Seeing the World

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

Since I came to terms with the concept of having terminal cancer my main distraction from facing into reality has been booking trips.  And making trips.

My only overseas journey left is Australia.  And that’s at severe risk.  And that risk is stopping me booking other trips involving flights.

Granted, I’ve been able to do a couple of pyjama days where tumour pain was extreme.  Getting to Anglesey was a good escape, even if I did face into my realities a bit while there.  And normal Saturday’s with Chris being restored as I return from travels is good news.

Football dominates and has led to a first class booking for next Saturday.  My disabled railcard kindly knocking a third off the first class fare from Manchester to Bletchley.  First class, because I can and because it only adds £8 each to each leg of the trip.

Bletchley being somewhere close to Stadium MK, hone of the team that shouldn’t really exist, MK Dons.  Hopefully our record of been twice, lost twice will be improved.

I’m also trying to keep myself social.  Lunch dates with numerous former friends and colleagues. I’ll get over to see my Dad, possibly this week.  And I need to organise a trip to Wiltshire to feed some tigers.

Whatever my flying limitations, it does seem I can create enough things to do without straining myself too much and deflecting my thoughts away from excessive focus on silly little things like not being alive.

A morphine tablet seems to have minimised last night’s thigh pain too.  I’ll try without tonight to see if there’s any improvement.

The Thigh at Night

I am awake in the early hours for the second night running.  Because my thigh hurts.  Tonight is a little worse than it was last night.

Paracetamol and ibuprofen have made no difference.  Sleep would be appreciated but this discomfort is making that difficult.  It doesn’t feel the same as my last tumour, recently zapped by osimertinib.  But it’s fairly close to the area that tumour made home.

Which raises the question.  What is causing my pain?

Fear would say new tumours.  The fact the most recent incumbent stopped hurting a week ago suggests to my untrained mind that it isn’t to blame.  Unlikely to be happening.  But the fact it’s pain that’s most extreme at night mirrors the cancer pains of old.

Layman biology thinks I’ll have gaps where the tumour was, combined with tissue damage to bones, muscle and nerves.  I never studied biology to a qualification though.  So what would I know?  Would that hurt?

Targeted google searches throw up a theory that the tumour itself, having been successfully zapped, is now decaying.  That decay is being targeted by my body slowly cleaning itself and that is what’s causing my discomfort.

I might throw a couple of my remaining tramadol down my throat.  Perhaps washed down with a tea spoon of liquid morphine for a quick hit pain relief.

Theres nothing agonising going on. But I really want to sleep.  A few good nights have suddenly stalled.

At least I still have my movements back.

The Love For a Dutchman Called Queensy

It has bee the first normal Saturday in ages.  Normal being drive, Chris, Wetherspoons breakfast, football, Toby Carvery, home.

The breakfast had an irritation.  Refillable coffee was now behind the bar so I had to ask bar staff for the caffeine top up.  Negative points for Wetherspoons.

The evening saw Toby’s exciting new service.  Settle your bill on your phone.  One of my irritations with the place is the hours I’ve sat there waiting for a bill.  Now I can pay and go.  Irritatingly, despite being part of the Toby app the system doesn’t award me an online loyalty sticker.

The day’s excitement sat between these two events.

On a day when Liverpool and Manchester United bored the world to death, another Lancashire derby was taking place.  Oldham Athletic v Blackburn Rovers.

Decades ago this was a grudge match.  Numerous late middle aged men snarling their dislike of the opposition in memory of days gone.

While I was busy in Souh West USA strange things had been happening in Oldham.  Changes in manager.  Half the team were new to me.  They also managed to win three games in a row.  Unheard of.

I was hoping for a shed full of goals.  They didn’t come.  89 minutes of nice football from the home side, vicious fouling from Blackburn.  And then it happened.

A challenge won in midfield.  Oldham player gets beyond the last defender.  Usual script is to shoot lamely wide or get tackled too easily by an opposing defender.  But this lad shaped to shoot and actually looked like he believed he’d score.

The ball rolled slowly past the keeper.  It hit the net and the home fans roared in a way I’ve not heard at Boundary Park since an FA Cup equaliser against Everton nearly five years back.

The scorer, once on the books of Ajax, Queensy Menig.  Today’s recipient of man love in Oldham as Latics held on to win for the fourth time in a row.

And, for a time, I could forget about cancer.  Australia.  Pain.

The Things You Take For Granted