Seeing the World

Since I came to terms with the concept of having terminal cancer my main distraction from facing into reality has been booking trips.  And making trips.

My only overseas journey left is Australia.  And that’s at severe risk.  And that risk is stopping me booking other trips involving flights.

Granted, I’ve been able to do a couple of pyjama days where tumour pain was extreme.  Getting to Anglesey was a good escape, even if I did face into my realities a bit while there.  And normal Saturday’s with Chris being restored as I return from travels is good news.

Football dominates and has led to a first class booking for next Saturday.  My disabled railcard kindly knocking a third off the first class fare from Manchester to Bletchley.  First class, because I can and because it only adds £8 each to each leg of the trip.

Bletchley being somewhere close to Stadium MK, hone of the team that shouldn’t really exist, MK Dons.  Hopefully our record of been twice, lost twice will be improved.

I’m also trying to keep myself social.  Lunch dates with numerous former friends and colleagues. I’ll get over to see my Dad, possibly this week.  And I need to organise a trip to Wiltshire to feed some tigers.

Whatever my flying limitations, it does seem I can create enough things to do without straining myself too much and deflecting my thoughts away from excessive focus on silly little things like not being alive.

A morphine tablet seems to have minimised last night’s thigh pain too.  I’ll try without tonight to see if there’s any improvement.

The Thigh at Night

I am awake in the early hours for the second night running.  Because my thigh hurts.  Tonight is a little worse than it was last night.

Paracetamol and ibuprofen have made no difference.  Sleep would be appreciated but this discomfort is making that difficult.  It doesn’t feel the same as my last tumour, recently zapped by osimertinib.  But it’s fairly close to the area that tumour made home.

Which raises the question.  What is causing my pain?

Fear would say new tumours.  The fact the most recent incumbent stopped hurting a week ago suggests to my untrained mind that it isn’t to blame.  Unlikely to be happening.  But the fact it’s pain that’s most extreme at night mirrors the cancer pains of old.

Layman biology thinks I’ll have gaps where the tumour was, combined with tissue damage to bones, muscle and nerves.  I never studied biology to a qualification though.  So what would I know?  Would that hurt?

Targeted google searches throw up a theory that the tumour itself, having been successfully zapped, is now decaying.  That decay is being targeted by my body slowly cleaning itself and that is what’s causing my discomfort.

I might throw a couple of my remaining tramadol down my throat.  Perhaps washed down with a tea spoon of liquid morphine for a quick hit pain relief.

Theres nothing agonising going on. But I really want to sleep.  A few good nights have suddenly stalled.

At least I still have my movements back.

The Love For a Dutchman Called Queensy

It has bee the first normal Saturday in ages.  Normal being drive, Chris, Wetherspoons breakfast, football, Toby Carvery, home.

The breakfast had an irritation.  Refillable coffee was now behind the bar so I had to ask bar staff for the caffeine top up.  Negative points for Wetherspoons.

The evening saw Toby’s exciting new service.  Settle your bill on your phone.  One of my irritations with the place is the hours I’ve sat there waiting for a bill.  Now I can pay and go.  Irritatingly, despite being part of the Toby app the system doesn’t award me an online loyalty sticker.

The day’s excitement sat between these two events.

On a day when Liverpool and Manchester United bored the world to death, another Lancashire derby was taking place.  Oldham Athletic v Blackburn Rovers.

Decades ago this was a grudge match.  Numerous late middle aged men snarling their dislike of the opposition in memory of days gone.

While I was busy in Souh West USA strange things had been happening in Oldham.  Changes in manager.  Half the team were new to me.  They also managed to win three games in a row.  Unheard of.

I was hoping for a shed full of goals.  They didn’t come.  89 minutes of nice football from the home side, vicious fouling from Blackburn.  And then it happened.

A challenge won in midfield.  Oldham player gets beyond the last defender.  Usual script is to shoot lamely wide or get tackled too easily by an opposing defender.  But this lad shaped to shoot and actually looked like he believed he’d score.

The ball rolled slowly past the keeper.  It hit the net and the home fans roared in a way I’ve not heard at Boundary Park since an FA Cup equaliser against Everton nearly five years back.

The scorer, once on the books of Ajax, Queensy Menig.  Today’s recipient of man love in Oldham as Latics held on to win for the fourth time in a row.

And, for a time, I could forget about cancer.  Australia.  Pain.

The Things You Take For Granted

The good news is my latest miracle drug is still working.  Any thoughts that I can still feel my pelvic tumour are just about gone.  Although I do still scratch my back where it used to tickle me.

That’s not to say it’s all plain sailing.  My right leg is stronger and moving freely, but still has a sense of pins and needles in it.  Whether the shrunken tumour is still pressing against the nerve or whether the nerve remains crushed in some way I don’t know.  But while it’s better, it’s not completely right.

There have also been sporadic pains in the leg where I imagine there’s been tissue damage caused by the tumour.  Fact or psycho-semantic impact?  I haven’t got a clue and a scan is a long way off.  I have popped a couple of paracetamol at times.  But none of the serious pain relievers.

I’ve not taken on any walks beyond the stairs at home and getting to the hot tub in Anglesey.  Tomorrow sees a return to watching football and I might cover a few extra yards between parking and seat than I’ve challenged myself to since the drug came.

I will ask more about my physical limitations on Tuesday when I visit the hospital for some bone strengthening medicine to be pumped into me.  Oncobabe’s talk of broken leg risk has me behaving cautiously.  Or lazily.

In summary though, the improvements across the first four days of osimertinib were dramatic.  Days five to eleven have me unaware of any changes.

100,000 Avios and Can’t Fly!

Last night I hit 100,000 Avios.  Again.  Not bad having run down my stash to zero to fly first class to Boston in June.

Perhaps less exciting when your medics aren’t keen for you to fly anywhere.

Irritating when the most cost effective use of Avios is long haul business class flying. While I could cash in the points and overload myself with dozens of bottles of wine, stay in a few hotel rooms or hire a couple of cars, Avios are best value for flying posh.  And, at least for now, I’m not allowed.

100,000 will get me a return fare from the UK to New York alone.  As long as I throw in over £500 in “taxes” to BA.  Or I could transfer my BA Avios to Iberia Avios.  And fly from Madrid to New York for 64,000 Avios plus just £175 in “taxes”.  Plus a flight to Madrid of course.

It’s not that I have a compelling desire to see New York again.  I’m just trying to explain the value of what I can’t use.  Hopefully I will fly again and burn these points on something productive.  The Iberia trick to save points and cash, if not time, is one that others should note.

I don’t think I could bear to wastefully spend these points on poor value ancillary purchases.  If my health declines before I spend them the plan is to create a family account with Chris and give him some opportunities.  While officially the points cease when I do, if they’re attached to a family account and nobody tells the Avios people I’m a goner Chris can continue to spend them.

I’ll have to ensure I train him well in the dark arts of Avios accrual and redemption.  It’s a game I enjoy.  Even if I might not get a decent use of my current stash for myself.

Am I Facing a Flight Ban?

The conversation with Oncobabe only went as far as Australia.  Other destinations weren’t discussed.  But her message was clear – I’m not going to Australia.

The door may have been left slightly open, the final discussion is just over two weeks off, but the idea of flying, suffering low white blood cell count, developing an infection and needing a rapid application of IV antibiotics several hours before landing wasn’t something she favoured.

As I pick through my itiniary, ensuring I can get some money back from bookings made in January, it crosses my mind that this new osimertinib drug is effectively a flight ban.  Now granted, cars and tunnels open up opportunities.  Cruise ships have medical facilities.  “Travel in hope” doesn’t close down because of this.

So I do need more clarity from Oncobabe as to the limits of travel.  And I’m assuming she can’t actually ban me from doing anything.

30th October will be an interesting discussion.  “I’m going to Australia and need two months of osimertinib” might yet be met by a “well you can only have one”.  That’s me snookered.  Or murdered!

It seems I have a 30% chance of low white blood cell count.  And presumably that’s not a guarantee of infection.  Although planes and their air conditioning might not be the best way to avoid a problem.

I’m balancing up a 30% risk of something nasty happening, which is probably lower in truth, against obtaining a dream that the credit crunch pinched by screwing the values of my 2008 share options.

Now if it was 30% v guaranteed death in a few months anyway I’d probably take the risk.  Finland takes EHIC.  Australia has a reciprocal medical arrangement with the NHS.  Qatar have doctors and billing systems.

But the conundrum in my head is around developing treatments.  This morning I’ve read about a trial of five new drugs that can further extend life.  Osimertinib trials recorded 2% of patients tumour free after a year – no idea what’s happened to them since.  Small numbers, but they could be me.  Other treatments and breakthroughs could be around the corner.  No point being dead before accessing them!

The last few years have seen so many lung cancer breakthroughs and it seems that more are due.  Notwithstanding the rather unpleasant fact that 60% of those diagnosed at the same time I was are no longer with us.

It’s a tough conundrum.  I don’t want to disrespect what is doubtless good medical advice.  I don’t want to leave my family the job of getting me back (dead or alive) from an overseas medical emergency.  But I’m looking at the 70% no risks statistic and thinking it’s one worth taking.  If I can take enough pills with me.

My mind isn’t made up one way or the other.

My Unexpected Emotional Outburst

December last year was tough.  The previous month had seen me diagnosed with certain death.  December had seen me start treatment with a miracle drug that should extend my life by a couple of years.  The TV screens were suddenly full of adverts for cancer charities.  I cried several times to myself.  For myself.  Watching an advert showing how sad a family is when someone dies of cancer ripped into me. I don’t want to cause them such pain.  But I know I will.

I don’t think I’ve cried since.  Until this morning.  A couple of unbelievably relaxing days split between hot tub, Jean Luc Picard and an occasional browse of the World Wide Web was coming to an end.

I’d turned the hot tub temperature down last night, realising that the Wednesday weather was going to be unkind.  No point taking a dip today!  It’s a couple of weeks before my sister returns with her family and I don’t think she’d appreciate paying to heat an unused pool to 38 Celsius for that time!

This morning I put things back as I found them.  Turned a few switches off and lowered the thermostat inside the cabin.  I gathered my things together and sat by the door, looking around.  Then it hit.

It probably only lasted thirty seconds, but a huge emotional wave hit me and I cried. Maybe I knew it was coming.  Maybe that’s why I’d taken myself to Anglesey.  But not a conscious decision.  I’ve found in the past that feeling sorry for yourself is rarely a good idea.  But while there was perhaps an element of grief to this moment I’m not sat here now feeling sorry for myself.

I’m not sure why it happened.  Or how long it’s been building up inside me.  Perhaps the change of medication is the key.  Much as the osimertinib has improved my condition and reduced my acne, the loss of afitinib was effectively the loss of two years of survival time.

I’m more than aware how averages work and always knew I might not hit average for afatinib.  But somehow the optimist in me had believed I’d outdo the average.  Have more time to enjoy the final go at life I’ve been offered.  Seek out new worlds.  Go where no man has gone before.  Or at least where I’ve not been before.

The moment has gone and I feel fine now.  I hope it takes its time returning.

A Day of Reflection