Busy getting cured

As usual, my blog is taking a back seat. Much of this is due to various types of therapy radio, chemo, speech (including reading) and occupational.

But first I need to congratulate Carol on her belated (21st October) Birthday, so her it goes......... Happy Birthday Carol ......... A very nice surprise around Carol's celebration was a visit from my little sister Marion and her daughter, my niece Claire. This was the first we have seen her in Switzerland for 20 years!

Radiotherapy

I started radiotherapy with concurrent chemo on 10th October. About the only difference since my radiotherapy back in 2007 was the mask had been improved to incorporate a dentat holder which improves the position accuracy and removes the nose hole for breathing. I will try and get a picture of me in the new mask if I can. See the previous blog entries for how it was 5 years ago.

Diagnosis & Treatment

The Chemo Man (Oncologist)

Concurrent Radiation and Chemo therapy

Radiation Therapy Ends

I started off on the Radiotherapy badly, I decided to try taking the Chemo before going to bed with the idea that any nausea I would have would be hidden by sleep. This was a big mistake, at around 3am in the morning I woke up and had to go straight to the bathroom to empty my stomach. This continued on an off until around lunch time. I was not sure wether or not this was caused by the regime or chemo body shock, but either way going (back) to the old trusted, morning regime, seemed to fixed the serious nausea, and I have not seen anything like that since.

I had thought that the side effecs were worse this time around; Nausea and radiotherapie burns, but looking back to the blog I can see that, as Carol had already said, that is just not true. In fact the only thing that is worse is my head sore all over due to, not only the burns on both sides, but also the scalp scars soreness. These keep me awake at nite.

Well at least there is only another week to go before The radio therapy ends and I get a few weeks reprieve from chemo.

Otha Therapies

By now I should have been doing regular Speech, Occupational and Neurological therapies, but due to a cock-up at the hospital my insurer has only just given their permission. So I have only just started speech therapy last week. The first couple of sessions were more about analysis rarther than therapy but finally I got a useful tool today. This was a simple tool that forces you to contextualize a sentence by covering up the bottom of the sentence while trying to read it. This lack of information forces you to take into the sentence context to fill out the missing information. I was sceptical at first but after a few sentences is really started to improve my reading.

Printed page to Speech

Earlier I had mentioned a dream tool for OCR to speach. In fact it turns out I can actually build up this using a couple of iPhone apps. The first is an OCR app called TextGrabber that uses the built in Camera (or existing photo), the second piece is the iPhone built-in Text to speech. I was astounded at how OCR has improved over the past few years when I last used it. The really cool feature of TextGrabber is built in language translation, so I can scan a German document and speak back in English!

Of course this solution is not perfect due to the camera weekness. If I use a scan from my scanner transfered via PhotoStream the OCR is almost perfect but a lot less convenient than the camera. That said we are talking a CHF3 ($3) iPhone app versus a CHF80 equivalent Mac app.

The Wall

No not the Pink Floyd album, a real wall. Over the last 6 weeks we have had builders / gardeners replacing a 40m (30m x 10m) retaining wall around our garden. I wanted to get a new car this year but we had to do this instead because The old one was falling down. I'd like to thank the workmen for doing such a great job (amazing eh) and our neighbours for put-ing up with this work except those neighbours who stole a big chunk of our garden.

Just about me

Very very tired,
tired of traveling to hospital,
tired of radiotherapy,
tired of the pills,
tired of trying to read,
tired that I can not read,
tired this blog takes 10 times than it used to,
tired of having to ask for help,
tired of what is till to come,
tired of not sleeping,
just simply tired of life but...….
The glimpse of life at the end of the tunnel makes it worthwile.

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.

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.

------

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.

-------

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.



 

Happy New Year

HAPPY NEW YEAR to all.

Usual apologies about not doing the blog for such a long time, no excuses.
I even managed to completely forget to talk about our trip to China in August. I guess I should put something retrospective in on that very strange visit (not so much a holiday as an educational revelation).

So what else has been going on.

Leon
Leading up to Christmas my eldest grandson, Leon, has been sick with some digestive system problems, even spending some days in hospital a couple of weeks before christmas. He has been getting nausea and stomach aches and losing weight (mainly because he does not want to eat). After any number of tests, the doctors are none the wiser than they were at the beginning. This reminds me so much of the the "Crohn's" saga with Amber back in 1997/8. We are hoping the result will not be the same. At least he was back with us over Christmas, poor little fella.

Christmas with the Gardiner-Smith's
As usual we had the typical Anglo-Swiss holiday season which allows us to start eating on the 6th of December (Niklaustag / St. Nicolas) and to start dieting on 6th January (Dreikönigstag/12th Night). And just to make sure there is no letting up on the gluttony we stick in a baking day (2nd Sunday in December) and a 2nd festive birthday for our lady Kayleigh of the prolific procreation (15th December).

Do you think the people that decided that 12th night was on 6th January could count?

With 10 at the Christmas table there was little time to get bored, no time to play with the new toys (except for the kids of all ages, yes you know who you are) and absolutely no traditional style TV blobbing that is so popular in the UK.

Pads
The favourite presents this year were Pads, or tablets, or slates (depending on whether or not you want to admit that Apple defined the market or not). My vote is with pad, Joss is a tablet guy, I reckon tablets are what you need when you are sick and slates, who would call a piece of hi-tech a "fine-grained, foliated, homogeneous metamorphic rock." But a pad, that is what you come home to, that comfortable place where you feel totally at home.....man.

I still have my vintage i-pad (and still happy with it, thank you very much), but we seem to have a new proliferation of i-pads around the house at any given time. And there is the one Sony Tablet "an Android tablet like no other", because it's like a pad maybe?

Thanks for the Presents
Thanks to everybody for this years presents - The soft face, the Port I cannot drink until the puzzle has been solved, the well charged mouse, the prospect of floating above the earth without an engine (but with a parachute) and the the upgrade to being a complete  Apple convert. Finally the Windows Notebook can be replaced by my a brand spanking new Air). Apologies to anybody I missed out.

Carol the Artist
Over the past year Carol has added painting to her hobbies. She sneaks off to our bedroom as early as she can to can to dabble the night away in the company of her watercolours and acrylics. I am one of the few, if not the only, person to have seen the results of this enterprise.  Give here another year and we'll be looking for exhibition halls.


The 9 to 5
On the work side there have been a lot of changes recently that were out of my control, including the redefinition of my role in the department I work in. I have not been very happy with the changes and have therefore been looking for something more appropriate to my skills (and with the potential for a bit more fun). It looks as though I have found something with my current employer so I will not need to go through the non trivial hassle of changing employers. (Imagine, looking for somebody who would be be prepared to hire me at 30% and handle all of the "organisational" hassle of hiring an invalid). So next year I will be probably doing a lot less trips to Paris but a few more further afield. I will miss my Parisian friends and will need to find some excuses to make the odd visit now and then. More on the new job when things are more or less settled.

Epilogue
I am sure I have missed out on a ton of things that we have been up to in the last 3 months but at the moment in my current drugged up state ( I have a cold) I cannot think of what.

I have already started working on my best of 2011 music list and hope to get this posted before the end of this week, and if I get the chance I might even look at moving the blog later in the week, because if I don't do it this week I think it may be a while.