Saturday, February 22, 2020

scan plan

For the last couple of weeks I am getting a date for my next scans. Two scans, a standard-but-sooner MRI and a "spectroscopy" for better detail of the suspect area. Why does it take a couple of weeks to set a date?

The plan was set before Christmas. After the break I phone the scan company. Only to be told, no, we don't even have a spectroscopy scanner. So it's back to the cancer doc.

Back to Charlies, is the plan. A public hospital with all the best scanners.

A week later I ask, how's it going? Scan request is being assessed, I'm told.

Another week and... they are very busy, I'm not likely to get a scan before we go away. I suggest (after a suggestion to me) that I settle for a standard MRI scan.

There's a phone call, it's the company with no scanner, I'm confused. But... I check my emails... There's an email from the oncologist saying, the scan company will phone. The scan company phoned within a minute of the email being sent. Very efficient!

So I'm now booked in for a scan. Just an MRI. On a Tuesday evening with an oncology appointment on Thursday.  I hope that leaves enough time for scan interpretation, I hint. I'll phone to remind them of the need for fast interpretation, replies the oncology secretary. So it's all happening... Well, not "all" but the essential MRI is happening. After a couple of weeks' of confusion.
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So am I worried? Not really. I'm too distracted...

I go to the dentist. The second annual checkup since I told him, No more need for annual checkups :-) This time, he finds decay. I'm booked in for after our NZ trip.

Next day, an entire tooth snaps off. An entire tooth-covered-by-crown, that is. Not a tooth that I will miss, I intend to get it smoothed off and perhaps levelled -- level with the gum. I make an "emergency" appointment with a different dentist: same practice, not my usual.

There's decay, it should come out, he says. Okay, get out the pliers, I reply. Any medical conditions I should be aware of? he asks. So I tell him...

The dentist blanches, backs off, puts down the pliers. Poor bloke, he's upset, not quite sure what to say. Except that pulling a tooth is no longer the obvious solution. It seems that some cancer treatments cause slow-healing in bones; my jaw may take too long to heal. I don't recognise the drugs that he names, mine have been a small but select set, I accept that extraction is no longer advisable.

Back to plan A: he cleans out the tooth (a half root canal, he says), removes decay, fills the space and puts a smooth top on it. At gum level.

It's a short-term fix, I'll be back. Later.

In other dramas: my glasses snap. It's my PC glasses, for reading a screen at a reasonable distance away. (It works well.) The frames are very light plastic... and they snapped. The optician puts the lenses back into a same-model frame, no worries. Except that I now worry that the lightweight frames are too lightweight.

We take the car in for service and are told, one tyre has a nail in it. Near the edge of the tread, where it needs a specialist to fix. No worries, I book in to a tyre specialist for the next day. It's easy but involves me sitting, reading, waiting for an hour. It's a screw. In the tyre, that is (nudge nudge). Now removed and patched.

After the car service the car rides as though the tyres were rocks. I don't know what pressure they set but it is far too hard. After the tyre repair the tyres are less rocky, the ride is a lot smoother. So that's good :-)
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And a few dreams... scraps of dreams, just the bits that I remember:

Dream one: a series of scenes set months or years apart, as political climate changes. There are two important books in the household, discussing important ideas but I don't know what the ideas are. One book is always on display but in a locked bookcase, we are allowed to own it but not read it. The other book is hidden, more and more carefully as the political situation changes. It ends up buried in the garden.

It's all about ideas and how some ideas are acceptable in one political climate but dangerous in others. I can relate that to the here-and-now but have no idea why I would dream about it.

Dream two: there is some sort of armageddon, I think it's an alien invasion. Humans flee, group together, survive. In the new post-invasion society various political views are accepted and trialled. Until the various political groups break apart and start warring against each other.

Humans, disagreements and war, eh. I can see the problem, just not sure why I'd bother to dream about it.

Dream three: our house is computer controlled. I come home, walk to the front door and say, Hello House, let me in. In a deep and scary voice the house replies, No.

What, me worried by autonomous technology? Oh yes, I'm a dyed-in-the-wool Luddite.
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Back to the week of teeth, glasses, tyre drama: I no longer worry about the results of the next scan. At least, I no longer worry excessively.

Yes, I'm a bit tense. Need to distract myself with books and computers.  But no worse than for previous scans -- despite starting from a position of, there *is* a blotch on my brain. Why should I worry about a brain blotch -- there is so much other drama that a blotch is just... yet another drama.
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Interesting aside: I can worry about dying but not about being dead. Being dead is -- in my (lack of) belief just... nothing. Dead equals non-existence equals not there to worry. I worry about the dying process but accept that, when it's done, I will no longer be worrying. (As I may have said before: if I'm wrong I'll chase up Houdini and tell him how to phone home.)

What I do worry about often hits me as I am going to bed. I look at Deb and worry about how she will cope when I am dead. Perhaps my death will affect the world. It will certainly affect Deb.

I worry about it now because -- I will not be worrying about it when I am dead :-)


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
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"Don't waste your time looking back on what you have lost. Move on, life is not meant to be travelled backwards."

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



Thursday, February 13, 2020

never rains but...

I'm still waiting to get the date for my next scan. I expect bad news (though I'm still hopeful) so I should be extra stressed. But I'm not :-)

It would be about two years since I told the dentist, Yah boo sucks take me off your automatic recall list. This Tuesday I'm at the dentist for my second annual check since then. Bad news that is good :-)

But worn extra bad news, I need a filling. I'll have it done when we get back from NZ.

Next day... a tooth snaps off. A canine. It was mostly crown and snapped off at the base. So today I'm back at the dentist. The tooth is now jagged, level with the gum -- and decayed. I'm given the choice: rip it out today ... or later.

It's a different dentist, we don't know each other. He asks, Before I get out the pliers, are there any medical conditions I should know about? Brain cancer, I say. Oh, he says and puts down the pliers. Looking, I must say, a bit dismayed.

It seems that some anti-cancer drugs cause slow bone healing. I didn't recognise the drug names he quoted but the dentist would not extract the tooth... just in case. So he did a "half root canal", scrapped out the core, packed it with something anti-infection and put a cap on it.

It'll last... a while. May start to ache... in weeks or months or years. For now it's effectively a gap in my teeth. No trouble at all, so far, after a hearty dinner :-)

I'm due back at the dentist for that other filling, in four weeks or so. I will probably get the full root canal treatment but leave it level with the gum. No need for a massive, long term fix :-)
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I've developed a tendency to blame everything on cancer treatment. (The cancer itself is almost benign, so far.)

My digestion was affected by chemo, it has recovered but is still... different. I'm unfit because of all the time when treatment left me with no time -- or no inclination -- to exercise. Any headache -- they are rare and very minor -- I worry that it's caused by a big tumour. Second bald patch, caused by radiation. Etc.

Fitness is improving. Health is good. (Except for, you know...) I still blame cancer and treatment... even where the more obvious cause is age.

So this tooth... was probably weakened by radiation. Probably nonsense but what if it's true? Will my other teeth start to crumble?!

That's the trouble with having one major disease: I blame it for every little problem. And worry that every little problem is a bad sign, that the cancer is getting worse.
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I should also mention that I'm getting by on four or five hours sleep for a lot of nights, spending many late nights attempting to write Kotlin code. (Definite signs that I am learning... slowly.) Even more tiring with a grandson staying over for one night. Great fun but tiring :-)

So I'm tired. Needing drill and fill on my teeth. Still confused by Kotlin.

Which has stopped me worrying about scan results. Still concerned. Still pessimistic (hoping to be wrong :-) but not worrying.

So it's a lot of bad news and I'm feeling fine :-)





Nick Lethbridge  /  consulting dexitroboper
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"I took out a loan to pay for an exorcism. If I don't pay it back, I'm going to get repossessed." … Olaf Falafel
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Tuesday, February 11, 2020

holiday planning

Deb & I have had some "interesting" holidays... where things go wrong on the holiday. Our next holiday -- to NZ -- is the first that I remember where everything is going wrong even before we leave.

The first holiday activity -- the reason for going at all -- is to walk the Routeburn Track.

First, we were to travel with Deb's sister. She has had to pull out, so loses 50% of the cost of the walk. Two days after she cancelled -- well, I cancelled for her, I'm the trip organiser -- the Routeburn Track is closed. All walks cancelled for February. That's okay, we're walking in March. But...

Will the Track be open again in March? Noone knows. So, for those who don't like uncertainty, the Track walk company are offering 100% refunds for walkers who would walk till just after our dates.

The sister thinks, Aha! 100% refund, that's lucky. Too late, 50% is already the done deal. I guess I'll have to tell her... (If you're reading this: I'll tell you soon. Sorry :-(

So, still Deb & me to walk.

Sunday, we (Deb & I) have a test walk, Eagle Trail with backpacks. Deb is skipping, whistling, enjoying a pleasant stroll in the bush. I'm tired, complaining, vowing to never walk again. I could probably walk each day of the Track -- with no option other than spending the rest of my life in the NZ forest -- but I don't want to.

Deb seems to take the hint. She says, cancel the walk. I'm disappointed but only because Deb is disappointed.

What about the rest of the trip? There is some good news...

We need accommodation before and after the walk. I booked a nice 2br unit for the three of us... far too big for just two of us. And expensive. The good news: Thanks to other walkers cancelling walks, there is now accommodation in Queenstown.

We can stay in a "suite" for two at a price which makes me think, we can skip the walk and stay in Queenstown, an easy change to the plan. Deb finds lots of things to do in Queenstown... most of which are walks in the forest. But without backpacks :-)

But is it too much to spend six nights in Queenstown? We may cancel the first night or two. So I look at flights.

Interesting... Fly just one day later and the flights are less expensive. But too late for the walk. Oh, look, the day we are booked -- and paid -- to fly is the most expensive for the month. Oh bah, humbug.

I've just sent an email to cancel the walk. I'm actually relieved. Tomorrow I'll look at any other changes. I may just take the easy option, Queenstown for six nights. Deb will find plenty for us to do :-)


Dr Nick Lethbridge / Consulting Dexitroboper
...        Agamedes Consulting / Problems ? Solved
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"Volunteers do not necessarily have the time; they just have the heart" … Elizabeth Andrew

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



Saturday, February 8, 2020

life's little ups and downs

Can't deny it, I'm feeling a bit gloomy.

First up, there's a big difference between six months and six weeks. There's not much time to ignore the next scan when the next scan is just six weeks away.

Aside but related: waiting to get an actual date for the next scan. I'm starting to think, Has the date been set? why have I not heard? I phone the company that will do the scan. Except that they won't.

I phone. The doctor who knows what's what is just back from holidays, that could explain the delay. But: No, we don't have the equipment for that specialist scan, I'm told. I'll speak to your doctor, I'm told. You'll need to go to Charlie's, I'm told.

Okay, no worries, I like Charlie's, the public hospital. I have good memories of previous visits. Okay, good but hazy memories, I spent a lot of time unconscious at Charlie's.

A few days later I call Charlie's. They know me but have no request for a scan.

I phone the cancer doc. Yes, the "doctor back from holidays" has been in touch. All is being arranged. Which is good.

It would be better -- when doctor talks to doctor -- if they remembered to pass a message to the patient.
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So I'm waiting on scans, a standard MRI plus another which will show better detail of the area of the blotch on my brain. The blotch may turn out to be "radiation necrosis", a patch of brain killed by the radiation treatment. That would be good news.

I don't really believe that it's necrosis.

The PET scan shows extra sugar takeup in that area, that's a sign of extra-active cells... ie a cancerous tumour. To me, the blotch is cancer. Dead brain is a nice thought but wishful thinking. I'll be glad to be proven wrong... but...

I was hoping for six months of business as usual. Instead, it's six weeks of stress. Oh well. Can't deny it, I'm feeling a bit gloomy.
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I think I've made the final arrangements for our holiday. It will happen after scan results and before any necessary treatment. Sounds good :-)

Except that our holiday is a walk in New Zealand. On a Track which has just been flooded, washed away, subjected to natural disaster. All walks cancelled for the next couple of weeks. Not sure if our own walk will be able to go ahead.
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On the other hand... my ability to code in Kotlin has gone from zero, all the way up to... miniscule. Which is far better than zero :-)



Nick Lethbridge  /  consulting dexitroboper
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"I took out a loan to pay for an exorcism. If I don't pay it back, I'm going to get repossessed." … Olaf Falafel
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Wednesday, January 29, 2020

itchy foot

Almost midnight, I'm sitting at the PC translating Russian notes to English, on Fibonacci series and biquadratic equations... Yep, still learning Kotlin coding :-)

My feet start to feel funny. Not painful, not tingling, just... funny. Funny in a way that is clearly a variation on post-chemo sole tingling.

To be exact: soles of both feet feel funny, left hardly at all, right quite noticeable. On the right foot the feeling extends across the bottom of my toes.

I get ready for bed, the feeling is less noticeable. Get into bed -- and it's back... but different.

Again, the left foot is hardly affected. The right foot is itchy, extremely itchy. All across the sole, also across most of the toes. I rub one foot against the other -- hard -- but it doesn't help.

I curl up (I'm lying in bed) to grab my foot in my hand... and squeeze. It seems to work! The itching fades, I fall asleep.

Weird.
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During the night I wake up from some weird dreams. As I wake up I think, That was weird... but fun :-) Then I forget what the dreams were about. All I remember is, Weird but fun.



Nick Lethbridge  /  consulting dexitroboper
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"I took out a loan to pay for an exorcism. If I don't pay it back, I'm going to get repossessed." … Olaf Falafel
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Friday, January 24, 2020

on hold

So now I'm on hold. Nothing certain for the next six weeks.

The PET scan shows high sugar take-up in the blotch area. This -- to me -- gives a high probability to it being a new tumour. The possibility that the blotch is radiation necrosis is a nice thought but I'm not depending on it. The radiation specialist supports the idea so I classify its odds as being better than "wishful thinking".

Essentially I'm "between scans" again but with the extra negative implications of "the blotch". So it's business as usual: enjoying life... six weeks at a time :-)

Speaking of enjoying life: today Deb and I look after our grandson for several hours. He runs round non-stop for several hours then seems to fall asleep as we drive him home. Then wakes up as soon as he's home.. though he has, at least, slowed down.

While grandson runs riot, Deb walks round with him, keeping him company. Deb is sunburnt, tired, now asleep. I sat and watch the bags, I am now tired and ready for bed. An exhausting -- and very enjoyable -- day for everyone :-)



Nick Lethbridge  /  consulting dexitroboper
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"I took out a loan to pay for an exorcism. If I don't pay it back, I'm going to get repossessed." … Olaf Falafel
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Thursday, January 23, 2020

It's ba-a-aack... maybe!

Okay, so there's something showing on my brain MRI. Confirmed by signs of lots of cell activity as shown on my PET. A blotch on the brain... actively absorbing sugar... sounds like a new tumour.

Or possibly necrosis, says the doc. I didn't hear that, Deb did. That's why Deb goes with me to see the doc. Necrosis? Dead bit of brain? Lots to learn today...

We go home (via weekly shopping). A bit later there's an email from the doc. She has contacted the radiation specialist. He prefers the necrosis option. That is (I think) a dead area, a common after-effect of radiation. Where was it at the last scan?!

Post radiation necrosis -- we find out from another source -- may appear up to 20 years after radiation. (We have some good sources of good information!) So a bit of dead brain is, indeed, a possible explanation.

The doc also said that she'd talk to the brain surgeon. The one who's been in my head before, he knows the area. The doc was going to talk with the surgeon because today's blotch is in a slightly different area. In an area which would be more difficult to access. I'm not sure if she has yet spoken to the surgeon. No rush, because...

In the hope that this new blotch is necrosis, next step is another scan. An MRI with more: "spectroscopy". Whatever that is, it will give a better picture of "the lesion". That's what the doc calls it. I prefer "blotch" :-)

The new scan will be in six weeks... If it's a tumour, that will give it time to grow. More evidence, one way or another. At the moment it is -- if a tumour -- still a lot smaller than the original tumour.

The blotch is in a difficult area but in a part of the brain which is not used for anything important, says the doc. That could be any part of my brain, I think. As a more sensible view:

It may not be in the "thinking" part of my brain. It's on the surface of a catchment area for blood flowing through the brain. So if it's a growing tumour it could block drainage from the brain. Leading to... exploding head syndrome... or something. I lost track of the technical details.

So. The tumour may be back. Or I may have an area of necrosis, dead brain. Or dead lining of the brain. More info in six weeks, after the next scan. Either way, noone expects me to die within the next six weeks, so that's good :-)

But it does mess up holiday plans :-( Whether I'm dead or alive, six weeks from now is when we should be going to NZ. If the scan is sooner I'll have time to get last-minute plane tickets. Everything that can be cancelled is already booked, we'll lose something but not the lot.

It all depends on a, the timing of the scan. b, the result of the scan. And c, if the cancer is back, what will happen next... Which appears to be a choice between surgery and radiation. Whoopee :-)

But that's in the future. For now, I'm just waiting. 

Though I may need a new motto on my shirt: change "enjoy life, three months at a time", to "... six weeks at a time".




Nick Lethbridge  /  consulting dexitroboper
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"I took out a loan to pay for an exorcism. If I don't pay it back, I'm going to get repossessed." … Olaf Falafel
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