Seeing the World

Six weeks of chemotherapy and my weight loss now stands at 12lbs.  If anybody wants to know how to lose 2lb a week, I’ve mastered it!

Not that this is meant to happen.  I’m meant to maintain weight and muscle during the treatment.  Quite how I’m meant to do this baffles me.  Plates of food don’t look appealing.  Big portions are an instant turn off.  Dessert still looks good, but as a muscle enhancing measure I’m not convinced it’s a winner.

My ability to walk long distances desserted me in Chile last year.  The pelvic damage.  Since that moment I dread to think what has happened to my muscles that help me walk.  Underused is an understatement.  Chris gets sent to refill my Wetherspoons coffee to save me the effort and occasional pain.  Rachel tends to carry my bag for me.  It’s a good job my solo travel days are over, as lumping a suitcase around is beyond me!

My efforts to try and counter the weight reduction aren’t exactly healthy.  Chocolate. Bacon.  Desserts.  Sugar in coffee instead of sugarless tea.  All techniques that are failing.  All techniques that aren’t exactly healthy!

It’s a strange paradox.  And I’m not sure I care too much about it at present.

Please make a much needed donation to Roy Castle Lung Cancer Foundation

My approach to a terminal diagnosis has been one of pragmatic acceptance.

What do I want to do before i die?  How do I make sure the kids are looked after?  How do I make the best of things?

I’d like to think, as far as possible, I’ve approached bad news positively.  We all die at some point.  I’d rather have a bit longer than the mortality charts show.  But get the best out of it and be grateful I won’t get too old and suffer in different ways that others do.

Still, today’s visit to Oncobabe had me fearing bad news, possibly for the first time.  I’m quite enjoying still being alive.  A call asking me to get an X-Ray as I shovelled down a hospital canteen breakfast didn’t help allay my nervousness.  I procrastinated over my coffee.

Xray done and I met up with my sister.  She’s been a rock.  Into the Onco wing and onto the scales.  I’m losing two pounds a week on chemotherapy.  Not ideal apparently, but no lectures from staff.

Oncobabe quizzes me around the reaction to treatment.  Constipation remains my key frustration, although getting myself fit to drive in the days after treatment hasn’t been easy.  Spaced out Dave heading your way might not be a good thing!

We then discuss clinical trials.  Just before the appointment my sister took a call from the Matrix Trial in Leeds.  My biopsy sample from November 2016 is useless.  Oncobabe was told a month ago.  I held back my anger at the lack of communication as she explained there’s no point giving a new sample until there’s an up to date scan and chemotherapy ends.

Better news that the Trial will perform any new biopsy if they want you.  That wasn’t the case a few weeks ago.  A discussion around other trials at Christie Hospital and an apparent willingness to refer once they give up on chemotherapy pleased me.

Then the bad news.  My X-ray showed a spread of cancer within the lung.  It’s always stayed nice and compact up to now.  Just attacking me outside of the lung.  Suddenly there’s a change.  Not significant yet, but bigger.  News that hits me quite hard, but at the same time it feels like getting half a step closer to the various trials.

I suppose with that X-ray outcome my initial fear is justified.  But somehow, the Trials seems to be more welcoming once my NHS treatments are exhausted.

Maybe it’s a good news day after all.  While accepting the near certainty of my early demise, little crumbs of hope still exist.  I’ll focus on those.

Please support Roy Castle Lung Cancer Foundation

They said the wind chill made temperatures at Bounary Park minus eight yesterday.  Lordy did my right eye know about it.  The cold bit into my Bell’s palsy affected cornea causing significant pain, mitigated only slightly by me covering the eye with my right hand.

Given the awful quality of the game, in particular the dreadful contribution of Oldham’s players, reduced vision was probably a good thing.

Two goalkeeping disasters gave Portsmouth a half time lead that they held to the end.  At least I believe they did.  I broke my rule of never leave early by exiting when the fourth official indicated five minutes injury time.

There was hope of an abandonment mid way through the second half.  A blizzard made it impossible to see the ball.  The referee eventually paused the game, but, alas, conditions improved and the game recommenced.  Still awful to watch.  Even with just one eye.

The hour drive home was warmed by the effective heating on the BMW.  But of all things, my knees remained ice cold into the early hours.  Maybe I need a tartan blanket for match day.

Please donate to my Roy Castle Lung Cancer Foundation appeal

Having cancer that you know will return is a troublesome thing.  Paranoia can set in.  Every ache or pain anywhere in your body immediately raises fears that it’s back or its spread.  Sometimes I need to accept I’m a man of fifty and aches and pains are inevitable.  But I’ve known with previous treatments when the game is up long before they’ve got me to a scan.

Today, in the area near my hip/right buttock that benefited from radiotherapy a few weeks back, I now have a tickling feeling.  It could be nothing.  But it feels remarkably similar to what preceded previous tumour pains that I’ve felt in the same area.

If it shows as evil on my next scan, chemotherapy session four will be the end of my NHS treatment.  Other than painkiller prescriptions.  The tickle will turn to pain.  My appetite will reduce and, sooner or later, I’m done for.  The pace at which lung cancer spreads and kills suggests buying an Oldham Athletic season ticket for 2018/19 would be pointless.

It all feels a little too close now.  When I had a range of drugs to work through it was easier to handle.  As those options expire I realise I’m very close to staring death in the face.  10% chance of making it to the end of 2021.  I still don’t feel fear.  Just love for those around me.  I still hope for the miracle of a drug trial keeping me going.

I’ve never wanted to be an old man.  But I definitely want to get well past this half century.  Another year saves the kids £100k in inheritance tax.  Surely I can retain an acceptable quality of life to get past that curse.  Please.

Over £3,000 raised for Roy Castle Lung Cancer Foundation

I think they started when the chemo started.  A knock out blow if you like.  I found myself turning up for tea in my BA First Class pyjamas more days than not.

Prior to that, even if I stayed in all day I’d shower and dress myself.  But at the moment I don’t.  I sort out breakfast, lie back on the bed and my day moves between internet browsing, Star Trek watching and little bits of sleep.

It’s time to socialise a bit more.  Get myself back out for lunches etc.  Raise my standards a little!  Maximise whatever time I have left.  Once the chemotherapy stops I’m out of treatments unless the drug trials come up good.

The lung cancer mortality curve tells me I’ll be lucky to make next year.  Time to start making the best of what good health I’ve got again.

Roy Castle Lung Cancer Foundation whip round

It’s a subject I’ve touched on a few times.  Apologies for the inappropriate picture but it does rather highlight some of my own thinking.

For clarity, I walk with a stick.  My cancer has eaten away at hips and pelvis turning a fit man into a slow moving chap with a limp.  It’s not a disaster, but it does highlight a different world to me that I’d never envisaged previously.

The recent weekend away was perfect at highlighting a number of failings in the world.

The good news is I have a blue disabled badge.  No wheelchair, just a slow moving man who takes a little time to get out of his car and needs a little space to avoid swinging his door into the neighbouring car as he struggles out of the comfort of the seat.

Service station one on our travels kicked off the issues.  Car park spaces for the disabled should have additional room on both sides of the car.  Who knows which side the disabled person will be sat on.  Planners keen to save space had decided to only create extra space on one side of each car.  The only available space for me meant little room to exit from the driver side.  A real threat to the bodywork of the nice shiny car next to me.

Still, I can work my way over to the disabled loo in the service station.  It’s on the ground floor right at the back.  An irritatingly long walk.  The door is locked and a sign says go to WH Smith to get access.  The idea of saying to a young member of staff that I need a wee wee and would like to borrow a key fob to unlock the lav door wasn’t appealing.  Even less so when it became clear that I’d have to push in to a long queue and demand attention quite publicly.

I chose to head upstairs to the main toilets.  Two flights of stairs.  Numerous cublicles available.  None with handles to help me steady myself.  I’ll manage, just, but others might not.  Interesting that the communal sink that is common in many service stations seemed good at throwing water all over the floor.  Don’t mind me if I slip and break my pelvis!

Back downstairs.  Stick in one hand.  Clinging onto the handrail with the other.  Somebody coming the other way stops and stares at me.  I look at my stick, look at them and, eventually, they walk round me.  Hope I wasn’t too much trouble for them.

Hotel one.  A single disabled parking space.  Taken.  An unimaginably difficult area to manoeuvre in.  Twisting round to check for plant pots and stone walls that seemed to litter the area is not as easy as it once was.  Petrol fumes pumped into the atmosphere as we turned around and headed back to the main parking area 150 yards away.

A bathroom with a walk in shower.  Excellent you’d think?  Pretty much so, except for a lack of handles to keep me secure and a lack of shower mat.  Serious extra care needed to ensure I don’t slip.  Still, hotel two forced me to climb into the bath tub to shower.  My right leg just about managed to lift itself in, but it was tough.  A handle, but low down at bath level.  Nothing to cling onto when stood up.

Lets get a bottle of wine at Morrisons.  Who make sure their parent and child spaces are right next to the front door.  Disabled?  Great, you guys go and park in that section over there and walk the length of the store back to the entrance.  You’re welcome.  You can see their store designers really gave some thought to it.  Not.

Granted, I’m not in a wheelchair and life would be much more of a struggle if I was.  But the more I see, the more it becomes obvious that those employed to “see the journey through the eyes of the disabled” really don’t have a clue.

Roy Castle Lung Cancer Foundation collection

October 2017 brought me bad news.  A flight ban from Oncobabe meaning my priority trip of seeing The Ashes was off.  The Credit Crunch had wiped out my fund to do this eight years earlier.  Now lung cancer had taken it away from me after I’d booked flights, tickets and accommodation.

Refunds were arranged bit by bit.  I gifted my Adelaide tickets to my Airbnb landlord.  A friend down under persuaded Qantas to refund a non-refundable ticket in full.  Three credit cards suddenly found themselves with significant credit balances.

Five months on, I’ve now managed to spend all the refund money.  Somewhere in excess of £3,000.  I’m trying to work out what on!  Petrol, eating out, occasional hotels and what?   The odd away match I suppose.

My income is only about £900 a month.  Rent £400.  Then another £600 on cards for routine expenses.  Not a sustainable spending model.

Then again, stage four lung cancer isn’t exactly a sustainable illness.  My finances will survive for now.

I’m raising money for Roy Castle Lung Cancer Foundation – all support big or small welcome