tired, worried, power mad

Saturday. The weekend after a the drug week. Stomach is uncomfortable but not bad, I'm still tired. I could also be getting a cold.

Deb & I go out for a run. I settle for an hour's walk, about all that I can handle. Revise my fun run training plan, now: walk a bit, perhaps jog a bit, try to finish the run, eventually :-)

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I have started to worry about dying. Why? What has changed?

I think it's partly, I'm feeling tired. That's always bad for the mood. Not helped by an incipient cold. (Which was tiring on Saturday... then faded away.)

I'm due for another MRI by the end of May. That -- for no good reason -- has me worried. Last scan was clear. If this next scan is clear, I can choose to stop the chemo treatment. Why stop? It seems that all clinical trials were over six months; there is no indication that further chemo will help. Hmmm.

If the next scan shows cancer, I *may as well* stop the chemo treatment! Again, no evidence that further treatment will help. I remember early reading indicating that the chemo drug becomes less effective over time.

My real worry is due to the change... I've been quite happy just following doctor's orders. It's the best known treatment, just do it, I just do it. Now I've reached the end of the best *known* treatment. What next?!

There's a feeling -- a definite knowledge -- that all treatment so far has been a delaying action. From now on, it's a matter of me, my body and random chance. With nothing specific to do, no plan for best possible treatment -- I have time to worry. So I do.

The knowledge that I will die sooner rather than later has moved clearly into my conscious mind. With nothing else to do -- I worry about dying.

Too bad! Sure, I can worry. And there's nothing I can do about it... except to *stop* worrying! Or, at least -- to not let worry interfere with my (remaining) life. And especially, to not let my worry upset family and friends.

Okay, okay, you can worry about my cancer! But don't anyone worry about my worrying... it's all under control :-)

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Except one extra worry: How will our grandson's parents tell grandson about my death? With honesty and sadness, I expect. And, I hope, with a clear feeling that life is to be lived, till it is over, with no regrets.

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Sunday. *Still* tired! We go for a walk in Walyunga. Deb finishes with signs that she is as worn out as I am... It's not just *my* exercise regime which has suffered.

It's a beautiful day, we enjoy the walk. Seven km, lots of uphill. A good way to celebrate Mothers Day :-)

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My digestion is settling. As it settles there is one issue... I've decided that solar panels are not enough. If I can connect my backside to the gas mains, I believe that I could sell energy back to the gas company.

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Monday. My remaining tiredness is at the "not enough exercise" level. That is, back to "normal". My digestion has settled back to normal. Time to do some essential chores and to recover some fitness.

Fitness? Just one week till the next fun run! Uh oh...

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Speaking of chores: I need to go out to shops. Which means, stop typing. Which means, the planned "sex post" is delayed, yet again. Sex is an essential part of life. Funny how hard it is to write about.

So, till next time:-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"I know so little that it astonishes me how many people know even less." … per Ginger Meggs

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

middle of the drug week

This drug week seems to be particularly tiring. I think it may be because I am -- overall -- recovering a bit of my fitness. In my non-drug weeks I am feeling -- slightly -- better. So the tiredness due to chemo drugs is more noticeable.

That is, this week is much the same as any other drug week but it *seems* to be more tiring. Because I am slightly less tired in the in-between weeks.

On the other hand... I do seem to have the constipation / diarrhea balance just about right. Which is good :-) Though my stomach is constantly uncomfortable. Not threatening, just uncomfortable.

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It's been a busy week. Getting up at 3am is only part of it. That's half the reason for my tiredness. But only half. Dealing with the drugs definitely tires my body. Still, it's been a good week.

Sunday is orienteering. I have a remarkably smooth run, only lost once. I "run" so slowly that I have plenty of time to navigate accurately.

Monday I meet with a financial advisor. Nice bloke, willing to help. I don't believe that his advice on inheritance is entirely accurate. Still, he provides a lot of worthwhile ideas.

Then I go to Kings Park for coffee -- which is cancelled. Oh well. I spend some time in the park, enjoying the sunshine.

Tuesday we mind the grandson. As usual, I take it easy while Deb does most of the minding. We start at a play centre; I'm able to sit and watch. With lots of toys and toddlers, Grandson entertains himself.

Afternoon, back home, I provide entertainment with computer games, I pour sand into a tip truck, all three of us make shapes with playdough.

Early to bed, after an exhausting day.

aside: I'm typing this post while awake to swallow pills. The four chemo tables go down quite quickly but I still shudder with each swallow. It just seems wrong to swallow something without chewing it. Ugh :-(

Wednesday. I want to get a tyre expert to work out why all four car tyres need pumping so often. Instead, I just relax round the house all morning. After an early lunch I take coffee and a book to a comfortable chair... and almost sleep through the time I have to go out for coffee.

So far this morning I have drunk three cups of tea and one of coffee. Chatting with the friend I drink iced coffee. Then a second. I am really, really thirsty.

This is the coffee meeting which was cancelled on Monday. With a friend who has more diseases than me. His dog has more problems than the two of us together. After coffee I go past the friend's place to say hello to the dog.

Driving home I think, it's tiring meeting people, but enjoyable. And at least the friend does not insist that we play in the sandpit.

On the way home I fill the car with petrol & check the tyres. This time only one tyre is low. I drive past a tyre repair shop... but can't be bothered calling in.

Nearer home, I stop to do some shopping. A few groceries. Milk is the only essential. (We drank coffee right next to Woolworths but I like to support the smaller Farmer Jacks.)

And home again. Deb is already home. Deb cooks dinner. I relax some more.

===

So I am, as usual, tired: it's a drug week. No more tired than usual, I guess. Just that I notice it more this week because I felt quite good the week before. Either that, or... I'm as tired as ever but I can't remember how tired I really was, in previous drug weeks!

Now I've taken my chemo. Waited a while -- to make sure that my stomach does not have any strong objections; seems okay... Time to get back to bed, to get a few more hours' sleep.

Four drug days done. All good :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Christianity did a lot for love by making it a sin." ... Anatole France

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

practical problem & philosophical prattling

Of the two or three people who read this blog, none are Deb. She gets enough of my wordiness without having to *read* more words. However, Deb is willing to read the blog when I am finally dead... So yes, I will definitely have the last word :-)

Deb prefers to read a paper copy -- and I want to create a paper copy -- so I need to transfer each post to a Word doc, for printing. And perhaps for some formatting and a bit of typo correction. But I don't want to change the words. So, first, I open each post, to copy & paste.

There is no easy way to dump the entire blog to a Word-compatible format! So I have to do it post by post... All 254 posts... so far!

Right now seems to be a good time to start the process. I am at a plateau: health is steady, last scan was clear, next scan is within a month. So, right now, nothing to complain about. Which means, not much to write about. (Look how many words I'm putting into describing that "not much"! :-)

I've started the process of grabbing each post and dumping it into Word. Twenty-seven pages so far... and I've only covered the first twelve days. You know, it's lucky that I plan for three more years, I may need all of that just to convert this blog to a hard copy.

===

I'm giving some thought to "denial" and to whether or not I'm simply denying that there is a real problem. Now that I've typed that, I think, It doesn't really matter. I still try to maintain the positive mood. Whether it's by denial or by acceptance -- the positive mood is important. And seems to be (mostly) working. So, either way, not a problem.

I'm also thinking, Should I be screaming, Why Me!?!? But I'm not. Why not? The "why me" complaint is blaming some external agent for giving me cancer. Why did that ... entity ... treat *me* so cruelly? Noooo...

First, I don't believe that I was *given* cancer. There may be a cause but there was no malicious intent. Second, If there is some entity with the power to give cancer, I just can't imagine that I would be important enough to rate the effort.

So, no "why me".

What I do wonder -- occasionally -- is, Why cancer? That is, how did I get cancer in an otherwise healthy body? I do wonder... But, failing any strong evidence, I go with the scientific opinion of, Nobody knows. So, nothing specific to blame.

And -- more importantly -- there is no past action which could cause me to suffer regrets. It's enough to have cancer. I don't want to also live -- for no matter how short a span -- with regrets for which I daily want to kick myself. No regrets, no worries :-)

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Have you ever noticed that when you hurt yourself -- other people admit that they have done exactly the same thing?

For a few months (years ago) I suffered from plantar fasciitis. You can look it up. (Or just think, painful foot.) Well, I thought, that's a strange thing to have. Until I mentioned it -- and several other people admitted to the same pain.

Cancer is similar: admit to cancer and, all of a sudden, other people also admit to their own cancers. As I said to Deb, There is no need to join a support group, just talk to friends.

I've never felt the need for a cancer support group. Yet I do find it comforting to know that I am not alone. And (with sympathy to other people) I am glad to confirm that my own cancer is relatively benign. Oh, well, yes, it will kill me. Meanwhile -- so far -- there is no pain and no damaging side-effects. (Except from the treatment.)

One other thing that I have noticed: People who have lost someone to cancer are sympathetic and understanding. As are other people. But some of these people *need* to talk. There is a distinct feeling of grief, of the pain of loss still continuing. Talking about the death seems -- to me -- to be something that they want to do. That they need to do.

I feel no need for a support group for myself. Deb met with a woman who had lost her husband to cancer. Being able to talk about the experience with someone who has already been there, did help Deb.

I suspect that a lot of cancer patients and carers need sympathetic listening. I suspect that the listening will be even more beneficial when the listener has personal experience of the situation.

Support the support groups. For those who need them -- they really can help.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Christianity did a lot for love by making it a sin." ... Anatole France

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

change for the ... ?!

Thursday, we visit the oncologist. It's the regular how's-it-going meeting. Though she never actually asks, How's it going. I guess it's up to me to raise concerns, or to stop acting so obviously cheerful.

The only point of interest is the direction of future treatment.

I'll have another MRI scan within the month. If it's clear -- ie no visible brain cancer -- then I could stop the regular drug week schedule; my choice. If tumours have re-appeared then I may as well stop the regular drug week schedule... Hmmm... I suspect that next week's drug taking will be the last for a while. Which will be a relief!

The last drug week went quite well, with no debilitating side-effects. Except extra sleeping. But it will be a relief to stop swallowing pills.

One small worry... or reminder to worry: DrT wants this next MRI for before she goes away for a conference. Even though it'll be just two months since the last MRI. Does this mean that new tumours could appear within two months? Or perhaps that the scans are largely pointless since tumours will reappear anyway, sooner or later?

Thinking about that, I re-read a bit of Wikipedia, about Temozolomide and GBM. It reminds me that I am definitely going to die... How depressing!

Enough reading about death and disease. It just reminds me that I'm probably in denial... or in denial about being in denial :-)

Time to get back to enjoying myself !

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It's possible that I repeat myself. In life and in this blog. (And yes, I know that by writing that, I am repeating myself.) With the family I sometimes have to force myself to not repeat ancient anecdotes which I know they have heard before. The possible repetition within this blog is my only excuse for the following:

I wake from a dream with a clear memory of the final sentence. The rest of the dream is forgotten. It ends, with one of our kids telling me, That's so old that it was old when you *first* said it...

Even in my dreams, the kids are both cheeky and perceptive !

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

"Christianity did a lot for love by making it a sin." ... Anatole France

===

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

post-rogaine recovery

Saturday was the rogaine. Sunday we were still tired enough to decide, no we won't go orienteering. Monday I pottered round, doing a few things that needed doing. Not feeling too bad. Tuesday... I'm still tired!

Most of today's tiredness -- I think -- is due to getting up early. Early enough to be ready for toddler-watch, that is. Then a full day of toddler-watch. Physically I am -- I believe -- recovered from the rogaine, so that's good :-) Recovered except for a wish to fall asleep during the day, that is... But that's hardly unusual.

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And now: it's about time to update my "Current Status"... last Status was in October last year.

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Current Status as at 1st May 2018

This is my current situation. If anything significant changes, I will post a new status in a similar format. Then I will replace the Current Status page, to provide a quick look at how I am, "today". The immediately previous status was posted on 13 Oct 2017.

​​

Situation: stable

 

... I still have brain cancer, GBM. This will kill me, sooner than if I did not have a cancer. The single tumour was removed and the general area treated with radiation & chemotherapy. I am now on a monthly cycle of chemotherapy -- swallowing Temozolomide tablets -- one week in four.

 

... I also have testicular cancer. This is harmless -- relatively speaking :-) The cancerous testicle was removed and the spreading cancer (in my lymph nodes) was treated with radiation.

 

... MRI & PET scans from March 2018 show no signs of new cancer. The testicular cancer is not expected to recur. The brain cancer *is* expected to recur. And, ultimately, to kill me.

 

I will *not* die immediately. I may live for months or for years. Just... I have a shorter life expectancy than if I did not have brain cancer. For convenience I plan for a Life Expectancy of "3+1+n".

 

That is:

 

... from Today I expect to live for another Three Years, One Calendar Month and an Unknown Number of Days. This expectation is -- statistically speaking -- optimistic.

​​

Physical Status

 

I am feeling very well, though I tire quickly. Quickly compared to pre-cancer a year ago, that is. I am back to jogging... occasionally. Two weeks ago I completed an 8km fun run. Last weekend I walked (with Deb) 19km on a bush rogaine. Finished tired but otherwise undamaged. Physically, I believe that I am fully recovered from both surgeries, with no direct effects from the cancer. But months of very little physical activity has left me horribly unfit.

 

Mental Status

 

I believe that I am as mentally alert as ever... with some exceptions. If I can't finish a crossword -- I am happy to give up. I occasionally have trouble remembering a word -- but I suspect that is really age and very limited conversations. That is, I don't talk to many people so little-used words drift to the deep dark places of my mind.

 

I am still enjoying the intellectual aspects of "the adventure": a chance to go where every person will eventually go -- but with plenty of time to examine the scenery. Though there is currently not much happening -- probably just as well ! -- so the adventure is a little boring.

 

I sleep soundly (with the usual "old man" trips to the toilet). I often sleep during the day -- but not so much if there is something to do. Boredom -- and a reluctance to start anything new ! -- make me sleepy.

​​

Emotional Status

 

Positive -- with occasional flashes of disbelief and worry. More worry for Deb than for me... though that translates into me worrying about what I should do for Deb. In particular: I know that *I* can live comfortably till I die. But after that, what about Deb ?

 

I try to enjoy life while I can -- and to ensure that Deb has good memories; it seems to be working.

 

I am still glad that it is me dying of cancer. And not Deb or the kids.

 

The March scans show that I am clear of visible cancer. Next scans will be in June. Meanwhile, I continue chemo. And seem to have the drug side-effects under control.

 

 I still believe that Deb worries about my impending death more than I do. I can see inside my mind, I know how I am feeling. Deb can only watch & worry. And look after me :-) At present, really, I am living the dream: Deb looks after me (as she always has), friends and family are concerned, thoughtful, getting on with their own lives, other friends and acquaintances express care and concern or avoid the conversation (all good reactions).

 

That's my status right now. If it changes, I will post an updated status to the blog and update the Current Status page.

 

Unless, of course, my Current Status has changed to Dead :-)

 

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

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"Christianity did a lot for love by making it a sin." ... Anatole France

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

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/