bad breathing

I spend half a restless night having trouble getting a deep breath.

same thing that took me to hospital

 last week -- but this time I don't have flu on top of it.

I toss and turn, breath as deeply as I can. keeps me awake but what's  all.

eventually get up, puff some ventolin, it helps.

have breakfast, deb goes out for a run, I go back to bed and sleep for an hour.

now feeling tired, a bit breathless, otherwise fine...

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

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after the flu

this morning I wake up and have trouble taking a deep breath. uh oh, I think... but no worries,

a few puffs of ventolin and I'm breathing freely.

I always thought that ventolin is purely a magic cure for asthma. now I understand that it is a soother and clearer of airways -- which relieves symptoms of asthma... and helps breathing after a cold.

... all good to know.

my usual approach to dealing with a cold is to rest, eat, sleep, let

t my body deal with the cold.

the hospital approach is far more active: anti-this, anti-that, oxygen and rest.

home from hospital and the cold (flu) is not just gone -- it is defeated.

yes, I'm tired but feeling quite well (tho with some coughing).

I may dislike being in hospital (more correctly, I dislike being away from home)

... but it was a very effective way to get healthy.

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good question

Visit by the Silver Chain nurse.

Deb asks a question that I would have asked, if I'd thought of it. An excellent question:

The nurse will, Deb suggests, have seen people/ patients actually dying.

So, as the patient gets closer to inevitable death -- what are the signs?

The nurse says:

They, the patient, will spend more and more time sleeping. Not wanting, not able to do anything else.

For me, I'll take that as, staying in bed, no strength to move even to the toilet. or. Perhaps, needing help.

Loss of interest in what's going on.

Deb's mother -- for several weeks before she died -- was less than usual interested in the doings of her grandchildren. (I'll try to memorise the names of ours...)

Loss of interest in food and eating. Which can be a worry to the family, the nurse says.

I'm nowhere near that yet.

Nurse comments are reassuring (to me). I worry that I will fall asleep -- just feeling tired as usual -- and fail to wake up. I prefer the thought that my body/mind will recognise impending death and adapt its attitude to death.

Slow, easy, comfortable but with a bit of warning. (But I bet I'll still be scared :-)

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===

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and ranting: My Three Rs

===

vivid dream?

A few days ago:

I'm up a bit late. Tired enough to soon be getting to bed, Deb already asleep.

You know the way you sometimes see movement out the corner of your eye? That's what I saw. A shadow of a plant pot? No... no plant pot there.

The movement clarified. To a shadowy human-shaped figure.

Which reached out, put a hand right in front of me. A very clear hand, colour and all.

The hand stayed.. then disappeared.

I thought, Hallucinating? Not good!

I think it was a very vivid dream with some dream vs reality confusion.

interesting...

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===

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and ranting: My Three Rs

===

Re: [Not Dead Yet !] New comment on happy at home.

Not really "terrible": 

... If not for the clear threat of death -- I'd call this a great life.

Yes, I'm running out of time -- which we all do, sooner or later. I have a better idea of ... how long.

 But disease progress suits *my* preferences:

Plenty of time to prepare. Well, not prepare, but grow used to expectations.

I enjoy analysing -- and yes, it's fascinating to watch my own mood swings

Am I prepared?

Nope... not really.

But not dying -- when expecting to die -- does help develop an acceptable attitude.

"afraid, yes... but it's *not* the centre of all I think and do.

I'm being well looked after

Physical damage is minor. though the flu etc did do some stroke-like damage... I think it's mostly recovered. I have difficulty still, eg twisting hands and arms to brush my teeth. Luckily I won't need these teeth much longer :-)

And no pain.

===

all good? No !

all bad? Not at all :-)

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===

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===

On Sun, 20 Apr 2025 at 07:16, Colin <noreply-comment@blogger.com> wrote:

Colin has left a new comment on your post "happy at home":

Such a terrible situation

Unsubscribe from comment emails for this blog.



Posted by Colin to Not Dead Yet ! at Apr 20, 2025, 7:16 AM

brain fuzz

Deb has to remind me of the day of the week (Sunday, but who cares, I'm retired.)

===

I do *both* crosswords in the Sunday Times. Okay, I cheat  (search the web for possible words, not looking for the actual answer!) a quarter in the "super" cryptic... but sometimes I can't even get started. Anyway, a good result :-)

===

Here's a negative from being home:

I look at the work Deb etc have done to make home safe (ish:-) for me.

And it reminds me that flu etc is not my *real* problem.

===

Sometimes I think of something to be done, eg finish reading a book and think, better do that by tomorrow... But no, my current plan is for six months more :-) maybe :-)

===

Interesting: My keyboard accuracy is, right now, Learning to focus ? accurate -- not too bad. I hope.

Okay. The above makes sense to me. Should that worry me :-?

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===

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and ranting: My Three Rs

===

Sunday at home

It's great to be home :-)

And yet... there is a small negative (next post).

I'm largely recovered from the flu etc. Still a bit of a wheeze but clearing.

Liberal use of Vicks Vaporub and Ventolin. (The "spacer" is effective.) Plus six or eight tablets that Deb serves up, I don't ask what :-)

A sound night's sleep.

Out for coffee, which involves a 100m walk...

We wear masks, good citizens :-) but hardly cough.

 strange, the walk is easy (using the walking frame) but the start and end, out and back into the car, makes me puff.

I suspect it's the need to twist round.

A relaxing afternoon, for me. Deb prepares Sunday family dinner.

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===

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and ranting: My Three Rs

===

home and happy

it's great to be home. for light dinner then a good night's sleep in our own bed.

lots of tablets, as usual, with breakfast but no constant sniff of oxygen... 

I begin to think more clearly...

I was in hospital to be treated for influenzaA. that worked. I had been thinking, strange, what is being done for brain cancer? nothing, of course.

now feel as tho I'm recovering from a bad cold, as i am.

I have a loud and exciting chest wheeze. sounds to me like a small farmyard. mooing, grunting, baa-ing and occasional Berk Berk of chicken. 

I slept through it. deb says it went all night. still going 

so we are home and open for outings -- not. not until the farmyard wheeze is less obvious.

it's a flu I would have dealt with at home, resting. but had a panic due to the cancer threat to lung operation.

but, now... all good and slowly getting better :-)

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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 :-)

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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!

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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.

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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 :-)

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aargh

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

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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!

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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.

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status today

darling, I have come home to die

nonsense darling you came home yesterdie ha ha :-)

yes, I am home and reasonably happy

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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.

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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

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===

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and ranting: My Three Rs

===

connectedto hospital WiFi at last

...so simple

... once I found it !

idiot :-)

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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.

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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.

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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.

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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:-)

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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.

flu?

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

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or possibly.

perhaps all that I have is a simple chest infection

something that will drown me in phlegm.

oh what a choice ;-)

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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.

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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.

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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 :-)

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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

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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

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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 :-)

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