Dances with Porcupines

I'll get to the porcupine reference, eventually.

Chatting with a friend who has more diseases than I have... Well, I only have two forms of cancer, all else is well, that's an easy count to beat. The friend tells me about his second stroke.

Aside: That's two people I know who have had a stroke -- only to be told that that is not their first stroke. Hmmm... Don't have a stroke alone, if the symptoms clear up it's hard to define exactly what happened. Anyway:

This friend knew nothing about his first stroke. Or, rather, he fell over, woke up later, blamed it on... anything other than a stroke.

Second stroke, he is with family. They watch him -- take photos -- rush him to a doctor. The doctor says, Those photos show the classic signs of a stroke. Score one for photographic evidence :-)

So I come back with my own story. I'm told that I also showed the classic signs of an epileptic fit. But no-one took photos! Probably just as well, the classic signs for an epileptic fit are that I wet my pants.

===

On that same number one (lol) topic... Here's the pattern of my waking during the night. Every couple of hours:

First, I wake up to have a pee. By then I'm cold, so I pull up some blankets and go back to sleep.

Next I wake up because I'm too hot. So I throw off blankets (after going for a pee, why not) and fall asleep again. Then wake up cold, go for a pee, pull up just one blanket, go to sleep.

Finally wake up for no good reason except that I've slept for six or seven hours. I'll wake up from relatively light sleep with remnants of dreams. A good sign is that this waking up often includes a "piss hard-on". Not that it's good for anything other than controlling the need to go to the toilet. (I go anyway.) Any erection at all is a sign that I am on the positive sign of my varying moods :-)

One dream -- the scrap that I remember -- has me dodging crocodiles. Possibly some reference to being worried about various bodily ills. In the dream, I do avoid every crocodile.

(Why not sharks, the more fashionable water-based threat? Sharks don't worry me: they stay in water, I avoid water. No worries.)

There's an interesting shift at the end of that dream: I'm looking at a block of land that I own, watching as I grow a crop, harvest it, repeat... I think, I only grow enough to get by, never push the land to its limits. I don't consciously think about it but that's a feature of my life: I enjoy what I have and don't work too hard to get more.

===

Today is a day for a PET scan. It's five months since the last. I'm not too worried abut this scan: it's checking for new signs of testicular cancer. If it's back, it's treatable and not likely to kill me. So I'm told. The "dangerous" MRI scan is next month.

Today's scan is scheduled for just after 9am. I have time to drop Deb at work in town. This also takes my mind off the fact that I am fasting. I'm in the city with a clear hour to get to SCGH for my scan.

Nearing SCGH I am in the wrong lane for the parking... no time to change lanes. I drive past. Plenty of time.

The queue in the opposite direction is long, nowhere I can do a U-turn to join that queue. No worries, I can park in Kings Park and walk across. Still plenty of time. Take my water bottle... no... I failed to close it, it's now empty.

I park and follow... the wrong path. It adds a kilometre to my walk. I walk past the new children's hospital and find that there is another carpark there -- with plenty of empty spaces and a very short queue to get in. Too late, I'm almost there -- and running out of time.

I get into the hospital and follow signs to the "blue lifts". And miss. An orderly driving an indoor buggy stops, gives me a lift back to the blue lifts. I get there with five minutes to spare -- except that hospital clocks are running five minutes fast.

There has been one no-show. If I had been early I could have been scanned earlier. Oh well.

I need a thumb-prick to test my sugar levels and a cannula to feed in radioactive sugar. The thumb-prick hurts, now I'm still weak from loss of blood. (One small drop.) The nurse aims a cannula at my left arm -- and misses. A crooked vein, she says. She aims at my right arm -- and misses... ouch! I tensed, she says. (Yes, I did.) So she shoves the cannula into my wrist.

I'm clearly tense, I never like the needles going in. You're very tense and clammy, says the nurse. The morning so far has made me tense, the rapid walk to get here has made me sweaty and clammy. Time to relax...

I sit in the lead-lined room while radioactive sugar is dripped into my veins. I enjoy leaning the chair back -- until it hits the wall behind me. I push the down-button again, the brake unlocks with a clunk, the chair move forward, I relax. An hour's rest and relaxation.

Followed by a twenty minute scan. Free sandwiches to break the fast. A quick chat with a doctor to make sure that I am fit to leave. (This is standard for all PET patients.) The doctor has a French accent, I have no idea what she says. I guess it is, Are you feeling okay? I am, so I say I am. I'm ready to leave.

And that's the porcupine reference: four punctures, four small sticking plasters. Hold the last one on firmly, I'm told. Any post-PET-scan bleeding is treated as a radioactive spill.

Outside, the day is warming up. I take the short way back to the car, it's 1.2km. I'm looking forward to a cold coffee at the Park café... can't be bothered. I drive straight home.

Arrive home at noon and email Deb to say it's all done. Deb replies that she is just starting to worry.

===

Phew! home at last. I do nothing much. Till the far more difficult task of sending an email to the wife of the cousin who just died.

I declared my terminal cancer before he was diagnosed with treatable cancer. We both treated it as a race to extinction... I'm taking an embarrassingly long time to die, he raced downhill fast. Hmmm... not sure who won that one...

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"If it's stupid but it works, it's not stupid." … Ginger Meggs

===

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

good news, bad news

No, the bad news is not me...

Good news: At Saturday's orienteering I choose the Long course -- and finish. Sure, I'm last, by quite a few minutes. But I finish -- and that is my first "long" finish for a long time. Possibly for more than a year.

As I get back into orienteering I select shorter courses. I've never tried for speed, it's always about finishing. This year I am alternating: a short course when I have a trail run the next day, otherwise a long course. The long course is my "distance training". And finally -- I finish a long course :-)

Very satisfying.

Bad news: My cousin died. I have other cousins, this is the only one that I have kept in touch with. He was a nice bloke, despite being Irish. He had some good opinions, they must be good, we shared them. We only met half a dozen times in our long lives, I'll miss him.

It does remind me of all the things which I should be doing... just in case. Is that selfish?

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"If it's stupid but it works, it's not stupid." … Ginger Meggs

===

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

Be Prepared

In the category of, "Some Relevance to the Original Blog Topic":

Deb & I go for a drive today. Following the final leg of the Mundaring to Albany 4wd track. Just 35km of easy gravel road.

We have barely covered 5km when we stop... not our own fault... We stop to help a family in a broken-down car.

I don't catch the details but it seems that whatever the problem is, it is a known problem with a Jeep. That is, a phone call or two has determined that no, the engine has stopped, it needs specialist Jeep service. It needs to be towed to that service.

The tow service has said, We don't go off the highway. Get the car -- to the highway... 5km along a gravel road. With no power.

A few cars have passed, none could tow a broken-down car. The family has spent the night camped in the bush.

We have the right equipment! Tow connection, snatch strap, connectors. I carry the gear in the expectation that someone else will know how to use it.

The jeep driver connects our Prado to his Jeep, back-to-back. I tow him far enough up a hill for him to roll down again and turn his car. To face the right way.

He connects jumper leads, just to get the windows (electric windows) open... the family are stifling in the car, it's a hot day. We top up their water supply. The driver reconnects Jeep behind Prado. We tow to the highway.

The Park Ranger has passed by earlier, couldn't help but promised to return, to see if all was being sorted out. He returns, follows us to the highway. We leave the family in the shade, waiting for a tow truck.

We have helped another driver :-) We finish our drive, pleased with our successful adventure.

===

Relevant philosophy:

Amelia Earhart said, "The most effective way to do it, is to do it." I'm happy to report that it is just as effective to have the right equipment so that someone else can do it.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"If it's stupid but it works, it's not stupid." … Ginger Meggs

===

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

out of the Slough of Despond

Tuesday, we go for a run. Five km round the hills of a local park. Actually I'm not in the mood for a run, I mostly walk and only cover 4.5km. Though it feels good to do even that :-)

While I'm "running" I have a very odd -- and rather gloomy -- feeling: my next scan will be positive and even now, a cancerous tumour is growing in my brain. Wow!

I've had a few weeks of worry. This is different. I was tending to the negative, now I have a definite *belief* that all is not well. Bit of a bummer, really. There are reasons for my gloom, all of which I can logically reject.

Dizziness, the can't-stand-straight, fall-into-walls sort. It's come back. Logically, I first had this five or more years ago and I'm quite sure that it's caused by too much PC game-playing. Which I've done a lot of in the last week or so.

Tiredness, can't be bothered doing more than a slow walk. Logically, I was on a tough trail run less than two weeks ago. With my current level of fitness I take a while to recover. Oh, and I'm getting older. Yes, really :-)

Aching shoulders and back. I should never read scary articles which claim that the first sign of some cancers is aching joints, or bones, or something. (I only skimmed that article.) Logically, this is RSI / OOS / too much bad posture at the PC.

Mostly, planning a holiday which is seven months ahead makes me consider the chances of surviving that long. Logically, looking ahead makes no difference to the odds of living that long.

Il-logically: I run around the park with the clear belief that my cancer is back or that it will soon be back. I look at the logical contradictions (contra-indications?) -- and can't shake the gloom.

So I accept the gloom and carry on.

Tuesday evening at home with Deb: I'm a bit quiet (relative to my usual self) but it's hard to be gloomy.

Wednesday I'm at lunch with a friend. I admit to feelings of gloom, this helps. Good conversation helps. A few hours relaxing at home and I'm back to my usual balance. No worries :-)

Do I really have a fresh tumour? Can't tell, and all the "symptoms" have better explanations. (Unless my gloom is justified, then I may be sick but I'm very clever to have noticed :-)

Do I feel well now, today? Yes, except for tiredness which may be lack of fitness, old age, both. Light exercise and better posture at the PC have helped remove the aches from shoulders and back. So for today, I am well.

If I am currently riddled with fresh cancer, what can I do about it ?

Okay, I could panic and demand an instant MRI. But if it's back... it's back. And if it's back just two months since the last scan then (a) it's getting more active and (b) another month to the next scheduled scan will not make much difference. So, nothing much I can do, so no use worrying. Not till the scan is done, then I can worry while I wait for the results. As usual :-)

Nothing I can do, no use worrying.

And, having written all that down -- I can forget about it.

I think I've climbed out of the Slough of Despond(*). If I'm back there tomorrow I may have to introduce Deb to the Icelandic practice of

ísbíltúr

.

===

(*) Smart-alec literary reference. I once read quite a lot of the book. It was painfully unsubtle.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"If it's stupid but it works, it's not stupid." … Ginger Meggs

===

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

delusions of mortality

Statistically, 50% of people with my cancer die within 12 months. I've survived several months more than that. Woohoo :-) Yet there are some disadvantages to beating the odds on mortality.

First, it's a bit embarrassing to keep on living and living and living... I'm glad to do it but I do feel the need to say to people, Yes, I'm still terminal, just not yet.

More seriously: any bodily weakness can be interpreted -- hopefully misinterpreted -- as cancer coming back.

Oh, and I no longer write everything with no fear of living long enough to be embarrassed. Dirty pants, for example, are now more than a passing (lol) joke. It's a few weeks back that I dirtied my pants, it's taken a while to be sure that it is fit to be documented.

I'm pulling on my shorts and I notice... a dirty brown stain over the crotch seam. Uh oh. I take off the dirty shorts (I still have some notions of cleanliness) and check this suspicious stain.

Funny, the shorts are stained both inside and out. I check the wash-basket, yesterday's underpants are not stained. Phew! It appears that the stain did not come out of my backside, it could not have bypassed underpants just to stain the pants.

I must have sat on something. Something damp enough to stain inside and out but not so damp that it spread into the underpants. Just ordinary everyday dirt, that's a relief. But see how the sick mind works:

I know that my gut is now unsettled. Undependable. Overactive. When I see a suspicious stain my first thought is, Have I lost control without even noticing? I need to think it through logically before I can reassure myself that this stain is just ordinary -- environmental -- dirt. I still check my shorts before I put them on... just in case.

===

Years ago I started getting dizzy spells. Two types of dizzy, in fact: standard low blood pressure don't-stand-up-suddenly dizzy and a total bouncing-off-walls lack of balance. The first, I've had for years, I still believe it's from lying still for hours -- reading -- then standing too quickly. Takes a while for the blood to start moving again.

The loss of balance, I blamed on too much staring at a screen playing World of Warcraft. My inner ear settles down, can't get moving fast enough when I need to balance. Being sick -- playing far less WoW -- that dizziness disappeared. A benefit :-)

Now that dizziness is back. Yes, I've been playing WoW again. Yet I can't help thinking, Was that dizziness really a symptom of a growing brain tumour? Is the tumour growing back? Negative thinking but I can't help it.

===

Now I'm planning a holiday which will happen -- in my personal style of calendar -- two brain scans in the future. Two scans! Will I still be able to travel after two more of my three-monthly scans?

It's not that I feel more mortal than a month ago. But planning two scans ahead forces me to consider, What if one of those scans is positive? My usual pattern is to stress for a week or two before each scan. Holiday planning is causing me to stress much earlier.

It's not quite stress, either. I've shifted from balancing on "it'll never happen" to "it's going to happen". Or, rather, from denial shading into acceptance, to belief in inevitable death.

Still.

The "belief" is there but still with no expected time. Other than three years one month and some days... Yet I have an overlay of belief that I *could* die even sooner.

It's a weird state of mind. I've had a few weeks being less happy than usual. Writing it all down now... I am already feeling better. I'll see if this improvement lasts... For now -- after ten minutes' typing -- I feel better :-)

===

This Friday we decide to do a bit more bush-track driving: we follow a bit more of the Albany to Mundaring 4wd trail. We try to:

The instructions -- starting near Dwellingup -- say, Follow Scarp Road. Nope. The waypoints don't. Luckily I have Deb to navigate and we are soon on the correct track. Later there's a closed road, we navigate round it and find the track a bit further on.

We cover 125km in nearly four hours. An excellent drive but tiring. We leave the last 30km of track for another day... and drive home along the highway.

I'm the driver, I have no trouble, I am tired at the end of the day.

===

For our next (in our plan) holiday: We will be in Edinburgh for the Military Tattoo. Yes, sure, the Tattoo will also be in Sydney -- but that's just not the same as Edinburgh Castle. We have two tickets for the Tattoo. (In the post in April, anyway.)

I have also booked accommodation for a few days round the Tattoo.

Have you ever tried to find accommodation in Edinburgh during the tattoo? And (Deb tells me) during the Edinburgh Festival? Plenty of choice, all extremely expensive. With payment up front and no cancellation.

The Tattoo itself is a sunk cost. If we don't get there I accept it as lost money. Doesn't matter, it's a charity. Hotels... etc... I want to have some chance of getting money back. Just in case.

Travel insurance, you say? Do you have any existing medical condition? they will ask. Yes, terminal cancer, I'll reply. Hmmm... can't see me getting money back on that one :-) I will talk to the insurers. I am also trying to commit only to costs which can be recovered with no questions asked.

Looking for costs which can easily be recovered is a constant reminder: I may not be able to get there. ("I"... Even if I crash out Deb could go. But she won't. I think :-) It's a constant reminder that I do have cancer. That a tumour may -- should -- grow back at any time. Just a depressing reminder.

Speaking of which: Just today I have booked three days accommodation for the days around the Tattoo. A nice place -- just not in Edinburgh. A half-hour train journey away. I think it will be easy travelling... and it's a pay-on-arrival deal.

Now I just have to book a walk along the West Highland Way... book flights... book other accommodation... have two clear scans between now and the Tattoo.

No worries :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"If it's stupid but it works, it's not stupid." … Ginger Meggs

===

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

up down up down... up

The last few weeks my mood has been up and down like a ventriloquist's yo-yo. Okay, that makes no sense -- but the expression came to mind and I like it :-)

I think my mood is a bit easy to knock down, due to lack of long-term clarity. Little things can upset me. Not to worry, I also bounce back quickly :-)

===

We now have a relatively long-term holiday plan, to go to Edinburgh to see the Military Tattoo. We have Tattoo tickets, nothing else is organised. I suspect that Deb does not believe that we will actually get there...

Me, I both doubt and don't doubt. After a couple of clear scans I can't see what could go wrong :-) On the other hand, the Tattoo is the other side of two more of my regular scans. Which way will the dice fall ? I'll book some accommodation and make sure that as much as possible can be cancelled at no cost.

===

Last weekend was hot. So hot that we decided to not go to Saturday orienteering. Then I went on a trail run on Sunday... Just over 10km, just over 400m climb. I was slower on this "short" course than I had been, in previous years, on the "long" course. Good news: I finished :-) Amazing news: I was faster than another ten people. Very satisfying.

===

I may have mentioned: a leftover effect of (I believe) the chemo drugs is that my digestive system is slightly stuffed. After a short run in a local park where I had to dash into the bushes half way round... I am very careful to go to the toilet before I start running.

Three times before this run. And I mean three lots of poo, not just pee, in the hour before the run. None of this annoyingly unspellable diarrhea, either. On the bright side -- no need to dash into the bushes during the run. Not that I could have "dashed" anywhere...

Despite all that, despite the exhaustion after (and during) the run -- I do enjoy trail running :-) Almost disappointed that it's a few weeks till the next.

===

I do notice the pins & needles feeling on the soles of my feet. It's there when I run and takes a while to fade when I stop running. Not enough to affect my ability to run, it just feels... funny. Not really sensitive, just funny.

===

There are a whole lot of things that I need to document, so Deb can find out how to -- for example -- pay bills. I made a start, months ago, it didn't get very far. For one thing, even I had trouble understanding what I had written.

I've started again. Documented a few of the easier bill-paying processes. I'm trying to document each bill as it comes in. I'm amazed how many bill we pay!

===

Fitness: still working on it. Health: quite good, really. Mind: seems to be working okay. Mood: cheerful with occasional snatches of low-level gloom.

Holiday: time to plan and book... :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"If it's stupid but it works, it's not stupid." … Ginger Meggs

===

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

another week, another holiday plan

The last week has been a pleasantly peaceful -- though not relaxing -- start to the New Year. Family, friends, exercise. Cast my mind back twelve months and I did not expect to see this Christmas, let alone the year 2019.  So there you go, I'm pleased :-)

I hope that anyone who reads my blog is also having a pleasant start to 2019... Happy New Year !

===

A friend said to me, I'm always glad when I see an email from you, it means that you are still okay. That is so nice.

Sympathy is one thing. I appreciate sympathy though I don't really need it. Deb needs more sympathy: imagine living the rest of her life without me :-) Caring, though, is very much appreciated. Thank you.

===

Off topic: Have you noticed that parenting skill always skips a generation ? Our grandson has excellent parents. He's also lucky with the uncle and aunt that I know. Best of all are his grandparents... Grandad, in particular, knows all there is to know about parenting.

How can I know so much ? It's because I remember all the mistakes I made with our own kids. By avoiding all that I did with our own kids, I know that I am a high quality grandparent. Easy.

===

So what's that about "exercise" ?

Thanks to Deb, I still manage a couple of training runs each week. Deb goes for a run, I am shamed into also going for a run. And gradually, I am going a little bit further. Deb runs 5km, I run 6km. With weekend orienteering for a more organised outing.

This past Saturday: I run a short course at orienteering. Three km at a steady jog. A short course because...

… Sunday I am up at 4am, to get to a trail run at Walyunga. Again, I do the short course. At this short course I take an hour and a half to cover 9.99km -- with a lot of walking and a climb of 333m. I even manage to beat 16 of the 177 people on the run :-)

My training plan continues to be, Slow & steady. I've never been in a hurry to go faster. I want to be able to enter longer runs -- and finish. Beating 16 people tells me that I am ready for these trail runs. Just as well, there's another trail run in two weeks' time.

The Cradle Mountain run is definitely on my agenda. I have three years, one month and a few days to prepare, no worries. If it takes longer to prepare, that's fine. If I drop dead first, I won't be worrying :-)

===

Deb & I are watching the ABC broadcast of the Edinburgh Military Tattoo. We always enjoy it. A few days later I think, Let's go see it live. So (after checking with Deb, of course) -- I buy two tickets to the Military Tattoo... in Edinburgh.

That's in August. I've looked at accommodation. I've looked at inn-to-inn walks, the West Highland Way looks good. Deb checks, yes, the WHW is on her five-year-old list of walks to be walked. Other than Tattoo tickets, nothing is confirmed. There's plenty of time till August.

Which raises another point: there's plenty of time till August.

Yes, our planning horizon is three-plus years ahead. I've already planned holidays "on the other side" of a brain scan. Cradle Mountain is three years ahead. I still plan for it.

Now I'm about to plan for -- and commit to -- a trip to Scotland in August. Which is -- in my terms of measurement -- the other side of two MRI scans. I find that the stress level is a lot higher.

The Tattoo tickets are a sunk cost: non-transferable, non-refundable. No worries there, it's the price of a commitment to the trip. Buying early also gets good (I hope) seats.

I now know that the Tattoo organisation is a charity. I'm happy to lose money to a charity. Other costs, well, I'll look for a good refund policy. Insurance may help -- but a known brain cancer is unlikely to gain sympathy from an insurance company :-)

The real stress is because I am making a major plan for a future time by which I could -- statistically -- be dead. Each scan brings a week of pre-scan stress. Planning a major holiday for the other side of two scans... I can feel a similar... potential... level of stress. Which I shall deal with by careful planning, positive attitude, crossing of the fingers.

Some stress. Plus a high level of excitement :-)

===

Aside: As I started typing that last section I remembered a point which I need to record. Rather than make a note, I committed it to memory. And, like a dream, I can remember that there was a point but I have no idea just what that point was. Sigh.

===

Aha! What memories will I leave for Deb ? That's what I remembered then forgot:

Some of what I do is in preparation for after my death. The financial expert in The West suggested a folder labelled, Where Have I Hidden all the Money (or something like that). That serious, useful, stuff is already on my to-do list. Somewhere near the end.

When I plan a holiday... agree to go out for coffee with Deb, buy something useful or nice... throw out junk that I will never use and Deb will never want... I hope that Deb appreciates it. Or do I?

Should I be trying to leave Deb with fond memories of her then-late husband ? Would it be kinder to leave her with more accurate memories: untidy, avoids housework, self-opinionated… (You're right, the negatives do make a very short list :-)

Should I aim to leave Deb with a rosy image that will never allow her to enjoy a single day without me ? Or should I leave her with negative memories that ensure that she will soon get over my death ? Noooo… I think I'll just create memories that are of me. That's easy. No extra effort required.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"All the world's a stage, but the script needs new writers" … Ginger Meggs

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