Seeing the World

A 9am eye appointment.  Irritating because they made me two separate eye appointments on consecutive working days.  Irritating because snow drifts still surround my car.

Regardless, to make it worse, I’ve slept properly from 8pm to around 2am.  Ok number of hours, but in the wrong time zone.  I’ve spent the last five hours drifting into semi slumber and thinking about breakfast.

Saturday’s with Chris have evolved into a Wetherspoon start of the day.  I am now that middle aged bloke who goes to the pub very early!  And I think today needs similar.

The hospital’s Costa Coffee breakfast offering nearly returned rapidly to the plate last week.  A delay for treatment and then a short drive to a disabled parking place in the town centre is needed.

Bacon sandwich and coffee.  Unlimited coffee.  Then pancakes and syrup, but no bacon.  That’s just wrong America!  £4.58.  An hour to mull over the world in my own way.  All ordered by app so I don’t even have to go to the bar.

It might not be fine dining.  But I’ve been lying here for hours thinking about it.

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I think it was trip three on my tour.  Iceland.  The northern lights failed to appear, despite attempts to find a remote parking spot to await their appearance.

Regardless, it was a special trip full of special memories.  And expensive food bills.

Despite my increased infirmity and flight ban, I am able to look back with great joy at the trips I crammed into last year.  Granted, there’s a bit of self-jealousy there in today’s context.  But absolutely no regrets about grasping that last opportunity to travel.

The bigger issue is probably my physical decline.  I could walk for miles a year ago.  Last Monday I needed a wheelchair to get around the hospital.  The fresh air was calling me then, whereas today it simply doesn’t.

It’s  not quite that the joy of travel is gone, it isn’t.  But understanding and managing my own limitations is tough.  More tough when I look back a year and, despite my death sentence having been passed, I was relatively fit, active and able.

Time can change things very suddenly.  Despite cramming in so much last year I now regret not having done even more.  That said, I chose not to have the Bell’s palsy treated privately as I’d have struggled to find time for appointments between trips.

Looking at the state of my face I should regret that too.  But I don’t.

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I think I’m in month eighteen of Bell’s palsy.  One day maybe Rachel will see my real smile.

Today I started two visits to the same hospital department.  Braving the snows.  Inconveniently, the second visit to see the consultant is Monday morning.  Hopefully a gentle melt will support such a trip.

I can’t remember the job title of the nice chap who saw me today.  But he gave positive news.  One nerve out of six is working better.  While not a solution to the dreaded palsy in its own right, perhaps there is the possibility of future improvement happening.  Update from the doctor next week!

It’s a tough one.  I assumed this distorted face would correct itself within weeks or months.  Now we’re into year two by some way.  The deafness it has caused is annoying.  The eye issues have improved a little but not righted themselves.  And while they have treatments the only cure is sit, wait and hope for a change.  The record time I’ve now been aware of someone suffering this illness is 20 years.

I’ll gladly take still having it when I’m 68 but my odds of making it there are well below 1%!

Andrew Lloyd Weber suggests taking that look off my face.  I’d love to!

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As my Bell’s palsy remains uncorrected, I have, weather permitting, two eye appointment tomorrow and Monday.  I’d prefer a more joined up approach involving one trip and two appointments, but that might be asking too much.

Anyway, I don’t really know what they’re for, besides being palsy related follow ups.  It’s good timing, because the right eye is sore again and my GP online service has blocked me accessing anymore eye gunge.  A vicious blow which will hopefully be corrected by the consultant.  I like a tube at home, in car and in Anglesey!

One of the treatments used after the twelve month mark seems to be applying a gold weight to the eyelid to aid closing.  If successful, this reduces the need for eye gunge, supports closing the eye and reduces infection risk.  I can also tell the kids to remove it on death and split the value three ways!

Quite how useful it is remains unclear.  Whether or not the NHS is ready to support this with me I don’t know.  But I’m keen to beat the blizzards to find out.

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My second chemotherapy session.  Drip plugged into my left hand and away we go.  Three hours of pretty chemo drugs going in topped up with bone strengthening zometa.

My sister successfully completing a gargantuan drive through the worst The Beast From The East had to offer.

Welcome hot drinks and biscuits served as the drugs flowed in.  Then a generous lunch of soup, ham sandwich and jelly and ice cream.  Then another warm and welcome cup of tea.

Then the inevitable happened.  Fifty year old man waning lots of liquids means an inevitable outcome.  Please can I go for a wee nursey?

Safely unplugged from the mains I took my drip to the nearest disabled loo.  After spending a minute mastering the lock, I headed to the porcelain.  It’s in the left corner.  The drip is on my left hand.  The internal pressure is building.

Somehow I strategically placed the drip behind me and took the necessary action to prepare for action rom alight sideways trajectory.  At which point I realised I couldn’t hold the appropriate item with my left hand.  Right handed is a little unstable, but here goes.  Sweet relief and unexpectedly good aim.  Then an unexpected turn of events.

A number two requirement.  Constipation from painkillers has made this a rare event of late.  But my body was giving me a clear story.  It’s time to go.  I turned around, moving the still connected drip across the floor before carefully lowering myself into position.  A short but successful event brought an internal cheer.  Then the next problem.

I am at risk of infection.  Washing my hands is important.  I’ve been quite thorough in this requirement but without ripping out the medical implements in my left hand I’m going to have to achieve a reduced version.  And don’t rub the hands too vigorously or disconnection is a real possibility!

In the end, all was achieved that needed to be achieved.  But it was bloody difficult to do and they took a good twenty minutes to plug the machine back in when I returned to my seat.

I was offered another cuppa before the drugs started flowing again!

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One of my leaving gifts from work was the chance to feed the tigers at Longleat Safari Park.  The voucher expires in three months and finally dates seem to have come together where Rachel can join me for the trip.

I’ve identified a four day trip, three hotels, maximising hot tub availability and utilising points and freebies from IHG, Hilton and Hotels.com.  Value for money all the way!

Oddly, I hadn’t read the small print on the voucher.  I’m meant to give the park eight weeks notice of arrival!  Does that rule out March 12th?  Hope not!  Slight concern that there’s a “mobility requirement” – presumably I need to be able to run.  Ring the VIP helpline.  No reply.  Email the VIP email.  No answer within four hours.  I have played the “C” card so let’s see what they can come up with.

I think this is a sign that I’m feeling better.  I hope so.

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