a rogaine: tough but fair :-)

Today, Deb & I spend six hours on a rogaine. That is, six hours walking in Julimar Forest, following a map & using a compass, looking for controls.

We walk 19km in six hours, with about 20 minutes of that just sitting, eating a late lunch. Overall average speed: 3.1kph -- which is the speed that we have been walking for years.

So for me -- and this blog: I'm pleased with the time & distance. Yes, it was a 12 hour rogaine, we would -- historically -- have walked at the same speed but for 10 or 11 hours. At the end of this six hours I am so tired that I can barely walk up hill. Still... I did not expect to walk so far, I would not have believed I *could* walk so far.

I am pleased with my level of "bush walking" fitness.

And I have discovered -- rediscovered -- that physical exhaustion does not always relate to sleepiness. I am blogging because I am not sleepy. Adrenaline? Endorphins? Whatever it is... I'll remind myself of this discovery when next I am too tired to go for a run :-)

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And now I'll write up some other interesting bits of the rogaine. Nothing to do with the theme of this blog. Just some points -- my eternal self-analysis -- which need clearing from my mind. Writing them down clears them from my mind... and I enjoy the writing.

When I am tired and can hardly walk up the final hill, Deb walks too fast. It's always like that, Deb walks faster on tracks, I walk faster through the bush. Today, Deb walks behind me -- despite being on a wide road. That way, I can set the pace without having the constant feeling that I must keep up with Deb. It works.

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For most of the event my navigation is good. I'm always the navigator, Deb corrects me when I go wrong. Today, though, Deb doesn't notice when I head off in exactly the wrong direction. Not often that I do that! Within a minute I realise my mistake, we head off in the correct direction. But I am showing signs of being tired.

A couple more successful control finds. I am now feeling tired and decide to drop one planned control, to head home a little sooner. We follow a convenient trail-bike track... which leads the wrong way. I get off that track, head in a better direction... and realise that I am completely lost.

Now here's something interesting about my attitude to being lost... starting with some explanation:

Deb & I enjoy rogaining with Deb's sister. She has joined our team several times in the last few years. Not this time; she and her husband are away. The sister is good company, with interesting conversation. When the three-way conversation lags, she and Deb chat like... well, like sisters, I guess.

For me there is an added bonus. My standards for attractive women include, If a woman looks like Deb then that woman is attractive. Deb and her sister look enough alike to obviously be sisters so there is an automatic attraction. The fact that they are so clearly different just adds to the attraction. So I am walking through the bush with two attractive women.

Today -- when I am lost -- I realise that there is a major difference in my attitude to the two women. Well, I already knew that. Today just provides an obvious example.

When we are lost -- just Deb & me -- I am worried about being lost. I know that Deb does not like being lost so I worry because I know that Deb is worried. I don't like it when Deb is worried. For myself, I know that I will eventually work out where I am. I know that "lost" is only temporary. Yet I am worried because I know that Deb is worried.

I am also annoyed because I like to show off my navigational skills. I enjoy the occasional praise from Deb, when I successfully find a difficult control.

With the sister, it is my navigational success which is more important. This is me, showing off my skills with map and compass :-) Look at the size of my... navigational brain! The sister -- as far as I can tell -- shares my understanding that lost is only temporary. So I don't worry that she is worrying. Yet I prefer to preen my navigational feathers -- for both these attractive women -- by *not* getting lost.

Different women, different attitude. I knew that. Today gives me a clear example of the difference.

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For myself, being tired affects my navigation. Yes, it makes me more likely to make mistakes. Worse than that, being tired makes me less likely to want to correct my mistakes...

Less likely to want to correct my mistakes?! Rogaining involves using a map and compass to find controls -- markers -- in the bush. Find as many -- or as few -- as you can, in a given time. If you are running out of time you can simply head to the finish without finding any more controls.

So when I am tired -- I don't want to look for any more controls. I just want to... get to the finish, so I can relax. Today -- when I am lost -- I focus all my efforts on getting to a track, identifying which track it is -- and following it to the finish.

What a mess! What a shemozzle, what a navigational failure :-(  Back home, I look at the map and work out where we actually went.

When we are lost, I focus on finding a track to the control that I want to find... and walk within easy range of another control! I want a control to the north, so all my efforts get us to the north. If I had travelled a short distance west, I would have found a different track... probably worked out where we were -- then found that nearby control. Even the control to the north would have been easy from that western track.

Instead, I fix my mind on one control, don't look carefully enough at the map, miss one control before finally becoming un-lost. And then -- in my tired and cranky state -- I refuse to even look for the control which is within a five-minute walk.

So I miss one control which I should have noticed was nearby, then I miss another which I *know* is nearby. And take the easy -- follow-the-track -- walk to the finish.

Oh tsk, tsk. How embarrassing :-(

I've done that before, when I'm tired. Refused to leave the straight path for fear of being lost. But I believe that today's example is my worst... so far!

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

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https://notdotdeaddotyet.blogspot.com.au/

back to fun running

Today, we run a fun run. So? Well, it's my (and our) first run since the last... And my last fun run was the one where I collapsed and found out that I have brain cancer. Almost eight months ago.

Today is the Gallipoli Run in Kings Park, four or eight km, run on a Sunday near Anzac Day. I'm no Anzac, not interested in a visit to Gallipoli but I support the idea of commemorating people who fought for our country. Also, it's a fun, fun run. A few serious runners and plenty of people who just take part.

The start could not be more suitable to a war-themed commemoration. Ten minutes to go and it was fine. We assemble at the start. Rain pours down. Thunder crashes, lightning flashes. Bugler plays the Last Post as we all stand in soaking silence. There would normally be Anzac Service words; today it is very, very brief.

We start, and the rain pauses. We run through intermittent showers, occasional thunder and lightning. Temperature is just under 20, we don't notice the rain while running, conditions are ideal.

It's a two-lap course. Deb runs her one 4km lap a couple of minutes faster than me, then I have another lap to run. Interesting: after years of claiming that I vary my pace to suit the course -- I run each of my two laps in the same time, within seconds. I just set a pace that I could keep to and kept on going.

At some points I felt that my legs needed a rest (too bad, I didn't rest). I once ran fast enough to almost start panting, otherwise it was all slow & steady, always jogging. Sixty-six minutes for eight km, much slower than when I was "healthy"... I am pleased with the result :-)

It's good to be running. And very satisfying to have completed an "official" event. Both satisfying -- and reassuring. I may not be fit but I am still able to get fitter.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

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https://notdotdeaddotyet.blogspot.com.au/

then and now

Monday morning, starting about 2am, I spend four hours sitting downstairs. Near the toilet. With regular runs of the dread Dunny Dash.

Ah! memories of the early days of my drug regime :-) Hmmm. But not good memories. Ah well.

Is it a side-effect of the last drug week? I doubt it. Perhaps long-term damage due to radiation and drugs? Unlikely. My guess is that it is a result of too much, too fast, dodgy left-over chicken curry. Nothing rotten, just too much curry for my apparently delicate digestion.

I don't dare sleep until the Dunny Dash is done. So I am tired on Monday. Not to worry, my main task is to be home for tradesmen -- and rain stops most of the work. There is, however, one unpleasant side-effect of being tired.

First: being tired is nothing new. When I was fit (ie more fit than now) I was running regularly -- and regularly feeling tired. Push the body a bit and I'm tired while I recover. It now takes a lot less to push the body and to make me tired.

Monday night -- feeling tired -- I have a nasty thought: I don't want to die! Well, fair enough. But it's not a pleasant thought and it's not a very useful thought. The thought is depressing. I recognise the depressed feeling as a result of being tired... a good reason to avoid feeling tired.

So I get a good night's sleep and feel better in the morning. Sure, I still don't want to die! But now it's just a thought. Not a nasty thought.

And now: back to my usual status :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

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https://notdotdeaddotyet.blogspot.com.au/

drug week, day five... and 6 and 7

Friday -- last day of this drug week -- I was feeling confident of my balance of drugs. At lunchtime I lost confidence and took a final anti-constipation sachet. And all went well!

My digestive system feels unsettled but otherwise is fine. I have survived the weekend and am already mostly recovered from Drug Week. Phew!

Deb wants to go for a bush walk over the weekend but we just run out of time. Saturday we pick up race packs for the Gallipoli Run next weekend. Our first fun run for quite a while. Deb will be okay for her 4km run. I will do 8km and can definitely do seven... Should be fine, I can walk the last km.

Then I have a burst of enthusiasm and enter the 12km Run for a Reason. Looks like I'll need to keep on training.

So we run on Saturday and we run on Sunday. Still slow and short but it does seem to be getting easier. I hope :-)

Now it's the family for dinner. A good weekend!

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

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https://notdotdeaddotyet.blogspot.com.au/

drug week, day four

During my Drug Week I don't like to commit to social engagements, to long drives... to anything which takes me away from home for more than an hour. Today includes a practical example of why.

The day, Thursday, starts well. Each Drug Week is a battle to balance two drug side-effects, diarrhea and constipation. I've been monitoring my poo -- as one does -- and decide that I can reduce the daily dose of anti-constipation powder. So I take one sachet in the evening -- but not the usual sachet in the morning.

All goes well. Mid-morning I pass enough solids to make any nurse happy.

Afternoon, Deb is going for a run. I have accepted that Drug Week is for resting and sleeping. This time though I say, Yes, I will go too. I will walk for an hour. Deb runs in one direction, I walk in another.

Have I mentioned my idea that walking and running are each a good counter to constipation? If I don't go to the toilet before a fun run -- I will need to go quite soon after I start running. Today, the idea is tested...

I've been walking for just twenty minutes when I realise that a toilet would be a good idea.

I walk another ten minutes in the direction of the nearest toilet when I realise that the need for a toilet is urgent. I clench my bum... walk in a very peculiar tight-arsed fashion... it's no use... I really, really need a toilet.

Luckily I'm running in a natural bush park. There is no-one else in sight... I clench my way into the bush, drop my pants, squat... and pooooo. Aaaahhhh... the relief!

As far as I can tell -- from looking at a pile of poo on the ground -- it's just towards the too-soft end of the poo scale. Nowhere near the runny diarrhea end of the scale. A good movement, just over-eager to be passed.

So over-eager that I have dirtied my pants. (You know, I sometimes wonder who reads this blog. I know why I don't re-read it: I was there, once was enough. It can be embarrassing. But it does help me to write as much of the story as I can.) I cover the pile with leaves.

At least I can now walk comfortably. Though I wonder if any poo has dribbled down the back of my leg (the running shorts are loose around the legs). I walk to avoid the few other people in the park.

Continue my walk, to the nearest public toilet. Where I wipe my bum -- and my shorts. After all, I have nothing else to wear till we get home! Finish my walk and we go home.

I now have one more definite example in support of my "run against constipation" idea. Trouble with Drug Week is that I am too tired to run, or even to walk very far. Perhaps it's time to drag myself out anyway... next month. Rely on walking and reduce the anti-constipation powders. Perhaps I can go on a walk which goes round and round a public toilet :-)

On the drive home I tell Deb of my adventures. Except... I do not mention the poo in the pants. We're married, Deb has to listen. But enough, I believe, is enough. Especially when I'm wearing poo-y pants and sitting next to her in the car.

The rest of the day is good. Deb cleans the house, I sit and relax. Deb makes dinner, I eat my share. Deb watches tv, I go to sleep quite early. It's been a tiring day.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

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https://notdotdeaddotyet.blogspot.com.au/

sleeping and waking

The hardest thing about my Drug Week -- in my current opinion -- is waking up to swallow the drugs.

I always plan to take the tablets between 3 and 4am. So I set the alarm for 4am then reset it -- before 4am -- as I get out of bed. Deb has instructions, If the alarm rings and I'm still there, push me out of bed. Unless the alarm has already been reset to 6am.

This morning I wake at just five minutes before 3am. Good timing! Reset the alarm to six, for Deb, then go downstairs to swallow a tablet and four capsules. Back to bed within the hour. Feeling cold but sleep for an hour or two.

Sleep is disturbed. Body is messed up by drugs. I sleep for an hour after breakfast and another hour after lunch. Other than that, I feel good! Though I do have trouble getting warm. The weather is cool and my body is not doing its temperature control very well.

I have to deal with a tradie during the morning. I accept a quote which seems high. Seems high because I don't like to spend money.

In between sleeping etc etc, I read a bit and get a few minor tasks finished and others started. Quite a good day :-)

Waking up in the wee small hours of the morning is tough. The rest of the day is fine.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

===

https://notdotdeaddotyet.blogspot.com.au/

drug week, day two

Back to drug week day one, Monday:

I wake up with a stomach ache. Settle it with dry crackers and hot tea. Stomach and gut spend the day feeling just a little unsettled. No actual problems.

I do a load of washing. Go out to lunch with a friend. Get home, put out the rubbish, clean the toilets (my specialist share of the housecleaning). Eat dinner... and go to bed at 7:30. I am exhausted!

Tuesday: Overnight I drink more water. Before, during and after my early morning tablet-taking. Stomach and gut are more settled than yesterday, no stomach ache, no problems.

I help Deb mind the grandchild. Morning is fine. Afternoon, I'm close to exhausted. Deb carries most of the toddler-watch load.

I do feel that I'm not as ... involved? ... as I would like to be. I spend half the time sitting and watching. But smiling & enjoying :-) And when I am more active, grandson is happy to include me in whatever he is doing.

Mind you, I may have been the same with our own kids. Not fully involved until they were talking clearly... I'm always more into talking than doing.

Whatever. An enjoyable and exhausting day. Yet it's already after 7pm -- and I'm not yet ready for bed! (Not quite...)

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What with the various side-effects of drugs -- and the various individual reactions of each drug-taker -- it's difficult to fix a best possible mix for each person. So I'm trying to work out -- by trial and error -- just what works for me. For this drug week:

... The key anti-cancer drug, the "chemo", is Temozolomide. It must be taken on an empty stomach, with no food for another half hour (or is it an hour?!) after. I take my Temo at about 3:45am. That is early enough that it is worth going back to bed for an extra couple of hours' sleep.

Temo has side-effects of tiredness and nausea. And by "nausea" I mean, vomiting. Lower doses did not worry me. The current four capsules -- 400mg -- does make me sick. I just accept the tiredness.

... I take one Kytril to avoid the vomiting. It is taken before the Temo, to allow the Kytril to be in place before the Temo hits the system. So I take one Kytril at about 3am. Then stay awake till it's time to take the Temo.

While I'm waiting (between Kytril & Temo) I sit downstairs and read. With Autumn coming on, it can be cold. Monday, when I went back to bed I was so cold that I could not sleep. Today I am careful to rug up, to keep warm, to be warm when I go back to bed. And I sleep.

Kytril prevents vomiting. It also causes constipation. So I take Macrovic, an anti-constipation powder.

... Recommended dosage of Macrovic is from 1 to 8 sachets per day. I take two sachets per day, one with dinner at about 6pm and a second sachet with breakfast, about 7am. I do this for each of my five drug days and it seems to work. Except...

Last month the Macrovic seemed to keep on working... for several days after I stopped taking it. So, this month, I may miss the final morning-after sachet. Depending on how I'm feeling.

I wonder if the "cytotoxic" (toxic to living cells) Temo could be killing my intestinal flora. Perhaps I could add a macrobiotic to my drug regime? To rebuild my intestinal flora? Expert opinion has it that (a) intestinal flora (gut bacteria?) is so different to human cells that the Temo is unlikely to affect it. And (b) there are so many varieties of intestinal flora that it is highly unlikely that any single macrobiotic capsule would contain the right mix to rebuild what was killed. So... regular macrobiotics? Not this month.

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And that's it. Quite simple, really. Last month was not too bad. I hope that this month will be even better.

I expect to be tired, possibly exhausted, for at least a week. Then somewhat tired for one or two weeks after that. The most annoying thing is my digestive system.

If all goes well, I spend a week or two not daring to be away from a toilet for more than an hour.

And that is, If all goes well...

Let's hope that this month, I have the correct balance of drugs :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

===

https://notdotdeaddotyet.blogspot.com.au/

cutting no-edge surgery

Have I mentioned gamma knife surgery? Perhaps in passing? Here's a brain dump; I hope it is not a repeat.

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Some friends told me about "gamma knife surgery". It's used instead of open skull surgery, for hard-to-reach brain tumours. I followed up with web searches and I asked my radiation oncologist.

... "Gamma knife surgery" (GKS) uses -- you guessed it -- gamma rays to destroy a tumour. The rays are focused on a 3D location, the tumour. At the focal point of the rays, whatever cells are there -- cancerous cells of the tumour -- are cooked and destroyed. The tumour is destroyed in just a minute or two, with no need to open the skull.

... A Queensland hospital can do GKS -- for about $26,000. If it's like my own radiation treatment as an outpatient, Medicare will pay for two thirds and private health insurance pays zero.

... GKS requires absolutely no movement of the head during radiation. Metal studs are drilled into the skull then attached to the table, to prevent the head from moving.

According to my oncologist, there's a lot of marketing. I did find a doctor in Chicago who offers GKS. He has a million dollar machine. Judging by his website he spends at least that much on glossy marketing. I didn't find any cost for the patient.

... A similar knifeless surgery is available in Perth, "cyber knife surgery" (Cyber). Actually, it is written as "Cyberknife Surgery", definitely a trade name.

... Its operating principle is similar to GKS, zapping a 3D area of tumour. Stereotactic radiation therapy, I think it's called.

... Cyber zaps radiation from a robot, which whizzes round to get the best shot. The patient's head must still be still but Cyber can track and allow for some movement. It does this by tracking bits of gold inserted under the scalp.

To me, Cyberknife is a more advanced version of Gamma Knife. And Cyber is a lot easier for the patient.

... Cyberkife is available in Western Australia. Cost to patient: $zero.

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Are either of these useful to me?

I have a particular type of brain cancer. A tumour in the brain could be caused by any one of several types of cancer. To know how to treat my cancer it must first be identified... My tumour had already had a bad effect (it caused me to have an epileptic fit) so it needed to be removed.

The only way to positively identify the cancer is to look at a sample under a microscope (or whatever). To get a sample, the skull is opened up. This is always the first step of cancer treatment. Gamma or Cyber or other radiation are "never" the first option...

If the tumour is wrapped up inside the brain and it is too dangerous to try to get  a knife to it, radiation may be the first option. Not a satisfactory option, though, since the type of cancer remains uncertain. My own tumour was at the outer edge of the brain; relatively easy to open up the skull, stick a knife in and gouge out the lump.

After open-head surgery -- once the cancer is identified -- it was time for radiation. This time, spot-on accuracy is *not* required. Sort of...

A tumour is a visible lump. It will be surrounded by cancer cells -- microscopic cells -- in the surrounding tissue. It is these microscopic and effectively invisible cells which will grow into new tumours.

If you have (for example) lung cancer, a tumour can be removed. The surgeon may also take out surrounding -- apparently healthy -- lung tissue. The idea is to remove both tumour and surrounding cancerous cells, to reduce the chance of regrowth. Take out some "healthy" lung, it doesn't matter, there's plenty of spare lung.

Take out "healthy" cells in the brain -- and the results could be disastrous. Loss of vision, loss of motor control, loss of life... depends on what part of the brain is removed. So cancer surgery on the brain removes as little "healthy" tissue as possible. Sounds like a job for Gamma or Cyber knife? Not really...

The tumour is visible, it is removed. The surrounding tissue, for a cm or so all round, may contain cancerous cells -- "seed cells" for future tumours. Zap them with a Gamma or Cyber knife and it's as though the tissue was cut out surgically: loss of this, loss of that, loss of the other... Serious stuff. To be avoided. As much as possible.

My own radiation treatment -- as far as I understand it -- zapped those probably-infected surrounding brain tissues. *Gently* zapped. The aim is to destroy the sensitive cancer cells and leave the less sensitive healthy cells still alive. As much as possible. So yes I will lose some brain cells but I should lose even more cancerous cells. (Take my word for it. As I take my doctors' word...)

My radiation was at a lower intensity than either Gamma or Cyber knife. Lower intensity, broader spread, repeated daily over several weeks rather than just once.

Cancerous cells will have been killed, the more the merrier. Other cells have been damaged. My hair, for example, was zapped and disappeared in a large circle on the side of my head. The hair is doing its best to regrow. Damaged "good" cells inside my skull are also -- I hope -- doing their best to recover.

Neither Gamma nor Cyber are useful for my treatment, nor are they necessary. I'm lucky, my tumour was clearly defined and relatively accessible. Whatever regrows -- when it does -- I may not be so lucky. We'll deal with that when it happens!

Meanwhile, I'm continuing the chemo.

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"Chemo"... it's short for chemotherapy: "the treatment of disease by the use of chemical substances, especially the treatment of cancer by cytotoxic and other drugs." That's when I swallow four capsules a day for one week in four. It works much the same way as my radiation.

The drugs I swallow are "cytotoxic": "toxic to living cells." The particular drug that I swallow is especially toxic to the living cells of my type of cancer (glioblastoma multiforme) (GBM). That's why it's so important to identify the type of cancer: so that the appropriate drug is used for the chemo treatment.

As with radiation, the chemo will also kill healthy cells... but not as effectively as it kills my GBM cancer cells.

I have a week of killing cancer cells -- and some non-cancer cells. Then three weeks to rebuild the non-cancer cells. That, I guess, explains some of my tiredness: I am using energy on regrowing and repairing essential "good" body cells.

Like the radiation, chemo should kill more cancer than healthy cells. It knocks me around but I come out ahead. So far :-)

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The technology -- and treatment -- are amazing. It would be fascinating to watch -- especially the Cyberknife robot... but really, all the patient sees is the inside of a face-fitting mask.

The Gamma knife suggestion lead me to all sorts of interesting -- and relevant -- information. Enough information to convince me to return to my standard state: put my life in the hands of experts and let them make all the difficult decisions.

And hope that the need for further knife-work -- gamma, cyber or stainless steel -- is delayed for as long as possible.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Even if a million people repeat the same nonsense, it is still nonsense" … Anatole France (paraphrased)

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https://notdotdeaddotyet.blogspot.com.au/