stupid doctor

deb phones the cancer doc to confirm that we will not be turning up or further treatments which have very very small chance of doing anything worthwhile.

I think deb is upset by it. getting practical on my impending death.

poor Deb:-(

for me, death is still a very vague concept.

I'm confident that it will be slow and painless

but I now sleep, or doze, all day. and and any walking at all makes me puff and pant. I can still keep going... slowly

today I make it out for coffee and cake :-)

... but the 

effortinvolved is 

very annoying

the cancer doc tells deb that I will not be paralysed legs down.

as far as I know no-one ever suggested that.

the cancer doc is an idiot.

I suspect that she is not interested in cancer. she spent a lot of time discusing how my dex dosage, or the IV could be slowing me down

when the brain surgeon blamed cancer getting into my brain stem the cancer doc effectively denied the possibility.

I suspect that she knows nothing about brain cancer.

 it also  seems that she does *not* enjoy talking with patients about their cancer.

right... I do *not* like her.

deb says, she kept you (me) alive for seven years.

no. I stayed alive while the doc ticked boxes in a list of what to do next.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

strange times

the last few weeks have been quite odd. 

things happened which made a bit more, or less,  sense later.

I'll brain dump some high and low points:

from memory,  so accuracy is not guaranteed.

I spent some months having bevacizumad by IV once every three weeks. 

after the first dose the tumour shrank by about 20%

I think of that shrinkage as due to to power of positive thinking.

after that, the tumour continued to grow despite weekly IV.

no useful effect, so we cancelled further IV.

later,  deb tells me that we have also cancelled starting with a second drug, lomustine.

I know a lot about lomustine but cannot remember ever being told. I suspect that I was asleep when it was being discussed.

I did not hear any discussion of lomustine.

I sent an email telling the cancer doc that I am deaf.

it is possible that the ten pages that seem to be a blank drug schedule are the doc's attempt to give info to a deaf patient.

it worked well. I was able to yo to Wikipedia to read up on the drugs. and ask an expert whose voice I can hear.

the two drugs have similar effects:

very small chance that tumour growth may be slowed

small chance of a few months of extra life. some chance of nasty side-effects.

every day I feel weaker and wearier. this is just death by cancer. I don't notice any other side-effects. I'm sure I will live those few extra months, eventually :-)

so the drugs are having no  effects

life goes on and so do I, so far

I don't  regret getting off the drugs.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

weak, weary, sad

being weak and weary is an expected part of my dying.

possibly exaggerated because I'm expecting it.

no worries, I've been quite cheerful as I doze for most of the last few days.

and today we enjoy an outing to a cafe.

later and I'm reading a book which includes several pointless deaths.when I realise the deaths make me miserable.

I put the book aside and immediately feel better.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

more meeting memory

deb reminds me, I did go in with clear questions... which the doc answered

is this, getting slower and weaker, what will kill me?  yes

are the possible head aches a lead in to something worse?

no...just another aspect of the same slow and steady decline.

phew!

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

treatment

we meet with the cancer doc, to discuss the latest scan results.

and, I guess, to look at future treatment.

Why "I guess"?

I was handed ten typed pages about bevacizumab and lomustine. Handed to me by an unfamiliar woman. no introduction, no explanation.

 a bit later, the doc may have said that the strange woman is the doc's offsider.

what I do learn is that I can closely watch the doc, listen carefully to every word she says -- and have no idea what she is talking about. I'm not sure if it's because I don't like her or if it's why I don't like her.

Anyway, talking with Deb and reading google, those big words are cancer-treatment drugs.

those ten pages are supposedly a treatment schedule -- with no dates, no details. nor any date for a scan to check progress. so I guess it's just ten pages to be binned.

One thing is clear, from the meeting, my tumour has grown

i've been on bev... treatment for a few months. 

in the first month the tumour shrank. Since then it has grown... bigger? smaller? than the original? No idea.

today (the day of the meeting, was an IV treatment of bev...we went on to that. What about the next? in another three weeks?

and should I try the ther drug, lot... capsules.?

according to Google... neither will do much : a low chance of doing nothing much at all

... and the nothing much would be just a few months extra life.

oh, and most of the ten pages is side effects. all of which are, if you get this, go immediately to emergency at your nearest hospital.

so a few extra months of really lousy quality of life.

our immediate response was to leave. and probably stop treatment.

the very first shrinkage of the tumour, I'll put that down to a clean life and positive thinking.

now, several days later, I'm trying to document the value of that meeting.

printed info: nothing I can do for myself. nothing from the doc to say what to do.

google follow up, not promising.

cancer doc value: bugger all.

it's easy to say, no more treatment.

the decision does feel a bit uncomfortable.

I may as well depend on more positive thinking.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

decision

we have a brief discussion on my treatment decision. 

we are both happy happy?  satisfied,at least  

I will stop all treatment. 

neither chemo drug will stop tumour growth.

both come with side effects,  one sounds unpleasant. 

if I get noticeably better or worse, we'll reconsider. 

meanwhile, give my brain a chance to see what it can do unaided. 

===

an alarm goes off.  a reminder that it's time to take a grandson to his after school swimming -- my favourite day of the week :-)

I'm already so slow, and need the walker,  I stay home. 

disappointing.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

cause of death

that subject line is misleading

it should be *probable* cause of death.

...today there  is some very direct questioning of the cancer doc.  I don't want to be caught dead by surprise. 

===

yes, there is cancer in my brain stem. 

at the start of the current IV chemo, it shrank. 

as the IV continued,  the tumour has grown again. 

More of this chemo is *not* likely to stop tumour growth. 

there's a different IV drug that I could try. 

It is just as *un*likely to work.... the tumour will continue to grow. either drug is a real clutching at straws option. 

Or I could do nothing

... stop IV completely. 

... the tumour will continue to grow. 

three choices, each with the same -- probable -- result... a tumour which continues to grow. 

so what about the headaches which I'm warned about? simply a result of a growing tumour which is pushing the brain out of shape

... just another aspect of a growing tumour. 

no matter what I do, a growing tumour is the likely outcome. 

a growing tumour will slow me down, make me weaker.  until,  one day someone notices that I am so slow and weak that I am dead. 

I start today feeling very tired. very,  very tired. 

walking is an effort.  even standing still is tiring. this matches what I expect as I die of cancer in my brain stem. 

easy, slow, no timetable,  completely painless, very annoying. 

==

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

quiet week

I still want the "experts" to agree on what aspect of cancer is most likely to kill me. Only so I can watch and analyse early symptoms.

having posted the thought, I put it aside and forgot what I had posted... very cathartic and effective.

I'm still feeling weak and very tired, but with no new cancer effects.

feeling well enough for regular Cafe outings with Deb, tho I sometimes I need to rest on the walk to the Cafe.

I've  had to miss my favourite weekly outings: taking grandson to swimming after school. just too many hills to walk. I'd take all day!

it's  been a week of no real change. unexciting but good. well, not bad...

I have had beaches (only3/10) on two days so there's a negative... which may be related to what will kill me

... or it's due to reading a lot...?!

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

5. why post?

have I finally reached tho pint which took me to the keyboard?

I woke up.

thought how easy it will be to die.

ignore the cancer doc. she has said nothing about what will kill me. so I ignore her.

there is cancer in my brain stem.

this will make me more tired, weaker.

till I am so tired, so weak, that I die.

already, in the last days and weeks, I have felt more tired. weaker.

all completely painless.

so far, I am following the the surgeon's expectations. 

perhaps the oncologist believes that I will suddenly collapse in screaming agony? if she can't be bothered saying so then

... I'll  stay with the painless possibility.

meanwhile ... over years...

... friends and strangers have all died of "my" GBM.

one pop star had debilitating headaches before he was even diagnosed with GBM. I have no real headaches.

one wrote a book, collapsed in tears, tried ridiculous alternative treatments, died anyway,

I just take whatever treatments I'm told to take.

millions of people die of all sorts of things. thousands die of GBM.

And I just carry on. take the chemo. unexpectedly shrink the tumour.

... and get angry because two experts can't agree on my diagnosis.

I'm comfortable. I'm happy. enjoying life as it comes... as it lasts.

I'm  hoping that friends, family... anyone else, reading this blog or not

... I hope that you a re all well.

and for some reason

... I feel the absolute need to document that thought.

keep well! you lot  :-)

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

4. 4. expert agreement

I sent an email to the oncologist.

asked he to send me an *email* when she and the surgeon agree on my diagnosis.

I think I can, now, understand why they disagree. not just because the oncologist  is an idiot.

now I'm annoyed at their disagreement. but not furious.

happy pills? doing no good whatsoever, as far as I can tell. but why should it improve my mood? the obstacle is still there, just lesser.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

3. angry? why?

this, I think, is the post which must be posted.

I may be just a few days from dying. and dying is so easy.

if depression is at one end of the road... there are several obstacles on that road. each of which makes me angry.

last night I wrote an email which, just by being written, has cleared one obstacle. hmm need yet another post!

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

2. bad eyes

for some reason my new reading glasses really please me. well beyond the barely noticeable improvemen

t in vision.

and so now, when my vision is really playing funny buggers, it is really annoying.

hard to describe but well leave it at that! typos are too easy. I do a lot of proofreading and correcting.

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

1. home alone

I wake up thinking, death is very close.

and very easy.

why am unworried by irrelevant matters?

I also have a feeling b that there is a full moon in the sky but I don't see it.

Full moon? no, no idea what that's about.

But the rest is just demanding to be documented.

over several posts, apparently.

so...

deb is meeting a friend for lunch today. will I be okay? deb wonders.

sure, I reassure deb. I could drop dead while you are out

... or I could drop dead while you are at home. no difference.

if I'm at home I could phone an ambulance, says deb. and I'd still be dead, I reply.

which all loads to, why does deb want me to keep my phone close to hand? so I can grab it and call for help, she says,

in which case the phone should be lying on the floor...so I can reach it if I'm stuck on the floor... again.

these are the conversations we have :-)

http://notdotdeaddotyet.blogspot.com
dying for you to read it :-)
...ranting  http://my3rs.blogspot.com

brain fading, typing blind
if this email is nonsense, pls guess or ask
ndependent Consulting dexitroboper



   

deaf

Deb has just told me that the cancer doc has clearly and carefully explained why she disagrees with the brain surgeon. And that Deb has also told me that the information was passed on to me in our regular doctor-patient meetings.

So from the past few months this is all that remains:

Further, Deb tells me that she, Deb, has already explained all that to me.

... I have no idea what is happening.

... I'm getting deafer and hear nothing.

... the happy pills are completely useless.

brain fading, typing blind
If msg is nonsense pls -- guess or ask


===

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

and ranting: My Three Rs

===