truth in a fairy tale

Once upon a time there was a famous barber. He was so famous -- and so skilful at his trade -- that the local king would allow only this barber to cut the king's hair. The barber was very proud of this honour. (It was also very good for his business.) Unfortunately there was a major drawback:

The king had his hair cut in a private room. Just the king and the barber. The king... was absolutely bald ! And if the barber ever shared this secret the king would, he told the barber, have the barber's head removed from the barber's shoulders.

Well, the barber was a gossip. Being a gossip was, in those long-ago days, an essential requirement of all barbers. Yet this one piece of marvellous, juicy, absolutely all his own gossip -- could never be mentioned. Oh, the barber was so upset :-(

One of the barber's other clients, a philosopher of the mind, noticed that the barber was very upset. And getting worse. The philosopher tried to help... but the barber would only say, I can't say but I want to say.

The philosopher gave this advice: Go down to the river. Hide amongst the reeds. Whisper your secret so that only the reeds will hear.

Next day, the barber went down to the river, to a very lonely spot on the river bank. He checked, there was no-one else around. The barber knelt down amongst the reeds and hummed a little ditty, to a popular tune: The king wears a wig on the top of his head, Under all of that hair he's as bald as an egg !

At last, the barber had spoken his amazing secret. No-one heard it but at last it had been spoken. The barber felt an enormous relief. He was able to go back to work, with absolutely no worry about this amazing secret. He had satisfied his urge to gossip -- but without risking the loss of his own head.

===

And on Monday (if I remember correctly) I posted my worries to this blog. I immediately felt better, my oh-so-serious (to me :-) worries had finally been spoken aloud. Or, at least, typed. I could relax at last.

Tuesday, I felt very well. Emotionally. Wednesday -- today -- I am free of worry. Sure, the future involves exactly the same likelihood of doom and gloom. But it doesn't drag me down.

Monday, waiting for my next scan was a worry, a threat which really spoilt my day. Today, waiting for my next scan is simply... waiting for my next scan. Good results or bad, it won't help to worry about it.

I had an excellent day -- I was in an excellent mood -- minding the grandson. Which worked well, since Deb had a relapse of her latest cold and needed to take it easy.

Posting to this blog -- does it again :-)

===

Oh, there was more to that barber story. It's forty years since I read it, the facts have faded but the end result is clear:

A wandering musician passed by the river. He made a flute from one of the reeds that had heard the barber's story. Whenever the musician played on the flute -- and he played all over the kingdom -- the reed flute would always play, The king wears a wig on the top of his head, Under all of that hair he's as bald as an egg !

Of course that ending has no relevance to me and my blog. All of my posts are just between me and my keyboard. There are no pesky reeds around here :-)

===

It's not just worries that occupy my mind, that won't let me rest till they are posted. Sometimes it's an idea -- and the way in which I could *express* that idea.

The idea that a worry -- or gossip -- may be dealt with by being shared where it will not (or should not or need not) go any further, is as old as Aesop.

And it still works.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

running for fun !?!

Sunday, Deb & I run in the 12km City to Surf "fun" run... It really is fun :-) Well organised, fine weather, nice for both of us to be running the same course.

We start together. Deb wants to run somewhere behind me... just in case. We both carry a mobile phone. This is the anniversary run after my collapse.

We assemble at a city intersection. Walk forward with the crowd, towards the start. Go ! and we're off. Twenty metres later we pass event toilets, no queues (no surprise). I say, That's for me -- and duck out of the crowd to use a toilet. No, this is not a side-effect of cancer, just my fun run nerves & over-active bladder :-)

Ten minutes later I catch up with Deb. Say hello. Move ahead. After re-starting running I've noticed a change to my running: Yes, I've slowed down -- but my pace is very even.

I finish ten minutes ahead of Deb. She would have finished sooner -- she says -- except that she stopped at every ambulance to make sure that I was not collapsed inside :-)  I think we are both relieved that I have finished. No worries !

A few aches and exhaustion on the rest of Sunday. Largely recovered after a relaxing Monday.

===

Monday is -- as is often the case -- a bad day, emotionally. After the fun & exercise of the weekend, especially having the kids round for Sunday dinner -- Monday is a let down. And Deb is at work.

I do very little in the morning -- read and play on the computer, mostly. Take my mind off feelings of incredible boredom. All of this doing nothing is, actually, a good way to recover from a fun run !

Out for coffee with a friend in the afternoon. Then home to put out the bins for tomorrow's collection. (Is it recycling or green waste this week ? Ah, the challenges of staying at home ! )

By the time Deb gets home I'm feeling better. Partly, of course, because Deb is home :-)

===

Feeling down, feeling bored, that's nothing new. I've been like that for years. The only difference is, now I am reluctant to make long-term plans. So I have to cheer up with the here & now... And the coming scan is having its expected negative effect.

Another couple of weeks -- after the scan results are in -- I'll cheer up again. Or, at least, know why I am unhappy :-)

===

Also, I tend to wake up at about 3am and find that my mind is in high gear -- with trouble getting back to sleep. What usually works is, to turn the electric blanket to roast&bake. As soon as it heats up, I fall asleep. (Getting cold at night is nothing new for me. Not going straight back to sleep is new.)

This morning I just don't feel like relaxing. I get up, have a cup of tea, read a while... and then go back to bed. Heat the electric blanket -- and fall asleep. Being awake for an hour may just be part of the reason why I am so tired all morning :-)

===

Deb has had a couple of months of continuous colds. Now with a nasty cough. And tonight, a noticeable fever. I have had the same colds but -- being super-fit(*) -- have largely shaken off the worst symptoms. Tomorrow is toddler-watch, I hope Deb feels better by then. An early night may help.

(*) Super fit... and I keep warm... and have plenty of time to rest & sleep & recover. Deb just keeps on going.

===

Advertisement. For regular followers of this blog: there is a field at the top of the page for "Email address..." I believe that if you enter you email address there, you will get an email whenever I add a new blog post.

Advertisement. For anyone who comes in late and wonders what happened in the early days: there is an ebook of the first nine months. Easier to read than the blog version, though the blog version is free. Details near the top of the page.

===

Pure coincidence: Phil Collins is on his Not Dead Yet tour. I would have sued him for using my blog name but I found that, even earlier, he published an autobiography called Not Dead Yet. Hmmm... wait a minute... that would have been at about the same time as I started this blog, as a holiday journal. Where's my lawyer ?!

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

dreams of a lazy mollusc

Here's a dream from a few nights' ago, I think it's a subconscious message:

I'm some sort of secret agent in a big city. My job is to seek out and destroy baddies. These baddies are easy to identify: they look evil, hide in dark places and spread rot & destruction to the city around them.

Come on, subconscious, surely you can find more subtle ways of showing my attitude to cancer :-)

Here's a more subtle dream, from last night:

I'm a big white horse. (Yes, I am the horse. Is that a worry ?!) I'm riding after some other … person ? Only trouble is, half the journey is in the air, up amongst the clouds. And I can't fly. So the person I'm following runs across land and flies across the sky. Whenever it's flying time -- I fall through the clouds, down to the ground. But keep on running... and I always keep up.

Blowed if I know why I'm a horse. (Though I do look like a rather nice white horse from World of Warcraft.) I don't really know who or what I'm chasing. But I'm glad that -- no matter what -- I do keep up.

Deep thought for the day: Marie Curie said, "Nothing in life is to be feared. It is only to be understood." Or perhaps, with my dreams, *mis*understood :-)

===

Here's something annoying about my form of cancer: I can never honestly say, "I'm getting better."

I can say, I'm *feeling* better. Yes, I'm feeling, physically, very well. And emotionally, Not too bad. But feeling better is not getting better -- my cancer is incurable. It will be there till it kills me. I refuse to say, I'm *getting* better -- that's just lying, to myself. Oh well.

Having said that, Stuff it ! I'm not getting better but I can always be feeling better. I sometimes wonder why I bother. And yet, "In the midst of life we are in death." The inevitability of death is no reason to stop enjoying life :-)

And according to Christopher Lasch (whoever he is), "Nothing succeeds like the appearance of success." ===

On an even more positive note: according to today's news, lazy people are more successful... in the evolutionary sense.

Okay, this is from the scientific study of molluscs. But it may apply to humans. Lazy molluscs -- using & needing less energy to live -- are better at avoiding species extinction. That is, descendants of the lazy molluscs have a better chance of surviving, to have more lazy descendants.

Good news for our kids !

===

Some friends reminded me, I have not mentioned the rogaine ! Good point... So:

Last weekend was a 24 hour rogaine. (Rogaine ?!  see https://wa.rogaine.asn.au/ ) Deb & I were there.

As a lazy mollusc, I decide that I have walked enough after just five hours. The weather is beautiful, fine & mild, ideal for walking in the bush. The flowers are blooming. The hills are... up & down, we do most of our rogaine on the less steep hills.

At the end of our five hours I am tired. My ankles are starting to ache -- from overuse, not damage. It would be easy to walk further -- and recover over the next week. I say, enough. For two reasons. Most importantly, we have a fun run the next weekend, I don't want to spend the week worrying that we are worn out from the rogaine. Also... it is very nice to stop walking & eat dinner in daylight !

Meals are an essential part of a rogaine. We usually eat after sunset, by moon & fire-light, wondering what will be in the next mouthful that we blindly pick off the plate. What a pleasure to sit, in daylight, enjoying good food and good company !

We drive home as the sun is setting. To the house, the cat... and a warm & comfortable bed.

Our score for the event is... not bad. Quite good for the effort. Another enjoyable weekend. With... okay, after a couple of days recovery... with energy to spare for looking forward to the coming fun run.

Which, by the way, is the anniversary of my collapse. So, assuming I do survive the run -- and I have no doubt that I will -- I will have lived 12 months post-diagnosis. Which will be better than 50% of patients with the same cancer.

And that's something to be glad about :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

more mental than physical

A couple of celebrities (a singer & a golfer) have recently been reported as dying after a "battle" with cancer. After a battle ?! I have this image of guns firing, troops charging, dead bodies to the left and right... So I check the dictionary definition.

Okay, I'm wrong. It's perfectly legit to "battle" a disease. To try hard to do something in spite of very difficult circumstances. With specific mention of battling against a disease. Still...

I don't feel that *I* am in a "battle" against cancer. Perhaps a rather one-sided resistance movement: I accept treatment that has some chance of helping but I am not planning to stuff up my life with desperate last-ditch attempts to stave off the inevitable. I'd rather enjoy what I have... though I am willing to put positive attitude to the test :-)

It's just that "battle" sounds so nasty, so unpleasant... so negative.

If I am in a battle -- it's against myself. There are good days -- and there are bad days. Emotionally, that is. Physically I am -- at present -- fine. Why should I let imminent death spoil my day ? Except for the "imminent", it happens to everyone.

===

On an unrelated topic: doctors and euthanasia. An oncologist -- cancer doctor -- was in the paper the other day, arguing against euthanasia. He works at the hospital where I had my head opened. (And closed :-) I must ask "my" oncologist on her opinion on euthanasia.

Not that I plan on euthanasia for myself but I am a strong supporter of the option. Largely because I see it as a personal choice which should be generally available. If euthanasia is legal, the impact on the person and on their friends and relatives can be managed.

So I don't want to be treated -- for a terminal illness -- by a doctor who is against euthanasia. Just on general principles. And... what other options could they also be refusing to consider ?

===

I write this blog because it makes me feel better. It takes my worries and puts them aside, so I can stop worrying. It's also an easy way to let people know how I am -- if they are interested.

Having posted to this blog, I also feel less need to "talk it over". That is, less need to mention death & dying in general conversation. So how do I feel about death & dying in general conversation ? I could talk about it all day...

I'm happy to talk about my dying of cancer. I'm happy to talk, in fact. Just ask my friends and family. Cancer is one topic on which I have something to say. I remind myself that -- like children & grandchildren & the state of the world & what I would do if I ruled the world & this funny joke that I just read(*) -- I remind myself that not everyone wants to hear it.

Doesn't mean that I'm not willing to talk :-) Anyone gives me a conversational opening, I'll fill it. Oh, if I have time, I will also listen to you...

===

(*) eg: A woman tells her friend, Last night I slept with a Brazilian man. OMG, says her friend, How many is a Brazilian ?!

… rofl

===

This next bit comes (mostly) under the heading of "old age". Still, it's a quiet night and it's relevant to the blog title. So:

I have two forms of dizziness. First, when I wake up, if I stand up too suddenly -- I am dizzy, I take a few seconds to be able to walk straight. Second, when I lie down -- the room spins, if I wasn't lying down I would fall over. Two different forms of dizziness.

The first is due to old age. At first I believed it was low blood pressure, when I stand up it takes a while for the blood to push its way up to my brain. Latest thought is that it is degeneration of the "balance hairs" in my ears. That makes more sense. It's my current theory because scientists have just managed to grow new balance hairs; they seem to think that it is important.

The second form of dizziness is due to too much playing of World of Warcraft. Too bad :-)

And -- while writing about symptoms: I still have pins & needles on the soles of my feet. Minor, regular, a little worse after running. A side-effect of the cancer drugs, I believe. That -- and a less-settled digestion than pre-cancer treatment -- are the only symptoms of anything wrong with me. Only symptoms I can be sure of, anyway.

Some things -- such as dizziness -- are due to age or inactivity. I think. No serious symptoms of cancer. And that's something to be glad about :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

what ! me worry ?

I wonder if my last post sounded gloomy. Well, not to worry: I was *feeling* gloomy. But, not too bad now :-)

I spend the day after that post just chilling out. Not exactly chilling, more occupying my conscious mind so that it does not have time to worry. Eating, sleeping, reading, computing. By the end of the day I am back to normal. Or, perhaps, back to "normal" :-)

I email the oncologist. I ask if either of my upcoming scans could be relevant to blood-in-the-poo syndrome. She emails back. We'll discuss it at our next appointment. I take that to mean, It doesn't worry me... Which is -- sort of -- reassuring.

By the end of Wednesday I am … as ever. Thursday, Deb is at work but I pick her up from the city. We have time for shopping, running, eating takeaways. Friday, the morning is with our grandson, another enjoyable day :-)

Emotional state: had a bad day, now better though still a tad worried. Mostly, I have a new feeling of, Why bother ?! But then, I've had that feeling before, I could just call it laziness ! Physical state: good, as far as visible signs go :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

doom... doom... doom :-(

A couple of weeks ago I did the free government FOBP test: send them two poo samples, they test for blood. Guess what ? Blood in my poo ! Not a definite... but it indicates that I should be tested for polyps -- or even cancer -- in my bowel. Oh dear, and I was planning on skin cancer as my third :-)

Deb says that the odds are still low, that there is cancer. I say, so which would kill me faster, brain or bowel cancer ? A silent moment... then... "Well, we know the answer to that one." Oh well, so nothing new to worry about, really :-)

===

Before my next MRI scan I need a blood test. Today I'm driving close to SJoG Hospital. I park nearby (the nearest free parking) and think, may as well go in and get some blood sucked. Think, it's still a long way to walk, a few hundred metres. Think, No, I'll go to a doctors' surgery which is closer to free parking, closer to home.

Really, though, I just don't want to walk into SJoG again. I've seen enough of it, I may see more of it. Today -- given the choice -- I think I'll avoid it.

===

Apart from that: just another good day :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

ancient history -- finally visited

It's almost a year since I crashed out in the City to Surf fun run. Which raises two points: Another two weeks and I'll be running in the City to Surf fun run and, I have only just looked at my GPS trace for that last run !

Usual practice is: finish a run, go home, download the GPS trace... look at it, try to find something interesting, forget it. This time I skipped straight to, forget it. It just slipped my mind... for some reason :-)

I have finally looked -- and it's interesting:

The red line is the trace. The green overlays are what I remember...

Right at the start (top right of the diagram), I have vague memories of following the crowd. I am ready to go the wrong way -- memories of the standard 12km run, perhaps -- but the crowd goes the other way. There would have been a start banner. Not only do I not see it, I complain (to myself) that there is *no* start banner.

Going downhill near "A" I remember seeing the busport.

At "B" we turn to follow the river. I remember 100m or so of that. Mostly I remember seeing a km marker flag -- and wondering why it was the first on the course. Still blaming the organisers for not putting out standard fun run items. If this happens again, will I realise that the fault is mine and not that of the organisers ?

A long blank area along the river. Somewhere -- possibly back at B -- I am pleased to see that my pace is as fast as I planned. It's a beautiful run, my pace is fast (for me), steady, very consistent. Pity I am not conscious !

It is at C that I realise that I do not know which way we would enter Kings Park. Luckily, I think, I can just follow the other runners. Then -- as I have told several people -- it becomes a moot point because I collapse before entering UWA. Wrong !

Looking at the trace, it seems that I run down by the river. Through UWA. Back under the road. All without knowing, without remembering. And collapse at D... according to the trace.

Yes, my son tells me that a phone call told him, Your father has collapsed behind Currie Hall. So I completely miss the last kilometre of my run !

I then spend 20 minutes getting on the spot first aid, less than two minutes to get to the emergency ward. First I know of that is waking up, being asked if I know where I am (not really). And being given some rather bad news.

I ran 6km in 38 minutes. That has been my target pace -- for several years -- for running a marathon. Okay, this is only the first little bit of a *half* marathon... Still, I feel that I have finally reached my running goal ! Pity it didn't last :-)

===

And in two weeks I will again run the City to Surf. Just the 12km. I do know that I can run the distance, Deb & I did a 12km training run this morning. But will I collapse ?!

Naaahhhh… probably not. But I half wish that my latest MRI scan were before rather than after the run :-)

No, I don't expect to collapse. Still, it's a bit of a worry. So I blog -- get it off my chest -- and stop worrying. Mostly !

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"When it comes to ideas, some people will stop at nothing." … per Ginger Meggs

===

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

footnote

After the previous post -- done in the wee small hours of the morning -- a footnote:

While I was typing Deb was, of course, worried. In the morning when I woke again I reassured her, Nothing wrong, just blogging. Still... Sorry Deb :-(

For me -- it worked :-)  I blogged, posted, unburdened my mind. Then went back to bed, went to sleep, slept soundly for the rest of the night. Now I'm feeling good, better. And no more tired than if I'd spent the rest of the night in restless sleep.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Silence is one great art of conversation." "Good. Let's keep that conversation going." … Ginger Meggs

===

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

Current Status as at 6th August 2018

Current Status as at 6th August 2018

Far too long -- 1st May -- since my last status update !

Background:

I have brain cancer, GBM IV. It is an aggressive and terminal cancer. Two variables are when and where. I also have testicular cancer. Sooo… cancer of both body bits that do my thinking.

The testicular cancer was treated with surgery and radiation. Surgery to remove one ball, radiation to kill the cancer where it had spread into the rest of my body. This cancer is unlikely to recur.

The brain cancer appeared as a tumour, the tumour was removed by surgery then the tumour site dosed with radiation. Cancerous cells will still be floating round in the brain, waiting to grow into fresh tumours. Why still there ? Because the cancerous cells are microscopic, impossible to see. And because it's not safe to just hack or radiate more than the absolute minimum of brain. Chemotherapy -- swallowing regular doses of drugs -- tried to kill off the floating cancer cells.

Disease & treatment:

First symptom was in late August 2017 (starting at this blog post). This was quickly followed by brain surgery & ball tampering. Then radiation + chemo, then heavy chemo. Six months' of chemo is effective, any more has no real effect. ("Effective" is not a cure, it just delays the tumour regrowth.) Chemo stopped in June 2018. At that time, an MRI scan showed no signs of brain tumour -- good news :-) I will be scanned again in September.

When & where:

So the current question is, When will a new tumour be visible ? I'm on a schedule of brain scans every three months. (My motto: Enjoy Life, three months at a time.) And where will it grow ? Yes, right, in my brain... but which part of the brain ? The original tumour -- in my opinion -- was in a very convenient spot: easy to remove, only one major effect (see that first blog post). The risk (as I understand it) is that the next tumour could grow where it cannot easily be removed and where it severely damages the operation on my brain.

Oh, yes, testicular cancer: Treatment so far is expected to have been extremely effective. If it does come back, it can easily be dealt with. So it is trivial... relatively speaking. Sorry, right nut, you gave your all and are sadly missed but... unfortunate but not terminal.

Current physical status:

Good. I have lost fitness but I'm back into running. (Why bother ? Why not ! ) As far as I can tell, the cancer has had only two direct & noticeable effects: the initial collapse during a fun run, and a tendency to numbness on the soles of my feet. (That numbness is a stated side-effect of the chemo drug.) Oh, and a bald patch -- now a thin patch -- of hair where the radiation went in.

Mental status:

As far as I can tell, my mind is as sharp -- and as blunt -- as ever. There's a lot of stuff I need to do, to leave tidy when I die. I pick away at the list, slowly. No rush... yet :-)

Emotional status:

Not the best. I have regular feelings of fear and disbelief. Minor stuff. I tell myself that there's nothing I can do and I'm good at doing nothing so it's no use worrying. Still, I do a bit of tooth grinding at night. And regularly wake up tense. (Tonight I was dozing for several hours. Every so often I would wake up and feel unable to relax. Then sleep, then wake again and feel unable to relax...) This blog allows me to stop thinking and rethinking. This status post will get a lot off my mind, I should then sleep more soundly.

Cause of these effects:

All of the above is due -- I believe -- to cancer. To the disease, its treatment, its incurable & terminal nature. On top of that there are a whole lot of things which are either just me -- or the effects of getting older. If the cancer doesn't do something interesting I may extend the theme to, the process of growing old. Still no need to change the blog name :-)

So that is my current status: stable, feeling fine, undertones of worry.

So far, so good :-)