Thursday, September 30, 2021

at least it's a different hospital

Today we get feedback on my latest CT scan.
It's to be by phone. The surgeon calls, says that he would prefer to see us in person.
At least, we think, he did not say to check immediately  into hospital... and that's something to be glad about.

Ha!

The left side of my brain is well drained.
The right side is still filling with blood.
Do I want it drained? Or will I just take a chance, see if I collapse... Well :-)

So I will be in hospital on Saturday. A different hospital. thank goodness!
I will have fresh drainage works on the right side of my brain.
That's the side which has had surgery.
So -- if I understand correctly -- the surgeon will go in through one of the large previous openings. Tap out the large (relatively) area of skull that is already loose from previous surgery.

Going in through a large hole gives him room to look around. While my head is open he will look around... see if he can find a leak. Perhaps glue it closed... (special surgeons' glue?)

The surgeon seems to think that I will be ready to fight for my freedom within a few days... I certainly hope so.

I comment that it is minor surgery: scalp, skull... suction tube.
The surgeon says that no brain surgery is minor.
I'll try to ignore his realistic opinion...

In.. out... suck it all out... and that's what it's all about :-)
No worries... Not for me, anyway. Not once I'm asleep :-)

And now I don't have to wonder what we can do to fill in the weekend.
And that's something to be glad about :-)



Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Tuesday, September 28, 2021

been there, scanned that

Today is a CT scan. A CT is easy: no canula, just lie down, lie still for five minutes. The CT is to test the level of fluid in my brain. You'd think a dipstick would be even easier.

Deb drops me in Subi with time to spare.
It's a pity that I'm at the wrong place... I'm booked into Duncraig.

So I look harmless and confused (easy enough) and they scan me at Subi.

After the scan I wait a few minutes while a doctor does a quick check of the scan. I'm sitting with four other scannees. It's a good reminder...

These other people are chatting about their various cancers. And various treatments. I could point to my growing collection of scars but really... here & now all my problems are trivial. My only claim to fame is that my cancer is definitely terminal. Meanwhile, I have regularly complained of the side-effects of the various treatments.

This small group has had similar treatments. For longer. With similar side-effects.

I'm not exactly cheered up. But I'm reminded of how lucky I am.
===

Then the doctor says that the scan looks okay, I can go home -- and I do.
It's not official till the brain surgeon says so. But for today I'm allowed home :-)
So I'm healthy for the next few days at least.
And after that... I'll work on making that... *fit* and well :-)

Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

not too bad, really !

I was confused about the date, but: I have now lived just over four years since being diagnosed with GBM4 !

50% of GBM patients are dead within 18 months. I'm now well over on the right side of the Bell curve :-) I've been very lucky with where the tumour appeared.

Four past years says nothing about the future. GBM is still incurable... and terminal. But four years has well and truly justifies our three-plus year planning horizon.

Something to be glad about, eh :-)

Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Monday, September 27, 2021

wisdom of the aged

Go back a few days...

I'm lying in bed. Relaxed. Just thinking...
My thinking reaches a conclusion... and I give myself a stern talking-to.

The thinking starts with a comment from my older brother:
Most of my problems seem to be old age. He's older than me. So, older... Perhaps he knows something :-?

He's absolutely right!

What problems do I have as a result of cancer? Loss of peripheral vision. That's all.

Sure, my eyesight is failing. But... in the 80% where I can see anything -- my eyesight is good... for my age :-)

I'm unfit... but why? Because I've stopped doing anything.
Sure, activity is interrupted by the occasional hospital visit.
Then I use "recovery" as an excuse to do... nothing.

Blood in the brain? Could happen to anyone... of my age... with a brain shrunken by age.
Must I slow down? No!
Carry on with life as normal, says the surgeon... and that's while I still have blood and fluid on the brain.
By the next scan, the blood and fluid may have been absorbed... or not... deal with that after the scan. For now... live life as normal.

The thinking ends. I give myself a stern talking-to: Snap out of it! you drongo! If you're not fit... get fit.
Enjoy life... as the shirt says... three months at a time.

Next day, I "run" round the lake. Through a thunderstorm. Cold. wet. exhausting... and so very enjoyable.

Time to get back to doing... something. Anything.

I don't want to have to give myself another stern talking-to.
... It's so... embarrassing.

Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

building a phobia

I'm dreaming: Standing on a narrow jetty, over water. For various very good reasons, I need to jump off the jetty and into the water. After the jump, I will be able to walk to shore.

No way! No way will I jump into the water. I grab the jetty and hold on for dear life.

Well, fair enough. I have never and never will jump into water. 
Not even in a dream...
I have a very strong fear of water.

But: I wake up... and, still half in the dream, it is very clear what the water represents:
The water is that very cold hospital.
I've been there several times. Had my head opened and my brain carved, twice. It never worried me. In... sleep... wake up, escape. Not much fun, just essential. So, go there. But:

After the last visit... four days of constant cold and cold-induced misery... I now have a strong fear of returning.
Well done, hospital. The hospital air con has given me a brand new phobia.


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Wednesday, September 22, 2021

thank you !

at the childrens party, our granddaughter gives me two things.
first is a warm wet area where she was sitting on my lap :-)
second was conjunctivitis

so deb takes me to the gp, who prescribes eyedrops.
as if! nobody puts something in my eye. not without general anaesthetic.

after getting drops all over my face... deb goes to the internet.
how to give eyedrops to a screaming child?
the method starts with my eyes tightly closed... which is what causes all the problems on the first attempt.
this method -- works. so easy!
thank you... once again... deb :-)



Nick Lethbridge    /    Consulting Dexitroboper
Agamedes Consulting    /   Problems? Solved.
   ===


As Conan says: What does not kill you
does not kill you

rough and tough

It's been a rough and tough week. A bit rough for me -- though nothing serious. And tough for Deb, who has to put up with me.

My brain still floats on fluid -- including blood :-(
Is it getting worse? Well... the only symptoms that we know are... headaches which do not go away.
So of course I get a cold... which gets worse... and which comes with regular headaches. Mumble mumble... how to cause worry, eh.
The headaches don't linger and after a week they have stopped. Unless I worry about them :-(
Another CT scan next week, we'll see what it shows.

In better news, Deb & I went to our grandsons birthday party, at the local swimming pool. All 20 of his classmates were there. That was easy, they just ran riot at the other end of the pool.

At the very shallow end, Deb and I kept our toddler granddaughter amused. Deb would guide the girl up the steps of a very low slide. I would wait for her at the bottom then point the girl back towards Deb.
An hour of this... and I am totally exhausted.
My final task is to sit with the girl on my lap while kids all around us are being refuelled with various unhealthy snacks.
It's great fun :-) I then sleep for the next several days.
Which works well as my cold gets worse.

My preferred treatment for any illness is to sleep through it. Which I do.
Deb -- who has several times had to take me, urgently, to hospital or ED -- worries that I am in fact not able to wake up.

Today -- after sleeping through a lot of the day -- I feel a lot better.
The sun is shining. I feel the urge to get out in the open air.
Well, okay, best I can manage is to open the window and look out. That, however, is part of a major mood improvement :-)


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Thursday, September 16, 2021

still floating

Tuesday I have a CT scan of my head. A CT scan is easy: quite fast, no needles.

Today the surgeon phones. The scan shows some fluid still, on the right-hand side. The left seems to be suitably drained. The fluid shows as brain fluid plus some blood. Good enough, I say :-?

How delicate is my brain? Not -- says the surgeon -- a post-operation problem. Just getting older: My brain is shrinking (lol) so there's room to rattle. No need to be extra careful, he says... just live a normal life.
Running? No worries.

But watch for symptoms. Most likely is... a headache which does not go away.

Perhaps, I think, I should also worry if my eyes turn red. Especially if they also glow in the dark... Oh, wait... no... that was a horror story I was reading.

I'll have another CT scan in 2 to 3 weeks. Then speak again with the surgeon. Till then-- at least till then --  no worries :-)

btw, "floating": My first car was a Mini. The Mini suspension "floated on fluid. Similar system to the brain, where brain fluid is essential. Only the blood is unwanted. As far as I understand it, anyway...


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Wednesday, September 15, 2021

which hospital

I seem to have visited -- and formed opinions on -- too many hospitals. Here are a few... memories and opinions.

SCGH ED, ICU, a bed in a corridor, the PET scan service:
All excellent. Caring staff, all extremely competent.

The Mount Hospital:
It's a fancy hotel. On a quick visit I quickly decided that I would not trust them to provide "hospital" services.

St Annes:
Old style. It feels like a real hospital. I was there for surgery and immediately felt that their hospital services could be trusted.

St John of God Subiaco.
The staff are all very caring. On my first stay I decided that nurses were hired to a budget. Knowledge and competence was matched to job requirements. One nurse, for example, was hired for her special skill of staying awake through a night shift.
On my latest stay the nurses -- all staff -- were terrific. The rooms -- ICU and ward -- were cold. It's winter. They may as well have left all the windows open.

The building is designed as on office block. I love the ice-block idea -- but there is no thermostat in the room.

It's interesting: I stress over surgery but can accept it. I have a lot of faith in the surgeon. My latest brain drain in in SJoG has left me with an actual fear of having to go there again.



Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Thursday, September 9, 2021

change of mood

The last few nights, I sleep badly.

Background info:

I don't enjoy cold weather. Sure, I can dress warmly if I want to go outside. Then I will walk... warm up... get hot... and get irritable.
Alternatively I can wear too little... stay cool... I will feel miserable.

Years ago, I chose the cold and miserable option. It's a lot easier on Deb :-)

In my recent hospital stay I had no choice: the place is cold. I was permanently cold and therefore miserable.

At home there are choices. I can wear more than a hospital gown. I can use an electric blanket. I can warm one room, the room I am in.
Choices. So I choose to be warm.

This choice comes with a problem:

I am warm. I am no longer miserable... I switch to irritation.

I switch all the way to anger.
Anger at the awful hospital where I was permanently cold.

I was cold in bed. Extra blankets gave me a small self-warmed cocoon. Outside my cocoon of blankets was a sub-zero room.

Nurses offered to walk me to the shower. I refused. No way would I walk through that cold room to the shower.

Food appeared. I stayed in my cocoon and looked out at the tray of food. Too cold to reach out to try to eat.

Oh, I did nibble on one meal. Something made from farmers boot leather, as far as I could tell.

I don't actually know how long I was in hospital. I barely ate, I was too cold. I lay in bed clenching by bowels, no way I would cross the floor to the toilet.

There is no way to warm the room. The whole hospital is set to freeze. They may as well have left the doors and windows open.

In case I manage to get enough blankets -- there is an air con vent in the ceiling. Placed where it can blow cold air directly onto my bed.

It's suggested that I would be even less happy if a surgeon was so warm that a scalpel slipped from his sweaty fingers.
Well. one, I thought a surgeon would wear non-slip gloves.
And two: What if the surgeon -- as I did -- started to shiver. Violent and unstoppable whole-body shivering. I could not tap a keyboard. I doubt that a shivering surgeon would be safe with a scalpel.

I've worked in offices with a similar approach to air con.

Add a degree to the temperature and it costs a heap in energy bills. So, let the underlings -- and patients -- shiver.
The signs of too-cold air con are, that workers have their portable electric heaters under the desk.

When staff are more practical -- such as an engineering office -- you will see sheets of cardboard suck across the air con vents to stop the cold wind.

I had no portable heater. No cardboard, no duct tape. Next time I'll be better prepared.

So I spent several miserable days in hospital. Now I am home. Happy. Able to get warm. Unable to sleep nights, as anger bubbles up.

Oh. One of the first things I did when I arrived home was to send an email to the surgeon: If (when) he again has to operate on me. Do not do it in that same hospital.
===

On a slightly different topic:

To get out of that hospital I had to sign something, admitting that I left "against medical advice".

I was happy to sign, just to get out.

As far as I remember -- I received no medical advice.

The surgeon did pass by. I remember that. I don't know what he said. I spent my time between asleep and unconscious.

His off-sider visited, once. I remember that visit because I asked her, what is your role. I think she said, RMO. Eh? Resident medical officer, she "explained". I was no wiser.

"Resident" as I understand it, is one of the stages of incompetence that a doctor passes through on the way to becoming a real doctor.
So what is her actual role. I thought a resident doctor is part of a hospital. This one seems to come with the surgeon. So who is she and why did she visit?

When I escaped I asked, when will... a doctor.. come by?
About now, I'm told. Where are they? No idea, I'm told.

Surgeons and "RMOs" operate their own schedules. Without, it appears, telling anyone else. Neither nurses nor those lowly creatures, the patients.

Yes, I have a lot of anger.
Now it's documented. Out of my system.
I hope I can now sleep at night.


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Monday, September 6, 2021

back to normal, near enough

Aaaaahhh... home again :-) So nice :-) 

Sunday is orienteering... Deb will not allow me to even walk a short course with her. We really need to ask the surgeon how delicate my brain really is.
So I walk about 100m. Sit, it's a pleasantly warm day. Socialise. (Orienteers really are nice people.) I Enjoy myself immensely.
And have been exhausted ever since!

Post-surgery is minimal. One pill twice daily. 
The pill is said to prevent fits It may also prevent elephants. I have had no fits and seen no elephants, double success.
The pill may also make me drowsy... Oh yes, it certainly does that.

Apart from that: The surgery involved two holes drilled in the skull to allow fluid (blood and normal brain fluid) to drain. Very minor compared to previous surgery.

So minor that I can now turn, bend, whatever without getting dizzy. A distinct benefit of *not* having the surgeon stick his finger in my brain and twirl it round :-)

I'm still tired. Somewhat weak (a result of doing a lot of what I do best: nothing :-)

Sunday -- Fathers Day -- I play "school" with our grandson. I'm not sure of the rules, the boy is happy to tell me. I must admit -- it's the highlight of my week :-)

Two bandages come off the top of my head. What I thought were two small holes in the skull have left 5cm scars. So it's back to wearing a hat rather than scaring small children :-) And to avoid scaring me -- I avoid looking in mirrors.

So life is back to normal... near-normal. Just a lot slower :-)
But cheerful. At least for a couple of weeks. Then I'll be scanned. To see if the brain is leaking again. Till then: all good :-)


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

Friday, September 3, 2021

what to say

It's hard enough -- I imagine -- for people to know what to say to Deb while I am still alive.

When I am dead, this (shamelessly stolen from The Onion) may help:
Don't worry, Deb. He's Heaven's problem now.

rofl


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)

do dreams have meaning?

I wake up from a very complicated dream.

Some of the dream is clearly significant. Some is... just weird.

I am lying, awake, in a hotel or motel.

Next to me is an attractive woman.
So far, I understand the dream. I know where I want it to go.

Except that the woman is fully dressed. (Jeans and a pretty white top.
She is also fast asleep.

I don't know the woman. More, I know that she is a stranger. We have only just met.
She is in my room to make a phone call. She phoned, to leave a message but no-one answered.
Let's call this woman Ms Visitor.

Possible meaning:

A strange woman in my dream is a sure sign that I am in a happy and positive mood.
Having her dressed (and asleep) is a sign that my dreaming mind is more realistic than my waking fantasy mind :-)

Ms Visitor is fast asleep. So I try the call again, using the re-dial last number phone function.

Definitely a dream. There is no way I could know how to use such a function.

more meaning: Yes, I have a lot of trouble using my mobile phone. My dreaming mind seems to think that the phone is still useful.

In the dream my re-dial works and the call is answered: "Hello, somewhere Pre-Primary".

Somehow I know that the school is in NZ. My call is answered by Ms Teacher, working late at night, preparing for the next day's lessons.

I apologise to Ms Teacher and explain that I am calling to leave a message-- for Mr Boyfriend -- on behalf of Ms Visitor.

By this time Ms Visitor has disappeared. I don't know her name. I don't know the name of Mr Boyfriend... all very embarrassing. Makes it hard to leave a message.

Luckily Ms Teacher teaches very little children. She is able to make sense of what I am saying. She even works out the people involved. Oh yes, she says, I can give a message from Ms Visitor to Mr Boyfriend when he gets back from his holiday.

The message is simple: Hello, hope you are well, see you soon...

Is there hidden meaning? because:

I don't explain all of the situation to Ms Teacher.
Mr Boyfriend has died on his holiday. I volunteered to pass on the message, since I am also dead, so may see him to give him the message.
I briefly enjoy the thought of the confusion, later, when Visitor and Teacher discover that I spoke to Teacher after I died :-)

The dream ends. I am very happy; I have helped Visitor by passing on the message

A strange dream... very complicated... and yet: very satisfying.

I wake up, happy.
I'm sure it all means ... something :-)


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
===

Question authority. Don't expect to like the answer." ... per Ginger Meggs

===

Dying for you to read my blog, at https://notdotdeaddotyet.blogspot.com/ :-)