Seeing the World

The wonderful Settle to Carlisle railway took me to the top left hand corner of England a few months back.

This time it’s the magic of the FA Cup.  Carlisle United of League Two taking on Oldham Athletic in the first round.

This stage of the competition has always seemed a million miles away from Wembley. But with Tottenham playing home games at the national stadium there might be an opportunity, given two wins, for a lower league or even non league team to get to Wembley in the FA Cup without getting to semi final or final.

Its a competition I love.  I’ve seen Oldham beat Man City, Everton and Liverpool over the years and in a previous life saw Stockport knock out then top flight QPR.  I tend to like the underdog.  It can be hard work at times but great moments of joy every few years seem to make it worthwhile.

Although our match tickets are remarkably cheap, the away fans will sit on the left end of the stand in the photo.  That’s an area that’s not even level with the pitch!  Apparently many years ago there was a plan to move the pitch a few yards to the left.  One assumes the money never materialised and away supporters are left with a crick in the neck when they twist to watch the action 120 yards away at the other end of the pitch.

I’ve got a decent record at Carlisle.  Won 1, drawn 2, lost 0.  The draws were 2-2 after being 2-0 up and 3-3 after being 3-0 up.  You come away feeling like you’ve lost after that!

My friend John is driving.  Our lads will be in the back of the car.  And I’ll get a decent view of Cumbria’s magnificent scenery as we get further north on the M6.

Fingers crossed we’ll come home with yet another entertaining win.  And Benin the second round.

52 Weeks Since Diagnosis

The image above amuses me, if it’s possible to be amused by lung cancer.  The cigarette for one.  To be frank, the association of smoking with my illness pisses me off no end.  Granted, lots more smokers get the illness than non-smokers.  But the doctors I saw on my pre-diagnosis journey of around seven months were simply not thinking lung cancer.  It wasn’t on their mind because I didn’t smoke.  I’ve never smoked.  The other symptoms listed were also not present.

The medical profession en masse weren’t thinking lung cancer.  It wasn’t and still isn’t on their checklists.  I don’t know if earlier access to afatinib would have meant smaller tumours in my bones and allowed the drug to last longer than the few months I got, but it’s a theory.  And while I’ve been accepting of my condition and the inevitable end game I think this naffs me off a lot.

Going back a few months before I got the news officially.  A pre-diagnosis journey where I was told I had an unusual minor back twist by a young GP.  Cocodomal was prescribed.

A BUPA questionnaire by phone where I described my back pain and, after a good half hour, a referral for physiotherapy.  My deteriorating bones didn’t respond to the basic slipped disc treatment.

Even the neurosurgeon didn’t have a clue.  At least he tested me for myeloma, an altogether more pleasant cancer if that’s possible, but that came back negative.

Then, after he’d collected several thousand pounds for propping up my spine (relief I’ll be forever grateful for) he referred me on to his oncologist mate.

A new private hospital.  A new doctor.  He didn’t even have the scan pictures.  But he did have the written radiologist report.  Definitely lung cancer.  I challenged him.  Could it be bone cancer that’s spread to the lung?  Survival rates at five years a lot higher if it is.  He shook his head.  How long have I got?  He shook his head and said he couldn’t commit to an estimate.  He had me lifting my legs up and down on his couch.  I think this was more an effort to make it look like he was earning his money as by this stage he’d already said to head back to the NHS, knowing my BUPA cover didn’t stretch as far as cancer that had spread.  A victim of the banking crisis – good old HBOS would have covered me.  Not that the private sector were any better equipped to save me.  At least I could go into decline in a private room with wifi!

I left thinking I’d be dead before the end of the football season.

A year has passed.  Based on 2010 data just 30% of those diagnosed with this disease at the same time are still alive after that year.  2015 data says that’s improved to 38%.  Five out of every eight are dead.  Reading between the lines that improvement is because of the “nib” drugs being prescribed to non-smokers.  I suppose I should be happy that the breakthroughs have focused on my subset of patient.

Can you imagine a group of eight of your middle aged friends. And then a year later five of them being dead?  I find the numbers hard to get my head around.  Of the three still going the statistics say two of us will be gone within the next four years.  They’re not great odds.  My recent drug change and mobility deterioration make me think I’ll be joining the majority.  And I’ve no desire to depart.

Ok, that’s overstating it.  I never saw the beach, let alone the sea.  But I did see my Dad for the second time this year, an achievement not matched since 2005.

Its a day that started badly.  My right leg which has been much improved but not perfect since my change of medication woke up weak.  Pins and needles had spread from my foot to the whole leg.  Oncobabe has referred me for an MRI scan on Monday to see if the cancer has spread to my spine.  Given that my initial symptoms of cancer were spinal it’s not an unlikely theory.  But then surely the osimertinib would zap that for now?  Unless part of my spine has collapsed?  That could come from old bone damage or new.

The other negative this morning is a wicked cough that hurts my chest when it’s released.  And it is released way too often.  A couple of days of discomfort from that!

The drive to Southport involves country roads when two cars can’t always pass, traffic jams in a town called Colne, a hit of motorway (for those that remember Swampy he lived in trees here for a bit trying to halt construction) and some half decent roads between the end of the motorway and my destination.

I opted out of the queues in Colne to grab a McDonalds coffee.  Necessary for throwing down my cancer pill.  Exciting too, because the loyalty sticker on the cup means my next McDonalds hot drink will be free.  It’s not quite a free hotel room but I’ll take it.

Despair as I saw petrol priced at 111.9p a litre.  3p less than I’d paid the night before for a full tank.  The pain at being out of pocket to the tune of £1.50.  And then an uneventful journey where, other than cursing a Nissan Qashkai doing 35mph in a 50mph zone, not a lot happened.

Then time with Dad.  We compared our medical ailments, had lunch at his expense and shared humour.  It’s amazing how well you can get on with somebody you’d fallen out with and virtually ignored for over a decade.  Make peace with your families!

Back to finishing the spring clean tomorrow.

The Spring Clean

For reasons unknown, the Australia question pretty much paused my life.  I’ve sat in my room for weeks knowing it’s a bit of a mess with the view I’ll sort it when I know if I’m off to Oz or not.

Im slightly gobsmacked as to what a mess it is.  This morning I’ve spent two hours on the space to the right of my bed.  Filing insurance claim paperwork.  Binning trips been and gone paperwork and ridding myself of other stuff.

I now have my emergency hospital bag packed too.  It sits by my bed ready for a taxi or ambulance to rush me to hospital if needed.  I’ve done this because the thought of having to wear a hospital gown, as I did for last week’s X-ray, is appalling.  Pyjamas, two days underwear and socks and key cables for phone and iPad are in there. Together with a basic washbag.  Toothpaste.  Toothbrush.  Deoderant.

The whole situation took me back a year.  I was waiting to see an oncologist privately – he was going to tell me a diagnosis I didn’t want to hear.  The thorasic surgeon didn’t want me as he knew I was inoperable.  I googled lung cancer survival rates and the magic number six months kept coming up.  My instinct was to organise a will and throw out my junk to minimise any work my sister and kids would have to take on when the inevitable happened.  So I did.

It was a pretty thorough clearout.  More severe than anything I’ve done this morning.  Stuff chucked away that while I’d valued it at some stage it seemed to mean nothing in the spectre of not having a future.  It was an intense day mentally that sat several weeks before I decided to quit work and live a bit.

Tomorrow I’ll do the left side of my bed.  My differing flight bags sit there. Hopefully I’ll be fit enough to use them for short flights soon.  A pile of business class vanity kits also sits unused.  I love getting the “free stuff”.  I often forget to use it.  Or allocate it to a travel bag I’ve never used,  I think I’ve received eight this year.  And other than the lip balm in my Iberia bag, which came to my rescue in Chile’s Atacama Desert, I’ve not used anything.

Phase two tomorrow.  And then the car …

The Refunds Start Rolling In

As the big businesses of the world process my refunds, the cards I paid with start to see the benefit.

My American Express Platinum card (that’s the one that gave me 30,000 Avios, free non-cancer travel insurance and airport lounge access, for £37.50 a month) needed me to clean out the Reward Points in the account before the refunds hit.  Mainly because they’d have triggered a cancelling of over 30,000 points.

So I utilised the points for hotel rooms yet to be booked yesterday.  Nick of time.  Today Hotels.com have put my Amex Platinum in credit.  They’ve also put my Halifax Clarity card in credit too.  As it stands I’ve hot about £1,400 to spend and nothing to spend it on!  Irritatingly, these two cards are ones I rarely use.  And I want to cancel the AMEX card as lounge access and travel insurance isn’t exactly beneficial right now!

With the exception of QANTAS, the airline industry is notoriously slow at refunding customers their money.  Aer Lingus took two months giving me my money back after cancelling a flight last year.  Qatar and Finnair aren’t off the starting blocks yet.  At least Qatar have told me my refund entitlement.  The Finns haven’t bothered acknowledging my claim.

And the Avis.  I’d forgotten about Avis until this morning.  A three day car hire out of Cairns Airport to see crocodile, rainforest and the Great Barrier Reef.  Cancelled this morning.  I’ll check if I’ve paid them anything up front.  That’ll be another amount to bump up the positive credit card balance with.

Keeping track is quite a challenge!

Reconciling The Refunds

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