Seeing the World

The pain has gone.  I can still feel the nasty tumour playing but it almost tickles me now.  Inviting scratches rather than yelps.  The speed at which afatinib and now osimertinib have removed pain and improved mobility is amazing.

Now I just need somebody to invent a similar drug that works for decades rather than months.  For now, I’ll just get on with it.

Yesterday I spent time with Chris.  The first opportunity in five weeks.  His twentieth birthday weekend.  No football so I transported him to shops to spend his birthday money.  Leather jacket, football shirt and weekend bag among the things added to his FIFA purchase on the day.

I still see him as younger.  No longer a teen.  It’s a shock to the system.  I drop him off at his digs in Liverpool and his flat mates, or rather people in his student house who don’t actually life there, were preparing a roast meal and suggested we join them.  It proved to be a tasty experience with the culture of a nice glass of wine too.  The Young Ones this ain’t!

I then headed under the Mersey Tunnel and down the Wirral before crossing the Welsh border and moving on to Anglesey.  My right leg behaved itself and I didn’t need a stop.  Arriving at my sister’s holiday home in the dark I set to work on heating the hot tub, to discover she’d already arranged for the man on the site to do it for me.

I emptied my three days food into the fridge, made a cup of tea, attended to my Bell’s palsy eye with night time tape and went to sleep.

My plan for a couple of days is rest.  Minimal interaction with the outside world, blogs an exception.  Sit in the hot tub and ponder my situation,  the possibility of having to miss Australia and just take a break from it all.

I feel tired.  The pain, the uncertainty around the drug change, over 3,000 miles travelled in the American South West, everything.  It’s likely the next few months will be easier than the last few weeks.  These few days away from it are the start of me refreshing myself.

While knowing I’ve probably only got months before the next battle against this nasty disease hits.

Thinking About the Opportunities

Yesterday was a struggle.  Niggling pain frustrating me.  Low level.  And while it might not be a howling in agony situation, low level niggles of pain caused by my tumour are just about the most frustrating part of it.  Notwithstanding the death sentence they precede.

My nightly nocturnal visit to the little boys room revealed no improvement to my mobility and, certainly between the end of the England match and sleep I was staring at my range of painkillers trying to work out which ones I’d failed to use and which ones I could next use.  I downed my paracetamol, made a mental note of 3am for slow release morphine and slept.

An I got a good nine hours of slumber, minus my necessary visit.  Waking up I turn over to check the tine on my phone and think I’ve moved quite freely to do that.  I adopt my standard lying position which tends to find me least discomfort.  My right leg is still full of pins and needles.  My right buttock pain, checked with an unsubtle clenching movement, is virtually nil.

I ponder the painkillers.  The whole collection is now out of my body and I can start again.  If I want to.  Do I want to?  I decide to leave it until later.

In other words, I’ve woken up in minimal discomfort with no inclination to take pain relief.  Now if this is a result of osimertinib I’m a happy man.  As its average successful usage period is a tad short of a year, all I need now is to drag it out for three decades or so.

Here’s hoping!

Osimertinib – Day Two

I was counting down the hours to dose two.  Naproxen and paracetamol had rattled down my throat at 7.30am.  But I’m waiting to deliver the big one at 10.30am.

While a slight variation to timing probably makes little difference I prefer to keep the recommended gap between doses.  But I’m keen to start the damn thing working in a way I can feel.  And after one pill I can’t tell any difference.

Finally I succumb.  It’s 10.20am and I chase down pill two with half a glass of water.  Unlike the first dose, I don’t spend time analysing the effects.  And come the evening my now usual night pains arrive.

I treat them with appropriately timed painkillers and, at about 3am, think to myself that my tumour pain is a little less vicious than usual.  Perhaps more my imagination than a fact.  The other discomforts remain but that sharper nastiness does feel less sharp.  That said, sleeping the last few hours of the night is uncomfortable and virtually Impossible.

But perhaps the nasty git has shrunk a little.  As I count down to pill three I early hope so.

Osimertinib – Day One

It’s ten months ago that I started my afatinib tablets.  At the time, I didn’t expect to feel any improvement.  Not because they weren’t working, but because I thought the pain in my back, post surgery, was related to bone damage.  In other words, I thought I was stuck with it.

Four days into the treatment, my pain vanished.  It struck me then that this was the medicine shrinking the nasty buttock tumour I didn’t really know I had.  Just four days and the medicine worked!

Now the aforementioned groin (buttock) tumour is back.  Who knows where else in my body the nasties have grown too.  At least I can’t feel them.  So my scientific testing of osimertinib effectiveness is going to be how quickly my groin tumour gets zapped away by the medicine.

10.30am and I down the first tablet.  10.48am I can’t feel any change.  Similar at 11am.  Dave, I think this is going to take days rather than minutes.

Indeed, my tumour pain worsens through the day.  So much so that by the time I’m out with my work gang in the evening I’m actually in a great deal of discomfort.  I hadn’t helped myself, with every one of my four painkillers timed to cease working at around 9pm.  But I found myself dragging myself back to my car in severe pain.  Made worse by finding it difficult to squeeze into my sexy BMW.

I got home a few minutes later and started throwing more drugs down my throat.  A little relief but not as complete as I’d enjoyed over the previous couple of days.  This was close to my Friday night let’s get to hospital pain.  Not quite warranting a new trip.

This morning I’ve decided to stagger the medicines better.  Having the naproxen and slow release morphine expire at different times is probably the key.  As long as the gap of no morphine doesn’t hurt too much.

Then roll on 10.30am.  My osimertinib time.  Maybe pill two can start pushing back the nasty tumour.  I suspect it’ll be day four or five.  Although I can’t find anything online about how quickly these drugs work.  Sooner definitely suits.

Big Pharma

This is the company behind afatinib, whatever my new drug is called (I’ve already forgotten) and a handful of other lung cancer treatments.

Despite knowing, roughly, the cost to the NHS of these treatments, I’m in awe of the firm and the people who work for them.

The pain they’ve saved me from in the last few months has been immeasurable and, for now, I owe them my life.

Knowing there’s more developments on the horizon that could further extend my life might be a key part in making a decision not to go to Australia.

The risk of dying from a plane air conditioning system giving me something nasty v living a few more months would probably have me risking a trip to The Ashes.

But recognising that living a few more months has a reasonable chance of opening up a new treatment that could keep me alive longer comes into play.  I want to live longer.  Sorry kids, I want to defer your inheritance as long as possible!

At the moment Astra Zeneca are keeping me alive with the help of big payments from the NHS.  There’s a part of me that thinks I’m not really worth it.  But the reality is that only a few hundred people benefit from this treatment in the UK and we are part of a clinical trial that will have worldwide benefits for those with lung cancer.

Big Pharma may have a less than popular reputation.  But if it didn’t exist I reckon I’d have died last January.

I’ve Been Lucky

Today has been a pyjama day.  British Airways first class pyjamas no less.  A dose of oramorph early on and I’ve barely left my bed since.  The aches and pains when I do are unpleasant.  The drifting in and out of sleep welcome when I lie down.

My mind has been making strange shapes that have floated around my head and my one meal, fish and chips, nearly revisited about five mouthfuls in.  A tremendous effort to keep it at bay.

When awake I’ve focused on watching the meaningless videos on my Facebook timeline.  And thinking about how to make myself feel better for the drive to Huddersfield General tomorrow.

My brief effort to tidy room and medicines failed.  I just can’t concentrate yet.  Although a lack of morphine may have helped a little I still feel doped to the eyeballs and expect to heed a new dose tonight when the inevitable night time tumour pains kick in.

For now, it’s about coping and little else.  Hopefully the medication change, if it cones, can get me back to planning more trips.

Blues Riff