Seeing the World

Iceland in March was a magnificent experience.  But despite numerous late evenings parked in a lay by, the Northern Lights failed to materialise.  Cloud cover the main offender.

I wasn’t on Anglesey last Tuesday.  But the aurora turned up, adding a green glint to the night sky.

Friday night’s trip to the top left hand corner of Wales might, just might, coincide with clear skies and a massive solar storm.  If we are lucky.

If not, we will cope with the back up plan of hot tub, prosecco and the beauty of a cold night.  Although the dash from hot tub to accommodation will demand a brave moment.

Maybe the red squirrels will appear in the morning too!

Flashback to Chile

Having got off my backside and seen a bit of the world this year, I keep getting reminders of pleasant moments from my travels.

The caption above rolled across my Facebook page this morning and instantly reminded me of various parts of my trip to Chile with Chris.

He bought an alpaca wool jumper in a San Pedro market shop which he was rather proud of.  I got Rachel an alpaca wool scarf.

But the main memory triggers were for the El Tatio geyser field.  14,000 feet up in the Andes it’s the highest place I’ve ever been while staying on land.

The ice cold coach journey.  The relief of warm coffee as we awaited the dawn.  The sun appearing from behind a cliff and moreorless instantly melting ice releasing the pressure of the geyser high into the sky.  Giving Chris a perfect photo opportunity.

Our guide that day gave Chris special attention.  His student ID had gained an admission discount but more importantly revealed his status as a geology student.  Between generic explanations for the masses, Chris got special one to one treatment with more specialised information about our location shared.  I shivered.  But listened in all the same.

As we descended the hill we spotted a herd of alpacas by the road.  Except they weren’t alpacas as there are none left in the wild.  They were vicuña.  A species I’d never heard of.  And apparently quite rare to see so many together.

I like to think I’m familiar with most mammals, but reflecting now, despite the biting cold of the Andean winter, it was quite an exciting moment to “discover” a new animal.  Even if it was only new to me.

I don’t think I’ve used the term “making memories” before but there was something special about that trip.  Ignoring my illness, there’s always a chance that it’s the last time I get to go away with Chris for an extended period.  And I think we’ve both come away with some amazing memories of an extraordinary country.

As we descended we stopped for lunch.  A small mountain village with a rather basic row of tourist shops and a grill running outside.  I don’t recall seeing much in the way of a wild llama population while we were there.  But I can heartily recommend a llama kebab if you ever get the chance.

Another Year Until I Join The 17,000

The two charities who have provided practical support to me are Roy Castle Lung Cancer Fòundation and MacMillan.

The Roy Castle people have been brilliant at providing drug information that just isn’t online.  A direct line to Astra Zeneca on my behalf.  Answering questions that were beyond Oncobabe either due to knowledge or time.  They’re also a research body that may, at some stage, magic up a cure.  That remains a long shot for me but it’s all I’ve got so I support them.

MacMillan are, perhaps, more practical.  Rather than seeking out the cure they hold your hand through the process of diagnosis, treatment and recovery for some, dying for others.  For me they triggered the paperwork that generated my Personal Independence Payments.  In turn that gave me access to the motobility scheme meaning I have a reliable car to get around in.  Their other work seems to be very focused on financial support.  Working with energy companies, banks and the like to cushion the financial blow of cancer.

If I’d quit work on health grounds and not had a permanent health insurance policy I’d be struggling financially right now.

Which brings me to a story I spotted in the news this morning.  Living longer, as I hope to, with advanced cancer brings new challenges to cancer sufferers.  It’s obviously an article that’s close to home.  I’m only half way to their definition of “living longer”.

I see the term “scanziety” for the first time.  It takes ages from scan to scan results.  Over three weeks for me last time.  Not much quicker when the private sector had me.  I’m not sure I get overly stressed during that time now, but others do on my behalf.  And waiting isn’t fun.  And you do wonder if a bit of overtime from radiologists can clear a backlog and get faster results to consultants and patients forever once that backlog is cleared!

The reference to multiple hospital appointments in the article rings true.  Halifax this week, Huddersfield next week.  GP for pain relief.  Podiatrist to sort out my feet. It’s not quite running around like a blue arsed fly, as I can’t really run, but it’s actually quite draining.

I live with guilt.  Rationally this is nuts.  I’m guilty of nothing.  But I feel guilty for putting my family through this.  I feel guilty for being part of Rachel’s life when this all started.  I’m not racked with guilt in an extreme way.  It’s not something that will lead me to bizarre decisions.  But it’s there.  And will never leave.

The article goes on to talk about Personal Independence Payments coming to an end.  I’m supposedly entitled to this money until December 2019.  And the car too.  But a four month delay between benefit ending and being renewed?  That is a truly awful system.  I might not last that long, but the idea of fighting bureaucracy and losing access to a car for months when I’m at my most vulnerable is not appealing.

I often find it tough to fight my corner.  I’ll go with the flow a lot of the time.  Not always a bad thing as “the flow” is often well intentioned, but it’s not always personal or efficient.  Weakened by this illness I find standing up for myself tough.  I don’t think that will go away if I survive longer.  I hope to join the 17,000 longer lasting advanced cancer sufferers next year.  I hope the system is skewed more in my favour by then.

Here’s a link to the story on the BBC web site.

A Nice Problem to Have?

All the refunds from the Australia cancellation are now in.  Special thanks to Isn in Perth for assisting with me obtaining cash out of Qantas when a credit note was the original offer.

This leaves me with an interesting problem.  I now have three credit cards significantly in credit as a result of all these refunds.  Not to mention reduced levels of accrued cashback and Amex points!

My usual approach would feel to spend my way out of the situation.  But the sums total almost £3,000 and I just can’t see myself spending money that fast in my current no fly environment.

If I can be bothered, I’ll ring the card companies up and ask for a refund.  But I’m not sure I can be bothered with call centres at present!

Night Time Discomfort