Seeing the World

I try not to click on those Facebook links that promise interesting stories and take you to an advert filled site that takes ten minutes to produce the first readable paragraph.

But I was tempted in by a “Chile is the place to go in 2018” link.  A watered down article without excessive adverts can be found here.

As the kind of man who tends to be approximately fifteen years behind the latest trend it’s nice to have got myself ahead of the curve on this one.  Chris being the main reason I was persuaded to go.

The article in the link above doesn’t really do justice to the Atacama and doesn’t even mention Easter Island.  Focusing instead on the cities of Santiago and Valparaiso.  We didn’t even visit the latter.  I can sort of get their love for the capital but I’m not really a city dweller and, in truth, found it a bit meh.

But would I recommend the world’s number one destination as a place you really should visit?  Absolutely.  Not if you want to put your arse on a sunbed and relax.  But if you want to get out and really see an extraordinary country and are willing to take multiple internal flights or long distance luxury coach journeys overnight you really won’t be disappointed.

Smaller budget?  Well the Lonely Planet people also wax lyrical about the Northern Ireland coastline being perfect for 2018.  I found welcoming people, spectacular views aplenty and cheap car hire and accommodation.  £1.20 for an ice cream by the sea too – bargain!  Get there before the rush.  And park in the pub car park next to the Giants Causeway to buy a Guinness and avoid paying an obscene amount to the National Trust!

As I Continue to Drain The NHS

No medic has volunteered information on vaccinations for me this year.  Despite the risk of lung infections being dramatically higher than usual.

I’ve never had a flu jab before nor have I felt I needed one.  After a bit of nagging from my sister I asked the nurse at the hospital if I should have one.  Three hours later she phoned me to say yes, I should.  There is no information online about flu jabs and osimertinib.  I assume nursey asked Oncobabe who took a flyer and said yes to me getting a jab.

On receiving this news I immediately recalled one of my staff having a flu jab and being off sick in the immediate aftermath – and it lasted for weeks.

But, however, I made my appointment with my GP and wandered down there this afternoon.  A popular place on a Thursday it would seem, but I managed to get the only disabled parking space and wandered in.  Amazingly, room seven was operating on high speed turnaround of patients and I guessed it was my turn soon.

Indeed, five minutes early to room seven.  Jumper off, minimal discussion or confirmation of need.  Stab.  Gone.  My veins are now filled with the flu virus.  I just hope it remains in the background as it has been something of a time period where what can go wrong will go wrong medically.

I even ponder the best way to depart this mortal coil.  Flu or cancer?  I need to banish such thoughts from my head though.  I’m definitely feeling lower than I was during the summer.  Not to the point of depression.  But a little less enthused.

Maybe resolving the Australia question either way will lift me next week and free me to set new travel goals.

My Right Leg Just Isn’t Right

Well what a difference a year makes.

Friday 21st October 2016 I left work for the last time.  I didn’t know that this was the case on the day.  I expected to return early November.

Sunday 23rd October 2016 I met Rachel for the second time.  It was her birthday.  Card, wine, chocolates and a walk around Saltaire.  I struggled a little with the steps.  We shared a coffee.  I had a good feeling.  A positive online dating experience that came with £55 from Topcashback!

Monday 24th October 2016.  The hospital sent a car to collect me for my back surgery.  I’d packed a bag with one night’s clothes and my iPad.  Wifi in the private ward.  Somehow my spine had crumbled in three bones.  My neurosurgeon had decided to perform vertebroplasty surgery on L4 I think.  Nights of scream level sciatica should be about to end.  He told me the good news that he could see nothing unpleasant on my CT scan.

The same morning his anaesthetist came into my room to explain her role.  She commented on my eye which had been itchy for a few weeks.  Post operation my ability to drink without it leaking out of my mouth on the right side had gone.  Two weeks earlier Louise, my stepdaughter, had said something about my face at her wedding but I’d not done anything about it.  It later transpired that Rachel had thought my face was a bit wonky.  But you don’t really mention it to somebody you don’t know.  Bell’s palsy had set in and was about to change for the worse.  For many, it quickly distorts their face.  For me it took a few weeks.  And a visit to Louise a couple of weeks later where she gave me the clear message that my face was a mess. Would it be a little shallow of me to punch the air in joy knowing I “pulled” with my face looking a bit contorted?

Given that steroids taken within three days can fix Bell’s palsy quickly, I’d urge anybody spotting the signs in somebody to say so immediately.  And the victim to insist on a same day GP appointment.

A year on, my Bell’s palsy remains.  The eye gets sore less, despite remaining open at all times.  I’m used to the nose bleeds from the tear caused by one side of my nostrils dropping.  But I hate it.  And my smile attempts continue to produce a diagonal line.

Late morning on the 24th October 2016 I was wheeled in for surgery.  Loud music.  Aerosmith.  Dude Looks Like a Lady.  My neurosurgeon’s approach to distraction apparently common in his trade.  And it took my mind off shitting myself at the prospect of somebody playing with my spinal cord.  Half an hour later and my dead bone had been replaced or topped up with surgical cement.  Two hours later I could move around the private room.  And had a desperate need for chocolate was fulfilled by ever attentive staff.

25th October 2016 the hospital transported me home.  I’d watched much of Narcos on Netflix post op.  Matt my stepson providing access.  Much appreciated break to the boredom.  Later on my neurosurgeon called and I described the improvement in my sciatic pain but let him know that I still had a pain in the butt.  He apologised for not getting rid of all the pains but I was pleased.  There was relief ahead.  In my view, his surgery has been an absolute godsend to me and my mobility.

Then he made me uncomfortable.  “The radiographer has picked something up on your lungs when he checked your scan.  Sorry I missed it.  I need you to see a Thorasic surgeon”.  Conversation over.  Google “thoracic surgeon”.  Discover their close involvement in lung cancer surgery.  Read on to discover that if it is lung cancer, and it’s spread to the bone (or anywhere else) I’ve got six months to live based on average life expectancy.

A week and a half later I saw an oncologist.  The thoracic surgeon had presumably told my neurologist he couldn’t save me.  In the interim period I’d convinced myself as a non-smoker that I was fine.  Just a niggle of doubt.  I slept well the days in between.  Butt pain remained, and as regular readers know has returned since.  I wasn’t aware how evil it was that week though.

It was a week that changed my life.  The odd paradox of having my back pain improved, meeting somebody special and getting a warning shot that my life expectancy is possibly dreadful, and burying my head in the sand for a few days over that emerging reality.

It was into November before I started dealing with that reality.  Bounced back to the NHS.  A room full of people taking notes to prove I’d been told I was a goner.  Eventually biopsy and a referral to Oncobabe.

I should probably have been terrified.  Perhaps I was.  Difficult conversations with the kids.  I think I’m more disturbed by it now that drug one has failed.  But I’m still calm about my fate.  While hoping the ever decreasing chances of long term survival might see fit to benefit me.

Doped Up Sunday

An exciting day in Milton Keynes. A town of seemingly dozens of out of town retail parks.

The Virgin first class lounge at Manchester Piccadilly was, er, basic.  The train journey good and we eventually worked out the bus route to the ground.

A wander around the stadium, purchase the tickets and into the game.

A magnificent first half saw Oldham storm into a 3-1 lead.  With ten minutes left it was 4-2.  Atmosphere among the impressive visiting support euphoric.  Final score 4-4.  Sickening!  Still, the unbeaten run continues.

Eventually I found myself at home around 10pm and, due to my improved mobility and lack of pain I made the big decision not to take painkillers.  I taped over my Bell’s palsy eye and sleep found me quickly.

When I awoke, in pain, it was 1.45am.  I took an anti inflammatory and lay there.  Some sort of hip pain on both sides?  I felt like I’d been stretched on a medieval rack. Presumably walking greater distances over the preceding couple of days had decided to hurt me.

I added paracetamol to the drugs taken.  Half an hour later, no improvement.  Quite the opposite.  My legs felt barely attached to the rest of me.  Straining.  Agonisingly.

Next drug:  oral morphine.  I downed a teaspoonful for a quick hit.  I spilled about the same on my pyjamas and carpet.  Quick change.  A little improvement but not enough.  Time.  No further improvement.  Fourth drug added – slow release morphine.

I lie on my back.  My front.  My side.  Still struggling.  Almost shouting out into the night as Storm Brian battered the window.  Discomfort on a high scale.  Still a feeling of being physically stretched.  Struggling.

Now, after 5am, I ponder a fifth medicine.  Amytriptoline.  I’ve not combined this with morphine before.  But the right hip pain is referring itself to the right ankle.  If I do this it really will be a zombie Sunday,

I got into bed feeling pretty good.  Three hours sleep before I discovered that feeling had gone.  Four hours of attempting and failing to sleep despite being drugged up.

It hurts at the moment.  Not enough to trouble the hospital, but enough to use just about all the drugs issued last time I did.

I hope this is going to be short lived and exercise related.  Not something more sinister.  It’s fair to say this isn’t very nice at all.

It’s Just Like Another Holiday

It’s not many people who would treat a trip to Milton Keynes as similar to another holiday.

But I’ve missed planning new trips as my flying ability remains in doubt and while there are no Avios points or free hotel nights with this one the modest planning and anticipation has been a welcome distraction from drug change, possible trip cancellation and some residual pain.

My two driving forces over the last year have been “I can do stuff despite this illness” and “there might be a more effective treatment before this disease gets me”.  And they remain the same.  Having stuff to look forward to, even if it’s Milton Keynes, has been extraordinarily important.

There are footballing reasons to look forward to today.  Oldham have been quite good at kicking the ball into the big netty thing at the end of the pitch in recent weeks.  An art rarely mastered in recent years.  That said, the eight occasions they’ve rocked up at Stadium MK have seen no wins.  And included defeats like 5-0, 6-2 and 7-0.

So booking our first class train tickets during the week gave me a genuine buzz.  Discovering it’s family fun day at MK and admission to the game is only £12 and Chris might be able to shave and convince them he’s worthy of £1 junior admission a bonus after paying a small fortune to get into Bradford City midweek.

It is still pretty much a normal Saturday.  Wetherspoons breakfast.  Hope they’ve sorted out their refillable coffee nonsense.  Head to Boundary Park to get even cheaper tickets for a game at Carlisle in two weeks.  Then wander into Manchester to get a relatively late train to Milton Keynes and onto Bletchley.

Footbal match.  Grab food afterwards and then home time.  No Toby Carvery today.  No airport lounge.  But the thought has just crossed my mind that the Virgin Rail Lounge at Manchester Piccadilly might open weekends.

It might not be as exotic as Easter Island, the Atacama Desert or as beautiful as The Bay of  Kotor.  It might not be as stunning as Grand Canyon or Death Valley.  There won’t be help yourself Bollinger

But, despite Storm Brian, I’m looking forward to the day.

Side Effect Heaven

The change of drug to fight my cancer has been generally positive so far.  The pelvic tumour has shrunk or gone.  It’s not a nuisance to me anymore.  It has been replaced by a series of other pains in the right thigh.  These have reduced from bloody painful to mildly irritable as the week has progressed.

Indeed, today I was able to walk unaided around Halifax town centre for a decent time.  Tired, yes.  But not in pain.  My assumption is whatever my new pain is will now fade further.

But there’s more good news.  The old afitinib tablets had two key side effects.  The first being the need to make a mad dash to the gents.  The second being made to relive my teenage years with a pleasant and ever changing dose of acne.

The acne also lived on my chest.  Pock marks everywhere!

The good news is that since switching drug my acne has virtually vanished and I’ve not suffered the trots once.

While I remain cautious about my now diminishing leg pain, there are things that are rather positive.

Loss of Appetite