Seeing the World

After Thursday bad news, my sister had the bit between her teeth yesterday in chasing down “The Matrix” clinical trials.

One of the things I’ve learned about this condition is that however hopeless the end result might be people want to help.  And being too proud to accept support doesn’t define my independence, it excludes those who care and went to help if they can.

Mark giving me free parking and transport to Manchester airport.  Anybody I’ve shared lunch with in the last year or so.  The Plymouth train strike recovery team who first got me to the ground and then got me home when the trains didn’t.  The matchday resident’s parking pass at Boundary Park.  My landlord for attending a diagnosis appointment in the early days and organising moving my stuff to my new downstairs bedroom.  My ex-wife and step daughter for transporting me over to Oldham to see Chris at a time when I couldn’t drive due to being a brain cancer risk.  My step son for getting me to the hospital appointment for the biopsy that got me onto the wonder drugs that kept me alive last year.  And anyone else who has helped!

My sister has attended most of my hospital appointments.  Taken notes each time.  And remembered some of the questions I forgot to ask for myself.  She’s also manged to get herself appointed as a lay person on a British Lung Foundation committee that makes key medical research funding decisions.  Access to top doctors who may be of influence.  Access to information about medical trials.

In October Oncobabe referred me for assessment to a medical trial called Matrix.  I’ve heard nothing from them, something I mentioned to Oncobabe when we met at the end of the same month.  On Thursday, for obvious reasons, the question was asked about what happens next regarding this.

First response “you’ve not exhausted chemotherapy yet so you don’t qualify”.

Second response “here’s a number for you to chase up Dr Jain in Leeds”.

A little shocked at chasing up my own referral.  Especially after receiving news that knocked me flat.  Yesterday I wanted to crawl into a cave and do very little.  So my sister started researching, reading and telephoning.  I’m not sure I’d have even bothered had I had to do it myself.

A 2.45am message from Helen.  “These trials require you to have seen off one treatment before you can be accepted”.  I’ve seen off two.  Helen thinks I qualify.

She spends much of her day reading further before picking up the phone.  No reply.  Chases up more numbers.  Contacts my MacMillan nurse who I’ve not seen in months.  Things slowly start to happen.

It seems that while my referral form is on the computer, it was never faxed to Matrix.  Or if it was faxed, it’s receipt was never actioned.  Irritating to say the least.

I then get a phone call from my nurse.  “The trials have a ten week lead in time that cannot be skipped.  The clock will effectively start when I fax this form”.  Granted, the statistical accuracy of what these trials report is going to be essential and that will include a range of pre-tests and biopsy results.  But I should have been in the system at the start of October and I’m not.

This creates a choice.  Ten weeks with no treatment, running the risk of the cancer spreading still further and maybe even killing me.  Or exhaust chemotherapy but start the clock on Matrix access now?  Hobson’s choice.  Chemotherapy it is.  But had that fax been actioned properly I’d now be undergoing tests to get me on the Matrix medical trials.

I feel let down.  The lack of follow up on my behalf has forced me to go down a treatment route I’m uncomfortable with.  And that my kids are a little uncomfortable with too having seen the impact chemotherapy had on a close family friend five years ago.

Thats not to say that clinical trials are a land of milk and honey that guarantee me years of pain free life and unlimited access to a series of Oldham Athletic promotions in coming seasons.

I might not be accepted after various medical tests.  Although I’ve had two treatable genetic mutations, so it’s not unreasonable to think they might be able to treat a third.  I might be given a placebo.  Side effects maybe horrendous.  Any drug combination might fail quickly.  Or, the long shot, I might benefit from a new treatment for a period of time and be a part of some wonderful cancer breakthrough.

Perhaps the chemotherapy attack on my cancer cells followed up with whatever the medical trials throw into me will work better.  But at a time when I’ve taken a psychological kick, I feel particularly let down by a system over something that is meant to provide hope.

And I spent last year riding that bubble of hope.

A Strange Few Hours

Today’s visit to Oncobabe was to get results from the CT scan I’d had a couple of weeks earlier.  My previous CT scan results at the end of September had seen off miracle drug afatinib, nine months in to what was meant to be a thirty two month stint.

And, this latest CT scan has confirmed that my cancer has spread across my pelvis, sacrem and even into my second rib above the right lung.

In other words, this vicious disease has now seen off my last realistic hope of a longer term survival.  The osimertinib is pretty much useless fighting my rather aggressive cancer.

Oncobabe waxed lyrical about the next stage of treatment.  She almost made it sound like getting a promotion at work.  But there is a stark reality to consider.  The next treatment is chemotherapy.  Three months of weekly sessions.  Two and a half hours of drugs flowing in through my hand and chest.  And a 49% chance of being wiped out after each session.

In good news, apparently any hair loss from this drug combination will be minimal.

I had hoped it would be clinical trials time when osimertinib let me down.  But apparently they’re not available until I’ve completed chemotherapy.  Which has convinced me that my thoughts of skipping chemo and dying a bit quicker isn’t such a good idea after all.

I was referred for clinical trial consideration back in October.  No official acknowledgment.  Today Oncobabe provided a phone number and a doctor’s name to follow up.  My sister’s onto it.  DIY lifesaving clearly preferred by Oncobabe.  “Your death just got much closer so chase up your own clinical trials” weren’t quite the words used.  But they might as well have been.

So what have I got to look forward to?  A birthday lunch in ten days.  A week in Anglesey with Rachel immediately after birthday dessert.  Oldham Athletic being Wembley finalists in the Checkatrade Trophy.  If they win another three or four games in the competition that is.  Stockport County might just sneak into the National League North play offs.  England might win the World Cup.

After that, realistically I’m struggling.  The April 2019 inheritance tax avoidance plan looks like a failure.  Seeing Chris graduate would be a miracle that now doesn’t look possible.  Seeing England regain The Ashes, no chance.  It’s highly likely this will be the shortest year of my life.

At least the last time I saw us play Australia at cricket we beat them.  A memory retained by my inability to get to the cricket down under this winter.  Small mercies.

Cashing In

One of the highlights of my “travel year” in 2017 was the opportunity to accrue points, airmiles, cash and other freebies as I travelled around the world.  Even if spend massively outweighed the value of the freebies, I got a kick out of bagging the loyalty points and still have the chance to use some of them.

A big frustration was not bagging c30,000 Avios from the Qatar flights to Australia that I had to cancel.  But given that I’d cashed in all the Avios to fund first class flights to New England it’s something of a shock to start 2018 with 145,000 Avios.  Enough to fund a return trip back to a West Coast USA destination in business class.  Now I just heed the health to make the trip!

Avios die with you.  Although there are stories of a solicitor letter to British Airways being enough to transfer them to a family member.  Chris might yet benefit from them.  Or Rachel might get 108 bottles of red wine.  Santiago, Easter Island and Las Vegas have earned well for me.  I’m not sure I’ll benefit though if I can’t fly long haul again.

Elsewhere I paid £450 (well, three quarters of that after refund) for an AMEX Platinum Chargecard.  This triggered 33,000 of those Avios, but more importantly provided numerous free breakfasts in Hilton hotels.  Oh, and free lounge access for me and a guest in the multitude of airports I travelled out of through the year when not travelling in business class.  Except Reykjavik, where I suspect the Priority Pass people chose not to offer the facility when told a passenger having a bag of crisps would bankrupt them .  It’s a card that definitely paid for itself while I had it.  Even if I never tested the free travel insurance. And I’ll never forget the upgrade to a suite at the Hilton in Park Lane, or the hooker outside.  A free night from a credit card loyalty scheme upgraded to a £2,000 a night suite with its own steam room.  Just wow!

I have just over 30,000 Hilton points left to use.  That’s three nights in Sheffield.  Or a night at a more interesting spa hotel in Chester.  My Holiday Inn account has 10,000 points.  A freebie in Rotherham or more likely a discount off a room anywhere.  And Hotels.com have two free nights of £100+ waiting for me.  I think they need to be used by August.

And then there’s good old Topcashback.  This has accrued £543 during the year and I’ve just withdrawn that from the account.  I usually wait for an incentive to convert to Avios or Amazon.  This time I’ve gone for cold hard cash.  I’d hate to leave it unclaimed and leave this mortal coil, so adding it to my bank balance now seems a sensible approach.  Airlines and hotels have provided most of that money.  Although £55 from match.com was the best value refund.

What is becoming clear as my body deteriorates is that the decision to allocate the year to travel after getting my diagnosis was absolutely the right one to make.  It’s been brilliant.  If you get similar devastating news that allows you a time window of reasonabily good health I strongly recommend doing what I did.  And still want to continue doing.  I’m lucky I had the means to fund it all.

Less Chemotherapy For the Terminally Ill

Today’s Times reports a hospital in Oxford is considering reducing chemotherapy sessions for the terminally ill, citing a shortage of specialist nursing staff.

This struck me rather hard because, unless a clinical trial salvages my life, once the osimertinib fails me chemotherapy is my last life extending treatment available.

But while it raises an emotive question for me, I was already in a place where I am considering refusing chemotherapy as and when it’s offered.  There’s a 49% chance of significant side effects in stage four lung cancer treatment, so the quality of any extended life might not be particularly good.  And let’s face it, I’m a goner anyway sooner or later.

Indeed, I’ve said previously that my main aim in accepting good old chemo is to keep me alive past April 2019.  That way a fairly unpleasant tax on my pension changes can be avoided and my untimely demise can at least give the kids a decent leg up in life – something that has been my main priority since diagnosis.

Would I be happy to be on the receiving end of less chemo?  Not if it meant dying before April 2019.  But ignoring those financial plans, and accepting that my industry, banking, is in a big way to blame for increased national debt and the ongoing deficit, it’s fairly logical for hospital management to look at a dead man walking and prioritise treatment for those who have a chance of a lasting remission ahead of me.

And let’s face it, the costs of the more effective treatments that have kept me alive this long are eye watering.  And while I’m still capable of a fairly decent quality of life I hope to carry on being a drain on the NHS for as long as possible.

I haven’t made any decisions on chemotherapy for me yet.  I’m not in Oxford, so the Times headline might not be relevant anyway.  That April 2019 IHT deadline might well play a big part in my decision making.  As might a simple assessment of the form of Oldham Athletic.  If they’re playing well and I can get to games my veins might be open to as much chemo as possible!

For now, osimertinib is my real hope in deferring those questions.

I’m Cured!

Having spent much of my working life in a bank branch, paying in cash or cheques has always been easy.  Indeed, as manager, even easier.  A quick word with a cashier and mysteriously the thing would be in my account within seconds.

I recently got two refund cheques from Virgin Trains after their services were disrupted on our epic trip to Southend.  First thought was to drive them down to the Halifax in Halifax town centre on Friday.  New roadworks were causing chaos.  I turned around.

Sowerby Bridge branch on Saturday morning then.  Alas, the double whammy of amitryptolene and tramadol overnight made me late for picking up Chris.  Opportunity missed.  My first visit to the Sowerby Bridge branch aborted by drugs.

Breakfast with Chris at a Wetherspoons in Shaw.  They used to have an agency just down the road I could have wandered into.  They all closed in 2009.  Indeed, 3,500 of them closed during my working life.  Only 600 branches left now.  And probably not for long.

Today I braved icy payments and negotiated those roadworks to finally deposit these pieces of paper worth money.  When I started work in 1986 I recall the ATM being clever enough to take deposits as well as dispense cash.

These days it seems progress means you have to queue at one machine to pay in and then queue at another machine to withdraw.  Unless you’ve already queued at the counter and been herded over to the machines by friendly staff trying to speed up their own redundancy cheque.  Then you can complete three in branch queuing experiences.

Nope, still not missing work!

Ouch! That Hurts!