the Dex is an upper

Over the last week or two I've been asked, a few times, Does it worry me that Dex is a mild "upper" and will stop me from sleeping? No, I reply, If I'm awake then I'm awake -- and there is always something to do while I'm awake. Anyway, I catch up by falling asleep for an hour or two at random times of the day.

This morning, though, did annoy me. But it's not just the Dex keeping me awake.

Four am. I'm awake. A few minor thoughts on my mind. No worries, I get up, go downstairs, follow some ideas on the PC. Except that my eyes are a bit dry -- too much PC use! -- so I don't want to stare too long at the screen.

Dr P had suggested use of a "blue light filter" to soften the blue glare of a PC screen. I search -- and find that Windows 10 has an option to reduce blue light. It's a setting, driven by software, no need to buy an actual filter. Very nice :-) I set the screen display to a milder sunset red, it seems easier on the eyes but it's hard to tell.

Eyes are still dry, slightly stinging. So I just sit and relax. With an extra bonus: It is very pleasant to just sit and relax -- with a view to the outside world -- in the hour or two before dawn. It's a beautiful time of day to be awake. Especially on a fine Spring morning.

Oh, and my taste buds seem to have recovered from whatever (chemo? radiation?) had messed them up. Food was tasting weird. I could not really enjoy the taste of a cup of tea or coffee. This morning: sipping hot tea, enjoying the flavour. At last :-)

===

But it's not just the Dex which keeps me awake!

My body is... or was... a well oiled machine. In particular I could almost guarantee that I would go to the toilet -- to pass poo -- some time mid-morning. This was a nuisance for any fun run which started early! I would hover round the toilets... waiting... till the poo had passed. Then I would be good for the run. And for many hours after.

Now I seem to have shifted my schedule. The main poo of the day seems to be ready before breakfast. Which means that I am a bit restless from my 4am awakening till... well, till the poo has passed. Which is a bit annoying.

On the bright side: far better timing for an early morning fun run! Now, if only the rest of my body were as ready for running... :-)

And now: my stomach tells me it is ready to eat. My taste buds are ready to enjoy. It's definitely time for breakfast.

==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur

        Agamedes Consulting / Problems ? Solved
===

"Give a man an inch and he'll think he's a ruler" … Agent 86

====

Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)

cancer carers' support group

It must have been Sunday 12th when Deb was to go to a cancer carer & sufferer support group picnic. That was the day that I was just home from ED, having been poked, prodded, tested & treated for -- best diagnosis -- inflamed lining of the brain. Deb did not get to the picnic.

Instead, yesterday, she met the group coordinator for coffee. And chat.

The meeting was good value. Deb found it... reassuring? ... to hear about other people whose partners were dying or had died of brain cancer. To hear about the wide variety of how it can happen, of how people deal with it.

The coordinator's husband -- as I understand it -- was younger than me. They had children still living at home. His tumour was placed so that it affected his perception. For example he could look at his hand and not know that it was his hand.

He took himself to the doctor and had to convince the doctor that something serious was wrong. (The doctor probably blamed a virus...)

In comparison, my own lack of symptoms is trivial. And -- after I collapsed -- I had no trouble convincing anyone that my condition was serious.

Both he and I found that the first stage of treatment -- chemoradiotherapy -- was the absolute pits. Though I don't know if his side-effects brought him to ED.

Then he began the one week of chemo, three weeks' of nothing, treatment. That's my next stage, to start in a month or so. For the husband, this stage lasted until a tumour regrew and he died.

Towards the end the husband tried all sorts of alternative treatments. Nothing extreme just, outside regular medicine. Nothing worked. Deb & I agreed, we're not going to grasp at those straws.

I guess there must have been other stories. Other stories of dying and death. All variations on the theme -- better paths and worse -- to the common end.

Deb found it reassuring. She was glad to have had the chance to talk with another woman who has been there, done that. And to talk about others who have also been there, done that.

Me? I still feel no urge to compare notes with other brain cancer sufferers. My only question would be, How did it feel, right at the end? And by the time they can answer that... they are dead and can't answer.

===

Today I had an appointment with Dr P my GP. I needed new referrals to two of my medical "team", for the next stage of treatment. I also updated Dr P on my current situation (just finished chemoradiotherapy) and status (cheerful).

Dr P is the GP who tested my heart, blood, urine and declared me to be extremely healthy... Just before I was found to have terminal cancer. Ah well, can't win 'em all :-)

I mentioned "inflamed dura mater". Dr P did *not* say, Probably a virus. (Sorry, Deb.) In fact she later muttered, Meninges -- protective layers around the brain -- of which the dura mater is one. A doctor who listens! Thank you :-)

===

For the next few weeks I expect to be "recovering", feeling less tired all the time. Perhaps avoiding Emergency Departments for a while. If nothing much happens -- there should be less posts to this blog. (Or the posts will be more rambling & less relevant.)

If posts are rather infrequent -- take that as a good sign...

I will be seeing Dr H at Genesis next week, a final post-radiation check. (Am I still alive?) Then Dr T in mid-December. (What treatment is next?) With a few days away, in between. Oh, and a brain scan then a meeting with the brain surgeon, to admire his handiwork.

Apart from that... expect very little. And if it's all no news then it should mean that all is... good news.

===

And now I'm back on holiday planning, with my three years + one month + a few days horizon. Which will bring us to late 2020. I am including a short holiday in WA, a holiday further from home but still in WA, a week or so in Victoria, a visit to the north island of Japan.

Today I eliminated the possibility of a cruise to Japan. Deb had said that flying high is a risk for people with brain cancer. But a cruise looks even worse. Ugh! the jolly bonhomie :-(  Will we walk the forests of Hokkaido? In my planning -- yes. Deb, however, doubts that we should even go to Japan... But for now -- it is still in the plan. And... it is just a plan.

Planning for three-plus years. With plans to be adjusted as the situation changes... Plus a few other things to be attempted. Mostly being organised from the PC. Some have been waiting for years...

It's all good fun :-)

==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur

        Agamedes Consulting / Problems ? Solved
===

"Give a man an inch and he'll think he's a ruler" … Agent 86

====

Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)

death, taxes and attitude

There are two things which -- so we are told -- we cannot avoid: death and taxes. For some reason this has never worried me.

I paid my first income tax when I was studying at uni. Even then I thought, this is a good deal: I pay a small amount of tax to the government, the government gives me free education. It seemed to be a very good deal -- for me.

Over the years I have maintained that attitude: I pay tax, the government gives it back in various ways. Sometimes as education (I have a lot of that), sometimes as roads, electricity to the door, looking after national parks... all sorts of things which I appreciate. And could not pay for by myself.

I am vaguely upset that, apparently, the richer you are the less tax you pay. I would prefer a transaction tax -- on every single exchange of cash, goods or services -- with no deductions. (After all, why should a business pay less tax just because they are less efficient at managing their own spending?) My real annoyance is the complexity of paying tax... It feels as though we spend more on tax accountants than on the tax itself.

At the basis of this attitude to tax is my attitude to money: I have never really understood its importance. I either have it... or I don't.

Mind you, I always seem to have been "comfortable". As a child I believe we were "poor". But not in poverty, we ate well. As a student -- I have no idea where my money came from! I worked, occasionally. There was money in the bank. Somehow. I paid rent, bought food, didn't buy much else.

But money has no intrinsic attraction. For example, I won't work harder to earn more money. I work because I enjoy the work and the money... is just a bonus.

My attitude to death is much the same: It's there, it will happen. So what? There are plenty of things which I would like to "do before I die" but none of them are essential. For example:

I want to complete the Cradle Mountain trail run. That's 82km in Tasmania, across -- you guessed it -- Cradle Mountain. I've been training towards that for... well... ever since I discovered the joys of trail running, five or so years back. Will I ever do the run?

Even when I set that target I doubted that I would reach it. What if I die before I complete the Cradle Mountain run? (Back then, What if I die was a many-years-in-the-future concept :-) Weellll... If I die before I reach that particular target -- it won't matter. Because I will be dead -- and not caring.

There are lots of things that I would like to do. There are lots of things that I have already done. (Several marathons. Even one ultramarathon.) A holiday to northern Japan is on my planning schedule... A short holiday in WA is already booked.

My death is now closer that expected. My life so far -- despite ups and downs -- looks pretty good from here. I have no interest in a "bucket list". Either I will do things -- or I will not. Which is fine by me :-)

In fact: After a few weeks' of radiation treatment, a minor sign that I am recovering from the side-effects... I did have a quick flash of impending mortality. I'm really going to die! A quick flash -- and it was gone. I'm going to die. So what? So is everyone. I hope my death will be "later"... but it will happen, no matter what I hope.

I've had a good -- good enough! -- life. Now I plan to help Deb (and possibly the kids) get ready for their own lives without me. Now *that* will be really tough for them... or else:-)

aside: I don't have a bucket list. I occasionally consider items for my "fucket list". These are things that people say, I must do this before I die! And I think, fucket, there's no way I'd ever want to do that...

So: Taxes, no worries, I just wish it were a simpler system. Death, inevitable, the timing is unexpected but that can't be helped.

And finally: I'm just a blatant optimist. As evidenced by the occasional dream...

Over the years I have had -- in times of stress -- the dream of falling off a cliff. I believe that it's a standard dream, where you're on the edge of a cliff and the edge starts to collapse, you are about to fall... It may not be a cliff but the concept is there: some uncontrollable collapse which will lead to inevitable death & destruction. A sure sign that the dreamer is seriously worried.

I had one of those dreams a month or two back. I was standing on flat ground. The sand under my feet began to collapse. A hole was opening up, directly under my feet... And here's the thing:

I'm standing over an open hole. The sand that I am standing on is collapsing, there will soon be nothing but air -- and a long drop -- under my feet. Yet I am not falling. Even in the dream I have no fear of actually falling. I am standing on thin air -- watching the ground under my feet... disappearing.

That's the way these dreams go -- for me. I've stepped off the edge of a cliff... but there is no possibility that I will fall, I simply float. I'm standing above a growing hole... but there is no possibility that I will fall, I simply float.

Blind optimism? Absolutely! I recognise that the world -- the real world -- may be collapsing around me. But so what -- I will continue to float above all the danger :-) There is trouble -- serious trouble -- but I will just carry on regardless.

The basis for my attitude to terminal cancer is part of this blind optimism... Trouble? Oh yeah... but it won't worry me. It may *affect* me but it won't worry me. I'll get by okay... or possibly I won't. Either way...

No worries :-)

As one boss once commented, There's Nick, he's happy, he doesn't really know what's going on.

Or perhaps I know. But I don't let it affect me.

Not too much, anyway.

==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur

        Agamedes Consulting / Problems ? Solved
===

"Give a man an inch and he'll think he's a ruler" … Agent 86

====

Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)

my mind is set in its fixed concrete path

This post is about the idée fixe ... which is just me showing off :-) The way that we get an idea -- a fixed idea -- and we will not shift from that idea. Here are some alternate ideas? I may listen but probably not. I will certainly never change my mind. I will never accept that you, too, may have a valid explanation.

Just a few examples. All of the unthinking intransigence of other people, of course. Sure, I may have the occasional idée fixe but mine are always correct. More importantly -- this is *my* blog :-)

===

But first: I've finally had a picture (attached) taken of me in my radiation treatment "mask". All to hold my head still while my brain is zapped. Very flattering, eh?!

===

We're driving to this morning's treatment. It includes a talk with the doc so we are discussing last week's "bad spell".

It was inflammation of a brain lining. Causing fever, pain, exhaustion. Etc. No, inflammation does not cause a fever. It was a virus or bacteria. I was tested for everything possible, there was no infection. You can't test for a virus. Why can't it have been inflammation? Inflammation does not cause fever. Yes it does. Inflammation does not hurt like that. Why do footballers get inflammation? Why does it cause them any concern? They use their muscles... it hurts to play on. So why can't I have had inflammation round the brain? That's where I was operated on, there is swelling inside, the pain was all round the area where the lining goes, the ED doc said it was inflammation, there were no other signs of any infection?! It must have been a virus... and so on.

===

So, doc, do I stop the Temo today or tomorrow? Temo goes with radiation, radiation ends today, so no Temo tomorrow. Brain radiation stops today, I have gut radiation tomorrow, should I take a Temo for the gut radiation? Temo goes with radiation, radiation ends today, so no Temo tomorrow. Hello? Anyone home?

===

And on a related matter but misunderstanding rather than a fixed idea:

Phew! I'm still tired. Last week you were so tired that you could barely keep your eyes open. Yes, I was very, very... very tired. But still, just tired. Today I'm feeling quite well... but still tired.

That's a misunderstanding which is my fault: When I say, Today I'm feeling well, I mean it. But that is "well" compared to the bad times. As in, cheerful, positive, healthy -- but tired. Because "tired" -- for the last few weeks -- has been my default state. Put it this way:

Each day I feel as though *yesterday* I ran a marathon. Sure, today I'm "recovered". Yes, I can walk and talk and think. Perhaps I could even jog a few km... But I would rather not. I would rather rest a bit.

This morning we spent a couple of hours with our grandson. I wandered round, joined in occasionally, spent time sitting & watching. A very pleasant morning :-) But I am "accompanying adult" rather than "involved".

I would rather sit than climb, so Deb is in charge of hand-holding & support on the higher equipment. I'm happy to walk but at no more than a stroll. I would rather be there -- with the boy -- playing! But my default state is, tired. One of the expected side-effects of radiation and drugs, as far as I understand it.

So when I say that I am "well" -- I do mean it. But "well" does not mean that I am anywhere near peak performance level... And that, I hope, will change. Once this treatment is finished.

So today I am definitely "well". And cheerful. But not moving fast. And still ready to fall asleep, often :-)

==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur

        Agamedes Consulting / Problems ? Solved
===

"Give a man an inch and he'll think he's a ruler" … Agent 86

====

Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)

between meals, cramp and sunburn

Shades of "the early days" ! Thoughts churning, keeping me awake, may as well get them into this blog ! So:

My actual "chemotherapy" tablet is Temo-something. I take one a day, before breakfast. Sounds easy?

Original instructions were: take an anti-nausea, wait half an hour, take Temo, wait half an hour, eat breakfast. Easy enough but it means getting up an hour before breakfast, with not much chance of getting to sleep again. Then I dropped the anti-nausea tablet.

So: take a Temo, wait half an hour, eat breakfast. Okay, better.

I re-read the instructions. Mention it to Dr Tsoi (oncologist). The key point is -- I discover -- to swallow the Temo "between meals". Or, "when the stomach is empty". And, Keep the stomach empty for another half hour... or more. Now, I wake up at random times of night. If I'm past half-way between finishing dinner and starting breakfast -- I'll get up, take a Temo, go back to sleep. Which works for me.

Have I correctly interpreted the minor variations in the instructions? Am I satisfying the *intent* of taking Temo on an "empty stomach"? Is water -- or cordial -- okay as part of an empty stomach? It's now 3:30am, I've drunk a lot of water and some cordial. I'll wait a while, take my Temo, finish this post, go back to bed. I hope that is acceptable :-) I do my best.

===

Part of the reason that I am up and about is that I just had a minor -- but not trivial -- cramp.

I wake up, get up, for the usual reason. Decide that there is not enough of the usual reason so I drink a couple of glasses of water. Back to bed.

I notice -- as I'm lying in bed, thinking & dozing -- that my right foot feels just a little bit more tingly than usual. That tingling -- pins & needles across the sole of the foot -- has been with me since the early days of treatment. Wikipedia mentions it but can give no cause. Doctors simply ignore it. Anyway...

The tingling grows. Becomes a cramp across the top of the toes. As far as I know there are no muscles there, it's cramping tendons. The cramp spreads up a small muscle -- perhaps as big as my little finger -- which runs up the side of my shin. Ouch!

I very carefully move my foot, my leg. Ease it so it does not get worse. Am finally able to rub it, sit up, push it the right way... remove the cramp. This is a lot easier than when the much larger calf muscle cramps! It's painful but only 3 on a scale of 1 to 10.

I'm awake now! May as well go downstairs and take my Temo. First, though, several glasses of water, the usual post-cramp treatment. (It seems to work to prevent instant recurrence.) And some cordial because there is only so much water I can drink... Cordial? Does that still count as an "empty stomach"? Hmmm. Okay, I'll wait a few minutes before taking the Temo. I do my best to follow instructions :-)

===

And then there's the sunburn...

A side-effect of radiation treatment is radiation burn. No sunscreen allowed on the top of the head -- it would interfere with radiation treatment -- so I wear a hat in the sun. Yet the tops of my ears are red and peeling. And they are directly under the brim of my hat.

I always suncream the backs of my hands because years ago they lost all pigment. Now the sun burns all the way through the suncream. My cheek bones -- just below the eyes -- are red and peeling. Parts of my skin are like the surface of Mars :-)

Ah well. Just two more days of radiation treatment. I hope. For now. Today, I'm feeling well. And cheerful. Into the future -- I hope to at least avoid the savage ups and downs of the past few weeks!

===

Back to bed. Sleep till breakfast. Then Deb will drop me off for head and gut radiation. After which, well cooked, I will walk home again... Slowly :-)

==== Dr Nick Lethbridge / Consulting Dexitroboper & Flaneur

        Agamedes Consulting / Problems ? Solved
===

"Give a man an inch and he'll think he's a ruler" … Agent 86

====

Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)

Virus-free. www.avast.com

organised... the blue bag... over-organised

I'm an organised sort of person. A place for everything and everything in its place. Plans prepared with options and alternatives for every contingency.

Okay, I'm not much good at *following* a plan. Plan Step One is always. "Be prepared to react and adapt as we go." Still, that's a separate issue.

On my first waking up in ED -- having fallen unconscious in a fun run -- I heard of the difficulty my son had, finding where I was, finding where my wife was, getting to the hospital to see how I was. Within a day, my son had given me a mobile phone. One that actually worked.

I promised myself that I would carry that phone everywhere. Not just for my own purposes. But as reassurance -- and as a thank you -- to my son for providing this now-essential technology. (Thanks, Robbie!)

Then I learnt to catch buses and trains. I'm not allowed to drive, for at least six months. And I realised the difficulties of not being in full control of my transport. Anything that I do not carry with me out of the house -- is not available until I get home again.

So I have organised what I think of and refer to as... the blue bag.

Okay, I've tried for a better name. Emergency kit? Ready kit? Essential items for travel? No, nothing really works. It's a blue bag, I call it the blue bag...

The bag contains items such as my mobile phone. Which is always either in (or by) the bag or tied to my belt so that I can actually reach it and use it. (Tied? Yes. I really do like to know that I will not leave the phone behind :-)

The bag contains my glasses. Or, rather, the glasses case, which holds enough to get me home from anywhere: bus pass, credit card, some notes. And a library card... so I know where it is. As I prepare to leave the house the glasses case will remind me to also add my reading glasses to the blue bag. The blue bag also has my distance glasses... essential for reading bus numbers.

The blue bag contains a light paperback, a small notebook, pen. The plastic folder provided by Genesis to record each visit for treatment. Medicare and health fund cards. There is a variety of less-used plastic cards, just to keep them together. (For example, I want to know where my RAC card is, even if I'm not allowed to drive.) And there is a house key so that I can get inside when I arrive home by myself.

All very organised! I'm rather pleased with the blue bag. In just a couple of minutes I can be reasonably sure that I am carrying everything that I will need for a day out of the house.

Of course I did forget to bring it on one visit to ED... And that was a visit when I was conscious getting there. Ah well... On the bright side, I was able to ask Deb to, Bring the blue bag when you come back!

And yesterday, we were driving home from an orienteering event. Planning to buy fish&chips for dinner. But Deb had been orienteering -- and had not brought her handbag! Not to worry, my credit card is in the blue bag... Which I had brought because it is... the blue bag which must be brought everywhere :-)

===

aside: Yesterday was Deb's birthday. We began with a visit to Deb's sister. Then an enormous icecream followed by a smaller lunch. Orienteering in the afternoon. Fish & chips for dinner. All very enjoyable, with an added bonus: My taste buds -- which play funny-buggers with some food -- accepted all of the icecream and fish and chips that was on offer.

I hope that my taste-buds and gut are settling back to a more normal state of affairs. Certainly my appetite seems to be recovering nicely. Whether that's good or bad :-)

===

There is a down-side to being "well organised":

A week ago I lost the bit of paper with a report of the CT scan of my brain at Charlies. I know that the results were, Shows normal signs of being post-surgery, all else normal. I had scanned the paper so the words were not lost. But where was the paper itself?!

This morning I needed something else that I have not used for a couple of weeks.It took me a while to find -- and the "missing" paper was with it. So, "well organised"? What's that all about?

I gather bits of paper -- and other stuff -- round me where I sit at the dining table. CT scan reports, crosswords in progress, that sort of thing. Each Sunday -- before the family arrive for dinner -- I shift that pile off the table. When everyone is gone, I shift it all back again. It's just one small pile of odds and ends, mostly paper.

Last Sunday I was barely conscious. I didn't clear my stuff off the table. I did notice that it had been cleared. My small pile of stuff had been moved to an obvious spot -- very close to where I sit at the table -- but not a spot where I would normally stack stuff.

It took me a week to look in that obvious spot -- just because it is not a spot that I would have chosen myself!

Sheesh! Man the mighty hunter... If it had moved, I would have seen it :-)

I'm very well organised. When I clear papers off the table I know where I will place them. And when someone else moves the papers -- to a different spot -- I am so well organised that I do not look beyond "my" spots.

Perhaps I'm just a little bit *too* well organised :-)

===

and btw: Today I'm feeling very well ! Tired but well. I don't plan to do anything active... but I am very comfortable doing not very much.

A good day :-)

=======

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

"Give a man an inch and he'll think he's a ruler" … Agent 86

====

Now much more than a clever name for a holiday journal:

 https://notdotdeaddotyet.blogspot.com.au/  :-)

Virus-free. www.avast.com