now for some bureaucracy

It's about time, I decide, to apply for an age pension.

The CentreLink online system is good, it very quickly tells me that I first need to visit a CentreLink office. Our nearest is shown, online, as "relocating".

I visit a MyGov office. That CL office will be there for a few more weeks, we are told. Wrong, it looks as though it has been closed for weeks. Not to worry, the new address is close by.

Close by for people in a car, that is.

It's a nice office. Though the first office I've seen that has a security guard at the locked door to the toilets...

We don't wait long. I show a passport, a drivers licence, a bank card. I prove who I am and am given a "linking code". All very easy, all very friendly.

Back home, the linking code does not work. More correctly, it tries to link then tells me, Details do not match. Here's my best guess: N, Nick, Nicolas, Nicholas... pick one. I'm betting that the wrong one was typed into the CL system. So it does not match the MyGov name.

Oh well.

Today it's back to the CL office. To try again.

Not to worry. I can see the clear need for a nitpicking bureaucratic approach to dealing with CL. And every employee is polite and helpful and patient. So I tend to reply in kind.

==== 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/  :-)

radiation treatment... ended

At last -- the end of my radiation treatment ! What a relief :-) Yes, there will be a lifetime of chemo... but I can swallow pills at home. And, well, it's just a relief to have reached the end of one stage of my treatment.

There's a final meeting with Doc Harper at Genesis. Yes, I'm well, I even feel that I'm improving... now that radiation has stopped and chemo is on hold.

And Doc Harper says, Get an MRI scan and we'll meet again on the 22nd.

What?!

I've finished radiation. Genesis provides a radiation service. Doc Harper is a radiation oncologist. What does any of that have to do with a lifetime of *chemo* ?!

I'm sort of stunned.

An hour later I'm angry: what the hell are these people playing at? I count to ten. I'm rehearsing sarcastic comments. I count to 1000. What about Doc Tsoi? Is she involved? Is she expecting to tell me when to get an MRI? Not as far as she has said so far. What the hell sort of medical "team" are they? I sleep on it.

I think that I'm almost ready to send a semi-polite email to Tsoi. Trying to get her to act as though she really is the doctor who will be "prescribing and monitoring lifelong chemotherapy" ... as I was told she is. And asking questions such as, If I've finished radiation -- as Tsoi has clearly told me -- then why is Genesis still involved?!

Here are some of the questions which really need answers. Answers that I can understand:

== Have I really finished with radiation treatment?

== If so -- why does Harper/Genesis want to continue meeting with me?

== How many doctors need a referral? Last several times I asked -- no-one could give a definite answer.

== What is an "indefinite" referral? Harper mentioned it, it sounds like a referral which will last... indefinitely. Perfect for a lifetime of specialist care. So why has Tsoi never suggested it?

== I know that Tsoi wants a "baseline" MRI scan. When?

== Harper wants an MRI scan. Will it be good enough for Tsoi? Or will I need *two* scans?

== Lam wants an MRI scan. No idea when. Will that be a third scan or will one of the other two scan the required area (or whatever)?

== I had an MRI scan in ED. Is that no good to anyone?

== Harper mentioned a PET scan, for the gut (ie spreading testicular) cancer. Will Tsoi want one? Another one? When? Will the urologist be involved?

== There are two symptoms or side-effects which have lasted through most of my treatment: fatigue and pins & needles on the soles of my feet. The fatigue came late, it was expected, I mention it, accept it.

== The pins & needles has been there longer, it was the first and only symptom -- or side-effect -- that I have had since the very beginning. I still have it. So I mention it to each doctor.

== I mention "pins & needles". I mention "peripheral neuropathy". Each doctor simply ignores what I say.

== Not quite correct. The urologist actually listened. And responded! Could be a pinched nerve, she said. Which makes sense of the slight numbness in my groin, where she operated. Thank you!

== So what about the soles of my feet?! That started well before any operation on my groin. It continues into the current break in treatment. It must be outside the range of the doctors' tick-box treatment. They don't give a damn.

=== So I read the information on the patient information website of the American Society of Clinical Oncology, 40,000 American oncologists can't all be wrong. I read Wikipedia, the information is much the same but more technical. Trouble is, those two sites offer general information. I would like something that is specific to me, to the exact treatment that I have been given.

== Too bad. "My" doctors are not interested.

===

Okay, a couple of days and I am still disgusted but I manage what I hope is a polite email to the doctor who is supposedly managing my future -- lifelong -- cancer treatment. She has clearly told me that there is no more radiation in my future treatment. So all I ask is, Why then does the *radiation* treatment centre want to maintain an indefinite relationship with me?

If I can get a clear answer to that -- I may try asking some other questions.

===

Here's another side to the problem: 

I know nothing about medicine. Therefore I am perfectly happy to put my trust in medical experts. I have no doubt at all that every doctor on my "team" is an expert. For the past few months I have -- with absolute confidence -- trusted my life to a series of medical experts.

My wife & son understand more about medicine. They are able -- and willing -- to answer my medical questions. They answer in terms which I can understand.

Only trouble is... as I am now realising... if I don't know to ask then I will not get an answer. The experts are very sparing with their explanations. I don't realise that key details are not being given. And I don't know enough to ask.

Now it gets worse: we are moving from the absolute essentials of medical treatment to the "process" of medical management. That is, there is plenty to be done but the challenge is to coordinate rather than to follow a fixed treatment schedule. This is stuff that I understand. This is stuff that I have worked with for years. And I can recognise crap coordination when I see it.

===

Meanwhile -- to end on a positive note :-) -- we have a great day looking after our grandson. Sure, I have a cold but I won't pass it on because I caught it from the grandson. Can't be much of a cold... it barely slows down the toddler...

And the rest of the week... is mostly good :-)

==== 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/  :-)

recovering from... the treatment

Saturday. I have a nap after breakfast, a nap before lunch. Then a nap after lunch. Each time, I wake up feeling worse than ever. Not in an, I'm feeling sick, sort of way. I just wake up feeling more exhausted than ever. Too tired to do much more than sit & rest & sleep some more.

We go orienteering in Cottesloe. Beautiful weather, very pleasant area, good company. I do a "short" course. Very carefully... I know where I am, I know what I'm doing, I am so close to falling asleep that I worry that I could fall asleep on my feet...

Remember my "VSE"? Visual Surveillance of Environment? I constantly think, Where am I? where should I be? Do I remember where I was a few minutes ago? All is well: I am not unconscious, not unaware... just drifting around the course.

Conversation with other orienteers is similar: I am there, I am taking part... but I am drifting through the conversation. Enjoying the interaction. Not really "involved".

===

Sunday. I have a nap after breakfast, while Deb goes for a run. Then we go out for coffee & cake.

aside: We go to Floreat Beach cafe. This is a cafe at the beach, a place for people who are at the beach and who want a cafe... We enjoy the atmosphere of this cafe. There is a feeling of enjoyment, of being amongst people who are taking a break from enjoying being at the beach. As opposed to the nearby and newer City Beach cafes. Where the feeling is of being at a cafe. Which happens to offer a remote view of a somewhat distant beach. Not the same thing at all.

We go home for lunch. I have a nap... and wake up feeling refreshed. As I should! Today I am still feeling tired -- but not completely exhausted. A definite improvement :-) I have the energy and enthusiasm to do a few minor chores around the house.

===

What would this post be without a reference to some form of bodily function? Have I mentioned that -- a week or two back -- I had chafing of the backside? In an area where stinging could well be caused by too much chili in a previous meal. I saw a different cause.

All of this napping... I have found one chair which is comfortable for an hour or two's nap. A leather armchair. Lounging on leather, I reason, I am sitting in sweat. Sweat -- as it does when running -- encourages chafing. So now I sit... sleeping... on a thick towel. An absorbent towel. And the chafing has cleared :-)

And while I think of it: I have finally been applying moisturiser. Radiation had finished. There is a hairless circle on my skull where the radiation hit. (Will that hair grow back?) The top of one ear has burnt and peeled, it is within the zapping zone. Okay, there's no more radiation treatment. But I've moisturised those areas. Better late than never?

===

Back to Sunday, evening: we go out for dinner with the family.

I am feeling fine, involved, enjoying being out with the family. Noticeably more involved with reality than I was at yesterday's orienteering. Okay, I spend half the time with an absolute focus on what I am eating... my appetite is good :-) And I drag out a "joke" which is so old that ... well... the boys just ignore it. But that's pretty much standard for my jokes.

Saturday I felt fine. Sunday I feel good. I am definitely recovering from the treatment.

All good, all getting better :-)

==== 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/  :-)

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/  :-)