Busy day preparung for Op

Seemed to have seen everybody today.

First off I got all the usual checks. Blood tests, Blood Pressure, body temperature and quick strength tests

Next the neurosurgeon came in and told me the show would start at 9 in the morning he then explained the procedure (drill hole, remove gunk, seal up), and offered me a bonus.

My last operation (the Biopsy) five years ago left me with a significant dent in my head. Although this can be used as the base of endless jokes involvingik pick axes and places to store your haircream it has often brought too much attention from kids much to the embarasment of their parents. But more annoyingly it has became a hair trap requiring judicious use of a nose hair trimmer to keed it clear (too much info?)

Anyway the surgeon offered to me a bit if cosmetic work and I accepted on the condition it did not add any risk, I am not that vain.

And of course the last thing the surgeon did was was to get out the marker pen and mark the position of entry (I kid you not, its procedure)

Next along I got an ECG to check to my heart was par for the op and then the anistathist to explain her process. This seems to be by far the most important of all
the processes and the one that more than anything will keep me alive. Of course I am in no way demeaning the man with the knife and the steady hand (i hope).

Last up was a whole bunch of eye tests including, strength, peripheral, colour etc. Because tumour 2 is sitting close to the vision centre of my left eye that wanted chech on any recent damage and later if it gets better or worse. Getting any worse would be a major suprise seeing as I am pretty much blind in my left eye already!

Just had my last Pre-op meal, now its only water until the op is over.
Think I'll grab a shower and cudle up wish a movie and aim for an early night.

Good Night

In Hospital

Settling down in hospital, just a quick post to make sure that I can post from the pad.
Should go to theartre tomorrow morning, today will be checking that I am healthy enough for the operation.

The Aniethesist and Neurosurgeon should come in this afternoon for a chat.

My "Nuchtern" (no food) sign, tights (anti thrombosis) and bumless gown are already sitting on the side.

But for now, at least I can have lunch.

Surgery on Thursday

Just a quick post.

Going into hospital tomorrow for surgery on Thursday to get as much of tumour 2 out as possible. Should not get too many side effect from this one because of a clean entry from the back. Could get some peripheral sight issues on the left but given that I am already pretty blind on that side I probably won't notice it. But of course brain surgery is is never without risks.

If all goes well I will be in for about a week. Hopefully I'll be able to post a couple of short notes while I am in hospital.

Wish me luck.
Ian

About Reading

I have been trying to figure out what has gone wrong with my reading and in doing so having some fun finding out some interesting things about reading in general. These are some hypotheses I have based purely on observation.

• The fundamental unit of reading is the word
• A sentence context is used to build each sentence from words
• Letters are only used where word templates cannot be found
• There are two word mechanisms and I call them Juvenile and Adult (for reasons which will become clear).
• "Juvenile" is a one to one word lookup. This is the initial look up method used for a word 
• "Adult" uses a fuzzy algorithm from the sentence contect to match an initial template to a vocabulary. THIS IS THE BIT THAT IS BROKEN IN MY READING
• Spelling can be used when there is a missing template or a badly formed template (misspelled word).
• The juvenile mechanism and it's associated vocabulary is formed in early life (perhaps up to 12 years old) and one that age is passed new words are not added
• Reading and Writing (and speaking) use totally separate mechanisms
• I believe that reading, writing and speaking are joined together through an Information Context containing Information Snippets which are not word or sentence based but based upon a categorised memory mechanism

This is my picture of what I think  it might look, but of course the clever stuff is going on in the Sentence Context (which holds on to a few sentences I thing) & The Information context (which is the heart of our memory processing). I would love to play with this stuff if I have the time.

So here is my reasoning from observation.

• The fundamental unit of reading is the word

Hard to explain : Without a word there is no context (that is you cannot move forward in the sentence). With my problem I cannot read an "Adult" word without context , spelling alone will not provide context. 

• A sentence context is used to build each sentence from words

See previous explanation

• Letters are only used where word templates cannot be found

This is a bit of a guess, but  my spelling mechanism at the moment is explicit. That is I have to force it and therefore recognise is use. For juvenile words it is never forced, and for adult I have to force spelling when I need.

• There are two word mechanisms and I call them Juvenile and Adult (for reasons which will become clear).

I am pretty sure on this one (see research below). The juvenile words work for me with no problem like simple lookup. These are all very familiar words that were probably learnt in my first 10 years of life. I stumble only on those later learnt words (unfortunately / fortunately my drugs have improved my reading and I can not test as easily now) where context is needed to see the words (adult mechanism).

Further evidence : I did read german but I seem to have NO juvenile words forcing me to use context to get going in a sentence (this was very hard with my broken template mechanism)

• "Juvenile" is a one to one word lookup. This is the initial look up method used for a word 

See discussions about, I can just read these straight through without impediment

• "Adult" uses a fuzzy algorithm from the sentence context to match an initial template to a vocabulary. THIS IS THE BIT THAT IS BROKEN IN MY READING

If I find a word I do not understand it DOES NOT APPEAR SPELT CORRECTLY. Once the context is brought in by scanning the sentence the correct spelling magically appears. Spelling alone will not do this!! Very strange to see but true it is like watching a spell checker at work.

• Spelling can be used when there is a missing template or a badly formed template (misspelled word).

See above, mechanise not at all clear

• The juvenile mechanism and it's associated vocabulary is formed in early life (perhaps up to 12 years old) and one that age is passed new words are not added

See the twin mechanism argument above

• Reading and Writing (and speaking) use totally separate mechanisms

Easy one, I could not read properly but I could speak perfectly and write OK except where I had to read to "help"

• I believe that reading, writing and speaking are joined together through an Information Context containing Information Snippets which are not word or sentence based but based upon a categorised memory mechanism

This is on the edge, but I believe this because once I moved on a couple of sentences  (perhaps a paragraph?) I could no longer use the context to re-read the sentence (it hat been forgotten). However the information had not been lost, I remembered the information content in a different context. It had all gone into a differently structured "Memory" 

I got some confirmation of the Juvenile / Adult  mechanism theory in current research from the speech therapist who spoke to me (we had great fun talking about this stuff and she thought it might be useful for here current Masters work).

TOTALLY FASCINATING

Wish me luck for next weeks surgery.

Tumour 2

So here is the next  insatmenr of  "Ian's Tumour" But now it's Tumour 2. But more about this in a while.

Got rushed into accident at my favourite hospital on Tuesday at around 5pm. That was strange because although I was sent by Professor Neuro I had to go through "standard accident" stuff like blood sugar,  ECG   (but not EEG) and the obligatory saline drip etc. 

Went through a bunch manual tests while I was waiting for the CAT scan, which of course I was really waiting for Got the result (with picture, below) at about  8pm.

The result was unsurprising but still shocking a huge (to me it seemed) new tumour on the left hand site behind where the old one had been. I was now,  awaiting confirmation, Recurrent GBM 

I was kept in hospital and after an event in accident that Carol and I will never want to see again I got to a normal ward at lights out with no shower or wash and still with my drip that I did not need. The night was very restless, possibly my worst night in hospital. The second day, wednesday, consisted of an MRI which confirmed everything we had first seen in the CAT, and an EEG to see how manic my brane was (no too bad).

On the morning of day three I had four of Aarau's finest brain girls and guys at my bedside to put forward the options to me. At 3pm, on my request (to have a quite weekend at home) I was discharge with the report, and appoints for Monday an open ended sickness certificate  a prescription for a pile of drugs (my old friend Timonil that prevents seizures, Cortesone for getting the swelling down and 2 others to counter effect cortisone)

Welcome again to the big C emotional roller coster.

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For those of you who have not been paying attention I was diagnosed on 5th September 2007with a  Glioblastoma Multiforme  brain tumour, a primary tumour. After Radiation and Chemo treatment I was cleared of that tumour by the end of September 2009

Most beloved friends and family, of course, prefer to ignore that this is an currently incurable disease and nearly always recurs. For me it has jest recurred, the 1st recurrence and therefore Tumour 2 with clearly more exciting side effects. So after being risen from the dead, I am to die again. Unfortunately the great god of statistics shows us that  no 2 is not so easy to get rid of and puts my chances of continued survival at less than 2 years. So those are the facts (statistics).

LET THE BATTLE BEGIN!!!

and now a lot more of my (and Carol) decisions than last time. So the dream team (the famous Tumour Bord) met on Wednesday and gave me some options, so I and Carol have decided to go for all of them (best value for money)

First Line of Attack

Surgery : Some time next week I will probably go in for my second round of brain surgery, and remembering my 1st bout I am not looking forward to this again. The purpose of this exercise is to remove  as much of the tumour with as little brain as possible. Three is a 5% chance that I will not  survive this and I have already done it once (no smart ass statistics on this one from anyone its stills worse) but at least we know I have done it once.

Second and Third lines of Attack

Because the surgery will leave stuff around no matter how clean (do not want to take out too much brain)

We will probably go for what I had for the primary tumour conformal 3D Radiation therapy  concurrently with Temozolomid Chemo therapy followed by a further 6 cycles of Temozolomid 

There is another option I would like to discuss on Monday (Gliadel Wafer) before the final decision-

THE PICTURE -------------------

And for those that like picture, take a gander at this CAT span.

The big dark thing in the bottom right is the new tumour (actually on the left) the wide ring is fluid build up. I am already taking cortisone to reduce that fluid and drop the pressure on the brain (shown by the darker material in the lest brain (right of the picture). The other anomalies above the new tumour are the left over material from the old tumour not, we are pretty sure, additional tumours. Bit of a mess don't you think?

Talk to you soon I hope

p.s. if this is a bit hard to understand, imagine what it is like trying to write blindfold (actually not that bad as I have devised a way or reading with my broken mechanism see the next blog post).

Still cannot read properly

Still cannot read properly.
No worse, no better.
Headache seems to me better.
Frustration is preventing me to anything  useful

Called my doctor but he was in a consultancy (sprechstunde) awaiting for him to call.
Total frustration: can't seem to be able to do anything (reading or  otherwise)

Canceled all my work appointments as I cannot concentrate and of course it is difficult to do my kind of work without being able to read (screwed something up in the sentence sentence b.......

.....got a phone call from somebody selling newspapers and I have lost track of the track think I was talking about problems of working when you cant read... well you can't.

Strangely I can fix stuff in the sentences  I am writing but as soon I have finnish it it goes in to past mode and it becomes very hard to read. It is better to rewrite than correct after.

Write only memory..... it is like writing on a ticker-tape with invisible ink.

I really want my reading to come back very soon otherwise I might go mad.

Reading Difficulties

Sorry about the lack of blog entries
But at least I am still posting entries for the original goal.

Yesterday I was reading a magazine article and I realised that I was having a bit of  trouble reading. But I put this down to a bit of tiredness and the odd journalistic style of  Uncut.

But then this morning I picked up my pad to do my usual monday morning e-mail session and I realised that I was having problems reading my e-mail's. I tried a few e-mails because I could not believe this, but I found the same problem for each e-mail.

I could read the start of the mail but at some word I would stumble and then I would have to spell the word out in my mind and make sure I could understand what it said. Once that started to happen every few words would stump me.

These were not complex words e.g. "spent" "interesting" would cause me to stumble and once I stumbled frustration came on and then the whole thing would go gaga. Often I could get on a run and get through  whole sentences and then an unexpected word would catch me out.

Sometimes I just could not get going at the beginning of a sentence and I would have to take a run at it somehow.

Using a ruler seems to help as reducing the number of words at one time to deal reduces confusing.
By the way I do not know how the post looks because I have trouble reading the post back !!
Writing is OK, reading is awful.

I am quite scared at the moment.

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I have decided to try again in the morning (putting it down to a cold and tiredness). If there is no improvement in the morning I guess I will be talking to Professor Neuron for the first non-regular time in five years.