Seeing the World

Saturday’s away game at Doncaster has given me a couple of really tough days.  To the point where nearly complete rest yesterday seemed to be the only solution.

Hips and lower back sore and weak after the drive and short walk that it entailed.  Compared to last Monday in Anglesey, Monday this week has been uncomfortable.

Short walks around the house have been awkward, as was putting a sock on my dodgy right leg.

At least this week is my hospital week.  Blood tests today.  Zometa bone strengthening Thursday.  Followed by my Christmas reunion with Oncobabe.  Where she’ll hopefully tell me the results of my leg X-ray from three weeks ago.  Oh, and back to the hospital on Friday to collect my drugs.  Then back to the hospital on Thursday after Christmas to have a CT scan.  Jingle bleedin’ bells!

It all seems to be quite demanding.  Driving the thirty minutes each way.  Long walks with stick down hospital corridors that seem never ending these days.  And no post blood-test hot tub or physio to help me recover!  At least I can use the hospital ATM which is now primary location to access cash.

I love a good football away day.  But the train trip to Plymouth this Saturday has the potential to wreck me.

No Michael, I’m 49 and You’ve Naffed Me Off

Doncaster away.  Not necessarily the most glamorous match of the football season, but a breakthrough for me in keeping the cost of football down.

My friend John bought tickets for the match.  We met over a decade ago as our respective kids enjoyed kicking a bottle around at the front of the stand during a half time interval.  My initial shyness at meeting new people quickly removed by an enjoyable conversation recalling the previous week’s 1-0 FA Cup win at Everton.

Lads and Dads now have season tickets together and we tend to travel to away games together when his work shifts allow.

John also picks up match tickets for away games for us, handy with me and Chris living outside the town.

Today’s 1-1 draw is the first time I’ve entered a football ground as a disabled supporter using a disabled ticket.  It seems my access to full Personal Independence Payments qualifies me to a free carer at football matches.  So john bought my full price ticket and picked up a free one for himself, suggesting we share the price of the two tickets.

He was also good at faking on the role of carer.  Walking in front of me.  Standing in the road as I struggled to get out of my car at any pace.  Ensuring walking speeds between car and stadium were adapted for my slowness.

The 89th minute equaliser was a thoroughly enjoyable moment.  And the good news is that the same free ticket arrangement is in place for next Saturday’s visit to Plymouth.  Good news given the price of the train tickets.  And we’re not even travelling first class.

Every New Pain Makes Me Think the Worst

It’s an inevitability of the condition.  Last night I felt a twisting feeling in my hip.  Instant thought “that’s a tumour pain”.  By the time I’d woken to admire yet another England batting collapse, it had gone away.

I sneezed violently this morning.  A sharp pain in my shoulder.  It must be the cancer I thought, as the pain didn’t dissipate quickly.  A few hours later it’s gone.

I’ve had a few nights pain free from where I could previously feel my shrunken pelvic tumour.  Last night I was sure it was back.  This morning I knew it most definitely wasn’t.

The illness, the diagnosis, the likelihood of a short lifespan for osimertinib being a success and the confusing realities of age / fitness related aches and strains play tricks with the mind.

My fitness is lacking because I don’t exercise as walking is tough.  So I end up with pains when i do something to exhert myself a little.  I’m sat here anticipating the failure of this drug, when the reality is that it seems to be working well.  For now.

I don’t want the drug to fail, even though it inevitably will one day, probably next year.  I don’t want to go through chemotherapy knowing it’ll add about four months to my life, but I don’t want to be in a position where I know I’ve given up.  But there is a reality that the day will come.

My eldest is moving in with his other half next month.  My middlest seems very happy in her married life.  And Chris seems happy in his studies.

And I really want to be around as long as possible to see them progress successfully through life.  To spend time with Rachel who is a fantastic companion.  To carry on watching Oldham Athletic be quite good for the first time in a decade.

Still hoping.  Even if it is a long shot.

An Increase in Childhood Flashbacks

Whether it’s been directly caused by the terminal diagnosis or just a side effect of not working and having a lot of time to myself, I have found myself having a handful of flashbacks to my childhood, pre-secondary school.

Minor events in the great scheme of things, seemingly returning to my consciousness  in glorious clarity.

I’m a goalkeeper in a cup final.  We go a goal down to an absolute stunner.  The only match my Dad attended and he’s stood right behind the net telling me what a great shot it was.  Inexplicably, I have not recollection of the goals that followed in a 1-3 defeat.  But we did equalise!

I’m in the sea at Saunton Sands in Devon, location for the majority of childhood holidays.  With an inflatable dinghy.  The wind gets hold of the dinghy and blows it out to sea.  I quickly give up the chase – a good survival instinct.  A wind surfer rescues the boat and returns it to me.

Crying at school assembly the morning after my Grandad died.  Despite hardly knowing him.

Scoring my first goal in playground football.  I think it’s fair to say I wasn’t very good outfield but this one felt good.  Even after one of my mates on the other side was less than impressed!

Showing my Mum a uniquely complex way to do long subtraction.  And her being rather impressed.

Staring at the Old Man of Coniston from the opposite side of the lake.  Hearing jokes about the Old Man and my Dad.

Back in goal for the lads v Dads match at junior school.  Ducking under a thirty yard screamer in certainty that my head would be removed if I stayed put.  I can’t remember the result of the game, or any other action.

Things that were pretty much forgotten resurfacing with great regularity.  Great clarity.  On the whole, it’s quite nice.

How Long Will “Good” Last?

Last time I got about a week when I changed medication.  The ability to swing my legs out of bed without going through a minute of two if tortuous agony.  The ability to stand up reasonably quickly returned.  And the ability to walk freely came back for a week.

It was great.  Then it stopped.  And I don’t really know why.

On Saturday at the football I was a timid, nervous wreck taking on the ice and crowds.  By Sunday morning I realised that much of what I believe to be tumour pains through the nights just weren’t happening.  Granted, the occasional aches and strains, but minimal in the great scheme of things.

I was able to move my legs out of bed without fuss.  And then stand up without noteable strain.  Although I had to put my iPad down to achieve this.

I walked the short walk to the bathroom.  Still a bit awkward, but even that felt easier.  Pottering around my sister’s lodge I was fairly confortable.  Not needing to sit down every minute.  Cooked breakfast sorted with ease.

Then the big test.  Getting in the hot tub.  It has crossed my mind that being in this desserted location alone  might be interesting if anything goes wrong.  And I don’t take my phone to the hot tub, which is probably my highest risk manoeuvre.

Unclipping the cover requires bending down.  I still found this quite tough this week.    Three clips at ground level.  It’s even harder reclipping them at night!  Then hauling up the lid.  I’d utilised Rachel for these tasks on our last visit.  She’s bendier than me. But with her working three hours drive away my self sufficiency kicked in.  Lifting the covers has been ok.

Next, getting into the hot tub.  This has always been a challenge for me since my first visit here back in May.  The smallest step from decking to hot tub is quite steep.  Previous visits have seen me with different kinds of mobility issues.  And I’ve found different, if cumbersome, ways of getting in and out.  I suspect they’d be amusing to watch for anybody who didn’t know the reasons.

This time, either through more confidence or a more free moving body, the clamber in and out has been much easier.  Given my lack of confidence just a few days earlier, I don’t think it’s that.

Maybe the osimertinib is doing more good than I thought.  I had feared its initial progress had been short lived.  But ten weeks or so into use and it seems to have kicked on.

Hopefully I’ll get more than a week of benefit this time.

When Your Musical Hero Collapses On Stage