Christmas

We decided that this year would be the first time our "kids" Christmas stockings (with little packages therein) but we resented for the baby of the family (17) because he hasn't had as many years of it as the girls. 

We also warned everybody that this year we would buy smaller presents for everybody now we have the new grandchildren and husbands / boyfriends,  another promise broken I think especially when I look at what I got (you really shouldn't have).

We did the baking early enough this year that before Christmas it had all gone and we had to do it again.

The Snow came down heavily on December 16th 

And had gone completely by the 23rd, so no White Christmas

This year we decorated in Blue and Silver because we have had Red & Gold (my favouirite) for too many years, I'm told.

We did the usual Chrismas day with the whole of the nuclear family plus electrons and the occasional photons coming around late Christmas Eve and staying 'til morning and forgeting to to leave until Boxing day. 

From the readings on the bathroom scales it was clear that we had a fine Chrismas.  

Confusing Scan's

I Got the scan CD at the beginning of December for the scans of November and I planned to do one of the super comparisons that I did back in July. Unfortunately that was not so easy this time.

For the past two sets of scans they used a different scanner (the left one for anyone being treated at Aarau Kantonspital) and when I looked at the two sets compared with the earlier scans it was difficult to make a simple comparison. 

Instead of showing a clear Tumour the pictures where a lot more fuzzy and indistinct. In fact to my uneducated eye it was a difficult to see what was going on. Also, the format was square rather rectangular and the resolution lower. I'm sure that the experts understand the pictures fine, but I would rather have pictures from the other scanner (the right one) to look at. I'm wondering if I have been put on an old (cheaper) machine while I have been improving?

Anyway the point is I am not going to put up the scans this time and I'm going to see if I can get on the other scanner next time. Perhaps I need to complain about some deterioration in my health next time to get on the better machine :-) 

Return to Blog - England Trip

It's been a month since I wrote in my blog and there is a lot to write about. So I'm going to do  a bunch of entries to catch up, starting with our (Carol and me) trip to visit Family and friends in England. Good fun, but not exactly relaxing when we are in our homeland. 

We drove to England (see route above) setting off at 6:30am in the rain, crossing France  and arriving in good old blighty about 12 hours later also in the rain. We took a ferry across the channel (cheaper than the chunnel and time to rest and get the duty free). Once on the mainland we popped in at Ramsgate where Amber's boyfriend Patrick was taking an English course and had some stuff for us to take back.

After being flashed by oncoming headlights a few dozen times we realised that we had forgotten to buy and fit headlight correctors  (you need them to stop blinding drivers on the other side of the road when driving a left hand drive car on the left side of the road, or vice-versa ) anyway we decided to carry on to my Sister Janet's in Welwyn where we were staying over the weekend.  As we past Rayleigh (Essex) we thought about popping in on on one of Carols aunts but as it was getting late we gave it a miss. Strangely we found out later that her aunt had died earlier that day.

Janet is my big sister being 10 years older than me but seemingly 10 years younger in pretty much all ways. We spent the weekend talking about all subjects under the sun and beyond, and Monday morning arrived in the blink of an eye.

On Monday we went to see my Dad who is 87 and suffering from final stage Alzheimers and is now looked after in a nursing home. At this stage of the disease he doesn't really recognise anybody anymore and sleeps much of the day. It is very upsetting to see him like this. 

My dad was such an bright and active man whose spent many of his weekends rock climbing, caving  and hill walking and even leading the "dangerous activities" unit in the Hertfordshire Scout movement while still in his 60s. 

We were at the home for a couple of hours with him drifting in and out of sleep with showing no response to our conversations, but then, in one of those events so common in Alzheimers it seems, I kissed his head goodbye and he woke up and became highly aware of us (possibly even recognising us). We then spent the next hour or so looking at old photos with him quite often recognising (with some help) people and places. It was lovely that when we finally said our goodbyes that we knew we had experienced one of his more lucid moments. 

Next stop was to Crowland near Peterborough to visit Carol's mum. I don't know what Carol and her mum talked about but I had a good old time talking to Carol's step father about our usual topics, PCs, Technology and the state of Britain :-) We took in a bit of shopping in Spalding and then on Wednesday morning moved southward to the north of Stevenage Clan boundaries.

On Wednesday we spent a great afternoon with Jim, my oldest and dearest friend.  We have known each other since the start of comprehensive school at age 11 and grew up through those formative years together. On leaving school we went off in very different directions but continued to keep in contact despite that. More recently we have been keeping up to date on our respective healths as Jim is waiting on a Liver transplant. During our visit we found him in great shape but we know how quickly that can change. We  continue to hope and pray for a donor soon.

That evening we spent with my little sister (a whole 4 years younger than me) going through a lot of old photos that she had acquired and I have spent some time scanning and fixing.

Thursday found us at doing the odd bit of shopping in the pretty little town of Hitchin. Carol and I used to go to Hitchin from our respective homes in Stevenage quite a lot of in our teens to visit the good pubs (lots of Music) and to shop in the "hippie" shops. We hadn't been to hitchin for aroud 25 years so were suprised to find one of our favourite "hippie" shop still open and not to mention the local sweet shop with all the jars in the window see below.

In the afternoon we paid a surprise visit to the pub in Gosmore near Hitchin run by my 3rd sister Carol (7 Years older than me). Its always a pleasure to visit if only for the beer and homemade pub food :-)  Then in the evening it was off to Biggleswade for dinner with Carol's sisters Lyn and Debbie. It was especially nice to bump into Lyn's daughters.

Originally we had plan to drive home on Friday but because Carol's aunts funeral  was on that day we decided to shift coming home to Saturday so that Carol could attend. That gave me time to pop in on my stepmother in the morning and to do some shopping at Tesco in the afternoon for all those English things we find hard to get at home like Marmite, Cornish wafers, Diet tonic water, Marmalade, Curly wurlys, Crunchies and other such necessities of living.

This, of course gave us another evening with Marion and my charming nieces who had arrived home from Exeter and Aberdeen universities (why opposite ends of Britain I don't know).

Up early on Saturday got us back here early enough to have a good nights sleep to help get over the fun but hectic week.

 

Scans Looking Good

Sorry about the delay.  Lots of things been happening, but more of that later.

I just had to get on and say that after 3 months without treatment the latest MRI shows Tumour hasn't really changed and the fluid and scar tissue, although it looks a bit different (technical term), is looking OK too. So I get another 3 months reprieve, and can look forward to a treatment free Christmas and new year.

Carol and I are driving to the UK tomorrow (well I'm driving, Carol's riding) for a week of family and shopping. 

One of the reasons we are going back is to visit my dad. He is suffering from late stages Alzheimer's and I feel bad about not visiting him for a while.  He doesn't normally recognise anybody from the family any more and that is quite a painful experience. I hope it is less painful for him, but who knows what goes through his mind nowadays.

I doubt you'll hear from me until I get back but then I'll fill you in on all kinds of stuff.

Playing the waiting game

I can't believe that it is Three months ago that I got my reprieve from Chemo and other poisons, but the start of the check up cycle shows that it is.

Today I went to get the Creatine levels in my blood checked in preparation for the MRI at the end of next week. If you remember (now pay attention) the contrast agent used to get those cool MRI pictures can increase the creatine levels in the blood with consequential danger to the Kidneys, so I need a normal level (of less than 100umol/l) before they can do my MRI. Unfortunately today it was 106umol/l so I had to check with the hospital to see if it would be OK, thankfully it is.

After putting the phone down I wondered if my higher levels of Creatine was due to a couple of days of increased exercise as Creatine is used by the body to supply energy to muscle cells (hence its use by athletes as a performance enhancer). A quick look around the web seems to suggest it might a little but normally after prolonged exercise. I must check with my doctors if it makes sense to hold of the exercise before MRIs in future (any excuse).

So next weeks MRI is on and then a week later I get the results.
Again the waiting game.

Vote for the US President

Want to make your "unofficial" vote for the US president.
Check out www.iftheworldcouldvote.com and look at how the rest of the world think.

Thanks for the link Ruedi
p.s. blogspot has blocked the url for some reason so you will have to cut and paste.

Carol's Birthday

Happy Birthday Carol!
Still not caught me up, weird that.

Had a great meal at home just the way Carol seems to like things, having her family* around her. On second thought, that's pretty much how I like birthdays too.


*and one very good friend.

Danger Mobile!

Over the last year or so I have been reading a lot of literature on Brain Cancer and I can't help bumping into lots of studies going on relating to the use of mobile phones and tumours. What comes out of all this information (in my view) is that all the early studies that showed no correlation (e.g. the Interphone studies) had failures in the statistical methods being used (e.g. looking at too short a usage period, too low a frequency of usage, even EXCLUDING business users).

The more recent studies from Scandinavia (not sponsored by phone companies) that show approximately 5 times the risk of developing tumours have "fixed" these methodology problems. These studies also showed a strong correlation between the side that phones were held and the side of the developed tumours.

A particularly disturbing finding from recent studies is the massively increased effects on children and young adults.

What's more using phones with headsets, although no longer posing a threat to the brain, does not remove the risk to the lower body from carrying the phone in the hip pocket. Studies have already shown lower sperm counts and damage to bone marrow in the presence of mobile phones.

So far we have no conclusive evidence for any of this, but I'm telling my family to use headphones whenever possible and to use a case which keeps the phone a little away from the body. Also I will not to let my grandchildren anywhere near mobile phones when I'm around.

I'll keep you posted while I'm still around to do so.

p.s. I have been using mobiles held against the left hand side of my head for over 10 years, the side of my tumour. Who knows?

Athens

Just got back from 4 Days in Athens doing some work for a small Insurer. As usual with these these trips the only thing I get to see is the is the inside inside of meeting rooms, hotels and restaurants. My favorites are always the restaurants with this time being no exception. Now all I have to do is try and loose the extra Kilos.

Like Moscow we had to do a lot through interpretation and I realized pretty quickly that the issues we had in Russia had more to do with culture than Language.

Thanks for making our stay so pleasant everybody, look forward to coming back to Athens again soon.

Tropic Thunder

Went to the cinema with Amber and Carol yesterday. We saw Tropic Thunder
with Ben Stiller, Jack Black and Robert Downey Jr and Tom Cruise (in a quite different role for him). It all had Steve Coogan playing an excellent role as a film director.

Plenty of fun ensues when everything goes wrong filming a war film in the Jungle.

Afterward we met up with some old friends of Carol's and mine from our days in Banking IT for a drink and some food. Given the current situation with banks you can guess what we talked about much of the evening.

Next up on the Treatment Diet

The last couple of weeks I've started to be a bit more thorough looking into what might be next for me on the side of Tumour treatments and I've found there is a lot of reading to do.

My expectation is that in November things will look much the same as before but then the Tumour will start hitting back. Given that situation we will need to find a next phase treatment in the new year. One option is to go back on to Temodal (Temozolomide) and hope there is still more to be had before the resistance sets in. Another option is to go directly to the 2nd line treatment of PCV (Procarbazine, Lomustine & Vincristine) .

A third option is looking for a promising Trial that is aimed at Grade 3 & Grade 4 tumours. Failing to qualify for my favourite TTF trial (as I was downgraded), there are some promising results being shown from DCVax-Brain a Gene Therapy Vaccine but unfortunately all the trial sites are in the US.

But then again I could be completely wrong about what happens over the next few months.

The Work Ethic

I am having real problems keeping down my work to the level of my doctors orders and I am feeling it a bit too, having had light cold symptoms over the last couple of weeks. I have also found that I have been missing out on exercise and putting on weight.

Even though I know that I have to take care if I am to stretch my life out a little, having spent the last quarter of a century working more than 40 hours a week continues to push me to take on more work than I should. I think I need to do something more drastic after the end of October, but before that I am committed to get a couple of jobs in Greece and South Africa done (I know, I know).

One more Birthday

The week started with Leon's 3rd birthday party, here he is at the Computer keyboard just like his granddad, but just look at the speed of the hands. No wonder his mum looks down in awe :-). Happy birthday Leon.

Playlist

I haven't mentioned my playlist for a while and I have been listening to tons since February; some new, some old, some older newly discovered and some rediscovered. Here are some of them.

New

Coldplay - Viva Lavida - Nice change in style enough to drag me back to the Coldplay fold.

Sigur Ros - Með suð í eyrum við spilum endalaust (which translates as "with a buzz in our ears we play endlessly") . I should be bored with their warbly vocals and endless plains of minimalism with the inevitable crescendos. BUT I'm not and I don't think I ever will, musical Ambrosia.

Portishead - 3: Portihead is back as good as ever

Alanis Morrissette - Flavours of Entanglement: I've been buying the last couple of Morrissette albums out of habit. I think this is last one, all the originality has gone

Old

Nick Cave - Everything he has ever done (have just filled out the missing ones)

Otis Redding - Collection: Sitting on the dock of the bay

Django Reinhardt - Swing 39, Just swing

Anita O'Day - I Told Ya I Love Ya - Exhuberent jazz vocalist from the 40s on.

Robert Johnson - One of my favourite blues artists (next to Skip James)

Smiths / Morrisey - I never liked the Smiths and I put this down to Morrisey's voice and then I heard some Morrisey (solo) songs and I liked them so started listening to more Morrissey and Smiths and discovered I still don't like the Smiths much but I like Morrissey on his own.

Old Newly Discovered

Sometimes you find things and you wonder how you missed them the first time around? Well here are a couple from the 90s (thanks to Alan for reavealing them to me :-)

Alabama 3 - Electronica Country, Gospel and other Americana complete with southern aceents from London. And its good too.

Mercury Rev - "Deserters Songs" and "All is Dream" are my first samoles from these Neo-psychedelics that started in 1991 and are still going.

Les Rita Mitsouko - Been listening to lots of this bunch of French vaudeville rocksters. I like "Marc and Robert" and "Re" the best. Bit like a cross between the Eurythmics & Sailor.

Miranda Sex Garden - You just have to listen to a band with that name, and its worth it.

Hello from .... home

Yep its true. After my San Francisco trip being on and off for weeks, it was finally cancelled on Thursday (just in time time to cancel everything at no cost). What nobody calculated was how much of my time was wasted  on line with the travel agents. Oh well C'est la vie.

Lots of Birthdays at the moment. On Friday we were celebrating the birthday of Christine, a very good friend of ours (who's age escapes me :-)  and she had chosen a restaurant that had an interesting Starter and Dessert strategy with their menu kind of in line with a Tapas style consisting of as many little starters and deserts as you want to eat. I can't think why they bother with the main course. Good pigging out recommendation, but somewhat expensive for the quality of the food. Anyway, at sometime during the evening we got to talking about my health and I said I was fine and had no seizures for over 4 weeks... guess what happened on Saturday. 

Still suffering slightly today after taking the grandchildren to one of these indoor soft adventure playgrounds. You'd be amazed at how many new muscles you can still find at 50. I have to say I think their dad had more fun than the kids, but not me, oh no.

Next Birthday, Leon, grandchild no 1 on Sunday.

Happy Birthday Tasija

My grandaugter Tasija was one year old last Friday.  Here she is working on the Crisp pipeline. It seems incredible how quickly the last year has gone by.

Weather has been awful the past week or so so I have been spending a bit of time tidying up my Music collection. I've been putting on missing album art and fixing the other tags, I have also been making sure the MP3 (for the i-pods) & FLAC (for the Hifi, SONOS) collections match etc. When the weather has been OK Carol and I have been doing the autumn shutdown of the garden. I've been putting the pool down (will it ever go up again?) and have been high pressure cleaning the Drive, there is some highly satisfying seeing the clean stripes following the nozzle even though it takes so much time (2 afternoons so far).

I have had a trip to San Francisco (Open World) planned and cancelled several time over the past few weeks. Today it is on and assuming it continues that way I'll be flying out on Saturday.

I'm presenting a seminar at the Naturhistorisches Museum in Bern for the IET (Institute of Engineering and Technology) on Thursday called "Using capability and service oriented architectures to directly align business and IT goals"  Nice short and to the point don't you think. If that kind of thing excites you I and the IET would love to see you there.

Amber goes west

Been a while since the last entry, so I still haven't disciplined myself for more regular updates. I think I'll have to set up to-do items in my work Calendar as they get done (mostly).

Amber has been busy this week. She had already her University Bridge studies and got the results on Tuesday....she naturally passed. She had already got provisional offers from Basle and ETH (Zurich),  so she is now running around trying to find rooms in Basle where she has chosen to study Biology.  Basle is the home  of dozens of Pharmaceutical and Life Sciences companies including Novartis & La Roche so Biology and Chemistry is a real strength there. Carol and I are so proud of her, we know she will enjoy the next few years of "study", but we will miss having her around.

Been a busy for me week too; lots of work putting together a architecture report for some of our Russian friends. 

The Builders were finally out as of Thursday. So remember this equates 3 builder days as 5 elapsed weeks in normal human terms. Anyway we can now put the finishing touches to the Kitchen that we decided to do ourselves, this is mainly paintwork, electrifying the breakfast bar and various oddments to go in cupboards and drawers. We also scoured most of North West Switzerland for Bar Stools for our breakfast bar only to buy one of the first we saw. 

It is wierd having the Chemo out of my routine, I have so much more time available now, Unfortunately I am not feeling the health benefits yet as Carol and I have both caught colds

A Break from Chemo

More news from Tumourville.

I got the results from the latest MRI scans yesterday and although there is no more shrinkage what is left is showing a lot less contrast. This is caused by less contrast agent being taken up by the tumour area and indicates less activity in the tumour. The bad news is that the current chemo treatment may have reached its limits for now.

Anyway the hospital tumour board has decided it is time for me to take a three month rest from Chemo. This should allow my body to regain some of its old strength and hopefully build me up for the next phase of the fight.

I'm obviously in two minds about this but I'm very thankful for the break.
Getting the results from the next scan (in November) is going to be pretty scary, but until then time to enjoy at bit more life.

Goodbye Olga

Moscow: On the surface it appears like any other major city in the world (too much traffic too many MacDonalds), and to the tourist that is how it would always seem but when you spend time with real Russians for a few days you start to get a peek at the the capital of a vast country that has been oppressed for so long it is having trouble growing up.

As usual with nearly all business trips you spend so much time in meetings that all you get to learn about your host country is through the corporate procedure and politics, through the food you get to eat and through the usually candid discussions you have with your colleagues.

So what did I learn about this little, but important, bit of Russia

• That it really is a tiny piece of a vast country spanning 11 time zones!
• Borsch (beetroot soup), Pelmeny (meat dumplings) & Blinis (russian pancakes) are good. In fact the food is great, except they use Dill everywhere except on fish.
• Vodka is drunk at the beginning of a meal.... and often in the middle and end too.
• Vodka is taken in one swig, and is proof of your ability to become a Russian (thanks)
• Corporate politics is worn on the sleeve
• You always know who the boss is, he/she sits at the big raised desk forming a T with the table at which the plebs sit.
• IT is about 10 years behind western Europe
• Red Square isn't
• There are lots of Redheads and Blondes in Moscow
• The Redheads are real
• There is more to the problems in Georgia than our press are telling us (hint: BP)
• Police corruption is so rife the citzens of Moscow have unnoficial fines lists so they know what the current rates are (10'000 roubles for a drink driving offence, cash of course)
• There are more billionaires in Moscow than any other city in the world
• That Moscovites don't know where their river (the Moskva) starts and ends
  (just teasing guys)
• I can't understand one word of written or spoken russian

прощание для теперь москва

Moscow

I'm quite excited today as I paying my first visit to Moscow tomorrow and the next four days. I hope I can take at least a little time off of from meetings to at least a little look at the city.

Goodbye Leroy

Since last September I have been closely following the Blog of another cancer patient Leroy Sievers. Last Friday night Leroy finally gave up the fight against cancer and passed away.

Leroy was a War correspondent who went on to become Executive Producer of ABC Nightline. Leroy had Colon cancer six years ago that was sent into regression only to reappear two years ago as a Brain tumour (then Lung and Spine). Those of us that read his blog knew that that his illness was terminal and that he was losing the fight over the last couple of months but it was still a shock to read the announcement. I feel like I've lost a friend even though we never exchanged a word in the time I subscribed to his blog and I'm sure that goes for all of the people who logged on daily to find out what was happening in the world of Leroy Sievers.

I wish you eternal peace Leroy, you and your blog will be sorely missed.

Three different kinds of pain

LITTLE ACHES & PAINS

The pain has gone from Hip via my knee and it is on it's way out of my foot, seriously. I still don't know what caused it or why it moved, but in the middle of Chemo time all sorts of odd things happen (I had pins and needles on the scalp near the tumour yesterday, figure that out).

Amusingly my doctors, great as they are, also don't know what causes most of the oddities, they dutifully note down everything I say and make "mmm" kind of noises and then give me a very professional smile and say "anything else?".

For example, last week when I picked up my Chemo, I got a quick check up (Blood Pressure, Reflexes, Pupil dilation, the Ahh test and the Cough test) by an enthusiastic young doctor. After finishing, and telling me how fit I seemed (huh), he asked me if everything was OK (I always find that a bit of comical, asking a Cancer patient if everything is OK) I answered the usual "Yes, but" (when the answer should have been "No it bloody isn't, I'm dying you little pipsqueak") and then listed the usual complaints. When I reached "occasional annoying headaches around my left temple", he asked "do you get the odd headache just under the bone at the back of the Skull". I was stunned, "Yes, I do", I said, and then sat there quietly expecting to be enthralled by an eloquent explanation to these front and rear headache combinations. "Mmm, interesting" he said "I have another tumour patient with exactly the same condition" then he noted this down, gave me a very professional smile and said "anything else?".......

KRANKENTAGEGELD, INVALIDITÄTSVERSICHERUNG AND OTHER LONG GERMAN WORDS
These are words I didn't think I'd be paying too much attention to for a few years, but circumstances have changed all that.

In Switzerland, as pretty much all countries Europe, we have a set of social insurances which we pay into when we are employed and healthy so that we and/or our dependents have some income when we are not. The main insurances are old age and survivors (Alters- und Hinterlassenenversicherung or AHV) insurance and Invalidity (Invaliditätsversicherug or IV).

Because I am only working 30% at the moment I am receiving money from an (employer financed) insurance (Krankentagegeld) to make up much of the difference. This lasts for two years.

After a year on working less than 60% I can now claim IV (or rather must claim IV as far as the Krankentagegeld is concerned) . Being a social insurance the means filling out a ten page form giving your life history and waiting about a year (they say about 6 months but I am told it is about a year) before you get anything. Luckily the Krankentagegeld includes an insurance to make up the shortfall. Insurances for insurances, I suppose it is only to be expected.

So that will keep my financial security intact for the next year I hope. Then, I guess I'll be talking about AHV, 2. Saüles and no doubt more long words.

LEGALESE
Legalese is a universal problem, and it doesn't matter how long you have worked with a language legalese can waste hours of your time. While working through all this insurance stuff I had to sign a 2 page agreement (Vereinbarung) full of complex sentences on what could have been written in 3 sentences of plain German (if their is such a thing). After spending nearly 30 minutes deciphering this mess I still couldn't work out whether I had to send one or both copies back, neither could my daughter (a very fine German speaker) or her boyfriend (a native Swiss-German). In fact the pair of spent considerable time arguing their opposite cases.

Happy Birthday Tumour

I'm back on the Chemo at the moment which always makes me a bit miserable, add to this I managed to hurt my hip somehow such that I was hardly able to walk yesterday, Today it is feeling a lot better but I'm still hobbling about in a nauseous daze. I just wish I know how I dit it, Carol reckons it is a touch of arthritus but I then had to remind here SHE has the arthritus, I have the tumour.

One year ago today at around 7:30pm, and completely out of the blue, I collapsed with (what I call) my Big Seizure. I can't believe that a year has gone by, in fact I swear that the days are getting even shorter for me now. Anyway I should be happy, my tumour seems to be under control at the moment and I am pretty fit all in all.

I have my regular MRI Scan this week but unfortunately is more than a week later I get the results. I'm hoping for no tumour and a rest from Chemo. But thats probably as likely as our Kitchen being finished in 2 days.

Who believes Builders?

Remember the "Pigs might fly" comment in my last entry after being told our kitchen work would take 2-3 days. Well they are still here (nearly 2 weeks on). Current estimate is 2-3 days. Thank goodness I have an UPS (uninterpretable power supply :-) in the office.

One of the fun things over the last couple of weeks has been cramming us all into our little party room for meals. I'm not sure Carol thinks the same.

Been busy on several work projects over the last week hence no other blog since the builders blog. It seems that most of my last week has been consumed by preparing a trip to Moscow the week after next. There is certainly a touch of the old Russia about getting a visa. The odd thing is that you have to get an invitation from, of all things, from your hotel.

Family Holiday

Got back on Saturday from a week in Gran Canaria with the family. Mostly we just sat around the pool until we got hungry and the went out for food, slept in late and then started again. To think that when we planned this holiday I wasn't even sure I would make it.

Builders started tearing our kitchen apart this morning. The work should last 2-3 days .... and Pigs might fly.

Fitting the Cancer routine

Strange how having Cancer has become part of lifes routine. As I can pretty much trust the Chemo rythym to make me sick on a specific 5/6 days in each 28 day cycles. So I now put them in my diary leaving me able to plan the rest of my life as around 100% normal (except the odd scans and result session).

1-2 Prepare Moscow event, Dentist
3-4 New aquisitions slide set
7 Prep Friday call, Pick up Chemo, Goto Market Webcast
8-10 Paris meetings
11-12 Chemo starts - Phone conferences and desk work only
13-17 Heavy Chemo Days - Light homework when possible
18 Customer Meeting
19 Off to Gran Canaria for 7 Days -- Hoorah

Its amazing how much work you can get done in less than 3 hours a day :-)
As long as it gets no worse than this I'll be a very satisfied sufferer.

Scan Pictures

Finally got the pictures for the Scans from the end of May. So now you can see what all the excitment was about.

This is the initial diagnosis from last August (no contrast agent used)



















Here was the shock growth only three weeks later before any treatment started.



















This was six months, much radiotherapy and chemo later in March 2008. The battle was really on.




















Finally in May 2008, we are just about back where we started. Next time we are aiming to see the tumour go up is own ****.



















Cool eh!

Suprises - Why we hate going to the Dentist

NOT FOR THE SQUEAMISH

A couple of weeks ago I went to my dentist and she discovered that a cyst had formed under a broken tooth. So on Wednesday I had to go in for a "little Operation" (that word should have given me a hint).

When I got there the dentist he explained that he was doing this work rather than my normal dentist because he specialised in procedures where there was a lot of blood involved! He then explained the procedure, he told me that he would first remove the tooth and then clean up where the cyst was. Following that, because the cyst will have damaged some of the bone, he will use a granulate that uses calves bone to replace the missing bone and that would allow my bone to grow in its place. Finally a membrane made from collagen would be sewed in place (using 12 stitches, I counted em) to seal it off.

So after 90 minutes in the chair without any drilling or pain, I was packed of with a new appointment, antibiotics, antiseptic mouthwash and pain killers (in case I needed them).

I needed them about 3 hours later when the pain started and continued in earnest for the next day. On Thursday the pain has gone down a lot, but I looked like half a Hamster from the swelling which is just starting to go down now (Friday Night).

Looks like I'll be back to normal just as my next Chemo starts, Ho hum.

Pool & Barbeque

Finally got a good weekend (29° C) since setting up the pool, so we had a perfect Pool and barbecue weekend with the whole family and a few very good friends. Too much food and just the right amount of Sun.

Never forget what lurks behind

When I first started this blog I didn't think that I would make an entry everyday, but likewise I didn't think I would go three weeks without saying anything.

When I looked at the date today I was shocked that so much time had gone past, time I don't have to waste. It's funny how easily I have slipped back into the old routine of getting up for work each day, and jumping on planes for meetings here, there and everywhere and forgetting to spend enough time with family and friends. I've even noticed I'm not reading the Cancer news bulletins. Its almost as if my Tumour had never happened.

But that just isn't true; despite the improvement we saw 4 Weeks ago, I'm still taking Chemo to fight the little bleeder and losing a week in every four because of it, I'm still battling the feelings in my left hand side and still making mistakes with my speech. And today I suffered a small seizure after four weeks without any (and don't forget the pills I take to hold them at bay).

I'm convinced you have to fight Cancer mentally and physically if you are going to keep it at bay as long as possible, and that means reminding myself I have it, I must never forget it no matter how much I want to.

I think I understand why my doctors won't let me work at my day job any more than 30%, its because I have another job to do ... fight Cancer

Maybe I'll get back to my blog a bit more often too.

MRI scans results

The MRI results are in, and they look good!

The tumour has definitely shrunk. After the last scan it appeared on 3 scan slices and now its only appearing on one. I reckon that it looks smaller than when it was diagnosed 10 months ago. Both Chemo Man and Professor Nuero were there to bring me the news this afternoon and they couldn't wait to show me the results. This is the first time in the last 10 months I almost cried with joy.

More good news; they are now happy to let me drive (although still recommend against the motorbike).

There is a down side to all this; given the excellent response to the Chemo and the minimal side effects (apparently) they are recommending 3 additional Chemo cycles to keep pushing down the curve. It took me less than 30 seconds to make the decision to continue (without feeling any pressure from Carol's "you bloody better"). I still have to way up the damage the Chemo is doing to me but that is damage I'll probably never get to see, so the choice is no choice.

I talked about increasing my working week from 30% to something closer to 100% and both Chem and Neuro shook their heads violently in unison, telling me that these results are almost certainly to some extent due to not overdoing it. So sorry work chums I'm under doctors orders to keep it down (however much it might hurt).

Now I'm going to sit down for Pizza and a glass or two of wine with a big smile on my face.

The Game of Pool

You know how some days you spot a bargain as you wander around the shops or in a brochure that came through the door and before you know it you are the proud owner of the next must have widget only to find it is the start of a new unintentional hobby?

Well my next hobby started last Thursday when I bought a Pool for the garden. No, not one of those six lane jobs that you bury in the ground, but somewhat more than one of those splash pools we had for the kids. Its circular, 4m diameter, and about 1m high, allowing the whole family to have a good splash about from the inside rather than the outside.

So there we were in Jumbo (a Swiss DIY sub-superstore) and in no time at all had the box on our trolley complete with groundsheet, pool, sunshade and pump. I guess the pump should have been the first hint at lurking hobby, once I had realised it wasn't used to pump the pool up.

We had just started towards the checkout when we were hailed down and asked if we got all of our chemicals, Uhhh chemicals? The kind lady took us to the floor to ceiling display of granules, fluids and indicators all of which, it seems, are essential for the hygienic running of the pool. After scratching our heads for 15 minutes we opted for the Starter Kit and added 25% to the bill.

Things we did not observe in the heat of the purchase, No. 1:

• Unlike paddling pools (which are emptied down the drain at the end of the day), the water in a larger pool stays there! A continually monitored concoction of (mostly dangerous) chemicals is required to keep it as it came out of the Tap.

After spending much of Saturday reading up on Pool chemistry (yes it is a subject, but I won't bore you with the links) and performing a number of calculations I felt confident I could get my PH balanced, my Chlorine at the right level to prevent removing the skin of the bather, and sufficient anti-Algae to stop them going green.

So by Sunday we were ready to put the pool up which the manual confidently told us would take 30 minutes. First step, check the ground is level to prevent "Inundation". We had a good look at the ground and it looked flat, but when we started to fill the pool we found an 8cm difference from one end to the other.

Things we did not observe in the heat of the purchase No. 2:

• That water is heavy and with an above ground pool you need flat ground to prevent the pool bursting and sending 10 tons of water across your garden and carrying this years expensive plants with it.

Much of the rest of Sunday was spent digging up the garden to get it flat. As the sun went over the yardarm the pool was back in place and we were starting to fill it. By midday Monday (with a short break) the pool was full. This is another difference from a paddling pool.

Things we did not observe in the heat of the purchase, No. 3:

• It takes a very very long time passing 10,000 litres of water through the eye of a Camel, or something like that.

After Lunch on Monday the chemicals went in without event, probably due to my thesis work on Saturday (see study does pay off kids). Now it was time to attach the pump (used for circulation I've discovered), which needs electricity.....and needs to be switched on three times a day for 2, 4 and 2 hours. The extension cable and setting an alarm really doesn't cut it, does it. So off to get some outdoor cable, sockets and a timer.

Things we did not observe in the heat of the purchase No. 4:

• A purchase is always a beginning but never, never an end

Next installment: Garden Electrics including laying cables, measuring the pool chemistry for the regular (2 days - 2 weeks) additions, cleaning the pump filter (every 2 days) and changing it (every 2 weeks).

I wonder whether the nightly dream of being carried away stark naked on my bed by an unexpected inundation will ever stop.

Scientifically testing the Chlorine levels (I use taste for Algae). Note the "spare tyre" pool shape is reflected on the bathers body...curious.

40 minutes in the Doughnut

Spent an hour at the hospital this morning to get my latest MRI. I've got so used to this procedure of sticking my head in a doughnut for 40 minutes that I managed to get some extra kip. I only woke up for the radiologist (or is it a Magnetologist?) to stick a needle in my arm to introduce the contrast agent.

I must ask sometime why they do one set without contrast and a second (much shorter session) with.

My appointment to discuss the results are not until Friday week. This is my first MRI post Chemo treatment, so I'm quite looking forward to the results.

Career Decisions

To be honest my life hasn't changed a lot since I was diagnosed with my tumour nearly nine months ago. Sure, I have been through some uncomfortable therapies (and a little Brain Surgery) but I haven't been stopped from living a full life. I still work around the house & garden, do the washing up, go shopping, take holidays, (try and) keep fit, listen to music as much as ever, and enjoy the company of my family when they are around. I have also been working quite a lot, and was hoping to do so more if the treatments are finished for a while.

I guess I think about my disease several times a day. Sometimes its just when I'm taking my pills or when I accidentally see the hole in my head reflected in the mirror (or some kid stares at me just that little too long on the train), other times it is when I want to pop out and I know I have to to take a bus or rely on Carol to get me where I want to go. But none of these make me feel sad or depressed as they are just little life adjustments.

Today, though, I decided to let a colleague go to an important conference in my place. I would normally have been expected to attend this in my role, but I decided quite rationally to make sure this colleague started to take over my role more.

This was giving up on my career and it hurt!
I need to think about this....

Blood Tests

I am booked in to the hospital next Wednesday for an MRI with contrast, so I had to go to the doctor this morning for a blood test to check my creatine levels (no not cretin levels).

Apparently the contrast agent can upset the creatine levels in the blood, so I need a normal level before I go.Wasn't that interesting?

Yet another hole in the arm.

Kennedy

It look as if I am in esteemed company.

"Preliminary results from a biopsy of the brain [of Edward Kennedy] identified the cause of a seizure as a malignant glioma in the left parietal lobe,"

Same symptoms, Same place, Same type (wish I could have waited until I was 76).

All my condolences to Mr. Kennedy and his family.
Might we see a Eddie blog?

Family Getogethers

Carol & I just spent a long weekend in England to visit family. Both our respective families have their recent roots in London (East End for Carol and Greenwich for me). Both of our parents moved out in the late 50's to Stevenage New Town (hence our chanceful linking up). Since then none of our parents, have remained (which if you knew the town would not suprise you) but spread themselves between Peterborough and London (except us, who are a little further afield).

To cut a long a long story short, visiting Parents, Siblings, Neices and Nephews is just about picking a couple of meeting places in between Peterborough & London.

Friday was spent at my In-laws, and after spending the morning at a drizzly Car Boot Sale (a favourite pastime of both Carol and her Mother) Carol's 2 sisters turned up with husbands and some of the Gardiner Nieces & Nephews. On the Smith's side (that's my side) we have the advantage that one my 3 sisters runs a pub in a little village near Hitchin, thus providing an ideal meeting space.

This is the first time that we have met our folks since my diagnosis, but it was really pleasent that nobody dwelt on the subject. It was a fun few days of reminiscing and catching up.

Love you guys.

Sudden Seizures

After two and a half weeks of bliss without seizures I had THREE in one day, today.
I have no idea what brought those on, but it has brought the average back up again : Bugger

Perhaps it was the stress of entertaining two Carol's at lunch :-)

Return to Blogsphere

Sorry I've been missing for a while. Its partly I haven't had too much worthy to write about and partly because I have been so busy. So here is a quick summary.

My really cool birthday present from Carol finally arrived. It's a 110cm high Indoor waterfull black, iconic and beautiful (and about 120Kg). Impossible to describe the water effect, but the shape is a pile of square granite tiles each one offset from the one below. It reminds me of the Black thing on the cover or Led Zeppelin's Presence (except much bigger)

Weather has been great so I've spent a lot of time in the Garden watching Carol work :-)

Been at a conference in Athens this week, must have put on 4kg's (haven't dared to look) due to the fabulous food in great locations (Overlooking the Acropolis, Along the Seafront at Sunset, in a private Baroque museum)......The conference was OK too.

Oh yeah, and my health. since finishing the Chemo, nothing worth mentioning except I'm having less seizures and less headaches. In fact pretty much less of everything.

Someday's I go without a thought for my little pest.

Current Music list (a bit eclectic this time):
Portishead 3 - Worth the 10 years wait (but I'd like the next one a little sooner)
Loads of 80's Indie (Cocteau Twins, Belly, Eels, Garbage.......)

And a couple from Finland with odd instrumentation:
Gjallarhorn - Ranarop (Folk)
Le Sega del Cantro - Das Kekkonen (Jazz/Folk Duo)

Chemo 6 - End of Primary Treatment

Started the last "official" Chemo cycle yesterday. So by Wednesday I have completed the state of the art primary treatment for a GBM tumour. So what next? Apparently, we wait and see.

In around 4 weeks time I'll go in for my next MRI scan and if not much has changed I'll be put on hold for 3 months. And what are we actually waiting for? For me to start feeling more external symptoms of the tumour, for my hazelnut size tumour to go to walnut size, for a new pea or two to appear. If I am lucky things will be the same as the last MRI. What we are not expecting is a complete recovery.

After all these months of being opened up, radiated and poisoned for the sake of this hazelnut it seems kind of odd to just stop especially when you see that the treatments have had some kind of visible effect. Why not just blast it to hell? but that's not the way it works with Cancer is it. Is this the lull before the storm.

Over the last few weeks I have noticed that my right foot doesn't lift as high as I want it to thus causing me to trip up steps more often than I used to, and while doing some gardening today I had to put in considerable effort to remain standing when my right foot involuntarily rolled sideways. Add to that my writing problems and an increased problem with finding words when I want them and you can see who is winning the battle at the moment regardless of how much improved the inside of my head looked at the end of February.

It is going to be very difficult just sitting and waiting.

Tutankhamun & the Sultan

The kids took Carol and I out on Friday as a birthday present to see the new Tutankhamen exhibition showing in Zurich. The centre pieces of the exhibition are simulations the graves as they had been found when originally opened Howard Carter. These were a quite interesting addition to the usual Tutankhamen exhibitions but overall the exhibition was rather small and not many original artifacts were on show, taking only just over an hour for a good look around.

The plus side was that we got to the after event restaurant earlier. The kids had chosen the Sultan, a Tunisian restaurant (couldn't find an ancient Egyptian close at hand) with excellent food (Mesa, couscous and other Tunisian specialities), authentic surroundings and friendly staff.

Thanks Amber, Kayleigh, Mario and Joss for a lovely evening evening out.

Thanks for a great 50th

Many thanks to everybody who came to my 50th Birthday event yesterday. I had a great time and I hope everybody else did to. Thanks for all the unexpected presents, and for knowing me too well.

Special thanks to Carol who spent best part of last week sorting the house out and cooking and then most most of yesterday making sure everybody was fed and watered. Love you.

There was a time last year when I was unsure if I would see my 50th. Now I'm looking towards a good few more.

Is it Crohn's or is it Crohn's?

Sorry about the gap, had a funny kind of week of ups and downs. Lots of work on which keeps my mind off bad things, but the truth is I been suffering a bit of a chill accompanied by annoying headaches but I think I'm pulling out.

But that hasn't been the main worry this week. Remember just before Christmas Amber was taken into hospital due to a bout of supposed colitis that for a while they thought was Crohn's disease, a chronic episodic (and incurable) form of inflammatory bowel disease.

Well a few weeks ago she started to suffer the same symptoms again, so she has been in hospital for more tests. The doctors decided today it really is Crohn's. We don't really know what that means yet, but she has an appointment next week to talk about therapies.

Sometimes I despair at the medical profession.

Birthday's for the boys

Many congratulations to Joss, my youngest, who is 17 today on the 17th.
Damn do they grow up fast!

Normally it is the only way to remember my birthday which is two days later (every year).
But this year people like to remind me its my 50th. Anyway I'll make them suffer this year by forcing to them come to my party.

Reliving My Life

I've been fully back to "normal" for a day now, much happiness.

Over the past couple of days I have had to re-live the last 8 Years of my life in order to write a letter to catch up with my old friend.

It is extraordinary how much I recalled in the space of only a few hours and how many many extreme emotions I relived over this time; happiness, pride, disappointment, surprise, wonder and sadness just to name but a few.

By the time I finished writing the letter, my mind was full with these renewed thoughts as if they had all just happened yesterday. So if I did this to cover the rest of my life, would this bring all my the memories to the fore? I think I might like that, even accounting for how the older memories will be a little harder to grab hold off.

If I am going to do this I think I need to do it soon because I'm finding that over the last few weeks it takes so much longer to write, not because I can't think of things to say, but I keep making mistakes as I write and the spell checker is working overtime due to repeated word sections and transliteration of letters. I guess I shouldn't be surprised, I always had a mild dyslexia and if the tumour's going to hit the areas of speech and writing this might could start to happen. But it could be I just need better reading glasses.

Feeling Miserable

After no Chemo side effects for three days, the old nausea came down hard. I've been trying to work to keep mind off it but I keep loosing concentration (Sorry to anybody reading documents from me the past few days).

Although I classify how I feel in the classic Chemo symptoms of nausea and tiredness, it really just extreme feeling of unwellness where doing nothing makes it worse, but doing something is just so difficult. Does that make sense? And the worst is my food tastes so bad on the odd occasion when when I want to eat it.

Oh well, I'm hoping tomorrow will be be better. And then only one more cycle (probably) before a "treatment" rest.

Earlier in the week I made contact with an old friend who I hadn't talked to in around seven years, during most of this time he has been suffering painful problems related to his liver on and off, but mostly on. He is now waiting for transplant with even more pain expected during recovery. The most amazing thing is during this time he has taken on working with kids at a a local zoo and wildlife park and became a samaritan finally becoming the chairman of the local samaritans. It puts my feeble problems into perspective.

MRI Pictures

Got the MRI CD, so here are the pictures from the scans of 25 February compared with 27th August. The left picture is from the end of August and the right one is from 25th February indicating (I think) a quite substantial volume loss.

The pictures below show how much other junk has formed (mainly due to the treatment). This can be any of fluid, scar tissue or necrosis. This picture also shows very clearly how much space there is around the Brain now due to reduce pressure in the cavity.















The last picture shows quite clearly my newly acquired dent complete with ingrowing bone. I certainly think this is my best side dont't you, handsome beast.



















So all in all, as I said before, good news. Makes all the Radiation and Chemo worth suffering. I started cycle 5 on Saturday, just the usual nausea and tiredness so far. Only one more to go and then we'll need to find out what to do next. I hope the doctors decide to give me a few months rest from treatment.

Thailand - Bangkok, Chiang Mai, & Rai

Bangkok reminds me of the city in Blade Runner with its 24 hours hour crowds, continuous music, talking billboards, dark alleyways, Pavement (Sidewalk) markets and endless traffic. This is obviously a city growing at a phenomenal rate, and we were lucky to have a native Friend to show us around. Crossing the road in Bangkok is a whole new experience, and it is often safer to take a Tuk-Tuk, but if you are looking for a Wat (temples), you are bound to find one without crossing a major road.
To those of you who think of Bangkok as the Sex city, you will be surprised to find that activity concentrated around just a couple of streets (Patpong I & II) and even then it has to share with a Night Market. So here are some pictures:

Bangkok Chinatown, Haggling over veg; Carol & Tam looking across the Chao Phraya to the royal palace

Climbing to Indra's weapon at Wat Arun, Across the Chao Phraya from Wat Arun. Bangkok downtown roofs

Wat Suan Phan - Carp Pool, Khymer Singa at Jim Thompson's House

After 4 days in Bangkok we flew to Chiang Mia, the second city in the North of Thailand. Although still a busy city there was some breathing space, but that is not why we are here......

Firemen on alert after our plane starting pouring fuel all over the runway, Wat Doi Suthep, Cobra at snake show

Elephant Ride, Orchid Farm, Buddha at Wat Phra Sing

Pung Tao Gong Temple Pagoda & Door detail








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Hill Tribes - Meo children playing, Paduang ringed women

Along the Mae Kok River

E-Haw Tribe







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Carol and our guide, A View to Burma, The Golden Triangle

Wat Phra Keo (Original home of the Emerald Buddha)

The food was better than expected









It's 7 days after leaving Bangkok, and after some Cabbage we fly back from Chang Rai having explored the most northern parts of Thailand. This has been a great fun and enligtening week.


Our final 5 days around Bangkok in pictures are covered in a later post.