Seeing the World

The iPad and charger are the last thing I throw in my hand luggage.  Not because they’re the least important.  Quite the opposite.  It’s because it’s the last thing I use at home and also needs to be first out at the airport to join the clear bag in the security bucket away from my main bag.

The Americans and the Brits have already banned iPads from the cabins on flights to or from places like Egypt and Syria.  Not a problem as I’ve no plans to visit.  But there is pressure being applied from across the Atlantic to extend the iPad ban to further countries including the EU.

This is a tad bothersome.  The iPad is my go to “bored on a flight” toy.  I can play music.  Stick Cricket.  Some diamondy tetrissy type game.  Even download videos pre-flight.  If they ban the iPad this is taken away from me and I’ll cry!

Yes, I could put music on the phone, but don’t want to.  I refuse to play games on the phone as it’s too fiddly.  And video on the screen is too small.

OK so I could bring the ancient iPod out of the car.  Even use one of those book things that used to be popular.  But the iPad is also the centrepiece of my evening entertainment.  I watch Netflix, not foreign telly.  I can write blogs on the iPad, not on the phone.

It’s not the end of the world for a flight where the iPad is allowed in the hold luggage.    But the 13 hour haul from Madrid to Chile will be less fun.  Not to mention Australia.

And what if I’m on a hand luggage only trip in Europe and they introduce the iPad ban when I’m oversees?  That’s an iPad cold turkey proposition that has me quivering with fear!  Will I ever get it back?

Netherlands Just Ain’t What it Used to Be

I’ve not seen a pair of cloggs since I got here.  One windmill and that’s it.  No obvious sign of people high on drugs and no semi naked prostitutes adorning the shop windows.

My meals out have been a little pricey, especially compared to my Eastern Europe jaunts, and modern Eindhoven is a bit like Preston.  Unexciting with a bit of football heritage.

But the people are chilled.  And feel almost British without being quite so serious.  Indeed, a good proportion of conversations between locals appear to be held in English.  Amsterdam is impressive and so is Utrecht.  I’m lucky that somebody else’s misfortune gave me a chance to see the latter.  It’s probably worth more than the couple of hours it got from me.

Next stop is Boston and New England in three weeks.  Tomorrow I get a head scan to help with the deaf right ear and the evil palsy.

Trying to Work Out What Einhoven Is

I chose Eindhoven as a cheap way to get to Amsterdam.  Flights were cheaper for my dates.  Hotel was good value compared to the capital and the €39 return train fare still kept my costs low and the kids’ inheritance high, while allowing me eighty minutes to admire fields and canals from the train.  Twice.

And after the excitement of Amsterdam yesterday, together with an unscheduled look around Utrecht, today’s job has been to suss out Eindhoven.

My hotel is set in a square, perhaps THE square which quite cleverly has the feel of many ancient European market towns.  I say clever because it’s a square surrounded by dull modern buildings with modern shops and yet somehow has a feel of rustic pleasantry.

The reality Is that it isn’t a very exciting place.  It’s pleasant and has a big church, but you could say that about much of Europe.  The buildings are depressingly square.  Efficient use of space, but uninteresting.  The 1960s to 1980s have a lot to answer for.

Although I think it’s the Brits who bombed the place to smithereens during the Second World War as the occupying Germans were churning out nasty things from the town’s Philips factory.  So maybe I should feel grateful for the warm welcome I seem to get everywhere.

I’ve had one of my gentle stroll days.  Over to the impressive football stadium, home of PSV Eindhoven, to buy Chris a classy scarf.  I love to wander round football grounds on non-matchdays and imagine what it will be like when it’s busy.  The stadium is only a few minutes walk from station and town centre too, so might be an option for an ad-hoc overseas football match at some point.

A bit of street food.  A stare at the church which was rebuilt in 1867 and has 1,000 skeletons underneath it that were discovered a few years ago.  A “large” beer which was typical chilled Euro-gas in a half litre glass costing more than it should and then a rest.

Theres nothing wrong with Eindhoven.  It has served a purpose.  It’s just not very interesting.

The Side Effects Are Back – That Triggers a Shift From Paranoia B to Paranoia C

This terminal diagnosis lark messes with your mind.  I negotiated the “oh my god I’m going to die” stage fairly quickly and, I think, fairly well.  After all, it was always going to happen at some stage.  Indeed, BBC2 at 9pm on Wednesday has a programme about a dozen people in a similar situation to me.  I think the phrase “It’s a live sentence, not a death sentence” is used.  Yes, I get that.

But that doesn’t stop you thinking about it.  I heard once that men think about sex seven times an hour.  I think about having a terminal illness more often than that.  Hey, the sex thoughts are still there too!  I rarely think about death itself or the painful drugged up bit before it comes though.  But I am thinking about the now and the next.

I’ve written often about current and possible future treatments.  And it’s more than possible that my mind plays tricks with how I’m feeling.  My paranoias!  That’s not to say I’m running around like a madman screaming.  But niggling worries do need to be self-managed to ensure I don’t become a pointless wreck of a human being.

Paranoia A is “how long will the afatinib work for?  And will I be able to move onto osimertinib afterwards or will that be the end of my effective treatment?”.  It’s the mild one that’s always there and remains.  Average survival is 32 months from last December with the drug.  But I’ve read about a bloke who came off it after six months.  He didn’t post online much longer after that.  I’m six months in.  There must be a crowd who are well over 32 months to make the average what it is.  But I haven’t found references to them.

Paranoia B is “Things are changing with how I feel, is this the end of my afatinib treatment?”.  My side effects of spots and diarrhoea eased quite impressively a few weeks back.  You’d think that’s a good thing.  But it could also be that the effectiveness of the drug is now less.  So it’s a bad thing.  And that one tumour I reckon I can feel seems to be hurting more.  Or am I imagining it hurts more?  Or is it actually bone regrowth rather than a tumour?  And does it only hurt after I’ve been energetic?  And if the drug is less effective and the tumour is growing again then that’s the end of the afatinib treatment.

You get the contradictions in your head.  But the monthly X-Ray and quarterly scan should be what triggers the truth.  How I feel might not be how I am.  The mental games don’t necessarily match the truth.

Paranoia C is where I am today.  The side effects are back and have been for a few days.  That’s good then, isn’t it?  Well maybe.  But what if the drug is now working harder because the cancer is working harder?  Does that mean that defeat is just around the corner?  And what if that interferes with the Boston and Chile trips?  That would be a travesty!  My face is a greased up zit machine right now.

C is the tough one because I know I’m playing contradictory mind games with myself.  It isn’t particularly helpful or constructive because, after all, what will be will be.

I’d rather just be thinking about sex!

I’m also quite happy with my “now” in life.  The trips are great.  The planned trips are great.  I’ve got a social life of sorts and the football season ended well.  It’s good and despite knowing it will, I don’t want it to change.

Eindhoven, Amsterdam and the Corpse

The most frustrating airport departure experience since I began this chapter of my life. Manchester terminal 3. Big security queue. Heaving lounge (although the meat pie and millionaire slice helped ease the pain) and a delayed Ryanair 737. Albeit only a half hour frustration.

For the first time I experienced the “we’re putting your hand luggage in the hold”. Fortunately the Ryanair Gestapo started the process with the people immediately behind me at the gate. Note made to be earlier to check in gates with these guys. At least I already keep my Afatinib and passport in my pocket so if I do cop for it I’ll just grab the iPad and let them do their worst.

Landing was fun. A huge queue for passport control.  Questions.  Nervousness.  “Where are you visiting?” – “Eindhoven. <pause slightly too long> And Amsterdam.” – “Business or pleasure?” – “Business. <why did I say that?> No, pleasure.” – surprised they let me in!

€3.75 for a bus ticket. The web site said it was €2.20. The machines all rejected my plethora of credit cards. I had to use the radical concept of paying cash on the bus.

Checked into the hotel. Lovely room. No working wifi. Went out to McDonalds for wifi. System down. Bought milk for the sole tea bag in my room. Had a bath. Slept.

I’d rejected breakfast at the hotel on cost grounds and, after negotiating the train ticket machine, zapped the card on the barriers and grabbed something resembling a bacon sandwich, a coffee and an orange juice for a respectable €3.

Another double decker train arrived, just as I’d experience in Bratislava, and I clambered up the stairway to find ordinary people in ordinary seats in a full carriage.  Eighty minutes later, witnessing only a single windmill, we arrived in Amsterdam Central.

Being totally unprepared I exited the station on the wrong side.  Google maps looped me round to Anne Frank’s house where I looked at the queue, took a picture and moved on.  Strangely enough my random walk brought me back to the station some time later.

It was a walk that made me see the city for what it is.  Ljubljana on crack.  It has the water and the bars and even some of the architecture of the Slovenian capital but it’s massive by comparison.  And the cyclists, mopeds, cars and trams mean you have to have your wits about you.  I’m beginning to understand that however nice a city is, if it’s too big or busy I’m not going to get the same buzz out of it that the USA South West national parks give me.  Or Ljubljana, which is exquisite.

I had a Dutch pancake, which tasted suspiciously like every pancake I’ve ever made and then handed over €11 for an hour on a boat.  It was interesting enough with recorded location information in four languages.  The city is very, very nice.  But for me a day is enough.  Been there, done that and my back hurts!

The train journey home was a disaster.  For some reason the service terminated at Utrecht.  It took 45 minutes to discover that a train had argued with a person and services were cancelled for hours on the line.

I grabbed the opportunity to see Utrecht, muttering about the inconsiderate person who was, by now, presumably an ex-person.  It’s a lovely place.  Canals, churches, bars clinging onto the banks of the waterway and a fabulous square that reminded me of a mini Kraków.  But feckin bikes everywhere!

Food and drink and back to the station to discover trains were running again.  The Netherlands is very flat.  As scenery goes there are fields and canals and little else.  The Amsterdam to Eindhoven line runs through something like Lincolnshire.  Nice enough, but not all that interesting.

Its been a tiring couple of days.  I might take a travel timeout between this trip and Boston.

How the Drive For Profit Might Save Me

It’s a difficult circle to square.  Drug companies tend to make lots of money.  They tend to charge patients lots of money for drugs.  My afatinib retail at $7,500 for four weeks supply in the USA.  The NHS get them for less than half that price.  But I’m currently costing the British taxpayer around £30,000 a year to keep alive.

That isn’t likely to keep me going beyond 2019 though.  I will, most likely, need something new before then.  One option could be osimertinib, although that, if usable, doesn’t even buy a full year.

Perhaps AstraZeneca and their new immunotherapy drug imfinzi will help keep me going.  It’s about to drive £1.5bn-£3.5bn of income for its makers and they rocked the FTSE with a big share price increase on Friday.

That’s an obscene amount to charge for keeping lots of people alive.  I say that without having a clue how much they’ve spent developing it.  I read that the competition is two years behind them.  So obscene or not the market leaders are more than welcome to test their treatment on me before my time comes because their slack competitors aren’t working fast enough to keep me alive.

There’s then a thought for the placebo tester.  A group of people who have, without realising, been killed by a drug trial because they weren’t given the active pill.  They were randomly chosen to prove that the drug worked without getting the benefits of actually consuming it.  If I do ever end up on a drug trial I do hope I’m on the bit after they’ve completed the “randomised” research.

The other problem with the new imfinzi drug is that it’s only been tested on stage 3 cancer patients from what I can see.  Those who’s cancer has spread only locally to the lung.  My body is riddled with tumours miles away from the start point.  I’m stage 4.  I’m no expert on the difference but the life expectancy numbers are pretty similar.  Weirdly the upper range of five year survival rates is marginally better for stage 4 than stage 3.

Hopefully imfinzi will succeed at beating both stages.  Hopefully, when needed, the medics will have a crack at using it on me.  Because I don’t think I’ll be here long enough for something else to get tested to the point of being openly available to treat me.

Long live private enterprise!  Here’s the imfinzi info.

Meet Me Then Eat Me

The end of the football season is a difficult time. What to do with Chris on a Saturday.

No football. No cricket. No desire on my part to sit in a pub. Then a moment of genius. Lancashire’s Wild Boar Farm.

Yes, it may be aimed at smaller kids than us, but we both like animals and the idea of feeding them in the sun proved a winner.

It took some time to find the boar, despite the “Meet me then eat me” proposition of the place. Wallabies, sheep, goats, deer, lamas and the other one that you always think is a lama were first in line, eating pellets from our hands and looking generally cute.

Further walking then we found the boar. Loads of them. Timid, uninteresting and uninterested. So then to the highlight of the trip. Wild boar sausages, egg and chips for £5.95.

Into the cafe and … They’d stopped serving food for the day. Gutted!

Feeling the Need to Say I Never Smoked

This one is on me.  It’s my cancer snob value.  It’s very wrong of me but it is a thought I had instantly on diagnosis.  It’s a thought that evolved in the weeks immediately after diagnosis.

I have never smoked.  Unless you count three or four on the upper deck of a bus from Heald Green to Stockport as a teenager.  And I’m not sure I even inhaled.  My dad shared his smoke with me daily for eighteen years.  He’s still going at 81.  My ex-wife took up smoking after years of marriage, but the fumes rarely got near me.

My cancer isn’t caused by smoking or passive smoking.  And I’ve felt the need to state that openly from the start.  My mind is saying “my lung cancer is crueller because it’s nothing to do with cigarettes”.   That’s a pretty shitty thought to have because nicotine is just about the most addictive drug known to man.  Kicking the habit is hellishly tough.  Smoker or not, nobody deserves cancer.

Yet it’s one of the ways I’ve fronted up to people.  “I’ve never smoked” tends to be a proactive first paragraph statement.  Maybe it’s because I know it’s a question I’d have asked somebody in the same position that I’m in.  Somewhat ignorant as it would be like saying “I’m a detective and I’ve just worked out it’s your own fault you’re ill, dying”.  Even though the smoker could be suffering from the same non-smoker lung cancer that I have.

And as I walk past smokers I cringe.  Hold my breath.  Fear a second of their fumes will somehow make my condition worse.  Even though I know it won’t.  I want to lecture them on their stupidity.  Even though I’m a dead man walking at 49 and they might live for decades more than me.

Perhaps my lung cancer should be called something different.  It’s treated differently to smoker enhanced lung cancer.  That treatment might buy me an extra few months.

Yes.  It pisses me off that I got this disease without smoking.  It pisses me off that I think other people might think I got it because I smoked.  It pisses me off that somehow in my own mind I’ve got a superior feeling over those who get the same illness but were hooked on the evil weed.  We all end up equally dead at the end of it.

An Update on my Permanent Health Insurance Claim

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