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.



 

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.

gardiner-smith.com, new home

The gardiner-smith.com domain  and hosting (mostly used for the our mail addresses) have been hosted by the same service for over 10 years and the services have not change one iota in that time and I was still paying the same price.

Nowadays, e-mail messages are much larger and I had been having quota problems so I decided that I would look if I could get a better deal. I first tried my existing mail/web host service (flump.net) and discovered that they were still talking about the same packages as I got 6 years ago with spaces measured in MB still!! What is more they have not updated their site in 4 years, I think maybe they have lost interest.

After a quick look around it looked like hostpapa had one of the best deals with pretty much unlimited space/bandwidth and a great set of services for €2.95/month. Compared to my 250MB limit for about twice that. They also offered a free domain for life (as long as you stay with them I guess) so I was able to transfer gardiner-smith.com from from register.com to tucows (host papa's registry) at no cost. Their pre-sales on-line support was excellent and instructions for set was clear

Planning the move was quite nerve wracking making sure that the break in service was as short as possible but I need not of worried. I was given an ip address at host papa which allowed me to set up mail accounts and stuff, then once the auth code had been requested &  received from the old registry (requiring a phone call and them pleading with me to stay for 10 minutes)  and passed on to the new registry all I had to do was wait. I backed up the old mailboxes and up a redirect on my old mailbox so I knew when that stopped redirecting the new domain address had been propagated. It all took 4 days from signing up to being transferred (with no loss as far as I know). Most of that time was just waiting for the internet to propagate my new address through the global DNS. Now a lll I need to do is shut down the old service.

Upshot is I am now running gardiner-smith with hostpapa. No homepage yet, but you can look at some photos of my new grandson and our China holiday at http://gardiner-smith.com/pictures/.

If all goes well over the next few weeks I might go back to hosting my own blog rather than using bloodspot. Mainly depends on how difficult the migration is.

p.s. The more observant may have noticed a few posts from my old 2002/2003 architecture blog just for nostalgia's sake.

Your Good Healtth

Or mine actually.

Given the origins of this blog I thought I should mention the current state of my health four years on from that fateful day 1n 1997.

1. I am still alive: This in itself is more than I could have hoped for and I seem to well into the long tail of the morbidity statistics for my condition. Sometimes it is hard to imagine that I am terminally ill.
2. Side Effects from my condition or treatments: It is difficult for me to tell which is which, and the doctors can't tell either.
   - My Brain-Speech connection still has problems and I lose words and forget names more than is normal (or was normal for me). It may be getting worse, but it is definitely a slow progression ifit is. It is the only thing that still scares me, the idea that I might at some time lose my ability to communicate.
   - I still have some insensitivity on my right side but either it has got better or I have gotten used to it, I think this was a by-product of my biopsy, but as I said nobody can prove it one way or another.
   - I still get headaches on the left side of my head in the mornings, on waking, several times a week, but they are not severe and they usually go away within 30 minutes.
3. Drugs: I only take Timonil (Carbamazepine) 300 twice a day as a precautionary measure against seizures. This to make sure that my regular EEG doesn't show too much craziness in the damage areas (see plot below) because if it did  I would be banned from driving. (Given the drugs I am more likely to get banned for other reasons, but more of that in another post perhaps).
4. Monitoring: I am now down to 2 check ups a year which comes down to alternate EEG / MRI appointments. Sometimes I feel embarassed taking up the time of the guys and gals at the hospital just so that Professor Neuro can say "No Change"

Just in case anybody is interested here is my latest EEG from yesterday:

Interesting bit is around 3:47 where the sensors (FP1-F7, F7-T3, T3-T5, T5-O1) around my damage get a little crazy,
but not crazy enough to worry Prof. Neuro thank goodness

 P.S. I have added a tag Health so you can track just the health stuff

More Ooh & Aah pictures from Jayden

Just Me

Me Again

Just me and Mum

with Mum and siblings

with Nanny (& u. Joss)

Nanny Again

With Aunty Amber