Seeing the World

At some point in the last few years, long before I was diagnosed, I changed my approach to charitable giving.  I’d always found the ongoing series of Justgiving emails in the workplace an irritant.  To be ignored.

And then I started donating.  Little and often.  Anonymous amounts.  Nothing life changing but something that could help boost an individual fund raising effort.

I once got a call thanking me for my three figure donation.  That was embarrassing as I had to admit to a smaller sum going into the pot.  Another donor had made the more generous contribution.

Then comes my diagnosis.  And suddenly I’m keen to support charities that may help me.  Small and often still being my donation amount.  But this time targeted.

And my two charities of choice,  and recipients of a monthly direct debit, are Roy Castle Lung Cancer Centre and MacMillan nurses.

It was passive smoking that did for Roy Castle, the bloke who used to present Record Breakers on the telly.  It was also his birthday yesterday.  Whereas smoking is nothing to do with my lung cancer.  I find myself, just occasionally, irritated by their publicity and campaigns that focus so much on smoking, stopping and testing smokers for early signs of lung cancer (catch it early, cure it).

But that’s just an in built selfishness on my part.  I want them to focus on my specific gene mutation and managing the spread of my illness.  They were very good when I (or rather my sister) approached them for assistance in how to manage my side effects.  Actually taking the time to ring the drug company and come back with an answer to a question they’d not encountered before.

MacMillan nurses were there in the early days of my NHS treatment.  Documenting meetings (I assume they were making sure it was clear I knew I was done for, with no ambiguity!).  More importantly they did the paperwork to ensure I receive the modest state benefits I’m entitled to.  It’s money I use to pay for foot care at the moment.  As I’m just about unable to cut my own toe nails I’m willingly handing over cash each month for private podiatry.

As my treatment has become a “success”, the nurses have vanished into the background.  They no longer witness my consultations with Oncobabe.  If one of them reappears on Monday I’ll fear the worst!

Ultimately, I support these two organisations for absolutely selfish reasons.  One might come up with magical research that cures me, or buys me an extra decade of life.  The other will literally hold my hand, straighten my pillows and bring me water as I fade out of this life, pleased with who I am, frustrated by mistakes I made and happy that my kids are strong enough to lead their own lives.

Buying a Foot Spa

Everything that can go wrong will go wrong.  Bell’s palsy.  Aches and pains, including sciatica in the right leg.  Nose bleeds.  Sore eye.  Oldham bottom of the league. Oh, and terminal lung cancer.

Added to these is ingrowing toe nail.  My podiatrist didn’t tell me this is what I had until today.  Weeks after his practice partner had chopped away a good third of my nail of the big toe on my right foot.

Today, as I presented with the scabbed up remains of my daily toe bleed he confirmed from his notes the exact problem.  New one on me!  After treating it and covering the wound he insisted I return next week.  Until then, keep the toe covered until Saturday and then salt bath it daily.

Not wishing to assume the obvious I asked what a salt bath was.  His explanation sounded more like a “salt washing up bowl” but I decided not to challenge him on the name.  Instead, I’m planning a Saturday morning visit to Argos to spend somewhere in the region of £40 on a foot spa.

It’s almost exciting!

My Discomfort Continues

While I’ve been pragmatic about my cancer, it is what it is after all, it’s hard not to be frustrated that is struck at about the same time I was at my fittest.

I’d shifted seven stone over eighteen months.  A solo visit to Madrid last year found me almost floating around that marvellous city, eating up the miles.  And then the attack on my bones began.

Today I wake up with slightly less pain than yesterday, having enjoyed ten hours sleep.  But my four drug pain-killer combi had been used in full force.  Along with an attempT to stay still to minimise twists on whatever’s triggering the pain inside.

A call to the hospital says max out your painkillers and we’ll see you Monday.  I try to avoid tramadol and amytriptoline during the daytime as I don’t want to sleep or feel like a zombie.  So paracetamol and ibuprofen it is.  The latter may get replaced by my naproxen in four hours.

The reality is I can hardly move unless I’m drugged up.  Hopefully my visit to the podiatrist this afternoon will coincide with a parking space right outside!  Walking isn’t fun.

For now though, all I can do is medicate and suffer.  And hope it just fixes itself within a few days.  I’d rather be in good nick for those Vegas flights.

Alcatraz Booked

My previous visit to San Francisco lasted five hours.  Drive in.  Park up.  Look at Pier 39.  Buy a Golden Gate Bridge souvenir.  Admire a partial eclipse of the sun.  Drive south towards the Pacific Coast Highway and the hell hole that is Los Angeles.

While limited time was a result of only having twelve days to complete a wide loop from Phoenix Airport, I’ve always had regrets that not enough time was given to San Francisco.

Those five hours revealed a city that felt chilled out to the core.  A band playing on the sea front.  People enjoying sea food next to the bay.  Seals parking themselves on disused docking areas.

I always knew I should go back.  As things like drive on the bridge and visiting Alcatraz weren’t options for our limited time window previously.

And that home of folklore, bird men, escapes and now wildlife has been booked.  $90 for two tickets seems steep, but Alcatraz will be visited, enjoyed and ticked off.  A rare nod to something man built.

Alas, the afternoon timing is a bit of a nuisance.  I think darkness will greet us at our subsequent destination.  Perhaps coinciding with a thought that I still won’t have done justice to San Francisco.

Exercise or Rest?

My mobility remains impaired.  And it’s frustrating.

Yesterday my right hamstring was tight.  The good news is that’s cleared up.  But moderate sciatic pain has been throbbing away in my knee and my ankle.

My hips hurt a little.  And an age old pain in the right buttock has returned.  Presumably a nerve trapped in my cancer ravaged bones.

It’s gentle throbs rather than excruciating agony.  But it’s annoying.  And with only eight days left until USA South West I need to shift it.

My theory yesterday was that walking is good.  Today, after returning from lunch and struggling, that theory has changed to minimum activity and rest.  Unfortunately I’ve no idea what the right thing to do is.  But if moving hurts I’m assuming not being in pain is good for my health.

Meanwhile, naproxen, paracetamol and tramadol rattle again.  Not ideal.

Surgically Removing My Right Eye

Angelina Jolie chose to have bits of herself surgically removed to reduce a genetic cancer risk that she faced.

As I lay in bed last night, watching Jean-Luc Picard on Netflix, the Bell’s palsy impact on my right eye worsened.  The eye won’t blink.  Pain comes and goes, usually triggered by bright light.  Last night it convinced me to suspend activity on the Starship Enterprise as the iPad lighting, usually fine, had become intolerable.

I applied my lacrilube gel but the pain persisted.  So I taped down the eye and attempted an early night.

Alas, my right buttock twinge kept happening, regardless of my sleeping position, rendering early sleep impossible.  Despite a maximum naproxen dose earlier.  And with that keeping me awake I became aware of the eye discomfort again.

I use the word discomfort because it’s nothing like the intense pain I felt as my lung cancer attacked my bones last year.  But it’s an unpleasant sensation nonetheless.

And then a plan entered my head.  My right eye has always been my weak eye.  In normal times I could close it and see virtually the same amount of the world out of the left eye.  In other words, my right eye has always been a bit rubbish and I can operate just as effectively with one eye.

Now the plan.  I’m resigned to my Bell’s palsy being here forever.  It hurts my right eye.  My right eye is rubbish when healthy and obscured by gel when unhealthy.  Therefore there’s a lot of sense to the idea of removing my right eye.

I’m not sure the NHS will entertain the idea.  And my BUPA expired with my employment.  But the idea seems to make a lot of sense right now as, despite closed blinds and no lights on, the eye is suffering a lot with what light there is.

If Angelina can remove things, why not me?

Sedona, Arizona

On my first trip to the South West USA, I made the executive decision to drive my then wife and Chris through Sedona.

It was our first experience of this part of the world and lasted less than an hour.  The big name attractions formed the route.  Sedona was very much an afterthought.

But that hour was exceptional, especially if you like impressive rock formations.  Even without stopping the car a little piece of me thought going back should happen.

And I forgot.  My route plan after leaving Grand Canyon Village on next week’s trip didn’t think to head that little bit further south to investigate Sedona in the way it deserves.

There will be a morning on this trip where I wake up and ask my companion Rachel how she’s feeling.  Sedona may justify an extra two hours of driving on a day where several more are already scheduled to get us to our planned overnight stop.  Hopefully I’ll be feeling strong enough to take it on.

If it doesn’t happen, there’ll be a big element of regret.

Oh How I Yearn For a Handrail

I’m less steady on my feet than I used to be.  Some days are worse than others.  Some moments are fine, others I worry about.  Suddenly I have an insight into the life of the partially disabled that I never really considered before.

My hotel bath nightmare on Wimbledon finals weekend was a reminder of how little standard facilities account for infirmity in the elderly and younger disabled.

The picture above shows a modern football stand.  Granted, the orange seats are a bit garish, but this is a facility built in recent years, presumably taking into account the most up to date regulations to support the disabled.  Blackpool FC.

The away stand behind the goal is called the Mortensen Stand.  Named after the only player to score a hat trick in an FA Cup Final.  So impressed were the people with his achievement they named the final “The Matthews Final”.  Presumably Sir Stanley laid on the goals that Mortensen scored that say in 1953.

My gripe with the stand design is simple.  You enter at the bottom and have to walk up the steps to get a decent view of the game.  In my case, height was particularly important to get my right eye out of direct sunlight.  I wasn’t too bad heading up the stairs and we had a great view of the rather depressing afternoon’s action.

But as the final whistle blew time on yet another Oldham defeat I lifted myself out of the seat (which had provided excellent leg room) and commenced the walk down the stairs to the exit.

The stairway is not particularly steep.  But a mix of my instability and decent sized Oldham following crowded around me made me feel very uncomfortable about my safety.  There’s no handrail.  A simple concept.  As we slowly shuffled down to the exit Chris realised my discomfort and stood in front of me, in part to clear the way.  Had there been a handrail I’d have felt a whole lot safer and a whole lot happier.

A year or so ago I wouldn’t have given the slightest consideration to this.  I’m not sure I’d have cared about the discomfort I felt yesterday being inflicted on others.  It just wasn’t an issue I could understand.

My world has changed a bit.  And suddenly I see the practical help for helping the infirm but willing to get around under their own steam.  I think society, and building regulations, need to give more thought to the issue.  My quality of life would become less tolerable if I found myself unable to watch my football because of silly things like a lack of railings to support me on a two minute descent to/from an exit.

A Day at the Seaside, Memories of Cantona and 1,000 Avios

When the football fixtures came out in June the drinking Oldham Athletic supporter spotted bank holiday weekend, August, Blackpool away.  It was the talk of the town.  Well, talk of the hashtag #oafc anyway.

Hope for the new season and a big Lancashire derby early doors.  Played four lost four meant a little of that excitement has vanished.

As a less committed drinker I thought “how easy is disabled parking in that area?” – a sign of my inability to get excited at alcoholic frolics these days.

Something more exciting popped up on my two American Express cards.  A spend £20 for 500 Avios offer.  Limited retailers including Shell, so with a near empty fuel tank and a qualifying Shell petrol station down the road I fulfilled the requirements of the offer using my Platinum AMEX.  The extra 3p a litre on the fuel price compared to Tesco costing me 51p.  The Avios having a value between £2.75 and £25 depending on my ability to use them smartly.  Several hours later I doubled up with my BA AMEX card.  Life is good!

It is a long time since I got a buzz out of visiting Blackpool.  Two beers for less than a fiver lifted my mood.  Entering the modern ground that bears no resemblance to the 1980s death trap I recall from my younger years, this felt almost clinical.  Modern stands replacing an awful place to watch football.

In fact it remained a death trap terrace in the late 1980s or early 1990s when I visited to see Cantona play.  He was awful.  Eric’s brother Joel turning out for Stockport wasn’t close to matching the ability of the Manchester United legend.  I don’t think Eric ever got to Bloomfield Road.  He’s not missed much.

The result today’s?  2-1 to Blackpool.  Played five, lost five.  Never mind, it’s the Checkatrade Trophy next week … I know.  I know.

My Fake Limp