The Mortgage

I know I’m her mum, so I may be a little bit biased, but I’ve recently rediscovered some poems that Jemima wrote when she was about 10 years old. Personally, for her age, I think this is masterpiece.

What do you think?

The Mortgage

By Jemima Hadley (Age 10)

In my house,

On Penny Way,

I’ve paid the mortgage,

most, anyway.

But I don’t own the bathroom,

so I can’t go to the loo,

And I don’t own the hallway,

so I’m trapped in my room.

And I don’t own the kitchen,

so I can’t make any food.

So it isn’t really my house,

it’s someone else’s, too.

A Good Mum

I’ve always tried to be a good mum.

Having had 2 miscarriages before becoming pregnant with triplets, it was terrifying to be told that my pregnancy was ‘high risk’.

“Don’t go out and buy a triple buggy!” they said at our first scan (in a jovial tone), “Most people don’t take three babies home.”

While others exclaimed at how difficult my life would be, I was in a state of constant gratitude for the three tiny lives I was carrying, imagining all the fun we’d have as a family, the holidays, the days out, the games, the laughter and the stories we’d tell.

It wouldn’t have been possible to approach motherhood with this optimistic outlook if I didn’t have a brilliant role model to learn from. When I look back on my childhood, my mum is central to all my core memories, the ones that keep me grounded and safe. Sitting on her knee whenever I was upset, being hugged until it was all alright again. Going on special trips into town on the bus. Sitting at the counter and ‘helping’ to cook tea (i.e. getting in the way and eating all the best bits). Getting lunch in a café together – Cornish pastie with gravy in a greasy spoon was a top treat!

That’s why it was an absolute privilege to celebrate my mum’s 85th birthday this weekend. I’m so lucky to have a mum who still goes line-dancing three times a week and has a more active social life than I do!

Mum, you’re an absolute legend. Love you xxx

Stayin’ Alive

It’s been a while.

Five years, in fact.

It’s been longer than any of us dared hope for. The luck of the Hadleys, as Ferg would say. Ever the optimist.

Five years is the life expectancy of someone newly diagnosed with an astrocytoma glioma. The five-year clock takes us to June 2022, meaning we are halfway through our fourth year of borrowed time. I’m not sure why I describe it as, ‘ours’. It’s Ferg’s diagnosis, not mine. Perhaps we carry some of this together, although I can only imagine what it would be like to swap places. If I’m honest, it terrifies me. I don’t know how he exists from day to day without being in a state of perpetual panic.

When I last wrote, we were in full Covid lockdown and the girls were just 15 years old, coming up to GCSE’s. It feels impossible to condense the last five years into one blog post but I offer a few edited highlights to bring us up to date.

We survived Covid relatively unscathed, emerging from lockdown with 16-year-olds who have a staggering 30 x Grade A* GCSEs between them. Smart cookies. Our original post-exam plans to travel to Uganda to work on a dog vaccination programme had to be shelved due to the ongoing worldwide crisis, so we completed the Coast-to-Coast Walk together as a family instead. Ferg was utterly exhausted every single day and needed significant support to navigate some of the terrain, but we did it.

The A level years were memorable, seeing the girls growing up and developing their own styles, experimenting with hair, clothing and make-up, while continuing to work towards their goals. They had all set their minds on becoming vets, choosing science and maths over humanities and working hard to not only get the grades, but to complete significant periods of work experience during their holidays. Evie chose to go to a different 6th form, a brave move driven by the desire to be seen as an individual, while Scarlett and Jemima stayed on at Horsforth High.

It wasn’t all plain sailing. Is it ever, with teenagers? Scarlett became very seriously ill, culminating in her spending several months in hospital and having to repeat the upper 6th due to missing her A Levels, but that’s her story to tell, not mine. Jemima and Evie had a tough time while Scarlett was ill, with Fergus and I so worried and distracted during their A Levels. It was an incredibly difficult period for us as a family. I’m forever grateful that I didn’t have to navigate it as a single parent.

There’s been all sorts of adventures since then, with the girls travelling across Europe, firstly just Evie and Jemima, with Scarlett joining after finishing her A Levels. They all got places at university to study veterinary science, which Jemima and Scarlett took up (Bristol and Liverpool respectively). Evie took a second gap year to study musical theatre locally in Leeds, before heading off to York last September to read Philosophy and Politics. We are incredibly proud of everything they have achieved and feel privileged to be able to support them with their studies.

As it turns out, supporting children through the university years is more than driving up and down the country with carloads of possessions and providing emotional support; these days it also requires some serious financial commitments. I’m incredibly grateful to Fergus for taking the bold decision to apply for a job at Leeds Trinity University as a web developer and even more grateful that he secured a job offer! He’s 2 years in now, and I honestly don’t know what we’d have done without that second income coming in. They’ve been a great employer; one of his ‘reasonable adjustments’ is that he can have a daytime nap, something that I’d advocate for anyone over 40, not just those with brain injuries. However, it hasn’t caught on at my workplace, at least not yet.

Embracing our status as ‘empty nesters’ (which, by the way, we are very much not – the university holidays seem to span at least half of the year) we decided to take our long-overdue honeymoon. We got married when the girls were three years old and holidayed in Center Parcs, promising ourselves a luxury trip to New York later in life. Well, we certainly treated ourselves, I’ve never spent so much on a hotel room in all my life, but what an experience! We even upgraded to Economy Plus for the legroom – how the other half live! The only downside: Fergus had a seizure on the airplane on the way home. Not the best ending to the holiday, being greeted by an ambulance on the runway and whisked off to A&E in Manchester with no luggage.

Thankfully, his next scan was due fairly soon after that, and it was all stable. We’ve had another two since then, and it’s a whole six months between them these days, making the scanxiety much more manageable.

So, life goes on.

And I’m writing again.

Welcome back!

Living in Limbo

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.

Mischief Managed

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!

Stomach Spasms

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.

All I want for Christmas…is you!

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.

Quando, quando, quando,quando?

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.

At Home With the Hadleys

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.