Seeing the World

When I spent a chunk of the kids’ inheritance on the now abandoned Australia trip I was perfectly aware that I might not make it.  While my image of that risk was me wired up to a chemo tube or lying in a hospice bed, rather the being the healthiest I’d been in weeks (which is my current reality), I knew I might not make it.

Had the afatinib carried on working I’d be on those planes starting 17th November.  Alas, the 32 month average success barely got over the six month mark.

Yesterday, I managed to cancel everything.  Today I can begin to track the refunds.

All the Avios used to hook internal flights down under have been refunded.  Where I paid for a flight I have a voucher for AUS$348 to use against another flight.  Alas, that expires on 21st January.  A year after booking.  I’m not sure if I can book a new flight with it, cancel it, and get a longer lasting voucher!  I’m doubtful I’ll ever get to Oz!

Qatar tell me they’ll take 25 days to refund nearly €2,000.  I need to check where that refund is going.  My Travelex Supercard account paid for that.  As Travelex have withdrawn the product things might get complicated.

I can’t track down my Finnair terms and conditions.  I’m assuming I’m entitled to nothing.  Hotels.com and Airbnb are reimbursing various credit cards.  I might have some large credit balances on those before the week is out.

My Aussie email file can act as the key reconciler of these refunds.  Hopefully it will all be back in time for Christmas!

A Treat For My Feet

My feet have never been fun.  Nails that grow rock hard and take an immense amount of snipping.  Damage caused by a house move nearly a decade ago and balancing heavy furniture on them.  The swine also got regular athletes foot in my teenage years.

This year, I’ve treated my feet to regular podiatry.  Partly because my big toe nails were horrible.  Partly because there were times when I couldn’t actually reach the bloody things without suffering.  And partly because I take the view that the small amount of Personal Independence Payments I get should probably be used for this sort of thing.

That said, I’m at a loss to explain the six months success of having somebody else mess with my feet.  It seems that both big toes have sufferered ingrowing toe nails.  The efforts of the toot nurses to fix this don’t seem to have stopped my toes from reacting quite unpleasantly to the world.  Even a daily foot soak in salt water doesn’t seem to have improved the situation.

And yesterday I was forced to undress my feet in the presence of Oncobabe.  She also had my trousers off, but that’s a story for another time.  My feet are now a primary risk of premature death.

“You must tell your podiatrist not to open up any new wounds”.  The risk of infection it seems is high on her agenda.  I’m not sure how Mr Podiatrist can do his job effectively with this constraint.  That’s a discussion for 9.20am.  Interestingly, despite getting a nurse to bandage my toes, there was no effort to bring me back to NHS podiatry.

Infection when on a medication to deal with arthritis is what killed my mother.  I suppose I need to do my best not to go the same way.  There would be something of an irony of having stage four lung cancer and dying a result of a toe problem.

Well the Anticipation Kept Me Going For Nine Months

The Australia trip is off.  Oncobabe expressed serious concerns about travelling with the osimertinib when I’m new to the drug – risk of it failing.  She reiterated her concerns about getting an infection during 19 hours of flying.  She said coming off the drug for a few weeks was untested and likely to encourage an aggressive return of the cancer.

A few words about broken leg risk too.  It’s a shame because all my trips have been key to maintain my morale.  I’ve enjoyed thinking, planning, travelling and writing hugely.  It’s a great distraction to the elephant in the room.

While I’m sad the trip has gone I’m not devastated.  I’m upset to miss out on catching up with long departed friends who are looking forward to summer.  But UK alternatives will have to do for now.  I’m effectively confined to Great Britain for three months or so.

Football trips.  Anglesey relaxation and more is to come.  But planes, boats and tunnels are off limits.  It’s a bit like being grounded!

There is another Ashes tour scheduled for 2021.  Depending on which statistics you read I have a 4%-14% chance of being around for that.  Less chance of being physically able to travel.  The money will have run out by then too if I make it that far.

I’ve had an entertaining afternoon unwinding the bookings.  The big €2,300 Qatar business class flight from Finland to Sydney and back only cost €471 to scrap.  Finnair won’t tell me if I’m due any refund on the Manchester to Helsinki legs.  I filled a form in.

Hotels were all cancellable without charge.  And Airbnb are generous enough to refund their cut of the booking if you plead nasty disease with them.

The Qantas internal flights down under were mainly booked using Avios.  The good news is those Avios have been refunded.  Christ knows what I’ll spend those on when I can’t fly!

The Mystery of the Missing Oncologists

Monday morning sees my four week review of taking osimertinib.  It’s a fairly routine oncology appointment where, prior to kick off, I get a blood test and chest X-ray done first before wandering up to the third floor cancer ward.

The cancer patient has priority on these pre-appointment tests.  The idea being I turn up, queue jump and the results get processed rapidly for Oncobabe to see prior to seeing me.

The reality is that the system can’t cope on Monday mornings.  Everybody under the sun has seen a weekend medic ordering a Monday morning blood test.  X-ray is equally overwhelmed.  While the queue jump tends to work the result processing doesn’t.  At least twice I’ve seen Oncobabe to be told she hasn’t a clue what the results of these tests are.

So I wandered down to the hospital this morning to take the tests and give staff three days to get the results in front of Oncobabe.

Bloods took nearly an hour.  So much for priority.  At least, as always, NHS staff are good at extracting my blood.  Numerous attempts to punch holes in my arms and wrists tended to be needed in the private sector.  At least I had wifi while I waited on BUPA though.

Then X-ray.  They had no record of me, despite Oncobabe having told me to attend 25 days earlier.  Perhaps she should have mentioned it to the X-ray people!  They battled for ten minutes to get an phone answered on the oncology ward.  In the end I was sent up four flights of stairs to sort it out for myself.

Okay, I took the lift.  A chat with the receptionist established there were no doctors on the ward whatsoever.  I didn’t enquire as to why.  Autumn Party?  Onco Conference?  Half term holiday?  A mystery I shall never know the answer to.  I was sent along to the chemo ward.  It’s where I received my bone strengthening drug last week.  It gives me the shivers because it’s also likely to be the place where I get my last life extending medical treatment before dying.  And chemo for lung isn’t renowned as a table topping performer in the life expectancy stakes.

A nurse eventually attended to me and rang a doctor on another ward to authorise the X-ray.  I returned to X-Ray department via the lift going too far up and then too far down.  But as I approached the receptionist she smiled and told me I exist!

Five minutes later I’m told to remove my tops and put on a surgical gown.  Odd, because they’ve always been happy to X-ray me topless or through a tee shirt.  And whoever invented the surgical gown was clearly a sadistic individual who wanted to mock the ill.  What a ridiculous garment!

And that’s job done.  Over two hours effort, plus driving.  They’d better get those reports to Oncobabe on time!

The bloods will be the most significant.  What are my white cells and red cells doing?  How does this affect Australian travel wishes?  The X-ray tends to show the tiny 2cm shadows unchanged every month.  While I suppose the evil in my lungs may grow, it’s fairly likely, based on the damage done to my ribs, sternum, pelvis and spine last year and my pelvis this year, that new bone/tumour pain will beat the lung growth in the race to finish me off.

Still, my osimertinib diary for Oncobabe on Monday makes interesting reading.

Day 4:  I can feel the tumour diminishing within me.  Walking is a lot easier, although I’m cautious.  I feel great.  Appetite has improved but hasn’t returned to normal.

Day 11:  Severe pain in my right thigh for a few hours.  Treated with painkillers.  Movement restricted a little, but still better than when I started on the drug.

Day 14:  Attended Zometa treatment.

Day 19: Woke at 1am with hip pain.  Assumed it was a result of modest walking.  Took naproxen.  By 2pm it became agonising pain in both thighs.  It felt deep in the bone.  Paracetamol was quickly followed by oromorph and then slow release morphine.  Eventually the thigh pain moved to my lower back, left side.  I couldn’t sleep for several hours.  The drugs eventually knocked me out at 10am for several hours.

Day 24:  Had flu jab.

Overall I’ve felt run down.  While I’ve remained social I’ve not been interested in tidying my accommodation or organising anything.  Perhaps there’s a psychological reaction to the drug change where I know my life expectancy has taken a turn for the worse.  Or perhaps it’s just the drug.

I’m Ahead of the Travel Experts

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