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Seeing the World

Life has served up a fantastic opportunity to travel

More National Parks – A Little Less Pain

The Utah National Parks are impressive.  The last two days have seen me revisit Bryce Canyon and see Capitol Reef for the first time.

Bryce impressed me more this time.  I think I “got” how the rocks look like people more than on my first visit.  I felt the spirit of the place better.  And also took in an amazing view that outdoes the sight of Birkenhead from a hill to the north of Oldham.

Capitol Reef is so named because of the claim that the white rocks of Capitol Dome (pictured) look like the Capitol Building in Washington DC.  My own view is that it looks more like a walnut whip in white.  But I don’t think that holds with the locals.

Capitol Reef is a cheap National Park.  A third the price of many others and one I chose to ignore on a visit to the area two years ago.  Big mistake.  It’s a cracker.  With a great scenic drives which finishes with a couple of miles along the canyon floor at the end, surrounded by huge multi coloured cliffs on all sides.

A short walk at the end as the road ended and the trail began.  With my limitations we didn’t go far, but what is clear is that I can have good days and bad days.  Mobility is clearly better than it was three days ago.  But I don’t think it will be good enough to do a three mile walk to one of the iconic Arches locations today.  I booked the whole trip around doing that walk, but I think I know my limitations today.

Evening food has been fun for the last two nights.  We’ve managed to find extraordinary locations to sit, talk and eat for a couple of hours.  Last night we drove 14 miles up a road to discover a steak restaurant with its own wine and views to kill for over the Colorado River.  Red rock cliffs overlooking us as the sunset changed the patterns in the stones.

The night before saw us eat in a restaurant located at the bottom of a mini version of the Grand Canyon.  Ok, not quite the same thing, but the sun, the rocks, cliffs and shadows all played a part in a fun evening.

Today we’re going for the double.  Canyonlands and Arches.  Probably a little more to the former which was where Thelma and Louise ended their journey heading over the cliff edge.

It’s a fabulous place.  Pool and hot tub were welcome last night.

The Blue Utah Skies

The Blue Utah Skies

Friday and Saturday saw rain, cloud and general atmospheric unpleasantness.

Today we hit the road.  The skies were blue.  The scenery splendid.  This is why I’ve come back.  A trip down memory lane, yes.  A chance to share somewhere magnificent.  And at last the weather has come good.

Driving in the heat with Steppenwolf, Born to be Wild playing loudly.  It doesn’t get much better.  Although Tom Petty’s Running Down a Dream rather captured the spirit.

Bryce Canyon was our main plan for the day and, although I struggled to appreciate it last time I was here it somehow felt better.  Looked better.  Was better.

An evening of steak and a night in a “luxury cowboy cabin” awaits.  And I’m going to enjoy every second of it.

Australian Challenge

Australian Challenge

Awake at 1am.  The knowledge of my growing pelvic tumour is very much on my mind as I slip into a Utah Sunday.

I’ve always hoped my medication will hold off the progress of this cancer for as long as possible.  Now I’m hoping that the doctors say I can have a drug that adds months to life expectancy.  There’s almost a feeling that it’s not worth it.

But I’ve got an amazing son.  An Ashes trip booked.  And Rachel, a lady who offers unlimited affection and support.  I’m struggling with the pain in these early hours but I owe it to many others to keep up my fight.  To keep up my hope that I can cling onto life for some new treatment.

Oncobabe advised against this trip.  Risk of the tumour leading to a leg break.  I’m uninsured if that happens.  At least the Aussies have a reciprocal health care arrangement with the Brits.

While the Australia trip is lots of solo flights I will need to handle my luggage regularly.  Big suitcase.  A carry on bag that I intend to reduce further in size.   Fagging it through airports hasn’t been fun.  Lighter loads are necessary, especially without a trusty companion on hand to assist.

Airline special assistance services will be used.  My expectations of myself need to be lowered.  But, despite my discomfort, I’m committed to the trip.

While I struggle, some eight hours behind UK time, I realise that the next two months are unlikely to see more foreign travel.  My sister’s Anglesey residence might be worthy of a few days away, but between leaving Vegas in a couple of weeks and heading off to Oz in mid-November rest is important to me. Denmark, Berlin, Vesuvius.  All on hold.

Maybe new medication will improve my failing mobility.  But rest has suddenly become more important.  Rest before a big personal travel challenge that will fulfil my sporting ambition.  Seeing The Ashes in Australia.  I’ll be devastated if I miss out.

Cloud Inversion Blocks Grand Canyon View!

Cloud Inversion Blocks Grand Canyon View!

It was a simple plan.  Lunch at the Grand Canyon North restaurant.  Admire the spectacular views while eating reasonably priced food.  Quick drive around the viewpoints and back to our hotel.

Not quite to plan though.  The day started with heavy rain.  The drive to the Canyon was blighted by the rain.  Arrival meant rain.

We wandered down to the impressively located eating place and eventually got a much desired window table, looking out across the Canyon.  Eventually because we asked for a table at 11.15am.  Who knew Utah and Arizona operate in different time zones.  I thought it was an hour later!

Views of cloud.  More cloud.  Changing cloud.  Eventually it cleared.  Partially.  Occasionally.  And pictures could be taken over Alaskan cod and chips.

It wasn’t quite perfect.  But it’s a spectacular location.  And just occasionally the rather irritating cloud behaviour gave the opportunity for unbelievable photos.

It is a reminder though that nature’s unpredictable ways can often impede our ability to admire it’s wonders.

 

Zion, Immobility, Hope

Zion, Immobility, Hope

It’s been a fabulous day.  Zion National Park is an amazing place.  A green desert.  A gentle river valley.  A place of dramatic flash floods.

We came, we saw, we overpaid for a beer and we left.  The immobility that began to haunt me in my last week in Chile has continued.  My walking stick helped supply balance, but any pretence of pace and confidence is gone.  Put simply, I’m a slow man.  And in better times I’d have seen a lot more of Zion’s walks, pools and stunning natural beauty.

Pizza, wine and a bath finished off a lovely day and I nodded off early.  An hour later I was wide awake.  In pain from my growing pelvic tumour.  I threw down some paracetamol and chose not to take anything stronger.

As I sat, my afatinib side effect kicked in.  A dash to the loo to deal with it.  Vague thoug

Yesterday it needed to be somebody’s fault.

The easiest target in my head was Oncobabe. After all, I’d told her in June that I was feeling pain that felt similar to the agony afatinib had removed last December. Take more painkillers and we might scan if you come back in six weeks feeling the same. I did. And look where I am now!

But what would it have changed? Bad news sooner. Next drug sooner. Next drug failing sooner. My tactical game with this illness is to play for time until they invent a cure. My body seems oblivious to my tactics though. I’m running out of time.

I wondered about doctors and physiotherapists who were slow diagnosing my cancer originally. A simple X-ray would have shown it. But even then I didn’t know about it until it had hit the bone. By then I was a dead man walking anyway. But might have saved my lower spine. All thoughts I’ve had before though. And put to one side before. What will be will be.

I wish my work colleagues had been cancer experts. I wish I’d acted on Internet references to bone cancer when suffering a bad back. But again, I was already too far gone for it to change any prognosis.

That vague grumble from my lungs was perhaps the moment I should have seen my GP. And demanded an X-ray or scan. But even then I suspect it would have reached bone and lymph nodes before any surgery.

I want to hit out. Blame somebody. Even if that’s me. The reality is shit happens. And this time it was my turn. Just unlucky. Very, very unlucky.

hts that this unpleasant side effect may mean the afatinib still has the ability to downsize my new super-tumour.  Unlikely, but I’ll think it for now.

I then sat in the dark, 7am uk time, 11pm USA west coast time, and researched osiminertinib.  Again.  Improved comforts.  Moderately extended life.  I wonder if I’ll qualify?

There are things in my life I desperately want to stay around healthily for.  It shouldn’t be my time yet.  There might be new immunotherapy drugs just around the corner for me.  I’m not scared of dying.  But I sure as hell don’t want to yet.

Wanting to Play the Blame Game

Wanting to Play the Blame Game

Yesterday it needed to be somebody’s fault.

The easiest target in my head was Oncobabe. After all, I’d told her in June that I was feeling pain that felt similar to the agony afatinib had removed last December. Take more painkillers and we might scan if you come back in six weeks feeling the same. I did. And look where I am now!

But what would it have changed? Bad news sooner. Next drug sooner. Next drug failing sooner. My tactical game with this illness is to play for time until they invent a cure. My body seems oblivious to my tactics though. I’m running out of time.

I wondered about doctors and physiotherapists who were slow diagnosing my cancer originally. A simple X-ray would have shown it. But even then I didn’t know about it until it had hit the bone. By then I was a dead man walking anyway. But might have saved my lower spine. All thoughts I’ve had before though. And put to one side before. What will be will be.

I wish my work colleagues had been cancer experts. I wish I’d acted on Internet references to bone cancer when suffering a bad back. But again, I was already too far gone for it to change any prognosis.

That vague grumble from my lungs was perhaps the moment I should have seen my GP. And demanded an X-ray or scan. But even then I suspect it would have reached bone and lymph nodes before any surgery.

I want to hit out. Blame somebody. Even if that’s me. The reality is shit happens. And this time it was my turn. Just unlucky. Very, very unlucky.

When You’re Feeling Down an Upgrade to First Wins

When You’re Feeling Down an Upgrade to First Wins

I spent a few minutes this morning looking for a first class upgrade between Heathrow and Vegas. Business class is nice. First class is exceptionally nice.

I was thinking “screw money I’ll pay £200 each to upgrade if the computer lets me”. It demanded a phone call, so I didn’t bother.

Fast forward to the Cathay Pacific lounge in Heathrow terminal three. Having had two breakfasts courtesy of the Dublin Airport lounge and the BA flight to Heathrow, I avoided the impressive noodles, enjoyed a Prosecco procured by the fragrant Rachel and wandered off to the gents. On exiting, I noted our gate number and rounded up the lady. The longest walk ever from lounge to gate.

Rachel, seeking out the business class queue somehow jumped the priority boarding area to get seen first. Bar code on the boarding pass scanned red. The word “shit” went silently through my head. “You’ve been upgraded to first”. An instant “get in” followed by “shit, what about me?” went through my head. Followed by a more polite “have I been upgraded too?” – answer a decisive yes!

I had priced up this trip in first a few weeks ago. Some £12,000 more expensive than business class. Not even considered! I’d been keen to blow my stash in light of an ever decreasing life expectancy to the tune of £400. Presumably they’d overbooked the cheap seats and undersold the posh ones. We were shunted to the nose of the plane as a result. More room for my feet. Easier to stretch my aches. Better food.

Do I complain about losing my window seat? Do we get a higher number of first class Avios for what was a business class booking? Why couldn’t they tell us earlier, allowing us access to the first class lounges?

I think I’ll lap up the extra luxury, the free pyjamas (my third pair) and highly attentive service. I’m a mere silver status member of the British Airways Executive Club. Rachel an unimportant Blue. Slightly surprised to get shunted up a level. But deliriously happy after a bad day yesterday.

Finding a Smile

 

Finding a Smile

I’ve not quite got myself back to happy yet.  A difficult night didn’t help.  But I think I’m going to be fine, most of the time, for this trip.

Good company helps.  Yesterday was the first time I’ve feared death since all this began.  Today that’s progressed to a sadness for those I’m leaving behind.  Tomorrow I’ll be in “there might be a cure” mode again.  But the chances and timescales are definitely working against me.

What has revealed itself is a desire to spend faster. Although there’s no availability I awoke willing to upgrade to first class between Heathrow and Vegas.  And I’d have paid £hundreds for it.  I’m keen to set the kids up if they lose me early, but equally I now feel even more free to treat myself and others.

Australia is a concern.  Solo travel pain, will I be well enough?  I am totally committed to that journey, but may limit travel before then and the hot tub at my sister’s Anglesey home is looking more fun the Copenhagen or Berlin.

Meanwhile, Viva Las Vegas!

Tumour Returns – Well That Explains My Discomfort

Tumour Returns – Well That Explains My Discomfort

Back to Oncobabe where weight and blood pressure were stable. Good start.

Then the appointment began late. And the devastating sight of the MacMillan nurse told me this wasn’t going to be fun. And I was right.

The results of the scan were shared. Top half positive – no change. Right hip seeing tumour growth. Explaining my pain. And confirming a change in direction for my cancer. Afatinib survival rates average 32 months. I’m nine months in and the drug is now virtually useless.

I was immediately taken for a blood test. There’s a 20% chance that will reveal another gene mutation that will open the door to another drug. Osiminertinib. 2% of patients receiving this showed no signs of cancer after a year. That said, average survival rate on the drug was just short of a year.

If the blood test shows nothing (80% chance) I’ll be welcomed back from the USA with a bone biopsy. That may reveal the gene mutation too. 60% chance.

Miss out on that and we’re talking find a trial or chemotherapy. The latter doesn’t appeal.

Our flights to the USA have started in a sombre way. Hopefully my enthusiasm will improve overnight in Dublin. This needs to be a special three weeks. I’m going to do my best to make it that.

Medication That’s What You Need

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