What is wrong with me?

Sure, cancer. And terminal.

But why is it getting worse? Here's  how I understand it:

The cancer began as a hard tumour in my brain.

The tumour occupied brain space, pushed aside good brain. 

This caused actual damage, a sort of short circuit in my brain. This caused a seizure, I collapsed.

My cancer is an aggressive sort so the tumour was removed, radiated, chemo-d. All good, no real problems.

A side effect of radiation was further damage: expanding necrosis. To remove that, more brain was scraped out.

All this was in the visual cortex, the bit of brain that tells me what my eyes see.

The removed cortex was very specific, it interpreted what both eyes saw to my left. So I can't see, or understand what I see, on my left.

All this time, loose cancer cells drift round inside my brain. Impossible to remove.

Finally, some cancer cells find a home, settle down -- and grow into a new tumour.

Still near the original site. No great damage... but the new tumour continues to grow. Slowly.

Until...

For some reason, 

Unknown, this new tumour puts on a growth spurt. Always expected though the timing was was unknown.

The growth spurt expanded the tumour, still in the visual cortex. Caused a bit more damage to vision. I lost a bit more sight on my left. Not enough to really notice. Except...

The cancer has -- without much warning -- expanded well beyond my visual cortex. Into my brain stem, which is a very vital part of my brain. It controls much more than vision, though don't ask me for details.

Still thinking of my cancer as a hard tumour in my visual cortex, I go for a walk. Yes, I notice that it's harder to see to my left. Which makes me swerve as I walk. All vision symptoms. But what I also have is a form of stroke, damage to my brain. To the right, so the effects are all on my left.

Physical Weakness, loss of physical control.

Now the effects of brain stem damage are kicking in.

What sort of damage?

Yes, there is cancer / tumour.

Also... the cancer is causing related brain damage. Swelling. I think of it as bruising, caused by the growing tumour.

My brain is closing down. Tumour and swelling are causing pressure and physical damage to the brain.

Enough! The brain Can't be bothered keeping me upright.

I fall over.

Okay, into hospital.

The cancerour area is cauliflower shaped, far too complicated to allow removal of tumour. Not without risk of death, anyway.

But tablets can help:

Dex reduces the swelling, kepra prevents actual seizures.

All preventative -- there us no cure for this cancer, no chance of removing it.

The swelling is being managed but the cancer is still there, probably growing. In a very dangerous, to me, area of brain.

The brain stem is damaged, cancerous. I may collapse at any moment.

I walk very very carefully :-)

Due to brain stem damage -- still growing, unstoppable -- I will gow more tired. Weaker. And lose more control of my body... gradually growing paralysed.

Until I can't move. Or don't wake up.

But...

I'll start new chemo. Not a cure...

Dex will continue to reduce swelling, kepra to resist seizures. Both maintaining my quality of life (which is currently very good :-)

The next chemo... Beelzebub, a mono clonal antibody, I think...

Should reduce blood supply to the tumour, slow its growth. For weeks or months. Until the chemo no longer works. It's very new 

Treatment, effects uncertain.

With less brain swelling and less chance of seizures -- I'll be fine.

Until I'm not.

And then... I'll be someone else's  problem.

And that's how I understand it. If I'm wrong... I still believe that I'm  right :-)

dying for you to read: notdotdeaddotyet.blogspot.com :-)