Friday, 31 August 2012

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).

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).

Tuesday, 28 August 2012

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....... 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.

Monday, 27 August 2012

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.