Seeing the World

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

I woke up this morning.  Which is always a handy way to start the day, and took stock of the pain relief options.

At the start of June I didn’t need any.  At the start of October I’m rattling around with the number of pills inside me trying to work out which ones are helping, which ones make me sluggish and which ones s nod me loopy and should only be used as a last resort.

I gave been quite successful in blending my four medicines together in a way that maximises pain relief and allows me to recall the time fans needed between drugs.  My Friday night pain meltdown was, however, the end to this.

My hospital stay brought another drug into the equation.  They weren’t interested in my naproxen.  But they did introduce me to oramorph.  And I have seventeen doses left!

Morphine packed with sugar.  Four doses a day maximum.  It’s effective quite quickly too.  Interestingly, it doesn’t seem to last long as a form of pain relief.  A couple of hours before things start hurting again.  But it has transformed the nature of that pain.  Or at least it has coincided with that change.

Pain can be hard to describe.  Friday night’s dash to the hospital was inspired by what I’d describe as a flaring pain changing in frequency that bloody hurt.  It improved through the day in hospital.  But I prefer to compare the night pain.  Cancer pain, apparently, likes to dance the night away.

After watching a scarily good Manchester City win at Chelsea I played the game of defer my medicine.  If it’s only going to benefit me a couple of hours I’ll take it as close to sleep as possible.  Despite spoon, I swigged an estimated 5ml from the bottle. Spillage unacceptable!  Down it went followed by paracetamol and tramadol.  I quickly found sleep.

But only for a couple of hours.  I woke a little confused.  There was quite severe pain, but not flaring.  More a constant “the horse kicked me here” kind of pain.  Less fluctuations in how it felt.  I downed two naproxen and hot back to sleep.

This morning I’ve taken no medicines.  It’s a chance to reset the clock on some and I’ve also completely forgotten what time I took others.  My pain levels are also relatively low and, other than heading downstairs for the kettle, I’m planning an inactive morning.

I also need to plan my scripts for Monday’s medical appointments.  Oncobabe needs to get me settled on my next cancer drug before I get to Australia in seven weeks.  Assuming my cancer type qualifies for the drug.  The bone biopsy that I may need isn’t  even booked yet.  Hopefully last month’s blood test has given me a favourable answer and the biopsy isn’t needed.

I need to have a proper pain discussion with my GP too.  What has worked in the past is less likely to work now.  What are the alternatives?  My hospital nurse was quite surprised that tramadol made little difference to my wellbeing.

Once I know where I’m heading medication wise I can contact airlines and hotels for special assistance getting around Australia.  Disabled bathroom access is now important to me.  There is also a little fear that I might have to cancel the whole trip.

Night Pains Take Me to Hospital

I’ve decided to do no more travelling between now and heading Down Under in November.  Other than, perhaps, the occasional relax in Anglesey at my sister’s place.

My three long trips this summer have taken it out of me.  All three of them fabulous experiences though.  But it’s time for a break and it’s necessary to give the doctors a chance to prod my body to determine my next treatment.

Of the minor things, my feet appear to be improving.  Regular salty foot baths helping.  The Bell’s palsy appears kinder.  My face is still contorted, my eye remains open and my right ear is deaf.   My nose still bleeds.  But the eye stings less.

The major issue remains the lung cancer.  Monday will see if the blood test confirms I can go on osiminertinib.  Or if I need a more invasive bone biopsy to establish this.  It’s a life extending drug, not a life saving one.  But I’ll take that.  It might only buy months of comfort but that’s time to enjoy life more and, just maybe, an opportunity for further treatments to evolve.  For now, my right buttock remains a source of pain, pelvis gripped by a tumour.  I fear a similar problem in my right chest.  Hopefully that’s a strain and not a tumour.  Assuming I’m given a X-ray on Monday maybe that’ll tell me.

My declining stock of prescription painkillers were issued in December last year.  The initial success of afatinib has meant I didn’t need them until June, and only on occasion since then.  For the last few weeks I’ve been piling down the Walmart purchased paracetamol and naproxen.  Effective most of the time.  Occasionally needing a boost from last year’s prescribed amitryptolene and tramadol.  It’s these last two that are running out.  My GP won’t repeat prescribe without seeing me.  Monday evening.

“Why do you heed painkillers?”

“Cancer is killing me”

“Here’s a prescription”

I’m assuming it will be that straight forward.  I’d rather get my painkillers from Oncobabe but it doesn’t work that way apparently.

Meanwhile I have the ongoing saga of Oldham Athletic to entertain me.  Apparently Clarence Seedorf, Dutch legend, is in line to manage them.  If a Moroccan chap takes over ownership of the club.

“Meat Pie, Lamb Tagine, Come on Abdallah, build us a team” and “Ooh, we got a couscous” might be the new chants.  Hopefully I’ll still be around to see the story pan out successfully.

After three weeks together in the USA I’m really missing Rachel.

New Pain New Fears