Is it my imagination, or did we only just get a scan result?

And yet, the next scan is already in the diary.  Tuesday 22nd September, so results will probably be 5th or 12th October.

I think I’ve gone beyond scanxiety; it’s actually impossible to exisit in a state of permaent anxiety, eventually your body just won’t let you and you learn to just live with not knowing.  It’s actually quite liberating.  Planning beyond next week is no longer necessary; indeed, it’s generally pointless.  I quite like it.

We are in the privileged position of being between holidays this week.  We spent the last week in sunny Filey, which was a holiday we had to reschedule from Easter due to Ferg’s radiotherapy.  (As it happens, it turned out to be mid-lockdown so it would have had to be moved in any case).  We had a lot of fun and laughs in our rented caravan and managed to honour most of our holiday traditions, depsite the C-19 restrictions.  (These include cricket on the beach, swimming in the North sea, eating our bodyweight in cheese and biscuits, and the annual Adele sing-off in the caravan).

We’ve had a couple of days at home and (after much discussion and debate) have decided to take our planned trip to Spain, departing tomorrow.  It’s a risk, and we could rescheule, but when to?  I’ve checked my calendar for a date when C-19 restrictions are lifted and Fergus isn’t in treatment and, guess what?  I can’t work out when this might be.  Fergus is fit to travel, the flights are booked and the villa awaits us.

What more do you need?

Sorry this post is so long overdue.

News in brief – the results are OK – good, even.  As good as they get.

Fergus lives to fight another day.  It’s now only 2 months until the next scan date, but it’s still a repreive.

It was a strange appointment; firstly it was a phone call rather than face to face; secodly it was a doctor who we have never met; and thirdly it was on time, which took me by suprise so much that I nearly missed it.  Fergus brought his phone upstairs to our room, the call having already started while I was still engrosed in work (working from home for the forseeable future).

The mysterious doctor, whose name Fergus can’t remember, proceeded to ask endless questions about how Fergus is, going over the recent seizures and asking about medication.  I held onto Ferg’s arm, my head burrowed into his shoulder thinking, “This is it, this is it.  She has to ask all these questions before she tells us because we’ll be too upset to answer once she breaks the news.”

“OK, I’ll cut to the chase,” she finally announces (seriously?), “the scan shows that there has been a response.”  WTF does that mean?  What kind of response?  “There is no evidence of growth, and the areas of enhancment look smaller.”  Relief, flooding through the body.  I realise I’ve been clenching my jaw (probably for about a week).  No idea what she said next, other than we arranged to stay on a 3-monthly cycle due to the erratic nature of the tumour’s past performance.  Next scan will be late September, results in the 3rd week of October.

The areas of enhancement are, in very simple terms, the areas within the tumour where it’s gearing up to grow.  My (very limited) understanding is that the enhanced areas (as seen on an MRI scan) show where blood is crossing through the blood-brain barrier, enabling the tumour to grow rapidly and ‘take root’.  That’s probably something a neurologist would be offended by, it’s so oversimplified and possibly inaccurate.  However, what I can be sure of is that Mr Corsns does not like areas of enhancement, and therefore, neither do I.

So how does it feel?  For me, the relief is short-lived.  I’m fatigued by the constant cycle of scans, results and uncertainty.  I want to put it all in a box and not look at it, but it keeps spilling back out.

However, we have our summer before us, the kids are off school and, despite the world plotting otherwise, we are hoping to get away on holiday together.  So, for now, my planning horizon has lengthened to mid-Ocotber.  Here’s to enjoying what we’ve got while we’ve still go it.

It’s that time again.  Summer solstice just passed, daylight streaming through the curtains on both sides of sleep.  For us, this elongation of days is fuelled by the agonising passage of time between MRI scan and results.  And this time, it’s a much longer wait, a full 3 weeks.

I believe the reason that the wait is so long is that we are now under a more conventional consultant.  I don’t wish to speak out of turn or get anyone in trouble, but the maverick approach of Rob Corns was to give us the scan results as soon as he could, typically 3-4 days.  This meant that they came with the caveat of being ‘unreported’, meaning they had not yet gone through the multi-disciplinary team.  He never got it wrong, though.

Michael Flatley is perhaps more cautious, or rather simply follows the usual protocol.  Plus, there may be some C-19 related delays, who knows.  In any case, it will be a phone call on the 20^th July.  At least the remote contact measures will spare me the anxiety triggered every time I walk down that apricot corridor to the chaos of the oncology clinic waiting area.

Fergus has been doing well, albeit with a minimum of 12 hours out of every 24 spent fast asleep.  However, yesterday he had what he described as a ‘funny turn’ where he started to forget words and felt a seizure coming on.  He simply lay down and went to sleep.  He also had some mild postictal symptoms during the remainder of the day, so I think we are classing this as a small-scale seizure.  I’m glad I’m working from home at the moment, it’s good to know that he wouldn’t be alone in the house if he had a full seizure.

Day minus 16.  Keep on keeping on.  Moving forwards.  Like a shark.

Anyone who knows me well will be aware that I am ALWAYS hungry.  Day and night, morning and evening, I am known to munch my way through every hour of the day.  That’s how I earned my nickname of ‘the little mouse’, nibbling here and there and never being satisfied that I’ve had enough food.

That’s why it is with a heavy heart that I have agreed to take part in the following fundraising activity.

My amazing work colleagues have collaborated (virtually, of course) to put together a sponsored 1 day fast, to support and honour those who are observing Ramadan for the full month, which will be so challenging this year for Muslims worldwide who are in lockdown.

So from sunrise at 05:34 to sunset at 20:35 on Wednesday 29th April, I will be nil-by-mouth.  Wish me luck…and if you can, please CLICK HERE to sponsor me.

Proceeds will go to Fergus’s chosen charity, BTRS, which you can CLICK HERE to read more about.

And…we’re done.  41 appointments. 9 CT scans.  2 MRI scans. 476 miles of driving.  850* minutes of waiting.  300 minutes of treatment.  63mg of steroids.  1 episode of seizures and 1 resulting A&E admission.  It’s finally time to ring the bell!

That’s right: there’s a tradition at Jimmy’s that you make a bit of an occasion of your final treatment session. Before lockdown, when I was allowed to wait for Fergus inside the department, we’d often see families gathered together for a photo of the patient ringing an old-fashioned bell that’s installed in the waiting room; this marks the end of their treatment.  Everyone else gives a cheer as it rings.  (It’s very much like the ritual used at the Miller & Carter chain of restaurants to celebrate a great steak).

As I’ve been relegated to the car park for the last 4 weeks, I asked Fergus to take a selfie of him rining the bell today, to include on here.  However, due to the implementation of tighter infection control measures, the bell has been removed.  There will be no bell tolling today.

Oh well, perhpas it’s just not his time.

* estimate

Fergus:  I’ve just had a reminder on my phone that says, “Fill up pillbox.”  It must be an auto-correct becuase I have no idea at all what that means.

Me:  Doesn’t it mean that you need to fill up the pillbox that you bought with the pills you need to take for next week?

Fergus:  Oh yeah!  Yes, it does!  I was thinking that a pillbox is one of those concrete bunkers that they built in WWII.

Really?

Are you feeling as though you can’t quite believe what is happening to you?

As though your future plans hang in the balance?

Feeling gutted that you won’t be able to take that planned holiday this year?

Worried about the future of your family’s income during a time of not being able to work, through no fault of your own?

Struggling to balance work and home commitments?

Afraid of losing someone you love to a cruel and unforgiving disease?

Welcome to my world.

The parallels between a brain tumour diagnosis and living through this pandemic are stark.  It shocks us, knocks us off our feet, brings panic, fear and disappointment.

It’s not all bad though.  It also brings perspective, gratitude and a sense of unity.  In time, you too will find that you are now learning to take each day as it comes, to live in the moment, and to find new and unexpected joys in everyday tasks.  All you have is today, right now.  The past is gone, the future doesn’t exist.

Acts of kindness spring up around us.  I can’t count how many offers of help I have personally received.  Friends, family and neighbours check in regularly, as we check on others.  An army of volunteers have come forwards, locally and nationally.  Humanity shows its better side, at least some of the time.

Controlling the fear and anxiety of keeping Fergus away from the virus until his radiotherapy treatment is over (15^th April) is one of the hardest tests to date, but by taking things day by day, reflecting on things that I am grateful for and finding something to laugh at every day, I am able to keep moving forwards (like a shark, as Fergus would say).