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Seeing the World

Life has served up a fantastic opportunity to travel

It’s Time To Travel

Hi there.  I’m Dave.

I hit 50 years old in January 2018 and intend to travel while I’m able to do so.  This blog documents some of the thinking, planning and doing that goes into things, as well as sharing other events that may happen in my life.  At present, my treatment restricts me to the uk.

In November 2016, despite never having smoked, I was diagnosed with incurable lung cancer – stage four, it’s spread to the bone.  The initial treatment was a pill a day and gives a prognosis that would get me through to the middle of 2019, but it became resistant well before the end of 2017.  My chances of being among the 14% of us get to five years are probably well below that 14%.

So far I’ve visited Malta, Slovakia, Iceland, Slovenia, Montenegro and Northern Ireland.  Then New England, Chile and the USA South West.  Currently on a medical flight ban!

THE LATEST CHARITY BIT:

Roy Castle Lung Foundation in Liverpool.  People who go the extra mile to answer the questions the oncologist doesn’t know.  Well worth a donation.

https://www.justgiving.com/fundraising/david-stringer2

2016 – An Extraordinary Year

It all happened.

I became the healthiest I’ve been as an adult. A health kick I’d started a year before saw my weight loss total 100lbs. I was walking ten miles a day in the spring months. I felt really good.

My divorce came through. While there’s a sadness about that, I felt happy within myself.

My employer of thirty years put me at risk of redundancy. I managed to cling onto a role by dropping a level to cover a maternity leave. But I knew I’d have a battle to remain employed after May 2017.

I travelled solo to Madrid which became my favourite city. I’m not really a fan of metropolis, natural wonders is more my thing, but the transport, the historic buildings and the two football stadia made me a fan. It was also where I learned the benefit of starting a city break with a free walking tour. That €10 tip was well worth it and helped me fill the time for the following days.

My son Chris joined me on a trip to Yellowstone. What a wonderful place that is. We took a loop route out of Denver through Colorado Springs, the wonderful Pagosa Springs (a place to enjoy natural hot springs), Chris slept through the magnificent Ouray and Silverton but we both got a kick out of white water rafting the Colorado River at Glenwood Springs before heading to Grand Teton, Yellowstone in all its splendour and a drive over the extraordinary Beartooth Pass.

My good health at the start of the year did take a couple of knock backs. I injured my shoulder in January after playing badminton rather enthusiastically after a thirty year break. The middle of my back suffered excruciating pain in April (the doctor prescribed Cocodamol) and my lower back gave me real grief, including sciatic leg pain, which nearly cut the Yellowstone drive short.

i utilised my employer’s BUPA and was referred for physio. While I enjoyed the Lycra clad ladies giving me some attention it didn’t work and three months later I was referred to a neurosurgeon.  It was now September.

This guy looked at my scan and said he thought I had myeloma – a form of blood cancer. This was a shock, more so the bit when I checked online and saw an average five year life expectancy. Whatever it was had eaten away at three of my verterbra, T7, L4 and L5. He recommended verterbroplasty on the L4. Basically pumping in cement to stabilise my back and hopefully reduce pain.

It did reduce pain, although I found walking over the next six weeks uncomfortable and slow. A half hour walk was now taking forty minutes. My multiple pains had, however, reduced to a single trapped nerve in my buttock. Painful, but so much better than things had been. At the same time I developed Bell’s palsy, one side of my face dropped and my eye refused to shut, even at night.  That’s a curse that has been with me over a year.

The day after my operation came another shock. A CT scan had shown up something small in my lungs. Google told me that if I had lung cancer and it had spread to the bone I had six months to live. The private oncologist I saw a week later didn’t put a time on it, but he confirmed the myeloma thought was wrong. I did have lung cancer and he referred me back to the NHS. My employer’s BUPA doesn’t cover secondary cancer. He didn’t tell me that as well as my spine my pelvis, ribs, sternum and lymph nodes were under attack too.

While the NHS might not have wifi on the wards like the private hospital did, they do seem to have a relatively efficient cancer programme. A biopsy of my lymph node revealed a genetic mutation in my cancer and my new oncologist prescribed afatinib. The joyous side effects of diarrhoea, rash and acne remained a few weeks later, albeit less severe, seemed a small price to pay for an extra couple of years life.

Indeed, six days into this treatment, I became pain free. That last pinched nerve had been driving me mad but it just disappeared. I’d been taking a mix of four pain relief drugs which were suddenly not needed. My forty minute walk became half an hour again. I was still less stable than I had been, but felt quite excited. Maybe coincidence, maybe the afatinib had zapped something unpleasant. Sooner or later the drug will stop working but, at that point in time, I like it.

With a sick note issued to the end of January I saw the likelihood of finding a new role with my employer before redundancy kicked in at the end of May diminish. The desire to put myself through the interview process wasn’t there. And then it struck me. I could travel once I’m not working. Indeed, I should start the travel pretty soon because if I’ve only got a couple of years and some of that time will see me deteriorate then the sooner the better.

I decided to embrace the idea of redundancy, which would include a substantial pay-off. The idea of travelling on a sick note didn’t sit comfortably with me. So I emailed my union leader to enquire about the likelihood of garden leave for my three month notice period March to May. He made enquiries and said I’d hear from my line manager after Christmas.

Suddenly I’ve gone from wanting to get back to work to wanting to get on a plane to wherever. 2017 is now a year of opportunity. Perhaps my only opportunity to see more of the planet.

 

Featured post

The Where the Hell am I Moments

It couldn’t be simpler.  Go to hospital.  Get fixed.  Go home.

Except they can’t fix me.  And one day they won’t send me home.  And hospital disorientation is driving me absolutely nuts.

It’s not just which ward.  Or which hospial.  It’s which county.  I am regularly waking up not knowing where I am, what investigation or treatment I’m in for or where I’m going next.

Lacashire or Yorkshire.  Oldham or Rochdale.  Huddersfield, Halifax or Leeds.  I’m sure there’s somewhere else I’ve visited too along the way.

Im sure there are good financial reasons for a multi-centre approach to patient treatment.  But it’s not something that works well for me.  I feel like I need a foundation for my treatment.  A simple base.  At the moment I feel bewildered by where I’m going each day, who’s going to transport me and what’s going to happen at the end of the travel.  A lack of control and understanding about the whats and wheres.  I don’t care for the whys either!

And genuine confusion about the shape of my days as I’m shoved between wards, wings and completely different towns, while stacked up with morphine and various other drugs.  I thank the patience of those who I keep asking very similar geographical questions of.  Even if I’m not quite able to keep up with all the answers.

Nil by Mouth – I Ask For Soup

Oncobabe has referred me for a brain scan.  This is a slight concern as I’m banned from driving if it shows anything unpleasant.  What will be will be.

This morning has been one of over-relaxed bladder.  Not extreme, but a pressure I should have avoided using the cardboard devices supplied on ward.  This afternoon brings a new scan.  They suspect there’s nothing new to see, but want to check anyway.  My loopiness is not normal!

Then the luscious Rachel is scheduled to appear later to entertain me.  I’ve no idea what I must be putting her through, but I’m very glad she’s there.  I’d like to feel I’m still there for a good few years yet, but it’s not looking great.

Curtains have been opening and closing all morning.  Blood pressure has been tested at alarming regularity and my presence on the planet continues to feel like a blur as the drugs numb my faculties.

Is it Thursday or Friday?  I’ve just asked for soup.  I’m nil by mouth!  Cancelled!

There’s a Nutty Woman in my Room

For the second time in recent weeks, my personal space has been invaded by a nutty woman.  It’s 3am.  My cancer is flaring up in my pelvis.  I sit up on the side of my hospital bed to ease the pressure on it and stare out of a window through the blind slats.

The door to my private room, presumably an isolation room, opens.  I don’t have the ability to swiftly spin around but as the door opened the lady involved immediately addressed me with the words “it’s time for me to go, when are you going to let me out?”.

I know the NHS has a few vacancies on the books but I didn’t realise I’d been appointed to make such decisions during my tenure.

She takes a seat and starts demanding that I help her with her two heavy bags.  Sod that, I’ve travelled light and fear I’m going to struggle to carry my meagre bits and pieces home with me.

I politely said “I’m a patient and think you need to find assistance elsewhere”.  She muttered something and stayed seated for a couple of minutes.  I remained unmoved and didn’t look at her.  Eventually she left without speaking.

I seem to be attracting such situations.  But they’re certainly not a choice.

I have woken up groggy this morning but successfully made it to the bathroom.  I think my mind is clearer about where I am.  The doctor visited.  I recalled her from my September visit to the ward where she described by medical notes as making me the most unlikely man in the world to get a dose of lung cancer.  Still, she reckons they’ll discharge me this afternoon with some antibiotics.

I forgot to mention my nocturnal visitor.  I am fairly sure she was real though.

 

My Land of Confusion

Yesterday started well.  I woke up.  I then had a knock on my bedroom door.  Chris opened it.  A real shock because I had no recollection of him having stayed over, until I saw him.

Now I’ve certainly had memory lapses in the past, but this felt overwhelming.  Not remembering telling your son he could stay?  Weird!

In other news I’d agreed for Louise to visit me today.  Contacted her by telling her it was Saturday.  It just wasn’t.

Dave was not with it and was sharing the information well with his kids!  Even today, I’m not quite there.  It appears I had a temperature and some sort of infection. A series of nursing staff started asking me about my weeing abilities.  They’d become “unavailable ” to “run like Usain Boult or you will wet yourself”.

Regardless, I was in hospital, had company and was running a temperature.  Despite which, the bed didn’t feel in any way sweaty.

Breakfast arrived.  Porridge I think.  A trip out from Huddersfield infirmary to the hospital in Halifax to be assessed.  A suggestion that my growing confusion is down to a water infection.  Lovely.  Some IV antibiotics have since followed since my return to Huddersfield.  The body temperature has also moved up to 38.8 Celsius before subsequently reducing.  Good work antibiotics!  Pins and needles in my right leg have subsequently returned which is annoying me.

My thinking has gradually become more measured and less bizarre, so fingers crossed the amount of nonsense I’ve been thinking has reduced.  I’ve certainly suffered more jumbled thoughts in recent days.  They’re still not totally eradicated from my thinking but I’m more easily able to spot them and resist sharing them.

I still have my private ward.  I prefer it to more sociable areas and it’s easier to hear  my visitors.  I hate my one eared deafness!  I also quite enjoy the solitude option once the visitors leave.  The noise still echoes along the corridor but I feel happy in my own company while retaining the ability to talk to the outside world online.

I’m not sure what tomorrow will bring.  A CT scan is likely to help clear up any concerns about the cancer spread.  MRI and X-ray results are already outstanding.  I have found, even in hospital, the energy needed to get to and from these tests feels huge.  That’s with a porter pushing me!  I think there’s a chance they might discharge me.  But nobody has suggested this, so I’ll wait.  What a shame I no longer get £100 nightly for an NHS stay paid for by BUPA.

Ill probably sleep early again.  I’m sleeping longer most nights and while that probably isn’t a good thing I’ve not felt keeping myself awake is a good idea either.  Go with the flow.

 

Spaced Out

I’m not quite with it.  My ability to recall my plans for the day has become sketchy.  I can make a firm decision and within half an hour my mind has turned to mush and I have no recollection.

I don’t think it’s the drugs.  I just think my short term memory has desserted me.  Granted, it hasn’t been perfect for decades, but at the moment I can’t recall the general outline I’d put in place for the day.

This could become serious.  I was getting confused between rewriting my blog and seeing the doctor during the week.  Fortunately I avoided any potential embarrassment.  But finding a way to be a little more with it would be a good thing.

 

Feeling Meh

For a lot of the time I’ve known I’ve had lung cancer I’ve felt OK.  Tired occasionally.  But usually getting on with my retired life as normal.

As the pelvis has lost strength that changed a little.  It’s now over five weeks since my last chemotherapy and, truth be known, I feel rubbish.

A run down feeling where I’m struggling to do anything at pace.  Returning aches to the right side of my right thigh.  Minor pain in what I assume are the tops of both lungs.

From enjoying multiple holidays last year, hence the name of the blog, I’m now keen to squeeze a bit of enjoyment out of my days in.  Getting out is tiring and I need to prioritise appointments before seeing how I feel.  Just getting a lift to a hospital and back is a tougher mission than I’d ever believe.

Today sees an afternoon return to Oncobabe.  I need to ask questions about radiotherapy- why hasn’t it happened?  My biopsy result and how that changes the course of treatment.  And referrals to join medical trials.  Atezolizumab, the new immunotherapy drug she said wasn’t yet available on the NHS even though I knew it was.  I delayed challenging her assertion until the biopsy results are in.  That’s today.

Ultimately I feel pretty ropey.  A few minor aches.  Little get up and go.  Little desire to eat and little desire to do anything.  It’s a circle I’d like to break, but I’m not sure my energy levels are up to it.

Just Full of it

Continue reading “Just Full of it”

Pain Relief Failure

As the bank holiday draws to a close, a rather nice Yorkshire lady pours me a glass of wine.  A pleasant evening in is planned and then the pelvic pain screams at me.

First drug, paracetamol.  Failure, but it gives me a chance to pay a visit before constipation causing drugs have to be taken.

Second drug, slow release morphine.  Twelve hours of possible sleep, and a high chance of an early end to a pleasant night in.

I pack my bag ready to leave in the morning.  Leaving the drugs next to the bed as some may be useful in the night.  Not the motphines though.  I swig rapid action morphine and it seems to numb the pain rapidly.

Amitriptylene goes unused, for now.  But if my right leg starts shaking in the night I won’t hesitate.

Staying awake much beyond 9pm with this lot inside me seems unlikely.  But sleep and these stronger drugs are my plan C.  Plan D is get on a morphine drip at the hospital. I could do without that.

Thursday is when Oncobabe updates me on my treatment options.  It can’t come soon enough.  I can’t believe radiotherapy hasn’t already happened.

Will I Be Around to See Them Come Back Up?

Oldham Athletic have been relegated.  While not a shock, the bland and passionless draw at Northampton on the final day of the season summed it up.  Needing a win to survive, they didn’t exactly throw the kitchen sink at it.  If they had I’d probably be suffering more at the failure to score a winner.  But they passed the ball around thinking they were Barcelona, created few chances and could easily have lost.

So League Two it is.  For Chris it’s the first time they’ve changed division in his life.  I remember them in the Premier League.  Playing a League Cup final at Wembley.  Being everybody’s favourite second team.  But Saturday’s failure takes them to the bottom.  Except Tranmere and Stockport will tell you there’s further to drop.

For me, I’m wondering will I be alive to see them next season.  That’s August.  Chris will be wondering will they ever go back up.  May next year at the earliest.

That new owner doesn’t seem as exciting as he did in January.

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