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Seeing the World

Life has served up a fantastic opportunity to travel

Scan Done – Exhausted

Having a scan done should not be physically demanding.  But as this session progressed I found it tougher and tougher.

The car park was full on arrival.  A tailback of cars on the main road queuing to get into the hospital.  I had no choice but to street park and the walk to the scanning unit wrecked me.  Made worse by knowing I’d have to walk back.

The nice radiotherapy assistant remembered my face.  And we briefly discussed Chile as she’d also remembered my holiday plans from earlier in the year.  That was the nasty scan the forced my drug change.  Let’s not have a repeat tumour on show please.

I was forced to drink water before being called for scan an hour after the appointment time.  A tough walk to the scanning room.  Hard to lift my legs up onto the bench.  Hard to get off again once the scan was complete.  Tough to get back to the car.  Dark gritted roads.

Results due 11th January.  I hope my energy levels recover long before then.

Once More into the Polo Mint

Once More into the Polo Mint

I’ve been on osimertinib for three months.  It’s statistical effectiveness is averaged at eight months.  But as the cancer became resistant to afatinib rather quickly I’m rather cautious about expecting to be above average.

Three months means it’s time for a photo shoot.  I’m invited in for a CT scan, which is one of the more pleasant forms of scan, where the results will decide if I’m okay to continue with my drug or get to progress to chemotherapy – that’s when I really will be dragging out the end game.

In June I was struggling to stand up, but capable of walking decent distances once I was on my feet.  I have little doubt that the osimertinib has successfully zapped the big tumour that beat afatinib.  And I can now stand up with relative ease.  Staying on my feet is more of a challenge.  Walking stick and disabled blue badge are now very much part of my life.  The pelvic damage too much for my failing body.

So I have a plan for today.  Late breakfast.  No food after 11.30am.  No revels.  Drive to Huddersfield at 2pm to collect my drugs that the scan might say I no longer need.  Drive to Halifax to have the scan.  Wait a fortnight for results.

The big question of the day comes in Halifax.  Do I pay to park on the car park, or park on the street for free but incur a longer walk to the scanning area in the hospital?  I’ll see how I’m feeling at the time.  My usual move towards free might be outweighed by a struggling body and long walk.

And I need to stay healthy for a new year trip to Shropshire!

Understanding Why Elderly Relatives Had Untidy Houses

Understanding Why Elderly Relatives Had Untidy Houses

I’m not instinctively tidy.  But I do like a bit if order, so usually get around to having the occasional clearout.

Since making myself a thinner man and a single ban I’ve repeated the art of chucking out rubbish and donating clothes to charity.  And kept my room relatively tidy.

On diagnosis last year, I started filling up a small number of boxes with stuff that I didn’t want to throw away or thought the kids might like.  And, despite the morbidity, I’ve wanted to add to that effort since getting home from my last USA trip.

The problem is, I have an element of struggle.  If I drop something on the floor, it’s difficult to pick it up.  Reaching through a crowd of pharmacy bags to get the half full big box seems beyond me.  And more importantly, organising my stuff for a room swap which will take the stairs out of my life, feels overwhelming.

Its not even as if I have loads of stuff.  I rent a room.  I moved in with pretty much one car load of stuff with a view to starting my life again following separation / divorce.  I certainly didn’t expect a death sentence a year later.

I think back to childhood visits to great aunts.  They weren’t very exciting.  But I was always struck by the relatively untidy homes.  That’s not to say that they were disgusting or anything severe, and they were probably better kept than my own bedroom.  But I get why things weren’t always put away where they should live.  Too much effort for aging bones perhaps.

One way or another I need to organise my head.  Decide what’s important and prioritise paperwork and drugs relevant to me.  But the actual effort of doing it all seems huge.  But I’m at a point where stairs are getting tough.  I need to move rooms.

Did My Bell’s Palsy Just Worsen?

Did My Bell’s Palsy Just Worsen?

There was a time when I’d check the mirror several times a week looking for improvements in my Bell’s palsy.  It is, after all, meant to go away soon rather than later.

These days I pay it a lot less attention.  Even when meeting new people, as I did yesterday, I feel a lot less conscious about it than I used to.  While I think my “look” is pretty dreadful I’m pretty comfortable with accepting other people just have to accept it as it is, and if they joke about it out of earshot so be it!

During the fifteen months of having the condition I’ve only seen one other person with it.  At Alcatraz, oddly enough!  I stared for a few seconds longer than I should have done.  Pondered a chat around shared experience and then decided against it.  The opening line of “you look like a gargoyle too” didn’t seem appropriate.

The key change for me happened in May.  My right eye became even more sore.  And the hearing went from my right ear.  Nothing they can do for the eye, so I just paste lacrilube gel on a few times a day and tape over it at night to stop the air drying it and making it sore while it sits there open.

The last few days the eye soreness has worsened.  Maybe it’s overuse of the little heater in my bedroom.  My landlord bought me a throw for Christmas.  Doubtless an investment in his heating bill.  The cancer seems to create late afternoon / early evening shivering that my body struggles to control.  Maybe the Bell’s palsy has deteriorate further.

The other notable changes in the palsy seem to be an extra indentation on my chin on the right side.  I have two there now that aren’t mirrored on the left.  In itself, this is small.  It doesn’t hurt.  It doesn’t offend.  But I think I look older as a result.

The nostrils remained misaligned with occasional nosebleeds.  The right eye still stays open.  The right ear is deaf.  The left ear keeps forming an air bubble within itself, affecting hearing further.  The forehead wrinkles remain gone on the right side of the forehead.

And I’ve given up on it ever going away.

Boxing Day Blues

Boxing Day Blues

I got enough hours of sleep.  I avoided watching the cricket – lesson learned.  But I feel a bit rough now that I’m properly awake.

The length of sleep has been characterised by a series of interruptions.  The big one being the feeling of a tiny boxing glove somewhere deep in my right buttock tapping away at me.  No match winning punches, but an ongoing gentle thudding through the night.

Naproxen and paracetamol having limited effect, despite having been successful in previous nights.

I can’t quite get my head around what’s causing it.  Maybe the weak bones and the piriformis muscles are chatting unkindly to each other.  Perhaps I’ve just sat on my rear at an unusual angle and upset the bones.  Or maybe one of the “numerous little tumours” that live their lives down there is about to roar into life.

I just don’t know.  I resisted the temptation to play with motphine and amitriptyline as its a football day and I’m due to drive over the Pennines to pick Chris up later.

And being absolutely honest, it annoyed me, made me uncomfortable, but from a pain perspective has been really minor.

The problem is, a series of “pain” like this over an extended period can make me feel more than unwell.

Fingers crossed it will just go away.

Every Intention of Being Here Next Christmas …

Every Intention of Being Here Next Christmas …

Thanks to everybody who’s read my blog this year.  It’s been a great year, a scary year and a year where I’ve successfully survived when far too many others with the same illness haven’t.

2018 will have similar challenges.  I’m not convinced I’ll do much travel, which is unusual for a travel blog.  But I’ll keep sharing my experiences assuming I can.  And maybe, if I feel stronger, I’ll get myself around Europe again.

It has been a year where I’ve flourished on the support of others.  Some practical, as was evidenced on my trip to and from Plymouth yesterday. Much of it just emotional goodwill.  A social media empathy that has helped keep my spirits up.  The kids and Rachel too.  People who are there for me when needed.  Even if I don’t ask, because sometimes I’m too proud to seek support.

The average lifespan of my current drug osimertinib means I can’t guarantee still being here next Christmas.  But then I suppose none of us can.  We all have a proverbial bus that we might walk under and maybe, just maybe, I can join the small percentage of freaks who have survived for years on this relatively new medication.

In my head, I expect to still be here in December 2018.  And beyond.  Hell, I need to get to April 2019 to save the kids from a big inheritance tax bill!  And despite having found a new level of feeble in recent weeks I’m still hopeful I can keep this evil disease at bay a little longer.

Merry Christmas to friends, readers, acquaintances, former colleagues and schoolmates and whoever else just happens to be reading this.  If there’s one thing this year has taught me it’s that you should do whatever you can to deliver your dreams now.  And not put them off for half a lifetime.

Get out there, be generous to others, and enjoy life.

Does Nobody Think of the Disabled?

Does Nobody Think of the Disabled?

The good news is we made it to Plymouth.  The bad news is Argyle played well and Athletic didn’t.  I swear the first goal was offside, but to depart with a 4-1 thumping after the cost and effort of getting to the south west is a tough pill to take.

For the first time I availed myself to “special assistance”.  I’d requested it on a couple of flights earlier this year but decided I was ok at the airport and carried on as usual.  This time, I needed it.

The concept is simple.  You prebook somebody to wheel you and any bags from point A to point B while negotiating an airport or railway station.

Manchester Piccadilly was our starting point for this.  Although there’s nobody to wheel you from car park to special assistance help.  And it’s not obvious where to find special assistance.  In the end we wandered into the ticket office who directed us to a group of staff in hi-viz gear.  And a nice chap wheeled me to the platform with Chris close by.

I suppose it worked, but the walk to the ticket office was probably longer than the roll to the platform.  I suppose I know for next time.

On the train there were three disabled seats in our carriage.  We grabbed two.  Slightly more leg room.  I usually prefer a table but these seats were good for stretching out my leg.  Chris rolled out the flask of coffee and a bottle of whisky and combined the two.  While I don’t tend to drink much, this went down well.

As we pulled into Birmingham New Street the train announcer said “the next train to Exeter is 10.30am”.  I thought “great – that’ll qualify us for £50 delay compensation and give us more time to connect without missing kick off”.

We stepped off the train to look for our special assistance support.  A lady sent us to the lift and said to go up and she’ll meet us.  So we did.  And she did.  But despite a nice email the day before telling us a wheelchair will be provided, all we got was an escort between platforms.  Not being funny, but if I’d wanted to hobble between platforms I wouldn’t have requested special assistance.

Better still, the station boards told us time was running out.  The 10.30am claim from the train announcer was garbage.  10.12am was fast approaching and that was when the train was timed to depart.

We queued at the lift.  Wheelchairs and luggage carriers filled it before us.  It was 10.08am and we couldn’t get in.  It returned at 10.10am.  Hardly any space.  I got in and Chris took the escalator.  We reunited on the platform, I hauled myself onto the train and we walked down the carriage.  A feeling that “special assistance” at Birmingham New Street was, in fact, a bit crap.

I was ready with a rare assertive moment to tell the buggers in the disabled seats to clear off.  I chose not to when I saw their age and crutches.  We eventually got seats further down the carriage and the train set off to Exeter.  A lack of leg room, but somehow I coped.

Then, assisted by a few ciders, we arrived in Exeter.  Slightly late.  We reported to Mr hi viz on the platform who said somebody else had already benefited from my chair. He told us where to stand while he went to fetch the chair.  No available benches to sit on.

Had we been taking the train on to Plymouth, it was generously parked on the same platform we’d pulled in on.  When Mr hi viz returned a few minutes later we asked him to wheel us to the exit where Heather awaited.  Not seen her in years!  I alighted from the wheelchair and got into our generously provided transport to Plymouth.

The hour passed quickly and we got out of the car at a busy junction to minimise the walk to the ground.  I heard car horns, presumably welcoming us to the south west.  Chris quickly handed me my walking stick so that I could at least demonstrate to the offended motorists the reasons for their short delay.  I may have shared their impatience had I been in their car.  A reminder that sometimes the swine delaying you has good reason to be in your way.

We spotted John and Jack, our matchday buddies, and loaded our bags into the boot of their car.  Chris retained a second flask of Baileys Cream infused hot chocolate for half time consumption.

The walk around the stadium to the poorly signed away end was tough.  We were allowed to access via the exit doors rather than a very narrow turnstile.  And after a chat with friends entered the stadium.

I’ve written before about football ground design and those with disabilities.  Plymouth met the standard.  No railings on the stairways that give the seating areas.  I took the option of free styling myself up the steps, one at a time, but with nothing to lean on it’s bloody tough.  This was a modern stand built to modern planning requirements that haven’t taken gentlemen and ladies of restricted motion into account at all.

Granted, a proactive steward suggested I sat on the front row.  But I prefer my football from a higher vantage point and a fine rain that soaks you right through was in the air that the roof wasn’t keeping off those at the front.

I pondered the disasters of Hillsborough and Ibrox.  The latter involved a crush on the stairway exiting the ground.  I probably add to the risk of such a situation where I have no railing to support myself.  We waited for the masses to leave before taking to the steps again for a slow descent.

Strangely, our hotel asked if we would need assistance in the case of evacuation.  I ticked yes.  I’d never seen the question on any check in form before.  I’ve no idea what this would look like if fire alarms went off,   Hopefully I won’t be responsible for creating a hotel worker trying to get me out of the building.

But it reminded me of other situations where life could be made so much easier for those with a disability.

My hotel in Windermere a few weeks back had a stairway leading down to pool and hot tub.  The stair railing started over the first step.  It didn’t reach up to the landing area.  Net result, Dave having to lean disturbingly far forward to get onto the stairs, risking a fall.

The recent cold weather reminds you that councils tend not to grit footpaths and side roads.  Not always easy for the able bodied.  An absolute disaster if you already feel like your leg is hanging loose on your hip and you end up doing a Bambi impression.

Perhaps our society has given thought and money to wheelchair access to facilities over the years.   Maybe those in a wheel chair would think otherwise.  But for those like me who can still propel their legs forward in a restricted way, the world can feel like an unhelpful place.  A dangerous place.  And a handful of small changes could make it so much easier for the older generations and those like myself.

The Longest Journey

I Knew the Truth Way Ahead of the Medics

Wel it’s not exactly an “I told you so” occasion.  But for two key moments in my illness I’ve known what’s left of my crumbling body well enough to get ahead of the game.

The return of my big buttock tumour in the summer was the first moment.  It took three months for that to turn into a scan and an extra month to turn into a drug change.  But I knew my cancer was back in force.

What I didn’t realise was the extent of the damage it would do.  But reading back some of my posts over the last few weeks it’s clear that I understood where my body is failing me.  And that was all finally confirmed by Oncobabe yesterday.

Now there’s little doubt that had the drug change happened instantly, I wouldn’t have travelled to New England, Chile or the South West USA.  Great experiences would have been lost.

Equally, a drug change at that moment may well have protected those bones that are currently wasting away.  But perhaps the cancer resistance to osiminertinib would have hit sooner.  And I’d be heading down to chemotherapy and a more rapid departure from the world now, rather than hanging on in there a little bit longer.

So it’s no regrets that I got those trips in.  A positive that I’m still here.  Still fighting, even if fighting is the wrong word.  But I need to take stock of what adjustments I need to make for my hips to cope with the coming months.  My instinct of wanting to do everything for myself needs to be reigned in a little.  Accepting support from others is part of that.  Pride should not be more important than my reality.

And a real appreciation to those who provide help or just offer it cannot be understated.

Sacrum, Pelvis and Hip Joints – Wrecked!

Sacrum, Pelvis and Hip Joints – Wrecked!

I think it’s fair to say that meeting told me what I expected to hear.  I’ve been feeble around my pelvis for months and, if anything, it’s been worsening.

Today Oncobabe didn’t reveal any unpleasant news relating to bloods etc.  But the cold honest truth about some of the bits between torso and legs is out.

The good news is that the bits you immediately thought of there are fine.  It’s anything that involves bone that’s the problem.

Badically my sacrum, pelvis and hips suffered significantly.  Presumably after the Afatinib stopped working in the summer and before the Osimertinib commenced in October the cancer munched away for fun.  The bones are weak.  I’ve described myself as feeling feeble and the X-ray has pretty much confirmed that.

There is good news.  The femur is fine and dandy.  But some key parts of me are not 100% and it’s fairly clear they never will be again.  And I really should avoid ice, walks of any significance and any sort of risk taking when it comes to crossing the road.

Next up, a CT scan next week.  Oncobabe is going to share pictures of my insides with numerous other Onco professionals and decide if there’s anything that can be done for me,  At the moment, she thinks this is as good as it gets.

I can still enjoy life.  But the idea of taking on more overseas trips really doesn’t appeal.  And I wonder whether I’ve flown abroad for the last time.

The Hospital Changed Things – Instant Creation of Patient Worry

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