Just Keep Swimming

“Just keep moving forwards, like a shark.”

Ferg used to say this to me in the very early days of his diagnosis, when we were both still in shock, grieving and bereft for the future we’d planned together. It was a useful mantra to get me through to the next hour. Sharks, apparently, can’t swim backwards.

It must have gone into my subconscious at some level because, since then, I’ve developed a passionate love for cold-water swimming. It started with a quick dip in the sea in Cornwall, followed by a few tentative trips to Ilkley Lido right at the end of the season. I was gutted when the Lido closed in September, but luckily, Leeds Docks opened up weeks later so I swam throughout that first winter and became completely hooked.

There’s something magical about the setting of Ilkey Lido, with the rugged green backdrop of Ilkley Moor sandwiched between stripes of brilliant blue. (Yes, the sky in Ilkley is free from clouds from time to time, but you still wouldn’t go in baht’at). But it’s so much more than a swimming pool, it’s a community of like-minded folks who just happen to enjoy plunging into cold water first thing in the morning. For the uninitiated, I’m sure it’s very difficult to understand. However, this community has been pivotal in keeping my mental health intact through some very challenging circumstances over the past few years. The unique combination of the peace and tranquility of the setting, the invigoration of doing something physically challenging, and the warmth and connection with the regular swimmers has provided protective and healing qualities to my overloaded central nervous system in a way that nothing else does.

It’s as a result of these connections that I find myself just days away from taking one one of the biggest challenges of my life. In less than 3 days, my swimming partner-in-crime Liz and I are taking part in the Swim the Arctic Circle Challenge. It’s a 3000m open water swim across the Arctic Circle through the Torne River, between Sweden and Finland. We set off just after midnight (which is exactly when the next England match starts, so think of us!) and we’ll be crossing an international border, the Arctic Circle and a time zone, meaning that if we finish in an hour, we’ll arrive the day before we set off. I’m taking my Dr Who Scarf with me to celebrate becoming a time traveller.

What’s perhaps even more remarkable is that neither Liz nor I could put our faces in the water a couple of years ago, never mind swim front craw! However, after taking part in our first open-water event in Ullswater, we got the bug for bigger and bigger challenges, and committed to weekly swimming lessons over the winter so that we’d have a chance of doing the distance needed for the Swim the Arctic Circle event. We’ve emerged this season as head-down front-crawl swimmers who hardly recognise ourselves!

I’m humbled by the support I’ve had for this challenge. Liz has put her heart and sole into fundraising for the Brain Tumour Charity we’ve both been reduced to tears (literally) by the generosity of the donations, particularly from our off-shoot motley crew of swimmers, The Otters, who brave the rapids of the River Wharfe in Otley every winter when the lido is closed. We’ve surpassed our original target of £2,000 and might even be on track to double it to £4,000. A huge and heartfelt thank you goes out to each and every one of you who have sponsored us. It really does mean a lot to me personally as I live in hope that a cure can be found in Ferg’s lifetime.

You can read more about our story and donate at: https://www.justgiving.com/page/arctic-swim-sisters

We’re planning to use this blog to provide updates over the next few days as we embark on this slightly eccentric experience of a lifetime, so stay tuned if you want to hear more! And in the meantime, my head DJ has decided to play Dory’s, “Just keep swimming,” on repeat, so I’ll leave you with that ear-worm!

Just Keep Swimming

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.