live a little, learn a little

Just take my word for it -- that was an exhausting week! Though I may be almost recovered... Monday, okay. Tuesday, so exhausted that the Genesis doc -- a stand-in one, Latham? -- cancelled my gut zap for the next two days. Wednesday, exhausted. Thursday, tired. Friday -- today, as I type -- almost recovered :-)

Let's just look at a few interesting lessons learnt:

... Drugs do this and drugs do that

Remember that the onc doc had Kytril on my drug list? I tried it till it formed poo rocks in my gut. A bit later I tried Maxolon, a milder form of anti-nausea. And have spent days before and since pooing water with finely ground bits.

Now here's the lesson, learned from the stand-in doc:

Kytril and Maxolon are both anti-nausea. One works by solidifying food in the gut so it will pass in smooth but solid lumps. Maxolon works by breaking down the food so that it will pass faster. Not necessarily firmer. Oops!

... Causes and effects

So why have I been passing very watery poo? One side-effect of having my gut zapped is that it can damage -- or destroy -- gut bacteria. So I've been told. Which makes me think, Okay, another week of gut zapping and I'll be okay again.

Stand-in doc tells me that the relevant area of my gut is *not* being zapped... Oh. Having had my body pumped full of anti-bacteria -- in at least one of my two recent visits to ED -- and each day via bacteria-blasting pills... now that could have killed off my gut bacteria. Ah.

Either way, my gut bacteria may have been exterminated. Bring it back to life with probiotics, says stand-in doc. The probiotics work one day... not the next... but what the heck, it's no great problem. Just one of the "side-effects" of treatment.

Lesson: Original causes may be important so they may, in future, be avoided. Identifying the immediate cause is just as important -- in the short-term -- as long as it leads to effective treatment.

... Those feverish nights

I often --- healthy or not -- wake up wet and sweaty. I tend to be cold when I first get into bed, pull up too many blankets then sleep till I wake up... too hot. Fever makes it worse. In ED a nurse changed all of my bedding -- and left me sleeping on towels -- after one sweaty evening.

I'm used to it. I've taken to sleeping wearing a wool thermal. That way I am still almost warm and can get back to sleep despite being damp and sweaty.

Now I realise: I can wake up sweaty then... change all my sleeping clothes! I go back to bed feeling dry -- and warm. And fall asleep again, very easily. In this warm Spring weather -- if I wake up a second time -- the thermals, at least, are dry again and ready to be worn again.

Lesson: I can put up with some discomfort, getting back to sleep in damp clothing. Or I can double the pile of washing -- two sets of sleeping gear -- and go back to sleep in warm dry clothes. Okay, the decision is simplified because I do the washing in our house :-)

... Health can be up and down like a yo-yo

Tuesday I was really crook. Wednesday ditto. Thursday not feeling too good. Friday, well enough to walk the 5km from treatment to home. Now I'm feeling well enough -- tired but not too bad. I can walk but not run.

Mid week my brain was flowing like treacle. Or slower. I believe I was thinking accurately. But very, very slowly. I would look at a book, or the pc, and wonder... why bother. Today my mind is operating at golden syrup speed, still below par but much clearer. I have the urge -- and the ability -- to actually do things.

eg I came home this morning with the idea for a short story. Wrote it. In between doing loads of washing and, eventually, eating lunch. Wrote a letter to the Minister. (I hope it does make sense. At least as much sense as I intended :-)

Lesson: Health can be up and down like a yo-yo :-)

Only a weekend plus two days and I'll have finished this phase of chemoradiotherapy ! Woo hoo !

I bet my health yo-yo will then be on the up-swing :-)

=======

Dr Nick Lethbridge / Consulting Dexitroboper
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/  :-)

so "blog now" is Friday tenth

I just sent an email to Deb at her work:

"Would you bbe able to come home sooner rather thasn later?? It's Wednesday's symptoms though not at ED level. But caRE & comffort would be nice. Annd a veery large apple juice if possiblle :-)"

Deb arrives home. I'm feeling absolutely crook: aching from top of head to mid-shoulders. Totally exhausted. Lying flat, trying not to move at all, eyes closed... though I'm not sure why that helps.

btw: I'm not thinking well. I'm writing several days later. Some details have been told to me by Deb. Facts in this post may not match the original reality...

Dinner. Crawl into bed. About 9:30 Deb calls the locum doctor.

Takes him a while to arrive. I barely see him, my eyes are still generally closed. The cat likes him though.

Doctor takes a look. Asks what drugs I'm on. Calls an ambulance.

Ambulance arrives. Cat likes them, too. She joins me on the bed and purrs at everyone. Then I'm off to SCGH ED again.

How do I get downstairs to the front door? By stretcher would require a second ambulance crew. So, no worries, I can walk down. I've done it before.

Paramedic keeps telling me, Straighten that leg! Straighten that other leg! No worries, I'm fine...

Later Deb tells me that the paramedics have piped in Ketamine. Horse tranquiliser. Okay, so perhaps I am just a little bit... relaxed :-)

A pleasant drive to ED at Charlies. Access is easier by ambulance...

I'm measured, tested. Blood tested. No infection. Last visit showed that my brain shows clear signs of having been operated on -- but no other damage.

Diagnosis: inflammation of one of the linings of the brain. The dura-mater? Robbie tells me it's a hard lining round the outside of the brain and stretching down to cover the spinal cord.

Makes sense me. Inflammation hurts. Dura mater wraps round the brain and spinal cord. I move my head... or shoulders... dura moves... and hurts somewhere else. Perhaps if I move lower parts of my spine it will hurt just as much. But I move ... very little.

I believe that I am pumped full of more painkiller. I'm thinking in super slo mo... I 'm moved to another area. I'm aware of the move but, later, need to ask, So where am I now? It's the Observation Ward part of ED. Where I spend the night. Deb has gone home.

I wake up a few times. One time I am absolutely dripping with sweat. Fever? (Or "febrile" -- my new word.) A nurse changes all my bedding and lies me on towels.

Next morning, Saturday: I wake up exhausted but able to walk round. Must have been force fed anti-inflammatory :-)  And I'm looking forward to breakfast... it seems a long time since I was last hungry. Nurses and a doctor drop by. I'm told to up my Dex dosage and speak soon to my oncologist.

A phone call or two with Deb...

Today we are supposed to be on an afternoon rogaine with Deb's sister and my sister. Deb contacts them to say, Forget it !

I'm released from ED, from hospital. Deb & I nearly get lost in the hospital corridors. I'm no help but at least I'm walking... I walk as far as the first seat outside -- then wait for Deb to bring the car to me.

Very nice to be home again :-)  I celebrate by sleeping. Most of the day and night. With anti-inflammatory added to my drug list, plus (I think) another anti-bacterial, just in case. And back to a higher level of Dexamethasone. Ahhh, whoopee, more pills.

Sunday evening: we finally get together with my sister! For dinner, with our (Deb & my) kids. I speak with my sister but I'm still somewhat dopey (I suspect). Still, good to catch up.

We gather at the table for dinner. I sit at the end of the table. Smiling happily and possibly drooling foolishly. All very pleasant. Only our grandson looks suspicious.

Deb & I drive my sister to the airport. Easy there, we get lost driving home... I manage to stay awake... till just after we arrive home. Then it's a restless but largely painless night. I do a lot of sleeping.

I'll draw the line here. Proof-read and post. More of the story will be in a later post.

===

The "real" today is Wednesday. It's been a yo-yo week so far, ups and downs. Today I feel not too bad. But still tiring very quickly!

Time to rest and relax.

Till the next post... :-)

=======

Dr Nick Lethbridge / Consulting Dexitroboper
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/  :-)

okay, so I may have been wr... wro... wr...

Okay, I may have made some perfectly valid interpretations of the situation. Good, clear, apparently sound interpretations which were, in fact ... not entirely correct. Not "wrong" of course. Just based on incomplete data.

More data is now (Tuesday 14th) available.

Back to last Friday... afternoon: and I am rapidly heading back to how I felt before my Wednesday visit to ED, the Emergency Department. On Wednesday I had been feeling better as I rested. Friday, I am feeling worse. Deb is at work, I send an email:

"Would you bbe able to come home sooner rather thasn later?? It's Wednesday's symptoms though not at ED level. But caRE & comffort would be nice. Annd a veery large apple juice if possiblle :-)"

You may notice one or two minor typos... I notice them but think that any attempt to correct the errors will introduce more errors. The message itself seems clear, I send it with errors.

This is the start of a very "interesting" weekend... which I shall document in a separate post. Because my current (Tuesday 14th) state is ... very tired. So tired that I could be typing any old nonsense. Which is my usual style :-) Right now, though -- I may not even notice.

So for now: tired, thinking below acceptable standards, physically weak otherwise fine, sleeping up to 20 hours a day. (Notice the weasel words: sleeping *up to* 20 hours a day. Which means, it's not really 20 hours but for marketing purposes you may believe that it is 20.)

I believe -- or, at least hope -- that I am now improving. That tomorrow -- or within a few days, anyway -- I will be back to an acceptable level of "okay". Right now -- I would not trust me to document what I had for tonight's dinner :-)

Give me a few days till I post about the events since Friday. And don't worry that, by then I will have forgotten. Much forgetting -- drifting through without actual remembering -- has already happened!

Till the next post...

=======

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

"Always remember, in a land of fel infused ancient elves, the peasant with a good banish spell is king." … Tehd Shoemaker

====

Now much more than a clever name for a holiday journal:

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

Virus-free. www.avast.com

nothing happens... till it happens

One of the things about writing a blog is that if nothing happens -- there is nothing to post. Or if life is just routine -- there is nothing to post. So for the last week -- there was nothing to post.

My life was just a routine, sort of. Until  Wednesday, when it all hit the fan... So, to make a long story short...

As if I would ever make a long story short :-)

I'll start near the  end of the previous post and work towards today (which is Thursday). Be assured, though, that all ends well !

Last Friday, I have my hair shaved off. Though not really shaved, just cut as close as possible with the hairdresser's clippers. There is an apology, So-and-so has gone home sick. I wonder if so-and-so is the accredited "men's" hairdresser and could have shaved closer. No matter, I come out looking close to bald. Close enough that my radiation-thinned patch no longer stands out.

Next day I'm shaving. I look in the mirror and think, What the heck. And shave all the way across and round my head. This is a bit risky -- for the fashion conscious -- because most of what I'm shaving is out of sight.

Was my hair short before? Now it is *really* short :-)  There's still a stubble -- I can feel it. But the shaver won't shift it. I don't think that my electric shaver likes the hard -- skull -- surface. I run the shaver all over till -- as far as I can feel --- nothing more is being removed.

Deb was out, now she's back. And yes, she can see the difference.

That -- Saturday -- night is a card night. The same group of us playing, every few months, for the last twenty or thirty tears. (There's a newcomer who has only been with the group for a couple of years.) We're all getting older, lots of nasty to serious health problems amongst us. We swap notes -- then  play cards.

Since I'm the terminal case, no-one likes to beat me... As if! I lose money over the night... But then, I usually do. If everyone else is trying to let me win (which I doubt) I'm sure I could still lose :-) Deb drop

​s​

me here. Pete gives me a lift home. (Thanks Pete!) A very enjoyable evening.

Not much sleep that night, so I sleep a lot on Sunday. Till the family arrive for dinner. Another enjoyable evening :-)

Then Monday and Tuesday... Start with the double radiation treatment. And grandson-minding on both days. When the grandson has his afternoon nap -- so do I. Still, I'm getting tired... Very tired.

Also, the weather is warm. I try to drink plenty but no, I suspect that it's not enough.

Monday night... I eat far too much. I just enjoy eating what Deb cooks :-) Tuesday I have indigestion. Finally, I take one of the "mild" anti-nausea tablets. And some anti-indigestion stuff that is bought over the counter. It works but I still feel too full and somewhat bloated.

Wednesday, the digestion is sorting itself out. I still feel tired -- the last few days have been fun but hectic :-) With not enough sleep. My stomach is fine but not feeling ready for more food...now that's serious, for me!

Deb drops me off for my weekly blood test (checking my white blood cell count) and the radiation treatment. Then she heads off to  work. After my zapping I plan to get to a Medicare office in Subi then ... walk ... home. Already I am thinking, No not walk, there's a bus for part of the journey.

Medicare very easily sort out a claim that, for some reason, could not be done online. Then I start walking towards home. Or, at least, towards the bus which will take me two-thirds of the way.

As I'm walking... I'm tired. Tired enough that I do my "VSE" -- visual surveillance of environment... I watch where I am walking, remember where I have been -- and make sure that it all seems to make sense. No worries, it all makes sense! So I'm not -- according to my self-analysis -- I'm not heading for a seizure. Phew :-)

But I am very tired.

And very glad when I reach the bus stop.

And glad when a bus arrives -- as expected -- within ten minutes.

Home at last. I put on a load of washing -- and sleep. Wake up, can't be bothered

​hanging

 anything on the line so toss it all in the dryer. And go back to sleep.

I've been tired since I arrived home, just before lunch. Too tired to eat! Now I'm tired... and I have a headache.On a scale of 1 to 10, it's a 7.

​ ​

Which is very, very bad for me. Plus, sleeping in odd spots has hurt my neck and shoulders. I woke up (Wed  morning) with aching neck & shoulders. Now they are actually painful.

I consider

​searching

 the cupboard for painkillers... Then I would need to email Deb to ask which I should take... But I would rather groan and curse at the pain.

​ Rather than move to the cupboard...​

Every hour or so I move position to try to ease the neck&shoulder pain. And curse the headache. Take a drink of water.Go back to sleep. Till Deb gets home.

It all hurts too much for me to do more than just wave at Deb and tell her that I feel crook. Okay, I'm a bloke. I don't deal well with pain. But by my standards -- this is awful. I hurt so much -- specially the headache -- that I don't like to move. At all.

Finally -- when I don't even stir to eat dinner -- Deb interrupts her own dinner to take me to the Emergency Department at SCGH.

It's a different place when you arrive conscious!

There are two queues:

​visitors

 and patients. I sit while Deb queues. After five or ten minutes there is what I had expected would be the very first

​ ​

thing to happen: someone walks down the "patient" queue and (I

​ ​

hope) asks what is wrong. It seems to me that "triage" needs to be done asap...

​Though

 I guess that if you fall over you will move to the head of the queue.

Deb had phoned Robbie. He agreed, ED is where I should be. Not just for my symptoms but because I have recently had my brain opened up. He joins us at ED.

I'm recorded, then moved to an ED bed. Measured, tested, questioned. Have a cannula inserted in a vein (yuk)... Just in case they need to add

​something

 to my blood, the doctor explains.

I have a CT scan of the brain... Same scanner-

​operator

 as last time, according to his records. I believe that I was unconscious, that time.

Then we wait. In ED then in an observation ward. I'm okay, I'm lying on a bed. S

​n​

oozing quite a lot. Deb Has a hard

​chair

 to sit in. She is hungry and cold. (She must be cold. I have a blanket and I'm getting cold.) We sent Robbie home with a promise to tell him when we were heading home -- or whatever

​ actually happens​

.

Close to midnight and the brain scan has been analysed: no sign of anything serious ... other than remains of the tumour-removal surgery. (Why do they call it "resection"? What's wrong with "surgical removal"? Guess I'll have to  read up on the meaning of resection.

With all this bed rest my aches and pains  have been fading. My headache is at 2 out of 10 -- still bad by my usual standards but nothing worth mentioning. All good!

aside: Once again I am impressed by the quality of care at Charlies. Every doctor, nurse, technician, whoever, has an air of competence and caring. Of course I am trusting them with my life :-) But I have no doubt

​ at all​

that I am in the best of  hands.

So, home with two bits of advice: Get back on the 2mg of Dex every day. (I had just reduced to every second day.) And see my "oncologist in charge" to update her on what

​has ​

happened.

Thursday morning: I take the Dex. Arrange an appointment with the oncologist. Head  off (with Deb) to radiation treatment. Followed by shopping.

​Feeling

 a lot better. A bit tired, not very hungry, otherwise fine. Something that I ate just passed

​through

 in an extreme hurry but -- to me -- that's better than the very slow alternative!

Wednesday was bad but the final

​analysis 

​was

 good. Today, it's back to routine. I hope :-)

====

My analysis:

At one stage of Wednesday afternoon I did think, Wouldn't it be funny if Deb came home and found me dead... But I did a

​mental 

check of how I was feeling -- terrible -- and decided that no, it was not *that* terrible.

By myself I would have waited a few days to see if all symptoms cleared. For Deb -- who cannot see inside me -- ED was essential. It's also reassuring to *me* that the brain is pretty much as expected. No sudden change.

I have been operating on too little sleep. Plus, the chemoradiotherapy has a side-effect of "fatigue". Yes, I was fatigued. Flat out for the previous few days added to both physical and mental exhaustion.

Mostly, though, it's the warm weather...

I try to drink more but it's not enough. I  know that, too: I go to the toilet but pee less. I should be drinking a whole lot more... I'm an old man, no-one is surprised if I constantly go to the toilet :-)

Warm weather, outdoor activity, walking towards home on Wednesday -- I was dehydrated. Possibly with some sun-stroke. I wear a hat but there is still a lot of sun.

It all added up to a major headache.

The aching neck and shoulders is also related to warm weather... but differently. It was a warm night, I slept with less blankets  -- and was cold! So I  curled up, slept at odd angles -- and strained my neck. Then slept on the nearest couch -- or chair, or floor -- and made it worse.

The worst offenders: dehydration and a touch of sun-stroke. Oh tsk, tsk, Mr Lam told me to not get dehydrated. Silly me :-(

On the other hand: I'm glad that I did have to have a CT brain scan. The various doctors may not be in a hurry for the next scan because they know that nothing will change for many months.

I, however, am glad to know that nothing has changed. So my emotional attitude is more positive than it was a week ago. Because "nothing has changed" also means, "nothing worse has happened".

And now --  I hope --  back to routinne :-)

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

"If you're not living life on the edge, you're taking up far too much room." … per Ginger Meggs

====

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

radiation side-effect

Okay, a promised side-effect of radiation treatment is now... visible. I am losing hair. Where my head is being zapped. It's sort of "male pattern baldness" except that the bald patch is off to the side of my head. There should be a photo to show the bald area...

Deb thinks that it looks embarrassing. Deb is even more embarrassed by the alternative, my white towelling hat...

So, Thursday evening, I'm at the hairdresser having my hair shaved off. Not quite shaved: clipped at the closest clipper setting. I'm left with stubble. But stubble which is the same length all over :-)  I guess that if the zap area goes completely hairless, I'll have to shave my head to match. Which could be tricky. I can't see what I would be shaving.

I ask the hairdresser to be careful not to clip the scar. Turns out it is well healed so no worries. She hopes that whatever was cut out is now all cured, I say, no, not really, more treatment to come. I don't mention cancer, nor terminal. She laughs at my jokes... a bit more than they deserve, I suspect. 

Very short hair looked very different to my normal style. Shaved looks even more radical, I think it's because there's no longer an edge between hair and not-hair. I also think that the bald head makes it more obvious that my face is fatter... that I have put on noticeable weight in the last couple of months. Oh well :-( Deb is pleased :-)

We celebrate... something... by going out to dinner. To a restaurant in the same shopping centre as the hairdresser. It's very nice, we enjoy the meal. Deb notices that every male customer of my age or older -- half a dozen men -- is wearing a check shirt. Am I out of fashion... again ?!

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

"Philosophers have only interpreted the world, in various ways; the point is to change it." ... Karl Marx

====

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

the mysteries of oncology

This (Thursday) afternoon: an appointment with Doc Tsoi. We met in hospital then again on 21st Sep. Today's meeting was set up at that 21sep meeting... neither Deb nor I can remember being given a specific reason to meet. Progress report, perhaps?

I have a few questions, I sent an email, I'll work through the points below. My impression is that Doc Tsoi is looking at her pc screen -- while Deb & I are in her office -- as her first preparation for the meeting. Of course I could be wrong :-)

I'll paste in my email. If I'm really clever, the email will be in italics. What we found out will be in not-italics:

... Is the government's "new brain cancer strategy" relevant to me?

This is a big government / media announcement that there will be a big push on research into *brain* cancer. Especially children's brain cancer. The doc was dismissive. Researchers will be happy, she said.

So, I commented, the only relevance to me is that I may as well leave my brain to science. That almost raised a smile.

... Can the latest (pre-abdominal treatment CAT scans) be made available to *public* health system. So my son (the one you met) can access them.

No, the scans are on either the public or private health system.

Which sounds like nonsense to me. I'll ask Genesis, they did the scans, they may be able to share the results. At least I'll ask.

... I get pins & needles feeling in feet (and very occasionally in hands). Is this a worry?

Ooohh... never heard of that one. No further comment. I guess that I read more Wikipedia than the doc: it's "peripheral neuropathy". No direct relationship (per Wikipedia) to any specific aspects of my treatment. My main concern is that I do have it.

... I get very occasional "cramping" in hands, feet. Is this a worry?

... Very mild, occasional headaches... possibly due to warmer weather. Should I worry?

We decided to agree that these could be caused by mild dehydration in the warmer weather.

Current referral -- to Mr Lam -- will expire in December. So I will need a fresh referral.

... What date will the current referral expire?

... Which doctor should the new referral refer to?

... Do I just ask my GP for a referral or will she need a specific reason?

The receptionist had answered this one. Having read the email when we arrived. The current referral will expire on 03dec. I'll need a GP referral to *both* Mr Lam and Doc Tsoi. So I'll set up an appointment with Dr P in late November... This sets a last-date for any trips away from home.

Current radiation+chemo treatment will end on 21st November.

... Will there be post-treatment appointments? When? With who?

... Will there be a post-treatment brain scan? When? [four weeks later, on 19dec17?]

... What drugs will I be on for the four weeks after 21nov?

                 Levet... yes? 

                 Dex+Panto ... no? 

                 Septrin+Temo ... no?

Deb & the doc call "Levet" by some other name... "Capra"? Whatever it's called, it's the anti-fit drug. I *will* continue with that one -- under Doc Tsoi rather than Mr Lam. The doc wrote a fresh prescription for it.

Dex+Panto, I'm to follow Doc Harper's instructions... (He hopes to reduce it to zero by the end of radiation.) There was some comment about gaining weight... which I am... but I have no idea if it was an expectation or a requirement.

Septrin+Temo both stop on the last day of radiation treatment. Which is 21nov. And I can then stop the weekly blood tests, too.

Blood tests? White cell levels? All fine, apparently.

When will the abdominal radiation be happening? asks Doc Tsoi. It's already started -- and will end within days of the brain radiation. Oh, that's very good, she says.

I may be under the care of a "medical team" but they are really just several doctors who occasionally discuss what should happen next. Genesis has started zapping my gut -- and Doc Tsoi does not have that in her own records. Hmmm :-( Each an expert... but it's not a "team".

Next treatment will start "after about four weeks"

... When will that timing be decided? [After brain scan?]

... Will it be chemo or chemo+radiation? Is that yet known?

The non-treatment gap will be exactly four weeks. Next treatment will be just chemo, no radiation. We set up a next appointment with Doc Tsoi for 14dec17, she will provide prescriptions for Temo. Plus, possibly others? I'm not taking Kytril and I don't get nausea so that may limit the extras. Except for the anti-fit which will continue... For six months from the fun run according to the original thinking.

I will also need a blood test, a day or so before the appointment. Another pre-treatment baseline? The Monday before should work, Deb can drop me off on her way to work.

The brain scan will also be a baseline... Any changes till then (four weeks after chemoradiotherapy) could be due to... ?? I think she meant, the brain just fitting itself back round the gap left by the tumour. Who knows! Anyway: The next brain scan will be a baseline. Followed by six months of chemo. Then another brain scan -- which will (or may) show whether (or not) anything has changed.

So there's no indication of progress or otherwise, I ask? You look well, she replies, That's a good sign.

As I understand it... the brain scan timing will be set by Genesis. So I'd better ask Doc Harper when it will happen. It could be another limit on when we can go away. (Speaking of which: we are narrowing our holiday aims. Forget Victoria, we may just see the southwest of WA.)

The six months of treatment will be on 28-day cycle: Days 1 to 5, take a tablet. Days 6 to 28, no tablet. Then start again. And again... and again... With brain scans to measure progress? Not mentioned. And drat, I didn't think to ask!

In earlier posts I said that I'm in limbo... no results so no knowledge of whether anything is "working". I expected the next brain scan to give some indication... Nope, no such luck.

Looks as though it's time to just... accept that something has changed, or not. Nothing I can do about it. (Nothing more.) Something may change, or not. Many more months of... limbo.

Oh well, that's life! Or not :-)

Better get used to it! No worries :-)

=======

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

"If I had asked people what they wanted, they would have said faster horses." … no, not said by Henry Ford

====

Now much more than a clever name for a holiday journal:

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

a new routine for zapping

I'm awake, ridiculously early. Taking some time to prepare for an appointment -- this afternoon -- with "my" oncologist. Listing some questions, noting some current symptoms, asking what will happen next...

It strikes me: Today I meet with the oncologist. But why?!

There was an initial meeting, pre-radiation. Okay, that makes sense. I still pull out the three scraps of paper from that meeting and find new understanding of what is currently happening.

Is it just me? Or are those three pages rather unclear. I do know that only one page refers to chemo+radiation treatment... Does that mean that the second page -- just chemo -- will eventually become relevant? Does it worry anyone -- other than me -- that the three pages are unchanged since the 2005 version id on the bottom of each page?!

Today's appointment is just after half way through the current six-week treatment. Is that significant? All I was told -- or, anyway, all that I remember being told was, This is the date for your next appointment. I'm guessing that it's some form of how's-it-all-going meeting. I'm prepared for my own side. I wonder if Doc Daphne will provide any new information from her side?

I've sent an email so Doc Daphne is not surprised. I'll see which questions are answered...

===

Meanwhile, may as well have a status update. Top to bottom... Where "bottom" -- for a change -- is actually my feet:

From day one of chemoradiotherapy treatment I have had pins&needles in my feet. At first I thought it was due to lack of exercise, blood returning to my feet as I started to walk a bit more. Turns out that it's one of the possible side-effects of ... all sorts of things. "Peripheral neuropathy."

I've not found any direct link to my particular drug. No mention in the oncologists's handouts as a possible side-effect. So I'll ask.

Moving up: I've decided that jogging is not for me! Not after sleeping for most of last weekend. I'll settle for walking... If Deb is out for a run, I'll try a 5km walk.

Monday -- I decide to walk home after treatment. Deb is at work, the best bus was (I think) a few minutes earlier. It's a beautiful day. Perhaps I can pick up some coffee on the way?

I pass three or four coffee shops. One is closed Mondays. Others are just closed. One is no longer a coffee shop. Not to worry, there is a new coffee shop close to home: we pass it each morning so know that it opens early... even on a Monday.

I enjoy the walk, taking it easy. Reach the definitely-open coffee shop... and decide that what I really need... is the public toilet on the far side of the nearby park! So I walk on.

I'm now two-thirds of the way home. And, very conveniently, near a shop which sells takeaway coffee -- and more. I buy coffee. And milk, for home. My carry-bag can be used as a back-pack, it's comfortable enough for short distances. So I walk home beside the lake, sipping coffee, carrying a couple of litres of milk. Very pleasant :-) About 6km walked, by the time I reach home.

Feet and legs -- ie walking -- working fine :-) Just not in condition to jog!

Up a bit... The bottom is working as normal. I'm glad I dropped the "anti-nausea". I've had no nausea, certainly no vomiting. Digestion is working fine.

Stomach, though, is expanding. I definitely blame the appetite-building effects of the Dex :-) That... and my enjoyment of eating. If I were running, I'd say that I'm 10kg overweight. If I'm happy to just walk and sit and do not-too-much, I'm still 5kg too heavy. Oh well. I've never been one to limit my eating just because I should :-)

And right at the top: Yes, my hair is definitely falling out. Just where the radiation hits. (So now at least I know where the radiation is hitting!) It's the traditional circle of baldness -- except off to one side.

Deb is getting embarrassed by my "hair" style. Yes, I wear a hat when I'm outside, to keep off the sun. In the shops today, Deb is torn... She is embarrassed when I take off my hat and show off my half-bald head. Deb is even more embarrassed when I wear my hat -- a white towelling cricket hat -- inside the shops. Me? I'm not embarrassed because I can't see the top of my head :-)

We get home and Deb books me in for a haircut. He needs a "number one", Deb says. Doesn't he usually have just a standard cut? asks the hairdresser. You'll understand when you see it, replies Deb.

Apart from that... it's been a standard sort of week.

We looked after grandson on Tuesday, I slept more than the toddler. I seem to be less tired today (that is, yesterday through to today) but that may all fall apart as the day goes on... Today will be quite busy.

I'm on the standard set of tablets but getting twice the radiation treatment. It starts with my head being fixed in place for brain radiation. Then I stand up, remove my shirt, lower my pants, lie down for abdominal radiation. It adds up to about twenty minutes in the zapping room.

I finally spotted one of the tattoos! There are three small tattoos on my body, to allow the x-ray techs to line up the zapper. So that it zaps the same area each time. I noticed one of the tattoos. Pointed it out to Deb. Is that all?! she said... Ah well, guess I still won't fit in with the local bikie gang.

This double-radiation will carry on for three weeks. Followed by a four week break -- as far as I know. A lot of my questions for today are, What then?

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Meanwhile -- back in the wider world -- brain cancer is suddenly the topic of the week. The federal government has announced a new "brain cancer strategy", with GBM as a first focus for research. Sounds like typical government blather but I will ask my oncologist if I should follow what's happening.

There was a bit on tv about the family who apparently have pushed for this new focus on brain cancer research. The mother has brain cancer. Okay, I thought. Then their child -- just a year or two old -- gets brain cancer. As the mother says: incurable, inoperable, terminal. And that, to me, is miserable.

My situation? Nothing to worry about. Relatively speaking.

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Dr Nick Lethbridge / Consulting Dexitroboper
Agamedes Consulting / Problems ? Solved
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"If I had asked people what they wanted, they would have said faster horses." … no, not said by Henry Ford

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Now much more than a clever name for a holiday journal:

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