coming events

Next week I will be scanned: MRI for the brain, PET for the gut. About ten days from today, the oncologist will be able to tell me if there are any signs of cancer, either surviving or growing back. Yes, I am worried...

If the scans are all clear then... That's something to be glad about :-) It means that I can relax till the next scans, in three or six months' time (I forget which).

If the scans show more cancer then -- as far as I am aware -- there are no "better" treatment options. In other words, no stronger treatments with stronger side-effects... So that's something to be glad about!

There's nothing I can do to influence the scan results so that is what I shall do: nothing. Except -- I admit -- I shall worry. Just a little.

===

Oh, and I shall finish planning for a holiday, Deb & me, over Easter. And I shall continue training for the 82km Cradle Mountain Trail Run in, I think I decided, 2021... I can already run 6km on the flat, in a very slow time... just need to improve my distance, my speed and my ability on hills. No worries :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Avoid criticism: say, do and be nothing." … per Ginger Meggs

===

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

be happy, be Pollyanna

The Sunday paper explained how to live a long and enjoyable life. It seems that the secret is, to be happy. Easy, eh?

I follow Pollyanna: always look for something positive.

Pollyanna -- for those who don't know -- is the heroine of a series of books for young readers. She is soooo sweet. And soooo happy. Her catchphrase is, "That's something to be glad about!"

One Christmas the only present that Pollyanna received was a second-hand pair of crutches. After some thought she realised that, at least she did not *need* the crutches... And that's something to be glad about :-)

I read the book just a few years ago. Thoroughly enjoyed it. Especially liked the positive approach -- and began to apply it. Brilliant!

So I take chemo drugs for one week in four and the drugs really wear me down. But that leaves three weeks in four when I am *not* on drugs... And that is something to be glad about :-)

So I have terminal brain cancer but I have no pain... And that is something to be glad about :-)

So I have brain cancer and every other week I hear of a brain cancer sufferer who was diagnosed and was dead within weeks but I am still alive six months later... And that's something to be glad about :-)

So I find it difficult to get up the energy and enthusiasm to meet people but friends, relatives and family are still there... And that is definitely something to be glad about :-)

I'm glad, I'm happy, Pollyanna works!

According to the Sunday paper I should live a long and enjoyable life. According to historical statistics I should miss out on one of those. But the other -- the enjoyable life -- is still available.

And that's something to be glad about :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Avoid criticism: say, do and be nothing." … per Ginger Meggs

===

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

a few good days

It's good to be between drug weeks -- I'm feeling so much better! Still some interesting things to write about...

I find that I'm a bit fussy about the books that I read. For example:

I pick up a library book, read a couple of chapters and realise that it is the fifth book in a series. No wonder I don't know who all these characters are! No worries, it's a lot of nonsensical action, it doesn't need understanding. Then I read a chapter with some nasty violence -- and stop reading. I never enjoy nasty, now I don't even want to read it.

I pick up another library book and quickly realise that I've read it before. I check the review I wrote at the time -- and decide that the book is silly enough to read again. A by-the-numbers thriller set in the Amazon jungle: battle with anaconda, save daughter of the chief, lead heavily armed soldiers in search of miracle drug held by don't-mention-their-name tribe who kill strangers on sight. Absolute nonsense. I'm enjoying it :-)

I also read two lightweight books, just for the predictable good fun.

So many good books to read, so little time to read them! I give short shrift to books which I do not really enjoy.

===

I have the beginnings of a cold :-( We spend the day looking after grandson, starting with his third swimming lesson. He seems to enjoy it, Deb & I certainly do. I don't worry about passing on my cold -- I caught it from grandson.

Afternoon. Deb fetches a plastic bucket of water, grandson "paints" the paving with water. After a few buckets... I turn on the hose and sit back. Great fun! I do get hosed once but it's a warm day.

Water everywhere. Minimum effort for maximum fun -- and chaos. My work is done :-)

I've booked a few days' holiday accommodation over Easter. It's tricky scheduling a holiday... One option looked good until I realised it would be the weekend after a drug week, I'd probably sleep all the time we were away! Okay for me but Deb may not appreciate it...

===

I decided to not run for parliament in Cottesloe: "Forget the other idiots, vote for the idiot you've never heard of." Catchy, eh :-) I think that the next election in my own electorate will be within my three year planning horizon. I can run against the fool whose opinion on preserving Bold Park was, "I think whatever the party boss will tell me to think." I don't think he's spoken aloud since he was elected.

===

And in other exciting news:

I've passed rogaine newsletter files to other people. I enjoyed being editor but can no longer promise to put newsletters out on time.

I've closed my Facebook account. Nothing to do with my health -- I just can't see that what it offers is anything that I want.

And now it's time for my beauty sleep. Or, possibly, well past time...

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Avoid criticism: say, do and be nothing." … per Ginger Meggs

===

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

a night & a day

The middle of the night. I'm drifting off to sleep when Deb puts her foot on my crotch. Oho! I think with a smile :-) But Deb is fast asleep. She has stretched out a leg and -- by coincidence -- put her foot in my crotch. Very pleasant but entirely accidental.

My ability to lust was largely -- psychologically -- removed with my right nut. Not helped by the likelihood of dying thing, which is a bit of a downer. Or is it just age? My left nut is still interested, though mostly in an academic fashion. I'm interested but no longer driven.

Forget the analysis... Deb twists her foot a bit. I lie there and enjoy the experience. Thanks Deb :-)

===

Completely different experience: I wake up from a dream. Deb has just said (in the dream), that she has an enemy who keeps trying to hurt me. I try to stop this enemy.

My instant interpretation: My cancer is this "enemy" trying to hurt Deb. And I don't like it.

===

A strange night. But interesting.

===

The morning was for tradies. Most of the feedback was, Oooohhh, noooo, can't fix that. Oh well, it's a problem with a thirty-year old house where most fittings are as old as the house.

When the tradies are gone I go for a run... a slow jog... around the lake. Very pleasant, nice weather, see only one tiger snake. We each very carefully respect the personal space of the other.

Then lunch and -- you guessed it -- a couple of hours' sleep :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Avoid criticism: say, do and be nothing." … per Ginger Meggs

===

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

a good weekend

It's been a good weekend!

Okay, I feel rotten on Saturday morning. Still tired by Saturday lunch. But quite well by the time we go orienteering on Saturday afternoon. Another enjoyable event.

Sunday, I wake up feeling unrested... but that's the result of tossing & turning through a humid night. Just a restless night that I blame on the irritability side-effect of my anti-fit tablets :-)

I'm fine by lunch-time. That doesn't stop me having a nap after lunch.

Dinner with the family -- always a pleasure :-)

The only downsides to Sunday are, (1) It turns out that I have already read one of my library books and (2) the second library book turns out to be the sixth book in a series... Still, that sixth book is the sort of nonsense where it doesn't matter whether or not you know what's happening, it's just a lot of fun.

All up: a good weekend.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Avoid criticism: say, do and be nothing." … per Ginger Meggs

===

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

I need to remember this

I do seem to have balanced my drugs! Temo to fight cancer, Kytril to counter the Temo vomit, Macrovic to counter the Kytril constipation. I survived my drug week with my digestion relatively intact. Woohoo :-)

One of those -- possibly the Temo -- makes me very tired. DrT asked if I wanted to go back on Dex. That's Dex for dexamethasone, not dex as in dexamphetamine... I think. Mine is definitely not an illegal drug, it does something useful... and it is also a minor "upper", a drug to keep me wide awake. It also increases the appetite. And needs an anti-dex tablet (Apo-something?) to counter the nasty effect of dex on the stomach.

Enough!

I said no to dex. I'm happy to sleep -- though I hope that extra fitness will counter that. A bit. I don't want to take two extra tablets. It's only one week in four of chemo. It's the digestive effects that upset me most -- and I seem (from one week's test) to have that under control. No more postings from the toilet! And perhaps one less blog reader... :-)

===

What I want to do is, to remember how I felt at the end of the drug week. Why? So that next month, I will know whether I end the drug week feeling better or worse... or much the same. So:

Friday morning I knew that I would not be able to stay awake all day. Soooo tired. Friday is swimming lesson morning for our grandson, my job is to watch the clothes, then watch the toddler while Deb gets changed. I stay awake for that -- it's great fun, very entertaining to watch toddlers having a great time :-)

Deb does ask, Did I enjoy watching the mothers in their bikinis? If only I had brought my distance glasses, I reply. (Heh, my eyes are not really that bad, I enjoyed it :-)

Then I am dropped at home before lunch...

Where I sleep... never do get round to making lunch. Just sleep some more. Most of the afternoon.

Saturday morning I wake -- feeling even worse. Not only am I tired -- I have a vague headache. The sort I sometimes get from being too long in the sun. Except I have not been in the sun. Last time I felt like this -- I ended up in ED with an inflamed brain lining...

I lie awake thinking very gloomy thoughts.

Out of bed for breakfast and to do a load of washing. Gradually feeling better. Out for coffee & cake, I have iced coffee as a thirst quencher but have no appetite for the cake.

Home, lunch, sleep -- and I wake up feeling even better. I still take it easy -- but continue to improve.

Out to an orienteering event, to do a short course with Deb's sister. She is there to enjoy the event... and to catch me if I collapse. Reassuring for me, possibly even more reassuring for Deb :-)

This week the walking -- all 3km of it -- is no trouble. Past weeks I have struggled to keep up a reasonable pace, I could feel myself wanting to slow down. (Hmmm... this week's actual pace was slow -- but it *felt* fast. And I didn't feel the need to slow down.)

===

So: I seem to have reached a balance between vomit, nausea, diarrhea and constipation. That's good.  My appetite is weak but not weak enough to make my pants any looser. Pity :-(

I'm knackered by Friday, worse on Saturday morning then rapidly recovering after Saturday noon. Good enough.

My fitness is fractionally better. I can walk 3km without wanting to slow down at the end. So...

Cradle Mountain Trail Run -- here I come :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"You're only young once but you can stay immature forever" … per Ginger Meggs

===

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

change to training plan

Mondays & Wednesdays are my days for running training. This Monday I had lots of excuses...

Tired from all the activity of the previous week. Tired because this is my chemotherapy week. Weather is too hot to run. Don't want to fall asleep while toddler watching on Tuesday. 

So I decide to not run on Monday. And am still so tired on Tuesday that I'm dropped at home -- to sleep -- after just a half day of toddler watching.

Wednesday is my other day for running training. I use all the excuses from Monday -- and do not run.

Thursday I finally go for a walk. Deb walks & jogs, resting a sore leg. I just walk, it's the best I can do! Not quite 5km in an hour. Then I sleep some more. Looks as though it will be a slow time at orienteering on Saturday!

We've been going to the metro orienteering events with Deb's sister. Deb does her own course, the sister and I walk a shorter course.

One week Deb & I did the same course (no sister). I jogged, Deb walked -- and Deb beat me. Her sister also walks faster than I can jog... but holds back to my pace. We don't compete, we participate :-) And enjoy the outing.

===

To suit reality, I have now updated my training plan.

The plan had been quite simple: "Run slowly, run further each week." I had stretched myself to 6km in less than an hour. Twice. It was getting a bit easier to keep going. Until this week... when it is difficult to even get started!

So here is my new plan: "Run slowly, run further each week. Except in drug weeks where I will rest, do nothing, possibly walk a bit."

My first plan was the river, flowing faster & faster towards the ocean. My new plan is the incoming tide of the ocean, with waves coming in... then going out again. But each time coming in a bit further.

Unless, of course, my plan changes again, to become the lake: placid, calm, going nowhere at all. And possibly full of ducks, though I'm not sure how they fit into the analogy.

===

Time to take some tablets, then get back to bed. Today will be more toddler watching. I plan to be awake for the morning -- but expect to be sent home again -- to sleep -- at lunch time :-)

===

There, drugged up to the eyeballs. Time to get back to bed.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"You're only young once but you can stay immature forever" … per Ginger Meggs

===

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

Virus-free. www.avast.com

well drugger me

"Take one tablet, wait half an hour, take a different tablet, wait half an hour, eat breakfast." How much of that timing is essential? Is there any flexibility? Or is "half an hour" an exact time on which my life depends?

Doctors -- like other experts -- know what they mean. Often they know it so well that they forget that the patient may not also know what the doctor means. 

"Take tablet A at least half an hour before tablet B. Take tablet B between meals." Just after one meal? Just before the next? How close to -- or far from -- either of those meals? Why "between"?

"Allow enough time for tablet A to start working, then take tablet B." Aha! that almost makes sense! Did the doctor intend to be so clear?!

I've been trying to work out the best timing for my chemo tablets. A timing that works for me and that also allows the drugs to work... So:

I set the alarm for 4am. If it rings, Deb has instructions to poke me because I have overslept. I wake up sometime between 3am and 4am, reset the alarm (for Deb) to six, get up to swallow pills.

First pill is Kytril, swallow that quickly. My chemo tablets cause me to vomit, Kytril is anti-vomit. When DrT finally said, "Allow enough time for the Kytril to start working," it made sense: Let the Kytril sit in my stomach -- starting its anti-vomit magic -- before I swallow the next, vomit-inducing drug.

The next drug is Temozolomide. Its main function is to slow the growth of cancerous tumours. Its secondary function is to make me sick. (Its third function is to make me tired.)

How long is the Kytril effective? If I wait too long, will it have released its death grip on the contents of my stomach? If I wait more than the specified half hour between Kytril and Temo, will I vomit? The chemist suggested a *one hour* delay... I wait at least half an hour but no more than one hour.

Perhaps DrT knows how long Kytril is effective. Perhaps it is a few hours. Perhaps if she told me, I could be more relaxed in my timing. Perhaps I over-analyse.

I decide that the time between drugs will be the time it takes to finish this blog post. Somewhere between 30 and 60 minutes. That will get me back to bed before four o'clock. To get some sleep before breakfast.

Why all this 3am, 4am messing about?

After some quizzing, DrT admitted that Temo should be taken on an empty stomach. At a point "between meals" when my stomach contains very little food. And -- I guess -- I wait at least half an hour before breakfast so that -- if I do vomit after breakfast -- the Temo has had time to be absorbed.

Or does the Temo simply stop working as soon as I eat my next meal?

DrT may know the answer. If I knew the answer then I could adjust the timing to better suit myself.

Perhaps it's best to just blindly follow doctor's orders.

===

There, Temo swallowed. fyi:

I took 140mg of Temo each and every day for seven weeks, along with radiation treatment. No nausea, no vomiting.

Now I'm on five days of Temo followed by the rest of four weeks on none. First cycle was 300mg of Temo, double the previous daily dose. Then up to 400mg each day of the five-day cycle. This is definitely enough to make me sick! The Kytril prevents me from being sick. Though there is a lingering feeling of... tension... uncertainty... in my stomach. Nothing serious.

Kytril takes a grip on the food in my stomach, so I do not vomit. The grip is so tight... that I get constipated. Morning & evening I take Macrovic to counter constipation. The allowed dose of Macrovic is one to eight sachets (it's a powder, to be dissolved in water) each day. It seems to work... I started on four sachets a day, now I'm reducing to two. (It works very effectively.)

Three of five days into this Temo cycle and the balance seems okay. At least the Macrovic has no further side effects!

So far this week I'm feeling fine... As long as I can sleep for eight hours at night and another four hours during the day.

So far, so good :-)

===

While on the topic of Macrovic... it does have a side-effect. A *positive* side-effect!

In my previous life -- pre-cancer -- my drug-taking was limited to a couple of headache tablets every three or four years. Now I am a regular druggie. And I have been having chafing -- or the feeling of chafing -- in my bum.

It *feels* like chafing. The same feeling that I would get after a long and sweaty run. To be countered with Vaseline before the run. Due to its location, I can't see it. And no, I have not asked Deb to see if my bum is red and raw and chafing. I just rub on Vaseline.

This new "chafing" started with my chemo treatment. It comes and goes. Usually after (trying to be polite) after "number twos". Of which there are plenty, as I fight to balance the constipation.

This week has been the usual toilet regime, as the Temo tries to constipate and the Macrovic fights back. And yet... there is no feeling of "chafing"!

Not that I'm complaining! I'm just wondering... Did the Temo manufacturers add chili to earlier batches of the drug? Does the Macrovic include Vaseline? Am I too bum focussed?

Well, constipation and diarrhea are what I have. No pain, no other suffering, no sudden fits of psychotic insanity (as far as I know).

I take what I have. And blog it.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"You're only young once but you can stay immature forever" … per Ginger Meggs

===

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