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