Seeing the World

An exciting day in Milton Keynes. A town of seemingly dozens of out of town retail parks.

The Virgin first class lounge at Manchester Piccadilly was, er, basic.  The train journey good and we eventually worked out the bus route to the ground.

A wander around the stadium, purchase the tickets and into the game.

A magnificent first half saw Oldham storm into a 3-1 lead.  With ten minutes left it was 4-2.  Atmosphere among the impressive visiting support euphoric.  Final score 4-4.  Sickening!  Still, the unbeaten run continues.

Eventually I found myself at home around 10pm and, due to my improved mobility and lack of pain I made the big decision not to take painkillers.  I taped over my Bell’s palsy eye and sleep found me quickly.

When I awoke, in pain, it was 1.45am.  I took an anti inflammatory and lay there.  Some sort of hip pain on both sides?  I felt like I’d been stretched on a medieval rack. Presumably walking greater distances over the preceding couple of days had decided to hurt me.

I added paracetamol to the drugs taken.  Half an hour later, no improvement.  Quite the opposite.  My legs felt barely attached to the rest of me.  Straining.  Agonisingly.

Next drug:  oral morphine.  I downed a teaspoonful for a quick hit.  I spilled about the same on my pyjamas and carpet.  Quick change.  A little improvement but not enough.  Time.  No further improvement.  Fourth drug added – slow release morphine.

I lie on my back.  My front.  My side.  Still struggling.  Almost shouting out into the night as Storm Brian battered the window.  Discomfort on a high scale.  Still a feeling of being physically stretched.  Struggling.

Now, after 5am, I ponder a fifth medicine.  Amytriptoline.  I’ve not combined this with morphine before.  But the right hip pain is referring itself to the right ankle.  If I do this it really will be a zombie Sunday,

I got into bed feeling pretty good.  Three hours sleep before I discovered that feeling had gone.  Four hours of attempting and failing to sleep despite being drugged up.

It hurts at the moment.  Not enough to trouble the hospital, but enough to use just about all the drugs issued last time I did.

I hope this is going to be short lived and exercise related.  Not something more sinister.  It’s fair to say this isn’t very nice at all.

It’s Just Like Another Holiday

It’s not many people who would treat a trip to Milton Keynes as similar to another holiday.

But I’ve missed planning new trips as my flying ability remains in doubt and while there are no Avios points or free hotel nights with this one the modest planning and anticipation has been a welcome distraction from drug change, possible trip cancellation and some residual pain.

My two driving forces over the last year have been “I can do stuff despite this illness” and “there might be a more effective treatment before this disease gets me”.  And they remain the same.  Having stuff to look forward to, even if it’s Milton Keynes, has been extraordinarily important.

There are footballing reasons to look forward to today.  Oldham have been quite good at kicking the ball into the big netty thing at the end of the pitch in recent weeks.  An art rarely mastered in recent years.  That said, the eight occasions they’ve rocked up at Stadium MK have seen no wins.  And included defeats like 5-0, 6-2 and 7-0.

So booking our first class train tickets during the week gave me a genuine buzz.  Discovering it’s family fun day at MK and admission to the game is only £12 and Chris might be able to shave and convince them he’s worthy of £1 junior admission a bonus after paying a small fortune to get into Bradford City midweek.

It is still pretty much a normal Saturday.  Wetherspoons breakfast.  Hope they’ve sorted out their refillable coffee nonsense.  Head to Boundary Park to get even cheaper tickets for a game at Carlisle in two weeks.  Then wander into Manchester to get a relatively late train to Milton Keynes and onto Bletchley.

Footbal match.  Grab food afterwards and then home time.  No Toby Carvery today.  No airport lounge.  But the thought has just crossed my mind that the Virgin Rail Lounge at Manchester Piccadilly might open weekends.

It might not be as exotic as Easter Island, the Atacama Desert or as beautiful as The Bay of  Kotor.  It might not be as stunning as Grand Canyon or Death Valley.  There won’t be help yourself Bollinger

But, despite Storm Brian, I’m looking forward to the day.

Side Effect Heaven

The change of drug to fight my cancer has been generally positive so far.  The pelvic tumour has shrunk or gone.  It’s not a nuisance to me anymore.  It has been replaced by a series of other pains in the right thigh.  These have reduced from bloody painful to mildly irritable as the week has progressed.

Indeed, today I was able to walk unaided around Halifax town centre for a decent time.  Tired, yes.  But not in pain.  My assumption is whatever my new pain is will now fade further.

But there’s more good news.  The old afitinib tablets had two key side effects.  The first being the need to make a mad dash to the gents.  The second being made to relive my teenage years with a pleasant and ever changing dose of acne.

The acne also lived on my chest.  Pock marks everywhere!

The good news is that since switching drug my acne has virtually vanished and I’ve not suffered the trots once.

While I remain cautious about my now diminishing leg pain, there are things that are rather positive.

Loss of Appetite

I gained two stone in the months after my cancer diagnosis.  Not a disaster as I’d lost seven in the year and a half before.  But the hospital were happy.  Gaining weight is goodd in cancer land.  Usually.

I’ve not been weighed for a couple of months though.  And while hurtling around south west USA it became clear that my appetite was reducing.  I could handle a breakfast but would only half eat any other meal we ordered.

As the tumour grew my appetite faded.  Returning home and the trend has continued.  Although my first few days of osimertinib saw a return to higher levels of food intake that’s dropped back a little again in recent days.  A side effect of the drug being impaired appetite.

I have never struggled to eat in my life until now.  Recent weeks have seen half eaten steaks in restaurants, a remarkable effort to avoid being sick after biting into a fish and simply skipping lunch because I’m not hungry and still leaving a third of my tea.

I do tend to eat vegetables off my plate first, so hopefully I’m getting a reasonable nutritional benefit along the way.  But it’s a change for me.  I’m uncomfortable with it.  And after decades of wanting to lose a lot of weight I’m now frightened of wasting away.  Not there yet though.

Imagining the Effects of Zometa

Tuesday saw me plugged into a drip in the “chemo ward” to be infused with a drug called zometa.  Weak right leg?  Fine, we will pump it into your left hand!

I was threatened with the side effects of flu like symptoms on Wednesday.  While I did feel pretty lifeless all day I don’t recall sneezing,

Today I thought I’d read up on the drug.  A 3.2% life expectancy improvement for breast cancer patients.  Small sample, statistically irrelevant I think.

The drug supposedly assists bone regrowth.  I pondered why it wasn’t prescribed when my back had been ripped apart and scans were reporting damage to ribs, vertebrae, pelvis and sternum?

Anyway, a day of sluggishness passed and I’m more with it today.  I feel like I can feel things happening to my bones.  Predominantly upper back.  Is it real?  I’ve no idea.  Has my useless right leg improved?  No.  I still don’t know why my leg is misbehaving.  Friendly pain relief is minimising my chance to measure improvement or otherwise.

Apparenty there are are alternatives to zometa for bone strengthening that may be better.  They need four hours on a drip though.  I’m not sure my phone battery would outlast the boredom.  It’s not as if I’ve been offered a choice anyway.

The Insurer Stops Paying

My income for the last few months has comprised of three sources.  The taxpayer subsidises me to the tune of £83 a week.  Plus a BMW 3 series.  I qualify for this due to my illness being a bit on the nasty side.  Thank you tax payers.

I get £550 a month from an insurance I took out when I bought my first house.  If only I’d indexed the cover!  This pays out until I’m 62 and provides an annual increase of 5%.  Beats the public sector pay cap!  They ring me every three months to check I’m still alive.  If I’m not, they cease payment.

And finally I get £200 a month from an insurance I took out to mitigate the risk of job loss when it looked like the Credit Crunch would deliver redundancy.  Somehow that never happened before I was ill.  I should have cancelled the £9.95 a month direct debit but never got around to it.  Decent mistake to make as the policy also covers illness.

Alas, that £200 a month now ceases.  It’s twelfth and final payment has been made.  I can cancel my direct debit and scrap the policy.

As well as being a shame, let’s face it nobody likes losing income, it’s also a reminder of a series of anniversaries.  A year since my back surgery.  A year since my lip wobbled for the first time, spilling a drink out of my mouth – Bell’s palsy.  A year since my neurosurgeon said on Monday “Your CT scan is clear” then rang me on the Tuesday to say “there’s something on your lungs”.  A quick google revealing a 50% chance of death in six months if it’s cancer.  Scary, but not a problem as I don’t smoke.  A year since I met Rachel.   Just over a year since Louise and Emma married. There are always a silver linings.

The subsequent lung cancer diagnosis came a couple of weeks later.  The BUPA oncologist giving me instructions to move over to the NHS – my cover didn’t include secondary cancer – thanks Lloyds.  Being seen by a room full of people on my first NHS visit, two of whom were carefully documenting the fact I was being told I’m a dead man.  Can’t have too many witnesses to such news it seems.

It is fair to say I feel low right now.  Certainly not depressed.  But the drug change, ongoing limitations to mobility that I thought I’d shaken off and threat to Australia, combined with triggers of the anniversary of my diagnosis, not great.

Losing £200 a month isn’t the end of the world.  I can dip into my redundancy money to support day to day living.  That’s been used for holidays up to now.  Give me about four years and I might be struggling.  Maybe at that point I’ll be well enough to work or skint enough to get housing benefit.  The odds are on a darker option though.

Just When I Thought I Had a Pain Free Run at Life ..

I found myself strapped to a saline drip today, as planned, with a nice dose of zometa hone regrowth magic  pumping into me.

With no idea what to expect, I found myself herded to the chemo ward and, eventually, they plugged my hand into the drip.

There is little in the world that can make you feel less empowered than this.  While there was nothing particularly bad about the process, the whole situation made me feel small.  A little scared.  And far less keen to ask the list of questions I’d jotted down.

Perhaps for the first time I felt very, very isolated.  This disease isn’t in my hands.  My travel plans are being interfered with.  My leg hurts (albeit not as much as it did 48 hours earlier) and while the idea of doing a runner never crossed my mind I found a sympathy for those who reject cancer treatments and just wander away to manage their own demise.

Once the drip was over I did mange to throw some questions at an experienced nurse.

Should I have a flu jab?  Yes, it seems.  Although that needed her to call me back, as they’ve never had an osimertinib patient ask the question.

What is the upper leg pain I’m currently experiencing?  Probably bone regrowth.

I pushed her on Australia.  While she’s no oncologist she may have opened the door again on this trip.  She suggested stopping treatment of osimertinib while away removes the white blood cell problem.  The risk of significant cancer regrowth apparently limited in that timescale.  Suspending the drug preferable to the low white blood cell risk.

€566 allows me to trim my journey.  Sydney and Melbourne are city breaks not involving cricket.  I could chop both, or just the latter.  Less time without my drug.  If I don’t travel at all €942 is the fare penalty retained by the airline.

It’s another two weeks until I meet Oncobabe again.  Ultimately I’m going to have to pay attention to every word she utters to fully balance the risks.

The idea of suspending osimertinib use is quite a worry.  But maybe these medics have found a way.  Maybe.

What to do When I’m Not Booking Overseas Trips