Ferg’s scan is stable.

A celebrity cake is being assembled as we speak.

Hooray!

I really don’t like waiting for Ferg’s scan results.

There’s something strange about the scan having been done, but not reported, that makes the world seem to change texture. It’s hard to describe: I’m not constantly thinking about it, but I do occasionally find that I’m clenching my jaw while I’m washing the dishes; holding my breath in the shower; tensing my stomach while staring out of the window.

I’m glad that I’ve ditched drinking alcohol. It wasn’t helping.

And it’s not as though there’s nothing else going on. Lockdown, homeschooling, cancellation of GCSE’s, the virus out of control and post-Brexit chaos at work are great distractions. It’s also snowing here in Leeds, making the prospect of leaving the house even less likely.

We’ve decided to go into ‘full’ lockdown again for this final push. It would be devastating to lose a loved one to the virus in the final furlong with the vaccine in touching distance. So once again we’re holed up in the Hadley home, working, playing board games and, for me, spending as much time as I can get away with playing piano. It’s all good.

No date for results, but I’d guess 2 weeks from now minimum. I’ll keep you posted.

Update.

Ferg is fine.

Sleepy and a bit wobbly, but OK.

His seizure had completely abated by the time he woke up. I’ve spoken to the GP and to the Neuro-oncology Nurse Specialist who are both in agreement that’s it’s OK not to take him to hospital.

So we had a tuna sandwich and Ferg went back to bed, where he still is.

That was today!

Day off work today that I’ve been looking forward to so much. However, before I even put the 1st load of laundry in the machine, Ferg had a partial seizure. The usual: hand & arm spasms in the right hand side, but also a muscle in his stomach that had carried on twitching long after the rest has calmed down.

Ages ago , a lovely A&E doctor gave me 3 x 1mg lorazepam tablets to use to stop ongoing seizures at home to try to avoid trips to A&E. Given the C19 tier 3 situation, now seemed like a good time to use them. I’ve had to use all 3 to stop the seizure today.

He’s sleeping now but I can still see the muscle in his tummy moving. It’s disturbing his sleep. I’m watching over him in case it all starts up again.

Hoping to avoid the whole hospital drama. Wish me luck.

Great news today, the tumour is stable.

Next scan is in the first week of January.

That’ll make it a full year since we last had any bad news scans…the longest it’s ever been. Although, to be more accurate, the radiotherapy treatment only finished around Easter time so it’s not really been a full year of stability yet.

Apologies it’s so late that I’m updating the blog, I was hit by a tsunami of fatigue immediately after the call and went back to bed for a couple of hours.

It’s been an odd day, as it always is on results day. Relief combined with sadness that it’s never ‘over’ and never will be.

However, I am very grateful for the Christmas reprieve. It looks as though I’ll be lucky enough to get the only thing I really want on my Christmas list again this year, so here’s to a happy and fun festive season together as a family. It might be a little different with all that’s going on in the world, but as long as we can close the door on the big wide world and be together with a few board games and a good film, we’ll be happy.

Day minus 6 until Results Day.

Monday 19th October at 15:10, by telephone.

My mind takes these simple facts and builds fantasy futures, based on glimpses of hidden meanings.

Sometimes, ‘by telephone’ is translated into ‘the results are OK’. Otherwise they’d see us face to face. Other times it’s bad. They can’t risk Fergus coming in as he’s so ill and vulnerable.

Ten past three. That’s quite late. Towards the end of clinic. It could be the last appointment, one that they’ve shoe-horned in 10 mintues after they’d normally finish. It must be urgent, they need to get us in without any further delays to discuss treatment plans. Bad news has always been at the end of clinic, so that they can spend as long as they need with us.

Ten past three. That can’t be the last appointment time, surely they go on until 4pm? Or 5pm? It must be good news as they are clearly going straight onto another appointment. It’s just routine, nothing to report, keep on keeping on.

The date: 19th October. That’s 4 weeks after the scan. Last time we got the results after 3 weeks. It must be OK because if it was bad news they’d have got us in sooner.

The date: 19th October. That’s a long time after the scan, remember when I had to chase up the results after Xmas last year? They’d got stuck somewhere in the system and when we got the results Ferg’s tumour had grown in the 3 months since surgery to be bigger than it was to start with. Mr Corns was really angry with the low grade clinic and took us back into high grade. We’re back in low grade now. What if that’s happened again?

I wake up grinding my teeth; dreams of things that I can’t quite grasp slip away, unresolved.

Scan, results, scan, results, scan results.

It’s exhausting.

Sunday afternoon at home. Chicken in the oven (I thought I’d ordered a duck, however, much to the girls’ amusement, it’s a chicken). The girls are playing D&D wiht their Dad, and I’ve just finished a marathon piano practice (grade 6 exam just weeks away).

The last of the summer sun is shining through the French windows into our lovely family kitchen; it’s warm and homely, safe, comfortable. Normal.

I’d like to bottle this and store it away to bring out again one day. This feeling of the 5 of us together, at home, not doing anything special. Just having a normal Sunday.

I find myself pleading with the universe. If we can just have a few more years. At least until the girls leave home. I’ll be OK if we can just have a few more years. Please.

Scan on Tuesday.

It’s our 12th wedding anniversary today. We went out last night & had a really lovely time, laughing and talking for hours. We toasted to 12 more years, and later to our girls’ future happiness.

It’s also the end of an era today. The girls are returning to school tomorrow for the first time since early March. Our extended period of enforced enclosure is finally coming to an end. Luckily, the Hadley home is generally a happy home, so we’ve had a relatively easy lockdown compared to many people. A big house, a garden and enough IT for everyone to work simultaneously are things we are all extremely grateful for; they’ve kept us sane.

It’s not all sweet smelling roses though. There are some distinctly unsavoury smells on the horizon. In the flurry of school preparations, we’ve just worked out through a process of elimination that all 3 PE kits must be…still at school.

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.