Seeing the World

Somewhere in Chile, I’m not sure where, I lost a lot of the strength in my right leg.  I recall standing up with consummate ease one night before we headed to Easter Island.  By the end of the trip I was dragging the leg along as Chris led the way through the Santiago crowds.

On return to the UK a stiffness and awkwardness in motion of the leg peaked, and has only gradually eased over the last couple of weeks.  The top of the leg feels strained a little today.

That said, my painkiller intake has started to reduce.  Indeed, despite a little niggle today I have been drug free.

Which makes my limp something of a puzzle.  It’s been genuine for so long but today should be free movement for Stringy day.  So I was puzzled to catch myself dragging my leg along earlier.  No pain.  Minimal strain.

Maybe it’s still not quite right.  Backed up by still feeling a little niggly.  Maybe I’ve just become accustomed to moving that way in recent weeks.  But my little moment of self awareness has forced me to change my behaviour a little.

While not quite back to full speed, I am definitely more agile than I have been.  The right leg is just about as capable as the left.

I’m still left wondering why on earth I defaulted to a slow limp though.

What Was / Is the World Thinking

Most of the last decade of my working life was spent playing with Excel.  I quite enjoyed it, even if it didn’t feel like my more technical efforts were always appreciated by those more important than me.

But, despite that enjoyment, I’ve not seen an Excel spreadsheet in ten months and I’ve not missed it at all.  Google Sheets on my iPad is a poor substitute that I don’t use.  Excel has just disappeared into my history.

Yes, I miss the social side of work.  By that I mean the football banter, the stunned silence when a younger member of the team says she’s never head of The Eagles, the humour that might occasionally enter a team meeting.  Not that team meetings were particularly common when most of the team work 200 miles away.

But the petty politics.  The need to justify your existence to get a good appraisal grade because line managers didn’t really appreciate you or anybody else.  The feeling of deja vu as a failed idea from the 1990s comes around again, championed by an over-educated upstart.  And the intransigence of the big corporate lacking in flexibility when applying one size fits all policies to its people.

Least of all I miss the need to reapply for my job, or just any job, every twelve months as the job losses continued.  A key benefit of having lost my job!

Yet, bizarrely, there’s still a strange affection there.  My disabled parking space of choice remains outside the office. Perhaps a vague hope somebody I know will appear through the doors to chat before I trudge off to do whatever town centre business I occasionally do.

I don’t feel isolated.  I have found a life beyond work.  I miss the people, even the distantly located ones.  But I don’t miss doing a job I actually quite enjoyed.

Niggling Doubts

Last week’s scan gets reported to me in twelve days.

It will hopefully explain why I’m in pain.  It will hopefully confirm that it isn’t a result of the cancer returning.  There might be a Revels conversation to have!

But, inevitably, and despite my general calmness, I’m beginning to worry.  The pain remains.  It has improved but I’m still knocking back painkillers to control things.

I appear to have a slight chesty cough.  That could mean I have a chesty cough or it could mean something unpleasant has regrown in my lungs.

The oncologist appointment already provides a timeline challenge.  The prescription will be issued on a Monday afternoon and the drug needs to be dispensed by Wednesday morning.  This is a challenge for the hospital pharmacy.  The flight is Wednesday afternoon!

If I’m told the nature of my cancer has changed I’ll then have another decision to make.  Do I go through with my travel plans or submit to the likely medical advice to have a biopsy?  Most likely I’ll travel.  But that could mean three weeks of opportunity for the cancer to return and do it’s worse.

Of course, it might just confirm an all clear for now message.  And explain the historic damage that’s triggering pain now.

Where Next?

Well, where in October?  Next is the USA South West.  November/December is Australia and The Ashes.

Which leaves October full of potential to travel.  Perhaps twice.

My European trips have tended to be three or four nights.  Recovery time “the week after next” so there is the possibility of two trips.  Getting back from the States at the end of September might limit this though.  New England and Chile efforts have taken it out of me a bit, so Vegas to London to Dublin to Manchester might hit hard.

I have a few places in mind.  Denmark.  Berlin.  Bay of Naples and Vesuvius.  The Scotland 500.  South West Wales.  I usually travel Sunday to Wednesday, but a free weekend car hire voucher may change this for one trip.

In the end, I’ll go on Skyscanner, price up northern England to Everywhere, and see what’s cheap at short notice.  If nothing, the Celtic extremes of the U.K. might be winners.  Especially if B&B accommodation is cheap.

All assuming last week’s scan is clear.

My Final Sick Note

Over thirty years working for the same company and I didn’t come up with many sick notes.  Appendicitis.  Tonsillectomy.  Anxiety.  That’s about it.

Oh, and lung cancer with metastasis.  Let’s not forget that.  Indeed, the lung cancer sick notes have produced quite a good financial return.  And even though I’m no longer employed I picked up my final ever sick note today.  It will hopefully trigger an insurance payout of around £600.  But then that policy will be useless to me because its year in payment will have drawn to a close.  So the £9.95 a month direct debit will be cancelled.

It seems strange getting a sick note with no employer.  It also marks then end of a nice little earner and sees my unemployed and not seeking work income reduce quite significantly.

If there’s a cure, I suppose there’s a chance I’ll work again.  Although my financial plan in the case of long term survival is sound, I won’t be anywhere as near as secure as good health would have had me.  Not least because I’m currently busy throwing tens of thousands of pounds at travel.

But a cure, or long term ill health survival seems unlikely.  But not impossible.  So for now I’ll carry on earning very little and spending quite a lot.

Five Free Hotel Nights

I suppose it’s what I do these days.  Twenty nights in hotels to book and I’ve managed to get a quarter of them free.  Well, four of the freebies involved paying local sales tax because that’s how Hotels.com work.  The fifth from Hilton completely free, thanks to the obscene price they charged me in Boston generating lots of points.

All my hotels for the imminent South West USA trip are booked.

There is an art to redeeming with Hotels.com.  You receive a cash value under the guise of a free night.  If you set this against a cheaper room you loose any surplus.  In other words an £80 voucher is only worth £60 against a £60 room.  No change.  Voucher gone.

Against a more expensive room you lose the Topcashback and free night qualification that you’d have otherwise generated paying cash.  If your £80 voucher pays for an £80 room, it doesn’t matter.  Free is free.  But if you set it against a £200 room and you pay £120 cash, there’s no £7.20 Topcashback and there’s no £12 in value from one tenth of a free night accrued.

So I’ve played a careful balancing game to optimise my freebies and get slightly bigger rewards on the bits I’ve paid cash for.   Around £100 from Topcashback earned.  Another 1.5 free nights accrued replacing the four freebies I spent.  Avios accrued where I’ve paid by American Express.  And, alas, a big bill.  Despite my freebies the triple whammy of inflation, exchange rate and buying close to arrival has strangled me a little on the rooms I’ve had to pay for.

A lot of the cheaper chains are fully booked or simply no longer cheap.  One night I’ve hooked a stationery RV for half the price of a local hotel.  Another night I’m driving an extra twenty miles for a £50 saving.  But at the end I’ve splashed out on three nights in Vegas.  Relaxation being the key prior to departure.  Can you relax in Vegas?

The Mysteries of Mono Lake

I’m excited about returning to the South West USA.  Perhaps it’s a little bit strange to go back and effectively see things that I’ve seen before.

But it offers so much.  I’ve seen Mono Lake twice, but never headed to its shores.  Sat north of Death Valley and east of the Sierra Nevada I’ve simply driven past.  Once on the way to Yosemite and once heading to the rather disappointing Lake Tahoe.

This time I intend to explore it more closely.  It may not be exciting, but somehow I have it in my head that there’s something special about it.

By all accounts it’s filled by snow melt and rain.  The only run off seems to be to lubricate LA.  I’ve no idea of the route that man made pull on the resource takes but there are some bloody high mountains to get around.

The islands on the lake used to be home to rare birds.  As LA drew more water from the lake the island became conjoined.  It didn’t take the coyotes long to find the birds once a swim wasn’t required!

Whether we’ll spend ten minutes, an hour or half a day there, I don’t know.  But a key part of this trip is to try and do things a little differently to my previous visits.  And this lake will be part of it.

Forgetting to Take My Little Blue Pill

In life friends seem to come from places you frequent.  School.  Work.  Football.  Online dating sites.

My return to football after a four month gap was heralded by John bounding down the steps at Boundary Park, looking me in the eye and saying “has that shit not gone away yet?” – a clear reference to my Bell’s palsy.

He actually summed up my own level of frustration rather well.  Eleven months in an exceptionally long time to have this condition.  Three weeks, three months and nine months are, apparently, the key dates when the condition magically fixes itself overnight.

My occasional online browsings are now revealing people who’ve suffered from it for over a year.  Over a decade even.  And despite some people looking and thinking “well it’s a shame but it’s just your face” it has been debilitating.

It’s made me deaf in my right ear.  The amount of neck twisting I do to hear others is high.  The frustration of background noise making it much harder to hear somebody talk.  The reduced sound quality from my Bose headphones.  A reduction in the pleasure that music gives me.

I can only smile on the left side of my face.  While I’ve sort of mastered drinking through a straw or out of the can it’s much easier to pour into a glass and drink from the glass.  But that still offers a risk of seepage through my wobbly lips on the right side.  The beer stained tee shirt from a dribble.  The over carbonated cola from my inability to swallow as fast as before.  Interesting sensations.

Then there’s the nostrils.  The seismic shift in my face has torn my right nostril internally.  It bleeds and heals daily.  The left nostril runs unexpectedly.  Whether it’s the palsy or a side effect of the cancer medication I don’t know.  But the mucus hardens and, especially when eating, provides a route out for the runny nose that offers no sensation, so it just appears unexpectedly.  Classy in company!  I assume, back in the pre-palsy halcyon days, I was able to sense this early and subtly sniff it away.  No more.

My right eye is the biggest issue.  Sore a lot of the time.  It can find bright light, especially sun, hard to cope with.  In the early months I was prescribed eye drops which were useless.  More recently a gunge called lacrilube.  Supposedly for overnight use only, I’ve found this really useful two or three times a day.  It virtually obscures my right eye vision, but that was a rubbish eye anyway.  The relief it gives is immense.  A key side effect is that it mixes with “sleep” and every now and again leads to my eye emitting a gross yellow blob requiring careful removal with a tissue. Not fun for those who see it before I’m aware of it.

My daytime driving is nearly always done with prescription sunglasses.  Other outdoor activities benefit from a pair of shades picked up in Salem, USA.  They proved particularly useful when flying in a window seat to keep sun glare out.  The low winter sun of Chile was also invasive.

My night time routine involves surgical tape.  It took the medical profession a couple of months to advise me to tape up my eye at night.  It took me six months to realise that the tape they supplied was too narrow.  Every evening now involves applying lacrilube to my right eye, pulling down my eyelid which may or may not stick on the lube for a moment. Grabbing tape and scissors and cutting a five inch length of tape to keep my eyelid firmly down overnight.  This action reduces the risk of ulcers forming which may in turn lead to blindness.

My speech is often incomprehensible unless I hold up my lips with my right hand.  And my confidence to talk to people, order a drink etc is inhibited.  I don’t want to introduce my look to a new person.  I don’t want to risk them not understanding me. If I’m in company I prefer company to do the talking for me.

There are worse things that people suffer in life.  But Bell’s palsy is a bugger.  A reminder that any facial droop or sore eye at all means get to your GP quick.  Quick prescribing of steroids can get rid of it in weeks.

The football?  Lost 2-0.  I’m glad Vegas and Australia will allow me to miss a few games this season!

Forgetting to Take My Little Blue Pill

One a day.  Until the oncologist tells me they’re not working.  That’s where my treatment is up to.  The “not working” stage is the next step of this fateful medical journey.  Hopefully last week’s Revel infused scan won’t tell us we’re there yet.

For now, it’s one little blue afatinib tablet at 10pm every evening.  Or 5pm in Chile.  Or 3pm on Easter Island.  I tended not to change the time on my European trips.

The long haul travel has made me forgetful though.  I mean, the tablets are only keeping me alive.  It’s not as if I’ll get pregnant if I forget to take one …

The booklet that cones with the drug is fairly straight forward on forgetfulness.  Within eight hours just take one and resume your normal schedule for the subsequent pill.  More than eight hours and wait until 10pm comes around again.  There’s no mention of instant death if you get it badly wrong.

So far my forgetfulness range has only been tested to the three hour mark.  A 1am panic where I awake, turn my light on, count the days against the number of pills left in the packet and, if my reconciliation reveals I have one more than I should a quick swallow and slurp motion follows before I return to sleep.  It’s rare, but despite the high stakes, it does happen from time to time.

I’m not meant to eat in the period either side of taking it at 10pm, which doesn’t cause a  problem.  It becomes tougher in a different time zone where tea time is closer.  At least they tended to eat later in the evening in Chile.

After last night’s forgetfulness I find myself googling survival statistics for those who are a bit feckless and forget to take their drug occasionally.  There’s nothing published online that I can find.  I lie there hoping that my fairly rigid routine makes me a better survival hope, despite the twenty seven hour gap between pills I’ve just had.  Alas, Google has simply served to remind me that my wonder drug doesn’t succeed forever.

I just have to hope that my fairly rigid routine and some statistical survival generosity are on my side.

At Last My Season Starts