Seeing the World

As QANTAS tell me to head to gate 5 to catch my flight from Sydney to Brisbane for the first Ashes test, I lie in bed next to the moors north of Halifax pondering why I’m not getting that plane.

Eighteen months ago I was walking those moors daily.  Three times a day to be honest.  A three mile route each time taking in country roads, a lake and some fresh air.  I was a fit as I’ve ever been as an adult.  And proud of it.

Now I lie in bed frustrated by the effects of lung cancer.   At the end of March I can recall walking around another body of water in Slovenia, Lake Bled.  It took a couple of hours at a modest pace, but I managed it with relative ease.  June saw me fail to complete a forest trail in New England.  Early August and something happened in Chile that slowed me down considerably in Santiago.  September saw me struggle around South West America.  The big issue is non-small cell lung cancer.  The non-smoker variety.  It’s an interesting name because the tumours in the lung have remained just 2cm in size since they were first spotted.  It’s the blood stream taking the disease to my bones that has done the real damage.  And will kill me.

In June I realised that I’d exhausted the benefits of the afatinib wonder drug that had given me a new lease of life.  I could feel a tumour returning on my pelvis.  Come October and the oncologist eventually agreed with me, with the help of a scan, and I changed to a new wonder drug, osimertinib.

I got a quarter of the way to “average survival” with afatinib before it failed me.  I’m already close to a quarter of the way to that with the new drug.  There’s an instinctive fear that I won’t get to average again.

Last night at the football, a rare goalless draw, I parked up on yellow lines outside the ground and reluctantly took my walking stick in hand.  It’s likely that I don’t need it.  But as I crossed to road it’s obvious that I’m not going to jog quickly to the other side.  Chris protectively adjusts his route to position himself between me and any oncoming traffic.  I safely reach the pavement on the other side of the road.

Exiting the stadium is close to terrifying.  There are no handrails, just steps and crowds.   While my stick advertises frailty, Chris helpfully moves in behind me as I head up the stairs out of the ground, holding off the risk of somebody inadvertently knocking me over.  The whole area at the top of the right leg feels like it’s been plugged back into my body at some point and nerves, muscles and bones aren’t confortable.

It is one of the many reasons my oncologist has given to stop me fulfilling the trip of a lifetime to Australia.  Although she hasn’t shown me the CT scan that identified the return of my pelvic tumour, she has been consistent in warning me of the risk of falling over and breaking bones.  I definitely feel vulnerable and although I can’t see inside my right hip / buttock / leg area I can feel a mishmash of stuff going on in there making the leg weak.  Minor pains, pins and needles and general instability.  My plan to walk a mile from hotel to cricket ground tomorrow and on subsequent days was patently flawed.

That weak leg creates other issues.  Standing up can be hard work.  Granted, the osimertinib pills appear to have shrunk the nasty tumour that the afatinib eventually succumbed to.  But when I move from lying, to sitting, to standing I have to think about how to go about it.  Adjusting for that weakness.

Those adjustments often give me shoulder strains.  Those shoulder strains often make me think my cancer has spread again.  In reality the pain goes away within days.  But the simple act of standing up becomes even harder.  Combined with man-flu and a throaty cough and the simple act of sneezing or coughing causes quite severe pain, albeit for an instance, in the shoulder area.  Fortunately, at the time of writing, those shoulder pains have gone and so has the man flu!

Then there are the other ailments.  I feel like I can cope with cancer and its death sentence.  Other minor stuff is driving me nuts though.

Two big toes with ingrowing toenails.  I’m paying out £70 a month to get these managed by a podiatrist.  They are uncomfortable.  And risk an infection.  And with the cancer drug risking a low white blood cell count Oncobabe fears the open wounds on my toes will give rise to an infection that could easily beat the cancer to killing me.  Yesterday Mr Podiatrist gave me the good news that both toes are improving.  But I still need to bathe my feat daily in warm salted water and get somebody to bandage said toes when dry.  My landlord and girlfriend have generously saved me from the need to do this myself.  Putting my socks on strains my damaged back daily.  The dexterity needed to manage toe bandages feels beyond me.

I’ve been 90% deaf in my right ear since May.  An eye doctor linked this to my Bell’s palsy. For over a year I’ve “enjoyed” having a lopsided face, a diagonal smile and a right eye that won’t blink.  A year on and I’m more comfortable with the condition itself.  My eye doesn’t get as sore as it once did.  A bit of lubricant at night and taping the eyelid down while I sleep seems to have things under control.  While most recover from this in weeks, I now accept it won’t ever go away.

The eye doctor arranged for a scan, said something about facial nerves causing the palsy and also the deafness and that was that.  He never uttered the words “get yourself seen by an ENT specialist “.  So I went on holiday to New England, Chile and South West USA and forgot about things.  Accepting the partial deafness and waiting for the Bell’s palsy to go away.

Then a couple of weeks ago I became about 70% deaf in my left ear (my estimate).  I couldn’t hear the TV and required headphones to get any noise out of my iPad.  Suddenly I’m in a silent world.  A same day visit to my GP is organised and I get some interesting news.  Wax.  Take olive oil drops for a couple of weeks and return for syringing.

Now this raises another interesting question.  Granted, the left ear isn’t linked to the Bell’s palsy.  I’m confident that my syrunging session this lunch time will clear that.  But efforts on the right ear could potentially, unmask a misdiagnosis.  And I hope they do.

Is my near totally deaf right ear problem really caused by Bell’s palsy?  The eye doctor seemed convinced.  But he’s not an ENT specialist.  Is it possible that a mere practice nurse at my GP surgery can cure my right ear deafness today with a syringe?

I really hope it’s a yes.  But that will open up the question as to why I wasn’t referred back to my GP or onto ENT in the first place.  Six months of near total deafness in one ear that could have been avoided.

My oncologist hopes to be able to say I can fly again towards the end of January.  I think I’m ruling out long trips for now.  The spread of the cancer could restart at any time.  While I’m hoping for several years more, the statistics I’m reading continue to tell me to enjoy what time I’ve got left.  Which I intend to do.  But toes, ears and Halloween mask palsy face along with the occasional cold are really quite annoying!

Airlines Asking Me to Check-in

I seem to have adopted an 8pm to 3am sleeping pattern.  And seven hours is normally enough for me.  I open the window to let some air into my room.  Move easily downstairs to do what many middle aged men need to do in the middle of the night.  And then return to my room.

Despite the window being 6-8 feet from my bed the rain is reaching in.  That’s enough air for one night.  I update myself on the news, discovering Mrs Vardy has breast implants and Amir Khan is soft.  And then it happens.

British Airways invite me to check in for a QANTAS flight from Sydney to Brisbane.  Before I have a chance to excitedly check if I’m due a refund I’ve missed, QANTAS themselves send me an identical online check in push notification.

My instinctive reaction is amusement rather than frustration at not being there.  My experience of airlines and their relatively poor customer IT should have told me this was coming.  My booking has been cancelled.  I’ve checked on both web sites.  It’s just somehow between cancellation and check-in time these airlines don’t do anything to tell my app that I’m no longer flying.  Their web sites know.  But the apps are having a nap.

The weather forecast in Brisbane looks good.  Almost a shame as England nearly always lose there.  On the hills north of Halifax it’s hammering down.  If we were playing in Yorkshire it would be a nailed on draw in the first test.

Come and See What You Could Have Won

The classic Jim Bowen line at the end of Bullseye.  Where the contestant has gambled all and lost the chance to win a motorboat.  Probably a relief to them in truth.  They’re a bugger to park outside a terrace when you live two hours from the nearest sea.

At the moment, images of Australia keep appearing in front of me.  In part driven by my interest in the build up to The Ashes.  But I’m at Rachel’s and notice a stuffed Koala.  Finding Nemo appears on TV.  A character in Star Trek Voyager considers becoming a test pilot in Australia.

Of course, the plan was to be in Sydney today.  The start of a five stop tour around Oz.  I’m trying to work out how much not going has affected me.  I’m a little more morbid in thought.  But not depressed.  I’m still trying to decide if it was the right decision.  Oddly, having shredded big toes overseas would probably be more troublesome than anything cancer drug related.

Yet there’s little point reflecting on the decision to stay at home.  It was made for the right reasons.  And while I feel a little fitter overall than I did a few weeks ago I’m still not sure how I’d have handled the Aussie heat or the regular flights around the country with a 22kg case.

Regardless, I do keep reflecting.  Even if I’m not regretting.  And that is extraordinarily frustrating.

My “I’ve Died” Please Do This List

I’ve finally ended my procrastination on this.  I have the perfect opportunity to clearly signpost where everything is after I’m gone and highlight one or two minor wishes.  And I simply haven’t wanted to do any more than make a will until now.

Then, in the early hours of this morning I started drawing up some instructions for my sister to follow as and when the inevitable happens.

Where the will is.  Where the pension is held.  Who to contact to stop sending me money.  Who to contact to return the car to.

A suggestion to update my Facebook page with a final message and funeral details.  I think this probably removes the need for an obituary in the local rag.  Wise, as the local rag went busy.  Yes, I want “Stayin’ Alive” playing at the funeral!

A note on how to get my Avios inherited instead of cancelled.  It almost feels like that’s the most important thing!

Which keys live on my keyring.  That could get an interesting puzzle to unpick without me around.

Where I hold credit cards and bank accounts.  I must remember not to play the rate tart and introduce numerous new bank and building societies into my life!

There’s more detail to add.  Phone numbers to dig out.  Topcashback account to empty!

It’s morbid.  But the least I can do for those I leave behind is to make winding up my affairs fairly straight forwards.

A Quick End

I am quite keen on the idea of a quick ending.  Just not yet.  The idea of spending months in pain more serious than I’ve experienced so far doesn’t appeal.  Admit me to hospital.  Give me time to say some goodbyes.  That’ll do me.

I suppose the whole process is likely to differ from that simplistic, preferred outcome.  Dragging on and on doesn’t work.  Neither does croaking before saying goodbyes.  Both are probably more likely than my “ideal”.

Buttock pain has been a feature of my cancer.  It’s there today, which is why the morbid thoughts are circulating!  Not as bad as it was when I started drug one.   Not as bad as it was when I ended drug one.  Not restricting my movement as it did.  But it’s there.  Presumably a shrunken tumour waiting to return in all its evil glory when my drug fails.

It’s just that I feel I’ve still got stuff I want to do.  People I want to see.  Kids I want to be supportive of.  And my movement this last few days has been so much freer than the period that came before.  Hell, despite it being Oldham Athletic, there’s football I want to watch!  It’s fun for the first time in years!

It is inevitable that I’ll worry about any and every pain.  But I reckon the tumour on the pelvis is the one these fancy drugs can’t eradicate.  I just hope osimertinib can keep the swine small for as long as possible.  I’m happy to cheat death for a little longer yet.

Waiting For Pain

It was an entertaining Saturday.  After assisting the ex with her Avios account and pension planning I headed off with Chris to Wetherspoons for their large breakfast.  It proved to be a good investment as we returned later to have a very cheap small tea to top up the morning’s excessive calorific intake.

Both experiences involved Chris telling me to speak up.  Deaf as a post I feared being heard to shout in a public place.  And overcompensated reducing my volume to an incomprehensible whisper.  Frustrating for both of us I think.

The football brought the desired result.  A 3-1 win over local rivals Rochdale in a game that looked to be heading for a draw until the Ginger Aguero, Eoin Doyle, scored two late goals including a piece of beauty to wrap up the scoring!

Back home and I figured on an early night.  Four days post zometa treatment wrecked me four weeks earlier.  I figured on getting in a few early hours sleep before extreme pain hit me again.  And five hours after nodding off, in the early hours of Sunday morning, I awoke.

My drugs were lined up alongside me.  I’d already taken a naproxen to quieten my one remaining tumour related buttock discomfort.  Paracetamol, quick hit oral morphine and slow release morphine tablets sat alongside my bed.  As well as the olive oil drops for my bungee up ears!

A key preventative measure to avoid having to rummage through my multiple pharmacy bags in the dark.

But the agony just didn’t return.  Maybe it’s waiting for another moment to hammer me hard.  Maybe I’m resistant to zometa pain after the first dose last month.

I returned to the relative comfort of sleep and despite some strange dreams probably got a good nine hours either side of the interruption.

All is good.  But I’m pretty sure that niggling buttock feeling will eventually finish me off.  Not for some time hopefully.

Morphine Wipeout

Tuesday saw my bone strengthening treatment in the form of introveneous zometa.  Last month, four days later, I suffered some agonising pain from the same treatment.

Wednesday night I felt minor pain developing in my hips.  As a panic measure I reached for the morphine pills.  Just one.  It either worked as required or no notable pain was going to materialise anyway.  Most likely the other.

But it wiped out my Thursday.  A day filled with voids of nothingness, sleep and a bit of Star Trek Voyager somehow being successful at bringing sound through my headphones.

I did nothing useful.  I was wiped out.  A key reminder that I really should only use this drug in extreme circumstances.  Worse still, googling morphine this morning and I discover it destroys your teeth and might encourage … the spread of cancer!

I suppose if I’m in pain and close to the end that might be a good thing.  For now though, I might put the pills on the other side of the room.  Then I’ll need effort to take one!

Flying to Finland – or Not!

Today would have been the start of my Ashes tour down under.  Flying from Manchester to Helsinki.  An unusual routing on Finnair chasing Qatar Airways’ business class sale from Helsinki to Sydney via Doha.

But it wasn’t to be.  My drug change has saved my life, temporarily, but denied me the solo holiday of a lifetime.  Three days near the Great Barrier Reef may even have outdone ten days of competitive cricket.

My previous plans to visit Finland have also failed.  Shefki Kuqi (photo), known as the Flying Finn for his glorious goal celebrations, spent a season playing for Oldham.  When he returned to his native Finland as a manager we had the idea of going to watch his team play.

That never got off the ground.  Despite the Finns playing their football in the summer months the dates never quite aligned and we never made our boys trip to Scandinavia to watch football and see some pine trees.

While it’s sad that I miss my night in Helsinki, I do get to see Oldham play Rochdale tomorrow.  And that brings a reminder of Kuqi scoring a wonderful goal against Rochdale during his time at Oldham.  I swear that ball was in the air for a minute before he volleyed it!

A New First Class Soirée

Last weekend the Oldham Athletic game at Southend United was called off.  International call ups had, somehow, left Oldham without enough players to play the game.

I had been ready to press the “book now” button on £150 of rail tickets for me and Chris but held back knowing there was a chance the game might not take place, risking more expensive tickets if it did.

Others were less fortunate.  My Twitter feed last Saturday filled with pictures of a large group of Oldham supporters outside Southend airport.  They’d taken the non-refundable early morning Flybe flight south and, with no football to ruin their day, were about to commence a day of Christmas shopping.  Or maybe drinking.  Before a Travelodge night and flying back the next day.

It reminded me of Mr Corbyn’s election promise to refund the cost of advance rail tickets to football supporters who’s match was called off.  A small part of his land of milk and honey election campaign.  Didn’t extend it to decadent budget airline flyers heading to the match though, did he?  Maybe Teresa would have done better making a similar pledge to those buying advance rail tickets to attend a cancelled fox hunt …

Moving on, the Southend game has been rearranged for the first weekend of December.  Mainly due to both Oldham and Southend being giant killed by lesser sides in the previous round of the FA Cup which reaches the second round at the same time.

In preparation as a trial run for our mammoth Plymouth train journey later in December, I’ve bought the Southend rail tickets this morning, benefiting from 500 bonus Nectar points.  Prittlewell station is the final destination.  At this point in time I feel up to the nine minute walk from station to Southend’s Roots Hall stadium.  I’ve allowed ninety minutes to cover the distance if the trains are kind.

The tickets are also first class.  This gives us access to the Virgin lounge at Manchester Piccadilly.  And London Euston.  The former we experienced last month on the way to Milton Keynes.  It’s a broom cupboard serving coffee, biscuits and crisps with signs on A4 paper sellotaped to the wall saying don’t steal the biscuits and crisps.  I’m struggling to understand what the point of a lounge is if you can’t secrete quantities of supplies in your bag for later use.

A tube trip across London from Euston to Liverpool Street will be followed by our first experience of Greater Anglia rail services.  An hour to enjoy their varied first class service which apparently extends to green tea and a variety of coffee in addition to the less exciting weekend drinks choice on Virgin.

It might not be first class flying to Boston or Vegas.  But it should be fun.

Good News – I Think