Wednesday, December 27, 2017

perhaps it's all in the mind

Our son sent a link to a video. Playing it on the tablet the video would stop and start, finally providing sound but only a fixed still picture. On the PC it required an (unknown to me) app to play. But we had enough to know the topic of the video... So I searched for "cat being wrapped as Christmas present" and found a version which played. Ah! the joys of the internet, providing many, many copies of the same funny-and-cute cat video :-)

Later I told Deb, Yes, next Christmas we will definitely gift-wrap our own cat. Which lead to further discussion of "next Christmas".

There is -- statistically -- a 50-50 chance that I will be dead before next Christmas. Should this stop me making plans for -- or humorous references to -- next Christmas? No. I accept that I could be dead within 12 months. As always, I expect to live forever. We plan for up to three years ahead. I will refer, when relevant, to any future time.
===

Christmas 2016 has come and gone -- and it was fun :-) Lunch with "my family", dinner with "Deb's family". By the end of the day I am exhausted... but is my exhaustion a continuing side-effect of my treatment, or just that I don't feel comfortable with crowds of people?

In our partnership, Deb is the learner, I am the skimmer... Deb has a library book on coping with the psychological effects of cancer. I'm not interested in reading the book, I depend on Deb telling me about the relevant bits. Today, Deb wonders if I sleep a lot because I am suffering from depression.

People with cancer may have depression. People with depression may sleep a lot -- because they see no point in being awake. No point in getting up to do anything. (The bit after "because" is my own interpretation.) I certainly sleep a lot.

This is food for thought: Am I suffering from depression?

In the five years pre-cancer, yes, I had depression. I was unemployed and -- in terms of jobs which would interest me -- unemployable. Too long a gap since I was gainfully employed. I like to do things which make a difference. I get very little satisfaction doing something just for myself. Deb provided positive support and I "self-medicated" by, for example, planning holidays.

That was several years of mild depression. Do I now have similar feelings of depression?

Strangely enough, one of the effects of finding that I have terminal cancer is -- a lifting of my depression! All of a sudden, *long-term* issues disappear... No, long-term worries are not overshadowed by more immediate problems. I just don't have a long term to worry about. And that has a surprisingly positive effect on my mood :-)

So now I have no long-term worries. Instead, I have some pressure to complete essential tasks quickly, "just in case". Is this making me depressed? I don't think so...

I sleep a lot. But that's because I'm tired. On top of that -- I'm horribly unfit. Amazing how fitness fades away after three months of doing absolutely nothing. I do need to do something about my physical fitness.

In my running training I only train because Deb trains. I do enjoy training runs but -- given the choice -- I would rather sit at home and read a book. Now I need to re-start some physical activity... I need to get Deb back in training -- and to use that as the spur to get myself a bit more active.

Today, Deb takes me walking, to look for a few geocaches. The real reason is, that Deb is worried that I am sitting, doing nothing, because I am depressed. I don't think that I am depressed... but I certainly feel better after going for that walk :-)

Then I put together a Meccano model which I was given -- at my request -- for Christmas. It was quite tricky... can children "aged 8+ years" really do this?! Will I be able to assemble my second Meccano kit, for children aged 10+?! But here's the thing:

I do have flashes of worry: Good grief am I really going to die within the next year or so?! Just flashes. Then I have longer periods of worry: Am I just in denial, am I seriously worried but hiding it from myself? (I don't think so.) And I have the regular worry, of what Deb will do when I am dead. I "know" that she will be okay but I still worry.

Then I look at the assembled Meccano model. And I am pleased. *Very* pleased. Almost proud of myself... Something started, something completed, something successful. Something which makes me feel more cheerful.

Overall, I don't feel depressed.

It seems, however, that I can be more cheerful.

I'll work on that :-)







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

"The most difficult thing is the decision to act. The rest is merely tenacity." … Amelia Earhart

====


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Saturday, December 23, 2017

it's all about the timing

Five days of chemo, five days of learning how to minimise side-effects!

Monday: Swallow the chemo tablets... eat breakfast... chunder many times. Okay, that didn't work!

Tuesday: Chemo... take one of the "mild anti-nausea" tablets just before breakfast... chunder just once. Okay, better!

Wednesday: Anti-nausea, chemo... breakfast... feel queasy but no chundering! Okay, so I seem to have sorted that out :-)

I test the sequence on Thursday and Friday -- and it seems to work. Well, I don't chunder, anyway! Here's the sequence:

... Wake up at 4 or 5 am. Take a mild anti-nausea tablet. I'm not sure why doctors and chemists call them "anti-nausea". It's the "anti-vomit" properties that I'm after.

... Then I wait half an hour. The two sets of tablets are meant to be taken half an hour apart. At least, when it's the heavy-duty "anti-nausea" they are meant to be half an hour apart, not sure about this milder tablet. Still, better safe than even more sorry :-)

... Back to bed, back to sleep, till it's time to get up for breakfast.

And that seems to work... My stomach is not entirely comfortable but I can eat without bringing it up again. Success! I test the system by going out for coffee... no worries :-)

Interesting, though: Today is Saturday, no chemo this morning. Yet my stomach is still ... not entirely comfortable. And I am still exhausted, sleeping at the drop of a hat. As though the chemo effect is hanging round for a few days.

I've just re-read a pamphlet... It's radiation (not chemo) which may have delayed side-effects.

I also have a typed sheet for Temozolomide chemo: For chemo, common side-effects are tiredness & fatigue, check but should go away when pill-taking has stopped. Nausea &/or vomiting, usually mild and controllable, days 1 to 5, check. Low blood counts could happen after a couple of weeks, I'll be having yet another blood test before the next chemo cycle.

So I have no good excuse for any remaining side-effects... That's a relief, I feel better already :-)

btw: The typed sheet for chemo side-effects is dated 2005. And was prepared by the doctor who trained DrT. Time for an update! Or -- at least -- time to have it retyped and updated with DrT's name and a more recent date... Just to give me some reassurance of the currency of the information.

Not to worry: no more chemo for a few weeks! My stomach is accepting food, I can sleep when I want to. And it's almost Christmas Day :-) All good !






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

"The most difficult thing is the decision to act. The rest is merely tenacity." … Amelia Earhart

====


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Tuesday, December 19, 2017

more treatment ... and you know what that means!

No more radiation treatment ! (as far as I know) But... now I'm into a cycle of five days chemo, three weeks nothing, rinse and repeat. With three-monthly MRI scans to see if there's still a brain to be treated :-)

So I start the first chemo cycle on Monday. Up at 4am -- the anti-cancer drug needs to be taken between meals, on an empty stomach. Since I wake up several times each night I simply check the time and -- at a suitable time -- go downstairs to swallow the pills.

There are three pills. Adding up to 300mg of drug -- just over twice the dose that I was having with the radiation treatment. Just over twice the chance of side-effects! Common side-effects are (1) tiredness & fatigue, (2) nausea & vomiting, (3) damage to bone marrow, (4) poor appetite.

Well... Monday morning -- after my first dose of pills -- I am, indeed, tired. I had arranged to meet my brother in town... I'm too tired... I cancel.

Just as well... Ten minutes after I would have set off for town and I'm into side-effect 2: vomiting. Interesting... not much nausea. Just enough to warn me: get to the toilet, lean over, now! I take one of the mild anti-nausea pills. A couple of hours later and my stomach has settled, I start with dry crackers and work up to a very light lunch. And sleep for most of the rest of the day.

Side-effect 3 -- damage to bone marrow -- is measured by regular blood tests, measuring my white blood cell count. I was having a blood test each week in the seven weeks of chemo + radiation treatment. I'll have another blood test in January, when this five-day treatment cycle is finished.

This cycle finishes on Friday -- before Christmas Day on Monday. I hope that the weekend is enough time for me to get over the various side-effects... especially (4) poor appetite... Christmas Day is not a day for a person with a poor appetite :-)

On the other hand, a poor appetite is good! In the last three months I've gained 10kg.

First there was the Dex, a known builder of appetite. Okay, I enjoyed the excuse to eat a lot :-) Then there was something -- some part of my treatment -- which caused me to bloat. The bloat has gone. Now... I'm just overweight.

Not to worry, I'll just eat less :-) As if... For ten years I felt that I was 5kg too heavy -- too heavy for my running targets. And for ten years of "eating less" -- I failed to shift any of that 5kg. Oh well... I've always enjoyed eating. Especially when Deb is cooking :-)

Back to Tuesday, day 2 of this treatment cycle: Today I don't wait to feel nauseous, I take an anti-nausea tablet with breakfast. It works -- sort of -- I'm only sick once :-) Then I sleep a lot. And eat a light lunch.

I've cancelled an appointment with the radiation oncologist, the appointment that I feel is one too many, since radiation is finished. Still, I'm happy to see him again in about three months' time, to see if I have any detectable long-term effects of the radiation.

Another three days to go, for this cycle of chemo. Any plans are subject to how I feel each morning. That is, do I feel that I can safely move away from the house with its accessible toilet :-) So far, I feel better by the afternoon. But then, so far I also fall asleep for most of the afternoon.

Not a good time for making short-term plans! Or any plans, I guess... Last week I cancelled a booking for an exclusive, rather up-market visit to Mornington Wildlife Conservancy. Partly the cost, partly the uncertainty of any planning for June. Mostly, though, because Deb said, It's too far from a hospital... Not that that worries me, when a hospital is required I'm usually unconscious and so not worried...

But, back to this week: I'm sick in the mornings. (Deb gives me no sympathy for that. When I was pregnant... she says :-) I'm exhausted all day. But... While I'm sick, while I'm tired, I'm still alive :-)

And that's something to be glad about !






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

"The most difficult thing is the decision to act. The rest is merely tenacity." … Amelia Earhart

====

Saturday, December 16, 2017

and it's back to brain scan, blood test, doctor

Enough holiday! Well, never enough :-) But the break is over. Now it's back to medical matters.

We enjoy a long half day of minding the grandson. Always fun :-) This Tuesday, we go to the zoo. So there is a lot of pushing the buttons which open the gates. A lot of pushing the buttons which cause a machine to make a sound like a frog. A lot of showing other kids, Look, this button makes a frog noise! I'll push it for you!

Oh, and we do see a few animals as well... The way I see it, everything is new to a toddler, it's all worth seeing, animals are just one part of the interest at the zoo... and animals are a lot harder to see -- in a modern zoo -- than a button which opens a gate.

Deb's attitude is a little different... She finally picks up the toddler and says, Let's go see an animal! And they do... Though not the giraffe, I hear a lot about that, how they didn't get to see the giraffe.

As for me: by that stage I'm ready to just sit. So I do. I'm feeling well but still feeling tired. But I do enjoy our visit to the zoo... I'm like the toddler, everything is interesting :-)
===

Late afternoon and we are at the hospital for a brain scan, an MRI. Oh... wait... I've already covered this. It's the magnetic rays sex change "joke" which reminds me. Oh well. So you get a bit more about the zoo. Sorry :-)
===

Thursday, time to meet DrT, the oncologist...

We're on time, DrT runs just a bit more than an hour late. Doesn't worry me, I just add it to the list of black marks against the "medical team". But our son is also there, he waits an hour more than expected and he has better things to do. What's that you say? Doctors and dentists always run late? Well, our dentist has a busy practice -- and he apologises if he is running just five minutes late.

DrT is looking at my MRI scan. Since she did not request it -- I wonder what she would have said if I had not been booked in for a scan? Probably much the same... these doctors work to a checklist rather than matching patient symptoms to treatment. As far as I can tell.

When asked, DrT says that I will be scanned every three months. (She does answer direct questions.) I tell DrT that I will stop seeing DrH at the Genesis clinic. No comment. DrH -- a point in his favour -- told me to get an MRI scan. If I don't see DrH -- will anyone else tell me when to schedule a scan?! 

And here:  [MRI scan images] is a link to my brain! Can you see what I'm thinking? Or at least... can you see why I leave the *medical* issues to the medical experts :-)

Apparently the area where the tumour used to be is still visible but is smaller than it was a few months back. I take that as being good news. There is also an expert opinion with the scans: "There is slightly more prominent marginal contrast enhancement... this may relate to the effects of XRT." Which I understand to mean, "I can see that some of the edges are thicker but my lawyers won't allow me to guess what that means."

Then we get to the nitty gritty, the next stage of my treatment. Next stage will be a continuous cycle of five days heavy chemo followed by three weeks of nothing. For twelve months. The chemo will be the same drug (Temozolomine) at twice the dosage. Twice what it was when mixed with radiation, that is. The second to twelfth months will be at an even higher dosage... if my body can handle it.

DrT mentions nausea and Kytril. I say that I have never had nausea, just diarrhoea. As someone who has been to sea I know that the two are different and not necessarily related. I mention pins & needles on the soles of my feet. DrT doesn't hear / ignores / doesn't respond. As usual. Peripheral neuropathy is not on her check-list.

I say, Okay, what about exact dates? Getting there, replies DrT:

I'll be starting the first cycle of heavy chemo on Monday. And it will finish a couple of days before Christmas... Now there's something to be glad about :-)
===

Next day... I'm felling so good that I go jogging! In between sleeping, that is :-) I just go out and back for an hour, total. Alternately walking and jogging -- very, very slowly. I'm feeling fine... but months of doing nothing have not been good for maintaining fitness. Not just for running... We go out to buy a Christmas tree, to the place where you select a tree and saw it down yourself. We pick a small tree. I have to let Deb help with the sawing... Normally just a minute's work, this year I'm struggling to do it in ten. Sigh.

But it is a good looking tree :-)





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

"The most difficult thing is the decision to act. The rest is merely tenacity." … Amelia Earhart

====

Wednesday, December 13, 2017

after the holiday

first: In the last post I gave a weblink... it was wrong! I mis-typed. The link is now correct. Sorry about that.
===

We had a great holiday, very relaxing. I felt better every day... though I still slept a lot. And now we're home... and back to the usual:
===

Deb tells me that I am more easily upset -- I get angry -- than in the past. One of my drugs, she tells me, does have a possible side-effect of "irritability". Deb is probably being polite... I'm just getting bad-tempered too easily. (Though, to be honest, I think that I've always been like that.)

I shall try to be more polite. With Deb, that is... If I'm an angry blogger -- just blame the drugs :-)
===

We're home again and back to the usual routine: if this is Tuesday it must be a day of minding our grandson :-) We take him to the zoo in the morning. Luckily there are two of us -- after a couple of hours I have to rest, and let Deb chase after the toddler. All good fun...
===

After that... a visit to the hospital. First, I have an MRI scan. I can see why it makes some people nervous -- the machine hums & clicks & roars... and even shakes the board that I'm lying on. Doesn't worry me, it's just a big machine. Just one thing worries me:

I fill in the paperwork, hand it to the technician. "I'm James," he says, "I'll be looking after your scan today." He inserts a cannula into my vein (or artery)... (Okay, that's a second thing that I don't like about the MRI scan.) Then he leaves the scan room and starts the scanning. Lots of humming, clicking, roaring & shaking. Lots of magnetic rays hitting my brain.

There's a heavy door between the scan room and the control room. Fear of magnetic rays, I guess. Well-founded fear, too...

Half an hour later, the scan is finished. Remember James, "I'll be looking after your scan today"? He comes back in to the scanning room -- and he's now a woman! Perhaps there should be more screening between scan room and control room...
===

Then another room, to give some blood. This is for the regular white cell count. I've just had a cannula in my right arm. I offer my left arm. Then make sure to get sympathy from Deb, for having a bandaid on each arm.

There are at least three doctors who want to look at my MRI. I have an appointment for Thursday, another for next week and a third... I told the brain surgeon, just let me know if you want to see me.

So we're home again. Back to the routine of medical meetings. Preparing for more chemo but no more radiation (as far as I know). Enjoying this interlude between cycles of treatment :-)

Still feeling tired. Otherwise feeling very well.






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

"The most difficult thing is the decision to act. The rest is merely tenacity." … Amelia Earhart

====

Saturday, December 9, 2017

in holiday mode

A magazine article leads me to davidsavage.net/diagnosis, a website by a man who was diagnosed with a terminal illness... then re-diagnosed with a less serious version of the same. So he had thirteen weeks' of imminent death -- then back to life as usual. He's a leadership consultant so he wrote advice to the dying based on his own experience.

I skim the website. It seems to be well-meaning, possibly useful. If you're terminal and looking for advice on coping, have a look.

In this blog... there is no advice. This is just my own thinking. My own feeling. And sometimes doing.

===

In the same magazine is an article on the importance -- or not -- of being bored. The boredom expert sends clients out the back of the house to spend five minutes just staring at the trees. Being bored. Just to prove that boredom is not dangerous. Sometimes it can help us to relax.

Deb stares out the window at the trees. She doesn't last five minutes... it's too boring.

I stare out the window towards the trees. Can't stop looking! It's fascinating, the way that the leaves blow in the breeze. The overall shape of the canopy of that particular tree: why is it high on one side and low on the other? And ten minutes after that... I realise that I have just spent ten minutes watching a magpie cleaning its feathers. Fascinating!

I'm not sure why the boredom expert thinks that trees are boring. I would probably be more bored by the expert :-)

Then there's an email. In part it says, "My father In law was diagnosed with stage 4 cancer 5 weeks ago and last weekend my husband and I flew to Sydney for his Funeral." Stage 4... that's my stage. 5 weeks... no, that's not me. Five weeks is no time at all. I could barely tidy my desk in that sort of time.

I have a sudden feeling, I don't want to die!

Not a strong feeling. But five weeks from diagnosis to funeral scares me. All of a sudden -- I don't want to die.

As I go to bed I think, Perhaps I could cuddle up to Deb, cry a bit, get some sympathy. That would help. Help me, anyway. I do the cuddle bit and skip the rest. The cuddle does help :-)

A couple of hours later I wake up again. I think, I need to go to the toilet but I don't want to get up to go to the toilet... Nothing I can do about it... I get up to go to the toilet. Now everything is back in perspective: it's going to happen, can't be helped, do it / accept it.

Phew! another emotional crisis averted :-)

===

Meanwhile: Deb & I are on holiday. Staying near the beach at Myalup. We spend the time sitting round, sleeping, driving, seeing the sights, finding geocaches. All very pleasant. Dinners have been "locally sourced".

First night: fish & chips from the nearby shop. Average chips but delicious fish! Second night, I try the takeaway curry. Phew! good stuff! Third night we lash out, buy a heat & eat pizza. It's heated before we realise that the pizza is still sitting on a circle of cardboard. Oh well, tastes fine. And tonight, we may be back to the fish & chips.

Our holiday chalet is a couple of hundred metres from the beach. I like the beach... what I like is the wet sand, for digging & sandcastles. (Or sand *lumps* :-) What I can do without is the hot, dry sand, the wind, all that ocean of water. Perhaps I'm a "winter beach" person? We're staying by the beach, I avoid the beach...

Deb goes for a walk, I sit & read. I guess that Deb will end up walking along the beach... she does. I stay in the chalet, sitting, snoozing, reading. Just being a passenger -- while Deb drives -- has tired me out :-) I've also found that I am not much good as a passenger...

Deb drives, into the hills east of Harvey. As passenger, I navigate. We have decided to check out Logue Brook Dam. I have no idea where we should go.

I am interested in knowing where we are. Eventually I fire up the gps which shows our location on a map. Interesting! so that's where we are! And how do we get from here to the Dam? No idea... Not to worry... When we pass close to a geocache, I notice. We find a few beautiful locations because they are geocache sites.

Deb drives back to the highway. Finds a turnoff that points to Logue Brook Dam. We follow the signs... and find the dam. Easy :-) Just don't ask me to find it again.

Beautiful weather, good company. Beach for Deb, bush for both of us. An excellent break away from home :-)





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

"Being funny is being awake to the absurdity of normalcy." … Bob Mankoff

====

Now so much more than a simple holiday blog:  https://notdotdeaddotyet.blogspot.com.au :-)
====
   

Tuesday, December 5, 2017

counting to ten... again

Was it just last week that I believed that I had finished with the radiation treatment clinic? Until DrH (radiation oncologist) said, Get an MRI and see me before Christmas...

I emailed DrT (the oncologist "managing" my treatment). She replied (via her secretary), that DrH "would be wanting to follow up with you regarding and symptoms or side effects from radiotherapy. This is usual procedure for specialists to follow up patients after treatment and to monitor other cancer diagnoses."

"Symptoms or side-effects"?!

I've mentioned -- several times -- to both DrT and DrH -- three specific side-effects: diarrhoea; fatigue; pins & needles on the soles of my feet.

From each doctor, when I say "diarrhoea" the response is, "Oh, nausea, yes." NO, NOT NAUSEA. I have NOT had nausea. I just shit -- at reasonable times, in reasonable quantities -- but it has been the consistency of soup. So these doctors say, "So, nausea?" Because "nausea" is on their checklist. Deb says to each doctor, The ED treatment included stuff that would destroy all gut bacteria. This seems relevant. The doctors ignore it. It's not on their checklist.

Have I mentioned that DrT hands out typed notes and checklists that are dated as 2005? And at least one was written -- in 2005 -- by another doctor. Advances in medical science? Not in this clinic.

Fatigue? Yes, that's on every checklist. It's expected, it's allowed. We nod and say, yes, fatigue, as expected.

Then I mention pins & needles. Once or twice I have said, Peripheral neuropathy. The response -- from either of these doctors -- has been... nothing. No sign that they have even heard me. It's not on their checklist so my actual, real, is this a worry side-effect -- has been completely ignored.

So one of these specialists wants to "follow up with you regarding and symptoms or side effects". Why bother? Neither listens. Neither is interested. And I'm not interested in "follow up" where actual -- real -- side-effects will continue to be ignored. I may as well talk to a brick wall.

===

On the bright side: When I mentioned pins & needles to the urologist -- she actually heard the question! Could be a squeezed nerve where I cut, she said. That makes sense in the groin -- the area where she cut -- and yes, a section of my groin is a bit numb. A doctor who listens! What a great doctor :-)

The numb feet, though, appeared before the groin surgery. One good surgeon does not balance the blank I'm-not-listening of the two oncologists.

===

DrH also told me to get an MRI scan. I ask DrT's secretary -- I've given up pretending that DrT is going to answer -- I ask, Will this MRI suit the needs of all three doctors who seem to want an MRI? I attach DrH's request form to that email. "Yes, we can get the MRI reports etc", she replies. Of course that's not answering my question.

There are scribbles on the MRI request form provided by DrH. Is that defining an area to be scanned? Is it defining the area that all three specialists need scanned? Only DrH wants a scan before Christmas... will the other two send me back -- maybe twice -- just to suit their own schedules?

Well, I think, I'm certainly not going to get answers that make any sense. May as well just book an MRI scan and hope for the best. I phone the MRI scan company.

While I wait on interminable hold, I look more closely at the request form. It has someone else's name on it.

DrH was talking to me. Addressing me by name. Peeled off a sticker for another patient and stuck it on the form. Helloo-oo... anyone home?!

From that point on, I leave all organising to Deb. She phones, makes an appointment. Goes into the clinic to get *my* name on the request form. I count... very very slowly... to ten.

I'll meet with DrH then DrT. If the one MRI scan keeps everyone happy, I'll just smile and nod. No need to ask questions... no use... because no answers will be available. Except for the standard, Here is an answer that some other doctor prepared more than ten years ago.

I have no intention of making further appointments with DrH. He doesn't listen. DrT doesn't communicate -- not with me, not with DrH. I may as well be ignored by one doctor rather than two.

===

... eight... nine... ten.

And tomorrow, Deb & I go away for a few days. Relaxing by the beach, driving through the forest, perhaps finding a geocache or two. Eating at gourmet restaurants... or... fish & chips for dinner every night :-)

We're both looking forward to getting away from it all.

And I'm hoping that, for the rest of this week, there will be absolutely *nothing* that I feel is worth posting to this blog... If I do post, I hope it will be along the lines of, We are having a great time and this is what we are doing...

If there are no posts at all -- just believe that we are having a very pleasant... and very relaxing... good time away from home, the city... and away from any and all medical specialists.





==== 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: