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