Seeing the World

The good news is my latest miracle drug is still working.  Any thoughts that I can still feel my pelvic tumour are just about gone.  Although I do still scratch my back where it used to tickle me.

That’s not to say it’s all plain sailing.  My right leg is stronger and moving freely, but still has a sense of pins and needles in it.  Whether the shrunken tumour is still pressing against the nerve or whether the nerve remains crushed in some way I don’t know.  But while it’s better, it’s not completely right.

There have also been sporadic pains in the leg where I imagine there’s been tissue damage caused by the tumour.  Fact or psycho-semantic impact?  I haven’t got a clue and a scan is a long way off.  I have popped a couple of paracetamol at times.  But none of the serious pain relievers.

I’ve not taken on any walks beyond the stairs at home and getting to the hot tub in Anglesey.  Tomorrow sees a return to watching football and I might cover a few extra yards between parking and seat than I’ve challenged myself to since the drug came.

I will ask more about my physical limitations on Tuesday when I visit the hospital for some bone strengthening medicine to be pumped into me.  Oncobabe’s talk of broken leg risk has me behaving cautiously.  Or lazily.

In summary though, the improvements across the first four days of osimertinib were dramatic.  Days five to eleven have me unaware of any changes.

100,000 Avios and Can’t Fly!

Last night I hit 100,000 Avios.  Again.  Not bad having run down my stash to zero to fly first class to Boston in June.

Perhaps less exciting when your medics aren’t keen for you to fly anywhere.

Irritating when the most cost effective use of Avios is long haul business class flying. While I could cash in the points and overload myself with dozens of bottles of wine, stay in a few hotel rooms or hire a couple of cars, Avios are best value for flying posh.  And, at least for now, I’m not allowed.

100,000 will get me a return fare from the UK to New York alone.  As long as I throw in over £500 in “taxes” to BA.  Or I could transfer my BA Avios to Iberia Avios.  And fly from Madrid to New York for 64,000 Avios plus just £175 in “taxes”.  Plus a flight to Madrid of course.

It’s not that I have a compelling desire to see New York again.  I’m just trying to explain the value of what I can’t use.  Hopefully I will fly again and burn these points on something productive.  The Iberia trick to save points and cash, if not time, is one that others should note.

I don’t think I could bear to wastefully spend these points on poor value ancillary purchases.  If my health declines before I spend them the plan is to create a family account with Chris and give him some opportunities.  While officially the points cease when I do, if they’re attached to a family account and nobody tells the Avios people I’m a goner Chris can continue to spend them.

I’ll have to ensure I train him well in the dark arts of Avios accrual and redemption.  It’s a game I enjoy.  Even if I might not get a decent use of my current stash for myself.

Am I Facing a Flight Ban?

The conversation with Oncobabe only went as far as Australia.  Other destinations weren’t discussed.  But her message was clear – I’m not going to Australia.

The door may have been left slightly open, the final discussion is just over two weeks off, but the idea of flying, suffering low white blood cell count, developing an infection and needing a rapid application of IV antibiotics several hours before landing wasn’t something she favoured.

As I pick through my itiniary, ensuring I can get some money back from bookings made in January, it crosses my mind that this new osimertinib drug is effectively a flight ban.  Now granted, cars and tunnels open up opportunities.  Cruise ships have medical facilities.  “Travel in hope” doesn’t close down because of this.

So I do need more clarity from Oncobabe as to the limits of travel.  And I’m assuming she can’t actually ban me from doing anything.

30th October will be an interesting discussion.  “I’m going to Australia and need two months of osimertinib” might yet be met by a “well you can only have one”.  That’s me snookered.  Or murdered!

It seems I have a 30% chance of low white blood cell count.  And presumably that’s not a guarantee of infection.  Although planes and their air conditioning might not be the best way to avoid a problem.

I’m balancing up a 30% risk of something nasty happening, which is probably lower in truth, against obtaining a dream that the credit crunch pinched by screwing the values of my 2008 share options.

Now if it was 30% v guaranteed death in a few months anyway I’d probably take the risk.  Finland takes EHIC.  Australia has a reciprocal medical arrangement with the NHS.  Qatar have doctors and billing systems.

But the conundrum in my head is around developing treatments.  This morning I’ve read about a trial of five new drugs that can further extend life.  Osimertinib trials recorded 2% of patients tumour free after a year – no idea what’s happened to them since.  Small numbers, but they could be me.  Other treatments and breakthroughs could be around the corner.  No point being dead before accessing them!

The last few years have seen so many lung cancer breakthroughs and it seems that more are due.  Notwithstanding the rather unpleasant fact that 60% of those diagnosed at the same time I was are no longer with us.

It’s a tough conundrum.  I don’t want to disrespect what is doubtless good medical advice.  I don’t want to leave my family the job of getting me back (dead or alive) from an overseas medical emergency.  But I’m looking at the 70% no risks statistic and thinking it’s one worth taking.  If I can take enough pills with me.

My mind isn’t made up one way or the other.

My Unexpected Emotional Outburst

December last year was tough.  The previous month had seen me diagnosed with certain death.  December had seen me start treatment with a miracle drug that should extend my life by a couple of years.  The TV screens were suddenly full of adverts for cancer charities.  I cried several times to myself.  For myself.  Watching an advert showing how sad a family is when someone dies of cancer ripped into me. I don’t want to cause them such pain.  But I know I will.

I don’t think I’ve cried since.  Until this morning.  A couple of unbelievably relaxing days split between hot tub, Jean Luc Picard and an occasional browse of the World Wide Web was coming to an end.

I’d turned the hot tub temperature down last night, realising that the Wednesday weather was going to be unkind.  No point taking a dip today!  It’s a couple of weeks before my sister returns with her family and I don’t think she’d appreciate paying to heat an unused pool to 38 Celsius for that time!

This morning I put things back as I found them.  Turned a few switches off and lowered the thermostat inside the cabin.  I gathered my things together and sat by the door, looking around.  Then it hit.

It probably only lasted thirty seconds, but a huge emotional wave hit me and I cried. Maybe I knew it was coming.  Maybe that’s why I’d taken myself to Anglesey.  But not a conscious decision.  I’ve found in the past that feeling sorry for yourself is rarely a good idea.  But while there was perhaps an element of grief to this moment I’m not sat here now feeling sorry for myself.

I’m not sure why it happened.  Or how long it’s been building up inside me.  Perhaps the change of medication is the key.  Much as the osimertinib has improved my condition and reduced my acne, the loss of afitinib was effectively the loss of two years of survival time.

I’m more than aware how averages work and always knew I might not hit average for afatinib.  But somehow the optimist in me had believed I’d outdo the average.  Have more time to enjoy the final go at life I’ve been offered.  Seek out new worlds.  Go where no man has gone before.  Or at least where I’ve not been before.

The moment has gone and I feel fine now.  I hope it takes its time returning.

A Day of Reflection

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