Lots of updates

Latest MRI Sample

Shows before and after surgery. In the post pictures there is a lot of swelling still visible but this was only a day after surgery so that is no surprise. In the vertical post picture you can see a fair ammount of tumour still left so it is essential to get the radio and chemo therapies going as quiclkly as possible.

Prior to surgery - shows solid tumour

Post Surgery - most of tumour removed

Staples and Stitches Removed

On monday I went to my local doctor (gp) to get the stitches and staples removed. I was surprised at how painless the stapel removal procedure was, especially the way the the stapels just squeeze and lifted away". The only problem in this area Is the length of time the scars seem to be taking to heal, and the longer this takes, the later the radiology and Chemo treatment can start and the later this starts the longer time the tumour has to grow.

Radiology and Oncology Discussions

On last Monday and Wednesday I had discussions with my new Radiologist and my old Oncologist (same guy that looked after me 5 years ago.

Given the repeat performance of a Glioblastoma Multiforme , the tumour board had already decided to recommend standard treatment accordingly. This consists of 6 weeks of conformal 3D Radiation therapy to a total dosage of 60 Gray (maximum allowable dosage) concurrently with Temozolomid Chemo therapy followed by a further 6 cycles of Temozolomid (1 week in every 4) for the next six months.

Note that this is identical to the treatment I had for my original tumour. I can get the full dosage because, luckily the new radio beams will not cross over the old beams.

Interestingly, the lady raduiologist is English and ex NHS and used to work in Hertfordshire, where Caroll and I grew up. She had worked in the QUE2 hospital in Welwyn Garden City the hospital that our daughters were born in, and ironically the hospital in which my mother was diagnosed with her Brain Tumour! Given that and an ex NHS Neurolosurgeon also from Hertfordshire (Watford) it feels like I am back home :-)

How's the Brain?

Enough of my physical condition and up and coming treatments but how's my brain?

The best news is nothing is worse since the operation and the worst news is that nothing is much butter. I still cannot really read and I still have these peripheral visual anomalies which confuse my attenpts to relearn reading and improve writing

I have seen some improvement in finding my way arounb my machines. I believe that this is due to re-learning rarther than regaining capability although, of course, I cannot be certain. As I have previously mentioned I am much better at reading symbols and icons than words I believe thad is because they do not have to actually be read. Ironically in the past I was a words man and had a lot of contempt for Icons. Now, without them my life would be almost unliveable.

You can not imagine how hard it is to live in our modern world without the skill of reading. Withot text to speech my quality of life would de approaching zero.

Technology keeps me sane, by providing me the tools to navigate the written world.

A device that could do real time OCR (optical character recognition) to speech is on my wish list then I would be able to read the printed word as well as just the electronic word.

Horror Show

This is my second post since surgery, and is all of my own work
(last one was dictated to Amber)

In order to put this together, I needed some tools
As my reading is somewhat worsened due to some peripheral vision issues.

So to write this I make short sections and then play them back using my iPad's "text to speech" utility.

I think my reading seems to be getting better but omly symbol recognision. For example, i had lost the ability to read an analog clock but that has come back. My ability to use a keyboard seems also improved

My general health is OK although I feel rather tired.
Emotionally I am much more stable.

For your entertaimment here is the official horror show from the 9th of September.
Please forgive Carol's shaking hands, but you can agree the pictures are pretty grizzly.

The new scar and its 24 stapers

The repair job, I hope it worth it

The pair

On Monday morning I shouid get my staples (new scar) and stitches (dent repair) removed. In the afternoon I have a pre Oncology check up to see if I am fit enough to be poisoned and radiated.

By the way, writing this blog is a very slow and stressfull process and consequently the result loses much of it's personality, and I apologise for that,

Ian

It's alive! It's alive!

(Hello this is Amber writing, because my dad can't write at the moment. This will hopefully change in the near future, but in the meantime dictating to me has to suffice.) Just a short note. Entered the hospital on wednesday the 5.9.12 and was operated on on thursday. The tumor was bigger than expected, but much of it has been removed. I haven't seen a picture of it as yet, so no idea how much bigger. The first couple of days after the op were bad, death wishes etc. But today I have my will to live back...even with the strange things I have to work around such as weird visual effects (the right eye has been effected so my eyesight seems to have gotten worse), disembodied body parts and having to relearn how to use the ipad and phone. I am also now titanium man thanks to a newly aquired titanium plate. (for the swiss readers: I upgraded to halbprivat, to enjoy the two beds per room and the coffee and cake trolley). Hoping to leave on monday if all goes well and will give you an update when I get home.

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.