Seeing the World

Ouch! That Hurts!

A terminal lung cancer diagnosis comes with perks. The blue disabled badge is welcome for making parking easier. And often free. The mobility car has magicked up a BMW for me. Well it’s nice to see out life in a sexy car. Five years free prescriptions too. Quite handy given the array of painkillers I have lined up in my middle drawer. Free hospital car parking too!

Indeed, apart from the restricted movement, pain and certain death it’s quite a good deal!

Alas, the last two nights have featured pain. It could be that the pelvic damage is interfering with the nerves. It might just be that I’ve been lying at the wrong angle. Or, and perhaps most likely, there’s a little tumour flaring up towards the top of my pelvis. The pain radiates out in the way it did last time I had a tumour regrow.

Now it is possible that this progression could yet be checked by the osimertinib. I was convinced a few weeks ago that a new pain a bit further to the left was cancer returning. But time seems to have seen that fade away.

The last two nights have been identical though. Take a bedtime naproxen, get to 11pm and suffer. Paracetamol first. No effect. Give it an hour or so. A single amitryptolene. The knockout blow never came. Two tramadol next. Pain recedes a little and sleep eventually arrives. When I wake up late morning the pain has virtually gone and the area affected just feels lightly bruised.

I’ve avoided the slow release morphine pills because previous experience tells me they destroy my next day with a feeling of high and excessive sleep.

I am nearly out of tramadol though. They haven’t been prescribed since 2015 as other drugs and pain free runs have been effective for me. Hopefully my GP will approve my online request for more.

Meanwhile, the inevitable worry about the progress of this latest pain is on my mind.

Minus 70 Celsius!

January 7, 2018 1

Minus 70 Celsius!

Last June saw our first class New England trip. I’m still a proud wearer of the British Airways pyjamas that came as part of the luxury flying experience that month.

Of the many trips on our driving holiday that fortnight, we made it to the top of Mount Washington in New Hampshire. A narrow winding road to the summit giving excellent views over a very green countryside below.

And a visitor centre that enjoyed telling us about world record wind speeds measured at the summit decades earlier.

Tonight, according to the BBC, the extreme cold weather hitting the east side of North America will lead to a temperature of minus 70 Celsius at the summit. Minus 95 Fahrenheit in local money.

The report doesn’t mention wind chill factor. But it’s hard to imagine that’s where the mercury has gone. Still, while our visit may well have been late spring / early summer, I’ve got a little feeling of excitement that we’ve visited somewhere that has subsequently reported extreme weather of this nature.

And the low gear, overheating engine risk drive back down the mountain was a little hair raising too. I’m not sure I’d fancy it tonight!

Renewing the Railcard

January 5, 2018 1

Renewing the Railcard

It’s nearly a year since I got my Disabled Person’s Railcard. I had to scan my blue badge award letter and pay £20 for the privilege. £54 for three years seemed a bit optimistic.

Now I’m due to renew. I’ve used it to see the Settle to Carlisle line. And glorious defeats at Southend and Plymouth. Not to mention a 4-4 draw at MK Dons. Discounted fares for me and my carer!

The odd thing is I didn’t feel disabled when I got it. While by no means confined to a chair, I do now.

I usually only renew railcards when I know I’m going to travel again. Usually little point paying for a card when you’re not travelling for months on end.

This time I’m renewing immediately. They want paperwork resubmitting if I don’t. And I can pay the £20 costs using £10 of Tesco Clubcard vouchers. They’d usually only end up buying 2,400 Avios so I’d say the railcard works better for me this year.

A Few Things to Do …

January 4, 2018 1

A Few Things to Do …

There are a few exciting events opening up over the next few weeks. After the New Year Shropshire hot tub experience, this week has been a little more mundane.

A quick look at next week sees plans to deposit cheque refunds from Virgin Trains after their overcrowded run to Southend, see my podiatrist for the first time this year and find out from Oncobabe if I can fly again. Even if I’m not sure I want to!

There is also the risk that meeting will spell the end of osimertinib which niggles at the back of the mind as that would be much nearer to the end of the road.

I’m fifty in a couple of weeks and have invited family for a birthday Sunday lunch. That should head off any surprise party. An informal gathering before a blonde lady whisks me away for a whole week in the Anglesey hot tub.

I’m still to find time to feed the tigers – a leaving gift from work. The West Country awaits. I have two free nights from hotels.com which may aid that. I hope the stripey creatures are being fed while I sort things out!

Matt, my eldest, also fed my hot tub desires with his gift at Christmas. An afternoon hot tub and evening meal in Wetherby. I need to book that.

I’ve also got two other free hotel nights to use up. One with Hilton and another with Holiday Inn. I’d usually save those for a driving holiday overseas, but might just be better allocating them to an away day with Chris or a night away with Rachel.

Things to look forward to. Just not too far forward.

Confused Clearout Mentality

January 4, 2018 1

Confused Clearout Mentality

I think I’ve settled into my new room quite easily. The bigger issue is around what to do with bits of my stuff that remain in the boxes that they’ve been in for two years.

Ive made a half hearted start on sifting through them. Some 1990s ties are getting chucked out. A collection of cables with old style interfaces can go – I’m not going to use them again. And how the hell did my passport end up where it did? I’ve recovered that to a place of safety, even though I might never use it again.

And therein lies the problem. Stuff that I’d retained / accumulated with a view to buying my own place isn’t of practical use to me. Binning it all before the cancer gets me feels defeatist. Dumping the job on my sister / kids is wrong. Keeping it when there’s nowhere in my room to store it not quite right. Even if it can be stored elsewhere in the house.

I spent part of November 2016 chucking stuff away to make my departure less demanding on others. But I thought I only had six months to live. A few weeks later a couple of years were added. Then they were taken away by afatinib failing. Although months may have been added by osimertinib.

I’m not totally sure why I’m keeping certain bits. I just feel unhappy chucking them out. Even if I never look at them again. I suppose if keeping them avoids a feeling of regret that’s a good thing.

But just sorting through stuff has brought the odd tear to my eye. It’s a bit like being proactive in preparing to die. And I’m just not ready for that.

New Year New Bedroom

January 3, 2018 2

New Year New Bedroom

If you’d asked me a few years ago where I saw myself aged 50, I wouldn’t have said renting a room in another bloke’s house. I’d have probably been quite shocked to see myself now.

But in my post-divorce world I’m happy. And ultimately that happiness is worth more than anything.

While wining and dining Rachel away at our new year retreat in deepest darkest Shropshire, and introducing her to the regular concept of “Oldham nil” on an away day in Shrewsbury, my landlord and his family were moving my stuff from an upstairs room offering quite a bit of space to a smaller option downstairs.

The steps have become an occasional problem for me, not least on my middle aged nocturnal visit to the gents, and I decided the time has come to bite the bullet and request a room move.

And while my new accommodation is a smaller room, kitchen and bathroom are nearer so any wear and tear on my declining bones is significantly reduced. As is the increasing risk of falling over and breaking my bones.

There is confusion. I now have to sleep on the other side of the bed. The charger for the iPad comes in at the wrong side. And I need to work out what to do with my suitcases and travel bags that don’t really fit anywhere now.

I also have three or four boxes of stuff that I like to have around me. Stored at a time when I thought I’d be buying my own place in future. Nothing of monetary value, but reminders of the kids. Often things they’ve bought for me. While logic would dictate I have no further use for them and they’ll just be a burden for others when I’m no longer around, I still want them near me. I still want to feel the love they were given with.

Maybe it’s a little win for the disease. But reality says there’s no point taking a risk of falling when I don’t need to. And I can carry on being happy without stairs hurting me a little each time I use them.

The Dice Will Roll – Maybe I’ll Get a Pass to 2019

January 2, 2018 1

The Dice Will Roll – Maybe I’ll Get a Pass to 2019

Well I’ve got this far. An achievement in itself. Next objective get through to 2019.

The big threat is osimertinib deciding my tumours are too clever for it. Then I’m down to a slim chance of getting onto a clinical trial where, if successful, I can sit there wondering if I’m on the placebo every time a part of me hurts a little. If not, chemotherapy. But that buys not very many months. Medical science still needs to add to the miracles it’s already gifted to me.

I’m 50 in three weeks. I want to see 51. All of it. Chris will, hopefully, graduate. I want to be there for his silly gown wearing party. Matt and Louise have so much life to live and both seem set to live it. And I’m very much in love with Rachel. Who’s easy going approach to life makes the desire to get more out of it simple to continue.

And let’s not forget the evil inheritance tax that will deny my kids a chunk of my pension if I don’t get to April 2019. A big driver in my survival instinct.

Yes, my bones are weakened by this disease. I never expected to rely on a walking stick age 49. My spirit is more cautious than it was just a few months ago. But I’m still here, for now. And with the odds massively stacked against me I still have a little fire left in my belly that wants to live. Wants to enjoy life.

So here’s to 2018. Good luck in avoiding that proverbial bus hitting you – getting to 2019 will be great.

Dreaming of Flying Business Class Again

January 1, 2018 1

Dreaming of Flying Business Class Again

I woke up with vivid recall of having flown long haul business class this morning. So vivid, I couldn’t recall the destination or the airline. Just a feeling of relative comfort from flying. Then felt a bit sore in my right hip. Welcome back to reality!

I am unlikely to fly business class again. I might not even fly again. Solo trips with anything other than the lightest luggage are out of the question. My body struggles to carry stuff!

But somewhere deep inside it seems I want to enjoy long range posh flying again. As long as there’s something worth seeing at the end of it.

This year’s flying has been amazing. First class (thank you Avios) to Boston and back a beautiful experience. Feeling looked after in the BA Boston lounge a particularly nice feeling. The £130 a bottle champagne also very welcome on board. Grand Siecle something or other.

Business class on Iberia to Santiago with exceptionally attentive service. Regular riojah top ups. Strange Spanish style food. And perhaps the most comfortable I’ve ever felt on a plane. Impressed by their A340 aircraft. And the annoying man in the Madrid lounge tapping away on his phone with the settings on “make a clicking noise every time I press a button”. Git.

Santiago to Easter Island was also done in business class on LATAM. Perfectly good seats, although it just felt not quite as good as what had gone before. And the horror of no access to a lounge for the return flight. The straw roofed hut next to a terminal much smaller than our plane presumably reserved for another airline. Not that I was aware of any using such a remote landing spot.

Then back to South West USA. Outwards with British Airways. Rachel inadvertently queue jumping to be told she’d been upgraded to first class. Brilliant moment. Then a panicked “have I been upgraded too?” met, fortunately, with an affirmative. The service was pretty disappointing compared to Boston three months earlier. But being upgraded for the first time in my life was good enough. Even if I did later read on the FlyerTalk forum about many frequent flyers preferring our original business class seats on the upper deck of the 747 to the plusher first class cabin.

Coming home our connecting flight from Vegas to Chicago took us over many of the sights we’d seen on the ground during our three week tour. Canyonlands as much a joy from 30,000 feet as on the ground. Better still, on landing, we had access to the American Airways lounge. I’ve been in the Admirals Club before in Philadelphia. Nice space. Miserable bar staff. Basic nibbles but no foods of substance. I expected much of the same here.

Instead, we were handed a slip of paper and sent to, I think, the second floor in a lift. Greeted warmly we were shown into The Flagship Lounge. It seems the Admirals Club is now for internal flying riff raff only! A wide range of warm meal options. Pour your own Bollinger without the need for a curt barman, and a feeling of light ambience needed before embarking on a seven hour flight back to Dublin. Only to arrive late, missing our Ryanair flight and needing to fork out for another! “There’s a £100 missed flight fee sir”. “Sod off I’ll book online myself” was pretty much the gist of that conversation. Still, pour your own Bollinger!

And if you think all these wonderful flying experiences have involved pretty amazing road trips too, it’s been a pretty amazing time.

Ironbridge, Telford Holiday Inn and Shrewsbury Away

December 30, 2017 1

Ironbridge, Telford Holiday Inn and Shrewsbury Away

I’ve never visited Ironbridge, but when Chris informed me he’s visiting his maternal grandmother this weekend and wouldn’t be joining me for two football matches, the idea of a New Year break away from it all was born.

New Years Day sees Oldham travel to Shrewsbury. Rachel in a moment of madness volunteered to attend. Google threw out some hotel options. And one in luxurious Telford ticked the hot tub box. Decision made.

It’s also a chance to see Ironbridge, which I’ve never viewed before. Whether that turns into a “right, we’ve seen it, where’s the hot tub moment” or something longer lasting remains to be seen.

Ive made two visits to Telford before. One was a recruitment fayre in around 2005. Stood in a sports hall persuading the young and innocent that a career in banking was a done thing. The other an unforgettable day in c1982 when Stockport visited Telford United in the early rounds of the FA Cup and the non-league Salopians battered the mighty County 3-0 in a day of high level hooliganism and a rollicking from my parents who didn’t know where I was!

Attendance at the Shrewsbury game is in doubt. Not because of the weather, but because the thought of a hot tub is close to outranking the quality of football based on recent defeats by Oldham.

It’s also an exciting day for the BMW. Rachel is now insured to drive it. This might help with my mobility a little!

December 29, 2017 1

Life has served up a fantastic opportunity to travel