training? ha!

I'm supposed to be training for a fun run. So I do... nothing special. 8km round the lake, now and then. No matter how much I "train", it still takes me an hour and a half.

On one run I have "a funny turn". Best I can describe it is, I suddenly feel very sick but in my head and mouth, not at all in my stomach. I'm pushing a bit faster than usual.

I slow down, rest and recover then carry on.

Later, I check the record of my heart rate. Most of that run was in the mid-120s, It slowed to 110 then recovered.

But no "feeling of impending doom", a sure sign of a heart attack (so I'm told). If anything, I feel so rotten that I completely forget my *normal* feelings of impending doom :-)

other days, I've run for an hour with even lower heart rate.

On today's run I'm very aware of how I'm feeling -- and it's all very normal.

So, who knows. Just a brief time of feeling really rotten. Then okay... and that's something to be glad about :-)

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


Happiness is wanting what you already have
   

why blog?

For those who came in late:

This blog is a daily (or whenever I get to it) record of

(a) holidays

(b) how I deal with terminal cancer.

For (a) it is my travel journal. Intended to be a memory jogger. It may or may not be accurate or complete but it is timely.

For (b) in particular it is all about the exact time of writing. There is no claim to accuracy nor consistency. But it makes me feel better to get it off my chest.

Dr Nick Lethbridge / Consulting Dexitroboper

===

We know that the nature of genius is to provide idiots with ideas twenty years later... Louis Aragon

..Dying for you to Read my blog: notdotdeaddotyet.blogspot.com

what is it?

Specialists are debating my diagnosis.

The MRI scan analysts favour a tumour. Deb heard it as the cancer doc favouring a necrosis diagnosis, I didn't notice that. True diagnosis will only come if my head is opened, no-one favours that.

What I did hear is that the cancer doc sees necrosis as a "better" problem. I disagree, strongly.

I see necrosis as an ever-growing death of brain. Once it's dead -- it's dead. If necrosis is removed -- that bit of brain is gone forever.

A tumour, I see as a lump of cancerous cells growing to crush the "good" brain.

The doc says that the brain itself can deal with necrosis (I'm not sure how). To me: remove a tumour -- and the "good" brain is still there.

Either way -- the new beelzebub drug may slow it down. Not cure, not stop, not prevent recurrence. And no matter what -- the original cancer is still classed as incurable and terminal. Oh well:-( But so far it has been less aggressive than advertised. So there:-)

Dr Nick Lethbridge / Consulting Dexitroboper

===

I'm nobody's fool. Care to adopt me?

..Dying for you to Read my blog: notdotdeaddotyet.blogspot.com

Bevacizumab

Okay, I checked Wikipedia. I ignored all the possible side-effects, they are the usual, horrible, possibilities.

But does it work?

Here's what Wikipedia says:

(1) Bevacizumab slows tumor growth but does not affect overall survival in people with glioblastoma [that's me]

(2) [In 2009] ...approval for the treatment of recurrent glioblastoma multiforme [mine]

(3) A 2018 Cochrane review deemed there to not be good evidence for its use in recurrences either.

So. Sooner or later the GBM will kill me -- but the drug may delay the end. That's good :-)

===

I wonder why the doc has only just mentioned the drug?

===

btw: No way I'll remember that name. So I'll think of it by the name that it makes me think of: Beelzebub...

Dr Nick Lethbridge / Consulting Dexitroboper

===

I'm nobody's fool. Care to adopt me?

..Dying for you to Read my blog: notdotdeaddotyet.blogspot.com

July scan results

We're just back from getting scan results from the cancer doc.

There's nothing urgent.

The scan shows what is probably a tumour. And it has grown since the last scan, one dimension has grown from 4cm to 4.5cm. So that's bad.

More bad: it's getting close to an important blood vessel. (Actually, I can't remember what it's close to but, if the tumour crushes that, then I could get symptoms. More on symptoms below.

The scan experts say that it really looks like a new tumour (or regrowth, I guess). The alternative is radiation necrosis. I prefer tumour but we can't tell without opening my skull.

So we continue to wait and see... with a new option, a drug.

Is this a new drug? It's never been mentioned before.

It's called Bevacizumab... (I had to check that, I'll never remember it.

Apparently it can slow down tumour growth *and* necrosis spread. So it's good no matter what. And it can be used for as long as it seems to be having any effect. Well, used with five pages of possible side-effects :-)

At present I have no symptoms (good) but steady tumour growth (bad). While I'm still feeling fine, we'll do nothing.

So the plan is:

For now, do nothing.

Get another scan in 2.5 months.

Then re-plan.

If I get symptoms: immediately re-plan. 

If I get symptoms, we're looking at: the drug (it's three weeks of intravenous injection :-(

With a scan before and after.

Repeat scan/drug/scan until..??

Hmmm, not much of a plan :-(

Symptoms:

We nailed the doc down on possible symptoms...

It could be like a stroke (good-oh, all my old friends have had them:-) 

Headaches is the #1 possibility. 

Or dizzyness. Or weakness on my left side. ie, like a stroke.

So it's all up to me: to avoid those suspicious symptoms. Easy.

Dr Nick Lethbridge / Consulting Dexitroboper

===

I'm nobody's fool. Care to adopt me?

..Dying for you to Read my blog: notdotdeaddotyet.blogspot.com

current status

We're just back from seeing the cancer doc. I'll put that in a separate post.

I've updated the current status page in this blog:

as at 18th July 2024:

I'm well... well enough :-)

The cancer is still in there... waiting. Waiting almost eight years so far, it's a bit embarrassing.

Physical:

The MRIs show a shadow on my brain. Growing but slowly. The experts believe that it is a tumour. Necrosis is possible but less likely. Both are serious health threats.

There's nothing to be done until I start showing symptoms. Meanwhile: wait and worry.

When there are symptoms, we consider surgery and/or a new drug. Still delaying tactics not a cure.

I have limited vision to my left. It's the missing bit of brain that is the problem. That will never be fixed. 

I still run -- slowly but regularly. 

Overall... I think I'm doing okay... for my age :-)

Mental:

Again... okay for my age :-)

I read, write, complain about the state of the world.

I do have problems -- most of which are because it can be difficult to see things. I see okay but miss whatever is on the left. The start of words, for example. It's hard for me to quickly look at and understand something.

But I think -- I hope -- that most of the mental problems are related to vision.

Emotional:

Right now, I'm feeling fine.

Yet there is an underlying feeling of... mild panic, concern, fear.

But here and now -- very happy.

Keeping busy. Reading, writing.

I can't claim to be feeling positive.

Nor am I feeling negative.

I'm making plans but only short-term (months).

Dr Nick Lethbridge / Consulting Dexitroboper

===

I'm nobody's fool. Care to adopt me?

..Dying for you to Read my blog: notdotdeaddotyet.blogspot.com

optimistic

one of our sons likes to go with us when we visit the cancer doc. this time he's away on holiday with his family. Before he left he asked what he should do if my next scan was "bad". enjoy your holiday, i told him.

I've had the scan. We, deb and I, see the cancer doc in a few days.

i still have no symptoms.

I'm already mentally composing the message to tell the absent son that all is well.

My mood is good cheer overlaid with feelings of doom. much as usual :-)

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


Nothing in life is to be feared. It is only to be understood
   

what will kill me

funny, really, terminal cancer for several years and I never wondered, how will it kill me?

it's a terminal disease, I never thought past that.

till i had a thought: a tumour grows, it squeezes the brain... until it squeezes something vital. then i die.

where it is, i expect the tumour will squeeze my vision long before it expands to crush something more essential to life. a lucky location.

The radiation necrosis caused more actual and immediate damage. (sort of).

so i'm waiting for a cancerous tumour to crush my brain :-)

Well, I'm pleased to understand that... whether I'm right or wrong. It's an explanation which seems reasonable. I do like to understand things.

And now i think about it: having a known terminal disease does mean that i worry less about all the other things which could kill me :-)

btw: morbid thoughts? no, just me enjoying analysing and understanding an interesting situation.

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


Nothing in life is to be feared. It is only to be understood
   

scan and check

I do an orienteering course, about 3km -- following Deb's sister. It's great to be able to go bush.

Another MRI scan. Won't know the results for a week or two. Scan or no, still no symptoms, unless being tired is a symptom :-)

The cancer doc needs a new referral so I visit the GP, always good for a pleasant chat.

My heart, lungs, blood pressure all check okay.

I pass the time by writing some short stories for a competition. It's surprisingly satisfying to know that "someone", the comp website, will at least accept my stories.

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


Nothing in life is to be feared. It is only to be understood