Seeing the World

It’s nearly a year since I got my disabled badge.  It was a source of amusement when it arrived.  I could walk distances with relative ease.  While quite willing to park in the disabled bays I deliberately positioned my car in the space furthest from the store entrance.  After all, it was likely that others had more disabilities than me!

A perk of my terminal condition, it arrived with a list of do and don’t.  I can park on yellow lines, but only for three hours.  And not if those lines are also striped on the kerb.  I can park on a roadside pay and display meter for free.  No time restriction.  If I park in a disabled bay at my nearest NHS hospital they charge me £5.  If I park on the street outside and hobble in, further damaging my leg, it’s free.

Some car parks are free for the disabled.  Others charge.  It’s quite frustrating because they rarely put the pay and display machine near the disabled bay.  You end up parking, walking a fair distance to the machine and sign, and checking the small print to see if it’s free or ticket.  There is no consistency.  Some councils charge, others don’t.  Some private car parks extend a freebie.  Others don’t.

A year on, I recognise the need for my disabled badge.  The perk of terminal illness is now an absolute must for me.  The Motability car and blue badge have extended my ability to lead a worthwhile life.  But I can clearly see my decline over the last few months.

I walked miles in Slovakia and Slovenia in February and March.  I was no slouch inChile in July, although slowed in the final week.  On Saturday I struggled unbelievably to get from football ground to nearby station.

And that struggle sits with me.  My right leg is unbelievably feeble.  Yet oddly supports my weight better on stairs since I changed cancer drug at the start of October.

I was knocked from behind outside the football at the weekend.  Granted, I am now that frustrating slow walker you can’t wait to get past.  But I’m carrying a walking stick – get past me but give me space as you do it!

If there’s a railing I now reach for it.  I need it.  And I now have insight to the remarkable lack of handrails in the country.  Stairways in football grounds (and presumably other event venues),   Public lavatories.  Hotel bathrooms.  Places where a simple railing or handle would make the life of millions of infirm people, and more importantly me, so much safer.  And easier.

I can see my decline over the year.  I don’t like it, but I suppose it’s an inevitability.  But I still want to lead as active a life as possible.  But I can see how a lack of basic facilities, thoughtless attitudes of others and genuine fear of falling on my part lead to people staying indoors when they could or should be out and about.

This feeble leg is driving me mad!

I’d Have Been Struggling Down Under

English cricketers have been suffering down under.  And it’s becoming clear that had I made the epic journey I’d be struggling too.

The three big trips I made between June and September were fantastic.  But they were made with a companion.  Even then, they took it out of me a little.

My struggle with Saturday’s trip to Southend tells me a lot about myself.  Being knocked from behind after leaving the football ground rattled me.  One of these days I’ll end up swinging my walking stick at a thoughtless so and so doing the same.

Lugging my big suitcase solo across Oz would probably have been achievable, but I’m not convinced I’d have stayed strong throughout.  Sunday morning’s evil thigh pain happening in Airbnb landlord occupied accommodation might not have been popular.

And while weather at the two games of cricket I’m meant to have attended has been cooler than expected, sitting in the same place all day with my dying leg wouldn’t have been fun.  Nor would sitting amongst jubilant Aussies!

I have no regrets over booking the trip.  And any regrets about cancelling it are diminishing every time we lose another wicket!

The Night Pain Keeps Coming – Can’t Really Keep on Running

We arrived at Manchester Piccadilly station in good time to commence our trip to Southend for the big League One game of the day.  Southend v Oldham.

Greggs £2.25 breakfast was the plan.  But their value sausage and bacon muffin with coffee for little over £2 proved too popular as the queue snaked out onto the station approach.  So we ended up in a place called Leon who, for twice the price of Greggs, supplied a bacon and sausage sandwich with the added extras of a pointless leaf of spinach and a seasonal cranberry sauce.

We then wandered up to the rather scruffy first class lounge where I harvested a flapjack and a coffee before we headed to our train.  Then the chaos commenced.

The two trains before had been cancelled, placing inevitable pressure on our 9.35am service.

We headed to our reserved seats, grabbed a bottle of water from the onboard fridge and waited as the train filled.

And continued to fill.  And fill some more.  By the time we departed the first class carriages resembled something like a Delhi to Calcutta service.

Then the rather irritating, although perfectly understandable, announcement.  “Thus service has been declassified”.  In other words, no free coffee and sandwiches!  The good news is that this will trigger a partial refund.  As and when I fill out the form!

As the journey commenced we witnessed a spat between two ladies arguing over seats.  I’ve no idea what the writes and wrongs of the case were but the pair of them shared some vicious eye contact for the next couple of hours!

Euston was heaving.  Despite my walking stick being in use, the people of the south were taking no prisoners as I hobbled behind Chris.  Hell, I’ve felt impatient thoughts to slow movers in front of me in the past.  But brushing past a bloke with a stick, unbalancing him, was certainly not something I’d ever have contemplated.  Being on my feet in crowds is a major threat to my health it seems.  Leg break risk.

We tubed it across London to Moorgate and on to Liverpool Street.  Both stations appear to be going through significant investment.  Both stations suffered from an appalling lack of signs as a result of the refurbishments and we took wrong turns on a couple of occasions.  More than once I felt irritated by the investment being made when the concept of electric trains across the Pennines gets repeatedly “delayed” by governments of all shades.

At Liverpool Street we found our service to the town of Prittlewell.  A nicely named dive of a place near Southend United’s stadium.  The first class compartment consisted of a small part of the carriage where there were four seats across instead of five.  It soon became clear that the “free” coffee and biscuits I thought I’d paid for by travelling with the posh people didn’t exist.  This was first class with no wifi, no food, no staff to prevent scrotes joining you from cattle class.  I’ve no idea how much extra I’d paid for this segment, but it certainly wasn’t worth it!

Then the walk to Roots Hall stadium.  Slow with the stick.  A portion of chips and a teaspoon full of gravy from a handy and popular chippy.  A ten pound note handed over for two portions.  A small number of coins returned in change.  I think southern owners of fish and chip emporia make significantly more than their northern counterparts!

Into the ground, scanners for turnstile operators.  I could easily have bought us two under twelve tickets and we’d have still got in!

Then the match.  Conceded a penalty.  Missed our own penalty.  Miss a couple of other great chances.  Lost 2-0 and played poorly against the hard working southern softies (who deserved their win).  After weeks of exciting and goal packed football it’s now three games in a row without hitting the netty thing at the end of the pitch.

Back to the trains.  An earlier service than planned meant more lounge time at Euston.  After we’d navigated a path around waiting masses in the concourse.  A real struggle for a man with a walking stick.

I guess the Virgin lounge at Euston is a pleasant retreat on a normal day.  A wide choice of unhealthy snacks.  Fruit juice as well as hot drinks.  And they even sell alcohol in addition to the freebies.

Saturday night the place was in carnage.  Filthy.  Packed.  And I was beginning to feel keg ache from my walking.  So I despatched Chris to seek,out supplies.  Another flapjack returned!  Then an announcement.  “All trains have been declassified”.  The morning’s overhead line difficulties clearly not resolved.  I sent Chris off to get more supplies as our first class on board sandwiches were clearly not going to materialise.

And then, just after 7pm, the predictable news that our 19:20 train was delayed.  The nice lounge lady pointed us towards carriage G on the 18:40 service which was still sat on platform three.  We grabbed empty seats.  And a bottle of water from the help yourself cupboard.  And promptly plugged phones in to charge.  Then the train filled up.  Nice people on the table next to us.  Loud obnoxious tossers overdoing their gin further along.

The journey was slow and tedious.  My leg was developing quite severe pain.  And not enjoying the slowness.

But, on the exciting side, I was able to monitor the 19:20 service that we were meant to be on.  45 minutes late.  Half refund for me!  55 minutes late.  Cone on, be over an hour late and it’s a 100% refund.  Get in, eventually it did!  75 minutes late!

It was a long and arduous day.  The football was poor.  The leg in pain.  But hey, there’ll be a refund of around 75% of what I paid out for the various (and expensive) train tickets.  Every cloud!

The Leg X-ray

My right leg has been in trouble since the middle of last year.  Back pain and sciatica were the name of the game then.  Little did I know the story of destruction that my bones had already gone through.

The good news is that the sciatica has pretty much stopped.  That back surgery last October (and £900 in surgeon fees to top up the BUPA contribution) have been kind.  To a point.

But my right leg remains weak.  At times it feels like it’s disconnected from my pelvis.  And my pelvis feels like it’s disconnected from my back.

Part of me blames Oncobabe.  Much of the deterioration has happened in recent months.  I think she was slow to shift me to osiminertinib.  After all, I told them the afatinib wasn’t working four months before the change of drug.  Part of me is grateful for the delay though.  First class flying to New England, the Chile magnificence and a return to South West USA would simply not have happened if I’d changed drug sooner.

And those are memories I’ll cherish to the end.

But the leg is a nuisance.  Walking stick.  Pain that has worsened in recent weeks.  A definite limp that is more pronounced now than even a couple of months back.

Oncobabe fears a leg break.  So much so she ordered an X-ray last night.  I donned a ridiculous medical gown (these things will only ever reveal your rear or the crown jewels) and entered the room.

I’m used to X-rays.  On my chest.  Stand there, deep breath, flash, clear off.  Easy.  The leg was different.  Several snapshots taken.  “Can you angle your feet in?” – no it f***ing hurts if I do that.  “I need you to lie on your right side.” – p*** off I’ve not laid on my right side for 18 months because it hurts like hell.  “Please can you life the leg up so I can slide this board underneath it.” – yes, but be patient as the interaction between brain and thigh now takes a few seconds instead of a few nano-seconds!

Needless to say I kept my obscenities to myself and complied.  But it was uncomfortable.  And I nearly rolled off the trolley at one point.  That would have given them something worth pointing their radio waves at!

Eventually they released me.  Although it’s clear I’m a mess down there I assume somebody important checked to make sure they were no breaks or fractures before they released me into an evil West Yorkshire rush hour.  They certainly took long enough.

Today I’m meant to be doing something exciting around The Great Barrier Reef.  Alas, that trip is not to be.  And I cancelled the car hire out of Cairns Airport a few weeks back when it popped up on my Avis account online.

I noticed earlier that no refund had appeared in my bank account for this so went back through my Oz email folder to discover I’d booked via British Airways.  My motto of avoiding intermediaries because they confuse things not applied in these circumstances.

Big mistake.

Well medium mistake to be fair.  Had I booked direct with Avis I’d have been refunded in full immediately.  But by booking with BA and cancelling with Avis I hit a problem.  Avis don’t tell BA that the booking is cancelled.

I rang BA who said “no refund as you didn’t cancel via us” in pleasant Geordie tones. I muttered my disappointment, threw in the word “cancer” and the agent scuttled off to ring Avis, leaving me on hold.  A quick update to tell me Avis have confirmed the cancellation.  Now she’ll have to ring the refunds department.  On hold again.  She tells me refunds are ringing Avis to check and she’ll call me back!

Within a few minutes she does call me back.  And confirms as a gesture of goodwill I’ll get a refund minus 20% cancellation fee.  Which was in my terms and conditions. But wouldn’t have been had I booked direct with Avis.

Feeling slightly miffed at the experience.

It hasn’t been the most active of visits.  It wasn’t really meant to be.  I did think that I’d perhaps get out and about yesterday, but in the end, in part due to a new back strain, I focused on hot tub, sauna and steam room and enjoyed a very English tea and scones in the lounge in the afternoon.

The hot tub is beneficial to me.  The water allows me to rest my aching bones in a unique way.  Taking pressure off them.  The jets soothe too.  Whereas sitting in a chair can often hurt, sitting in heated water allows me to raise my midsection off the ground and have it float in comfort.

So after another tasty breakfast, I’ll drive the two hours back home.  Pick up my free hospital car parking pass and meet up with my sister before heading to the land of the oncologist.

Would I do this trip again?  Possibly, although it would be cheaper to head to Anglesey and enjoy exclusive use of my sister’s hot tub without charge.  But I have to cook my own brekkie there!

What is clear is that my more active holidays of earlier this year are tougher to do.  If I’m going to get out and about its going to challenge me more.  And if the aches and pains won’t go away I’m not quite as up for that challenge as I was.

George Harrison Died Too Young

It’s sixteen years to the day since George Harrison the Beatle was killed by lung cancer.  He was 58.  He’ll be remembered by a few more than I will, but it’s an anniversary of an event that coincides with Liverpool based charity The Roy Castle Foundation lobbying MPs to do more around funding for research into lung cancer.

The simple fact is that despite being the biggest cancer killer in the UK the amount of research money thrown at the illness is lower than the body count says it should be.  I’m not privy to the reasons for this.  I’d hate to be the one pointing the finger saying “that type of cancer gets too much money” but surely the biggest killer should get a bigger share of the pot.

If it had done, maybe I’d have longer to live.  Maybe I was doomed anyway.  But more would be alive today,

Here’s a bit of George Harrison to cheers you up.  Classic pop from one of the greats.  Enjoy.

I Struggle With Short Term Thinking