even more tired !

I seem to have been sleeping for most of this last week ! Here's how I understand it:

The anti-cancer chemo tablets attack cancer cells. They also attack non-cancer cells... The pills are "cytotoxic" -- that is, toxic to living cells. It's essential that the chemo attacks cancer, attacking other "good" living cells is a side-effect.

My body now needs to replace and rebuild the "good" cells. This takes energy. Energy goes to cell rebuilding so I'm left with not enough energy to stay awake. Which means that -- when I am *not* swallowing chemo -- I will have more & more energy for staying awake... once good-cell regrowth has been finished.

I've just finished my week of chemo... cells have been destroyed, good cells are regrowing... so I have no energy to spare for staying awake. Cell regrowth will continue for at least a few days... then I will start to stay awake for longer! Until it all starts again with the next week of chemo, in three weeks' time.

Of course it's also possible that I'm sleeping a lot because I'm old :-)

===

Helping Deb with toddler-watch today, I'm worried that I'm rather boring. It can't be very entertaining when I sit round a lot and fall asleep after lunch!

Then we go to the nearby playground.

Grandson insists that I accompany him & Deb. He insists that I take off shoes & socks to join them in the sandpit. Then he seems perfectly happy when I just sit near them, and watch. Makes me feel a lot better :-)

===

Swimming lesson today (for grandson). The carpark is full. Deb misses a reversing car, doubles back -- and is beaten into the single space :-( Deb makes an exclamation expressing disappointment... Toddler repeats what he thinks he heard, "Oh bump!" Oh, yes, that's definitely what Deb said... there are definitely speed "bumps" in the carpark :-)

===

In a previous post I mentioned that I started to watch Altered Carbon on Netflix. A tv show is soooo slow. Since then I have reread the complete book -- at my own pace. So much more satisfying.

Oh, and as far as I can tell: The first scene of the tv series -- two people in a shower -- was invented for tv, not by the AC author.

 

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

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

===

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

soooo tired !

Monday, I'm tired... Very, very tired. I spend all morning sitting in a comfortable chair, reading, sleeping. I spend all afternoon in a different comfortable chair, reading, sleeping.

Was it a tough weekend? I think so... It seemed okay at the time but it wore me out. I spend all Monday recovering.

Not helped by the start of another drug week. I was up between 3 and 4am to take drugs. Plus a bit more awake time -- to make sure that my stomach seems settled. No worries, I'm fine :-) Just tired.

Deb (when home after work) asks, will I be okay for grandson minding on Tuesday? I hope so, I enjoy it. It does make me think:

I enjoy helping Deb mind our grandson. He's such a [fill in a positive attribute] child, such a pleasure to look after. Yet -- now I think about it -- half the pleasure is being with Deb.

===

In between reading and sleeping I decide to watch some tv. Or, rather, Netflix. I'm a fan of science fiction so I start with Altered Carbon... I did enjoy reading the book.

Half way through the credits and I'm thinking of turning it off. But resist. Three minutes into the show itself -- in what is apparently a significant shower scene -- I give up. Booooring!

If a book is that slow -- I read faster. There is no speed control (as far as I know!?) on Netflix, I have to watch at the one, fixed, slow-but-highly-significant speed. Yawn!

I once did an online course which allowed up to eight times faster viewing. The picture moved fast, the sound was fast but still clear. That's what I need! Well... that's a part of what I need...

I come back to Netflix, watch The Incredibles. No "significant" -- ie slow -- introduction here. Straight into the action, straight into entertainment. I watch it till Deb comes home.

I never really enjoy the slow start to tv and movies. At home, with tv, I'll be settling down (or possibly reading) until the introductory titles are done.

Also... I prefer my entertainment to be light. That has always been my preference. It is more so now. I don't mind a bit of tension, even suffering -- as long as there is a happy ending.

With a book, I can read as fast as I like, to get past the dark parts. Can't do that with tv. Oh, and I do like a definite conclusion: after the beginning and the middle I expect an end... which is very unlikely with a tv series. (And less and less likely with a fantasy novel.)

I'm just hard to please :-)  Which is part of the reason why a lot of my current reading is *re* reading. I'm re-reading books which I have read before. Which I know that I enjoyed. And which I know have an actual end to the story.

===

Now I've swallowed my pills. Waited a while to be sure my stomach has settled. It's time to get back to bed...

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

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

===

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

books, shakes, side-effects & a rogaine

In an earlier post I mentioned a couple of books about cancer. Just in case someone who actually has cancer trips over this blog, I'll now name the books. (Though I do hope that you, my reader, do not have cancer. Reading this blog may spoil your enjoyment of the experience.)

... "Before and After Cancer Treatment" by Julie K Silver

This book is for the "cancer survivor" who is getting back to a more normal life. There is advice on understanding your physical, emotional, mental and spiritual states -- and improving them. To me it seems that the advice is generally good for cancer survivors -- and for people who just want to feel better.

... "Never Say Die" by Chris O'Brien

The author died of my type of brain cancer -- and was in denial all the way. He wants every prognosis to include "hope" -- that is, a few reassuring lies about the chances of the patient surviving. I prefer truth -- then the doctor can help me, the patient, cope with the reality. It's also disappointing that the author -- a respected cancer surgeon -- eventually dumps all scientific training and attempts a couple of "quack" cures. With all his medical expertise he does not even mention any attempt to scientifically test the effectiveness of these "alternative" treatments. On the other hand -- it's reassuring to read about another person who went through a similar treatment process to my own.

===

In another post I mentioned the hand tremors. I was not sure that I still had them... Well, I do! In both hands. It comes and goes. I noticed it when I was making a cup of tea and spilt some milk. Still, no use crying over that... :-)

===

DrT has allowed me to stop taking the anti-epileptic-fit tablets. I was on two a day, now I'm on one a day, next week will be none. Already I can notice some changes. No, it's not that I'm now having epileptic fits...

Having halved the anti-fit dosage -- I am less sleepy. It's been only a few days -- but I have done less falling asleep during the day. (Right now I'm wide awake in the middle of the night. But that's only because I've swallowed one tablet and need to wait before taking the four chemo tablets.)

Another side-effect of the anti-fit is irritability. I hope Deb doesn't expect me to now be less irritable :-(

I've suspected -- and am now getting evidence -- that the anti-fit is also affecting my digestion. Not necessarily in a bad way, just changing it.

Yes, here we go with more poo analysis...

Okay, my digestion has been stuffed around. Yet -- in the weeks when all seems to be going well -- there are noticeable differences to long-term normal operation. For one thing, it smells different.

No, I don't go sniffing my poo. It's just that the smell is there, I notice it, I notice when it is different. In recent months my poo has smelled like bitumen. Yes, it smells like the stuff on the surface of roads. Since reducing the anti-fit dosage, that smell is less obvious.

Does your poo float? Mine used to, mostly. In recent months my poo has not floated, it just sinks to the bottom of the bowl. (Again, I don't deliberately stare at my passed poo... it's just something that I notice. And remember.) Now -- on my reduced dosage -- the poo is starting to float again. Interesting...

Okay, not a topic for dinner-time conversation. But interesting... in my opinion :-)

And if the poo is returning to pre-cancer normal -- it's also a sign that my body is shaking off some of the side-effects of treatment. These side-effects may be perfectly harmless. But I prefer my body to work as it has -- successfully enough -- for most of my life.

===

Urgh! just swallowed four chemo tablets. I'll wrap up this post and get back to bed for a couple of hours...

===

On Saturday we -- Deb, her sister and I -- went on a rogaine. (For the uninitiated, a rogaine involves walking through the bush for many hours, trying to find points marked on a map. It's fun. Really!)

We walked for almost four hours, covered just over nine kilometres, climbed 257m. That includes time for a picnic in the bush. And I've found that bushwalking is about twice as slow as walking on roads or trails. We averaged -- in the past -- just over 3km per hour.

By our previous standards, yesterday's rogaine was quite slow and not very far. By current standards -- it is far enough. For myself, I am pleased to be walking so far! And it was a most enjoyable day... it's great to get out in the bush again :-)

===

And btw: You may have noticed that I don't name names. Except for "Deb" because it would be silly to continually refer to "my wife".

A blog is a great place to tell the world -- or my reader -- about people, places and activities. I just don't want to add to the enormous amount of personal data which is displayed for all to see. For myself, I don't mind. The benefits of "getting it all off my chest" outweigh the embarrassment. And the embarrassment will end soon after the last posting :-)

For other people, it does not seem fair for me to post comments which allow complete strangers to say, Oooohh, look what so-and-so once did.

Except for Deb. Who just has to put up with her name in print.

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

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

===

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

all good news ...

The results of my scans are in: no signs of cancer! Phew :-)

So it's back to chemo, one week in four. Then more scans in three months. Since I can't tell what the cancer is doing till I get scanned -- and ignorance is bliss :-)  -- I can relax for the next three months.

So... I'm feeling good !

===

And an aside, from today's comics: I also had an IQ test. Luckily that one came back negative.

===

Way back, I mentioned that I had a touch of the shakes. A tremor in the hands that I only noticed when I attempted to carry a fork-full of food to my mouth. I also had trouble standing on one foot to, for example, dry my feet after a shower.

The hand tremor may still be there, I haven't noticed. But I can now stand on one foot! Well, at least long enough to dry my feet without having to fall down.

===

I ran a few small hills today, it went quite well. Okay, I'm certainly feeling -- now -- as though I have run a few *mountains*... but I had no great trouble on my first hills for quite a few months.

===

I'm okay to drive again! And, a related matter, I'm about to taper off the anti-epileptic-fit pills. The pills that make me tired and irritable... Oh well, there goes my excuse.

The consensus is that the fit was caused by the brain tumour. Pressure on the brain. The tumour is gone, I may be okay. I'll start slowly... I agreed with my son that I will not drive my grandson anywhere. But for everyone else on the road: look out!

Of course if I have another fit, I'm back on the pills. And out of the driver's seat.

I'm looking forward to driving again. But I must admit -- it's nice being driven round by others :-) Sometimes by friends, lots of times by Deb, to orienteering & rogaining by Deb's sister. I'm a terribly nervous passenger but -- in the city -- I'm a stressed driver.

What I'm looking forward to is the *freedom* of being able to drive myself. Even if I don't take advantage of that freedom.

===

It's been a good day! And I'm sure there's some more good news that I've forgotten. But that's enough for now :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

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

===

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

it's all in the attitude

There's the well known "grief cycle", the stages a person may go through as they deal with a personal disaster. It's usually applied -- I believe -- to dealing with the death of a nearest and dearest.  Since I am clearly my own nearest and dearest, I wonder if the Kubler-Ross Grief Cycle applies to me...

The final stage is "acceptance", where the griever explores options, puts a new plan in place and moves on. My options are limited. I'm following other people's -- doctors' -- plans for treatment but making my own plans for my own life. As for "moving on"... well... that appears to be the final stage, the one I want to avoid! Nevertheless...

I like to think that I am at this final stage of "acceptance".

More than that, I like to think that I *choose* acceptance.

Yes, I have moments of -- for example -- fear... irritation... anxiety... All words on a grief cycle slide from the web. When those nasty moments hit I say, go away! If that doesn't work, I find that a long sleep brings me back to my preferred, more positive attitude. Or I follow Deb's advice, to go to "my happy place", to remember a time and place which cheers me up. That's easy: here and now, married to Deb, is my happy place :-)

I still worry more about Deb -- and even the kids -- than I do about myself. When I'm dead, I'm dead. But Deb will have to look after herself. Is there something I could do to make that easier? (Yes, lots. But that leads to another negative, a feeling of being overwhelmed.)

If I am at "acceptance" -- my preferred attitude -- it has been helped by the way it all happened: I woke up in Emergency and was told that I had brain cancer, it would kill me within a year or two. Straight to the point, good. And I was still woozy from initial treatment, so the effects were somewhat muted. By the time I was fully aware, I had fully accepted the diagnosis and the prognosis.

There is a middle stage to the grief cycle: bargaining. Am I "struggling to find meaning"? Not at all. I have no interest in finding a meaning to my life, let alone a meaning to my cancer. I have no need to "reach out to others", friends and family are already there. (Thank you!)

Part of "bargaining" is, "telling one's story." Yes, I am blogging my story. It's to get it off my chest -- I enjoy self- analysis -- rather than to "tell" my story to other people. If you read this blog -- and find something interesting or even relevant -- then I'm pleased. But that's not its purpose... Oh, okay, some posts are intended to be helpful for other people :-)

Though if you meet me in person, beware: I *will* tell my story! I've always been like that... Just let me know when you have heard enough :-)

Two other stages are anger and depression. Yes, I do get hit by the negatives. Right now I am anxious, waiting on the result of today's various scans. But I *choose* acceptance and try to put anxiety on the back burner.

It also helps that I have no other choice -- I do have a cancer which will kill me. (On the bright side, I have another cancer which will *not* kill me :-) The only alternative is if all of medical science is wrong. Though I have made a secondary choice: I will enjoy life as I can and while I can, rather than wasting it on regrets.

And finally, the very first stage of the grief cycle (not that grief follows a fixed path), the first stage is "denial".

It's possible that fear and shock have lead me to confusion -- and avoidance. It's possible that I still don't really believe that cancer will kill me. Actually, I both accept that it will kill me -- and believe that it will not. Classic double-think. Thank you, George Orwell!

So am I in denial?

I prefer to believe that I am at the stage of acceptance. That I do have moments of, in particular, depression. But I *choose* to accept my situation. To select options, to make plans which suit changed circumstances. And to accept that "moving on" is one option over which I have no real control.

Because acceptance -- as I interpret it -- suits my long-standing smug self-satisfaction with my own ability to manage my own attitude.

So there :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

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

===

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

scanned and waiting

This morning I was scanned. Booked in for an MRI and A PET scan. Had a few initials left over so they added a CT scan. I won't know the results till I see DrT on Thursday.

It's our day for looking after the grandson. It was only a couple of days ago -- far too late -- that I realised that I could have asked for a different scanning day :-( So today, Deb has all the fun and exhaustion, I get to lie round all morning.

Deb drops me off, then drives on to toddler-watch. I'm early -- as expected -- with plenty of time for a blood test. It's a regular thing, once every four weeks, to have my white cells counted. The chemo drugs can lower white cell count. So far, my white cells seem to be ignoring the drugs.

I offer my left arm to have blood extracted. Saving the right arm for scanning purposes.

First, an MRI of my head. The scan needs an injection of... something... through a cannula into a vein. For some reason I think of a cannula as a type of pasta. It's really a tube suck in my vein. Various other tubes can be attached for injection of ... various things. The cannula stays in my vein for the MRI and the PET and the CT, they all require different... things.

Different things: One scan needs a "contrast medium". PET needs something vaguely radioactive. These are just things that I hear, I try not to think about them.

I'm held down my a "mask" over my face. The MRI machine is noisy. The machine beeps and roars and thumps. If I were the nervous type, there is plenty about which to be nervous. I just enjoy the sound effects, it makes me feel that something worthwhile is happening.

After the MRI I am lead to a small waiting room for the PET scan. Another waiting patient is clearly not happy, he has some not-nice reaction to whatever is injected. When he leaves, his partner says that he is very nervous. It's pretty clear that she is also nervous.

I'm well past being nervous. I've had a blood sample extracted, I've had the cannula inserted, I've had a finger pricked for blood sugar level (4.7)... As far as I'm concerned, the worst is now over.

The first step of the PET scan is to have something pumped into my cannula. I sit still for an hour while this is slowly injected and given time to circulate. It's a cold room but I'm given a warm blanket.  I'm asleep within minutes. My bladder wakes me up a few minutes before the hour is up.

I'm not even going to mention the four or five visits to the toilet... (Oh, yes, I *am* going to mention them.) The PET scan requires six hours fasting plus drinking lots of water. Add the fact that I'm an old man. And nervous... Lots of visits to the toilet.

Then to a different room for the scan itself. This machine is a lot quieter than the MRI. I lie back and relax.

The PET scans my body -- and, possibly, my head. I just do as I'm told (arms up, arms down, breathe in, breathe out...).

At one stage the special formula is pumped in via cannula. I feel a chill across the back of my mouth! The chill spreads then quickly fades. I had been told to expect some sort of reaction. Having it start in the back of my mouth is surprising.

Then -- in the same scanning machine -- I'm CT scanned. Not that I can tell the difference, I just lie there. It's possible that the movable base has moved me to a different position within the scanner tunnel but I can't be sure... I'm told to close my eyes, so I do.

And then it's all over.

I rest & recover for a few minutes.

It's lunch time. On the way out I consider lunch, or just coffee. I'm not really hungry and I have water to drink. I know that a bus passes at 12 minutes past each hour, that's just 20 minutes from now. I walk to the bus stop. (Yes, I do go to the toilet again on the way out.)

And I'm home again...

Where my "not really hungry" translates into several helpings of leftovers from the fridge. Plus several cups of water, tea, coffee.

Strangely enough, I skip my usual afternoon nap. Perhaps I relaxed enough in the morning? I do catch up on a few emails. And have time to miss minding the grandson.

Till Deb comes home and reminds me how tiring it is to mind a toddler. Of course Deb coped excellently by herself :-) Though she did seem glad that at home, she can go to the toilet without an accompanying toddler.

===

And so, I'm thoroughly scanned. Has either cancer returned? Are there nasty spots on the scan results? Or will I have another three months of no-visible-cancer until the next set of scans... I won't know until I see DrT, later this week.

Am I nervous? Am I perhaps a little scared of discussing scan results with the oncologist? Yes. Is this my first time? No... I've been scared before...

rofl

For now, it's wait and see. Or, rather, wait and be told...

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 read a lot of books

I read a lot of books. At least, it seems to me like a lot of books. I have read, rated and reviewed more than 720 books since April 2009.

I was tired of wondering if I had read a book before. Or whether I had enjoyed a book by an author with a familiar -- or unfamiliar -- name. So I started tracking them. It became my first blog :-)

Okay, so I read a book every four-and-a-half days. Where is this going?!

For Christmas I was given three books. (Given? I bought them, gave them to Deb, told her that I wanted those three books for Christmas.) Since then I have read plenty of books. (Quite a few books I have been *re*reading. I find that I enjoy the "comfort" of the familiar.)

Of my three "Christmas" books, I have read two... The third book is, as yet, unopened. Okay, I don't like to rush the reading. I like to draw out the pleasure. I've been reading library books and re-reading old favourites from my home bookshelf.

After two months -- why have I not yet read the final Christmas book?!

One of the Christmas books is part of a series. I expected it to fill in a gap in the overarching storyline. Instead, it filled only a third of the gap... So I have two more books to buy... and then a few more books which continue the saga. And there are other series, by other authors, which I would like to read more of.

But...

Do I want to commit to reading books which complete these series? It will take time -- to find the books then to read them. Will I have that time?!

Next week I will have MRI and PET scans. If they are clear, I will have three months till the next scans. Three months of, So far so good. If the scans show more cancer then I will have -- perhaps -- less time. Will I want to spend that time reading?? Well, yes, probably -- but I'm not yet ready to commit that time.

Funny, really. I'm still quite cheerful. But with an undertone of, What will the scans show? And an uncertainty -- an unwillingness to commit -- until the scan results are in.

I expect that it will be the same every three months: uncertainty until the scans are analysed. Still... every set of scans is another three months passed... And -- each time it happens -- that's something to be glad about :-)

===

Here's another story but it's really the same story:

The family will tell you, I don't buy new clothes. While clothing still hangs on and offers adequate protection, I keep on wearing it. Right now, I'm wearing an ever-decreasing number of items of clothing. Even I have to throw out some rags.

Worse yet, I put on weight. Pants that demanded a belt now stay up by themselves. Any more stomach and I will not be able to close them at all.

And I am more reluctant than ever, to buy new clothes. It's the same story as with books: is it worth it to buy new clothes? I'm waiting on the next set of scans... and trying to not put on any more weight.

If the scans are clear -- I'm off to the bookshop :-)

But don't expect to see me in a new set of clothes... After all, I can still do up my pants. Just. So who cares how old they are... Unless the family tell me how wrong I am :-)

===

Here's something different about books & other stories:

There are plenty of websites telling me how to cure cancer. Lots of them are written by "cancer survivors" -- who generally have (or had) a completely different sort of cancer. The worst are scam websites promoted by people who had conventional medical treatment then went to wacko "treatments" which are untested, untried and certainly unproven. These scam sites gloss over the medical treatments and claim a miracle cure by one or more of the treatments that they used.

A far better book -- also by a cancer survivor -- accepts that the author's life was saved by medical science. She then describes ways in which a cancer survivor can get her life back on track.

You may be cured -- or in remission -- but the disease and the treatment do knock you round. (I'm lucky, the worst *continuing* effect has been that I have totally lost all fitness.) This "better" book is for people who have "survived" cancer and who now have a more normal life expectancy.

Deb has ordered a library book which was written by a cancer patient who then died of his cancer. He had "my" form of cancer. He had brain surgery five times. (I have only had one bit of brain surgery. So far.) He had radiotherapy and chemotherapy. Wrote a book about his cancer. Then died, a couple of years after the initial diagnosis.

I wonder how close to death he was when he stopped writing? Because that's the bit that interests me. Not that I'm fascinated by dying... but that is the bit that is missing, in stories by "survivors".

Could be an interesting book. Though I already disagree with its title. More later, when I see the book, after Deb has read it.

===

And now for something completely different:

I'm onto a new brand of the same anti-epileptic-fit tablets that I take twice each day. My drug dealer -- Deb -- reads on this new packet, that the drug may make me drowsy. Drowsy!? And I take two each day! No wonder I'm irritable... Or... No wonder another side-effect of this drug is irritability -- I'm annoyed that I am always drowsy!

btw: Most of the last paragraph is intended to be tongue in cheek. In case you can't see me smiling.

Anyway... I go for a run on Monday but am too tired to run on Wednesday. Too tired? Must be the drug! Can't just be that I'm lazy & unfit... Then Deb goes for a run on Thursday and so I also go for a run. That's how my training goes: I run because Deb runs.

My own run is a bit faster than my last few runs. I am worried that I have not told Deb when she should worry if I am not back, so I worry that Deb will worry too soon. As a result I push a bit harder and run a bit faster. Still slow but not as slow :-)

===

Today we go for a walk in the bush.

Deb wants to walk a there-and-back of 12km, 6km each way. I say, let's walk to an unmissable feature at 3km and then decide whether or not to walk any further.

Strangely enough, this makes me feel a lot better about the walk...

Twelve km will, I feel, be a hard slog. Six km will be easy. Six km with the option of up to six km more -- just feels okay. Doable because there is the option of turning back.

The mind works in mysterious ways!

The weather is fine, warm and pleasant. The bush is beautiful, peaceful, we see just half a dozen other people on our walk.

We turn back after five km -- just one km short of our furthest aim. A total of ten km in several hours of very pleasant walking. I'm tired but okay at the end -- with a ten km target distance for next week's rogaine.

And more: The walk is quite flat, just some long but gentle rises. I find that I really do need to do some *hill* training... When I can be bothered. Or when Deb sets the example :-)

Dr Nick Lethbridge / Consulting Dexitroboper

...        Agamedes Consulting / Problems ? Solved

===

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

===

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