. Very reassuring :-)

So I guess I still have ... navigational ... challenges and doubts :-)

Deb runs for 40 minutes or so.

I sit.

A relaxing morning.... for me :-)

half blind. half deaf. dying of cancer.
so what?

http://my3rs.blogspot.com/

Dr Nick Lethbridge
Consulting Dexitroboper

   

Phew!

Deb and I go out to what extends into a long lunch, catching up with friends. Very enjoyable.

Deb returns home to finish cleaning the house.

I return home to

... snooze :-)

Phew !

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

hemp again

I've decided that I may as well run for parliament, again.

HEMP is now LCA, Legalise Cannabis Australia.

My support is still based on... freedom of choice... and I definitely choose, No.

But why now?

The key contender in churchlands, my electorate, is zempilas.

Aside from his backing by the big WA media conglomerate...

I figure I can compare myself favourably.

Anyway, his party are clowns,  fighting over party leadership...in a party of two:-)

To LCA I explain that I am now past the uncertain possibility that I could suddenly be rushed off to hospital heh :-)

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

Breaking into bureaucracy

There are a few things I'm trying to get done, or started. 

They all seem to start with me sending emails then... of course... getting no response.

A lot of the problem is that I work when I like. Other people stop for nights, weekends and such. So the rest of the world seems to creep by... so very slowly.  I try to be patient :-)

Today I try phone calls. All very polite, definitely subtle.

Eg for government agencies:

Okay, I'll give it a few more days then call back.

Or, you're in such and such a ministry? I don't want to disturb the wrong minister with a complaint...

I suspect (hope) that I will at least break past the first walls of defence against ideas from out of the unknown.

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

But what about?

I wake suddenly at 2 am and realise... I have missed an entire area of planning (for the short future)

What about Deb?

Practical matters are fine. Deb, and the boys, are more than capable.

What of deb's mood?

I tell her to be upset but not too worried, I won't be worried.

But she can't use the line, now he's someone else's problem, I've already used that on a recent widow.

What does feel... just right... is:

Deb wakes up one morning, I don't.

So Deb goes out and, too late for me to hear

... plays some loud Meatloaf and/or Queen.

Then we decide that deb will do

... whatever she likes, I won't be worried.

So that is that, sorted :-)

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

Tiring Tuesday:-)

Start Tuesday with a 2km stroll with the ghost who Walkers... phew! Surprisingly tiring

Sometime during the day my shingles scabs? Decided to ooze yuk :-(

Nothing serious but needed to put on a clean, dry shirt.

Take grandson to after school swimming, lesson then play with plenty of, what am I, challenges... getting tricky as he gets older.

We drop him home, to a noisy welcome from his sister

We tiptoe away, drive home... to the peace and quiet of just two of us.

Tuesday is always tiring -- but great fun.

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

IV and more

Another IV of beelzebub today. Chemo to possibly ... slow down... tumour growth.

It strikes me that... if I remember correctly...

When I was first diagnosed with terminal GBM4 ... monoclonal antibody chemo was almost a dream, a dream of a future possibility.

Now it's an easy part of my treatment.

I live, still, in fortunate times.

Today's treatment was short, just 20 minutes.

Except

... first they needed a urine sample.

If only they had mentioned this before I had cleared my bladder for extended lying down for chemo. Sigh

Still, waiting for that dehydrated Frenchman-- pee-air bah boom!

Meant that I scored some sandwiches while waiting :-)

And that's something to be glad about :-)

===

Today is 11th November.

I always try for a minute's silence at 11am.

Not that I know anyone at all who has died in any war.

Just a generic gratitude and orrow and remembrance.

Today I remembered Cassie.

A recent, sad, miserable story.

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

better mood

fifty finalists for the short story competition are announced. Guess what? I'm not one.

But...

Last year I read a few winners, thought, what a load of rubbish.

This year I read one, think, that's a good story, I look at other titles, think, hey, I'm going to enjoy reading those.

Seems clear that -- this year -- I am in a far better mood than I was this time last year :-)

Dr Nick Lethbridge / Independent Dexitroboper

half blind, half deaf, dying of cancer,

So what.

===

..: notdotdeaddotyet.blogspot.com

Emotional baggage

A couple of... emotions... to cover.

Not sure where I'll get :-)

So...

This morning I'm outside, to bring in the paper.

I'm feeling as fine, and mild, as the weather.

Except for an odd thought:

Here I am, feeling fine.

Inside my brain is a cancer. A cancer which is placed, and active, to kill me.

It's a strange thought.

Really, I'm not sure how I feel about it. Just... odd :-)

In general:

I have spent seven years with terminal cancer.

Constantly aware that it will, eventually, kill me. (Unless a bus gets me first:-)

Except, the brain and cancer being very complex, no-one can predict how it will start.

Headaches? Another collapse? Lose more vision? Some other form of crazy?

Seven years of feeling fine but watching and waiting for... symptoms. Symptoms that the tumour is, once again, active.

Now we know that the tumour is, definitely active.

Being slowed by beelzebub but well-established.

Expected symptoms of impending death are very narrow: increasing exhaustion, growing paralysis.

Nothing unexpected is expected, ha :-)

So how do I feel about that?

Definitely nervous.

Wondering, am I tired from lack of sleep or... something more serious.

One ... improvement... is very clear.

Waiting on unpredictable symptoms added a lot of stress to my life. I don't think I realised just how much stress.

But now I can feel it. Very clearly:  a huge area of stress is just... gone!

I can feel it clearly: worried, yes. But far less emotional stress.

And that is something to be glad about :-)

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

I'm only half right

Or am I completely wrong :-?

More thoughts on Langer

... a good topic,

... he does make me think.

So does this response. Thank you :-)

 Why not. I reckon everyone should try to be a winner. It really depends what winning is to an individual. Not everyone can be high achievers but they can win in there own way.

...

I am not a winner.

I will work,for success but .. not too hard.

Sometimes I look at my capabilities and think,

How much more could I do? Achieve?

If I were willing to try harder.

It would require a complete change in my attitude... in who am.

I am not willing to do that. Even deb agrees with that :-)

And yet

... Humanity advances because individuals want to win

... they try to win

... some do succeed

... and humanity advances.

Langer wants to be a winner

...he does have the ability

... he works hard to be a winner

... he succeeds

... and is a very positive influence.

Thanks to Langer

... and to other people who want to win

... and who work

... and try hard

... to win

... humanity advances.

We win at cricket. We reach the Moon.

We all... win.

We may... win... yes, in our own way.

But, "should try" to win?

Well, why not?

We should try.

If we do not even try

...then we lose.

Dang it Col...

You have lead me to change my mind

... my attitude.

Because you are absolutely correct.

Yes, we *should* all try to be winners.

In our own way.

Individual wins may seem small... or large.

We each should

... try to win

...win our own way.

Individual wins are good for the individual.

Even losses, are

... better than not even trying.

We should try... because even very small wins add up.

And that

...that is good for us all.

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

Double-void victory

This should be the last of the pissing posts.

All problems have been solved:-)

It starts with the discovery that, my bladder is never really empty. No matter how I push the piss, at least a half cup of urine is still in the bladder.

This leads to

... drips and dribbles.

Need to pee far too many times each night.

Often just minutes after the last pee.

Can't leave the house

... without needing to find a toilet while out, and again...

May also lead to UTIs

And so on. and on.

A real... nuisance.

The never-empty bladder is a common problem.

The "professional" advice is, to "double-void.

That is, to pee-- and then pee again.

Well, surprise, the first pee failed to empty, the second pee will push out no more.

All this is covered in a lot of my posts.

Along with way in which a double-void *can* work.

 I can now, if I remember, squeeze out that last lot of urine.

Result: an actually empty bladder.

None of the annoying pee too often symptoms above.

If you want the "secret" you'll have to read a lot of earlier posts.

For this post, it's  easy:

Last night, I pee once before going to bed.

Drink some water. Sleep soundly all night

... sleep soundly. Wake much later, then have a morning pee.

All very easy.

Next day: we go shopping. Drink coffee, eat cake.

Have no need to pee, certainly none of the desperate need of the past.

Hours later, go home, for a necessary but hardly urgent pee.

All so very relaxing !

Only one thing to remember:

If I do pee in the middle of the night

... it may feel finished, I may be tired, ready to go back to bed

But... must remember to get the double, second void activated.

The night is when I must...remember... to double void.

And now the day is

... so very, very relaxed.

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

try to listen

I'm living at home. In "palliative" care. That's not good but, could be worse.

Hey Deb! I have come home to die. Nonsense... you came home weeks before to-die! ba-boom :-)

Anyway, there is no real time limit. Meanwhile, it's a great life :-)

I'm cared for by Deb, who more than cares. Cared for by the kids, who do as they should: get on with their own lives.

And cared for by professional carers.

Those professionals are well-trained. And they honestly care It's all a great service.

Only trouble is: the professionals are trained to care but they seem unable to listen, to adapt.

Palliative care involves a lot of people, patients, who are frail and aged. Possibly, most are both. Frail and aged comes, with the need for palliative care.

I am aged -- but not frail. Try to explain that -- and the carers are not able to hear.

Take the four steps between me and the kitchen:

One of the early carers has a simple rhyme to get me safely up stairs. Something about, first knee up to heaven, next knee... I don't know. A safety rhyme from his recent training, I guess. Designed to remind me -- the frail, aged patient -- how to safely step up, and down.

Except: it is nonsense.

I can step up. I can step down. I could step up two or three steps at a time. I could jump, safely, down all four steps at once. (No, not even I am that stupid :-)

What I can *not* do -- is clearly see where I am placing my left foot.

Going up, going down, doesn't matter... when my left foot approaches the ground -- I need to place it carefully. Or I may miss my footing. My *left* footing.

I try to explain this... the carer is unable to listen. He repeats his rhyme for the frail and elderly.

He cares. He provides advice (some more useful) 

He is trapped by his training. By his preconceptions:

I am a palliative care patient. I must be frail and aged. I need help with stairs... A problem with vision -- because it involves neither age nor frailty -- is beyond his understanding.

It's known as crystallised learning: 

First is fluid learning: a young child sees what is really there. As we get older, we overlay reality with more and more experience.

Eventually we have so much experience that we can instantly see the solution to any problem... we are now acknowledged "experts" -- unless the problem is not what we, in all our experience, have learnt to see.

We lose the ability to be "fluid" thinkers. What we see is... what we *expect* to see.

You see it often in older, experienced managers. They've done all this before. In any situation, they quickly know what to do.

They are experienced, expert managers. Unless they fail to see that this situation is... different. Then they apply the same old, tested and true, solutions -- which now fail.

Sometimes the explanations for failure, the excuses, are just as tested and true... fully crystallised :-)

Hmmm... I had no idea that rant would wander so far afield :-)

So:

yes, you know. Yes, you are the expert.

You still need to look. To observe. To ask. To listen.

Perhaps... this time... there is something different.

Be prepared to think fluidly.

You may find a better solution.

Or, at least, a solution which fits the situation: as it actually exists. In this particular situation.

Be... fluid... in your thinking.

Listen... carefully... to the patient.

Dr Nick Lethbridge / Independent Dexitroboper

half blind, half deaf, dying of cancer,

So what.

===

..: notdotdeaddotyet.blogspot.com

Langer life

Last week I had a dig at Justin Langer (different blog)

He sees life as a series of highlights, hitting a six at the MCG for example. the rest as filler. All the training, just lead up to the highlights. 

My life has less focus.

Today, for example.

Deb and I finish our weekly shopping. Walk to the car.

I think, what a very pleasant day :-)

Sipping coffee. Snacking on cake, leave the bit that is too much. Deb's pleasant, relaxed company.

And that's it... a very pleasant day.

Langer is successful. A good bloke. A leader and an inspiration.

His problem is that... he does not seem to recognise that other people may be satisfied by all sorts of different things.

That's because he's a winner. Driven by the urge to succeed.

We need winners.

Not everyone must (try to ) be a winner.

Today is... for me...

Another excellent day :-)

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

Oh, it's shingles!

So now I have shingles! How very ordinary :-)

Silver Chain provide a script. ( scrip?)

Deb rushes out to get a dose of anti-viral tablets.

Deb is so pleased. To be doing... something... anything...

Well, something approved and useful :-)

And so we're both enjoying ourselves.

And I'm also itchy.

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper

   

Reaction

My chest itches. I finally think to look.

Wow! That looks nasty, some sort of a rash?

Ooohh... it itches.

Do I finally have some sort of an allergic reaction to chemo?

Ooohh... I go to bed.

Next morning, I proudly show my rash to Deb.

Her instant reaction is...

Quick, call a doctor, get treatment, drugs, any injection... do something. I rub the itch :-)

Last year, deb had an anti shingles injection, perhaps I did too? We could phone the GP, ask. That's too slow for deb. She phones the 24 hour Silver Chain number for support, advice, help. That was half an hour ago, no call-back yet.

Here's my cunning plan:

Do nothing (except itch and rub) till my next IV treatment. That's five days.

Then, fill in the standard pre-treatment form...

At last I'll be able to tick something other than... no, no, no, no....

Aha! Silver chain call back. Some action for deb:-)

Call the oncologist, tell her, they say. Then, if advised, the GP.

Call? I'll send an email, Daphne is good at responding (when she's working:-)

Deb is a lot happier, now she is able to do ... something... anything :-)

half blind. half deaf. dying of cancer.
so what?
notdotdeaddotyet.blogspot.com :-)

Dr Nick Lethbridge
Consulting Dexitroboper