Christmas Eve Preparations

The tree is decorated and the presents underneath
The smell of Sausage rolls and mince pies cooking wafts in from the kitchen
Lights, candles and decorations in reds and golds litter the house like a set from a fairytale
The houses around us and many of our friends start their Christmas celebrations Swiss style*
We will soon sit down for a Chistmas Eve dinner of Boiled Ham and pastries
At aroud Midnight my Daughter, Son-in-Law and Grandchildren complete the picture
And the preparation for the big day will be complete

I give thanks that I am here to celebrate this Christmas season with all of my family

*The Swiss open their gifts on the 24th while the English wait untill the 25th

Fresh Christmas tree anyone?

Went into a tree plantation to choose our Christmas tree this afternoon. There is something very satisfying in clambering around the forest to find your perfect tree while it is still in the ground, cutting it down, and then dragging it out of the forest to the cashier (still have to pay for it I'm afraid). Even the grazes and mud add to the experience.

Happy Homecoming

I am happy to say that Amber came home from hospital today and should be with us over Christmas all going well. We were worried for a couple of days as it looked as though she might have contracted Crohn’s disease which is a rather nasty incurable disease, but it turns out she probably has a most curable colitis which should be got rid of with some fairly safe drugs over the next few weeks. Lovely to have you home Amber, especially with some colour in your cheeks.

Amber in Hospital

My daughter Amber has been taken into hospital today following several weeks of progressive weaknening illness. she was treated for dehydration and Potassium deficiency which improved her condition. But the doctors don't know what the cause is yet, so she is being kept in for a day or two for tests (ultrasound of the digestive system, coloscopy more blood).

Don't feel like talking about much else today.
A big get well hug to you Amber.

Happy Birthday Kayleigh

Yesterday was Kayleigh's birthday and we celebrated with lots of food first with Brunch (we do love brunches around here, I guess its just a good reason for staying in bed late) at Kayleigh's in-laws which lasted long enough to just give us time to get home and changed and then off to a Mexican restaurant in Zurich. After all that food the only thing to do was sit and watch a movie for a couple of hours (The Golden Compass, well worth a watch).

Only downer on the day was that Amber was too sick to be with us. Please get well soon Amber.

Chemo Over

The first cycle of Chemo has been over for two days now and the possible after effects have not emerged apart from the need to have a short nap in the afternoon to fend off some tiredness.

Although I feel good, that does not mean I feel perfect. I still suffer the very occasional seizures and I seem to grind my teeth for some reason. My right side always feels a bit "funny" and it's sensitivity is still up and down. I get occasional feelings of anxiety and my left eye sticks together in the mornings. Small headaches on the left side are still common.

With the falling temperatures outside I also have to make sure I wear a good hat otherwise the plate in my head gets cold and causes sharp headaches!

What is amazing is how quickly you get used to these minor health problems as being a part of your normal life. I guess that adaptability, that we all have, is something I should be thankful for, as it allows me to live a pretty normal life at the moment.

I just had a thought, when people ask me how I feel and I say I feel good what I actually mean is that mentally I'm able to handle what has been thrown at me and to still enjoy a full life, but I guess that is what all of us mean really.

My daughter Amber, on the other hand, does not feel good and has been getting progressively more sick for several weeks now and nobody can figure out why. Doctors say its bacterial so have given her Antibiotics but she continues to get worse and is now too weak to eat properly. I'm now getting seriously worried for her.

Old Colleague

Had a business and pleasure lunch today with an old colleague of mine. It was great fun talking about my favourite subject (Enterprise Architecture) for hours.

It was also fun to have another religious discussion with a serious Christian. It seems to be common interest amongst very intelligent architects and strategists, maybe I really need to take this seriously. So I have another book to read, but this one is at least is smaller than the Bible :-)

Keeping up with the Meyers

It is highly advisable when entering our Cul-de-sac at this time of the year to don one's shades for fear of permanent retinal damage. I do believe that the local power distribution centre pay special attention in case just one more magnificent pulsing reindeer or giant Father Christmas comes on line. At least in true Swiss style any flashing is very subtle, and only white lights are deemed to be acceptable. But the closer to the big day the Lumen's increase, and I'm convinced that the ambient temperature along our small lane will rise at least a degree, our own direct contribution to Global Warming.

At number 28 however we refuse to participate in this escalation and have limited ourselves to one (admittedly quite impressive) waterfall of lights on the valley side balcony with a couple of accompanying stars. Oh, and there is the recently added garland around the patio, but that's it.........perhaps after I've filled that bare patch on the other side of the patio, but then that is definitely it!

The ultimately subtle number 28

Chemo in 3rd day

Three days into the 1st (post Radiation/Chemo) Chemo cycle and I'm feeling fine.

Apart from the annoying pill regime in the mornings I'm noticing no significant side effects. I was at least expecting some nausea (as on previous occasions) but nada, so it looks like the Zofran Zydis (Ondansetron) pills work better than the Paspertin (Metoclopramide) even if they taste like pure Aspartame when they dissolve on your tongue (yuck).

Add to that only one little seizure last week, and everything seems to be going well.

Dance Event

Went to a friend's Dance School event yesterday evening. One of our friends has been tap dancing for some years and it was the big end of year show for her school. Can't think of a better way to spend a couple of hours than watching a load of good looking (mostly) women prancing around a stage, and the dancind was good too.

Indian food rounded off the evening to perfection.

Chemo Prep - So Soon

Had an appointment with Proffesor Neuro and Chemo Man today (my real life comic books heroes). This was to make sure that I'm fit enough to start the 1st cycle of chemo treatment tomorrow.

For those that have forgotten (pay attention now): I will be on 6 monthly cycles with the first cycle consisting of five days of Temodal (temozolomide) at 300mg dosage and 23 days rest. The second and subsequent cycles will consist of five days of Temodal at 400mg dosage followed by 23 days rest.

Apparently I am fit enough for my next dose of Toxins so I start with the tablets tomorrow morning an hour before food and half an hour after my anti-nausea pills (Zofran Zydis from planet puke). Oh well, just the next steps towards becoming Captain Toxic (I hope the resulting super powers are worth it)!

I have been taking enough pills recently to rattle, but there are none that upset me more than these. You wouldn't believe how hard they are to swallow, metaphorically and otherwise. The thought of what they are doing to me is in itself sickening. This is made even more difficult when I know how little our medical friends know about their effectiveness, and I know that all we are trying to do is kill the symptoms of an incurable disease.

But hey, if there is a chance the stuff can buy me another year or two, being poisoned is a small price to pay, isn't it?

Things to do before you die

Bought a couple of books on things you should do before you die. I don't mean visit the Taj Mahal and join the mile high club although I should probably think of those too, I mean stuff like deciding how and where you want to die (yeah I know, you don't really get a choice), writing wills to avoid arguments, What are the (Swiss) laws on inheritance. How to donate organs and all those other morbid subjects.

Now all I need to do is read them and act on them........Maybe next week.

A bit of Relief

Got over the toothache on Sunday. I don't know what the cause was.
Carol's chestiness still hasn't recovered, I wish she would go to the doctor.
So we just sat around the house over the weekend (mainly reading, The Algebraist by Iain M Banks on my part) with occasional visits from various family members including the Kayleigh clan on Sunday.

Monday was the first day since August that I'd actually attended a full day of work in the local office, although I'd done odd bits of work before, they had been in the home office or one to one meetings. So, I was still worried that I wouldn't be able to "perform" in public (in this case an account planning meeting including an evening meal). I shouldn't have worried, I really enjoyed the day and found myself falling back into my old ways with no limitations to my thought processes (which is what my job is all about), and I didn't get tired one bit.

As usual there were a few people wanting to know how I was but now I have got back to how we humans usually answer that question "I'm Fine", and if they wanted to know more I brought up this blog (where they can find out anything they want to know). I hardly thought of my cancer all day, and that was the best bit.

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

Nausea

Some nausea today, tried the Paspertin (metoclopramide) again....No effect, bummer.

More Seizureless Exercise

I didn't do my planned rowing yesterday because I was feeling rough, but this afternoon I did a straight 30 minutes at around 135bpm with no problems. I think I'll keep it at this rate until I talk to the Nuerologist next Wednesday.

Feeling Rough

Feeling a bit rough today. A touch of nausea this morning, so I took a Paspertin which didn't seem to help much. Once home from Radiation therapy I just sat on the sofa an drifted in and out of sleep.

Perhaps I shouldn't stay up to 2am in future.

Exercise without seizure

Since changing the Timonil regime on 20th I have had no seizures! Before I was having at least one at least every second day for 4 weeks.

So I thought I'd push it a bit and get on the exercise bike at around 18:00 (before taking the evening's dose). Did 32 minutes averaging at 132bpm (which would have previously guaranteed a seizure) with no problems. I'll try a set of intervals on the rower tomorrow and keep my fingers crossed.

Wild and Ratatouille

Went to see the new Pixar movie Ratatouille yesterday with a couple of old friends. If you've liked previous Pixar movies, you'll like this one. If you like looking at how technology in animation is getting better and better, just watch the water and fur in this one. Awesome.

It's Wild (pronounced vild = game) season in Switzerland at the moment so we preceded the movie with some Rehpfeffer (peppered venison) cooked in the traditional Swiss way served with Spätzli, Brussel sprouts and Caramelised chestnuts Mmmm. I even allowed myself a glass of Primitivo to celebrate (something).

A lovely evening all in all.

Working Lunch

On the way back from today's therapy, I stopped off for a nice lunch in Mellingen (close to the office) with a colleague and after boring him with all the gory details of my last couple of months I caught up on all the latest gossip at the office all the organisational changes, whose gone, whose new......

A bit of a reminder that life goes on with or without you.

Decided the hair would look better if shaved really short, so Carol got out the shears. I think I was right, but have still got a bare patch on the bit of my head that wasn't already bald. that Carol reckons its the shape of Italy, but why would the Radiation guy be using Italian shaped beams. I wonder if you can get designer shapes done?

Caught out on afterlife

In yesterday's blog I mentioned in passing (during the hair saga) that Carol and I had been discussing what might come after death. Well somebody spotted that I hadn't mentioned the discussion anywhere else. Sorry about that, I still haven't quite got the hang of getting all the important stuff in a blog yet.

Well, Carol and I disagree; Carol reckons nothing follows death, but I (want to) believe in an afterlife as part of a common consciousness (maybe that is as a part of god). I don’t fear oblivion, but I believe there is more to the universe than the physical, and there is some (not much) evidence to support this.

This is probably the only question that we will all know the answer to one day but will never be able to tell anybody about it. I can't help thinking this will be a recurring theme of this blog.

Hair Loss

Eek, I'm losing hair around the radiation entry points, big clumps of it.

Kayleigh spotted it while we were out at a chinese restaurant in Baden celebrating Carol's birthday. Carol then mentioned she had already spotted it earlier (a bit of Mother-Daugter oneupmanship :-). but had decided not to mention it becase we were discusssing what comes after death (nothing, afterlife, reincarnation etc) at the time and thought I might get upset! Anyway I reached up to my head and gave a pull and found myself with a handfull of hair, not exactly conducent to a succesful dinner, so I hid it away as carefully as possible for later disposal. But then, of course, the urge to do little pulls during the evening were irresistable. Hope nobody noticed.

I was warned this would probably happen, so I'm not worried, but it does mean getting Carol to do some creative hairstyling. Luckily I'm nearly bald already, so maybe I should give in and go topless.

Happy Birthday Carol

Happy birthday Carol, our girls have arranged something for this evening should be fun.

p.s. Yesterday's Rugby final win by SA against England deserves no more than a ps, awful game. Only bit of decent play was Mark Cueto's beautifully set up try (that was wrightly or wrongly disallowed). Too much kicking and not enough running. Our SA friends agreed.

World Cup Final - Rugby

I decided to change the order of my Timonil (Carbamazepine) Retard intake to try and reduce the focal seizures moving from 1/0/2 to 2/0/1 because I reckoned that it made more sense for a retard to be working most during the day and not overnight (I know I should of checked with the Nuerologist first, but....). Ive also stopped taking it together with the Chemo in the morning in order to have it with food an hour later (as suggested on the insert). Had one small seizure (Ian grade L1 at 13:30, but early days yet)

Got a bunch of people coming over this evening to witness the slaughter of South Africa by England in the real World cup final....Rugby. We have South Africans and English in the house so we probably use the Swiss as referees in the living room. In fact my son-in-law played for the Swiss national Rugby team, and I played a little at university (obligatory at Salford) so there is plenty of Rugby in the family.

Book: A Year To Live

Just started reading a book called a"A Year To Live" by Stephen Levine which is based on an experiment where he tried to live a year of his life as though it was his last.

This might seem a bit of a wierd concept except when you realise that this guy has spent over twenty years working with terminally ill patients helping them to come to terms with their parting.

I'll keep you posted.

A chat with the Boss

I'm employed as an Enterprise & Solutions Architect for a major software provider working with both customers and internal development for providing solutions in the the Financial Services industry.


Before C day (or maybe is should be S for seizure of T for tumour) I had a job which involved long hours (sometimes all hours), and a lot of world travel working with customers and our US head office. Given my disease and its likely progression it is unlikely that I will be able to undertake my duties fully ever again, Having given this some thought, I have decided that I might go crazy if I didn't some professional interest going forward (note the drop into office speak, I'll be talking about paradigm shifts soon) even though I'm now mostly shifted to a new leading paradigm (told you).

Anyway I thought it was about time to talk to my boss and sound him out on whether he thought I could still add value even if my employment dropped to say 20% and was a lot less open to long travel stretches, and that it could at any moment stop. He said he would be happy to accomodate almost anything as long as I am happy and didn't feel over stressed and that my doctors were OK with it.

So now I just need to talk to HR on how that might effect Insurance (which keeps the salary coming for now) and any pension stuff (which keeps something coming for my family later).

A Friend in Hospital

Had my blood platelets count checked this morning before being issued with my Temodar forthe next two weeks. Apparently I still have a few platelets. Had a chat with the Oncologist whose seems to be very happy with my lack of side effects so far (so am I).

Went to visit a friend in hospital this afternoon who has just had a chunk of his Colon removed due to some ruptures which were preventing waste from being transported properly and trapping some of it (I think the condition is diverticulitis). He seems to be recovering well, but has gone through a few nights of hell. Get well soon mate.

Virtual Trial

Joined the Musella Foundation Virtual Trial today.

Quote from the Web Site:
"The Brain Tumor Virtual TrialTM is a new concept in collecting and analyzing outcomes data for brain tumor patients. We collect information from brain tumor patients - or their friends / family, over the Internet. Participants are not told what treatments to do - we just record and analyze the outcomes of the treatments you and your doctors decide to try. The idea is to enable us to quickly identify which treatments or combinations of treatments look the most promising. We will then perform a traditional multi-center study on the best combinations of treatments."

If you are a Brain Tumour victim I suggest you join too, the more information we get about the effectiveness treatments the better

A spiritual can of worms

A very good friend and one of the most intelligent people I know, who also happens to be a very devout christian sent me an e-mail today. When we spoke last at one of our Sunday Brunches, I mentioned if he or his lovely wife come across any tips, tricks or treatments that might be worth looking into that they should let me know.

So here he was offering me a tip that suggested that I might start talking to god and reading the bible as a way to relieve suffering and even possibly towards healing. Of course I wasn't suprised by this tip, it was only to be expected that a true christian friend would feel it their duty to try and help me with christian ideas, and I thank him for being a true friend. His suggestion, however, opened a spiritual can of worms that had already been pushing at the lid.

I am not an atheist and I have always called myself an agnostic but that is not exactly true except that I have not experienced anything that allows me to believe in the existence of a god (the usual sitting on the fence style arrogance that you would expect from an agnostic) .

But if I am really honest with myself I would be better described as Religious Apathist.

That is I rejected the church (Anglican) and the asscociated religion (Christianity) I was brought up with in a very early blank period of my life but then made no real attempt to look at what I really believed in for the next 37 years. I'm sure this isn't an uncommon state for many people modern western society, even more common is those that claim a religious belief without actually understanding it or practising it.

It is not uncommon for people faced with the prospect of an early death to turn back to their default religions by way of insurance and a longing to believe in something. I can understand this attraction for finding spiritual peace.

But what does someone do when he has cast off one set of beliefs, and hasn't really got time to learn another (or even relearn the old)?

At the moment I am not ready to return my friend's e-mail, but I will pick up the Bible again and read John as he suggested.

Blog Started

I started writing this blog today so all the entries dated before today were written in retrospect starting on the day I had my 1st seizure. From today I'll try and write the entries properly.

Why?
I'm writing this blog so that family (all of whom live in England apart from my immediate family) and friends can catch up with how I'm doing (pretty well at the moment by the way), and also as a kind of therapy for myself that reflects my state of mind and body as my cancer progresses and I (along with my friends, family and the medical profession) try to fight it back.

Also as I mentioned in a previous entry, so many of the cancer blogs I have read concentrate on the disease and its treatment and forget to mention the the rest of life that goes on around and with the victim (its too early to say sufferer, and I hope it stays that way). I'm hoping to cover it all, if I'm brave enough.

My dearest wife Carol has agreed to continue this blog if/when I am no longer able to continue it for myself.

Brain in a Bottle

A chunky package arrived today containing all the reports so far and a CD with all my scans on as promised by the Neurosurgeon. Even though all the doctors have been very open, it is quite suprising how ploughing through this stuff gave me a much greater insight into what has been going on.

Some of the most interesting pieces of info came from pathology report that followed the biopsy.
For instance I had already been told that 4 samples had been taken, but what I didn't know was how much they took. Each sample was a 1.2cm long 0.3cm wide!

Nausea

Got a case of moderately bad Nausea today, so I tried the Papertin....It appeared to do nothing, so I just had to suffer.

Questions for the Surgeon

Today was the check-up meeting with the surgeon that did my Biopsy, he went over the diagnosis again. Just to make sure I understood everything that was happening, and then asked if I had any questions.

I had a list:

I wanted to know how my progress would be checked, and he said the next check would be an MRI scan about Six weeks following the completion of the radiation therapy unless anything happened earlier to cause concern. I was quite surprised that it was so long. but he explained that checking up earlier would be unlikely to show the effects of the treatment and does in some cases show a worsening if too early.

I said that my seizures were mostly under control but I could not exercise without bringing on a focal seizure. He asked if I had had spoken with the neurologist (a Professor no less) who was responsible for the overall coordination of my case. I said I didn't even know that there was an overall coordinator let alone who that was, he was most embarrassed as this guy should already have been in contact with me. He promised to contact him immediately.

I asked if he recommended any dietary supplements and he said there is no strong evidence that any might help, and advised against any major changes in diet that might upset the treatment.

I wanted to know if its likely I'll be able to drive again. Yes, as long as seizures are under control and I get a clear EEG.

He agreed to get a full set of the hospital reports and scans on CD to me (I needed pathology and MRI reports to join the Virtual Trial)

Carol asked the 64 Million Dollar Question; what is likely to happen to me over time?

He explained that Brain tumours do not replace brain cells so all the effects are caused by the continually growing tumour placing pressure on the brain. The most severely effected areas will be those close to the tumour. In my case the most likely early functions affected would be:
Ability to discriminate between sensory stimuli on the RHS (already have a heat sensitivity problem). Ability to locate and recognize parts of the right side of the body, ability to write. Death is likely to occur due to excess pressure on one of the essential functions in the Brain Stem.

So there you have it.

Concurrent Radiation and Chemo therapy starts

I started my concurrent Radiation and Chemo therapy today.

First to the Oncology and Haematology unit to pick up my Chemo and schluck the pills down (150mg Temodil; Temozolomide). I was also given some pills (Paspertin; Metoclopramide) that should help with any Nausea I might suffer. Then over to the Radiation unit.

The Radiation Therapy is quite literally painless.

First I was shown the control room (as it was my first day) which has a PC which drives the accelerator gear that generates the X-Rays, and a bunch of monitors that are connected to cameras in the therapy room so they can make sure I'm OK during the therapy.

I was then led into the therapy room where I was asked to lie on a table behind which the accelerator gear sits. I then had my (previously made) mask fitted and clamped to the table, the lights were dimmed and the two radiation technicians lined me up by moving the table to align lasers on the the mask's alignment points. The lights were then brought up very brightly (I guess for the benefit of the cameras) and I was told that the treatment would now start.

The technicians retired to the safety of the control room and after a few seconds I heard the accelerator head (if that is the right name) positioning itself for the first of two 3D doses. Each dose lasted about a minute with about 30 seconds repositioning time in between. All you notice during the treatment is the whine of the accelerator as it delivers the dose and the whirr of the robot as it repositions.

Once completed one of the technicians came to release me from the table and we said our goodbyes until tomorrow.

Brunch & Bowling

Every fortnight (two weeks for any non-European readers) we host a Family Brunch which usually starts (late) at around 11 or 12am, and today was no different.

It is a rather busy affair with at least 7 adults and 2 children all pitching in to do a full English style breakfast with the addition of Muesli (in respect of our home country :-).

Occasionally we have friends around too, so today we had 9 adults and the 2 kids. For me these events are a highlight and am often disappointed on the quiet weekend in the middle. It is one of the few chances to have all the kids and their partners around us and the conversation (in our usual mix of English and Swiss-German) can go on well into the afternoon.

As it was the first time we had talked to our friends face to face since the discovery of my tumour a lot of our conversation was about my progress and how we as a family were all taking it.

Late in the afternoon this week we went 10 pin Bowling to wear of some the excess food and many of the participants were still around for dinner.
Some of the simplest of pleasures with friends and family are the most joyous.
In the evening (after a very small seizure) I thought for the first time it might be a good idea to start a blog. So many of the cancer blogs I have read concentrate on the disease and its treatment and forget to mention the the rest of life that goes on around and with the victim (its too early to say sufferer, and I hope it stays that way).
I'm hoping to cover it all, if I'm brave enough.

Meditation

Yesterday's warmth has gone away.

About 10 years ago when I was going through a bit of a life crisis I thought I might get into meditation as a way of trying to get better contact with my inner self. As I was obviously really serious about this I bought the smallest book I could find (on Venice Beach, so you can clearly understand my frame of mind). The book was called "How to Meditate" by a guy called Lawrence LeShan. It turned out to be a very good and objective little book that explained meditation in its own terms and used "religion neutral" terms while giving examples from many beliefs.

Anyway, as you can guess I tried counting my breaths for around two weeks and not having had any out of the body experiences by then gave up. Carol's got a tattoo on venice beach probably the same day, that has lasted much longer than my meditation (I love that little butterfly today as much I did then)

Given my current mental state of up one day and down the next, I thought I'd dig the book out and start doing a little meditation for much the same reason as I did then, but with a much higher level of motivation now.

The Breath Counting starts today.

Somethings Changing

My right side is feeling different, kind of warm. Its almost as if I have a semi permanent pre seizure build up that never reaches its climax.

Seizures are back

Unprovoked focal seizures back with a vengeance today. I had three of them, accompanied by a bit of a headache.

Radiation Planning

In order to make sure I am correctly aligned with the machinery that doses out the radiation, I have to be put inside a custom made mask that is clamped down and then aligned using a bunch of laser pointers glued to the ceiling. So I was in today to get my mask made and the laser markers put in place using CT scans as a guide.

So I lie on a bench with me top off and a CT Scanner behind me while a couple of nice ladies take a sheet of warm wet flexible translucent green plastic and lay it over my face. On each side of the gooey plastic are metal clamps that are clamped down to the bench on either side of my head. After what seems like minutes they deem to make a reasonable size breathing hole and then start sticking their fingers in every lump and bump on my of my face - including my eyes.

Once satisfied with a good tight fit they wait for the goo to harden giving an additional poke every now and then for good measure. Once fully hardened they take a set of CT scans and then mark up the mask with various target symbols (for the laser pointers).

The newly created mask (anybody seen the movie Hollow Man?) is then unclamped and gently ripped of my face and thus removing any need for a shave today (shame about the beard though).

They then take my photograph (I guess so they can all have a good laugh later) and send me on my way.

A thoroughly unpleasant experience (and remember I had Brain Surgery 3 weeks ago).
I wonder what they do with claustrophobics, use opaque plastic?

The Chemo Man (Oncologist)

Today's appointment with the Oncologist responsible for my Chemo dosage didn't really tell me anything I didn't already know, but I guess it was nice for him to take the time out.

I'll be taking Temozolomid (trade name TEMODAL) which thankfully comes in nice colour coded tablet form. In order to calculate the dose they take your weight and height and work out your body surface from that (mine is 2.0 square meters)

For the time I am having radiation therapy I'll get a dose of 75mg/sqm per day (150mg)
1st post radiation cycle starting 4 weeks later I'll get a dose of 150mg/sqm (300mg) for 5 days
2nd-6th 28 day cycles I'll get a dose of 200mg/sqm (400mg) for 5 days
And rumour has it they keep going until it stops working or they try something else.

Summary: They stuff me full of Toxic stuff for as long as I can take it
If you want to know how toxic see http://www.fda.gov/cder/foi/label/2005/021029s008lbl.pdf

My current plan is to see how well I'm doing after the concurrent phase and then try and get some extra poisons added (high dose Tamoxifen and Thalidomide) if I feel up to it.

Radiation Oncologist Appointment

Had the first appontment with my Radiation Oncologist today who explained how the Radiation Therapy portion of my treatment will work.

I am going to receive "conventional" external beam Ionizing Radiation (X-Rays) using a method called Conformal 3-D. This is where they focus the beam at the tumour area and a small margin (in my case 3cm). They also come in from different directions in order to reduce accidental "treatment" of good brain.

The way radiation therapy is suppoesd to work is quite neat, it disrupts the DNA of the fast reproducing tumour cells while leaving the healthy cells mostly OK. Normal cells are also better at repairing any damage from the radiation than tumour cells. This repairng capability is helped along by breaking up the treatment (fractionation) over 6 weeks.

I will receive 60 Gy (Grays) of radiation which is considered to be the maximum dose that a human can safely take (radiation is cumulative) at 2 Gy a day in 30 sessions for 6 weeks.

In order to plan my treatment I'll have to come in for a planning session next week. This will involve making a mask for me and taking CT scans to position the tumour in relation to the mask.

Likely short term side effects from this treatment are tiredeness, soreness and hair loss around the beam entry points.

I wish this wasn't taking so long, I just want to get going before that little bastard gets much bigger.

One Birth, and a Death at a Funeral

Went out to the cinema in Zürich tonight with Carol and a friend of ours to see the movie Death at a Funeral, highly recommended to anybody who likes typically British farce (Frank Oz directed and shows his heritage). Funny how people think I would not like to go to movies with death and funeral in the title...

After the cinema we went to eat Italian and just before 10pm while waiting for the train home we got a phone call from my daughter saying her waters had broken, so we had to change destination to go and pick up our grandson Leon as it was planned for him to stay with us while Kayleigh was giving birth. We got to their place at about 10:45 and Kayleigh went straigt into hospital and at 11:52 she gave birth to a beautiful baby girl - Tasija (from Anastasija).

No hanging about with the Gardiner-Smiths (even when they're Mosers :-)

Picture is Leon, Kayleigh and Tasija, aren't they gorgeous.

It's feels so good to be alive.

Seizure at 140bpm

On Sunday Carol and I took a 12km walk along the ridge of the Heitersberg (on which we live) with no no little events. so I thought I'd give the Exercise bike a try today, but keeping the heart rate at 140bpm.

Just as I thought everything was going to be OK (after 25 minutes at 140bpm), a very mild seizure hit home.

Major Depression... Need to talk to the doctors about increasing the dosage.

Seizure at 150bpm

Since they fine tuned my anti-seizure medication I hadn't had a focal seizure in 10 days, now they are back.

I decided to do some fitness training today because I have let exercise go to the wall in the last month. We have a little fitness room in the cellar with a treadmill, a fitness bike, a rowing machine and fixed and free weights. I thought I'd hit the treadmill today. I normally do aerobic exercise at around 150 heartbeats per minute.

After about 10 minutes getting up the to pace and then a further 10 minutes at the target rate, the now familiar prickling sensation in my right hand arm started. I stopped exercising immediately but, of course, it was too late and I had to wait for the thing to finish.

This depressed me no end as I have done regular aerobic exercise for years not just for fitness, but for the high from the adrenalin. Now it looks like I am to be denied that as well.

Telling the Family

A few years ago the company I was working for was downsized, and I had the job of laying off a few of my team. Until today I looked back on that as the most painful job of my adult life.

Today's job was infinitely more painful, the job of telling my family the truth about my disease, and the prospects for the future. Needless to say it was a very tear filled evening.

I think today is the first time I've really understood what it means to have cancer. I guess there are going to be some more days like this.

Diagnosis & Treatment

Carol and I were a little suspicious when the Neurologist ask us to come into the hospital to get the diagnosis news rather than get it over the phone. So we quietly drove the 35km to the hospital to be told the bad news.

Essentially I have been diagnosed with the worst kind of Brain Tumor a Glioblastoma Multiforme with a survival rate of 25% at 2 years (with treatment). These tumours are incurable and the only hope is to slow down their growth with therapies such as Radiation and Chemo. It is most likely that this will kill me. That is quite a lot to take in.

---------

The rest of this posting is the technical details of the diagnosis:

Diagnosis: Glioblastoma Multiforme (malignant grade IV astrocytoma)

In order to get to this decision both cell pathology (histology) and tumour behaviour were taken into consideration

Pathology reported that all tumour cells were from brain material (primary tumour) and indicated a low grade astrocytoma with high grade areas found in one of the four samples taken during the biopsy. While Pre-surgery MRI's show that the tumour has pretty much DOUBLED in size in the 19 days between scans. This rate of growth is normally associated with high grade tumours.

Treatment:

Given the combined evidence of a Glioblastoma Multiforme , the tumour board 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.

Treatment cannot start until I have recovered from the Biopsy (basically until the scar has healed) because both Radiation and Chemo affect the healing process.

Preliminary Diagnosis

Just before I was released, a junior Neurologist came to give me my release report, along with the preliminary diagnosis from 3rd September,

Tumour appears to be a malignant Astrocytoma grade III.

The full diagnosis would be given to me on 5th September following a meeting of the hospital's Tumour Board (a group of senior peers from Nuerosurgery, Nuerology, Oncology and Radio-Oncology), who would agree on a diagnosis and proposed treatment.

Last Day in Hospital

I've been told I can go home tomorrow.
best news since this all started.

When I was admitted for my operation, I volunteered to be a case study for a student nurse (I was picked through a long selection process that involved figuring out who was the only person admitted on the day she came on duty).

Most of this just meant she could get access to all my care reports and stuff, but as I am leaving tomorrow I had to spend an hour answering a lot of questions for a fairly extensive study on the psychological effects of being in hospital, and how your illness had affected your emotion and philosophies on life. Much to my surprise I got quite tearful a couple of times during the interview, and once again I realised how expressing emotions is really hard in a language (German) that is not your mother tongue (English).

The student nurse was very sweet and understanding, I think she may have chosen the right profession.

The Rhythm Continues

1st/2nd September
The rhythm continues, and I feel like I want to go home.
Keep getting told off for not resting enough. Spend as much of my days as possible on the balcony reading in the sunshine (but I have to wear a hat to keep my plate out of direct sunlight otherwise it gets hot).

I'm on the last book of Otherland by Tad Williams, and I'm trying to finish it before I get out of hospital. The i-pod is on random and I've started to make a list of my favourite songs of all time. It is going to be a very long list.

It is starting to sink in that my life is likely to be a lot shorter than I expected. I'm a lot less shocked by the prospect than I thought I would be.

The Scar

Apart from the usual rhythm of the ward, the only notable thing today was the changing of the dressings on my head. Why? because it is the first time I got to see my new scar!

Not really competition for Frankenstein's Monster, but still pretty substantial, and the monster didn't have a titanium plate to cover any of his holes (not that you can see it).
(Note: Picture is from about 3 weeks later and as such a little less bloody)

Recovering from surgery - Day 1

Woke up still in intensive care but felt surprisingly OK.
Doing a quick check list of everything I discover that apart from a mild sore throat (no doubt from the tubes that had been previously stuck down my throat) a slightly sore head (obviously) and that bloody catheter I really didn't feel too bad, and I was HUNGRY!

The nursing staff allowed me to sit next to the bed for breakfast. If I had known how much hassle it was going to be to manoeuvre all of the cables and tubes I might not have chosen to do so. But once installed, I tucked into a good continental breakfast.

The morning rounds (with obligatory hordes of students) appeared during my breakfast and it was obviously time for the chief's little joke. "Ah, can anybody tell me what indication of total recovery from surgery we can see in Mr. Gardiner?" and after a few seconds silence "... he is eating breakfast. Lets move along then"

After breakfast I was told I could return to the ward (maybe it wasn't a joke) and the process of disconnection started. On my insistence the catheter was first to go, and once all the pipes, cables and leftover connectors from yesterday's operation had been removed a porter was called to wheel me back to the ward. Only the solitary saline drip remained.

I have a theory about saline drips that they serve no medical purpose whatsoever, except to help you tell apart fellow patients and medical staff.

On the ward the routine of Take Meds, Blood Pressure. Eat, Snooze, Read a bit, ... fell back into its rather comforting rhythm only interspersed with the joyous moments of visitations of friends and family from outside.

Surgery

Up bright and early for a 7am start in theatre.
High on Pre-meds I can't help sniggering as I am wheeled into Theatre 13!
I go under precisely on time.
After 5 hours in theatre, my first reaction on waking is to throw up.
I believe the technical term is Post Operative Nausea.
Very impressed by the speed of the nurse with the bowl.

I'm moved into Intensive Care (normal procedure)
I FEEL AWFUL and look like something out of a 50s Sci-fi B Movie with pipes everywhere
I plead to have the catheter removed to no avail (if you've never had one, you cannot guess how uncomfortable it is wanting to continually urinate, but knowing that you are doing it already)

Vague memories of a visit from Carol
And a visit the surgeon who told me the operation was successful, and they had confirmed that the tumour is pure brain material (i.e. Primary). Hoorah (I guess)
I was told that I wouldn't get the final results from the Biopsie until next Wednesday (5th September)

Hard to imagine how I slept, but I did, like a log.

Preparing for Surgery

Back in hospital ready for Biopsy on 29th August. After settling in, I'm dragged off for another MRI Scan to see how things are going (not that I get to find out at this point).

The Surgeon comes for a visit and I'm told by that he will be using real time MRI to help locate the tumour's position during the biopsy, due to its awkward position. He seem's quite excited.

I'm also told for the first time that the tumour is inoperable due to its depth in the brain and its proximity to the Basal Ganglia which is essential for motor management.

The surgeon turns up with a brain under his arm (yesterday's failure?) so that he can show me the rather awkward path through the brain he will have to navigate to get the samples of the tumour. You couldn't get much more inaccessible.

A Wedding and Many Little Seizures

Meet the Gardiner-Smiths: Joss (my youngest), Carol (the wife), Mario (the new Gardiner-Smith by marriage), Kayleigh (the new bride), Me (why have I shrunk?) and Amber (my eldest)

On 18th August my youngest daughter got married, and happily I was able to fully participate in this event. We had a great day. For a while I thought I wouldn't make it.

Suffering lots of focal seizures, up to as many as 4 per day. Fiddling with my medication dosage finally put them at bay just a day before my return to hospital for the biopsy (Timonil 1/0/2, Urbanynl (0.5,0,0.5).

Malignant or Benign?

Time to hit the Web to learn as much as I can about my condition and what sorts of treatments I might expect to be offered. I found an excellent site http://www.virtualtrials.com/ that publishes a great guide for the newly diagnosed, and it was in here I learned about all the types of tumours, the grading system used for tumours, and information on most of the treatments available forthe different tumours.

The guide is very frank and open and although I appreciated that, it did bring on some weepy moments for Carol (my wife) and I as we learned about these nasty things.

One major shock to me was how the use of the terms Malignant (bad) or Benign (not so bad) are misleading when it comes to brain tumours. Because the brain is in an enclosed space (the Skull)even benign tumours will grow to fill the brain space and cause neurological problems and even death.

Primary or Secondary?

11th & 12th August: A couple of Focal Seizures over the weekend sent me into a panic as I thought the whole thing was about to start again. These were things I would learn to live with for a while.

13th & 14th August: Back in hospital where the serious search for other tumours started. This would indicate whether the brain tumour was Primary or was the result of Metastasis from another tumour in the body (Secondary) which might also need treatment.

After CT Scans for Thorax and Abdomen and Ultrasound scans for the Thyroid and testicles it seems I am clean of other tumours indicating that my little friend is a primary tumour of the Brain. I guess one has to be thankful for small mercies.

My Neurosurgeon (it seems strange to have one of those) tells me that I will need a biopsy in order to find out whether or not my tumour is malignant or benign and to confirm whether or not the tumour is primary. Based on this they should be able to suggest appropriate treatment.

So its under the knife for a bit of Brain Surgery....For the first time since the original seizure I'm feeling a bit scared. The operation is set for 29th August.

Enter the Big C

Was moved to a normal ward (feeling fine), and after devouring breakfast I was sent off for an EEG, to check for epilepsy which showed no abnormal activity, and had all the usual blood and urine tests done none of which showed anything abnornal.

I was then shipped off for an MRI Scan of the head, where the culprit for my seizure was identified. "A circular 7mm lesion in the left had parietal region of the brain lying sub-cortical, inital diagnosis: Primary Brain or Metastase Tumour"

The Big C!

This cannot happen now, my daughter gets married next weekend, the house is being renovated, my second grandchild is due soon and work is just getting very busy.

I was also told I was not allowed to drive until a nuerologist cleared me for driving, usually at least Six Months following such a seizure!

I was let home for the weekend to think about all of this (driven by the wife of course)

An almost normal day

August 9th was a very normal Thursday, I had been working in my home office (I work for a large software company) and I'd just had dinner with the family and I was performing the usual ritual of washing up on my own.

At about 7:30pm I got a sudden fierce attack of pins and needles along with an horrendous burning sensation in my right leg which quickly spread across my whole right side. I rushed upstairs to find my wife as I knew something was seriously wrong. I sat on the corner of our bed and tried to explain how I felt, but my speech was failing me. I then fell unconcious.

I came around feeling very confused, to find two paramedics trying to communicate with me and preparing to take me to hospital. By 9pm I was in the emergency unit of Kantonsspital Aarau (Switzerland) being told that I had suffered a Grand Mal Epileptic Seizure.
An initial CT scan showed no signs of Haemorrhage. I was given some tablets Timonil (Carbamazepine) & Urbanyl (Clobazam) to prevent further seizures and told to rest.