Seeing the World

This time a year ago I was on leg two of my world tour.  Malta had started my “I’m going to die let’s see the planet” tour.  Bratislava was then my home for a few nights.

A year on, and it’s a trip to Calderdale hospital to give a blood sample, be annoyed at the lack of disabled parking spaces and be very kindly offered a seat by a chap of a similar age who worked for Halfords.  I took it.

The disabled parking frustration was interesting.  I seem to recall being thoroughly pissed off by car parks with numerous empty disabled spaces and no normal availability.  How times have changed.  Seeing things from the point of view of the partially disabled is certainly eye opening.  Railings on the wall in Calderdale hospital are a major benefit to me with my walking stick.  So few buildings offer such welcome support.

Bratislava was chosen as a destination for a handful of reasons.  Cheap flights from Leeds.  An apartment in the centre for £40 a night.  A vague fascination with Eastern Europe, not that Slovakia is that far east.  And a scene in the James Bond film The Living Daylights, which I subsequently discovered had been filmed in Vienna!

I walked for miles.  Saw most of the city on foot.  Climbed hills up to the Castle.  Ate street food and pondered the fall of communism and how this city appeared to have thrived.

And identifying my excellent mobility of just a year ago made me sad.  My lung cancer hasn’t given me a cough yet.  It’s just attacked my bones.  And somewhere between then and now that mobility has declined dramatically.  To the point where, on Saturday, Chris started a conversation about wheelchairs.  I’m not ready for that.  But I wasn’t ready for the walking stick I now rely on.  It might yet become an idea I have to get used to.

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There are moments in life that stand out.  Shared with friends and family, important to you when they perhaps mean little to others.

Five years and three weeks ago the not so mighty Oldham beat five times champions of Europe Liverpool 3-2.  A guy called Matt Smith, who seemed like he couldn’t hit a barn door during most of his career at Boundary Park scored twice.  Chris was ball boy.  Matt and friends joined me behind the goal.  As we exited the stadium in a state of shocked disbelief the news came through of the draw for the next round.  Everton at home in the fifth round.  Wow.

It was a poignant day.  We’d lost a close family friend, Tricia, that morning.  Lung cancer as a coincidence.  It felt like she’d departed to organise some happiness on a day that had started desperately sadly.

Then, three weeks later, five years ago today came that moment.  Whereas beating Liverpool was a wonderful achievement, Oldham were never behind in that game.  There was tension as they clung on.  Humour in the dying moments as Chris recovered the ball for a Liverpool corner and “accidentally” rolled it between Suarez and an agitated Shelvey as the clock ticked down.  But while the goals caused excitement and the final whistle joyous relief, the Everton game brought a single exhilarating moment that stands out.

Oldham had taken the lead but Everton entered injury time 2-1 ahead.  Corners for Oldham.  Fourth and final minute of injury time.  The Oldham goalkeeper runs the length of the pitch, joining the crowd of players in the Everton penalty area, causing mayhem as the ball swings towards the six yard box.  Through a crowd of players came the now legendary Smith.  Six foot six inches of power headed the ball goalwards.  And in.  The stadium erupted.  The final whistle blew.  2-2 final score.  A money spinning replay on Merseyside.  But just to be part of that moment of the ball hitting the net was an extraordinary feeling.

Fans remained in the stadium celebrating a draw as if they’d won the trophy for fifteen minutes after the game.  Smith did a solo lap of honour.  And when anybody asks “why do you watch that shit?” there’s a simple answer.  Moments like that.

Time flies.  Circumstances change.  But memories matter.

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Today is my low point on the U shaped chart between chemotherapy sessions.  Well, tomorrow is actually, but the phlebotomy units don’t open at weekends so they’re pretending today is the day I have to give a blood test.

I assume they take a “low point” reading at this stage to measure how I’m holding up to treatment.  A hell of a lot better than the first couple of days when you combined chemo and radiotherapy to space me out without warning me of the delirium it causes.

I do have a plan to sneak in a Wetherspoons breakfast.  Naughty, I know, but for some reason I don’t think Tuesday night fulfilled my pancake requirements.  I’ve given up getting drunk for Lent, mainly due to never usually getting drunk anyway.  So pancakes and coffee it is.  Probably before the blood test too, just to add a few E numbers to the bloodstream for them to analyse.

I’ve pretty much packed my small bag for Anglesey.  My dressing gown will be my main item of clothing for the week and that’s already there along with my swim shorts.  So iPad, charger and drugs supply are the main additions needed.  I’ll combine with Rachel for food shopping, probably en route, and make sure the supplies can see me through the week.  I’m not leaving the hut until I have to.  (It’s more a fully fledged all mod-cons bungalow, but I’m trying to make it sound rustic).

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The picture represents the location most of my childhood holidays took place at.  It’s also where the ashes of my mother, grandmother and uncle were spread between 2006 and 2008.  Saunton Sands in Devon.

It’s where I’d like to end up.  And the request has been made to my sister to fulfil that.   And while I’m not hoping to head back there soon, there are stark realities staring at me.

When I was initially diagnosed with lung cancer I googled survival rates.  Writing a post-divorce will became important.  3-6 months after diagnosis is the standard time to death.

Fortunately the targeted therapies of afatinib and osimertinib for non-smoker genetic failings kept me going.  My bones were strong until the afatinib failed.  Perhaps Oncobabe was slow accepting my claims that I thought my butt tumour was back.  Without those drugs I’d have been dead last Spring.  Even with them my pelvis is battered along with my hips.

And what happens when the chemo stops in March or April?  Do my 3-6 months start again?  The less favourable numbers don’t expect me to see much of the next football season.  But a percentage of us get to five years.  It’s a low percentage, but it’s a real number and real hope.  Time perhaps to be accepted for a drug trial.  Time perhaps to give my new love for life some longevity.

And there you see where lung cancer has its problem.  There just aren’t many victims left to front campaigns.  It’s a tough nut to crack.  There are no Kylie Minogue type survivors because they simply don’t survive.

I’ve enjoyed watching the fund raising total increase yesterday and today.  Admired the £200 anonymous donation.  Thank you.  Appreciated the tenner from a bloke I know has donated to two other Roy Castle collections I’ve linked to over the last year.    Been astounded and humbled to see the notional target met and then thrashed within a day.

It’s an unpleasant reality.  But I suspect in both November 2016 and September 2017 I was weeks from death.  I can’t count on making it through the year, despite my best intentions.

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One discussion I had with my hearing specialist on Monday was about my facial palsy, aged sixteen and a bit months.

I asked if it was Horners Syndrome rather than Bell’s Palsy.  He was quick to discount my thoughts, highlighting that while Horners affects some lung cancer patients I don’t share the eye dilation issue that comes with it.

Then in an off-handed way he said that patients who’ve had facial palsy for more than six months are usually stuck with it.  I don’t think he used the word “stuck” but there is probably no better was to describe the right side of my face.

It was a blunt statement.  My own online reading had suggested it will just go away on its own.  But there are definitely cases when people have had this curse for several years.  I’d quite like to shake it off before the cancer gets me.  I probably won’t.  Another hard truth to deal with.

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While my exotic trips of last summer were special, sometimes a return to the simple pleasures can be fun.  Not to mention medically advised.  A search of property with exclusive hot tub revealed nothing available in The Dales, so a freebie on my sister has been taken advantage of.

Saturday sees a return to Anglesey.  Rachel will join me for three days of fun and frolics before I drop her at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch station to catch a train home.  A few solo days of hot tub heaven will follow.  Key decisions about milk, bacon, egg and butter supplies to see me through to Thursday will be made.  Then I’ll simply wander between bed, kitchen, lounge and hot tub ignoring the rest of the world, perhaps keeping an eye open for red squirrels.  Having noted the nearest A&E department just in case I get any chemo side effects.

It does involve a no Chris weekend which is always tough.  Oldham’s game at Rochdale is off due to Dale somehow reaching the fifth round of the FA Cup despite having the worst football pitch ever seen.

It will be an interesting routine change for me.  My sister’s lodge offers real privacy and solitude.  I’m usually done after three nights solo.  But I think two nights of company and four nights of solitude will work.  And I can always cut it short if needed.

There is a slight question mark over my ability to drive home solo.  The chemotherapy chart suggests I’ll be near my low point.  But there are hotels en route and it is only three hours on moderately busy roads.

Thanks to those who donated to Roy Castle Lung Cancer Foundation in my name.  An amazing response from friends, family, former colleagues, former colleagues who I’ve possibly never spoken to but been aware of, and other complete strangers who’ve picked up on my blog and followed my story.  In a day you’ve probably raised enough to fund a researcher for a week.  It’s overwhelming.

If anybody would like to add to the collection bowl there’s a link below.  No obligation, although anything in the next few hours might help me to hit my notional target within 24 hours of putting the site online.

I feel genuinely humbled.  You’ve already raised more in a few hours than the average amount of research money per lung cancer death figure published earlier this week.

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My walking is inhibited.  I can’t run.  Marathons and mountain climbing aren’t going to happen.  But the BBC story on how poorly cancer research money is allocated to the biggest cancer killer has led me to ask for voluntary donations from anybody reading the blog.

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There is no obligation.  You may have charities that are closer to home.  You may lack resource and that’s fine.  But if you can, even if it’s only a fiver, please donate.  And feel free to donate again on pay day.  And the following pay day.

In return I’ll commit to maintaining the blog as long as my health allows.  That’s the good, the bad and maybe the painfully sad that awaits me in what’s left of my life.

I still have hope of new treatments.  Matrix Trials.  Christie Hospital trials.  Miracle.  The reality is that I’m running out of treatments at an alarming rate.

Money raised will go to the Roy Castle Lung Foundation.  It’s not to pay for my treatment for me.  It’s to pay for research and a future where lung cancer will be beaten.

Did Poor Budget Allocation Leave Me to Certain Death?

It would be hard for me to argue that research on one type of cancer should be reduced to free up funds for another.

I’m no expert on how such decisions are made.  Perhaps somewhere experts sit in a room making these big decisions based on potential breakthroughs.

But as I sit and stare at the numbers above I’m bewildered by things.  The biggest killer gets least research money.  The killer that crosses the sexes gets least research money.  The killer that will kill me gets least research money.

And it’s not as if the numbers are close.  The gap per death is staggeringly huge.  Granted, lung cancer is a sod to shift.  But it’s almost like nobody’s trying.  And for the first time I’m really angry.

I don’t really know how health experts, politicians or anybody can remotely justify the discrepancy.  Fight your biggest killer the hardest.  You might save more lives that way.

There’s Still a Shock I’m Here as a non-Smoker