Seeing the World

For a lot of the time I’ve known I’ve had lung cancer I’ve felt OK.  Tired occasionally.  But usually getting on with my retired life as normal.

As the pelvis has lost strength that changed a little.  It’s now over five weeks since my last chemotherapy and, truth be known, I feel rubbish.

A run down feeling where I’m struggling to do anything at pace.  Returning aches to the right side of my right thigh.  Minor pain in what I assume are the tops of both lungs.

From enjoying multiple holidays last year, hence the name of the blog, I’m now keen to squeeze a bit of enjoyment out of my days in.  Getting out is tiring and I need to prioritise appointments before seeing how I feel.  Just getting a lift to a hospital and back is a tougher mission than I’d ever believe.

Today sees an afternoon return to Oncobabe.  I need to ask questions about radiotherapy- why hasn’t it happened?  My biopsy result and how that changes the course of treatment.  And referrals to join medical trials.  Atezolizumab, the new immunotherapy drug she said wasn’t yet available on the NHS even though I knew it was.  I delayed challenging her assertion until the biopsy results are in.  That’s today.

Ultimately I feel pretty ropey.  A few minor aches.  Little get up and go.  Little desire to eat and little desire to do anything.  It’s a circle I’d like to break, but I’m not sure my energy levels are up to it.

Continue reading “Just Full of it” →

As the bank holiday draws to a close, a rather nice Yorkshire lady pours me a glass of wine.  A pleasant evening in is planned and then the pelvic pain screams at me.

First drug, paracetamol.  Failure, but it gives me a chance to pay a visit before constipation causing drugs have to be taken.

Second drug, slow release morphine.  Twelve hours of possible sleep, and a high chance of an early end to a pleasant night in.

I pack my bag ready to leave in the morning.  Leaving the drugs next to the bed as some may be useful in the night.  Not the motphines though.  I swig rapid action morphine and it seems to numb the pain rapidly.

Amitriptylene goes unused, for now.  But if my right leg starts shaking in the night I won’t hesitate.

Staying awake much beyond 9pm with this lot inside me seems unlikely.  But sleep and these stronger drugs are my plan C.  Plan D is get on a morphine drip at the hospital. I could do without that.

Thursday is when Oncobabe updates me on my treatment options.  It can’t come soon enough.  I can’t believe radiotherapy hasn’t already happened.

Oldham Athletic have been relegated.  While not a shock, the bland and passionless draw at Northampton on the final day of the season summed it up.  Needing a win to survive, they didn’t exactly throw the kitchen sink at it.  If they had I’d probably be suffering more at the failure to score a winner.  But they passed the ball around thinking they were Barcelona, created few chances and could easily have lost.

So League Two it is.  For Chris it’s the first time they’ve changed division in his life.  I remember them in the Premier League.  Playing a League Cup final at Wembley.  Being everybody’s favourite second team.  But Saturday’s failure takes them to the bottom.  Except Tranmere and Stockport will tell you there’s further to drop.

For me, I’m wondering will I be alive to see them next season.  That’s August.  Chris will be wondering will they ever go back up.  May next year at the earliest.

That new owner doesn’t seem as exciting as he did in January.

i know there’s a solution to this pain.  But I slept for fourteen hours last night.  Seven is my standard.  The sciatic shock down my right side is unpleasant.  But I want to watch the football on telly and follow the Stockport play-off game on Twitter.

If I succumb to the drugs it’ll be lunch time tomorrow before I know the scores.  I seem to find a mind over matter technique to stop the sciatica.  At least for now my leg’s random twitching is the only problem.  And I haven’t drugged myself.

The big challenge now is to allow the mysterious mind over matter technique to beat the cancer.  Long shot.  Hemp seed oil doesn’t seem to be doing the job.  I wonder if it’s in any way possible.  95,000 UK deaths to lung cancer last year suggests not.

I wake up in something of a haze.  The amitriptyline is the most likely cause.  Minor rumblings of sciatica down the right leg respond well to the drug.  Cognitive brilliance is pretty much wiped out by it.

Ive no idea how long passes as I drift into and out of sleep.  Thanks to the Bell’s palsy my nose is running.  I nearly knock over a range of drugs and water to reach a tissue.  The Bell’s palsy won’t kill me but it’s been an unhelpful swine while I’ve been facing into bigger things.  I remind myself I need to find a driver for Friday’s eye appointment in Huddersfield.

I lift myself carefully out of bed.  My body core is weak and I’ve strained it with similar manoeuvres in recent days.  But once I’m sat up I start the day with two paracetamol.  I’m reluctant to do daytime opioids.  But if things get bad I will.

I get a message from my stepdaughter checking when I get my biopsy results.  10th May I think.  Roughly 18 months after diagnosis.  Half of those who were diagnosed at the same time as me were dead within four months.  While I don’t feel lucky, I do appreciate being given the chance to live a little more life.  I refuse to become bitter about something I can’t control.

I haven’t eaten many breakfasts recently.  Today a lemon ice lolly is more interesting than the Coco Pops.  I’ve lost more weight which is probably not good for me.  The fruit bowl may supply lunch.  Paul, friend and landlord, will doubtless cook me a half decent tea.

I’m really wobbly when I walk.  This is strange as the last pelvic scan suggested stronger bones.  But I often walk around the house with a walking stick now.  Oncobabe fears me breaking bones.  She’s certainly scared me.  A bit of cancer, fine.  Spending my last few months with broken hips waiting for the cancer to kill me isn’t a prospect that appeals.

The strained back reminds me I should probably rest today.  The problem is I’ve done a lot of resting recently.  I’d prefer to get out, but getting around just tires me.  Building my strength up for Saturday’s  big football match at Northampton is the target.  Lose by nine goals and Oldham are relegated.  Get a result worse than Rochdale and the trap door to League Two also opens.  Don’t get mullered and do as well or badly (or better) as Rochdale and season 22 in League One begins in August.

Back to bed.  I’m still unsure about the daytime drugs.  At least the sciatica is resting, for now.

I think it’s fair to put my recent lack of posting down to pain relief.  Tramadol or morphine are my current drugs of choice.  Both knock me out, if not physically then certainly mentally.

The idea of posting even a short blog update hasn’t appealed, simply because I’ve been somewhere close to semi-conscious a lot of the time.

It’s coming up to five weeks since I had any treatment that attacked my cancer.  My cancer knows this.  In my pelvic area it’s playing the computer game caterpillar.  Racing around a small matrix at high speed smashing into the outside of the board.  At night it lights up, burning pain felt in the affected area.  Hence the drugs.

The good news is I’m back on the Naproxen to manage this.  The bad news is that’s guaranteed constipation.  I can sit or lie at many angles, but they all eventually hurt. Hauling myself off the bed is tough going and inevitably hurts.  The postman came to deliver a parcel the other day.  I’m deaf and didn’t hear.  The redelivery option is likely to have the same result.  Accessing the local post offices to collect is a nuisance of minimal parking spaces and huge demand for the blue badge.

None of this is fun.  I think it’s a couple of weeks until they attack my cancer again.  I really hope that’s not too late!

It’s been a day of nothing.  Sleep.  Paracetamol.  But I’ve avoided the heavy drugs that saw me through the night.  But I have been wiped out.

This raises interesting questions about tomorrow.  Will my night involve more heavy drug taking?  Will I be fit to drive?  Will a normal Saturday with Chris work?

At present, I’m thinking yes.  But as darkness falls my favourite cancer cells tend to wiggle harder.  While my instinct is to go easy on the drugs various doctors are happy to dish out “take what you need when you need” advice within the confines of the prescription count.

The problem is this can create tiredness.  It makes driving a dubious task and I don’t want to endanger others.  It makes my enjoyment of being alive significantly lower.

It’s fair to say that I won’t know how I am until tomorrow arrives.  And today’s wake up time was four hours later than usual at 11am.  No chance of that breakfast tomorrow with a repeat!