Seeing the World

Life has served up a fantastic opportunity to travel

My Programmed Death Ligand (PDL)

I think it’s fair to say, even with reading, that my understanding of this term is limited. It seems to be a measure of responsiveness to treatments. PDL -1 very bad. PDL +1 merely a bit desperate but not quite as bad.

My winter 2016 biopsy scores me a PDL -1. This probably explains why I’ve successfully seen off two major treatments in short time. In other words, I’ve been doomed to quicker failure  all along.

Still, today was Oncobabe day and an early appointment. A slight shock when Dr Notoncobabe appeared, telling us that the scan results weren’t back from last Monday’s scan. An added shock that I have a 1pm appointment tomorrow for possible chemotherapy that may not even happen.  Oncobabe it seems was busy chasing up the scan.  Or hiding from a face to face complaint.

After Dr Notoncobabe assessing my leg movement and dodgy toes, I brought up the subject of the new treatment Atezolizumab which NICE have approved for use in the NHS.  My sister had kindly printed off a twenty page report that, in summary, says once chemotherapy fails they should get me on this drug.  Even with a minus one programmed death ligune.  Dr Notoncobabe said she’d take the matter up with Oncobabe.  She didn’t admit to not being familiar with the latest progression in NHS stage four lung cancer treatment.

The meeting drew to a close.  Knowing I have to return tomorrow afternoon is an irritation.  I still have big doubts about the effectiveness of my chemotherapy although the more severe pain I’ve been feeling has eased.

I think, if the local doctors know how, a new treatment buying a few more months might be close.  Perhaps a new biopsy to ease access to drug trials slightly further down the line could happen too.

For now, I’m still in limbo.  And while I felt quite energetic earlier, I’m exhausted by lunch time!

Radiotherapy Made Me Pain Free For a Couple of Months – But Now I’m Back on the Tramadol

My assumption is, when last Monday’s scan results are revealed, I’ll get the news that the chemotherapy has failed.

It was only ever a desperation effort to give me a few extra months anyway.  And the fact that my lower back is only giving me minimal support and I have a new pain that feels very much like previous tumour pain tells its own story.

Recent nights have involved taking tramadol.  Last night progressed to a second dose.  My 4am visit proved a struggle getting out of bed as the pain hit.  And hurt.

The good news is that the drugs are relatively effective if I lie still.  It’s moving that causes the problems!  And the last few days have seen me become very feeble as I try to move around the house.  Wednesday night football saw me struggle more with a short route from yellow line to seat in the ground as the masses rushed beyond me, occasionally knocking me slightly.

I have felt more severe pain over the months I’ve had this disease.  But my body has probably never been feebler.

Oncobabe is on holiday this week.  I have a 9am appointment Monday for her to tell me that the scan results aren’t available.  I’ll sort out blood tests for her today, ahead of the next Chemo which I’m unlikely to have.  Monday can get a discussion about the latest life extending drug that NICE have approved.  Then maybe next week I can progress to it before my disease progresses further.  Or will I need a biopsy?

Anything to zap my latest tumour would be quite appreciated.  I believe tramadol adds to constipation, so getting off that ASAP will be welcome!

Confirmation that I “have a profound hearing loss” in my right ear

I think it’s about twenty weeks since I first advised my GP that I’m stone deaf in my right ear.  I’d thought it would go away when the Bell’s palsy departs.  Alas, neither have happened.

A couple of weeks back, I attended an audiologist meeting.  That report seems to have got back to my specialist who has stunned me with a letter confirming my right ear is deaf as a post.  I’m fairly sure I’d already mentioned this to him.

My medical treatment has involved numerous hospitals.  Two in Leeds..  Yorkshire Clinic.   Halifax.  Huddersfield.  Now a new one.  The deaf man unit at Bradford Royal Infirmary.  My tour of West Yorkshire medical facilities continues.

My assumption is that this will lead to a hearing aid.  That said, most of my treatment assumptions have been wrong so far so I’m probably getting ahead of myself.

Frustratingly, new hospital means pay for parking.  I don’t think they’ll give me a freebie if I produce my Huddersfield/Halifax cancer parking voucher for a hearing appointment in Bradford.

Maybe I should play deaf until they give up and issue a freebie out of frustration.

Do I Renew My Season Ticket?

The football season seems to last a long time when you’re an Oldham Athletic fan.  You find yourself watching a series of disappointing matches, interspersed with the occasional moment of sublime beauty and eventually avoid relegation with two games to spare.  Every five years or so you might giant kill somebody in the FA Cup.

It’s season ticket renewal time at Boundary Park.  Which raises the question is it worth paying for a season if the life expectancy chart is writing me off before Christmas?  The logical financial answer is “not really”.

The matter is confused somewhat by a buy now save a decent wedge of money offer.  Pay for a season and it works out at £12 a game, if I make it to every game.  Pay on the day is a rather shocking £24.

I’m yet to establish carer status too.  A handful of matches this season I’ve been able to use my receipt of full Personal Independence Payment benefit to obtain a free carer ticket if I pay full price myself.  If this applies for season tickets Chris gets a freebie.

Suddenly it looks more interesting as a financial proposition.  If the new drug I mentioned yesterday works I might even get to the end of next season before they wheel me into a hospice for my last week or two.

Ultimately emotion wins.  Saturday football is a key part of my life.  Last year I bought a season ticket to stick two fingers up at lung cancer.  Nothing changes this time around.  I’m going to buy again.

Moments like beating Rochdale again waiting to be made.

Will Atezolizumab Buy Me Another Four Months?

After I’d written about my fears of it being game up last night, potentially no treatments left, I wandered over to the Roy Castle Lung Cancer Foundation web site.

Its usually a mix of fund raising efforts and death.  Occasionally medical breakthroughs.

Yesterday, in a rather timely way, came this story of Atizolizumab, a new immunotherapy drug that NICE have decided can be provided on the NHS.

From memory, this is the drug that people go to private clinics in Germany for, paying c€100,000 to enjoy the benefits while they can.  The redundancy money won’t stretch that far.

The medical benefits are modest.  Chemotherapy survival tends to be around eight months.  This drug adds just over four months to average life expectancy.  I’d rather the kids inherit than get an extra four months of life.  Equally, the possibility of my taxes from previous years funding my treatment appeals highly.  The 40% I paid on part of that redundancy income last year will probably directly cover the cost to the taxpayer.

So maybe, just maybe, there’s a chance I’ll get this drug.  Maybe, while/if I’m taking it, something else will come along either through medical trials or NICE and the NHS and buy a more substantial time frame than four month (which as an average suggests many patients get virtually no extra time).

Of intrigue now is whether Oncobabe is even aware of it.  I knew about osimertinib before she did!

Meanwhile, a reminder that I’m raising money for Roy Castle Lung Cancer Foundation.  Many readers have already donated.  The opportunity to share the link with those work colleagues who know me would be greatly appreciated.  If you’ve not donated, you’re more than welcome to.

I might not be feeling 100%.  The illnesses I have are very frustrating.  But I refuse to give up hope and this breakthrough has put a new spring in my somewhat shaky step.

Wondering if it’s Game Over

While I’d prefer a couple more decades, death doesn’t really phase me.  The painful drugged up bit concerns me a little, but on the whole it’s always been an inevitable outcome of living.

Tonight’s scan got me though.  My new pain in my lower back made it very difficult to lie down on the scanner.  To the point where I was in distress for the duration of the scan.  Not good and suddenly the thought that it maybe isn’t just the strain I thought it was.

If it is cancer, the chemotherapy ends.  If the trials don’t want me, I’m reduced to pain relief.  It’s quite possible that today’s imaging will lead to journey end.  That would be disappointing to say the least.

There remains the possibility that’s it’s some sort of strain or knock.  My track record in recent months isn’t great though.  If I fear cancer cells, it seems I’m often right before the medics confirm things.

Tonight, my thinking is a little flat.  I wish it wasn’t.

25 Degrees Celsius, Four Layers, Shivering

And my back hurts!

As the morning has progressed, I’ve started shivering.  This in addition to a new back pain that has been rather uncomfortable.  Despite having my heater up to a very warm level, and thermal vest on as part of four layers of clothing, I cannot stop shivering.

New pains always concern me.  Who knows if I’ve just strained something or not?  But the shivers are new.  I’ve felt the cold for months, but my uncontrollable shaking is something new.  I’ve even got a blanket over my excessive clothing and that seems like it’s no use.

Apparently a side effect of chemotherapy.  Ah well, something to add to constipation then.  It’s very uncomfortable and making the back pain worse!

Not a good day.  Scan later.

The Directors’ Box

The journey to and from Oxford was littered with something I hate.  Smart Motorways.  Or building of Smart Motorway.

Barely a car in sight.  50mph speed limit.  Not impressed.  Even less impressed as when we did find the national speed limit a multitude of idiots took to not indicating, moving into my lane, not speeding up to my speed, and slowly passing somebody doing 48mph in the inside lane.  A braking from my 70mph plus approach needed on far too many occasions.  Chris is used to my road rage but I’m convinced driving standards are worse than ever.

Still, despite being Friday night and making two stops, we made good time.  Sleep at the Holiday In Express was poor quality.  The mattress didn’t help, but some lower back / buttock pain was niggling.  New cancer growth?  Don’t know.  It might have been the length of time in the BMW which, while a beautiful car, does seem to contort my aching body a little.

Two tramadol for the first time in weeks and a couple of paracetamol numbed the pain and I got a good six hours sleep.

We headed off for a late breakfast, included in the room rate but they managed to make bacon, sausage and scrambled egg taste average.  Coffee and orange juice well received though.  We killed a few hours in our late checkout room before heading out for a walk.

Despite my injuries we got from one end of the ground to the Frankie and Benny’s at the other.  Alas, fully booked.  Annoying.  Then into a chip shop and burger bar where I ended up with a cardboard cheeseburger.  Mediocre nutrition.  The drive home later at least saw an M&S chicken sandwich get into me.  Culinary delights hadnt been the order of the day..

But in between, there was the match.  The possibility of free tickets from a friend in touch with a player was on the table.  Many years ago I’d been promised the same at a Burnley v Stockport game.  It seems that time the bloke at Burnley seemed to have given my tickets to his mate as they’d ceased to exist by the time I got there.  I don’t like Burnley.

This time the messages started bouncing backwards and forwards as to where we should collect our tickets.  “Reception” failed us as confusion between player name, my name and friend’s name left a trail of of destruction in the series of freebies Oxford United were dishing out.

No tickets, but another option.  There’s another door further round the stand.  We went there.  Asked and waited.  The nice lady came out of her office and headed back in the general direction we’d come from.  What seemed like an age later, but was probably only five minutes, we were in.  Well, in the bar to be precise.  £40 of free tickets was very welcome but partially offset by paying £4.70 for a 330ml bottle of lager, but we were £40 up with the tickets.  A rssultt to offset the petrol and hotel costs.

Then into the seated area in the stand called the directors’ box.  A decent view across the pitch to several hundred other Oldham fans.  People in suits sat there with us while I continued my Wurzel Gummidge tour of the U.K. and eventually Oldham’s saviour, the Morrocan born new owner, appeared with his family and a bright blue suit which wouldn’t be out of place in a holiday camp.  We sat back into our padded seat as the players emerged from the tunnel.

The first half started.  Our on loan centre half who’s from Manchester City and is rather good got injured.  Our substitute full back who’s never played a league game comes on.  This is not a good start.  We now have two centre backs with combined ages under forty and one of whom isn’t a centre back.  These kids are not what you need in a relegation battle I thought.

The game ended goalless.  The quality wasn’t great but somehow I found it highly entertaining.  Part of that was due to the Oxford fan in the section next to us getting unbelievably angry every time the Oldham team did anything.  Despite it being clear we were trying, albeit unsuccessfully, to win the game he was getting particularly angry at perceived time wasting.  When an Oldham player escaped a red card for a wild high challenge this bloke’s head nearly joined the International Space Station in orbit above the planet.  He wasn’t happy at all!

Meanwhile, despite best efforts, Oldham were pretty much reduced to a blocked effort before half time and a substitute making a bursting run and shooting so wide the ball went out for a throw in.  Still, goalless is quite good for a team that leaks goals and has conceded more than the other twenty three members of League One this season.

Good time with Chris who heads back to university today.  A long but relatively easy drive home and a decent sleep without that pain returning.  Good news as any pain makes me think my date of death is closing in!

Next up, Walsall at home on Wednesday.  Does it get any bigger than this?

Finding the Motivation

The progression of my disease and the loss of foreign travel has hit hard.  A big part of my post -diagnosis life was plan travel and then travel.  A comment yesterday about how my blogs used to be longer is true.  But there’s only so much you can write about constipation, the Anglesey hot tub and Oldham Athletic.

Yesterday summed it up.  I’d planned a haircut.  Sorting out my missing scan, waiting on return calls left me in a cant be arsed mood.  I had time, but I couldn’t be bothered leaving the house.  A year ago I was grabbing every opportunity to live.  Now I’m over focused on reading stuff that, more and more, reminds me death relatively soon is likely.  Granted, I’m not depressed.  Pain levels are very low.  But I do need to be careful I don’t waste what life I’ve got left.

Chris messaged me this morning about heading down to Oxford for the football tomorrow.  My initial instinct was that I was too tired.  Almost a sinking feeling.  But it was a wake up call.  I love our football away days.  I have time and money to ease the journey over two days with a hotel stop.  A friend has even hinted at being able to sort out free tickets.  And although Chris hasn’t said, a web site he writes match reports for is run by an Oxford United fan.  Possibly a chance to meet up.

It all falls into place nicely.  Why waste a day when I can do stuff?  Walk from hotel to ground is short.  It’s a great opportunity to help me snap out of what I’d describe as a wasteful routine.

I drove down to the barbers.  A small task that I’ve been putting off for weeks.  Hair was styled like Heinz Wolf.  Bald dome with hair sticking out at funny angles.  Problem actioned and solved.  A positive act.

I keep putting off lunch dates.  Fear I’ll be too tired so I don’t arrange to meet people as often as I have been doing.  Granted, feeling rubbish due to chemo and constipation isn’t great.  But perhaps I should be arranging to meet people on the reasonable proviso I can cancel last minute.

From the barber I headed onto Wetherspoons for a solo lunch.  No easy parking as Halifax was packed.  So my first Burger King in years became the alternative.  It always appeals yet never fails to disappoint.  £6.24 of mediocre food and drink consumed that filled me up but didn’t leave me wanting to return.

Still, I got myself out and about, albeit without any social interaction.  Time with Chris lined up and plans to see Rachel on Sunday.

I just need to ensure I can keep finding a zest for life.  It’d be a poor show to be a miserable so and so and then survive for years!

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