Not Dead Yet !: 2025

Thursday, April 17, 2025

error checking

if I do post again I will not worry too much about accurate typing (accuracy of facts was never a worry:-)

just imagine it for yourself.

if you see the post about vision and crosswords -- imagine problems for democracy :-)

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper

happy ending?

a restless night in the hospital.

but I waketo an excellent breakfast.

I'm happy, ready for another day of drugs and sleeping.

I open curtains. Look out at a view of a roof and a building site.

okay, move back a bit and see a few trees in the hazy distance. enjoy our beautiful climate while Iwait to die

AndI think:

I am meant to be under palliative care.

a deliberate choice by me and Deb. I go home to sit in a comfortable seat where I can watch the sun and birds and garden.

aside: I have come home to die...

nonsense, you came home yesterdie:-)

okay, this looks like something lost by an over-sensitive tablet screen

let it be!

more at home

or probably we don't plan

... just continue to enjoy

and drink coffee and drive on country roads.

and I can see half the scenery :-)

luckily deb can still drive

and deb still goes running, while I stay at home and read.

drat, probably not writing (

watch this space.?. occasionally!

we'll do what we can

enjoying each other's company.

until whatever happens... happens.

happy at home

maybe we plan for a final six months

BTW, that's 12 months less than original post diagnosis plans. which had to last seven years :-)

aargh

tried to type too much, lost some, all. may be repeats

legs,lungs,heart

I guess weak legs will lead to falls, more care needed with the balance frame.

lungs my be damaged

... I now have a collection of ventolin puffers, they help.

lungs will get worse.

heart will stop nothing to do about it.

so, back to palliative care, waiting, at home. nervously.

we get home... what a great pleasure :-)

... and I realise:

we have used the IV option

perhaps the last six months is thanks to the chemo?

we reject the newer, low odds bad side effects drug

otherwise we are back to almost exactly the situation of six months ago! having just made, again, the decision to die at home.

six moths enjoyment and all we have lost is on drug option which failed to stop tumour growth anyway.

not exactly progress... but not to

the option of bevilacuzod ?? has been tried, largely failed.

the other drug has equally poor test results.

plenty of antiviral and antibiotic drugs to be taken to speed up lung recovery.

enough!

disease progression

my cancer is well into the brain stem.

I should lose body movement including heart and lungs. which is my excuse for a panic trip to hospital -- with flu preventing my lungs from working.

okay, my lungs may have been weakened but... still on the same progression.

status today

darling, I have come home to die

nonsense darling you came home yesterdie ha ha :-)

yes, I am home and reasonably happy

then the entire tablet screen changed, must have touched it. some bits seem to be saved... I'll just type random memories.

I'm thinking, why look out this gloomy window

...I'm meant to be at home enjoying home life. and dying peacefully.

now this hospitalhas done all it can, my lungs wheeze noisily but I breathe okay

time to get back to enjoying palliative care.

I tell everyone, I'm checking out today

against doctors advice, they say. not a serious threat to me :-)

my signature lines do not joke!

I'll finish this, perhaps send only very short posts after this.

one:odd vision aside

The original tumour took out the bit of brain that sees to the left.

When it grows back it will be close by. So I have always guessed that new-tumour effects will be similar: loss of more vision off to the left.

yep :-)

Actually I'm not sure if it's to the left, I've not checked. But my vision is certainly worse.

a simple example: I'm doing a crossword. I put the pen into a square, start writing. A bit later I realise that I wrote in the wrong square

I try again, a different clue and write in a square whichruns over the origin

brain fading, typing blind
If msg is nonsense pls -- guess or ask

===

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

and ranting: My Three Rs

===

connectedto hospital WiFi at last

...so simple

... once I found it !

idiot :-)

Wednesday, April 16, 2025

nurses

all good !

say no more :-)

hmmm... I can't work out the number of sleeps...

after one sleep I woke from a very vivid dream. I was still half in the dream for a while.

after a later sleep a nurse commented, you're less groggy today.

later, a nurse commented to Deb, he says strange things.

Deb replied, it's okay, he's always like that

emphasis.

medical intrusions

I suppose I should mention what has been done to me in hospital! nothing much.

a cannula in one arm, dripping in medicine and saline.

quite a few but not too many pills now and then.

I find i can swallow pills with a few teaspoonfuls of yoghurt

...with water, a pill just swirls round my mouth and

I fail to swallow. yoghurt was a valuable suggestion from a nurse.

by various means, tablets and IV drip (I don't ask for details) I have been given antiviral, anti-bacterial, anti jack (no, not that last),new style nebuliser (new since the old asthma puffers.) a very clever design.

, perhaps others.

and I've given just a small number of blood samples.

so treatment has been minimal and not too intrusive

I've said it before: medical treatment is simplified if the disease (my core disease of brain cancer) is untreatable.

to to chorus of

... always look on the bright side ... :-)

cheerful? yes

... deb will be in tomorrow, I'll be home in less than a week, then back to the annoying but painless fading away.

oh, yes, the flu came from a granddaughter, thanks :-( but, having tried it myself -- she now has my full sympathy, poor kid :-(

the usual mix of treatment for unidentified infections.

... I'm gradually feeling and getting? better.

still stuck here for at least a couple more days.

remember my comments a few days earlier about the cancer doc? one of her assistants dropped by today to ask a list of standard questions.

standard stuff that, over time, we have already spoken about with the doc.

deb wondered, later, why he did not just read the doc's notes

even in the first 4 or 5 months of "treatment" by the doc, I noticed several points discussed which she had forgotten. or missed writing into or reading from her notes.

and here's the biggie:

she sends her *assistant* to ask,

... and if you are dying -- how much effort do we put into resususitation?

I know there's a phrase for it.

the only phrase I can think of right now is,

pathetic b,body imitation of a cancer doctor.

rooms

hospital rooms tend to be bland, sterile, boring.

I'm now(wed) in St JoG Subi.

this one room seems... pleasant, almost homely?

...perhaps an older, less square-edged design? perhaps the random collection of "be nice" posters on the walls?

perhaps it's just the first room where I have looked and stayed awake for more than a minute. I sleep... a lot :-)

It's quite pleasant

t to be sitting in bed, well fed, no medical intrusions till tomorrow

... time to just sit and appreciate.

meals

just eaten dinner. time to discuss hospital food

In general I'm impressed by the variety of available dishes. all quite edible,too.

the comments below are exceptional, for the sake of entertainment.

I checked in, twice, between times for ordering, so took whatever I was given.

Tue dinner. sandwiches, okay but I didn't like the vinegar dressing.

plus custard and jelly, my favourite desserts so a good meal.

wed breakfast: standard cereal, bread, marmalade. small by my usual standards but my appetite is currently weak.

wed lunch: beef rogan Josh? that's what it may be in the original chef's mind

spicy but mild enough to eat.

luckily I'm still not hungry, Indian spices are my least favourite, I left most of it.

deb visited all afternoon, very nice. she also phoned in my next couple of orders.

I always have mac cheese in hospitals, and similar mass food joints. it's simple, bland, easy to eat with a fork or spoon.

the kitchen must have seen me check in and immediately prepared my mac+cheese... it was dried out. needed to be eaten using a knife. tasted OK tho.

and pumpkin soup. my fluid intake is very low.

the best way to ruin pumpkin soup is to use pumpkin which is not fully ripe

...yep, the pumpkin was not fully ripe.

however... they had added leek and potato and some unidentified flavours

... the resulting soup was delicious.

and a cup of tea.

the default drink is always orange juice, not as good as a cup of tea!

I also get 3l of IV medicine, lot of liquid but, again, not as good as a cup of tea:-)

hiatus

i have fluA a touch of pneumonia plus feeling quite weak but no more serious than for months

after visiting ED ED andtwo wards i still have no idea how to connect the laptop to wifi

so posts are restricted to what i can bother with on a tiny phone screen

will be in hospital several more days

Dr Nick Lethbridge / Consulting Dexitroboper
...

===

If everyone is thinking the same way, then someone is not thinking.

Tuesday, April 15, 2025

flu?

perhaps it's the flu. if it's flu, if had better b ereally io Iid *man* flu...

or possibly.

perhaps all that I have is a simple chest infection

something that will drown me in phlegm.

oh what a choice ;-)

worried

here's how i feel right now:

if I live another week, I shall be surprised. and pleased.

my cold is now a snuffly nose and a wheezing chest.

how my cancer should progress:

lungs stopping working... no orders to breath getting through the cancer in the brain stem.

I actually spend quite a long time tonight consciously breathing in and out.

I don't like the cancer doc. deb says, but she kept you alive for seven years.

she certainly did not kill me. despite an aggressive, terminal cancer.

so... thank you :-)

and thank you to anyone who reads this blog. it's written by me, for me but I appreciate that other people are interested

returning from the toilet. it's dark.

I reach forthe light switch. pause

say aloud

I'm scared

scared of what? not really sure.

but I am scared,

deb wakes up,turns on her bedside light.

I get back into bed, no worries

but I am not sleeping, not even sleepy.

I get back into bed, no wor..ies

....but wi d e awak.e and still scared.

jy lunggs is are asthmatic -- not getting a full breath of air.

Monday, April 14, 2025

expert advice

here's some advice: think very carefully before following expert advice..

in fact, if an expert starts giving advice -- make sure your wife or carer is out of hearing.

we now have a hospital bed --headboard, electric up and down, safety rails, the works, courtesy of Silver Chain. plus a tray table on wheels.

why?

because after 20 years, our real bed is too low. or too high... I forget which, various experts have different opinions.

we keep our real bed, the new bed is in

another room.

I get familiar with controls and settle in. with a cup tea and a book on the table. ah! the pleasure of being able to sit up and read in bed.

deb goes to bed in the real bed. a couple of hours later I wake up -- and find that I am trapped in the hospital bed...

I manage to scramble over the rails, chlamber out of that bed

next day deb tells me which button i should have pushed to escape. quite simple, really.

I return to our real bed. the hospital bed has been unused since.

next, the SC expert decides that our real bed is too low. it needs a rail. deb rushes out and buys a bed rail.

it's very stable, held firm under the mattress.

let's call this the short rail.

at night I always park my walking frame next to the head end of our bed. to find the frame I just wave my arm and there it is. once I have the frame I grip the handles, get out of bed and am good to go.

to find the short rail, the simplest method is to find the frame them search back towards the bed,

of course once I have the frame, I don't need the rail. but it is still there.

tonight I park the walking frame in its usual place.

get up to go to the toilet

... and find that the frame is caught up on the short rail.

to get free I have to wake Deb and get her to turn on a light. free at last...

go to the toilet. park the frame, get back into bed.

a couple of hours later I repeat the process

... including having to wake Deb so that ican free the walker from the bed.post.

quite funny :-)

until a few hours later when I have to wake Deb for the third time :-(

that bed post will be gone tomorrow.

is our bed too high or too low?

forget the supposed experts.

I'm going to sleep in a bed that let's me get in and out.

Sunday, April 13, 2025

deffect defect

I've had cancer for years and, as far as I remember, the worst effects have been due to treatment.

I've had a "common cold" for a week and I feel absolutely rotten.

something seriously wrong with the balance of immediate symptoms and long term effects.

Just as well, I guess :-)

Wednesday, April 9, 2025

pessimistic

I did use the word, and I am... pessimistic.

I recognise that the end is, indeed, nigh.

but when? we have no idea.

days? weeks? months?

Deb and I live life with no idea when it will end.

... just like everyone else, in fact!

today I'm gloomy

... that's because I'm tired, that's all.

time to get back to bed, see if I'm ready to sleep

Wed am

I wake up feeling quite rotten. nothing specific...

tired, not hungry, not even thirsty. very tired.

mostly: just a short walk is exhausting.

I could say that I am weak and tired... a sign that the end is nigh... but that would be pessimistic...

Wed pm

... sleeping is no help -- I still feel bad... tho not quite rotten :-)

deb is out all afternoon, I sleep.

Wed night.

lying in bed, I seem to have asthma. can't get a good breath. I toss and turn.

give up trying to sleep

Tuesday, April 8, 2025

no significant change

the last brain scan shows that the tumour continues to grow... the chemo may have slowed it but not so we can tell.

This is as expected: two available drugs, neither has much chance of doing anything useful.

So my choice now is, drug free... just wait and see.

So far -- as predicted -- the tumour makes me slow and tired.

I can walk say 100m, no worries. Especially when the 100m is with Deb, and leads to coffee and cake :-)

But the "tired" makes it very difficult to get started. I spend a lot of each day resting, dozing, sleeping.

it's annoying to be awake in the middle of the night and be too tired to write, or even read.

this morning, for example, I slept for an hour before I could be bothered starting this post.

on the other hand: being tired is pretty trivial.

sometimes I have a quick flash of a thought, a few months and I won't be alive to even think of doing... whatever it is.

Funny, though

... I usually think in terms of, Deb won't do this without me. I've had a good life -- specially with Deb. There's nothing left in any "bucket list". except, perhaps... more of the same :-)

Monday, March 31, 2025

stupid doctor

deb phones the cancer doc to confirm that we will not be turning up or further treatments which have very very small chance of doing anything worthwhile.

I think deb is upset by it. getting practical on my impending death.

poor Deb:-(

for me, death is still a very vague concept.

I'm confident that it will be slow and painless

but I now sleep, or doze, all day. and and any walking at all makes me puff and pant. I can still keep going... slowly

today I make it out for coffee and cake :-)

... but the

effortinvolved is

very annoying

the cancer doc tells deb that I will not be paralysed legs down.

as far as I know no-one ever suggested that.

the cancer doc is an idiot.

I suspect that she is not interested in cancer. she spent a lot of time discusing how my dex dosage, or the IV could be slowing me down

when the brain surgeon blamed cancer getting into my brain stem the cancer doc effectively denied the possibility.

I suspect that she knows nothing about brain cancer.

it also seems that she does *not* enjoy talking with patients about their cancer.

right... I do *not* like her.

deb says, she kept you (me) alive for seven years.

no. I stayed alive while the doc ticked boxes in a list of what to do next.

Saturday, March 29, 2025

strange times

the last few weeks have been quite odd.

things happened which made a bit more, or less, sense later.

I'll brain dump some high and low points:

from memory, so accuracy is not guaranteed.

I spent some months having bevacizumad by IV once every three weeks.

after the first dose the tumour shrank by about 20%

I think of that shrinkage as due to to power of positive thinking.

after that, the tumour continued to grow despite weekly IV.

no useful effect, so we cancelled further IV.

later, deb tells me that we have also cancelled starting with a second drug, lomustine.

I know a lot about lomustine but cannot remember ever being told. I suspect that I was asleep when it was being discussed.

I did not hear any discussion of lomustine.

I sent an email telling the cancer doc that I am deaf.

it is possible that the ten pages that seem to be a blank drug schedule are the doc's attempt to give info to a deaf patient.

it worked well. I was able to yo to Wikipedia to read up on the drugs. and ask an expert whose voice I can hear.

the two drugs have similar effects:

very small chance that tumour growth may be slowed

small chance of a few months of extra life. some chance of nasty side-effects.

every day I feel weaker and wearier. this is just death by cancer. I don't notice any other side-effects. I'm sure I will live those few extra months, eventually :-)

so the drugs are having no effects

life goes on and so do I, so far

I don't regret getting off the drugs.

Monday, March 24, 2025

weak, weary, sad

being weak and weary is an expected part of my dying.

possibly exaggerated because I'm expecting it.

no worries, I've been quite cheerful as I doze for most of the last few days.

and today we enjoy an outing to a cafe.

later and I'm reading a book which includes several pointless deaths.when I realise the deaths make me miserable.

I put the book aside and immediately feel better.

Thursday, March 20, 2025

more meeting memory

deb reminds me, I did go in with clear questions... which the doc answered

is this, getting slower and weaker, what will kill me? yes

are the possible head aches a lead in to something worse?

no...just another aspect of the same slow and steady decline.

phew!

treatment

we meet with the cancer doc, to discuss the latest scan results.

and, I guess, to look at future treatment.

Why "I guess"?

I was handed ten typed pages about bevacizumab and lomustine. Handed to me by an unfamiliar woman. no introduction, no explanation.

a bit later, the doc may have said that the strange woman is the doc's offsider.

what I do learn is that I can closely watch the doc, listen carefully to every word she says -- and have no idea what she is talking about. I'm not sure if it's because I don't like her or if it's why I don't like her.

Anyway, talking with Deb and reading google, those big words are cancer-treatment drugs.

those ten pages are supposedly a treatment schedule -- with no dates, no details. nor any date for a scan to check progress. so I guess it's just ten pages to be binned.

One thing is clear, from the meeting, my tumour has grown

i've been on bev... treatment for a few months.

in the first month the tumour shrank. Since then it has grown... bigger? smaller? than the original? No idea.

today (the day of the meeting, was an IV treatment of bev...we went on to that. What about the next? in another three weeks?

and should I try the ther drug, lot... capsules.?

according to Google... neither will do much : a low chance of doing nothing much at all

... and the nothing much would be just a few months extra life.

oh, and most of the ten pages is side effects. all of which are, if you get this, go immediately to emergency at your nearest hospital.

so a few extra months of really lousy quality of life.

our immediate response was to leave. and probably stop treatment.

the very first shrinkage of the tumour, I'll put that down to a clean life and positive thinking.

now, several days later, I'm trying to document the value of that meeting.

printed info: nothing I can do for myself. nothing from the doc to say what to do.

google follow up, not promising.

cancer doc value: bugger all.

it's easy to say, no more treatment.

the decision does feel a bit uncomfortable.

I may as well depend on more positive thinking.

Tuesday, March 18, 2025

decision

we have a brief discussion on my treatment decision.

we are both happy happy? satisfied,at least

I will stop all treatment.

neither chemo drug will stop tumour growth.

both come with side effects, one sounds unpleasant.

if I get noticeably better or worse, we'll reconsider.

meanwhile, give my brain a chance to see what it can do unaided.

===

an alarm goes off. a reminder that it's time to take a grandson to his after school swimming -- my favourite day of the week :-)

I'm already so slow, and need the walker, I stay home.

disappointing.

Monday, March 17, 2025

cause of death

that subject line is misleading

it should be *probable* cause of death.

...today there is some very direct questioning of the cancer doc. I don't want to be caught dead by surprise.

===

yes, there is cancer in my brain stem.

at the start of the current IV chemo, it shrank.

as the IV continued, the tumour has grown again.

More of this chemo is *not* likely to stop tumour growth.

there's a different IV drug that I could try.

It is just as *un*likely to work.... the tumour will continue to grow. either drug is a real clutching at straws option.

Or I could do nothing

... stop IV completely.

... the tumour will continue to grow.

three choices, each with the same -- probable -- result... a tumour which continues to grow.

so what about the headaches which I'm warned about? simply a result of a growing tumour which is pushing the brain out of shape

... just another aspect of a growing tumour.

no matter what I do, a growing tumour is the likely outcome.

a growing tumour will slow me down, make me weaker. until, one day someone notices that I am so slow and weak that I am dead.

I start today feeling very tired. very, very tired.

walking is an effort. even standing still is tiring. this matches what I expect as I die of cancer in my brain stem.

easy, slow, no timetable, completely painless, very annoying.

Monday, March 10, 2025

quiet week

I still want the "experts" to agree on what aspect of cancer is most likely to kill me. Only so I can watch and analyse early symptoms.

having posted the thought, I put it aside and forgot what I had posted... very cathartic and effective.

I'm still feeling weak and very tired, but with no new cancer effects.

feeling well enough for regular Cafe outings with Deb, tho I sometimes I need to rest on the walk to the Cafe.

I've had to miss my favourite weekly outings: taking grandson to swimming after school. just too many hills to walk. I'd take all day!

it's been a week of no real change. unexciting but good. well, not bad...

I have had beaches (only3/10) on two days so there's a negative... which may be related to what will kill me

... or it's due to reading a lot...?!

Wednesday, March 5, 2025

5. why post?

have I finally reached tho pint which took me to the keyboard?

I woke up.

thought how easy it will be to die.

ignore the cancer doc. she has said nothing about what will kill me. so I ignore her.

there is cancer in my brain stem.

this will make me more tired, weaker.

till I am so tired, so weak, that I die.

already, in the last days and weeks, I have felt more tired. weaker.

all completely painless.

so far, I am following the the surgeon's expectations.

perhaps the oncologist believes that I will suddenly collapse in screaming agony? if she can't be bothered saying so then

... I'll stay with the painless possibility.

meanwhile ... over years...

... friends and strangers have all died of "my" GBM.

one pop star had debilitating headaches before he was even diagnosed with GBM. I have no real headaches.

one wrote a book, collapsed in tears, tried ridiculous alternative treatments, died anyway,

I just take whatever treatments I'm told to take.

millions of people die of all sorts of things. thousands die of GBM.

And I just carry on. take the chemo. unexpectedly shrink the tumour.

... and get angry because two experts can't agree on my diagnosis.

I'm comfortable. I'm happy. enjoying life as it comes... as it lasts.

I'm hoping that friends, family... anyone else, reading this blog or not

... I hope that you a re all well.

and for some reason

... I feel the absolute need to document that thought.

keep well! you lot :-)

4. 4. expert agreement

I sent an email to the oncologist.

asked he to send me an *email* when she and the surgeon agree on my diagnosis.

I think I can, now, understand why they disagree. not just because the oncologist is an idiot.

now I'm annoyed at their disagreement. but not furious.

happy pills? doing no good whatsoever, as far as I can tell. but why should it improve my mood? the obstacle is still there, just lesser.

3. angry? why?

this, I think, is the post which must be posted.

I may be just a few days from dying. and dying is so easy.

if depression is at one end of the road... there are several obstacles on that road. each of which makes me angry.

last night I wrote an email which, just by being written, has cleared one obstacle. hmm need yet another post!

2. bad eyes

for some reason my new reading glasses really please me. well beyond the barely noticeable improvemen

t in vision.

and so now, when my vision is really playing funny buggers, it is really annoying.

hard to describe but well leave it at that! typos are too easy. I do a lot of proofreading and correcting.

1. home alone

I wake up thinking, death is very close.

and very easy.

why am unworried by irrelevant matters?

I also have a feeling b that there is a full moon in the sky but I don't see it.

Full moon? no, no idea what that's about.

But the rest is just demanding to be documented.

over several posts, apparently.

so...

deb is meeting a friend for lunch today. will I be okay? deb wonders.

sure, I reassure deb. I could drop dead while you are out

... or I could drop dead while you are at home. no difference.

if I'm at home I could phone an ambulance, says deb. and I'd still be dead, I reply.

which all loads to, why does deb want me to keep my phone close to hand? so I can grab it and call for help, she says,

in which case the phone should be lying on the floor...so I can reach it if I'm stuck on the floor... again.

these are the conversations we have :-)

Sunday, March 2, 2025

deaf

Deb has just told me that the cancer doc has clearly and carefully explained why she disagrees with the brain surgeon. And that Deb has also told me that the information was passed on to me in our regular doctor-patient meetings.

So from the past few months this is all that remains:

Further, Deb tells me that she, Deb, has already explained all that to me.

... I have no idea what is happening.

... I'm getting deafer and hear nothing.

... the happy pills are completely useless.