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Seeing the World

Life has served up a fantastic opportunity to travel

Afternoon Tea – and Then There Was One

Afternoon tea with my sister, brother in law and of course Rachel.  Overlooking the Menai Strait.  Very civilised.  Very British.  Very filling.

I first discovered the pleasure of afternoon tea two years ago.  Newly separated, I hit the dating sites.   My first new date in over twenty years was a nurse.  It formed my MO for some that followed.  A walk followed by afternoon tea in one of the Yorkshire Dales many tea rooms.

While the afternoon was pleasant enough, things started to go wrong over food.  Mainly the bit where the bill came and I discovered that they didn’t accept card payment.  I ran out to my car, emptied my bag of emergency parking money and politely let the lady know she’d have to go halves on the bill.

While we never met again, the simple concept of the tea room stuck with me.  In the right location it is an utterly wonderful experience.  One I’ve now shared twice with Rachel, who didn’t get the tea room routine from me originally.  Sunday lunch was the order of the day post-walk that happy day.

Alas, after today’s tea, Rachel has returned to Yorkshireland and work leaving me to continue my Anglesey experience solo.  And while I’m usually quite happy in my own company and own world, I’m feeling a little lonely tonight.

As a couple, this has been our most visited place away from home.  It’s already packed with happy and simple memories.  While I can stare at the stars solo, it seemed so much more fun with company.

My current plan is to depart Thursday.  The option to shorten or lengthen that timescale remains.

Lung cancer is Britain’s biggest cancer killer – please click to donate to ROY CASTLE LUNG CANCER FOUNDATION to help change this

The Two Places I Feel Comfortable

Not geographical locations!  I’m struggling over the last few days.  Standing up is uncomfortable.  Sitting down is uncomfortable.  Lying down works, for a bit.  Hot tub works for an hour or so before I feel the need to do something else.

In summary, my weakened pelvic area is driving me nuts.  I really can’t sit down for any period of time.  It hurts a little.  Lying on the bed is ok, but feels a bit anti social during daylight hours despite a very accepting lovely blonde lady.  The hot tub wins, lifting the weight out of my body.  But it hammered it down yesterday afternoon and a win at Scrabble was preferred to rain.

I’m currently awake early feeling quite agitated by it all.  I’ve even stolen some of my sister’s shortbread for comfort.  And, as I attempt to utilise lying on the settee in a new effort at comfort, waiting for the Anglesey vista to appear out of the darkness, I wonder how on earth those further down the line of cancer deterioration cope.

Make today the day we hit £3,000 for Roy Castle Lung Cancer Foundation

The Unspoken Side Effects of Pain Medication

WARNING: You may prefer to click here and hand over your money than read the article below

It’s 10.30am.  I leave my desk for a few minutes daily.  Regular as clockwork.  An opportunity to escape the workplace.  Post something meaningless on Facebook.  And oblute accordingly.

The halcyon days that preceded cancer, redundancy and pain relief medication.

Naproxen, tramadol and morphine have had words though.  There are an army of people in this country and across the world on such drugs.  Many suffer a side effect that must drive them mad.

I will try not to be too descriptive about constipation.  It’s a curse though.  And not one that people tend to talk openly about.

The normal function of your body’s waste disposal is completely changed.  Sitting there knowing it’s time to go.  Only to discover it isn’t.

Sitting there knowing you’ve been.  But 85% of what was hoping to depart remains in tact.

Standing up, thinking you’ve not been able to go.  Only to discover that somehow you have, but just didn’t feel it.  And yet you still have more that declined the exit opportunity.

Needing 18 triple ply rolls for a fiver.  Because it’s sticky.  Sorry, but it is.  Multiple removal efforts needed each time.  Not to mention extra bleach for the porcelain.

Granted, the sachets pictured above help.  But overdo them and you’re visiting half a dozen times a day.  Underdo them and the problems listed above return.

I would like to think I will die with some element of dignity.  Constipation makes that seem rather unlikely!

Weaker

There is good news.  The butt pain tumour does seem to have been damaged by last week’s chemotherapy and radiotherapy.  A complete job?  Probably not.

There’s still something niggling down there.  Not painfully.  But I can sense it.  Maybe it’s a fried tumour disintegrating.  Maybe it’s shrunken but waiting to return.  Time will tell.

What is clear is that my frame seems weaker since the treatment.  Because the pain is currently absent I’m less aware of the position my body is in as I attemp to stand up.  The pain somehow informing me I was good to move.  Now nothing.  That’s good.  But suddenly getting out of bed feels tough.  Confidence or strength to stand up is absent.  I’m wobbly as I lift myself to stand.  And despite being damaged, where the tumour was / is still seems to leave me with restricted movement.

Then again, the bread is out of the bread maker.  The bacon and eggs are ready to cook.  And I’ve already been in the hot tub.  Life is good.

Please give generously to ROY CASTLE LUNG CANCER FOUNDATION

The Return to the Hot Tub

£2,338.25 raised in three days.  Thank you for every penny contributed.

Today sees a return to Anglesey and that much loved hot tub.  There was probably a time when I’d have quickly become bored of sitting there doing nothing in a pool of hot water.  But it has become an essential part of my therapy in recent months.

Standing, sitting or lying in one place becomes uncomfortable quickly.  My crumbled pelvis to blame apparently.  And quickly adjusting position isn’t something easily done these days.

Hot tub therapy works for me.  The water takes weight off my midriff.  The jets soothe areas of pain.  Oddly now that radiotherapy appears to have removed my tumour pain in the pelvis, a coccyx pain has returned.  Water will hopefully relieve that too.

And with my daily route limited between bedroom, kitchen and hot tub I only have a few yards to move before I can lower myself into the waters.  Granted, a heavy cover needs shifting.  And the step down into the welcoming pool requires an act of balance and care to avoid injury that remains deliverable even on my frailer days.

But the results of just sitting there while my whole body benefits from the waters cannot be compared.  It might not be extending my life, but it’s a simple therapy that brings new comfort to a body that so often struggles to relax as disease has spread.

While Rachel is there the wine and Prosecco will flow and we’ll enjoy time with each other.  After she returns home on Monday a simpler life of cooked breakfast, bathe, dry, eat, repeat will commence.  Less alcohol.  But still time to enjoy the views over fields of new born lambs and forget about dying for a bit.

Please donate with Gift Aid to ROY CASTLE LUNG CANCER FOUNDATION

The Holiday Flashbacks and Wheelchairs

This time a year ago I was on leg two of my world tour.  Malta had started my “I’m going to die let’s see the planet” tour.  Bratislava was then my home for a few nights.

A year on, and it’s a trip to Calderdale hospital to give a blood sample, be annoyed at the lack of disabled parking spaces and be very kindly offered a seat by a chap of a similar age who worked for Halfords.  I took it.

The disabled parking frustration was interesting.  I seem to recall being thoroughly pissed off by car parks with numerous empty disabled spaces and no normal availability.  How times have changed.  Seeing things from the point of view of the partially disabled is certainly eye opening.  Railings on the wall in Calderdale hospital are a major benefit to me with my walking stick.  So few buildings offer such welcome support.

Bratislava was chosen as a destination for a handful of reasons.  Cheap flights from Leeds.  An apartment in the centre for £40 a night.  A vague fascination with Eastern Europe, not that Slovakia is that far east.  And a scene in the James Bond film The Living Daylights, which I subsequently discovered had been filmed in Vienna!

I walked for miles.  Saw most of the city on foot.  Climbed hills up to the Castle.  Ate street food and pondered the fall of communism and how this city appeared to have thrived.

And identifying my excellent mobility of just a year ago made me sad.  My lung cancer hasn’t given me a cough yet.  It’s just attacked my bones.  And somewhere between then and now that mobility has declined dramatically.  To the point where, on Saturday, Chris started a conversation about wheelchairs.  I’m not ready for that.  But I wasn’t ready for the walking stick I now rely on.  It might yet become an idea I have to get used to.

Please donate whatever you can to ROY CASTLE LUNG CANCER FOUNDATION. Gift Aid it here.

Happy Matt Smith Day

There are moments in life that stand out.  Shared with friends and family, important to you when they perhaps mean little to others.

Five years and three weeks ago the not so mighty Oldham beat five times champions of Europe Liverpool 3-2.  A guy called Matt Smith, who seemed like he couldn’t hit a barn door during most of his career at Boundary Park scored twice.  Chris was ball boy.  Matt and friends joined me behind the goal.  As we exited the stadium in a state of shocked disbelief the news came through of the draw for the next round.  Everton at home in the fifth round.  Wow.

It was a poignant day.  We’d lost a close family friend, Tricia, that morning.  Lung cancer as a coincidence.  It felt like she’d departed to organise some happiness on a day that had started desperately sadly.

Then, three weeks later, five years ago today came that moment.  Whereas beating Liverpool was a wonderful achievement, Oldham were never behind in that game.  There was tension as they clung on.  Humour in the dying moments as Chris recovered the ball for a Liverpool corner and “accidentally” rolled it between Suarez and an agitated Shelvey as the clock ticked down.  But while the goals caused excitement and the final whistle joyous relief, the Everton game brought a single exhilarating moment that stands out.

Oldham had taken the lead but Everton entered injury time 2-1 ahead.  Corners for Oldham.  Fourth and final minute of injury time.  The Oldham goalkeeper runs the length of the pitch, joining the crowd of players in the Everton penalty area, causing mayhem as the ball swings towards the six yard box.  Through a crowd of players came the now legendary Smith.  Six foot six inches of power headed the ball goalwards.  And in.  The stadium erupted.  The final whistle blew.  2-2 final score.  A money spinning replay on Merseyside.  But just to be part of that moment of the ball hitting the net was an extraordinary feeling.

Fans remained in the stadium celebrating a draw as if they’d won the trophy for fifteen minutes after the game.  Smith did a solo lap of honour.  And when anybody asks “why do you watch that shit?” there’s a simple answer.  Moments like that.

Time flies.  Circumstances change.  But memories matter.

 

If you enjoyed reading that please donate as little as £2 to ROY CASTLE LUNG CANCER FOUNDATION, using Gift Aid

Chemotherapy Low Point

Today is my low point on the U shaped chart between chemotherapy sessions.  Well, tomorrow is actually, but the phlebotomy units don’t open at weekends so they’re pretending today is the day I have to give a blood test.

I assume they take a “low point” reading at this stage to measure how I’m holding up to treatment.  A hell of a lot better than the first couple of days when you combined chemo and radiotherapy to space me out without warning me of the delirium it causes.

I do have a plan to sneak in a Wetherspoons breakfast.  Naughty, I know, but for some reason I don’t think Tuesday night fulfilled my pancake requirements.  I’ve given up getting drunk for Lent, mainly due to never usually getting drunk anyway.  So pancakes and coffee it is.  Probably before the blood test too, just to add a few E numbers to the bloodstream for them to analyse.

I’ve pretty much packed my small bag for Anglesey.  My dressing gown will be my main item of clothing for the week and that’s already there along with my swim shorts.  So iPad, charger and drugs supply are the main additions needed.  I’ll combine with Rachel for food shopping, probably en route, and make sure the supplies can see me through the week.  I’m not leaving the hut until I have to.  (It’s more a fully fledged all mod-cons bungalow, but I’m trying to make it sound rustic).

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How Close to Dying Am I?

The picture represents the location most of my childhood holidays took place at.  It’s also where the ashes of my mother, grandmother and uncle were spread between 2006 and 2008.  Saunton Sands in Devon.

It’s where I’d like to end up.  And the request has been made to my sister to fulfil that.   And while I’m not hoping to head back there soon, there are stark realities staring at me.

When I was initially diagnosed with lung cancer I googled survival rates.  Writing a post-divorce will became important.  3-6 months after diagnosis is the standard time to death.

Fortunately the targeted therapies of afatinib and osimertinib for non-smoker genetic failings kept me going.  My bones were strong until the afatinib failed.  Perhaps Oncobabe was slow accepting my claims that I thought my butt tumour was back.  Without those drugs I’d have been dead last Spring.  Even with them my pelvis is battered along with my hips.

And what happens when the chemo stops in March or April?  Do my 3-6 months start again?  The less favourable numbers don’t expect me to see much of the next football season.  But a percentage of us get to five years.  It’s a low percentage, but it’s a real number and real hope.  Time perhaps to be accepted for a drug trial.  Time perhaps to give my new love for life some longevity.

And there you see where lung cancer has its problem.  There just aren’t many victims left to front campaigns.  It’s a tough nut to crack.  There are no Kylie Minogue type survivors because they simply don’t survive.

I’ve enjoyed watching the fund raising total increase yesterday and today.  Admired the £200 anonymous donation.  Thank you.  Appreciated the tenner from a bloke I know has donated to two other Roy Castle collections I’ve linked to over the last year.    Been astounded and humbled to see the notional target met and then thrashed within a day.

It’s an unpleasant reality.  But I suspect in both November 2016 and September 2017 I was weeks from death.  I can’t count on making it through the year, despite my best intentions.

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