Decorations

Carol and the girls were together making the swiss traditional door (kranze) and table decorations for christmas today, so the dining room was covered in green stuff (ivy, bits of fir tree etc.) and shiny things. I had the job of keeping my grandson away from this mayhem.



So here is the front door "kranz", err the lion was already there

(btw, My tooth is still in pain, but I think it is in the gum now).

Another Get Together

Had another get together of old colleagues last night, but this time I didn't have to give my news because the guy who invited (an ex-boss who has become one of my greatest friends) e-mailed my blog address to all the guys and gals beforehand. So we just skipped all that stuff (well most of it) and got on with the fun. Great friends, Great Food (and a little Great Wine, but don't tell the doctors), Great Evening.

Punishment; I woke up with toothache under a tooth that has already had the root removed!

Delivering the News

I was at a get together of old colleagues last night (we all used to or still work for the same large Insurer), we met up for a drinks and dinner.

Needless to say not all of the guys knew of my new condition and as usual I never know how to deal with an announcement, which is neccesary if for no other reason that I happen to have a bloody great scar that I didn't used to have. I chose to deal with it as the matter arose generating some serious shocks with a couple of the guys (sorry). Dealing with this never seems to get any easier.

Anyway it was a fun evening despite my standard party pooper.

Quiet Weekend

Had a quiet weekend reading Bill Bryson's "The Life and Times of the Thunderbolt Kid", its about his growing up in Iowa during the 1950's. Very funny and insightful.

Carol has had a really nasty chest cold for the last few days, but she still refuses to just sit down. I'm dreading catching it too, because I know how the last cold knocked me out.

Side Effects

I have actually suffered no major side effects from any of the treatments I have been given so far.

Should I be pleased or worried?
Can a lack of reaction also indicate a lack of action?

I hate waiting at least another 6 weeks for the next MRI, although I know that at this point my brain might look like mush due to the radiation treatment I feel arrogant enough to think I'd see through that.

Chemo Man Frustration

Went for a check-up meeting with Chemo man today, and told him all my little woes.

Seizures
Over the past few weeks the character of my seizures have been changing. I used to have more and they would last just a couple of minutes with this kind of electrical pulse starting in my right foot then moving out to my right arm and right side of my face face and then would end with an increase in intensity just before switching off completely like a switch (which I put down to the anti-seizure drugs cutting in).

Now it is now difficult to call them seizures (although I guess they must be) because the electric feeling is milder and steady and just wanders around around the old locations for sometimes 20 minutes and then just kind of fades out.

I asked Chemo man if this might be something to do with the change in medication dose (Timonil), and he said maybe or maybe changes in the brain due to Radiation or Chemo or both (or who knows).

Nausea
I said that the Nausea pills I'd been given didn't work, so he gave me a whole list of other drugs that we might try. I declined them all as at the moment it's quite mild.

Sore Throat
I said I have had a recurring but mild sore throat since the time of my biopsy and asked if that was anything to worry about. He said it could be the Timonil (as its the only thing I've been taking that long).

Numbness
I said I'm getting numbness in my hands and feet at various times of the day and he just noted it down and said nothing.

---------
I already knew that much of the stuff around brain tumours (particularly my kind) is educated guess work, but its still very frustrating to see a highly trained professional seem so powerless. Shouldn't he at least looked at my throat in case it was not the Timonil? Should he have checked blood pressure or something for circulation problems because of the numbness?

What is the point of a check-up, if no action against symptoms, however mild, are investigated.

Oh well, at least I have a bit of a rest from treatment (apart from anti-seizure) until the first Chemo cycle starts on 7th December.

Back to Work (a bit)

Spent a few hours at work this week and started to get involved in a few things again. Want to take it easy at first, probably just 20% and see how that goes. It suprising how quickly I become tired, I hope this isn't the normal situation from now on.

Lights & Music

Put the Christmas lights up on the balcony today, it took me best part of 3 hours, I hope its worth it.

New addition to the playlist: Amy MacDonald - This is the life
I was suprised to hear something like "Poisin Prince" (a negative dedication to Pete Doherty) on the local (program) radio station - Energy Zürich who normaly stick to the hits. Anyway it got me looking at the website for Singer-Songwriter behind it (http://www.amymacdonald.co.uk/). She reminds me a little of Kirsty MacColl Folk Rolk, and even has a kind of 70's feel about it. The songs feel like they were written by someone much older than her 19 years. Favourite tracks are Run, Poison Prince, A wish for something better and Footballer's Wife a mildly veiled dig at Mrs. Beckham I think.

Pre-Christmas Cleaning

I'm feeling great just two days after my first bout of treatment has finished. The afternoon tiredness that was knocking me out in the afternoons seems to have gone already .

Carol decided to start the giant pre-christmas cleanup today. I got the job of dusting the ceilings. Sound easy enough, except that our ceilings are mostly under the eaves, with high points at over 5.5m That means perching up on tall ladders with feather duster in hand. As you can guess this is work for more than one day. The good thing is that Carol was happy to let me do it, now that wouldn't have been true a week ago.

Radiation Therapy Ends

Today was the last day of the combined Radiation / Chemo stage of my therapy. It'll be 3 weeks before I start with the first "Chemo only" cyle of 7 days. That means no more daily trips to the hospital, and (I hope) less of feeling so tired most days of the week.

Here are a couple of pictures taken today in the therapy room (thanks to the staff of Kantonspital Aarau and photographer Carol).

The first photo shows the accelerator machinery behind me on the super manoeverable table before being masked.

The second photo shows me being clamped down into my mask (great nose eh). The target you can see is one of two used to align the machinery via laser pointers on the ceiling.

The final shot below shows the burning sustained at one of the beam entry points (top left), and the way my hair follicles have been knocked out (it's not bad shaving), this should grow back eventually.

Snow

It's days like today that make me really happy to live on a hillside (not hard in Switzerland). I just got back from my last but one radiation therapy and in the valley (Limmattal, 380m) it was miserable rain with a sleet quality, but as we climbed (on the bus) up towards our home just 200m higher (576m) the rain turned from sleet to real snow putting us in the first real Snow of the Winter and our own little Winter wonderland, better locate the snow shovel.

I missed out a couple of things off my playlist from yesterday:

Within Temptation - Heart of Everything
I could call them a cross between Evanescence (female vocal goth-rock) & Therion (Wagnerian operatics) but that would be unfair as they have been around for 10 years and are apparently Holland's leading musical export. So if you want an alternative to Amy Lee's powerful but limited voice you could do worse.

John Fogerty - Revival
John fogerty was the driving force behind Creedence Clearwater Revival, and after 30 years he seems to have finally come to terms with that. This is Creedence for the 2000's, pure Americana

Playlist

Looks like the Exercise problems have been fixed by the new Timonil dosage. I'm able to go up to 140bpm for around 30 minutes without bringing on seizures : Hurrah!

I have been neglecting new music a bit since this thing struck (I really need a pet name for this thing: any suggestions?) . Not to say that I have stopped listening, that will not happen until the music of the spheres stop (and I don't mean the Argent song).

I seem to be in a a mellow mood at the moment, when not on random, this is what I have dug up to listen to:

Calexico - Garden Ruin
The most song oriented album from eclectic band influenced by everything Mexican border (Robert Rodriguez probably likes them).

Coco Rosie - The Adventuress of Ghosthorse & Stillborn
Dance, Hip-hop, Rap, Schoolgirl Operatic rock. But better than that sounds.
Japan & Werewolf are a couple of my favourites.

Pink Floyd - Piper at the Gates of Dawn
Been listening to the old vinyl, after finding the new cut didn't cut it

Rufus Wainwright - Release the Stars
I know this guy is one of the most original songwriters around at the moment and mixed with the big production jobs he uses I know I'm going to like him in the end.

Amy Winehouse - Back to Black
No comment required

PJ Harvey - White Chalk
This lady has been making quality albums forever, this is her latest mellow number. If you like PJ you'll like this.

Raising Sand - Robert Plant & Alison Krause
A match made in heaven. Country-Rock-Blues-Bluegrass-Folk. Robert Plant finally finding music that is still challenging but doesn't crack up the old man's voice. While Ms Krause brings her beautiful Bluegrass Folk voice to the party, and the band is just classic. All are favourites so far.

Sigur Ros - Heim / Hvarf
Latest from Iceland's arena rockers. Nobody can use dynamic range shocks like these guys, a breath of fresh air in this world of compressed production. I should have got bored with their formula after playing () and Takk for a couple of years, but no no no...

Amiina - Kurr
Fellow Icelanders (or rather Icelanderins, to corrupt a German form to describe the female form of an Icelandic band). These ladies are as different as you can get, but they somehow retain the feel of Iceland. I don't know what they put in the water up there but they sure produce some original and great music.

Roisin Murphy - Overpowered
Pure modern disco from the ex-Moloko leading lady

Gorecki - Symphony No. 3
The Second movement is one of the world's most beautiful pieces of music, and it's still rarely heard. But listen to the whole thing to get the full effect.

Joanna Newsome - The Milk Eyed Mender
Twenty something Folk Harpist with surreal lyrics and a voice that sounds like a 12 year old - Captivating. Try any track, you will either love her or hate her.

White Stripes - Icky Thump
Brilliant - Who needs a Led Zeppelin reunion when you have the White Stripes taking over where they left off 30 years ago. Don't believe me? just listen.

Christmas Bazaar

Another busy weekend. On saturday Carol, Kayleigh and I went to the annual English Christmas Bazaar in Zürich organised by St. Andrews church. This is where all us expats get their odd English things for the festive season (Christmas Crackers, Sweet Mincemeat, Christmas Puddings, Rich Fruit Cakes...). But more importantly, to Carol at least, is they have a huge second hand english book sale where you can pick up a carrier bag full of books for CHF40 (the cost of 2 new books) and get rid of some of your old ones.

I guess you might find me celebrating Christmas a bit hypocritical following my previous posts, but the way we celebrate Christmas has more to do with family get togethers and Peace & Goodwill to all men than the birth of the founder of Christianity.

On Sunday Carol & I joined a couple of friends for a great Brunch in Zürich. Hope the parking fine doesn't bankrupt you R.

Eerie

I'll forgive you if you don't believe this, but I had Winamp (music player) playing on Random while I was composing Losing my Religion, I have over 14000 songs in my library and the next song that played after I pushed the publish button was REM's Losing my religion.

Question is: How do I interpret this revelation?
Comments welcome....

Losing my Religion?

I haven't been as plain with you folks as I should have been. about a month ago I mentioned an e-mail from a christian friend of mine (spiritual can of worms) and my problems with an answer. Well I actually answered him not long after that entry but haven't mentioned it before now as I haven't got my head around what I wanted to say here in the blog.

As I said back then, I am a religious apathist in that I have failed to study Religion enough over my life to have gained the insight needed to choose a faith I can put my trust in, but recently I have put a bit more thought into the subject.

I was born into an Anglican family and raised in the Christian faith as taught by the Anglican Church. My family was not very religious, but personally I became strongly religious at an early age, even at one time wanting to become a priest. I spent many of my younger years involved in devotional music, singing praises and devotions to a god I didn’t know or understand. I was a good singer with one of those beautiful pure voices young boys have. I was a devout Christian by the age of 10, the age at which I was confirmed, I don’t remember having to practice the catechism much.

I have blanked the loss of faith from my memory although I suspect it may have had something to do with my mother being taken away from me at the age of 11 by a brain tumour! The church told me this was god’s will, and no god helped me to understand why this should be his will. By the age of 13 I had a religious clean slate and no motivation to refill the slate., and that is how it has remained.

I picked up the (New English) Bible again as my friend suggested, and have read much of both the old and new testaments by now. Sorry to say I have found no comfort in its pages, I found only unbelievable and irrelevant testaments from men of dubious moral fabric (in the old testament), and little more than a few stories of Jesus Christ's ability to perform miracles (in the new). Jesus, at least, attempted to teach a policy of Love one another, but still under the threat of a jealous and somewhat nasty God. I find it difficult to believe that the world's largest faith system is based on such flimsy evidence of an all powerful God. Why should we find faith in the god that has shown nothing of significance, either directly to us all or revealed to the "blessed", for the last 2000 years.

Perhaps I'm oversimplifying but I see two sides to the value of religious teachings; one is the putting down of a basic set of moral values (the fundamental laws of a society) and the other is to help us understand our place in, and our spiritual connections to the universe from before birth to beyond death.

On moral values it seems that (most of) mankind has a built in Empathy to other living creatures that allows us to build a small set of laws without divine intervention (unless of course you see empathy as divine). Many religions (and countries) unfortunately use a fear principal to impose these simple laws.

A much tougher role of religion is to help us in understanding our place in the universe. Tough because it requires us to understand things that are clearly impossible to fully understand. There are two ways of dealing with this, either we have faith in what somebody else has had revealed to them (Check out the revelation of John if you want nightmares with no apparent value), or we have faith in our own observations of the Universe. We are lucky to live in these enlightened times where we sometimes get a glimpse, through Science, of things that are starting to reveal other planes of "existence". Just imagine, for instance, places without time as calculated by Mr. Einstein and his followers. It is such phenomena, and just the pure fact of the universe's existence that provide hints at a greater god. I think it is our purpose to get as close to that god as possible by striving to understand our universe. Do we get to become part of that understanding when we die? Who knows.

So where does that leave me:
I feel some alignment to the teachings of Buddhism where there is no specific concept of God but where the teachings are spiritual in nature, and I feel very close to Deism and the two core features of Deism: The rejection of revealed religion and the belief that reason, not faith, leads us to certain basic religious truths.

A quote from Thomas Paine (the father of Deism) sums up my current feelings on death:

"I consider myself in the hands of my Creator, and that he will dispose of me after this life consistently with His justice and goodness. I leave all these matters to Him, as my Creator and friend, and I hold it to be presumption in man to make an article of faith as to what the Creator will do with us hereafter."

And before that I will strive to understand a small bit of the universe concerning cancers, by fighting this thing until the end.

Sicko

Out with friends (one over from England) last night for food and a movie.

We went to see Michael Moore's Sicko, another one of his Docutainment movies this time on the US Health Industry and how it fails to serve the Insured, let alone the uninsured. As usual you have to be careful not to be dragged in by the overdramatised methods he uses, but as usual you come away thinking it's better to live in a country where big business is not the only driver behind such an important public service, and where democracy without fear is one of the most important drivers to a healthy society (physically and mentally).

Busy Sunday brings on the Seizures

All the crew around our place today, for the fortnightly get together. Spent a couple of hours playing Singstar this afternoon, fun for parties of any size and singing ability not as important as one might think. Suffice to say, scores will not be revealed here

Downside, got the first two little seizures since upping the anti-seizure dose, but I guess it was a fairly stressful day. All the same a bit of a disappointment. I'm convinced I'm taking longer to recover from them now even though the actual symptoms are very mild.

Morbid Day

We had what Carol calls a morbid day.
That is, thinking about stuff we should do so that we are ready for the worst.
Sometimes I think it's a bit unfair knowing you have a severely shortened life span, and thus feeling an obligation to sort stuff out for your own demise! But then you remember this is about making things just a little bit easier on the loved ones that have to survive you.

You would be amazed at some of the wierdest stuff you end up putting on the todo list. There is all the usual like pensions and life insurance and wills (I keep joking I've got nothing to give away that wouldn't need upgrading in a year), but then there is looking into things like can I get my no claims bonus transferred to Carol seeing as she has been driving as long on my insurance as I have.

The trick with morbid days is to try and disconnect the actions from the emotions. I seem to be able to do this better than Carol, is this a man / woman thing do you reckon?

Out of It

Sorry for being missing for over a week. The main reason was a bout of Gastric flu. The whole family has had it in various forms (some coming out of one end, and some the other) lasting a couple of days but not being too bad.. except for my case, I now know what it means to have your immune system messed with by Chemo.

The symptoms were no worse than anybody else on the surface but I basically slept for three days only dragging (or rather being dragged) to my radiation therapy to break up my sleep. I was like the proverbial Zombie. Today I awoke feeling almost normal, despite the continuing squits.

Anyway to other events of the week:

NOVO-TTF
On Tuesday I dropped an e-mail to the Dr. in charge of the Novo TTF trial centre at the University Hospital in Zurich. This is a new tumour treatment that has been showing a lot of promise in early trials by destroying tumours as the cells divide turning them into useless bits of sub-cellular matter. The Novo-TTF device does this by using low energy electric field at specific frequencies and thus interfering with the division process. I'm not currently eligible for the trial because it is for recurrent or progressive GBM's and mine is still going through its first attempt at killing me. But I thought I'd show my interest anyway. I was very surprised to get an appointment with the lady in February to talk about my interest. I know I shouldn't be tempting providence like this but this one sounds cool.

Bought tickets for my son and I to go see "We will rock you" on Thursday... I never made it but my son in law enjoyed it on my behalf.

Professor Neuro
A visit to Professor Neuro on Wednesday (the neurologist who is responsible for my well being) where I got an EEG to see how my brain waves were acting up. After 20 minutes of opening and closing my eyes, bright flashing lights and ringing bells I was returned to Prof Neuro who showed me some abnormality on the left side of my brain, commensurate with the outstanding potential (no pun intended) for minor seizures. He said that the current small seizures were not likely to cause any damage. We then discussed upping my anti-seizure medication (mainly so that I can do some exercise) and after a quick call to chemo man (who has all the ins and outs of my blood state) he agreed to up my Timonil (carbanmazepine) from 900mg to 1200mg per day. So let's see how this goes.

Funny each time I talk to somebody with Neuro in their name my chances of sitting behind the wheel of my X3 or riding my precious F650GS ever again seem to become just that little bit more out of reach