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 :-)

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 :-)

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 :-)

We're all gonna die

It's a cliche, we're all gonna die.

I just have a clear idea of likely cause. And... a short future timeline. Weeks to years is the current optimistic estimate. There are several good points.

I'm analytical. I really enjoy having so long to analyse the process.physical, mental, emotional, all ups and downs. Analysed,understood? Written down --then forgotten. So I can move to the next up or down. No regrets of the past, free to think about and try to accept the future. Exactly the way prefer it.

I am still very glad that it's me. As opposed to anyone else in my small family. Friends and further relatives get sympathy for death and illness, deb and children, I want them alive and well.

Though deb worries, that's bad, I'm sorry.

For others: sympathy, understanding, put up with me but please don't worry. It's happening, worry will do neither of us any good. 

As far as I know my cancer GBM4 or am I now at GBM5?! Is not hereditary, good. Certainly not catching. Good again.

So. Here and now: fine and dandy with undertones of fear and, disappointment... life is so short! There's so much left undone! On the other hand... I'm so lazy I'd never do much anyway. Slow speed enjoyment, happy to leave others to sort out the undone.

And no regrets.

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

I'm awake

I wake up to go to the toilet at 530am. I'm awake so I may as well get others awake:-)

My balance to and from the toilet is fine. No confusion, no falling, not even swaying. Good.

I was awake till after midnight then slept soundly, a good typical night.I like typical, it's a good sign.

I ask for a cup of tea, get observations taken, all good. Blood sugar is 7.6, good, now I'm ready for breakfast,I'm not allowed to eat till after blood sugar.

And so my day begins -- on a high note :-)

This hospital room is too cold. But no direct wind on my bed and I'm prepared.i sleep in a wool thermal, wake damp but the wool is still warm as it dries. Smelly after several days but still so comfortable.

Yes, I know this is all a bit disgusting but that's me, not the hospital... I'm practising good attitude:-)

While awake I'm thinking deep thoughts, there are so many of them... I've had seven years to think about the surprising inevitability of my own death.all thoughts are somewhere in this blog but I may repeat highlights --because this blog is for me -- and really, I'm still coming to terms with the inevitable. My blog, my choice of topics. But not in this post.

I'm awake. Feeling as good as ever for any early morning. Waiting for breakfast. And really looking forward to seeing deb -- and getting home.

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

Motto

I have a new and relevant motto for my life:

My body is a temple dedicated to fitness and healthy lifestyle.

But the temple of the temple is occupied by a devil-worshipper.

ROFL

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

A better day

Every day, in every way, we get a little bit better LOL

I've just spent 20 minutes trying to convince this tablet to accept voice input. With no luck. Oh well, perhaps another day... now to continue with one finger typing.

Blood sugar wobbles up and down. Probably  not a problem, the dex drug can cause that. Over a score of 10 and I get an insulin jab.after dinner I had 15.6 then a half dose of insulin. Just now, score of 10.9, better.

Anyway...

Deb was with me for most of the day. Very nice.

Then she went home to supervise the boys setting the house for safety: which means, no more stairs for me.

Deb and I will sleep downstairs. They will have brought the big bed down the stairs. Safely, I hope.

I can't avoid all steps in tour house, just a few steps between garage and new sleeping level.and a few to the kitchen if I want to make a cup of tea.

Deb was really worried, The house is not safe!

Then she got the bit between her teeth and sorted it all out. With expert advice and heavy lifting help from the boys. Tomorrow I'll see the results, probably an amazingly safe house and many aching muscles.

I'm excited :-)

Tomorrow afternoon I'll be home again.

With minor drugs to keep me "okay" for three weeks. To be followed by three months of chemo... IV drip feeds every three weeks.

The chemo is not a cure. It will slow down tumour growth and maintain quality of life... for weeks. Or months. Or... most optimistic guess... almost two years. With MRI scans every three months, to see if it's working.

Ha, who knows. I'll be able to wear the motto shirts again: Enjoy life, three months at a time:-)

At least I can stop expecting mysterious but unpredictable symptoms of brain damage. My only worry will be to be careful. Of increasing tiredness, growing paralysis, eventually failing to wake up. Simple... no *unknown*possibilities... and that's something to be glad about.

Good company.Predictable problems. A definite plan. Going home tomorrow...

Today is a much better day.

dying for you to read: notdotdeaddotyet.blogspot.com

Status 13oct24

It's 4am on a Sunday. I woke up half an hour ago, cold and thirsty.and, now, tired but a bit restless. A good time to think about how I am and how I feel.

Emotionally: quite good, really.

It may be that I really have passed through denial,etc,and into acceptance. Definitely not happy but --right here and now -- content to accept what is happening.

I almost typed, what *will* happen.

No. I'm... closest I can think of it is...I'm annoyed.

So much to do.most of which I could never do anyway. See, if I ruled the world... I have so many ideas for improvement :-) most of which would be impossible or fail, I have another blog for them...

So do I have "so much to live for"? No, rubbish.i've lived and am living an excellent life. Like most people I guess, I could do, should have done, a whole lot more, even better.

I'd like to save the world but, A. could i? Perhaps my ideas are wrong, B,is the world worth saving? Definitely yes, 

C does the world want to be saved? Probably not, not to my particular standards anyway.

Sorry, rambling. And there's more.

I hope I have made a difference. In a small way, in a small area. If my world saving drive was stronger -- I would be miserable for never meeting an impossible, possibly wrong, standard.

I hope I have made deb's life happy. I'm amazingly impressed by our two boys. Pleased with the two "daughters" they have married into the family. Two grandchildren growing up to be terrific. Enough :-)

Let someone else save the world. They'll get it wrong but I won't be here to worry.

Right now I am tired but happy. With undertones of fear and misery and... relief. Seven years of worry getting closer to the long expected end. Phew :-)

Physical status: dying.

Brain cancer diagnosed as GBM4 in 2017.

Now: tumour extended into the brain stem. Deadly. Life expectancy anywhere from weeks to months. Not years.

Surgery too dangerous. Chemo possible, may help, will not cure. May stretch my life to that extra less-than-one-year.

Current symptoms are tendency to fall over. But with rest, two minor drugs and careful walking I'm feeling fine.

Stuck in hospital but will leave tomorrow -- to suit my preference to die at home.

And that's the thing. Dying is definite but I have some choice of where. When, is completely random. I will get weaker. Head to paralysis. Sleep more. Hopefully not fall again. Finally not wake up. Easy as.

If I have to have terminal cancer this is the one to have.

Plenty of time to enjoy, gain sympathy, get embarrassed because I'm still alive.

Clear knowledge of what's happening, time to analyse (sorry) and no pain at all.

Headaches in the last weeks, rated one to three on a one to ten scale. Trivial.

Mental status: no worse than ever... as far as I can tell :-) rambling on is not cancer, it's just me.

Happy because I'll be going home on Monday, the reason doesn't matter, home with Deb is a terrific cheerer-upper... for me, I hope also for deb.

I'm thinking... I'll never save the world. But I'm still doing things to make me more satisfied with my achievements.

Last night I typed the start of my next of a dozen or more short stories. Some are printed not published... my legacy... stories as silly as me.

There's "my app". A brilliant app to draw more tourists to more destinations. Sure, tourism WA refuse to listen but I still try.

Next month is a rogaine. I'm one of the setters, the rogaine will use my app! It will work, unless it's been wiped from the app libraries. 

It still needs a heap of work. If people do use it for the rogaine, if it gains some interest even amazement, I will be thrilled.

See? So much still happening. I will die. My app may be forgotten. Stories may be read then ignored.

My family will do brilliant things, or not, if they don't. I love them all and am immensely proud of them all (while blaming deb for how good they are)

Here and now,cheerful, not happy but contented.

Done enough. Could have done more but I've done something. And if there's an afterlife -- I want to ask Houdini why he has still not reported back to earth.

And the rest... I leave to someone else.

Does anyone want it?

I have tried but abandoned attempts to write my life story. Perhaps I can just say: marrying deb was the best thing I have ever done.

I have a short travel journal by my father, it's fascinating. Perhaps this blog and my own travel journals will, some say, entertain someone but for now they are for my own benefit.tonight's ramble clears my mind. It may not be coherent but now my mind is clearer. I'm depressed but happy. Satisfied with the here and now. Ready to enjoy the shortish term and, after that... not my worry.

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

Zimmer challenges

Walking with a zimmer frame looks so easy... it's  not.

Luckily I had a training course.

First... don't steer like a car. To turn, drag it around.

Second, get the right height. The physio says that my loaner is too short and it is.

The frame is for balance but I lean on it and I'm leaning too low so my shoulders ache.

I've just done a few solo laps of the corridor. First "walking" for a week.

Legs feel strong enough but I need to balance without leaning .ie without resting any weight on the frame.

I'll soon be ready for my home zimmer, which will be the correct height.

I tell you, it may look easy ... but it still needed the training course.

And this morning I had a shower... all by myself.

The nurse suggested sitting so I did. I could stand up for a bit but didn't want to try my luck. So I sat.

In the last week I've had one stagger and two falls, none serious. But the second fall came with no warning at all. That worries me.

I now try to walk, stand, sit, move -- as though I could fall at any time. Always ready to reach support.

In the words of Batman: both hands on the Batwheel, Robin :-)

Closer to home

I get daily doses of Dex. It reduces swelling in the brain and is an "upper" and it kicked in early so I'm wide awake.

Last night I sent an email update to siblings. For myself I like to be clear when someone else is having problems. I was not as clear as I hoped :-) still, it a cheery thing to swap stories with family and friends.

Now I should be writing the next short story that is bubbling through my mind. But my stories require a certain slightly mad frame of mind and absolutely no interruptions. The hospital is waking up and... interruptions will happen.

So.

Deb and the boys will spend the weekend removing trip and fall hazards from our house. I should be home on Monday.

There will be weeks or months of IV treatment mostly based from home.

There is absolutely nothing more that must be done in a hospital.

And that is something to be glad about :-)

Feeling fine-ish

Yes I'm feeling fine... but... I'd rather be home.

I'm getting used to calling for a nurse before I go for a pee!

I'm good with the zimmer frame, the walk is just 3m.

But I remind myself-- the final fall that sent me to hospital was entirely unannounced. So I follow instructions. Well, if I do get out of bed by myself, the alarm shrieks at me. So I'm a good boy :-)

Descent into gloom

It's  just me in an increasingly cold hospital. Okay, I can hear someone else coughing themselves to death but that's  not good company.

I tell the delightful young trainee nurse Rosie that I will soon be a miserable old git, I apologise in advance.

I can feel my mood sinking. I really hoped to be home today, dying or not I want to be home. With Deb.

A woman comes in, I think she's  the OT from earlier, to confirm tomorrow's house safety check. Now I think about it she must be with the loud mouthed palliative care wanker. Strangers came and went all day, they knew who they were, I didn't. 

I'm not allowed out of bed by myself, in fact I feel that it's a sensible precaution.

If I stand up, an alarm goes off, which is a real pain.

Just to cheer myself up I may call a nurse for a cup of tea and a trip to the toilet. Then wrap in every blanket and sleep for a bit.but I'd rather read a book... at home even better.

Lots of visitors

Nurses, OTs, family, doctors, specialists, all visit.

Luckily Deb is there for most of the day. She explains who they are and what they want...

Eg. One bloke talked solidly, I caught a word or two here and there, deb finally clarified.

He's  palliative care. Doc Daphne treats the disease, he tries to ease life around the diseased.

So he will suggest or organise things like handrails in the house. But wait, the OT was talking about that... perhaps she was with him?

Sheesh. What I need is a slow clear introduction. With the fast talkers it just washes over me, I get points and ignore the rest.

If deb is there she gets it all. If it's  just me I wait till I'm told clearly what to do.

Someone today went back to a drug that Daphne mentioned. Beelzebub or similar. It is *not* a cure. It *may* slow down the tumour and also ease some symptoms.

As the surgeon said, the tumour/cancer will still kill me. This drug may delay it...

Ah, it was the palliative bloke who said, it may delay death possibly for months but *not* for years.

We'll  try the drug, despite the usual pages of possible but unlikely side effects

Far more interesting: I've  finally shared a shower with an attractive young woman.

Not as exciting as it sounds when she's  a fully dressed nurse and I'm  a weary old man.but still an an exciting fantasy to tick off my to-do list:-)

Last night I was pleased to think that there's nothing more the hospital can do for me but at least I can now go home. Except that deb is all worried about making the house safe for me.

So, imstuck in hospital for...several more days.

Sigh :-(

late night chaos

Wednesday night I spend a few hours blogging then setting up a swype keyboard on the new tablet.

then drop the new and very slippery tablet on the floor.

I get out of bed to pick it up and while up to go the toilet.

completely forgetting the alarm against moving off the bed and moving away from the bed.

I'm barely half way to the toilet feeling embarrassed listening to two alarms when two nurses arrive.

I m escorted back to bed then ask for a cup of tea.

it's half past two time to get some sleep.so I sleep though it's very cold

sleep till seven thirty which is now

in a cold restless sleep I realise...I may as well check out today because the hospital can do no more for me:-)

I send an enemail to the oncologist easy

then to Deb that will get a more difficult reception...

ah breakfast is here

Gentle lead in

NB. I blame all typos on the new and unfamiliar tablet.

The last few days have been rather exciting.

Monday night I wake up to go to the toilet, a couple of times.

Third time is at 6am. This time I sit up and fall over.

I can't get up. Not even roll over. No way deb could lift my 90kg. She calls an ambulance.

Three ambos lift me then step me downstairs and into an ambulance.

I'm annoyed that we will miss taking Will to his swimming lesson.

I practise my people recognition skills: callan with the ginger beard, cathy with the rather nice crown of frizzy hair, jeanine with diamond ear studs.

They take me, and deb, to RPH emergency.

Hmm... all I remember of ED is eofa? the attractive Irish doctor. And I get a CT scan.

Robbie thinks we are off to Charlie's so, once again, chases his father across town to an ED

I have a ct scan of my head.

Daphne the oncologist is contacted and mark the surgeon. They agree that I need to be in St john's so more ambulance, just me. Deb and Robbie drive and meet me there.

A lot of debate about possible damage due to fall. I did hit my head, and shoulder, on the way down. But barely and I had fallen the day before.

Check in to St john's. And that is Tuesday morning

Someone comes in to my ward. I say, you're not who I thought you were... my first thought was, Robbie then... ah, it's Mark the surgeon. See how bad I am at recognising people? Tho it's 7 or 8 years since I've seen him and he's gained weight.

Mark knows me, has spoken with Daphne, has seen the ct scan. He says that I may not get out of the hospital

I really like Mark. Daphne knows cancer. Mark knows the brain and is realistic and honest.

Another visitor. Is it daphne? No, it's her associate. She talks, I barely understand a word she says. To ask a question I have to interrupt her. Annoying woman.

It's like a stroke. A form of stroke? My left side is weak.

My left hand is a noticeable nuisance,it doesn't feel anything and can't hold anything. Have you ever tried to tear off a sheet of toilet paper with effectively one hand?!

I'm not allowed to walk... eg to the toilet... by myself :-(

I'm exhausted, sleep soundly. Despite the unfamiliar hospital noises. I wake a few times and miss deb :-(

Wednesday: a day of eating, resting, getting an MRI.

The family visit, that's very nice. Oh, do I want the grandchildren to visit? I would enjoy it but, definitely not demanded.

Wednesday,

The dex has done its swelling reduction job, I have a bit more strength in left limbs. Left hand is a bit stronger -- but still can't hold anything.

I walk myself to the toilet despite orders. I call  nurse to guarantee that I can get back to bed.

Exciting news for me and the nurse, forthe first time in a week, my bowels have moved. a number four on the poo scale we agree great news, now I feel better, relieved. My great fear in hospital is constipation. :-)

I write some emails organising the rogaine that I set with Brian. It was cancelled last year due to extreme heat, it will run in November. 

I realise that I've been sitting, typing, getting colder and colder, now I feel rotten.

I put on the warm clothes that deb has brought :-) the room is... cold. Of course I don't complain, ha.

I need a nurse to help get the clothes on, dratted failing motor skills. Now I'm feeling warm and good.

I phone auntie pat, she complains about me trying to outdo her in illness. A lovely lady, now 87 and not at all well.

Mark the surgeon has analysed today's MRI. that's in the post hello next world

I may have finished with hospitals. And that's something to be glad about:-)

Hello next world

That subject line is an old programmer's joke. But relevant.

Mark the brain surgeon came by for a post MRI chat. He offered various options: 

Do nothing and I will die from my growing brain tumour.

Or opt for surgery which will not help at all, the tumour has grown too far, I will still die.

Or try surgery and it's quite likely that I will die under the knife.

Deb and I plan to go home so I can die at home.

Daphne the oncologist may offers drugs to alleviate symptoms. Eg dex which reduces brain swelling, so less

Headaches and some improvement in muscle strength. And then I will die.

The only question is, when

Though a day earlierMark said that I would never leave this hospital... so he's now more optimistic:-)

The previous MrI was perhaps two months ago. At that Tate of growth, another two months to live seems optimistic.

Deb so I expect that I am on a quick trip to the next world. After 48 years of excellent marriage with an excellent  unexpected 8 year bonus at the end :-)

I asked Mark, how will I die?

The tumour is now established in thebrain stem 

some essential Body functions May quit or I may just get more and more paralyzed or the brain stem dies and apparently I will then be dead so not terrific 

I think that I accept it but I can't say that I'm happy ditto Deb, not happy but well that's life and death 

can't think of anything else to say except I seem to have mastered voice dictation to an email and that's something to be glad about I'll probably be back when I get home

Well, I guess I will get home, there's nothing more that the hospital can do.

 but meanwhile over and out from the hospital 

goodbye to both my readers :-)

... Nick

Whoopsie

I'm eating lunch, a tub of yoghurt, I drop the tub.

No slipping, no fumbling, just forget to keep my hand closed.yoghurt spltters well, on floor, clothes, furniture

I wipe up what I can see. I miss max the dog, he would have tracked down and kicked up every speck of spilled yoghurt :-)

Awkward

I slid gently to the floor then could not get up again.

I could barely slide along on my backside.

I lay on the floor for 20 minutes till I could hoist myself onto a low chair. All very awkward :-)

I've been sitting for a while, now I can stand and walk, very carefully but I'll avoid stairs and bending over.

This means no more cups of tea till deb gets home, now that is very awkward.

Monday

Saturday was a beautiful spring day. We went to bold Park,

Deb went for a run, I sat in the car.

After, deb walked me 100m to the toilet, that was far enough for me:-)

I have a continuous headache, generally mild though one morning it woke me too early.! IKeep dropping things. Just small soft things.if I don't think about them I just forget, my gingers relax, it drops.

I have trouble picking things up with finger and thumb. Eg a piece of toast, I can seefinger, thumb, toast but not all at once that's not quite right, but whatever the problem is, it takes concentration, then more concentration to get the toast to my mouth.

I think that I am not really dizzy but have lost more vision so can't clearly see my feet, this makes me feel unsteady.

Ttumour has been growing for months. Now finally it is affecting me. No more worry about possible symptoms, I have them. So I can stop worrying.

In fact, I do feel quite cheerful. Physically rotten but emotionally cheerful. I can still walk, carefully and talk  and think.

Sunday: meant to be a fun run... no way. I stay home, deb stays home in sympathy.

Family are here for dinner, always a pleasure. Two of them did the run, had fun.

I'mSo. I'm Not good but could be worse at least I'm at home :-)

Bad head

It's 4am. I'm downstairs and feeling poorly.

An hour ago I woke with a headache. Sharp enough that I could not get back to sleep. So I came downstairs.

Deb followed, I notice how attractive she is in her nightclothes :-)

Deb gives me panadols and tea then goes back to bed. I hope she can sleep. (I'm okay, I can sleep any time, anywhere, eventually.

I still have a headache but sitting up is better than lying down in bed.

Btw: I'm using a new computer tablet. It's good but has new ways to mistype.

A bad run

After sitting on the couch for a week I need to get out, so I set off around the lake.

I'm okay for a couple of km, then I tire. Not that I'm going fast, barely a slow walk but I feel tired. And unsteady.

I swerve across the track, sometimes almost off the track.

I focus on the RHS of the track, where I can see. That's a bit better but I still swerve. And I'm  getting very tired.

Where there's a seat I sit and rest. And feel wobbly just sitting.

I stand still and feel wobbly. Not falling over but unsteady. Unsteady when standing isn't a great problem, u til I stop for a pee.

I reach the pony club, about 4km round.

I'm unsteady but still upright. So tired I can barely keep moving. If I could, I would stop but, well, I have to get home.

Icould phone deb but I'm  still moving, even it it's  very very slow.

At 7km of an 8km circuit I stop. I can't just stand so I lean on a post.

Three very nice people ask if I'm  okay, not really, I admit. They look after me. Help me sit on the grass, help me stand up again.

Walk with me to the nearest road.

Two stay with me, one rides, push bike, home to fetch a car. 

I phone deb to tell her what's happening. Deb is watching my progress via our location sharing -- and worried at how slow I'm moving.

The man returns in his car, gives me a lift home. Deb is waiting.

The man comments that he would not like to have his own father left needing help. I may look, old but I suspect he looked at deb and thought, daughter :-)

So all is well. Thanks to the kindness of strangers.

Home again. Deb looks after me.

I'm  exhausted and still very unsteady. I am very very careful on stairs. And almost as careful on level floors. In fact I won't  like to move suddenly while sitting down.

I let deb deal with the load of washing that I set going before I went out.

Even before I went out I was having "symptoms"

All day mild headache. We spoke with the cancer doc, I'll  be scanned next week anyway.

Take panadols and see the doc after the scan.

As well as a headache I am all fumble lingered.

I have trouble with shoelaces and buttons.

I'd  say I'm  going back to childhood but I claim i never left it :-)

Hours later: I'm  tired, I walk very carefully, headache is there but very very mild so I'm  not well but not bad.

And on the bright side: when we next see the cancer doc, at last I will have some symptoms to describe.

No more stressful wondering and waiting. And that's  something to be glad about:-)

How do I feel? Rotten

the last few scans show that my brain is growing a new tumour. This is bad.

At first I thought, so cut it out. The more professional opinion is, brain surgery is serious and dangerous. To be used as a last resort -- and only when it begins to affect me. Since then I watch out for "symptoms". Such as falling over. The brain is complex, the tumour is random, no one can predict the symptoms. But headaches are always mentioned.

The cancer doc mentions "stroke", the tumour is on the right so may lose function on the left. This is briliant, mow I regularlyraise both fists in the air, check that bothers rise to the same height. This is the standard stroke test. Easy and, so far it's good.

Butheadaches... I've had a headache, mild, for 2 or 3 weeks

I tell myself that cold weather always gives me a headache, reading, I read a lot, gives an  headache.

All good excuses but I'm still scared.

Sk how am i?

Physical: much as ever but... very versatile tired.

One day we look after the grandkids. I'd enjoy it but can't face a day of non stop fun. I leave it to deb. Poor deb is exhausted.

I sleep, on and off, for several days and feel better but still tired.

Today I rest again, all day. I still have a mild headache.

 Tomorrow I should run again.

So that's physical. Lousy ;-(

Mental: okay, I think, I read, I do crosswords.

Emotional: I'm shit. Miserable, with fits of temper.

Deb calms me, puts up with me. But I upset deb and deb being upset makes me even more miserable.

Not a good week or two.

On the other hand... right now im feeling more cheerful. Lots of rest and sleep and a few things going right. I plan to be cheerful by tomorrow. Still pessimistic but, cheerful.