Wednesday, October 16, 2024

An absolute thrill

Pwmapapp was written over a year ago.
I set up some maps for fun and testing.
The plan is, the next Novelty rogaine can record control finds using the app.
With paper and pencil backup just in case. Well, paper and pencil as the real ecord, pw for extra fun... and to see if it really works.
I install the app on an Apple phone, it works. Clunky but effectively.
Then I put the app aside and spend a year doing all sorts of other things.

There are messages from Apple and from Android. Things which must be done to keep the app active.
Most messages I ignore. My ignorance is too deep to do anything useful.

In 2023 the rogaine is cancelled due to dangerously hot weather.
Now the rogaine is rescheduled, for a few weeks from now. We are preparing to try to run again.
By we I mean my co-setter. My health is bad, I can think but not do much.

Just for the heck of it, I load pwmapapp onto my tablet. A new, different tablet. Android. So, all new, all different...
And the bloody app still works!
Just as clunky. Just as effective. All colours, style, concept exactly as I originally visualised it.
What an absolute thrill :-)

With grateful memories of the coder. A man who could listen. And turn my idea. Into an actual... still working... app.
Amazing :-))
I'm thrilled




My body is a temple to health and fitness.
but there is a devil-worshipper in the temple: notdotdeaddotyet.blogspot.com :-)

Late night

Squeak, scrape, slide, Bing, squeak...
That's me, zimmer-framing between bed and toilet. And the good news...
No falling over. No feeling faint. No dizziness. No getting lost.
Just restless. Well, this has always been the time of day, night, when I want to do things :-)

All good, eh?


My body is a temple to health and fitness.
but there is a devil-worshipper in the temple: notdotdeaddotyet.blogspot.com :-)

Tuesday, October 15, 2024

What is wrong with me?

Sure, cancer. And terminal.
But why is it getting worse? Here's  how I understand it:


The cancer began as a hard tumour in my brain.
The tumour occupied brain space, pushed aside good brain. 
This caused actual damage, a sort of short circuit in my brain. This caused a seizure, I collapsed.

My cancer is an aggressive sort so the tumour was removed, radiated, chemo-d. All good, no real problems.

A side effect of radiation was further damage: expanding necrosis. To remove that, more brain was scraped out.
All this was in the visual cortex, the bit of brain that tells me what my eyes see.

The removed cortex was very specific, it interpreted what both eyes saw to my left. So I can't see, or understand what I see, on my left.


All this time, loose cancer cells drift round inside my brain. Impossible to remove.


Finally, some cancer cells find a home, settle down -- and grow into a new tumour.
Still near the original site. No great damage... but the new tumour continues to grow. Slowly.

Until...

For some reason, 
Unknown, this new tumour puts on a growth spurt. Always expected though the timing was was unknown.

The growth spurt expanded the tumour, still in the visual cortex. Caused a bit more damage to vision. I lost a bit more sight on my left. Not enough to really notice. Except...

The cancer has -- without much warning -- expanded well beyond my visual cortex. Into my brain stem, which is a very vital part of my brain. It controls much more than vision, though don't ask me for details.

Still thinking of my cancer as a hard tumour in my visual cortex, I go for a walk. Yes, I notice that it's harder to see to my left. Which makes me swerve as I walk. All vision symptoms. But what I also have is a form of stroke, damage to my brain. To the right, so the effects are all on my left.
Physical Weakness, loss of physical control.

Now the effects of brain stem damage are kicking in.

What sort of damage?

Yes, there is cancer / tumour.
Also... the cancer is causing related brain damage. Swelling. I think of it as bruising, caused by the growing tumour.

My brain is closing down. Tumour and swelling are causing pressure and physical damage to the brain.
Enough! The brain Can't be bothered keeping me upright.
I fall over.

Okay, into hospital.
The cancerour area is cauliflower shaped, far too complicated to allow removal of tumour. Not without risk of death, anyway.

But tablets can help:
Dex reduces the swelling, kepra prevents actual seizures.
All preventative -- there us no cure for this cancer, no chance of removing it.

The swelling is being managed but the cancer is still there, probably growing. In a very dangerous, to me, area of brain.
The brain stem is damaged, cancerous. I may collapse at any moment.
I walk very very carefully :-)

Due to brain stem damage -- still growing, unstoppable -- I will gow more tired. Weaker. And lose more control of my body... gradually growing paralysed.
Until I can't move. Or don't wake up.

But...
I'll start new chemo. Not a cure...
Dex will continue to reduce swelling, kepra to resist seizures. Both maintaining my quality of life (which is currently very good :-)


The next chemo... Beelzebub, a mono clonal antibody, I think...
Should reduce blood supply to the tumour, slow its growth. For weeks or months. Until the chemo no longer works. It's very new 
Treatment, effects uncertain.

With less brain swelling and less chance of seizures -- I'll be fine.
Until I'm not.
And then... I'll be someone else's  problem.

And that's how I understand it. If I'm wrong... I still believe that I'm  right :-)







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

Fwd: back to everyday stuff



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

---------- Forwarded message ---------
From: Nick Lethbridge <nickleth@gmail.com>
Date: Tue, 15 Oct 2024, 2:43 pm
Subject: back to everyday stuff
To: Blog to my3rs <nickleth.elephantarse@blogger.com>


Catching up on things. Emails and such. And... just yesterday... the paper printed one of my letters! An extra though small buzz:-))

Settling into the new house layout, and my orders to be careful.
In the morning I manage to shower, shave, brush teeth. cut nails. All by myself (with Deb within cooee. But not needed.
It's easy for me, it's Deb who needs to gain confidence in me. So, a bit relucantly: Deb is off to take grandson from school to swimming lesson. A few hours of me left all alone... with a phone, in a comfy chair. And zimmer frame within reach. 
No worries (by me). Deb needs to get out.






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

Monday, October 14, 2024

Happy, tired, worried, happy

Sleep soundly, wake early. Even have a shower,  voluntarily.i will amaze deb:-)

Good to go. Ready to go.
Deb picks me up, does all the talking and paperwork and we leave. To drive home.
Deb, and the boys, have made a huge effort to make the house safe for me... in case I fall, again, or trip or just collapse. eg i am not, definitely not, allowed on any stairs. Difficult, in a house over3 or 4 levels.
It all feels so welcoming. I'm so pleased to be home.

Deb worries. Shows me where I go and don't go. We agree we can sort it all as we go along. We both hope there will be enough time to sort it all out.
Lunch, pause, dinner. Familiar, home cooked food.
Send a few emails, do some odds and ends that are easier done at home.
I sit in my allowed chair and fall asleep -- to wake up 3 hours later. Takes me a minute to get my bearings. Easy to remember where I am but I have to work out what time it is...
Okay, remember home, dinner, sit... must be 8... pm. Aha.

A momentary worry: as the cancer attacks my brain stem I will get more and more tired. But ... that is not yet :-)

I wake momentarily.
And... even if/though I am eventually dying -- it is not yet.

Happy. Very happy :-)





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

Only when I'm actually dying

Family gathered round? Maybe, if they have nowhere better to be. Deb? Watching with sympathy, maybe holding my hand, sorry deb. Only if you want to.
Hushed whispers of the death watch? Forget it. Family chatting, kids shouting, no worries. But here's the biggie:
Why waste a learning experience.

There are creeps who make a living out of pretending that a dying person needs Dim lights, scented candles, very expensive paid hand-holders. I had an earlier rant about these disgusting "death doulas". If the survivors want fake comfort, fine, but why do they think that the dying person cares...

Ask me... when it's  happening.
I'll try to remain aware, as long as possible.
Ask me, do I enjoy the soft music? Would I prefer proper music, Queen or Meatloaf?
I'll do my best to respond. You know: a twitch of the finger for Yes. Or maybe for No, or maybe for Maybe... Ask me to twitch once if a twitch means yes... whatever.

I'll do my best to respond. To add useful knowledge to the understanding of death. Drive the death doula vultures into a more honest business.
See, I'm analytical, and interested. The death of an intelligent person is a brilliant opportunity to learn.
Or... I may just drop dead ;-)

But not right now, thanks. It's almost time for my breakfast.



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

Timeline, unknown

The timeline to my death is, really, a total unknown.
In 2017 it was an average *expectation* of 18 months from diagnosis to death. Five years would be extreme.
With excellent surgery, improvements in medicine, who-cares attitude and enormous good luck, here I still am after seven years.

On my latest arrival at hospital the surgeon looked at my CT scan and said that I may never leave the hospital (alive).
He looked at the clearer MRI and said I may be dead within weeks. He's a surgeon, I would probably die under any attempted surgery. He's honest, says it as he sees it, I really appreciate honesty and like the man.
The oncologist offers newish chemo, sounds like beelzebub. I'll try it. The surgeon says it may keep me going for just maybe months, the oncologist hopes for maybe a couple of years. 
Really... no one has a definite answer.
You gotta laugh... or you'd have to cry. I'd rather laugh. I hope I can keep laughing right up to the end. I see the light! I see the light! It's... what the Hell is all that light ... LOL



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