Seeing the World

Another medical phone call today.  Cancer nursey telling me I’ll be seeing a radiotherapist in the next couple of weeks.

Now I’m a little ignorant about what radiotherapy achieves.  I wasn’t the most attentive when it came to the sciences.  By all accounts they fire X-rays at my cancer and that reduces or destroys the cell leaving me in more comfort.  As I’m so riddled the disease it seems they can’t zap every cell without turning me into a glowing corpse.

And while my pain is usually relatively mild, anything that promises to reduce current or future pain will always be welcome, as I’m a bit soft.

Im assuming they’ll point their zapper at my pelvis.  Doubtless Mr Radiotherpist (Not  Zapperbabe) will educate me further when we meet.

Meanwhile, here’s some Blondie.  Seems appropriate in a mellow kinda way.

For fifteen months I’ve been faced with the minor inconvenience of stage four lung cancer and certain death.  I’ve been able to take certain steps to mitigate that such as turning a worthless pension into a large amount of cash, travel extensively for a period and quit work, banking a pay off that noted 31 years of contribution.

At the same time as the cancer was diagnosed my eye went sore and my face slipped.  Bell’s palsy.  This condition I mitigate in different ways.  Applying lotion to my sore eye.  Taping over the eye at night to stop it drying out and getting infected.  Holding the right side of my lip up during conversation to ensure I can speak without a lisp.  Not quite as easy to take positive steps over compared to my death sentence.

Last May I also went deaf in the right ear.  Apparently a side effect of the Bell’s palsy. Facial nerves simply not playing the game they’re meant to play.  In good news I get to see a hearing specialist in three weeks.  I probably should have sought out a BUPA referral in the days before my employment ended.

In less good news I appear to be suffering from tinnitus.  For about 50% of the time it feels like there’s a cricket chirping away in that right ear.  It’s certainly not as severe as some of the cases of tinnitus Google has led me to online, but it is real and a tad irritating.

And while it’s likely to be linked to the Bell’s palsy it’s another irritant on the list of ailments nibbling away at me.

Lung cancer.  Pain, restricted mobility, now need a walking stick.  But on the bright side, no cough.  Just a bit of dying to come at the end.

Constipation.  Pain medication bungs me up.  I tell you, that’s no fun!  Sachets of medication to loosen up mean I should never be too far from the porcelain.

Bels palsy.  Sore eye.  Nosebleeds.  Wonky face.  Deafness.  Tinnitus.  At least the wrinkles have gone on half my face!

Ingoing toenails.  At least one is now fixed.

Its not gee not  great year health wise has it?

The Slightly Nutty Survivalist

The drive from Oldham to Halifax is fairly short.  But it takes you over Britain’s highest motorway.  Indeed, junction 22 has its own microclimate and has been known to suffer heavy snowfall when the surrounding areas are enjoying sunshine.

Over a decade ago my employment took me out of the glorious green valleys of Lancashire and awarded a daily trip to the badlands of West Yorkshire.

Despite an estimated drive time of just 45 minutes I had a fear of being stuck in snow in the winter months.  A fear I’ve been reminded of by last night’s gridlock in Halifax and the more severe scenes on the M74 in Scotland.

So I packed a survival bag and bought a clever folding spade for clearing snow.  Not quite a shot gun, ammunition, a camping stove and some beans.  But a bag containing a change of clothes, a towel and a washbag.  I also tend to carry a little bottled water.

In my head, I had an image of being stuck in extreme conditions and needing extra clothes as the snow fell inch on inch blocking my car in and stopping me heating it by covering the exhaust.

The bag still remains in my car today.  Perhaps it might yet be needed before the inevitable happens.  After all, it’s a drive I repeat most weekends, albeit starting on the Yorkshire side of the hills.

A single pair of thick socks.  A change of underwear to an ancient pair with failung elastic.  I’m not sure I’m mobile enough these days to achieve changing my undies in the confined space of the Beamer.  A rather dreadful 1990s Patrick branded tracksuit.  I think I bought it with the intention of playing six a side football every week.  And used it once.  When mountain rescue dig me out of a snow drift they’re in for a fashion extravaganza!

A hat and gloves too.  Essentials in any cold conditions.  The hat a Lancasjire County Cricket club offering picked up for free at a twenty twenty match.

Two items which seem to have vanished are newspaper and a giant bar of Cadbury Whole nut.  The former to be used for insulating windows.  The latter being the ideal survival food for energy.

While I’m sure I’d have found it a hellish experience on the M74, there’s just a little bit of me that would have enjoyed it.  As long as I had the chocolate.

Meanwhile I need a melt locally.  I need to get to hospital appointments in Huddersfield and Leeds on Thursday and Friday and the prospect of more snow isn’t impressing me.

When Twitter Makes Your Day

I wouldn’t describe myself as particularly active on Twitter.  I post this blog there.  Exchange the occasional conversation with a friend.  Talk some rubbish about Oldham Athletic and occasionally dip my toe in to political debate before I realise I’m talking to myself.

I don’t particularly do celebrity.  Unless you call following the utterances of average League One footballers celebrity.  But I now have my second big name follower.

The first is Nils Lofgren.  Musician.  E Street band guitarist.  Wearer of unusual hats on stage.  Perhaps little known to those who don’t pay Bruce Sprungsteen much attention.

Today Michael Vaughan stepped forwards.  Ashes winning England cricket captain.  I saw him play live occasionally, my best memory being when he took a rare go at bowling and took four Sri Lankan wickets in a one day international at Old Trafford.

While Joe Root struggles to convert his half centuries into centuries as today’s England captain I used to find myself frustrated at Vaughan struggling to convert scores of 190+ into double centuries!  Oh what we’d give for a cricketer with his levels of concentration and tactical nouse today!

It’s a fleeting interaction on social media.  But just a small acknowledgement from somebody that I admire greatly that even included a message referring to me as a legend.  And somehow it means a lot to me.

Chris and Matt have met Vaughan before.  A few summers back he rocked up with a crew of England has beens at Royton Cricket Club to play out an entertaining evening against the local cricket club.  The photo above showing Chris enjoying the moment.

A few years earlier at a test match against the West Indies I’d handed nine year old Chris a large bank note to go and buy a hat to protect himself against a rare Old Trafford sun from the club shop.  It was his first cricket match.  He returned sporting an identical one to that worn in the field by Michael Vaughan that day.  A tough day of trying, unsuccessfully, to get Chanderpaul out,  Match drawn.  But Chris had seen Vaughan, Panesar and umpire Billy Bowden that day.   Even Pieterson had a bowl.

Then as the interaction triggered the associated memories, the phone rang.  St James’ Hospital in Leeds confirming my appointment.  Reality of the current day restored.

Giving It All Away

The failure of a fax to either be sent, or be read on receipt, rather annoyed he last week.  As I’ve hit the “chemotherapy then die” point of conventional treatment for my stage four lung cancer the last hope of joining the Matrix Trial – a significant drug company sponsored clinical trial – was rather important to me.  The fax fail not fun given the quick death alternative.

As I went into a resigned acceptance of my fate, including a relaxing pyjama day on Friday, my sister hit the phones.  Chased people around.  Got people talking to each other. Rattled some cages.  Stuff I was never particularly good at in my working life.  Stuff I’d have just accepted as inevitable if I’d been making those calls myself.

But she’s hit the jackpot.  Or at least got me an appointment at St Jimmy’s in Leeds on Friday with the top onco person there.  Whether she’s a babe or not is something to find out.

It does seem from a conversation between this doctor and my cancer nurse that there is still a preference for me to go through chemotherapy before experimental drugs are brought into play.

But it’s a foot in the door.  Granted, they can still reject me from the trial for any one of numerous reasons.  But I’m on their radar and there’s a little bit of hope.  Perhaps I can be among a group of patients who show significant recovery.  If not, it’d be nice to croak knowing I’ve contributed a statistic to a trial where some people are doing well.

It’s a result.  A bit of good news.  There are no guarantees.  Even if accepted for the trial the chance of a significant extension to reasonably healthy life is slim.  But I’d love to be a ground-breaking medical miracle.

That Familiar Feeling of a Sore Buttock

The second half of 2016 was when it was most severe.  More pain than I’ve ever experienced.  Back surgery strengthened my spine and eased it a little.  But it wasn’t until afatinib was prescribed in December 2016 that the pain and associated sciatica went away.

Unil June 2017.  When niggling buttock pain returned to my life.  Eventually they scanned it and told me the good times of life extension courtesy of afatinib were over.  During that period I struggled a little with it and my appetite faded dramatically in September 2017.  Steak served in the American South West appeared in front of me and I barely touched it.

October 2017 brought osimertinib into my life.  Appetite restored.  Sore buttock improved.  Alas, my ability to see off wonder drugs at pace has repeated itself.  As Oncobabe gave me the disastrous scan results I entered a short period of denial.  I challenged her on my most recent pain and how it had gone away – surely the osimertinib did that.  I pondered the timescale of damage to my second rib that she announced.  Did that happen in the first week of osimertinib treatment?  If so, perhaps it’s not an example of the new drug failing, but the old.

Frustration too that the scan instructions never said to look at my pelvis area.  I had to push for that.  Progression of the disease highlighted only because I made them take a photo.  Irritation, not that it changes anything.

And then this morning.  Any fading thoughts of denying expert medical opinion are gone.  That buttock soreness is back.  It’s the same as it was.  There is no doubt in my mind that I’m feeling the same thing I felt before.  And I know it’s a tumour.  I know it’s what will probably kill me.  This year.

Still, at least the cancer in my lungs remains small.  That’s not changed at all since diagnosis.  Oncobabe almost smiled when she told me this, before introducing the “osimertinib is not working” news.

I have to accept that the vicious spread of my disease is as strong as it gets.  And my relative youth is no defence.  Chemotherapy only buys a few extra minutes.  Matrix trials, who knows?  But even with those I have an assumption that the evil within will see off any good effects faster than average.

Burning the Avios

This time last year, the best estimate for my life expectancy had moved from six months to a more acceptable thirty two months, thanks to the drug afatinib being prescribed.

Cue lots of short trips to Europe and big trip planning.

The first big trip booked was first class from Manchester to Boston via Heathrow.  Paid for with my decent pile of Avios.  At the time I didn’t expect to accrue any more. We flew in June and soaked up an excellent service, the comfort of the top airport lounges as we awaited flights and a massage at Heathrow too.

Seven months later and I have accrued another 145,000 Avios in my British Airways account and 32,000 Avios from being bored and completing surveys in an Avios.com account.

Those 32,000 miles have created a problem.  Ideally I’d have booked four return flights from London to Europe with them.  But 1) I don’t want to fly from London; 2) my chemotherapy won’t have me flying again any time soon and 3) I am not convinced I want to fly anywhere while I feel this weak.

Worse, those 32,000 Avios are in a family account I created nearly a decade ago.  As such, I can’t merge the points with the other 145,000 Avios in my BA account.

Given my life expectancy situation, I needed to spend these 32,000 Avios.  And the best value of European flights or long haul business class flights is out of reach.

So, despite not being much of a drinker, I’ve blown these points on a dozen bottles of posh looking Prosecco and a special gift/thank you for my landlord which I’ll assume my sister will pass on once I’ve passed on.

The Prosecco will most likely be consumed 75% by Rachel.  I’ll mop up the rest.  We’re in Anglesey for a week soon and the idea of sitting in the hot tub, sipping fizzy wine and chilling seems like a fitting way to prepare my body for radiotherapy and chemotherapy.

It’s an inefficient use of the points.  But I’ve found a way that puts the effort of accruing them to good use for my circumstances and means I’ll get some pleasure for them.

The plan is still to ensure Chris ends up with the rest!

Shaking the Clinical Trials Tree – Matrix