Hi there - don’t forget that you can listen to this post if you prefer. I’ve recorded my own voiceover so if you would like you can just hit play and enjoy my dulcet tones aka wonky Watford accent!

I’ve always loved animals. Whether it was a goldfish called Sooty (he was white!) that I brought home in a plastic bag from a school fete. Or the hamster who did a Houdini by escaping his living quarters and turning up in the bath. Not just the bathroom, but the actual bath! Or another we nicknamed Heinz 57, due to her multiple personalities, who had a death wish when she leapt out of Mums hand and into the open cutlery draw. Amazingly she was unharmed, before anyone worries.

And then there was the collection of rabbits and guinea pigs that I dutifully cared for in their hutches in the garden. I was always anxious to make sure they were locked up safe and protected from the neighborhood foxes who were permanently on the look out for an easy dinner.

I’m sure that Mum loved explaining to the (smaller) kids next door why one of our rabbits decided that, while out in their run on the lawn and in full view of our neighbors, he and his companion guinea pig were now friends with benefits! Going by the squeaking Patch - the unfortunate guinea pig - was definitely not on the same page when it came to taking their relationship to the next level.

Over the years my parents garden became a graveyard to the various pets that came and went. Each lovingly laid to rest in the vegetable patch. I dread to think what the new owners thought when they dug up that area of the garden. They must have found skeletons galore.

But every one of those creatures was a surrogate for the pet I really wanted. I yearned to have a dog. But Dad wasn’t having any of that. He’d grown up with a sassy little Scottie (Scottish Terrier) called Jock - and had the scars on his hand to prove it when he’d to break up a fight with a much larger dog. He knew that we couldn’t give a dog the best life - too many holidays abroad and too little time to give it the daily care it needed.

He must have been sick to death of my pleading. I did my best to get Mum on my side, but even she wouldn’t be swayed about us having a dog. In the end I got second best - I still was ecstatic - as when I was around 15 (about 1982) Dad gave in and we were allowed to have a cat.

I still remember going with Mum to the rescue place to pick her out. A beautiful little tortoiseshell kitten.

An old faded picture of her and I - not long after she came to live with us. We called her Xania - pronounced Hania - after the town Chania in Crete where we’d been on holiday.

The first evening we had her Dad and I went out - I had an ice skating lesson in London. A story for another time. But we came home to find Mum lying on the kitchen floor, swearing her head off, because the little 8 week old bugger (Mums description, not mine of course!) had decided to wedge herself behind the dishwasher and refused to budge. It took hours to coax her out.

Could you find a cuter kitten? Credit for this one goes to a washing machine repair man, or maybe he was a telephone engineer from BT, I don’t remember exactly. He happened to come to the house a few days after she arrived. As a keen amateur photographer he couldn’t get back to his van fast enough to grab his camera and take some pictures of Xania. This one will always be treasured in my Memory Box.

She was cuddly as a kitten and would jump up to sleep on your lap in the evening. But as she grew older her desire for independence increased. She loved us in her own way, but was content to sit in ‘loaf’ position by the door to whatever room you were in. She wanted to know where you were, but didn’t need more.

Her nights were spent outside stalking the woods that led directly off Mum and Dads garden. She quickly became an accomplished hunter and loved nothing better than bringing home decapitated mice to leave on the mat outside the glass kitchen door. Needless to say Mum was the one with the rubber gloves to deal with those little offerings.

She loved Mum the best and she’d request breakfast by licking Mums bare heels as she stood making coffee in the kitchen. When we came home after being away on holiday she’d disappear to the top of the garden and sit for hours, with her back to us, sulking at our audacity that we’d gone away and left her!

Sadly Xania died unexpectedly when she was around 12 I think. By then I’d moved out and was living a 30 minute drive from their house. So when Mum and Dad were away a neighbour would look after her. But one day I got a worried call from that same neighbour - Xania had disappeared and hadn’t been seen for a couple of days. We went over and heartbreakingly found her dead, curled up on the Flymo (a type of lawnmower) in an out-building that she had access to use when she wished. I couldn’t see through my tears as we dug the grave to bury her in the veg. patch that evening.

It took me apart that she died alone. After all these years it still makes me cry as I write this. I stayed home from ‘work’, aka studying for my PhD, for two days. Luckily my supervisor was allergic to emotional women and didn’t care as long as he didn’t have to deal with my tears. I stayed in bed and literally cried me a river.

I missed having a pet so it didn’t take long before I wanted another animal around the house. We attempted to have a dog, but realized within a couple of weeks that our lives, and our little house, were not dog friendly so she went back to whence she came. More tears. But I wasn’t giving up. It was time to ‘sell’ having a cat to another man in my life.

And after a little while along came Mabel, otherwise know as Mabs.

It was 1999. I was coming to the end of my PhD. And I’d been married for approaching seven years. This time I had to convince my then husband instead of Dad that we needed a cat. It took time. He finally gave in. He wasn’t at all enthusiastic - I was definitely the driving force - which could have proved funny, if it hadn’t been annoying, considering his reaction once we had a cat.

We went off to visit a volunteer at Cats Protection (as rescue charity for those not in the UK, or not into cats!) - somewhere in Watford or the surrounding area I think.

I remember walking into the garden and there was this big structure built of wood and chicken wire. At a glance it looked much more like a bird aviary than a home for cats. But inside there were five or six felines looking for new homes. No kittens this time.

We were let into the ‘building’ and as I stood there this little black cat climbed up on to a shelf that ran around the structure at about waist height. She didn’t hesitate. She walked straight up to me and climbed into my waiting arms. Snuggled in. And I could almost here her say - “I love you, please take me home now.” How could I refuse?

So that little six month old cat became our Mabel. Not a run of the mill name for a cat I know. Why Mabel? Because at the time I adored an American TV show called ‘Mad About You’ starring Paul Reiser and Helen Hunt. Mabel was their (new) baby of the human variety. My Mabel was my fur baby.

Mabel came to live with us on Sunday 10th January 1999. I’m not good with dates as you may have gathered, but that one is stuck in my mind. As I sat on the floor playing with our new housemate Mum called, to say that Granny G had died. I’d already been looking forward to introducing Gran to Mabel - she loved animals as much, if not more than, me.

It was also just over a week before my PhD viva, the final oral exam, before you are bestowed with the title ‘Doctor’ and start to confuse the general population with the fact that you can use the title ‘Doctor’ but you’re not of the medical variety and no, you can’t take a look at the strange spot on their butt.

This is the only picture that I have left of Mabs. The quality isn’t great as it’s a picture taken on my phone of the original, not so good, photograph. Here she’s sitting outside our home office, as I revised for said viva, patiently waiting for cuddles - she loved snuggling up on my chest and putting her head right under my chin.

As we’d find out, around anyone else but my husband and I, she was a nervous little soul. She hated any visitors to the house and as soon as the doorbell rang would rush to hide in the furthest corner under the guest bed, where nobody could reach her. There she’d stay for hours even after they’d left.

We didn’t have a cat flap in that house but after a few weeks we’d open the back door and offer her time outside in the garden. On every occasion we got a resounding “No thanks!” It took a good six months before she built up the courage to step out of that door. I’m sure that she was convinced that we’d let her out and then not let her back in again.

All that we knew of her early life was that she’d been born into a chaotic house with too many dogs, too many cats, and too many kids. She certainly carried the mental scars to prove it.

And it also resulted in her having a very confused identity. In her head she had no idea whether she was a human or a dog. A cat didn’t even come into the picture! Take her to the cattery for a stay while we went away and she’d spin around in my hands and grab my chest with her claws (I still have the scars to prove it) - “Don’t leave me with those creatures” she seemed to implore.

She played fetch like a dog. Her favorite game. Though we made a fatal mistake by buying her little plastic ‘cat’ balls with a bell inside. Why were we so stupid?! She’d hide them around the house so that she could retrieve them at a time of her choosing. Usually around 4am! You’d hear her come tinkling up the stairs, then plop onto our bed. Then she’d carefully drop the ball on you to get more tinkles as it rolled off. As far as she was concerned it was time to play.

I started working from home in 2002 which was bliss for her as it meant that I was at home all day, unless I was travelling to see a customer. It would get to about 5pm and she’d decide I’d done enough for the day. She’d saunter across my desk, park her bum in the middle of my keyboard, and sit - staring into my face - challenging me to try and type anything more!

She wasn’t a hunter like Xania and preferred to sleep at night in a nice comfy bed - preferably ours. Which as far as she was concerned was actually hers and she was kind enough to let us share it. She generally slept in the middle - my husband and I clutching the edges either side - while she stretched out luxuriously (and horizontally) across the bed. Is it any wonder that we ended up divorced?!

I adored Mabs - way, way, way past the point of reason. She was my fur baby. My buddy and confidante. My one true love.

But…

Even when we got her I knew that my marriage wasn’t going to last. If I’m honest I’d say that we probably never should have gotten married in the first place. I loved the wedding bit, but was never 100% convinced about the marriage part and the fact that it meant spending the rest of my life with this guy.

I wanted to leave. But I just couldn’t quite find the courage to step over the line. And Mabs made it all so much harder. I’d fallen hook, line, and sinker in love with this little soul, who’d climbed into my arms that first day that we met. And the trouble was that my (then) husband had done the exact same thing.

I couldn’t leave her. And I knew that my husband, who I now wanted very much to be my ex-husband, would fight me for ‘custody’.

So I stayed for more years than I even want to think about. I stuck it out. Hoping he might have an affair and decide to leave so that I could have some (guilt) leverage to force him into letting me keep her. Dreaming of a life without him. Sad, right?

But in the end something had to give. Things started to fall apart. I changed job because of pressure from him as he hated me working late into the evenings and travelling to medical conferences on the weekends. Little did he know that I added an extra night, here and there, just to get away from him.

I hated the new job and after only two days called my boss to ask for my old job back - and yes, this was Synarc (again) for those who read my previous post. I wanted to be closer to the action, part of a team, and asked to move to an office, ideally the one in Copenhagen. They said yes, with no hesitation.

It broke my heart that I had to leave Mabel, but it was time, and I couldn’t take her to live in another country, in a small apartment, and deal with her care when I was travelling more frequently.

It was July 2003. Mabel was almost exactly 5 years old. And within just three weeks I was gone from her little life for good. It still makes my heart hurt to think about it.

She stayed with my ex, who I know took good care of her, and I only saw her once more a couple of years later. As you can guess she treated me with the disdain you’d expect for leaving her as abruptly as I did.

She would have turned 27 this month so she must be long gone by now, but I’ve never stopped thinking of her and I hope she lived a long and happy life.

Do I regret that I stayed in that marriage for years past its sell by date? Many people would expect that I would, especially after getting so sick at the end of 2022 and coming within a hairs breadth of dying. All those wasted years. But not in my book. I don’t regret a minute. I had precious time with Mabel even if not with that particular guy.

When it comes down to it I don’t regret any of the decisions that I’ve made in my life as each one has resulted in me being exactly where I am today. In Copenhagen. Looking out of my window at a beautiful blue sky and a gorgeous garden. Married to a man that I love to the moon and back and who I’m certainly not planning to leave. And with another furry friend that I adore.

I like my ‘here and now’ very much…

A little thank you to who inspired this post by writing about her own cat, aka ‘little fucker’, back in May and who encouraged me to put pen to paper, or perhaps I should say fingers on the keyboard, to share this story.

I can’t leave this post without sharing a picture of my current furry squeeze. I know, any excuse! If you haven’t heard about her before this is Evie, a Papillon/Chihuahua mix, though the Chihuahua bit seems to gone astray. She’s a dinky 4.8kg and turns 4 years old on 13th August 2026. I loved my cats, but Evie is something extra, extra, extra special.

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book about my flesh-eating bacteria battle - Hold My Hand: A Journey Back to Life - for FREE here on Substack last year. If you’d like to read it then you can find every chapter by clicking HERE and you’ll go directly to the webpage dedicated to the book. Or you can just click on the link to the first chapter below.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

I don’t believe in a higher power. I don’t believe in fate. I don’t believe in a pre-defined destiny. But occasionally I feel that the universe has a plan and it’s not going to give up on something that is meant to be.

Back in the mid to late 1990’s I was working in the Osteoporosis Unit at Guy’s Hospital, right by London Bridge station (and these days beside The Shard). Initially I was studying for my PhD, researching a new way to image and identify fractures in the spines of osteoporosis patients. Osteoporosis is a condition that makes bones fragile and more susceptible to fractures. By spring 1999 - as a Prince fan I thought it was cool to have that date on the spine of my bound PhD thesis - I’d finally graduated and was incredibly proud to drop being a ‘Mrs’ and to become ‘Dr’ instead.

I stayed on to run the research section of the unit, working on clinical trials to test potential new drugs to treat the disease. I loved the science, wasn’t so enamored about seeing patients or taking blood, and definitely hated the long commute from Watford. I was also stuck between a rock and a hard place, in a political minefield, being employed by King’s College (the university) and fighting with collaborating with the NHS managers overseeing the running of the unit which also provided a bone density screening service for the community.

By the end of 2000 I’d had enough and I left to join what was then Glaxo Wellcome, as a contractor. It rapidly became GlaxoSmithKline, aka GSK, who were just daft enough to give me a permanent job. I was running something called Phase I studies - testing new drugs for the first or second time in humans. Fascinating, and sometimes nerve-wracking stuff. I made friends and assumed that I’d be there for a decade or more.

But a matter of months after I started there I got a call…

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I had no idea that the universe had in fact already failed to execute its plan once and wasn’t intending to fail again. So it was trying to push me in a different direction.

That call was from an imaging company, also focused on the clinical trials space, about going to work for them. It was a lucky break for me. I knew the CEO. At a previous company he’d been the financial sponsor of my PhD, but he’d relatively recently moved to this new company that had been spun out of a clutch of academic groups in Europe and the USA. It was called Synarc - 120 employees spread around six offices. That name has long since disappeared, erased by a number of sequential acquisitions, but some of those folks are still there doing their bit to help patients.

The CEO wanted me to join them. He thought I’d be good at sales. I’d done it before, right? Errrr, kinda?! I’m not sure that selling clothes at C&A for a few years counted? Was I really the type of person to be in sales? I wasn’t sure. My vision back then of a ‘sales’ person was a man with shiny black shoes and white toweling socks. Yes, maybe my thinking was stuck in the 80’s even though we’re talking 2001. I imagined a sleazy secondhand car salesman. Someone who was pushy, slimy, cheesy, dishonest, manipulative, disreputable, smarmy… Need I say more?

He came over to London from the US and a lunch meeting turned into an entire day together - talking, and talking, and talking some more. We walked across the city, all the way back to Guy’s Hospital, to visit mutual friends. There was dinner in a little Italian restaurant - I don’t remember where. And there was an incredibly irate (first) husband who couldn’t understand why I wasn’t home yet and why I was totally ignoring his texts and calls to my mobile!

They made me a formal offer. It was a good one. I almost said yes. But I was chicken. Freaked out at the thought of a SALES job. It wasn’t me. I couldn’t live up to their expectations. I wouldn’t be able to stand the pressure. I turned the job down.

And then a few days later Granny P (Mums mum) died. The first grandparent I’d lost that I could remember. My perspective changed. And boy, did I regret my decision.

I was forced to pull on my big girl pants and call the CEO. Tell him I’d made the wrong decision. Do that apology dance. And ask if they could please make that offer again? Pretty please?

I was given a penance to complete before they’d consider it. I was required to come here to the office in Copenhagen, located in a suburb called Herlev (just a mile or two from where I sit as I write this), and meet with their European General Manager for a second time.

We didn’t get on at my original interview with him. I’d been thrown and had taken offence at some of his (utterly inappropriate) questions. For example - “Do you plan to have kids?” “And if so, when?” He wanted to be able to plan ahead for any maternity leave cover! To rub salt in the wound I’d only recently admitted defeat after spending years enduring fertility treatment to try, and ultimately fail, to have kids of my own. The CEO wanted us to mend some fences.

I got on a plane and I remember sitting in the middle of the open office for lunch. There was a full kitchen and long tables for people to eat together. And there was this guy. Sitting on the other side of the table a little to my right.

I had no idea who he was, but he (and I think all of the office) knew who I was and why I was there. His English had an American twang, gained from watched lots and lots of American movies. He talked to me. Made me feel welcome. He seemed warm and kind, happy to chat while many of his colleagues stayed quiet.

This time when they offered the job I accepted. I started working from home in Watford and then from Oxford. Anyone else remember the days of ISDN lines, the supposedly groundbreaking alternative to analog dial-up, before broadband made it’s appearance?

I was pretty good at having IT issues. But I got support from the head of IT in the Copenhagen office. Until he didn’t have time anymore and dumped me handed me on to his minion, this person called Kim. Who turned out to be the guy who had been so kind to me at that lunch.

Kim would never give up when I (or anyone else) had a problem. But was always generous enough to give me credit when I (rarely) solved something myself. He never made me feel like an error 40 - the problem being 40cm behind the screen. Apologies to all the IT guys out there for giving away your secret code!

But he still takes great delight in telling the story about the time that I managed to collect 187 (yes, that really is 187!!!) viruses on my laptop and it ground, unsurprisingly, to a shuddering halt.

One day, some time in 2002 I’d guess, I’d come over to the office for a day or two, probably for a customer meeting. As always I had to go visit IT because of some kind of problem - nothing to do with the user of course! Kim was peering intently at his own screen. His forehead wrinkled in concentration. As it turns out he was trying to work out why I was already in his Outlook contacts?

It took a while for the penny to drop. One of the other students working with me at Guy’s had been doing a PhD testing the use of ultrasound to measure bone density and diagnose osteoporosis. She was using a prototype machine developed by a company in Denmark.

Multiple times we’d packed up her machine in it’s wooden crate to send it back for repairs or additional testing. I hadn’t realized, but it was Kim’s name that we were printing to put on that shipping crate. And to add to the fun she’d given the company my information as her backup contact and Kim had added me to his Outlook contacts - bringing them with him when he moved company to Synarc.

But it doesn’t end there. This particular machine was a royal pain in the butt a little erratic and unstable when it came to measuring bone density. The company that developed it started to question if there was something environmental affecting it. So rather than send it back for the 100th time they decided to send an engineer over from Denmark to look at it in the room where we were using it.

Have you guessed where this is going?

It would have been somewhere in the summer or autumn of 1998. I was busy writing up my PhD thesis. Spending some of my days at home to get a little peace and more words on the page. And that’s where the universe failed first time around - I was at home on THAT day when the engineer visited.

I remember coming in the next day to stories about this handsome ‘Viking’ engineer who had come to visit. The two other (female) PhD students couldn’t stop chattering about him!

But let me put this in perspective. We worked in a department primarily catering to patients who were old ladies and on a floor also occupied by a children’s ward. We were starved of good looking men in our age group. The highlight of our week would be when someone (usually a kid on the ward) set off the fire alarm so we got to watch a bunch of firemen rush past our offices in their uniforms!

Image caption: Kim in full movie star mode. Just ask him how many years he used this picture on his LinkedIn profile! We’re not sure of the exact date, but we think it was likely taken in late summer 2003 at a Synarc event.

As Kim and I talked, not only did we work out why I was in his Outlook contacts, but light also dawned that he was that handsome engineer that had come to visit the hospital to try and fix my friends ultrasound machine.

So after two attempts the universe finally succeeded and managed to engineer us meeting.

I’ve often thought back to the multitude of sliding doors moments in my life that resulted in that happening.

If I hadn’t decided to go to university at the ripe (not) old age of 24.

If I hadn’t happened to choose osteoporosis as the topic for my final Bachelors degree project.

If I hadn’t happened to see the advert for my PhD place in the New Scientist magazine that week.

If I hadn’t kept on walking forwards when I was tempted to turn back and go home, on the way to my PhD interview, unsure that I could survive on the small financial grant that I’d get if I was offered the place.

If my Gran hadn’t happened to die right at that time.

If I hadn’t met that particular CEO.

If I hadn’t regretted my decision, swallowed my pride to make that call, and hadn’t come to Copenhagen to make peace with the General Manager. (Though I’d still like to give him a piece of my mind when it come to those questions! I can’t believe I held my tongue. But I guess, good that I did.)

If I hadn’t finally been offered the Synarc job for a second time and accepted it.

If… If… If…

As I’ve said before - life is truly a game of chance.

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It would be a few years, with plenty more sliding doors moments that could have sent each of us in different directions, before we realized we had feelings for each other.

There would be a divorce for me, a different job that lasted for only 3 days - until I regretted that one too and returned to Synarc - and then an unexpected move to beautiful Copenhagen.

Later there would also be a separation, followed by a divorce for Kim too.

And then…

… my visa came through to move to San Francisco. I still thank my lucky stars that it felt too far away from my family in the UK, and the company was undeniably unstable, so I decided not to make the move.

But in the end the universe got its wish. We fell in love. Bought a house together … And swore that neither of us needed to get married again.

Image caption: a picture of a horrible old polaroid, but look at those smiles on what was a truly joyful day - of course we had to have the obligatory house-warming party just three days after we got the keys!

Well… you know there seems to be a bit of a theme in this post of me regretting things. In this case I didn’t so much regret that I’d said I didn’t want to get married again, but I had a burning desire to stand up in front of our friends and family and proclaim to the world just how much I loved this guy.

Thank goodness he felt the same.

A couple of years later, on 22nd March 2008 and the day before I turned 41 years old, we sealed the deal and got married in his home town here in Denmark. More on that another day.

It was almost exactly 10 years after the universe starting working on it’s mysterious plan to bring us together.

What sliding doors moments, or chance encounters, have changed your life?

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - for FREE here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and you’ll go directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

Please note - all the photos are my own. And apologies to those who are weird kind enough to enjoy my voiceovers as logistics mean that I can’t include one today - perhaps I can add it in a couple of weeks. Maybe.

And it’s over… We’re home from our big camper van trip for 2026. And our house seems vast in comparison to living in the van.

Facts & Figures

• We drove (mostly Kim, but some by me) 4,175 km i.e. 2,594 miles.

• We were away from home for 2 weeks, 6 days, 1 hour, and 16 minutes.

• We spent 13 of the 19 nights in the van - more nights than we did all of last year put together.

• We travelled through 6 countries - our home country of Denmark, plus Germany, Netherlands, Belgium, France, and UK.

• We stayed in a total of 12 different locations - in date order - Flensburg (Germany), Bremen (Germany), Gistel (Belgium), Wheathampstead (UK), St Ives (UK), Ely (UK), Bedale (UK), Durridge Bay (UK), Bamburgh Castle (UK), York (UK), Wheathampstead (UK) - again, Münster (Germany), and Gråsten (Denmark).

• The most we paid for a pitch, by far, was £68 in York and four places were free - including two that were the drives in front of the houses of friends and family.

• While we were away I walked 210,033 steps. From a low of 2,612 steps on a day when we were hammering along the highway, to a maximum of 21,759 when we were out and about enjoying the beauty of Northumberland. So I still averaged around 10,500 steps a day during the trip.

THE Question

As some of you know we took possession of the van on 10th April 2025. The idea popped up on a Friday night and by Monday afternoon we’d bought it. Talk about jumping in with both feet.

But over the past year we’ve asked ourselves multiple time whether we really are camper van people? Before we left home for this trip we were teetering on the edge of selling it. It’s a lot of money to have sitting inanimate on the drive for much of the year. Plus it’s not a cheap hobby when it comes to insurance, road tax (as much as a smallish house here in Denmark), costs for a GPS tracker for the insurance, and other mandatory memberships and running costs. It runs on diesel - do I need to say more with current fuel prices?!

So this trip was crunch time. When we got home we had to decide. Was camper vanning for us? Or were we going to sell it?

And no, I’m not going to tell you the answer right now, you’ll have to read on. Sorry, not sorry!

Let’s start with a few of our favorite things when it comes to travelling and living in a camper van.

Kims Favorite Things

1. He gets to spend more quality time with me (and Evie dog).

2. He loved exploring new places that he hadn’t been to before - both the good ones and the bad ones - and enjoyed seeing the world close-up, a very different perspective compared to staying in a hotel. He felt that we could be our own tourist guides (well that was mostly yours truly), choosing what to do and where to go.

2 ¹/₂. He thought it was nice to feel physically tired at the end of each day. Living in the van is definitely more taxing than living in a house and all that fresh air each day also contributed to us happily keeling over each evening.

3. He enjoyed living a simpler life. Living in a van made him realize just how little you actually need to be happy.

And finally what surprised him the most? How easy it was to drive on the wrong side of the road! He conquered his long-term anxiety about driving in the UK and looked like a pro who’d been doing it for years.

Then again I’m still counting myself as the ‘supremely qualified camper van driver’ as I successfully navigated the Magic Roundabout in Hemel Hempstead (UK)! If you’re not a Brit you won’t know of this version of hell on earth that consists of six mini-roundabouts positioned in a circle around one huge roundabout. BUT I couldn’t reverse the van if my life depended on it!

My Favorite Things

1. I loved the fact that not only did I lose track of days, but also of time itself. By the end of the trip I didn’t even bother to look at my watch. And most importantly I felt that I was truly getting away from it ‘all’.

When I told Kim he asked what was the ‘all’ was that I was trying to get away from? It’s taken me a few days, and actually arriving back home, to work it out. For the first time in three and a half years I was completely away from the memories that still invade my thoughts daily of getting sick, nearly dying, and then spending months recovering. I went days at a time in the van without even thinking about it.

There are so many triggers for those memories in our house. Jumping out of bed at 4am and running to our bathroom to throw up (still didn’t make it in time). Leaving the next night, walking into the garage, to head to the Emergency Room - not knowing I wouldn’t be back the following day and almost didn’t come back at all. Coming home two weeks later to an alien world that I no longer recognized and a face I didn’t recognize in the bathroom mirror! I could go on, but that’s plenty.

In the van I found peace. I found a sanctuary. And it was like a calming balm for my mind.

2. Life is slower in the van, and simpler as Kim said. I enjoyed doing the mundane things - even washing up by hand!

3. And I adored waking early (often around 5am) to enjoy the peace of the morning just as it was getting light. We seemed to be so much closer to nature. Listening to the rain on the roof. Feeling the slight breeze on my skin that would blow through the vans open windows. We made so many wonderful memories on this trip.

And of course I have to add all the things Kim mentioned as his favorites too.

Finally what surprised me the most? The fact that by the end of the trip the van felt like a real home. I got all choked up when I said that to Kim.

THE Decision

So will we keep the camper van?

Drum roll please….

… (suspenseful music)

… (suspenseful music)

… (more suspenseful music)

... (and now you’re bloody bored and probably yelling “Get on with it woman!”)

The answer is … YES!

But I just need to know. When are we going and where are we going next?

I’ll be back next week with something total different, you are free to breathe a sigh of relief that I’m done with camper van tales (for now!) and I’ll be sharing the true story of how Kim and I met, and almost didn’t...

Below you’ll find a link to each original note that I’ve posted each day during the third week of our trip that outlines what we’ve been up to. I’d love it if you’d add a like and a comment on the notes themselves. Thanks in advance!

Day 15 - June 5, 2026 - York to Wheathampstead, UK (306km)

Link to the note

Day 16 - June 6, 2026 - Wheathampstead (0km)

Link to the note

Day 17 - June 7, 2026 - Wheathampstead to Folkestone, Kent (168km)

Link to the note

Day 18 - June 8, 2026 - Folkestone, UK to Münster, Germany via LeShuttle (518km excl. tunnel)

Link to the note

Day 19 - June 9, 2026 - Münster, Germany to Lærkelunden Camping, Gråsten, Denmark (467km)

Link to the note

(And the photo below is 100% real and NOT AI enhanced in any way.)

Day 20 - June 10, 2026 - Lærkelunden Camping, Gråsten to Home (315km)

Link to the note

If you missed them here are Part I (days 1 to 7) and Part II (days 8 to 14) in this series of Camper Van Escapades 2026…

Thank you for reading along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - for FREE here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and you’ll go directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

Please note - all the photos included in this post are my own. And apologies to those who are weird kind enough to enjoy my voiceovers as logistics mean that I can’t include one today - perhaps I can add it when we get home in a couple of weeks.

As some of you know we took possession of a two year old motorhome back in the spring of 2025 - the idea popped up on a Friday night and by Monday night we’d bought it. But are we camper van people? We’re not sure yet. Should we have thought about that before we shelled out a small fortune to buy a van? Most probably!

We’re now two weeks into our travels on this years camper van escapade - across Europe, around the UK, and back through Europe to Denmark.

I’m posting a note a day with pictures of places we go and things we do. But for those of you who don’t tend to look at ‘notes’ here on Substack I thought that I’d bring them together for easy reading in weekly posts. You’ll find links to each note if you scroll down further in this post.

This trip is crunch time for us to decide if we keep the van or if it’s not for us and time to sell it. So while we’ve been travelling we’ve been putting a list of the good things about having a camper van and the not so good things - some more serious than others!

Reasons why having a camper van is cool...

1. NUMBER 1 by a mile is the fact that when we travel by van our little dog, Evie (a papillon / chihuahua mix), can travel with us. It hurts our hearts to leave her at home in boarding kennels and it gives us so much joy to have this daft, funny, adorable little soul with us.

2. It’s a simpler, slower life - there’s time to breathe. With the size of the van you can’t both do anything at the same time. So you have to take a beat. Washing up has to be done by hand - there’s no dumping stuff in the dishwasher. And if you’ve got a lot to do you may have to walk to the washing up station at a site which could be 400m away - think of all those steps you’re getting in and calories you’re burning!

3. It can be a cheaper option for overnight stays - who can get a good hotel in the centre of a city for €23?! In other places you can park for free overnight or pay as little as £12 to park overlooking amazing places, like Bamburgh Castle. And I know, I’m trying not to mention the extortionate diesel prices that we have to deal with right now…

4. You can lose weight - that poorly insulated box called a van can turn into a fantastic sauna when the weather is hot so that you can lose kilos by dripping with sweat while you sleep!

5. You’ll definitely see places and things that you wouldn’t otherwise: we went to sleep to the sound of hooting owls; saw more bunnies in a week than I’ve seen in my entire life put together; and caught sight of red kites, herons, and a snowy owl, all in flight. We got to enjoy deserted beaches and immerse ourselves in nature.

6. The mini bar is very reasonably priced and filled with your favorites - need I say more? What else could you want? You pick what you want to put in the van. Plus you’re travelling with a fridge that runs 24/7 and is clever enough to swap between gas and electricity depending on whether you have the van plugged in or not.

7. Traffic jams have whole new positive connotation - you can hop up for a bathroom break, make a cup of tea, give the dog a cuddle in her car seat, or grab a snack. It might all be a little bit illegal, but as long as you’re not the driver what the heck.

8. It’s your own (comfy) bed on wheels - no more uncertainty of what you’re going to get at a hotel, a friends house, or whatever relatives home. No more lumpy, or overly hard, or way too soft, or far too small for two, beds. Nor sheets that are related to sandpaper or duvets that smell a little funky. Just your own bed that feels and smells like home.

9. There are adjustable arm rests on the drivers seat and passenger seat - need I say more?! Sometimes it’s the small things.

10. Your creativity gets a work out - there are so many little things about van life that force you to find creative solutions. We love tea (me) and coffee (Kim) in bed in the morning, but around the bed are little cubby holes that are very difficult to wiggle a mug into without pouring whatever the hot drink is all over yourself and the bed. Enter a cheap £4 melamine (or the like) tray from Tesco, other supermarkets are available (!), which sits perfectly on the separate central section of our mattress and acts as a table for our morning mugs. Solution found.

11. No more adaptors for your plugs on a gazillion gadgets - all the sockets in the van are the same as whatever type you have at home. No more 2 pin to 3 pin or 3 pin to 2 pin. Only the electricity cable that you plug into the mains connection wherever you are needs an adaptor for the relevant country where you’re touring. And for goodness sake don’t forget that one!

12. And there’s no getting away from it, you can plan all you like, but when you’re in a van you never know what the hell is going to happen next! We are learning to quite like that.

13. And when you get home… your house suddenly feels luxuriously gigantic. All that space! And a proper toilet that doesn’t involve you standing in the shower to be able to sit on it.

Reasons why having a camper van is a bloody pain...

1. The van is a very small space for two adults, especially when one is ‘Viking’ size and I’m not exactly petite myself! You can’t help but bang into things. I have the bruises to prove it. “Donk. Ouch. Suitable expletive.” is our catch phrase when living in the van.

2. A van is a complicated piece of kit, especially at first, and there are a lot of bits to go wrong and worry about besides an engine. A leaking water tank. A fridge on the fritz. A solar panel electricity inverter that has a mysterious fit multiple times a day beeping away when driving claiming the leisure batteries are empty - when they’re not. A water heater that starts dripping water every time you turn it on. Etc. Etc. You have to use the creativity, that I just mentioned, to find short term solutions when you’re travelling and have a good van repair guy on speed dial.

3. You have zero control over who pitches up and parks next to you, sometimes within a few feet of your van, unless you happen to be travelling with buddies in another van. You may get a smoker who lights up every 15 minutes outside his van when the wind is blowing perfectly your way. You may get a music fan who is incapable of keeping his preferences to himself. Or maybe a loud snorer next door when it’s hot and you need every window open to sleep. Ear plugs are a must.

4. Especially in Europe you’ll see people in states you might prefer not to see. A woman walking her dog at 6am in nothing more than her T-shirt and knickers. A guy drinking his morning coffee in his boxers, outside his van, hair standing on end. And in Germany you’ll definitely see more people wandering around a site in their underwear than you’ll ever imagine. But weirdly every single one of them will give you a nod and say good morning!

5. There’s no two ways about it, van life is likely to be more grubby than living in a house where it’s easier to keep things clean and tidy. Plus it’s harder to keep to any sort of routine when you’re moving around to different places. You’ll likely not shower at the same time each day. Some days you might not shower at all and it’s a ‘trucker wash’ i.e. deodorant and a fresh T-shirt. You’re forced to go with the flow, like it or not.

6. And then there’s the toilet roll. Forget the thick, cushioned, soft, high quality one you might have at home. In a van you have a chemical toilet. So the toilet roll has to be easily dissolvable. It’s paper thin - almost translucent. Fragile. Expensive. And it’s an acquired art to do any kind of wipe without it disintegrating in your hand. I’ll say no more… and there’s no nudge, nudge, wink, wink!

7. A van is not a hotel and there’s no room service to call. Well, I say that but I’m lucky enough to at least get ‘tea in bed’ service most mornings and dinner cooked by my personal chef, so I can’t complain. I mean Kim before anyone wonders if we’re rolling in it!

8. And of course there’s no maid - if you want fresh sheets then you have to change them yourself. And changing the beds in a camper van is not so easy. If you’ve tried making up bunk beds you’ll have some idea of the confined spaces and the finger-squeezing potential!

That’s our list for now. Do you have a camper van or have you stayed in one in the past? What do you think are the pros and cons?

Below you’ll find an outline of each day and a link to each original note that outlines what we’ve been up to. I’d love it if you’d add a like and a comment on the notes themselves. Thanks in advance!

Day 8 - May 29, 2026 - Wheathampstead to St. Ives, Cambridgeshire (95km)

Link to the note

Day 9 - May 30, 2026 - St. Ives to Ely, Cambridgeshire (33km)

Link to the note

Day 10 - May 31, 2026 - Ely to Bedale, Yorkshire (315km)

Link to the note

Day 11 - June 1, 2026 - Bedale, Yorkshire to Druridge bay, Northumberland (139km)

Link to the note

Day 12 - June 2, 2026 - Druridge Bay, Northumberland (0km)

Link to the note

Day 13 - June 3, 2026 - Druridge Bay to Bamburgh Castle, Northumberland (68km)

Link to the note

Day 14 - June 4, 2026 - Bamburgh Castle to York (242km)

Link to the note

I’ll be back next week with the final installment of our camper van escapades.

If you missed days 1 to 7 of our adventure then you can read them here:

Thank you for reading along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - for FREE here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and you’ll go directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

To date i.e. May 2026 we’ve taken a few short trips to various harbours around Denmark. And we’ve done a two week trip over to the UK to celebrate Mums 90th birthday, but that involved a lot of driving, a couple of nights each way in the van, and the rest of the time we had the luxury of a real bed and bathroom at Mums. The van then came into its own at home when it served us well as an extra bedroom for us at Christmas.

But… we’re still not convinced that we’re really ‘camper van people’. When we bought the van we first discussed it on a Friday night - yes, there was definitely alcohol involved - and by Monday we were driving three hours to the other side of Denmark to see one that Kim had found online.

It seemed like such a good idea. The biggest plus was that Evie (dog) could travel with us instead of going to kennels. We could explore Denmark properly - all but one holiday in the past 20 years has been to other countries. Then there was all of Europe and beyond. To travel we could just jump in the drivers seat and there was no need to get on a plane (I’ve done enough business travel in the past to last me a lifetime, or two!) or have the hassle of getting through airports or renting cars. We could drive over to the UK to visit Mum and see more of places we love like Scotland. It would serve as an extra spare bedroom on the drive when we ran out of guest space in the house. We might even rent it out for friends to enjoy.

Plus since I came so close to dying, three and a half years ago, we’ve been much more focused on getting out there and LIVING life. A camper van seemed like the perfect vehicle to do exactly that.

But did we think about the practicalities of living in a van or have an idea of what we were letting ourselves in for? The simple answer is most definitely… no!

Whether we’d thought it through or not the van was delivered to our drive just a couple of weeks later.

A little over a year on we’re still in testing mode and trying to acclimatize to van life. We oscillate almost daily from ‘sell the damn thing’ - first uttered after an incident with a low bridge when I was driving, the less said about that the better - to talking about all the trips we could do in it. Luckily, so far, we haven’t both said ‘sell it’ at the same time!

This year spring was (very) late in Denmark, and life too busy, for us to get away before now. So we’ve gone straight into another big van escapade to the UK - very different though to last year as we’ll be spending the majority of our time living and sleeping in the van. Which means I’ll have a lot of bruises - more on that in a later post.

Somehow getting tickets to see Matt Haig on his The Midnight Train book tour triggered us to plan a three week trip, with two of those in the UK - including Wheathampstead (St Albans), St. Ives (Cambridgeshire not Cornwall), Ely, Bedale (Yorkshire), Druridge Bay (Northumberland), Bamburgh Castle (also Northumberland), York, back to Wheathampstead, down to Folkestone (and a final stay at a pub for Sunday roast dinner), and then back onto Europe for (weather allowing) a little diddle up the west coast of Denmark, before heading home. Maybe we’ve been a little over enthusiastic in our planning?!

We’re already a week into our travels and I’m posting a note a day with pictures. But for those of you who don’t tend to look at ‘notes’ here on Substack I thought that I could bring them together for easy reading in a weekly post.

Below you’ll find an outline of each day and a link to each of the original notes that outlines what we’ve been up to. I’d love it if you’d be kind enough to add a like and a comment on the notes themselves - as well as on this post of course!

So here goes nothing - hope you enjoy!

Please note - all the photos are my own. And apologies to those who are weird kind enough to enjoy my voiceovers as logistics mean that I can’t include one today - perhaps I can add it when we get home in a couple of weeks.

Day 1 - May 22, 2026 - Home (Copenhagen) to Flensburg, Germany (315km)

Link to the note

Day 2 - May 23, 2026 - Flensburg to Bremen, Germany (282km)

Link to the note

Day 3 - May 24, 2026 - Bremen, Germany to Gistel, Belgium (575km)

Link to the note

Day 4 - May 25, 2026 - Gistel, Germany to Wheathampstead, UK via LeShuttle (268km excl. tunnel)

Link to the note

Day 5 - May 26, 2026 - Wheathampstead, UK (0km)

Link to the note

Day 6 - May 27, 2026 - Wheathampstead, UK + Matt Haig on The Midnight Train book tour, Rickmansworth (69km)

Link to the note

Day 7 - May 28, 2026 - Wheathampstead, UK (0km)

Link to the note

I’ll be back next week with the second installment of our camper van escapades.

Thank you for reading along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - for FREE here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and you’ll go directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

As a child I remember being told that she’d been dumped on the steps of a church at 2 years old, or perhaps the steps of a nunnery when she was 3 years old. A profoundly deaf child whose family supposedly couldn’t cope with her. It was all a fairytale.

Please note that we are still in the process of uncovering new information. As anyone who has done any family history research knows sometimes you can find out something that later turns out to be partly or even entirely wrong!

And don’t forget, if you prefer to listen to this post then you can click on the play button to hear my voiceover.

Enjoy!

Granny G was deaf. That was a fact. That much we know for certain. But what we don’t know is why she had such a profound hearing loss. We don’t even know for definite if - to quote Lady Gaga - she was born that way.

I think that she’d be described as profoundly deaf. If you did a loud, high pitched whistle you could get her attention - if she was in the mood. So she had a little hearing in the highest frequencies, but nothing in the normal ranges. Still she loved music as she could feel it and would tap her hand on her thigh in time with the beat.

We can’t be sure that Gran was deaf from birth - something called congenital deafness. But Dad was convinced that was the case. He had a direct point of comparison as his own father, her husband, was also deaf. However, he had acquired deafness as the result of contracting meningitis when he was around 2 years old. Dad (and others in the family) could see distinct differences in language development and usage between his parents and the positive effect on my grandfather of having been able to hear for the first two years of his life.

So back in 1903 why would Gran have been born deaf?

THEORY #1 - A VIRUS

Dads best guess was that Grans mother had caught rubella (sometimes called German measles) while pregnant - he was quite attached to that theory and I wish I’d asked him more questions about why that was the case while he was still alive.

Rubella during pregnancy, particularly in the first 12 weeks, is highly dangerous and can cause congenital rubella syndrome (CRS) resulting in miscarriage or stillbirth. If the baby survives then in the vast majority of cases they’ll be born with significant challenges such as deafness, cataracts and other eye problems, heart defects, intellectual disabilities, and/or organ damage.

Rubella was certainly a common disease in 1903 when Gran was born. Historical data suggests that rubella was circulating widely within large urban populations like London. So it makes some sense that he could be right.

However, rubella was generally a disease of the young, with many children catching it between the ages of 4 and 9 years. Her mother, Mary Ann, would have been 31 by the time Gran was born. If the disease was that common, and her mother was that old, isn’t there a likelyhood that she herself would have already had rubella as a child?

I then wondered - could her mother have had rubella twice? Apparently it’s rare and extremely unlikely - once you’ve contracted the virus you typically develop life-long immunity.

There are other factors that make me question whether rubella was the culprit. Gran lived to the grand old age of 95 so I think we can assume that her heart was pretty good, until she sat up in bed on that last day. She did indeed have eye problems, however her glaucoma was only in later life. I didn’t find anything other than her deafness that really associated with being a rubella baby. So perhaps it was rubella, but maybe not.

Could it have been another virus caught by her mother in pregnancy that impacted her baby? The simple answer is yes.

There are a number of viruses that can lead to a baby having deficits in their hearing at birth, or that put them at risk of later hearing loss. For example, though as yet unidentified and unnamed by science, congenital cytomegalovirus (CMV) could have been to blame. It’s passed from a pregnant woman to her baby and it would indeed have been circulating in the London population in the early 1900’s. In the present day it is the leading infectious cause of congenital hearing loss in children.

THEORY #2 - GENETICS

The most common cause of babies being born deaf in the UK is genetic factors, accounting for roughly 50% to over 80% of cases. But you’d be wrong if you thought that it was anticipated as their parents were deaf. Statistics from the National Deaf Children’s Society in the UK show that some 90% of deaf children are actually born to hearing parents. Half of deaf children are born deaf and the other half become deaf during childhood.

These days hundreds of genes have been identified that cause or contribute to deafness. But back in the 1960’s (yes, I am that old!) there was no test that would have told Mum and Dad whether I might be born deaf until I arrived in the world. As it tuned out I was born hearing. Then again Kim says I demonstrate truly astounding levels of marital deafness when I feel like it or when he’s trying to talk to me when he can see that I have my noise-cancelling headphones in my ears! I’d suggest he also has similar skills. ;o)

Looking at the family more widely we know that Gran gave birth to two hearing children. One of whom had a hearing child (aka good old me). And there our family ends as I haven’t had biological kids of my own.

Perhaps there’s not enough evidence to rule it out the possibility that Gran was deaf from a faulty gene, but I think it’s enough to make it seem less likely.

Image caption: one from the family archives of Granny G circa 1974

THEORY #3 - SOMETHING ELSE

If it wasn’t a virus affecting her mother during pregnancy. And it seems unlikely to have been due to some genetic issue. Then why was she deaf?

In her school records it stated that Granny G was deaf as the result of ‘fright’. Yep, you read that correctly - FRIGHT. Generally defined as a sudden, intense feeling of fear, terror, or alarm, often triggered by a shocking, unexpected, or perhaps traumatic event of some kind. Someone somewhere in the family suggested it was related to a fire. But what fire? When was this fire? Did it relate in some way to her being removed from her mother and her stays in hospital? Or is the fire just another convenient family fairytale?

When I started to write this post with the title “Scared to Deaf”, I was playing with words, and it was definitely tongue-in-cheek. It seemed absurd to even think that someone could indeed end up deaf from such a thing as fright.

BUT… just before hitting publish on the original (very different) version of this post I thought I should check if it was a possibility. And when I went to Google I got a surprise.

It seems that intense fright, shock, or severe acute stress can cause deafness or sudden hearing loss, though it’s most frequently temporary. It is a recognized physical reaction to extreme anxiety or trauma. However, it seems to be in only very rare cases that it would lead to permanent deafness.

But back in the early 1900’s medical understanding of the reasons for deafness were still evolving, and psychological trauma was thought, in addition to infectious diseases like meningitis and scarlet fever, to be a factor. It was thoughts that “maternal fright” experienced by a mother while pregnant could cause her child to be born deaf or it could be caused by the “fright of the child” where sudden deafness was attributed to severe emotional shock experienced directly by that child.

An 1880 article described a 12 month survey by Professor Stanich who had looked at reasons for deafness in the population of Sydney, Australia. By far the most common one (around 40% of cases) that he noted was a cold and what I think we’d now assume to include ear or sinus infections. He also listed other diseases that were recognized as being associated with deafness such as scarlet fever, rheumatic fever, mumps, and typhus. But he didn’t stop there and he included some other reasons that today seem incredible such as ‘mental excitement’, ‘sorrow’, and ‘deficiency of sleep’!

Gran was indeed in hospital for extended periods (in both case a couple of months) in 1908 and again in 1909. It’s a period of her life that we plan to investigate further - currently we don’t know what was wrong with her, though we’ve guessed it might be due to something like scarlet fever and perhaps later rheumatic fever. Both of which could be associated with loss of hearing. However, she’d have been 5 or 6 years old by that stage and if she had been hearing up until that time then we assume that her language capabilities would have been far more advanced than they turned out to be.

The mention of colds and ear infections in that Australian survey got me thinking though. As a small child I was hit hard by nasty ear infections on several occasions. Mum still remembers me asking her to go and ask the noisy kids outside to play more quietly. But the noise was all in my head from the infection. Is there something about my family that made us more prone to ear infections as children?

What if the answer to all this is very simple? What if Gran had some sort of cold and ear infection as a baby? What if that infection destroyed her hearing? It’s unlikely that her single mother could have afforded any form of medical care. And there would have been no effective treatment as it was decades before the advent of antibiotics. By coincidence my other grandmother - Granny P - worked on the first penicillin production lines at Glaxo in the 1940’s.

Ultimately we’ll most likely never know why Gran was deaf. And it probably doesn’t matter. She managed to make a good life for herself - married - had children - enjoyed playing with a grandchild - and gave a wide variety of dogs, cats, and other animals (often against their will!), big, squelchy, loving, kisses and cuddles. I have to admit that I definitely inherited the gene for that last part!

I’ll never know if I do carry a gene for deafness as I’m the end of the line when it comes to our genetic pool. But then again, maybe I’m wrong. Gran did after all have an older brother…

To be continued.

If you missed the previous The Granny Gatehouse Project posts then you can find them both via the links below:

If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to each chapter.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

Just a reminder that instead of reading you can also listen to my own voiceover if you hit ‘play’. And apologies upfront for any typos below - it’s rare that I write, edit, and record a post from scratch in a single day. But today was the day. Enjoy!

We went to see ‘Michael’ at our local mini multi-plex yesterday afternoon. If you’ve been living under a rock, perhaps you may have missed this movie being hailed as the ‘controversial’ hit of the year. It’s been panned, actually probably better described as annihilated, by the critics mostly for failing to address the abuse allegations. But it’s been welcomed with open arms by the public who have helped it break records. On it’s opening weekend it took somewhere around $217 million globally, making it the biggest ever opening (by a long way) for a music biopic.

I enjoyed his music back in the day - I was a teenager in the 80’s after all and Thriller came out the year I turned sixteen. You can just imagine all the memories associated with those iconic songs.

I wasn’t a super fan by any means. But I wanted to see the movie and it’s one of the few in recent years that I felt was worth the price of a ticket to see it on the big screen and get the full music experience.

Spoiler alert - my only major criticism yesterday was leveled against our multi-plex operator in that they should have turned the damn sound up a few decibels to make it more immersive and allow for the fact that all the old gits in there (like us) were probably a touch deaf! It was a Monday at 4.30pm so who else had time to go and see a movie other than us more ‘seasoned’ souls?

Picture: IMDB/Lionsgate Pictures

The movie itself didn’t disappoint - I won’t write too much about it’s content and spoil it for others who still want to go and see it. The acting was spot on. Jaafar Jackson did a phenomenal job as Michael, as does Juliano Valdi who plays ‘Young Michael’, and Colman Domingo is nasty as hell as his ogre-like father. It’s well directed and beautifully shot.

There are gentle hints in there that at his drug-related issues originated from treatment required after the awful Pepsi incident, where his hair caught fire while filming an advert. And they quietly let you know that he donated all the money he received in compensation to the hospital burns unit where he was treated.

Oh, and then there’s Bubbles - remember him? A technological creation in this instance, but one that won’t fail to make you smile and laugh. Unless you don’t have a heart that is! And you can’t miss the giraffe that wanders past the window of the house in one scene.

As I sat there in the darkness yesterday, relishing the music in all it’s various forms, I felt that the entire movie had a ‘neverland’ quality to it. I want to say ethereal, but I’m not sure that’s right. Though it’s the word that came into my head at the time.

It wasn’t just the repeated references to the Neverland and Peter Pan of J.M. Barrie fame, but the whole thing felt unreal somehow. They paint Michael as one of the lost boys, or more likely Peter Pan himself - a child, in a mans body, who was never given the opportunity to truly grow up.

Even when you were watching, what you knew to have been a real event, it felt as if it were fictionalized. You had to remind yourself that you lived through those same years. You saw a lot of these stories play out on the TV and in the press. You too fell in love with the Thriller video. Or Beat It. Or Billy Jean. You remember that sparkly glove. And of course, the moon walk.

The facial metamorphosis of Jaafar Jackson from Michael as a late (more natural) teenager to (a surgically ‘enhanced’ or ‘adulterated’ depending on your point of view) adult was phenomenal. At one point in the movie I cried and I mean really cried. Michael and his brothers were performing ‘Human Nature’. A song I’d forgotten that I loved. But it wasn’t that. Staring at that big screen it was almost impossible to comprehend the fact that you were watching Jaafar Jackson and not the real Michael. He had become Michael.

As I said back at the beginning I was a fan. Not the biggest. Though I have to admit I had one of those tight 80’s home perms applied regularly to my naturally dark and usually only wavy mid-length hair. But I loved both Thriller and Off the Wall. I played those LP’s over and over again. I bought the later albums, but I never connected with them the same way. Seeing the film, which focused so much on the time period when I was a teenager and Michael was celebrating his success with those two albums, brought back SO many memories.

I remember walking into our local W.H.Smiths in Watford. The (back) entrance, leading directly into the record department, was buried in the concrete monolith of a shopping centre known as Charter Place. You had to go up five or six steps and through glass swing doors to get in. Just in front of Watford Market. It was always dark, dank, and gloomy in that shopping centre, whatever the weather.

Right in front of that entrance was a shoe repair kiosk. I seemed to be there every week getting new heels on my school shoes - it was a long walk from the station to school each day. I usually added blakeys - anyone else remember those little kidney shaped metal bits that they could nail into your heels to make them wear down slower, but you’d clack along like some sort of escaped tap dancer?

Picture: Watford Observer: Memories of Charter Place

I had a Saturday job from the time I was sixteen at C&A - just a few doors away from W.H.Smiths. I would pop over there during my lunch break. And I did almost every week. I can still see myself walking up to the rack, flicking through the records, and pulling out Off the Wall. Then turning left and going up to the desk to pay. The cash in my hot, sticky hand.

But if you’ve put two and two together you’ll already realize that didn’t happen in 1979 when that particular album was released. That year I would have been just twelve still fairly oblivious to pop music unless it was Tiger Feet by Mud - if you need a refresher (I’d suggest for your sanity not to do it!) then go check it out on YouTube. I can only promise that it’s less annoying than Baby Shark!

The first single that I remember buying myself, actually I may have talked my unsuspecting Dad into buying it, was the theme from the movie Fame by Irene Cara. It was 1980. I was thirteen. And my mother was mortified that I wanted to ‘waste’ my money on pop music. I stirred the proverbial pot by also throwing into the argument mix that I wanted to give up playing the violin at school too. Yep, it didn’t go down well. To put it very mildly. I think I was banned from buying more music for what seemed like forever, though it was probably just a few weeks. I’m sure Mum will correct me!

I think I bought Thriller fairly soon after it came out in December 1983. Oddly I don’t have the same clear memory of that purchase, though I’m sure it was in the same shop. I have a feeling that the first time I went to buy it they’d sold out and I had to come back again the following week. But once I got it I loved it and when I found out that there was another earlier album that I’d missed, i.e. Off the Wall, then I was straight out to buy that too. Probably in early 1984 on another Saturday lunchtime. At least I got there in the end.

I went to see Michael Jackson in concert just once. It brought back yet more memories as it happens to be right where the movie finishes, with Michael strutting across the stage playing the title track from the Bad album.

In the movie they list the location as ‘London, 1988’. But I know that it was Wembley Stadium. It was summer - from my memory it was August rather than the dates he also played in July. And I was there. Along with 100,000 people.

How do I know it was August? Well, that was a full on summer when it came to music. I’d been to see Prince on his Lovesexy tour - playing in the round - in the much, much, much smaller Wembley Arena. I’d seen him not once, but twice, at the end of July / beginning of August. I was a fan, but again not a mega fan. But I have to say Prince was special. An amazing showman, though he did have the advantage of a venue a tenth of the size of the stadium. Having been once I rushed to get tickets to go again a few days later. Can you even imagine being able to do that now in our mad ‘Ticketmaster’ world?!

When we went to see Michael Jackson we got to Wembley Stadium as soon as the doors open. We didn’t run, but there was some speed walking involved, to make our way down the pitch to get as close to the stage as we could. We sat down. Parked for the duration. Waiting hours for the show to begin. Only one person was allowed to go to the bathroom at any one time, while the other spread out, so that we didn’t lose our spot!

Finally he exploded on to the stage. It felt like the entire stadium screamed. The noise was incredible. And the crowd SURGED forwards…

I was lifted clean off my feet. I couldn’t breath in the crush. I almost fell. The crowd moved like a single wave and I was tossed around like a bottle floating in the sea. So close to losing my balance. How can you balance when your feet aren’t even on the ground? I’ve never been so scared in all my life - before or since. It seemed to go on forever, though it was likely a matter of seconds not minutes.

As the crush eased, just slightly, I could get my feet back on the floor. I immediately started to slide sideways. Desperate not to repeat the experience. I just wanted to get out of there. I kept pushing until I was out of the side of the crowd. And there I stayed for the rest of the concert.

In the movie they show girls being pulled by security guys from the front of the crush. Though it wasn’t me (thank goodness) I can definitely say that was real.

I don’t remember anything more about that evening. Nothing. Was Michael a great showman like Prince or even Freddie Mercury / Queen who I had also seen at Wembley Stadium two years earlier? I’ve always said ‘no’. But if I’m honest I have to say that I simple don’t know.

I would go to many more concerts, particularly in the decade after that trip to Wembley. But I never went (or wanted) to see Michael Jackson again.

Make up your own mind about ‘Michael’ the movie. I know it’s not everyone’s cup of proverbial tea. Take it entirely as a work of fiction if you prefer. Personally, I’m looking forward to seeing it again. At home this time. Where we can turn up the sound as loud as we like, dance to our hearts content (don’t worry the neighbours can’t see us), sing along while likely getting the lyrics all wrong, and probably do a little more damage to our already dodgy hearing!

But now I’m off to listen to my Spotify playlist of liked songs - I wonder what’s all over it this week?!

Have you seen ‘Michael’? I’d love to hear what you thought of it? What are your memories of concerts in the 80’s?

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - for FREE here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and you’ll go directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

If there were medals to be handed out for over-thinking and indecisiveness then I’d be winning gold this week. This post has been through many forms and came close, multiple times, to becoming another victim of the delete button. But I couldn’t even make the decision to do that! So here goes, I’ll share. I guess that’s at least a decision! And apologies to those who prefer to listen to my posts - no voiceover this time.

I’d been teetering on the brink for months. Perhaps even years when I think about it.

Mulling it over. But frequently coming back to “not quite yet”. Feeling like I’d miss out - on exactly what, I’m not sure. Letting myself be pulled back into that irrelevant, time-sapping, addictive universe once more.

But I knew in my heart that I wanted out.

I started with a small step. Moving app’s to a back page so that they didn’t stare me in the face every time I opened my phone. I noticed that I didn’t miss them. Well, maybe a little. But I found that if I did open them it was now a conscious decision, a little treat of some mindless scrolling.

Then I took another step. I deleted the app’s from my phone. First Instagram. They took to sending me emails to remind me there was stuff to see and posts I’d not seen. I ignored them. Then Facebook. Just to test how much I’d miss them. I didn’t delete my profile. I just made it more difficult to access them and forced myself to walk to my desk.

24th August 2014 - the profile picture that I used on Facebook for more than a decade. It doesn’t even look like me. OMG what was I thinking with that hat? And that totally weird fake-looking smile? I did enjoy those oysters though!

Thinking back I realized that I didn’t even join Facebook by choice. I was sucked in. Seduced by an invite to a birthday event, sent from Facebook, back in 2005 or 2006. Twenty years ago. I liked sharing my photos so Instagram was added to the mix at some point. Think of all that time spent scrolling that I could have used for something more productive, more positive, or even more relaxing.

At first it was fun. Finding people you knew from back in the day. Old school friends. Contemporaries from university or whatever. Seeing where they were now and what they were up to. Connecting with colleagues and getting to know them better. A positive in some cases, but not so much in others where you realized you didn’t really want or need to know what they got up to outside of work or their personal views on politics.

Over time it became nothing more than a repetitive time sap. Occasionally I’d trip over something about a new TV show that I wanted to see. Or a new movie. Or a little update from someone I cared about.

I thought perhaps I could find a community of necrotizing fasciitis survivors. People that I could relate to and who would get what I’d been through. I did and I didn’t. What I found was small (mostly inactive) groups or one slightly larger one that had to celebrate ‘re-birthdays’ every 5 minutes and shared nothing useful or constructive. Not my cup of tea. Oh, and when I mentioned Substack in a post on that same group, and my FREE book on my experience, I got a warning that I wasn’t allowed to ‘promote’ myself for personal gain?! I left.

I was never going to be the person that wished her husband ‘happy birthday’ on Facebook while lying in bed right next to him. Nor could I bother to take the time to document my (generally boring) daily life with multiple posts a day.

Yet I would scroll. And scroll. Flicking through pictures. Adding the odd like where a real friend had done something or been somewhere nice. But I’d also allow myself to be sucked into rubbish - watching videos from people who thought that they were self-styled influencers, who I didn’t know from Adam, and I really didn’t care what they looked like in the latest hideous dress that they’d ordered on line. Yet I still watched.

When it comes down to it I wasted time that I know full well was too precious to waste.

But why have I teetered on the edge of leaving for so long? What held me back from leaving entirely? It’s simple. When it came down to it I didn’t want to lose that connection with a couple of real friends who I didn’t see frequently, but who posted enough that I didn’t want to miss what was going on in their lives.

Then I realized I could probably find another way.

Many of you will have seen the recent court ruling against Facebook and YouTube labelling them as addictive. And apparently there’s a slew of cases coming through the courts behind that one. But that wasn’t what pushed me over the edge.

When I started reading (well, ‘listening to’ to be exact) CARELESS PEOPLE I knew it could be the final straw. But I was oblivious to just how much impact it would have on my perception of Meta, some of the people leading the company, and it’s driving need to keep making more, and more, and more money any way that it can. Ethically or not.

And yes I know, it’s a book by one person. Who has her own bias. But even then the content is too horrific to dismiss.

Let me go off topic for a minute, I’ll explain why a little later.

Does anyone out there remember ‘The Clothes Show’? It was a TV show that ran in the UK on BBC One from 1986 to 1998. And apparently was reincarnated - after I’d left the UK - from 2006 to 2009 on UKTV Style. Not only was it a popular TV show, it also spawned a monthly, glossy magazine, and an annual live event.

Mum and I went to the live event a couple of times in the early 1990’s. I loved it. I adored fashion, making clothes, and like many young women dreamed (quietly) of being a model. So I was ecstatic to find that you could queue up and book yourself a little photo shoot on the day. And from those photos they would create a (fake) magazine cover with your face on the front! I was in heaven. My picture, stored in my memory box of treasures, is a bit dirty and distorted, but here it is…

It must have been December 1992. Long before the era of ‘SoMe’. I was young, impressionable, just a couple of years post a period of anorexia, and like so many young women I was way too worried about my appearance.

These days it seems that Facebook sells young people to the corporate world. Young people are one of their ‘products’, as I found out in CARELESS PEOPLE. Imagine that I’d put this picture (or another selfie) up on Facebook. And then I took it down. Perhaps I got self-conscious. Thought my face was too round. My lips a little wonky. Facebooks algorithms could spot that I’d done that and would then bombard me with beauty adverts. How would that have affected my young, vulnerable mind? I can’t imagine it would have been in a good way.

And that’s just one small example of the way they seem to operate - there are many more that are far more shocking. As I got to the end of the book I decided that I was done. It was time.

I guess I have to class myself as ‘lucky’. Nothing ties me to either Facebook or Instagram. I don’t need access to the job boards they host or local community / interest groups. I have no need to promote my business on there. And if I ever get to promote my book then I’ll find other more creative solutions.

I remember years ago I did make an attempt to leave Facebook. I hit the button to delete my profile. Then I got an email. Your profile is still there if you want it - you just have to log back in. WTF?! A few weeks later I gave in and did indeed log back in. FOMO won.

So I went looking for that delete button again. Could I find it? I hunted for what seemed like ages, though it was probably just a couple of minutes as my patience had run out and I wanted to get this done NOW! Still I couldn’t find it.

So what did I have to do? I had to Google it! Twice obviously as the button is hidden in two different places in the Facebook and Instagram worlds. How ridiculous is that? Finally I found THE button(s) buried where you’d least think to find them.

Clicked. A sigh of relief. It was done. I was free.

But was I?

There was a final (email) insult still to come.

I’m an adult. I know my own mind (most of the time)! And it had taken me forever to find the right button. But still they thought that perhaps I’d made a mistake?! They wanted to give me time to regret my decision. So generous. And yes, that’s dripping with sarcasm. They sent me this email - I got something very similar from Instagram. Did they have any idea that they’d just put the final nail in the coffin?

I’m thinking about holding a little celebration on the day. To raise a glass to the time I’ve got back, to no more doom scrolling, and to the fact that I’m no longer part of the Meta sales machine. Except for WhatsApp that is, but you have to know which battles are worth fighting and right now it’s not that one.

Do I miss it? Yes, a little so far. But not enough to regret it.

I would dearly love to leave LinkedIn too. It seems to have degenerated into Facebook by another name. But I can’t right now because of my business. It’s my online CV. But in a few years, when having a profile on there is no longer important to me from the work perspective, then it will be part of the past just like Facebook and Instagram. I’ve already moved my business ‘website’ over to a page on my Substack. And deleted the LinkedIn app from my phone so I’ll just access it from my computer when needed.

And of course I worry about Substack. It’s also free, unless you choose to pay for newsletter subscriptions of course. Will we ultimately become the product and be sold to the highest bidder? As a platform I’m well aware that it’s also far from perfect - I’m not even going to mention what’s been going on this past week as there are plenty more eloquent posts about who should or should not be on here. But at least (for now) it’s a place I enjoy and that serves my purpose.

I guess time will tell.

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

As a child I absorbed the story that she’d been dumped on the steps of a church at 2 years old and was brought up by the vicar and her sister. A profoundly deaf child whose family couldn’t cope with her. Mum corrected my version and said that she was left on the steps of a nunnery at 3 years old. But as we know now both versions were actually family fairytales and a sanitized, fictional account of what really happened. Today I thought I’d continue the series by starting from the very beginning - her birth, her parents, and her early years.

I should also note that we are still in the process of trying to find out more. As anyone who has done any family history research knows we think that the information we have currently is correct, but sometimes you can find out later that you had some or even all of it wrong!

And don’t forget, if you prefer to listen to this post then you can click on the play button to hear my voiceover. Enjoy!

Ellen French, who would later be known as Granny G, was born on Tuesday 24th November 1903, at 11 Tilson Road in Peckham. An address that no longer exists. Apparently the weather that month was fine, dry, and sunny, with a fair amount of fog and frost, but nothing noted as severe - unlike the (historically) torrential rain the month before.

She was born just seven weeks before the Wright brothers successfully flew the Wright Flyer for the first time at Kitty Hawk, North Carolina on 17th December 1903. In the summer of that year the inaugural Tour de France was held and won by French bike rider Maurice Garin. And a number of well known celebrities - such as Bing Crosby (3rd May) and George Orwell (25th June) - were also born that year.

When she was born London was growing rapidly. Based on data from the 1901 census, and estimates for the early 20th century, the population of Greater London in 1903 would have been around 6.6 to 6.7 million people. The population rose dramatically in the space of a single decade - from an estimated 5 million in 1900 to over 7 million by 1911.

It wasn’t until around the time that Gran reached pension age that her children - my father and his sister aka Aunty Mary - realized she didn’t have a birth certificate. As she said herself she didn’t like ‘abroad’ so had had no need for a passport and no reason to find a birth certificate. They’d no idea if the name she used was correct. If her date of birth was correct. Or the definitive names of her parents.

They started digging.

Above is a copy of Granny G’s birth certificate. Her mother was listed as Mary Ann French, formerly Hudson and her father as Alfred French. They had married on 17th August 1890, when Mary Ann was 18 years old and Alfred the ripe old age of 23.

Dad also found an older sibling - a brother called Alfred Thomas French - born in 1891, almost exactly a year after his parents marriage. He would have been 12 years old by the time Gran was born. He’s also proved to be a mysterious character - more on that in a later post.

They kept digging.

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In the 1901 census - completed two years before Gran was born - he found her mother. She would still have only been in her late 20’s. She was listed as living at 11 Tilson Road - the address later used on Granny G’s birth certificate - with Grans older brother.

But… and listen it’s a big BUT… now she was listed as a widow. So the man named on Granny G’s birth certificate simply couldn’t have been her father - he’d been dead for at least two years. He was a ghost.

We haven’t been able (as yet) to find out what happened to Mary Ann’s husband, Alfred French. Dad found the death certificate of a man with the same name who died of pneumonia and cardiac failure on 8th May 1899. However, the age is off by a couple of years. The address doesn’t seem to fit. So it’s very unlikely that he is actually our Alfred French. Another mystery to solve.

So who was her father? We don’t know. And it’s unlikely that we’ll ever find out. But going by the 1901 census, and her mothers status in those records as not only a widow but also as head of the household, we’re almost sure that it wasn’t Alfred French and yet that was the name her mother gave when she registered Grans birth on 6th January 1904.

We have to assume that her mother was trying to make her look legitimate. But it seems that at some point her efforts came to nothing. In later workhouse and school records Gran is recorded as illegitimate. So someone, somewhere along the line, worked out that there was an ‘error’ on her birth certificate.

You can understand why her mother did what she did - for her own sake and for her child. Being a single mother, or carrying the stigma of being an illegitimate child, in 1903 was an unimaginably awful predicament when we try to understand it from our perspective here and now in 2026.

Her mother would likely have been shamed, humiliated, and even shunned. And things wouldn’t have been much better for Gran, when she grew up, as an illegitimate child.

Single mothers often formed the poorest sector of society. Finding work was close to impossible. And they frequently suffered from malnutrition and had limited access to healthcare. For some their last resort was prostitution and selling their only remaining asset - their own body.

Single mothers were also sometimes forced into the workhouse…

Workhouses were where the neediest in society had to perform hard physical work to get compensation in the form of the most basic food and shelter. They were the primary method of state-mandated welfare for the poor. But often you still had to prove that you were worthy of being given this support. And going into the workhouse changed your legal status, for example removing your right to vote (obviously only applicable to men at that time).

Those living in such places were called inmates. Inmates wore uniforms, followed strict rules, and were under the control of a master and matron. And yes, these were essentially prisons. The poorest people of society were punished for being poor.

Inmates couldn’t leave of their own free will and had to request permission to go out, even for short periods, for example when they went out to search for work. If one person in a family left the workhouse then they all had to leave. If you were elderly, sick, disabled, (a single mother), or were simply unable to find work in London at that time, then you could end up in the workhouse.

On the 1st October 1908, Gran, her mother, and her older brother are recorded as entering the Gordon Road Workhouse - run by Camberwell Board of Guardians. Gran was still a couple of months away from her 5th birthday.

We don’t know why they ended up going into the workhouse that day. Was it simply a last resort as her mother had no money? Were they forced in there because someone found out that Gran was illegitimate? Or was it something else?

The Victorian buildings that were Gordon Road Workhouse as they look today after being converted into residential flats. Built in 1878 to house around 700 able-bodied inmates who paid for the roof over their heads by performing hard, physical labour each day. Men had to break stones or chop wood, while the women did laundry, cleaning, or kitchen work. The workhouse was built in the grounds of another building - Nazareth House - which had previously been a convent. Could that have been inspiration for the family fairytale that Gran was dumped on the steps of a nunnery? Image credit: Google Street View

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Children had previously lived in the workhouses, in addition to adult men and women who were segregated in different wings. Families were split up as soon as they entered. But the The Children Act of 1908 (the very year Gran and her family went to the workhouse for the first time) was part of the changing landscape of child welfare, providing legislation to remove children from the harsh workhouse environment.

The following day, after they entered the workhouse, rather than being moved to a home for children the records show that Gran was admitted to Camberwell Workhouse Infirmary. Located just over a mile from the Gordon Road Workhouse where her mother and 17 year old brother remained and attached to another workhouse also run by the same Board of Guardians. That hospital would become Camberwell Parish Infirmary in 1913 and in 1948 it was renamed once more to St Giles’ Hospital, which continued to serve the community on that same site until it closed in 1983.

Gran would remain in hospital until she was discharged on 8th December 1908 and taken out by her mother.

We don’t know why she was in hospital for over two months. Though we are continuing to try and find out. Could it have been something to do with her deafness? Was it scarlet fever which was still running rife in London in 1908? Was it some other childhood ailment?

It’s a strange coincidence that scarlet fever is caused by the bacteria Strep. pyogenes, the same bug that caused my necrotizing fasciitis and tried to kill me by eating its way through the flesh of my left leg and abdomen. If you haven’t read that story then start here:

Within a few days of her release from hospital, on 13th December 1908, Gran is recorded as entering the Newlands home for children - one of many also run by Camberwell Board of Guardians to look after more than 600 children in their care. In the vast majority of cases children who had a (often single or widowed) mother recorded had lost her as she had entered the workhouse and just a handful had a mother in an infirmary or asylum. Only around a quarter of the children in care in Camberwell at that time were in fact orphans.

Gran would stay at Newlands for five months, until 22nd May 1909, when she was admitted to hospital again. Once more she was there for almost two months and was ultimately discharged on 17th July 1909. Could it indeed have been scarlet fever, that had resulted in rhematic fever, which put her back in hospital? Or was it something totally unrelated to the reason for her hospital stay at the end of the previous year? We don’t know, but I definitely want to say ‘yet’.

Once she got out of hospital the second time it seems she then went back to living with her mother at a couple of different addresses. Then almost a year later on 7th June 1910 she went back to the Newlands home for children for a few days.

We don’t know exactly what happened in the next few months. But we do know that on 4th October 1910 she was transferred to the Royal School for Deaf Children in Birmingham. It would have been a little over seven weeks before her seventh birthday. She was just a little girl. Removed from everything and everyone she’d ever know.

Along with her school admission record there’s a note - “no contact with mother to be permitted”.

To be continued.

If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

As many of you will have gathered I’m introducing some new themes to my Substack now that I have finished writing and sharing my book. A couple of week ago I launched ‘The Granny Gatehouse Project’. And this week I’m introducing another series of posts called ‘Memory Box Moments’. It’s a very literal tag as each post will focus on a particular moment in my life and be inspired by something that I’ve kept in my memory box.

Before we begin a quick comment about this particular post. Just to be clear, this story relates to my first wedding and first husband. It’s totally unrelated to Kim who is my second, and much beloved, husband. Did I mention that I found his handwritten speech from our wedding in my memory box last week? Something for another post another day.

And don’t forget. You can also listen to this post instead of peering at a screen. I enjoy writing, but I absolutely adore recording my own voiceovers. I hope you enjoy me chuntering away in your ears too.

My first husband asked me to marry him at some point in 1990 - I don’t remember exactly when. I would have been 23 years old that year, he was just 3 months younger than me, and we were already living together.

We’d just been down to visit his parents in Hampshire for the weekend - the first time we’d stayed with them as a couple. In my minds eye I can still see his mother showing me to my tiny bedroom, with a single bed covered in a flowery eiderdown shoved up against the wall. The room was that small. I was totally confused. Apparently he would be sleeping in his old room - on his own. Their house, their rules, and no opportunity for discussion.

Nobody could say that they weren’t old fashioned. As I’d find out later I would continue to develop my persona non grata status over the coming years, even once I was officially their daughter-in-law. They’d have much preferred me to be at home in the kitchen - cleaning and cooking - with a couple of kids running around. Instead I was studying for a degree, then a PhD, developing a career of my own, and generally having a life. At least their dog always loved me and greeted me enthusiastically - much to his mothers annoyance!

But I digress.

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After we got home from that first visit we were lying in bed the following morning. We started talking about what had happened and the ridiculous requirement for us to sleep in separate rooms. Neither of us thought it was reasonable. But discussing it with his parents, and getting them to see reason, wasn’t going to happen. So what to do instead? Well, we swiftly decided that the best way to avoid that happening again was to get married. Yep, I said married!

There was no proposal. No proclamation of love or getting down on one knee. No candlelight and roses. Not even a ring at that point. Just a practical, mutual decision. Is it a surprise that I moved to Denmark (without him) 11 years later?!

Within hours I’d designed my dress. I was so excited to finally make that dress. I’d dreamed of it for years so it was already in my head. It took no time to get it down on paper. Sadly I don’t have that original drawing in my memory box - I wish I’d kept it. I think - like many things - it got thrown out when I moved to Denmark, along with the husband!

I wasn’t a trained designer or seamstress - though we had professionals in the family. But I loved clothes, especially wedding dresses, and was pretty handy with a sewing machine thanks to lessons from Mum and Granny P. I’d even dabbled with making a variety of clothes - suits, evening dresses, bridesmaids dresses, and even a wedding dress, for people to make some extra money. I’d also worked in fashion for a good few years at (the oh so glamorous - not) C&A - remember the rainbow on every high street?!

So of course I was going to design and make my own dress. It never even occurred to me that I wouldn’t or couldn’t do it.

There was no rush to start on actually making my dress as we didn’t plan to marry until spring 1992, more than a year away. At some point Mum and I took a trip into London, to visit John Lewis on Oxford Street, to buy the fabric. A fake (i.e. polyester) raw silk in a beautiful pearly cream. You would’ve had no idea it wasn’t real silk unless you got right up close. We bought meters and meters and meters of fabric for the princely sum of about £100.

In September 1991 I started at university, as a mature student, to study for a degree in Human Physiology. I was the ripe old age of 24 so not really so mature. More a grown up teenager. But I had a flat. A mortgage. A fiancé. And only a student grant to live on - it was back in the day when those still existed. So my main mode of transport was a bicycle. Cheaper than the train. Quicker than a bus. But… a lot more lethal in the busy traffic of East London.

On Thursday 14th November 1991 a car turned through traffic and right across in front of me and my bike. I was just a few feet from his front wing with no chance to hit the brakes until it was too late. The impact folded the front wheel of the bike back into the frame and I sailed over the front of the car, apparently putting out my right arm to save myself. You can read more about that day, and my fascination with ‘blue lights’, in my book.

The short version is that I dislocated my right collar bone, or clavicle to give it it’s proper name. I couldn’t use my right arm. A 5 hour operation was required a few weeks later to try and repair the damage. Then there was weeks of rest followed by physio and rehab. And I hadn’t started to make my dress yet!

By the time I could get going there were only a few weeks left before our April wedding. Amazingly I didn’t panic. I don’t remember even being anxious about it. I knew how fast I could put a dress together. Why would this one be any different? I just got on with it.

A fitted long-line bodice with tiny buttons down the back. Perfectly lined to hide the seams and give it the luxurious feel of real quality as it slid on. A soft ‘meringue’ full skirt, flowing out from my hips with frothy petticoats underneath. Sleeves that came down over the back of my hands in a V-shape with little strings of pearls that went around my middle fingers. Handmade roses and gathered lace adorned the upper edge of the bodice. All designed to sit on top of an amazing, bespoke, white satin and lace corset from the esteemed Rigby and Pellor - the Queens lingerie supplier at that time - hidden on a side street right next Harrods in Knightsbridge.

Just show me the dress I can hear you say! Well, here you go…

Image caption: 18th April 1992 I’m sitting in Mum and Dads lounge - with a big tent right outside the sliding patio doors, set up for our reception after the wedding ceremony at a nearby church. My design was always off-the-shoulder and I had no intention of changing that even after my cycling accident and shoulder surgery. Look carefully and you’ll see that the collar bone on my right side is sticking up. It was repaired a second time, by a surgeon who specialized in rugby injuries (as it’s a common injury in that sport) a couple of years later when the original repair failed. Amazingly my shoulder is fully functional these days and I can prove it by hammering out a couple of kilometers of front crawl in the pool multiple times a week.

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Not only did I make the dress from scratch, but I also made a hair band of fabric roses with pearl centers to match. The picture lacks a bit of detail, but the head band (originally a tartan monstrosity that I got cheap!) was first covered in the same silk and then I made fabric roses, like those around the top of the dress, that were then sewn all over it.

After we decided to get married I got lost in designing, dreaming about, and making that dress. I was absorbed in planning the wedding. Arguing about Amenably agreeing the guest list with our parents. Selecting, ordering, and sending out the ornate, classic 90’s, invitations - including those little formal reply cards for each person to confirm if they were coming on the day. Ordering the tent for the reception in the garden, planning the food, and praying hard for good weather and for the daffodils to still be out.

Did I truly consider if I was marrying the right person? No. Did I think about the fact that I was promising to spend the rest of my life with this person? No. Did I ask myself if we’d made the decision to get married for the right reasons? No. Did I think it was time to get married and that was what was expected of us? Yes. Was I right? No, I don’t think so. And would I do it again? Probably. Otherwise maybe I wouldn’t be right here, right now.

From the get go the dress was far more important to me than the marriage itself. I know, you don’t need to say it. Talk about upside down priorities. But I could only finally see that when I married Kim. Second time around was the charm. And so different. I would have worn an old sack just as long as the end result was guaranteed - that I got to marry him and be with him for the rest of my life. So far (18th wedding anniversary imminent), so good.

I bought that second wedding dress instead of making it. It definitely wasn’t an ornate, flower-adorned, meringue this time. Instead this one was a sophisticated, elegant, bias-cut, Hollywood movie heroine type of dress. I’m sure you’ll see it in all it’s glory in a future post. But for now it hangs in a cupboard right beside the desk where I’m sitting. And I most definitely plan to wear it again one day.

However, I’ll always love my first wedding dress. I’m so proud that I designed it and made it myself. Do I still have it? Sadly, no. Another thing that became part of my past when I left that husband, and the UK, back in 2003. In the end Mum sold it for me - in actual fact I think we gave it away when someone agreed to pay for the postage to send it to them or collected it. I hope it found a good home. Maybe it’s even still out there somewhere.

But I’m happy that I can cherish the pictures of it in my memory box.

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

In my post a couple of weeks ago - A glimpse of sunshine… maybe! - I mentioned Granny G - Dads mum - and my wish to be able to travel back in time to learn more about her life, especially the early years.

Over the coming weeks and months I plan to write more about what Dad (and Mum) and his sister - Aunty Mary - have managed to find out about her. You’ll be able to spot each post as it will always have the sub-title ‘The Granny Gatehouse Project’. Today I thought I’d kick off the series by sharing a couple of the fairytales related to her that fascinated me as a child and as an adult.

I hope that someone out there will find the stories about her life interesting.

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Every family has stories. Some fact and some fiction - whether the people in question realize it or not. Some stories have been consciously changed to sanitize the past. Sometimes to make what happened more palatable or socially acceptable. And to perhaps protect the perceived reputation of the family. Some have gradually evolved unconsciously. Embellished with new supposed ‘details’ - moving farther and farther from the truth over time. Ultimately they become pure fiction, even if nobody realizes it. But true or not these stories continue to be shared and passed down through the generations.

I was lucky enough to grow up with two grandmothers - Granny P and Granny G. And no, I’m not anonymizing their names to protect the innocent - they’re both long gone. Those were literally the names I called them, the letter denoting their last name - P for Phillips and G for Gatehouse. Maybe in the company of just one of them them I’d just call that person Gran.

Our family was small and these days is even smaller. Granny P had one child and Granny G had two - though it would have been three if her first born had survived. For both of them I was their only grandchild. They lived into their 90’s (my 30’s) and survived decades longer than each of their husbands who sadly died just before, and a matter of weeks after, I was born.

Granny P lived a few miles from us so we saw her more. She’d turn up every Tuesday evening to look after me while Mum and Dad went off to play squash. Or come over to help out when I was off school sick. Sometimes when Mum and Dad were going out then I’d go and stay overnight with her as long as I promised Mum that I’d be ‘good as gold’!

But Granny G lived much farther away in Caerphilly, South Wales. It was the days before the M25, and even a complete M4, so I remember the arduous three hour plus drive each way all too well. The dodgy motorway service stops to use the bathroom and stretch our legs. There were no tablets. No mobile phones. No entertainment other than perhaps the radio and Dad singing traditional Welsh songs as we crossed the Severn Bridge into his native Wales.

During my childhood Granny G lived in a ground floor two bedroom flat just around the corner from my god parents and their three sons. It was a reasonable size, but I remember it as dark and the bathroom as exceptionally cold in winter. And then there was the fact that I got to choose to either sleep in the same room as my parents, and lie awake listening to my Dad shake the entire room with his snoring, or sleep on a camp bed in the lounge listening to a whittering budgie all night! Definitely a catch 22 and I learned to sleep with my fingers stuffed in my ears.

In later years Granny G moved to a sheltered flat nearer my Aunt and closer to my parents. I still remember that she had a cleaner who came to help her one day and she wouldn’t even let her in the front door. If Gran didn’t want to do something, or understand what you were trying to say for that matter, she could be a defiant soul!

I already mentioned budgies, but Gran adored all animals and birds. She would shower any animal that she could get hold of with cuddles and big squeaky kisses. Our first cat, Chania, had an early warning system - as soon as she heard Granny G walk in the front door of our house she would rapidly exit out of the back door. Refusing to come in from the garden for multiple days in a row or until she knew Gran had left for home. As a cat she wasn’t that social with the rest of us either, preferring to sit by a door and guard whichever room we were in rather than sit and be stroked on a lap.

Image caption: Granny G in Mum and Dads kitchen circa 1983 - check out those mustard cupboards and patterned tiles! In this case she’s cuddling my little rabbit Sooty. My other rabbit at the time was white, with silver grey ears and bob tail, what was he called? Silver?! Yes, I tend to be a very literal person.

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I knew as a kid that Granny G was different. I watched as she communicated with Dad by doing strange things with her hands and he’d reply by doing equally strange things with his hands. According to Mum, when I was little, I’d sometimes try to join in by doing some random flapping of my own hands and fingers!

As I got a little older I understood that this was sign language and would learn the sign alphabet on a rather (too) snowy ski holiday.

Image caption: I think this was the ski holiday in question where I learned the basic sign alphabet. We took ‘the Grans’ with us a number of times, especially when I was young. In this case it was April 1974 so I had turned 7 years old days before - I just love that look on Granny G’s face! None of us look like we’re having a good time, including me, which is a surprise considering the picture is being taken by Mum with my camera. And what about that matching check lampshade?! The height of 1970’s fashion.

I understood pretty quickly that if Granny G wasn’t looking at me then I couldn’t communicate with her. In fact she was profoundly deaf and only had a small amount of hearing left right at the top of her range. To get her attention, if she wasn’t looking at you, then you’d have to do a high pitched whistle and generally she’d react - if she felt like it!

I don’t remember what questions I asked or precisely when or how I was told the story about her. I think that I knew that she hadn’t grown up with loving parents like me. At some point I was told that she’d been dumped on the steps of a church when she was around two years old. The assumption was that her family couldn’t deal with her deafness. And she was then raised by the vicar of that church and his sister. Right?

I think I just accepted the story. I don’t remember questioning it. Yet I couldn’t imagine it. How would it feel to have been left behind like a bag of old clothes? Then again I’m not sure that I thought it through that far. The story fascinated me. Wasn’t she lucky to have found the vicar and his sister who took her in and cared for her?

But the whole thing couldn’t have been more fictitious. There wasn’t a grain of truth in it - other than that Gran was indeed profoundly deaf and didn’t grow up with her birth parents. We now know that it was our biggest family fairytale, of anything identified thus far, and very different to the true story.

Nobody seems to be sure exactly where this fictional story came from - it may perhaps have been created and shared by her husbands mother. Used to sanitize what must have been a very hard start to her life as an illegitimate child, of a widowed mother, who was living in probably extreme poverty. A child who at almost seven years old was legally removed from her mothers care by a court, who sanctioned that no further contact was to be allowed with her mother. More on that true story in a later post.

My second fairytale was all of my own (childhood) making. And relates to Grans last name - her married name - Gatehouse.

I was and always will be a romantic. I can’t help myself. As a child I dreamed of big houses and castles. Of romances between masters of the manor and female servants. In my mind I created a story about the man that lived in The Gatehouse to a large estate with a drive that went on forever, rolling green lawns, and a spectacular house. A man who took his name from his trade - as many people did at the time. And married the prettiest girl from the neighboring village.

Another dream. Definitely fictional. But I perhaps a possibility?

These days you can go on Google and search for information on the origin of a name to your hearts delight. One website told me that the name Gatehouse comes from the Germanic personal name Godhard, composed of ‘god’, which means good, and ‘hard’, which means brave or strong. Hmmm, I quite like that.

Another site suggested that Gatehouse is derived from geographical locality - OK that’s a little closer to my dream. It could have been 'at the gate-house' of the monastery, church, country house etc. Another similarly described it as a topographic name from Middle English gatehous, taken by someone who lived in the gatehouse at the entrance to a park, city, or other enclosure. Well, that fits with my story, maybe?

But as it turns out, not even close, and definitely no cigar. When Dad delved into our family history he found that our original last name wasn’t Gatehouse at all. In fact we’d been called Gittoes. One ‘t’ or two - I’m not sure.

At some point, well over a hundred years ago, someone thought they’d make it prettier or more attractive and changed it to Gatehouse. Though at the time a whole bunch of people called Gittoes all changed to Gatehouse, so perhaps we were trying to out run the law (!) or were trying to get away from some kind of blemish to the family reputation? Maybe we had a highwayman in the family?! There I go again… Whatever happened, there was definitely no fairytale castle or gatehouse for that matter.

Two family fairytales. Two different sources. And one that I’ll expand upon in future posts. The Granny Gatehouse Project has officially gone for lift off…

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If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

We’ve now also had three weeks of living with a dog who is fine one day and then so sick that she’s being rushed to the vet the next day - more than once. Add to that I had to get some work finished for a customer, which took far longer than it could have done, and if I’m honest I should have completed back in December.

Oh yes, and then there’s the arctic temperatures confining us to the house and requiring one too many hours shoveling snow off the drive and path to the front door. As I write it’s bloody snowing again… there will be more delightful shoveling later!

Is it really any surprise that my mojo has up and left comes to writing? I don’t think I’ve posted a full length missive since November, or even maybe October. I haven’t written so little in the past couple of years as I have lately.

This post has been sat open on my computer for weeks. I write a few words. Give up. Go do something else. At least this post has survived. There are a bunch of others that I’ve started, gotten half way through writing, and then in a fit of peak deleted in their entirety. Not even saved as a draft.

Back in November and were kind enough to nominate me for the Sunshine Blogger Award. Very nice of them both considering I’m definitely not particularly known for writing about sunny topics!

In an attempt to get myself moving again, and taking into account that it’s been a while since I introduced myself, I thought it might be a good time to answer some of the questions that Francis and Cherry posed as part of their nominations. Hopefully it will tell you a little more about me, other than the fact that I survived a major tussle with necrotizing fasciitis, aka some little flesh-eating bacterial bastards, back at the end of 2022 and start of 2023 and came way too close to meeting my maker. Anybody who watched THE PITT last week (season 2 episode 5) will know what I’m talking about.

Much as I’ve tried I haven’t been able to put my hand on Cherry’s note with her questions - sorry ! But I did find Francis’ post so here goes with her questions.

As I’m now months behind the wave I won’t be nominating others for the award, but I have shared in previous posts some of the people I most admire and enjoy reading here on Substack.

So before I hit delete again let’s get this going:

Q1. If you could have a superpower for one day, what would it be?

I’m not sure if it counts as a superpower, but I would love to be able to time travel. Why? Because I’m fascinated by people - specifically in this case Granny G who was my Dads Mum and died a bit more than 25 years ago.

As a child I was told she had been left on church steps when she was just 2 years old as she was profoundly deaf - we guess as a result of her mother having rubella during her pregnancy. It was a story that fascinated me. But in reality we now know that she was legally removed from her (single) mother by a court when she was around 7 years old. You can just imagine how that went considering it was the early 1900’s.

Both my Dad and my Aunt have tried to trace her origins and family history, but it’s proved difficult. I’d be fascinated to have the opportunity to go back and ‘see’ her childhood, get to the truth of her story, and ask her (and her family) so many questions. And yes, of course I’d love to write all about it.

Q2. Which celebrity would you swap lives with for a week?

I don’t have a yearning to be famous or to be in the spotlight. Though I do love a bit of performing when I’m doing my day job running training workshops.

When it comes down to it I like my own life too much. So I don’t really want to swap it for anyone else’s even for a week.

However, I would love to get my book (Hold My Hand: A Journey Back to Life) out to a wider audience to help other people who have been through some sort of traumatic life event. If I absolutely had to swap lives then it would have to be with someone who had a platform and could help me do that.

I’m open to suggestions - who do you think it should be?

Q3. What book do you wish you could read again for the first time?

Without doubt it has to be Me Before You by . I adore that book and have so much respect that she took on such a challenging topic.

This time though I wouldn’t read the final chapters on a plane and scare both the airline staff and surrounding passengers (while totally embarrassing myself) by ugly crying all the way from London Heathrow to Copenhagen. Thank goodness it’s only a 90 minute flight!

Q4. If you could have dinner with an author, who would it be?

I could probably pick ten different people, but the one that stuck in my mind when I really thought about this was Dr. Rachel Clarke. Not only is she a phenomenal non-fiction writer, and previously a current affairs journalist, but she is now a doctor specializing in palliative and end of life care.

You may have seen the TV adaptation of her book Breathtaking, based on her own experience caring for people during the COVID-19 pandemic in the UK.

Or perhaps you’ve come across her most recent book The Story of Heart: Two Families, One Heart, and a Medical Miracle that tells the very real story of two children. One who ends up sadly becoming a heart donor - Keira - and the second who becomes the recipient - Max.

Their names are synonymous with organ donation as Max and Keira’s Law came into effect in 2020. It had changed organ donation in England into an ‘opt-out’ system such that people have to explicitly record that they do not want to be an organ donor if they die rather than the reverse. I’m happy to say that Denmark have also made the same change.

The book is both fascinating and heart-breaking all in one. Rachel has a gift when it comes to explaining medical information in a way that is easily understood by everyone while keeping the narrative moving so that you can’t resist but to turn to the next page.

What would I ask her at dinner? I would definitely be quizzing her about what she’s planning to write next…

Q5. Who would you like to be stuck in a lift with?

The whole idea of getting stuck in a lift gives me the horrors. I’m not mega claustrophobic but you’ll never find me crawling into small enclosed spaces by choice. Those people that climb deep into cave systems and start crawling through tiny spaces make my heart race and my palms sweat! Put me into the confined space of a MR scanner and my eyes are tight shut and I’m fighting to control my breathing.

So I’m going to cheat and say I’d like to be with a lift engineer who can fix the darn thing and get me out of there!

Q6. Who is your favourite author?

Oh wow - this one changes depending on my mood, where I am, the type of inspiration that I’m looking for, and often what book I’ve just read. It’s impossible for me to pick just one.

I sometimes say that when I read a book it goes in one eye and out the other. That’s commonly the case for many fiction books, but it’s more likely that a non-fiction book will stick in my mind long after I’ve read it.

In non-fiction I love Rachel Clarke as I already mentioned and people like who broke my heart with Shattered, Michael Rosen who made me feel less alone after I got sick with Getting Better, Matt Haig who connected with my soul with Reasons to Stay Alive and Rob Beckett who had me howling with laughter and who inspired me to believe that I too could write a book with A Class Act. And as you’ve all probably gathered by now I’ve read or listened to more memoirs than you can shake a stick at and and far too many to list here.

Some authors like Matt Haig have also crossed onto my list of favorite fiction authors with books like The Midnight Library and The Life Impossible. He and , are definitely on my ‘buy every new book as soon as it comes out’ list.

When it comes to fiction I want to be entertained. To escape and get lost in a story. And it absolutely has to be a page-turner. It definitely shouldn’t be too descriptive - “get on with it” I’ll be saying in my head. Books I love will not generally be classed as literary or high brow - no offence intended to any of the authors that I’ve mentioned! I’m not looking to be challenged. Enjoyment is paramount. And I never read what other people would call ‘the classics’.

I love a bit of real life, ideally with some romance thrown in for good measure. To name just a few of the authors I enjoy most - Wendy Wax, , , David Nicholls, , Santa Montefiore, Fern Britton, Karen White, Jane Fallon, Jodi Picoult, Shari Low, Lucy Dillon, Colleen Hoover, Nick Alexander, Lucy Score, Sophie Kinsella, Nicholas Sparks, Elin Hilderbrand, Lucy Diamond, and Rebecca Yarros. And before you ask - yes - I get through a LOT of books.

And if I’m in the mood then my other genre has to be crime. Also top of my list of all time favorite authors is Michael Connolly - I have read every book as soon as it’s been published over the past 25 years. And I am fascinated by his new ‘Killer in the Code’ podcast about the Black Dahlia and Zodiac murders. But also add to the list - John Grisham, Robert Crais, Kathy Reichs, Patricia Cornwell, and my latest favorite Robert Galbraith - the Strike books are absolutely brilliant and I can’t wait to see the upcoming TV adaptation of The Running Grave.

OK, that answer is now stupidly long so I think I’d better move on and stop prattling.

Q7. If you could steal anything without ever getting caught, what would it be?

It would have to be a bank vault full of gold and diamonds, but of course nothing anyone would miss or that would hurt anyone else by going missing.

(I’m making up for the previous answer by keeping this one extra short!!!)

Q8. If you could escape and live in the world of any book, which one would you choose?

The one that jumped into my mind first was The Notebook by Nicholas Sparks. Probably not an obvious choice. I’ve read all his books. And seen all of the movie adaptations. But this is the only one I’ve read more than once. And that is an especially rare beast for me. I can count on one hand the number of books that I’ve read more than once. Actually, thinking about it, it might be more like one finger!

It’s not particularly the place I want to live in, but more the feeling of warmth, love, and devotion to another person, that he evokes. And yes, I am a total romantic softie at heart.

I also adored the movie adaptation with James Garner. I ‘met’ him (aka he walked close enough to me for me to shove my autograph book at him) at a celebrity golf tournament when I was fifteen - on the 26th September 1982 to be exact, at Moor Park Golf Club in Rickmansworth, Herts (UK).

I still have his autograph in my little yellow Snoopy book, along with the likes of Telly Savales (without the lollipop!), Howard Keel, Neris Hughes, Ronnie Corbett, Greg Norman, Henry Cooper, Bobby Charlton, and Daley Thompson, carefully stored away in my treasured memory box.

I know that many of those names will mean nothing to those who didn’t grow up in the UK in the 1980’s. But it makes me smile to think about a few of you out there who will remember them just like me.

Mum adores James Garner (who is sadly departed now) and who can forget him in the Rockford Files - I can still sing the theme tune! And no, you definitely don’t want to here me do that. If you’d like a bit of nostalgia then you can listen to a much better version via this YouTube link: Rockford Files theme tune.

Q9. Do you have any regrets?

I had to chew a bit on this one. I used to regret a lot. Things used to get stuck in my head and go round and round for weeks, if not months. But I don’t allow that to happen these days. As I found out - life is too bloody short. Now I take on board I could have done better and move on. Well, most of the time - I’m human after all.

I believe that when it comes down to it every decision I’ve made (right or wrong) has led me to who I am and where I am now. And I wouldn’t want to change that for anything. I’m living in lovely (most of the time) Denmark. With a husband that I love to the moon and back. And enjoy a very comfortable life that many people would envy.

So do I have any regrets that haunt me? Most definitely not.

Q10. Do you believe in karma?

Hmmmm … I do and I don’t. On one hand I really want to believe in it - what goes around comes around. That’s the way it should be in my mind.

My all time favorite movie is Serendipity starring John Cusack and Kate Beckinsale. Not a well known one by any means. I have yet to find anyone else who has watched it. If you haven’t seen it then you can check out the trailer here on YouTube: Serendipity Trailer and I’m sure you can find the movie itself on one of the streamers.

It wasn’t a big splashy hit back in 2001. I tripped over it on a plane and watched it on one of those awful miniature seat-back screens. And yes I did ugly cry on that plane too! At least it was an overnight transatlantic flight from the US back to the UK so nobody noticed in the dark cabin. Phew!

I guess it shows that in my book I want to believe in karma in the way that things will work themselves out for the best even if it takes a while.

On the other hand I’ve lived in this world too long, seen a lot of things I wish I hadn’t, and worked in both healthy and toxic corporate environments. As a result I’ve seen one too many people get promoted who most definitely didn’t deserve it or put in roles that they were clearly weren’t suitable for. And karma certainly doesn’t seem to have stumped up and bitten them on their proverbial butts. Shame!

So I guess my jaded self has given up on karma in real life. But it likes to dream occasionally when I’m watching a movie.

Q11. If you could give your younger self one piece of advice, what would it be?

That’s an easy one - I would tell her to stop over-thinking and say “fuck off to fear”!!! (Sorry Mum I know you hate the ‘f’ word, but I’m 58 so I think at this point I’ll say it if I want!)

I’m well aware that fear has stopped me doing a lot of things. I don’t regret it, but I do recognize that it’s a fact. I’ve often played things safe. Probably too safe. I’ve let fear change my decision. I’ve made the most of my patience and endurance but never really pushed myself. I’ve lived in my safe zone in so many ways. I’ve been very risk averse. And I have often consciously not pushed boundaries - mine or other peoples.

I’m lucky that I’ve ended up in a good place, but I can’t help but wonder what would have happened if I’d been braver much earlier. Imagine all those sliding door moments…

And that’s all for today folks. I hate to think how many days this post has taken me to write. Far too many. But thanks again to for the nomination and for the questions that have helped me get back to at least writing something again.

Now I’m hitting publish before the delete button starts calling again!

Have a wonderful day.

If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

Image caption: Ringkøbing Marina (Denmark) at sunrise, 17 August 2025.

This post includes the chapters from Part II: A Journey Back to Life and the Epilogue: Hopes and Dreams. If you haven’t listened to it yet then you can listen to Part I of the audio book by clicking here Prologue and Part I: My Story.

As always - thank you for reading or in this case I should say listening!

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If you’d like to know a little more about me then head here… Oops! I forgot to introduce myself…

If you have never heard of necrotizing fasciitis aka flesh eating bacteria then please do go and read this post - it may help save your life or someone else’s one day… NECK-re-tie-zing FASH-e-i-tis... Say what?!

Part II: A Journey Back to Life

Chapter 12: Alien World

Chapter 13: It’s OK That I’m Not OK

Chapter 14: Hold My Hand

Chapter 15: Crowning Glory

Chapter 16: Corporate Detox

Chapter 17: Fighting Fires

Chapter 18: Better Than Before

Chapter 19: Nearest and Dearest

Chapter 20: The Illusion of Tomorrow

Chapter 21: Science & Statistics

Chapter 22: A Trip to the Deep

Chapter 23: A Life Changed

Epilogue: Hopes and Dreams

If listening to the content of this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

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As always - thank you for reading or listening!

It’s THE END.

Well, it sort of is … And it’s not.

Definitely not the end of me writing. Not the end of me being on Substack. Not the end of my mission to continue sharing my story in the hope of helping others.

But it is the end of my ‘book in parts’. Draft 5 of the book is complete - every chapter revised and posted here on Substack. For now I think I’ve made it as good as I can - with help from my early readers (you know who you are and thank you again!) and of course Kim - so it’s time to decide what to do with it next. Put it in a draw. Self-publish. Try to find a publisher. Who knows. We’ll see what 2026 brings.

Whatever happens I’ve loved writing a book - something I’d also promised myself I would do one day. I’ve appreciated (probably more than you can imagine) every like, comment, and restack that I’ve received. And I know many people say it, but I just love the whole Substack community thing.

I have to send a special thank you to who joined as one of my early subscribers back in March and has been amazing in terms of liking and commenting on so many chapters. Then there’s the lovely - finally someone who understood what having sepsis does to you and she’s been kind enough to restack some of my posts. There’s not only adds great comments, but who was also the first person to add Hold My Hand as one of her Substack recommendations - thank you! And there are so many more people that I could, and probably should, mention from all around the world like and a multitude of friends, family, and old colleagues who have supported me.

I went looking for a suitable picture to share with this post got totally distracted. As I looked at photos of myself over the years it got me thinking about how we all evolve. We can’t help it and we certainly can’t stop it. We can embrace change or we can fight it. Getting sick drove my evolution in a certain direction, but relatively the actual time that lasted was such a tiny part of my 58 and a bit years on this planet.

Nothing stays the same for long. However much we want it to. However hard we try to hang on to it. However white your knuckles go. The world keeps turning.

I guess I wrote the book that I wish I could have read early in my recovery. The whole process of writing has given me so much. But I can also recognize that my evolution needs to continue and I can’t allow myself to remain stuck, or even wallow, in what happened almost three years ago.

So I though I’d share a few pictures of how I’ve changed throughout my life. Some you may have seen before, but the captions may well be different. Others I found in my photo archives today. But each says something about the experiences that have shaped me into the person I am today.

Image caption: September 1972 - age 5 - my first day at Eastbury Farm School in Northwood (UK). Those bunches, pig tails to some of you, are currently in evidence again while I’m growing my hair out, but maybe they’re a little less cute on a 58 yr old!

Image caption: 1975 - I’m guessing, but that’s probably around the right year. (Mum - maybe you can correct me?!) And of course Dads favorite pass time i.e. planks stuck on our feet. Can you see why so many people assumed I was a boy when I was a kid?!

Image caption: 2003 - jumping forwards to just days before I left the UK to live in Denmark. The decision was already made, hence the broad smile. I couldn’t leave fast enough. And my first proper (professional) work profile picture. I used it for over a decade!

Image caption: 2005 - back in the UK for a few days and at Silverstone for an amazing ‘Ferrari Experience’ track day. A birthday gift from Mum and Dad. Needless to say I preferred driving the peppy little Lotus Elise (that I spun 360 off the track - oops!) rather than the bag of nails otherwise known as the Ferrari 355. Probably my all time favorite picture of me and Dad. I have a similar one with Mum from that day, but if I post it she will probably come after me. Only joking - maybe …

Image caption: 2007 (23rd December) - ‘that’ picture of when we got engaged at Homewood, overlooking Lake Tahoe (USA), with Dad in miniature in my sunglasses as he takes the picture. Another day where we all had planks strapped to our feet!

Image caption: 2008 (22nd March) - just 3 months after we got engaged. We’d planned to get married in the August of that year, but Kim caught a nasty virus in January that affected his balance and couldn’t even stand up for over a week. It made us ask ourselves ‘why wait’? So we didn’t and arranged the wedding, from soup to nuts, in the space of just two weeks. As we found out at the eleventh hour Kim forgot to confirm the church until it was almost too late!

Image caption: 2015 (August) - me looking windswept at a friends wedding near Glasgow and a (silk) dress with some history. It was from Austin Reed on Regent Street - bought for me by Mum for my Grans funeral well over a decade earlier. As you gather Gran didn’t believe in us wearing black for her final celebration. You can tell that we’re related.

Image caption: 2016 (January) - oh boy, just look at that forced smile. Another ‘corporate’ profile picture taken just a week after I’d started a new job and was wondering what I’d let myself in for! As it turned out - a lot of hours and a hell of a lot of stress. But would I change anything - most definitely not.

Image caption: 2023 (August) - just eight months after I was lying on a ventilator in intensive care I completed one of the toughest challenges of my life - the 2km open water Copenhagen Swim. But FFS - look at those side boobs trying to escape my wetsuit!

Image caption: 2025 (July) - my happy place i.e. in my ‘recording studio’. You can tell from that smile just how much fun I was having recording the voiceovers for each chapter of the book. Imagine if someone let’s me into a real studio one day!

So that’s it folks. For today anyways. I haven’t decided on what my posting schedule will be going forwards so watch this space.

And a quick apology to those that have been enjoying listening to my posts as there’s no voiceover today. It was simply too visual with all the pictures and my sound studio (aka duvet) was busy keeping a friend warm in our guest room! That’s my excuse and I’m sticking to it - it might also be due to the fact that I couldn’t bring myself to listen to my own voice echoing from Kim’s office again!

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any chapters from the book then you can find them easily by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

As always - thank you for reading or listening!

“You will one day experience joy that matches this pain. You will cry euphoric tears at the Beach Boys, you will stare down at a baby’s face as she lies asleep in your lap, you will make great friends, you will eat delicious foods you haven’t tried yet, you will be able to look at a view from a high place and not assess the likelihood of dying from falling. There are books you haven’t read yet that will enrich you, films you will watch while eating extra-large buckets of popcorn, and you will dance and laugh and have sex and go for runs by the river and have late-night conversations and laugh until it hurts. Life is waiting for you. You might be stuck here for a while, but the world isn’t going anywhere. Hang on in there if you can. Life is always worth it.”

Matt Haig, Reasons to Stay Alive

---

A LETTER TO ME IN TEN YEARS

Dear Jacqui,

It’s strange – as I type this, I have the strongest sense of déjà vu. I feel like I’ve been in this exact spot before. Yet I’ve never thought to write a letter to my future self until now. Do you still love listening to the radio? I remember that the inspiration for this letter came from a favorite show. I wonder if you still listen to the same stations – perhaps most of those hosts have retired by now. The world keeps on turning.

The events of these past two years are a distant memory by now. I’m sure that you’ve got to the stage where you don’t need to say to every person you meet that “I’m an NF survivor” – I know that I’m already more selective about who I tell. Of course it’s an important part of your story, but there’s so much more to you. Your NF journey doesn’t define you. But it has made you a better person in so many ways.

When I look back, I can see how much I’ve changed compared to the version of ‘me’ that existed before I got sick. My short fuse and hot temper are (almost) a thing of the past. I have more patience. I’m less judgmental. I’m far better at admitting that I’m wrong. On a good day I’m much more flexible when plans need to change.

I’m kinder. I have more compassion and empathy. And I’m more accepting of others. I’m less critical and better at forgiveness. I’m calmer. I’m less selfish and more considerate. ‘Hate’ rarely, if ever, features in my vocabulary. I appreciate the small things. And I definitely have far greater clarity on what I want out of life.

I know though that I’m nowhere near perfect and there’s still plenty of work to do. Continue to build on those changes and make the effort each and every day to be a better person.

Is it reasonable to assume that you’ve ‘grown whole’ over these past ten years? I believe that you’ll have processed all that’s happened and fully integrated the old and new you. I have a picture in my head of a tree trunk and at the top is another type of tree that has been grafted onto it. The trunk providing all the sustenance that the other tree needs. Helping it grow and expand into a beautiful, luscious canopy.

For a time, I was haunted by the research that suggested NF survivors had a median lifespan, after the infection, of just ten years. It’s fantastic that you’re already on the other side of that. I hope that you’re living life to the full and not looking over your shoulder – the grim reaper is not lurking and waiting to get you.

I wholeheartedly believe that the darkness I saw before that fourth operation wasn’t necessarily a hallucination, but perhaps a precursor to my life potentially ending. My heart was already failing. But you came back from that – you’re a fighter, whether you know it or not. Yet it’s important that you find peace and accept that there’s one certainty in life: we’re all going to die one day.

How’s Kim? Are you enjoying growing old together? He must have retired by now, so you have more free time to do as you wish. I assume you’re still living in your ‘grand design’ house? And have gently molded that wild garden into the haven you dream of? Have you managed to tick a bunch of travel wishes off your bucket list?

And what about Mum? Is she still around? I guess that’s less likely as she’d be hitting 100 by now. But you never know. If she’s gone then I expect that you’ve been wise enough to ask for any help that you needed to process her loss.

How’s Evie doing? She’ll be an old lady by now, but I bet that she’s still bouncing around like the puppy she thinks she is in her head. Just the thought that you’ve had another ten years of her unconditional love gives me such a warm feeling and makes me so happy.

Is she still up for her long walk every morning or has she slowed down a bit? I’m sure she’s still staring at you at 7.30am (yes, she can definitely tell the time), ears pricked every time you use words like ‘so’ and ‘go’ or when you just take a deep breath that might be a signal that you’re about to get out of bed. She’ll be willing you to get up and out in the fresh air with her.

Have you managed to continue starting every day with a smile – especially on those dog walks as you meet other people (and dogs)? Those morning smiles make such a difference to your mood all day. It starts the day on the right foot.

I have no doubt that all the investment you’ve put into both your physical and mental health has been worth it. Are you still going to see Violet? I would take a big bet that you’re swimming, walking, cycling, and spending time on your yoga mat. Don’t forget that sometimes it’s time for a change – don’t just keep doing the same things.

You’ll remember that in summer 2024 you decided that you’d do the Copenhagen open water swim, around the parliament building in the city, once more. A last hoorah. Then it was time to find something new and let it go. I’m sure that you still think about it though on the last Saturday in August each year. Have you found new challenges to keep you fit and active?

I could go on asking questions all day – I’m fascinated to know how the last ten years have turned out. But let’s move on. I’ve learned a lot since getting sick and on my journey back to life. So much has changed. I thought I’d remind you of the five biggest things that I’ve learned – just to make sure you haven’t forgotten.

Here goes.

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#1 KEEP DREAMING

“You have to dream before your dreams can come true.”

A. P. J. Abdul Kalam

I realized that I’d lost the ability to dream. It had slipped quietly away without me even noticing. I’m not sure whether I had any personal dreams for a decade before I got sick. I forgot about the power of dreaming. The passion associated with chasing a dream. The feeling of being truly lost in something – that you love so much – that you have no sense of time.

Before I got sick my life was bleak. It lacked any vibrancy or color. I had no vision of the future – no hopes or dreams. It was incredibly stressful. I was permanently anxious and always exhausted. I felt like I was faking it every day just to survive. My direction wasn’t decided by my dreams, but rather by money, the desire for status, and day in, day out work.

As part of this journey, I’ve allowed myself to start dreaming again. I now appreciate the value of having and nurturing a dream. The sense of purpose it can give you. And I’m loving it. I’ve found inspiration and renewed energy in places I would never have expected.

You’re still coming up with big, beautiful, inspiring dreams – right? Who cares if you think they’re realistic or not. The whole point of a dream is the bigger, the better. Continue to harness that joyful feeling of finding a new dream.

And now you have the evidence that dreams can and do come true. You had a dream of writing a book and look at what you achieved. It gives me goosebumps. You managed to tell your story for all the people that couldn’t.

All the people who have been so damaged and distressed by the experience of surviving NF that they couldn’t revisit it, let alone talk publicly about it. All the people that sadly died as a result not only of NF itself, but also sepsis, septic shock, and all the other problems that can come along with it. This has all been for them.

I don’t know what the future holds, and I don’t need to know. But I believe that dreams will keep me (and you) on the right track to keep learning, growing, and always looking for fresh inspiration.

#2 YOU ARE ENOUGH

You are. You have enough. You are valued. You are worthy of love. You are loved. You are appreciated. You need nothing more. You are enough.

I know this has probably been one of the toughest for you. I felt like an imposter in my own life for such a long time – before I got sick and even for a time afterwards. Using a fake persona like body armor to get through each day. Saying that I was OK, when I was anything but.

But I’ve found out that it’s safe to come out of hiding. To just be me. People don’t run away screaming. They don’t expect anything I’m not. I can be my authentic self – finally. And it feels right.

It’s not easy. That desire to hide isn’t entirely gone. It takes work each day. Are you comfortable now with ‘just’ being ‘Jacqui’ again? Have you gotten better at just being you?

You have everything you need and I have faith that not only are you ‘living lighter’ (mentally and physically), but you’ve also adjusted to a mindset of abundance instead of scarcity. Can you appreciate that life’s possibilities are totally limitless? The future, whatever it will be, is full of new opportunities. Fresh challenges that you can approach with plenty of optimism and a good dose of generosity.

I thought that my purpose after this experience was to be happy. It was an impossible quest. It made me miserable and anxious. It dragged me down, because I couldn’t find it. I was trying too hard.

In the past few months, I’ve found my purpose and tapped into my creativity. Sharing stories and information to help others. Creating something that inspires people. Something that makes them feel something. Something that moves them. I jump out of bed in the morning and can’t wait to get started. I feel valuable again. I’m contributing to the world. And I feel less alone.

Over the past ten years I’m sure your purpose has continued to evolve. What is it now? I’m almost certain that you’re still writing. I wonder what you wrote next?

#3 KEEP WALKING ON RAINBOWS

“The only moment in which you can be truly alive is the present moment.”

Thich Nhat Hanh (Buddhist monk)

I have that old Katrina and the Waves song in my head – whatever the weather I hope that you’re still ‘walking on sunshine’. Experiencing the joy of seeing the blue sky that is such a special color over Denmark. Or perhaps it’s more about walking on rainbows with your love of colorful shoes?!

I believe that we can’t fight the universe, but I don’t believe in us each having a pre-defined destiny. I expect that you’ve continued to learn how to lean into the flow. To stop fighting the current. To trust the process. The future will be whatever it will be.

Today I still find it challenging. Ten years on I’m sure that you’ve become an expert. I have an image in my mind of you floating like a starfish, on your back, in a quiet, gently drifting stream. Letting yourself bob along. Totally relaxed. Curious to see where life takes you next.

I hope that you’ve continued to find more ways to get into your state of flow. Just like you’ve found with the process of writing. And that you’ve found ways to channel that energy into letting yourself be happy, and into recharging and healing both your mind and your body. Don’t forget – happiness comes when you try the least.

Have you managed to find a ‘lightness of being’? Not the unbearable kind made famous in the book by Milan Kundera, but the pleasurable kind. The ability to relax and go where the energy takes you. Instead of trying to drive, control, and hold too tight – choking the life out of any enjoyment.

I’m very much aware that I still have a challenge when it comes to doing nothing. To letting myself just ‘be’. I fret. I get anxious. That little voice in my head tells me over and over that I should be doing something.

But realizing that’s the case is half the battle. I hope you’ve been able to make progress. If you didn’t manage it today then there is always tomorrow to have another go. Don’t beat yourself up. Worry less.

Remember. Let it be. Just let go.

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#4 GIVE YOURSELF PERMISSION

Nobody else can give you permission to eat that delicious slice of cake. It’s up to you to make that decision. Don’t go looking for permission from others – you’ll never find it. Remember to let yourself enjoy that sweet treat sometimes.

I still have a hard time being kind to myself – I’ll gladly admit that. I’m a strict task master. I’m stubborn as hell. Once I get it in my head to do something it’s difficult to change direction. I bet you’ve continued to fight that good fight.

I’m optimistic, that if you’ve done nothing else, that you’ve learned to be nicer to yourself. Being kind doesn’t mean lazy. It means giving yourself permission to take a beat – maybe take a day off your exercise regimen once in a while. Or give yourself a cozy afternoon sat on the sofa reading a good book. Or just let yourself write, to recharge your batteries, when you should be doing something else.

Give yourself permission to be happy. And to feel whatever you need to feel at a given moment – feelings always pass. Permission to have a good day. To have a bad day. To be yourself. To dance whenever you fancy to a song you love on the radio. Don’t take yourself too seriously.

Don’t keep waiting for a day, that may never come, to be happy or be whatever it is you’re waiting for. Today is the best day to enjoy life. The only day. Don’t wait until you ‘retire’ – for that matter, don’t ever retire. You still have plenty to give and share with others.

Revel like a pig in muck in joy. It’s the most wonderful feeling. We talk so much about happiness, but joy is next level. It fizzes in your veins. You can’t help but smile. And you infect everyone around you!

And most definitely give yourself permission to simply get on with living your life.

Let yourself just be you.

#5 LOVE!

It’s a fact – nothing else matters. All that will remain when you’re gone is love.

Has the fascination with listening to memoirs – particularly those read by the authors – continued? Or was it a transitional thing because of writing this book? I have a feeling that it’s still something you enjoy.

Maybe by now you’ve worked out what you’re really looking for in those books? I think I know. It’s help. Help to understand how to love yourself. Even to just like yourself a little bit. That would be a start. That’s always been the thing that you’ve found the hardest. It will have been your biggest challenge over the past ten years. There’s no easy solution, but I’m sure that you’ve been working on it.

In one of those memoirs, I came across a quote that resonated so much for me. It’s usually given as “when one door closes another door opens”. However, the real quote by Helen Keller is:

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us."

Are you still looking at closed doors? I think not. I’m sure that you’re enthusiastically walking through plenty of newly opened ones.

Go get on with living your life.

Keep holding hands with Kim.

Cuddle Evie.

And show those you care about just how much you love them.

Nothing else is more important.

My experience over these past couple of years has become part of your past. It may sound weird, but I’m grateful for what happened to me. I wouldn’t be who I am now, or who you are in ten years, without this experience. It’s part of my history. Part of what makes you special. Never to be forgotten.

Embrace the gift of life. I’m not asking you to be grateful as I know that’s not something that sits well with you and I can’t imagine that’s changed. But I have confidence that you look forward to the future with not only hope, but also excitement.

Remember to smile EVERY morning. It’s a new day full of wonderful opportunities – just open your eyes and they’ll be right there in front of you.

Be present. Yesterday is gone. The future beckons.

Loads of love,

Jacqui

4^th October 2024

Image caption: a beautiful peony from the garden at our old house. I have yet to add these to our current garden - another autumn job to add to the list. I picked it for this post as I recently found out that it’s the flower of ‘healing’. Why is it associated with healing? Well apparently it relates to Greek mythology as the the peony is named after ‘Paeon’, the physician of the gods, who used it to heal wounds. Whatever the association I just adore these beautiful, big, blousy flowers.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

As always - thank you for reading or listening!

YOU’LL NEVER BE THE SAME AGAIN

Even if you survive NF, your life will never be the same again. It will be irrevocable changed. These infections leave many thousands of people all around the world with life changing consequences – be they physical and/or mental.

NF wounds can be longer and larger than you can almost imagine. If you measured mine, then they totaled maybe 50 to 60 centimeters (approx. 24 inches) – relatively small compared to what some other NF patients wake up to. But still it felt like it took forever for my wounds to heal - the three months it took was, by NF standards, pretty fast. Other people have wounds that take years to heal or never fully heal in their lifetime.

And then there are skin grafts which can be essential to close some of those large wounds that have no chance of closing without additional intervention. I was told initially that I would need a skin graft with the donor skin taken from my right thigh to be transferred over to my left inner thigh. I was incredibly fortunate that in the end the plastic surgeons worked their magic to close my wounds without a graft. But it was a near miss.

As many as 60% of NF patients need a skin graft ⁽¹⁴⁾. Skin grafts don’t act like normal skin, and they are never attached to your body in the same way as they were in their original location. They still take ages to heal and up to two years to mature. You now have two wounds to heal when your body was having a hard enough time with one.

Skin grafts get dry. They don’t sweat. They can be more sensitive to pain even after they’ve healed. They can look discolored, patchy or uneven. They never have the same sensation when you touch them as normal skin. They can break down especially when they’re still new. And over time they can build up scar tissue around the edges. My heart goes out to all the NF patients who had no other option and had to have a skin graft.

Then there’s all the tissue that has been removed in the surgeries and the nerves that have been cut. In some instances that leaves the NF patient with areas of skin with little or no sensation. I know from experience that some of the sensation will come back over the years, but it will never be the same.

Then there’s the unexplained pain in the affected area – burning sensations, tingling or shooting pains, and sometimes unbearable itching ⁽¹⁸⁾. For some patient’s reconstructive surgery or scar revision surgeries may be required. I only had two of these procedures, but for other NF patients these surgeries can go on over many years and the number of them can get into double digits ⁽¹⁸⁾.

Other NF patients have had limbs amputated to stop the spread of the infection and deal with the destruction of tissue. The estimates of how many NF patients lose a limb vary widely – again because every infection story is unique. In a Danish study this affected only 7% of NF patients ⁽⁸⁾, but in other studies it’s been much higher – for example it was almost 20% of patients in a German study ⁽¹⁴⁾.

Patients that have been in septic shock may experience some level of organ failure. For some, like me, we’re lucky that the shock reversal treatments were implemented quickly enough, along with all the other treatments, to spare us from permanent damage. But others are not so lucky and have to deal with conditions such as kidney or liver failure that can require transplant surgery if they are fortunate enough to find a donor.

Of course, all these things also affect your overall quality of life. Things you used to be able to do may no longer be possible. Or it may take many months or even years to be able to do them again.

A recent study found that only 50% of NF patients reported making a ‘full recovery’ two years after they were discharged from intensive care ⁽¹⁾. While you’re in the acute stages of the illness you receive state-of the-art treatment and care, but as time passes rehabilitation support becomes less readily available and less patient-centric. In many cases long-term follow-up simply isn’t available. It’s left up to you to fight your way back. And that’s a heavy weight to carry when you’ve already been hit so damn hard.

NF is very different to other diseases when it comes to medical specialty ownership which also affects the follow up that you can expect – at least here in Denmark. Cancer patients are supported by well-established multidisciplinary teams. Professionals that wrap around each patient, for the long run, until they are hopefully cured. But just as I found out, once you are no longer acutely ill and your NF wounds have healed there is often nobody left to hold your hand from the medical perspective. It’s up to you.

If that’s not enough you may also not live for as long after the infection as if you hadn’t had it. As I mentioned in an earlier chapter data from a US study suggested that median survival post NF may be just ten years ⁽¹⁹⁾. They also found an increased risk of dying from other infections compared to the wider population - such as pneumonia, cholecystitis (an infection of the gall bladder), urinary tract infections and sepsis ⁽¹⁹⁾. But the data is confounded by so many factors, including the unique nature of every NF case and other health factors. So maybe it’s right or maybe it’s not.

And that’s just the physical stuff. On top there are the mental scars of living through this type of often highly traumatic experience. There’s no question in my mind, and the research data supports it, that the psychological recovery takes longer than the physical recovery ⁽¹⁾. NF patients are rarely offered psychological counselling and a patient in one study said it was much easier to get treatment for anger management than the psychological impact of having been through NF ⁽¹⁾.

Once again you must take on the challenge to get the support that you need and, in some instances, you also have no option but to pay for therapy yourself, if you even can. I was relieved to find out that I wasn’t the only patient to store up morphine to end it all if it all became too much ⁽¹⁾.

At least one study has suggested that a return visit(s) to the intensive care unit, offering both physical and psychological assessment and other support, can help NF patients in their recovery ⁽¹⁾. I was offered a visit to the unit where I was treated, but the purpose of the visit wasn’t clear and in the end I cancelled a couple of days beforehand.

I can’t blame anyone for that as at the time when I took the phone call about the invite I was not long out of hospital, my memory was patchy, and I was still easily confused. I said yes to the visit initially, but when it came to it, I just couldn’t face returning to that environment less than two months after I was discharged. I wish someone had provided something in writing about what the visit was for, what I could have expected, and what was in it for me.

And then of course it’s not just you that’s been affected by the experience – you have to think of those around you - your family and other loved ones – and what they’ve been through. They need to recover too. And will likely also be affected forever by the experience.

When you get sick with NF the last thing on your mind is when you’ll be able to go back to work. However, for many people that question arises quickly as they start to recover because of the financial consequences of being away from work for an extended period.

Data suggests that on average it takes an NF survivor almost eight months before they can return to work, with that period ranging from between two months to two years ⁽¹³⁾. And that’s IF you can return at all. Most employers simply don’t understand this disease, it’s severity, or the long-term impact ⁽¹⁸⁾.

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NF RESEARCH

I’ve worked in clinical research for almost thirty years and my roles have touched a variety of diseases, medical conditions, and the development of a wide range of new medicines. Clinical trials are a type of research study that evaluates novel tests and treatments and their effects on human health outcomes.

For example, they may test a potential new medicine or novel combinations of medicines to see if they work. These trials may also evaluate the effectiveness of medical devices (machines) that may help things like wound healing. And they may also test new markers – for example in your blood - that may help diagnose a disease or measure its progress.

Clinicaltrials.gov is an online database of clinical trials that was established by the National Institute of Health (NIH) as a central global resource to provide current information on clinical trials to members of the public and health providers. Anyone can type in the web address and access the information.

As of November 2024, there were just 25 entries (clinical trials) in the database for NF – of those 16 were completed/terminated, five had an ‘unknown’ status and just four were active. Those numbers are tiny. Compare them to the results when you search for ‘lung cancer’ clinical trials and you’ll find 12,543 entries i.e. trials.

There’s a similar pattern if you look at the number of scientific papers published on NF via PubMed – another online database set up by the NIH that is publicly accessible. The search term of NF produces a little over 6,000 papers, with 316 published in 2023. That number has increased somewhat over time as if we look back twenty years to 2003 just 116 papers were published on NF that year. Again let’s compare to lung cancer and you’ll find over 450,000 papers, of which 26,000 were published in 2023 alone.

Why is there comparatively little research being done in NF? I believe that there are a number of reasons. NF is a relatively rare disease with a treatment protocol of surgery, antibiotics and intensive care support. Of course there is research into novel antibiotics, but that is more generalized and not specific to NF. Plus, the pharmaceutical companies have no big blockbuster drug for NF that they can develop that will make them gazillions of dollars.

Then add to that the difficulty in doing randomized trials to get more conclusive results – these are studies in which the participants are divided by chance into separate groups that compare different treatments or other interventions. The ‘chance’ element means that the groups will be similar and so the effects of the treatments they receive can be compared more fairly.

But in such a fast-moving, life-threatening situation there are also ethical considerations of doing such studies plus extremely high levels of variation in the patients and their individual situations - diversity of disease progress, diverse nature of patients’ comorbidities, varying treatment regimes, different lengths of time to diagnosis and from diagnosis to first surgery etc.

There is also the challenge that some NF patients are simply too distressed and traumatized to participate in any research, talk about their experience, or complete any questionnaires about their recovery ⁽¹⁴⁾.

The biggest possible gamechanger in terms of NF treatment would be not to have to treat it at all and instead have a vaccine against the bacteria that cause these awful invasive infections.

There is a long history of work to try to develop a vaccine specifically again Streptococcus pyogenes – the bacteria that caused my sickness and that is the most common culprit in NF ⁽²⁰⁾. Initial interest in the early 20^th century focused on a vaccine as this particular bacterium also causes other illnesses such as scarlet fever and rheumatic fever. However, as the incidence (and seriousness) of those diseases declined the interest in developing a vaccine also waned.

Since 2016 interest has been revived and bolstered by World Health Organisation (WHO) support. Research is ongoing. At least one team have started work on a Group A Streptococci vaccine here in Denmark and they aim to have a vaccine ready to start clinical trials by 2027 ⁽²¹⁾.

I have real hope that it could save others from going through what I did.

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FINDING A COMMUNITY

The nature of NF is that many patients feel very much alone. Finding a community that you can relate to is so important during the recovery process and yet it’s incredibly hard. It’s very unlikely that you’ll happen to trip over another NF patient in daily life – I’ve only talked to one person who happened to know someone else (on the other side of the world) who had NF.

There are a relatively small number of Facebook groups. The largest global group has around 2000 members (composed of both survivors and their loved ones) and spends more time wishing people happy birthday or happy re-birthday than sharing anything useful. Then there are smaller local or country-specific groups like the one for Danish patients with less than 175 members and zero posts in the past eight months.

Even if you can find another NF patient it’s often difficult to relate as everyone’s experience is so unique and it can feel as if they have had a totally different illness. Rarely have comments in any of these groups resonated for me. But occasionally something useful does pop up. I remember that the first clue I had that my hair falling out was a direct result of my illness came from a Facebook post where someone else was asking about a similar issue. I was flooded with a sense of relief that my hair loss was a common experience and then I went off to good old Google to find out more.

Gradually I have become addicted to listening to memoirs. I don’t know why listening rather than reading, but somehow hearing the persons own voice creates a much stronger connection to their story than just seeing the words on a page. But it must be the author themselves narrating the book – anyone else simply doesn’t work. The speed at which they speak, the tone and timbre of their voice, conveys their feelings and the emotions attached to those words. It’s as if you can absorb the story in 3D instead of 1D.

I’m particularly partial as you may be able to guess, to books that tell stories related to some kind of medical diagnosis and recovery (or not) or near-death experience. I relate to the struggle and fighting back from the brink. The dramatic alterations to your personal perspective on life. It’s all about just how delicate the balance between life and death really is …

I thought that my need to listen to these books was related to learning about how other people had written their memoirs and to me working out how I wanted to write this book. However, its only writing this chapter of the book that the penny has dropped, and I’ve realized that this was my way of finding my tribe and finding people whose experience I could relate to so that I felt less unique and less alone.

I’ve concluded that it wasn’t actually necessary to confine myself to looking for my community in such literal places as with other NF patients. Surviving NF is a traumatic life event, but there are many different types of those. All of which turn your life upside down. And there are more commonalities across them than you may think. These days I keep a more open mind about whose story will resonate for me and also who will connect with mine.

OTHER RESOURCES FOR NECROTISING FASCIITIS

The Lee Spark NF Foundation

National Organization for Rare Disease (NORD) – NF Page

U.S Centers for Disease Control and Prevention – About NF Page

REFERENCES

1. Patient and family experience 2 years after necrotizing soft-tissue infection: A longitudinal qualitative investigation – J Adv Nurs 2023 – Ingrid Egerod et al.

2. Prognostic Aspects, Survival Rate, and Predisposing Risk Factors in Patients with Fourniers’ Gangrene and Necrotizing Soft Tissue Infections: Evaluation of Clinical Outcome of 55 Patients – Urol Int 2012 – A. Martinschek et al.

3. Emergent Management of Necrotizing Soft-Tissue Infections – Medscape 2024 – Brit J Long

4. Bacteria – National Human Genome Research Institute

5. Invasive Group A Streptococcal Disease – Drugs 2012 – Andrew C. Steer et al.

6. What we know so far about strep A child deaths in the UK – New Scientist - Michael Le Page – 07 December 2022

7. Signs, symptoms and diagnosis of necrotizing fasciitis experienced by survivors and family: a qualitative Nordic multi-center study – BMS Inf Dis 2018 – Annette Erichsen Andersson et al.

8. Incidence, comorbidity and mortality in patients with necrotising soft-tissue infections, 2005-2018: a Danish nationwide register-based cohort study - BMJ 2020 – Morten Hedetoft et al.

9. Severe Strep Infections Rebound After Pandemic Lull – Medscape 2023 – Brian Owens

10. (In Danish) Invasive streptococcal infections have claimed the lives of 35 Danes in a few months - Invasiv streptokokinfektion har kostet 35 danskere livet på få måneder – TV2 03 March 2023

11. (In Danish) A Danish professor has found a new method – using buttermilk against flesh-eating bacteria - Dansk professor har fundet ny metode – bruger kærnemælk mod kødædende bakterier – TV2 06 October 2023

12. Flesh-eating disease linked to gene differences – New Scientist - Emma Young – 17 November 2002

13. Impact of severe necrotizing fasciitis on quality of life in the Netherlands – EJTES 2022 – Sander F. L. van Stigt et al.

14. Necrotizing fasciitis and the midterm outcomes after survival – SAGE Open Medicine 2019 – Christiane Kruppa et al.

15. Key pathways and genes that are altered during treatment with hyperbaric oxygen in patients with sepsis due to necrotising soft tissue infection (HBOmic study) – European Journal of Medical Research 2023 – Julie Vinkel et al.

16. The history and development of hyperbaric oxygenation (HBO) in thermal burn injury – medicina 2021 – Christian Smolle et al.

17. Hyperbaric oxygen treatment in the management of necrotising soft-tissue infections: results from a Danish nationwide registry study – BMJ 2023 – Morten Hedetoft et al.

18. The impact of necrotizing soft tissue infections on the lives of survivors: a qualitative study – QoLR 2023 – Jaco Suijker et al.

19. Long-term outcomes of patients with necrotizing fasciitis – J Burn Care Res 2010 – Timothy D Light et al.

20. A controlled human infection model of Streptococcus pyogenes pharyngitis (CHIVAS-M75): an observational, dose-finding study – The Lancet Microbe 2021 -. Joshua Osowicki et al.

21. (In Danish) Scientists to develop a vaccine against streptococci - Forskere skal udvikle en vaccine mod streptokokker – Statens Serum Institut - 14 Sept 2023

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Next THURSDAY I’ll share the final chapter of my ‘book in parts’ - Hold My Hand: A Journey Back to Life. I can’t believe we’re almost at THE END. Then again there is no ‘end’ as my journey continues…

Image caption: morning meditation walking Evie.

As always - thank you for reading or listening!

HOW IS NF TREATED?

Just like so many things with NF there’s no definitive rule book when it comes to treatment.

You can be sure that there will be repeated aggressive surgeries to remove the dead, infected tissue. A NF patient will go through on average four operations, but depending on the scale of the infection it can be many more and in fact well into double digits ^(13,14). Surgeries are more frequent initially – at least daily – and then become more spaced out - every other day – and finally move out to longer intervals in-between. For once I feel I was almost ‘normal’ with my five surgeries over those first ten days.

You’ll also certainly have gallons of i.v. antibiotics pumped into your veins – selected to attack the specific bacteria involved.

And in many cases, you’ll be admitted to some kind of intensive care department in a hospital while they work hard to keep you alive – pumping other drugs into your system to keep you sedated and opioids to ensure that you’re pain-free.

Treatment protocols for NF haven’t really changed for decades ⁽¹⁵⁾.

THE HEALING POWER OF OXYGEN

I think most of us, including me, would think of diving accidents when someone mentions a hyperbaric chamber. These specialist pressurized chambers are best known for their use in the treatment of decompression sickness, sometimes known as ‘the bends’. It’s caused by gas, previously dissolved in blood or tissues, forming bubbles in blood vessels when a diver comes up from deep water too quickly. However, these chambers also play a role in the treatment of a wide range of illnesses and injuries, including serious infections such as NF.

We may think of this as a ‘modern’ treatment, but when I researched this section of the book, I was stunned to find out that hyperbaric therapy, initially with just pressurized air in a metal container, was first utilized as early as 1662 by a British physician called Henshaw ⁽¹⁶⁾. Though it was only in 1937 that hyperbaric oxygen therapy (HBO₂T) was first used successfully to treat decompression sickness.

By 1955 HBO₂T was being applied to treat the effects of radiation therapy in cancer patients. Soon after they also started to treat patients with burns and other conditions.

HBO₂T is now known to potentially benefit a wide range of patients with:

• Bubbles of air in blood vessels, such as decompression sickness.

• Serious, life-threatening infections, like NF.

• Wounds that have problems healing, like diabetic foot ulcers.

• Radiation injury related to cancer treatment.

Accessibility to these chambers is limited as there are only a small number of them in each country relative to the size of the population.

Whether they are used as standard of care – in other words as part of the accepted medical practice for a particular condition or illness – also varies widely. In many cases it isn’t even standardized at the country level.

Though HBO₂T is a well-established treatment for decompression sickness, it is far more controversial when it comes to NF. In the US it’s estimated that only 1% of patients with a NSTI receive HBO₂T treatment as it is not a recommended by the relevant medical associations ⁽¹⁷⁾. But that doesn’t mean it doesn’t work.

In Europe we’ve taken a different position, and it is used more widely for NF patients as it is seen as a useful addition, if available, to the standard treatment of surgery, antibiotics, and intensive care.

In general, there are two types of HBO₂T chamber. There’s a ‘mono’ unit designed for one patient where you lie on a table that slides into a clear plastic tube-shaped chamber. Or there’s a ‘multi-person’ unit – like the one where I was treated - designed to accommodate a number of seated patients or a single patient lying on a bed or trolley. These can look ‘submarine-like’ or larger chambers can be hard to distinguish from a large hospital room – only the small circular windows give it away.

Oxygen is delivered to the patients in a variety of different ways – in my case my ventilator was flipped over to pure oxygen. But for those not on a ventilator oxygen can be delivered through a mask over the face, or for seated patients, via a lightweight, clear hood that is placed over the head and sealed around the neck.

Image caption: from the outside the hyperbaric chamber looks like a small submarine with a lot of pipes around it. The entrance is at the far end via an airlock that then leads into the main patient chamber. My own picture.

Image caption: around the back side of the chamber is massive control panel, including video surveillance of the inside, that looks like something out of a movie! My own picture.

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HOW DOES HBO₂T WORK?

HBO₂T involves breathing pure oxygen in a pressurized environment – usually two to three times the normal atmospheric pressure that surrounds us every day. That’s equivalent to being fourteen meters or eighteen meters below sea level. In these conditions, your lungs can absorb more oxygen than would be possible breathing pure oxygen at normal air pressure.

Many patients need multiple HBO₂T sessions in the chamber – with the number depending on the specific illness or medical condition. Some conditions, like NF, may be treated in three ninety-minute sessions on three consecutive days – just as I was. Other conditions, such as wounds that have difficulty healing or radiation injuries from cancer treatment, may require as many as forty daily sessions.

Hyperbaric oxygen is a highly potent drug in its own right ⁽¹⁶⁾. Did you know that every cell in the body has an oxygen receptor? Your body’s tissues need an adequate supply of oxygen to function and when tissue is injured, it requires even more oxygen to survive.

Usually, oxygen is transported around the body by red blood cells, but during HBO₂T a greater amount of oxygen can dissolve directly in the blood itself because of the pressure. As a result, the dissolved oxygen in the blood can reach areas of tissue with damaged or constricted blood vessels that are too small for red blood cells to be able to pass through.

Initially it was thought that the treatment effect of HBO₂T in NF was primarily via its impact on the bacteria themselves, but it’s now known that the picture is far more complex. The additional oxygen is not only anti-bacterial – i.e. negatively affecting the bacteria and slowing their spread – but in addition it enhances the efficiency of the antibiotic treatment ⁽¹⁶⁾. On top of that it seems to also have a range of positive immune-modulating effects – in other words it directly affects how your immune system responds to the infection and the toxins released by the bacteria ⁽¹⁵⁾.

DOES HBO₂T REALLY WORK FOR NF?

That’s a question that has been hotly debated for decades and it’s still difficult to be absolutely sure. There has been a lack of well conducted research studies and the results from those that have been done are frequently hard to clearly interpret as there are so many other factors at play that affect the chances of NF patients surviving.

For example, there have been different HBO₂T treatment protocols – in other words when the patient is treated, for how long, and for how many sessions. Add to that there’s always variation in how long the patient has been sick for and how far the infection has progressed – for example it may be a single day and sepsis for one patient and three days and septic shock for another. If they’ve been transported from another hospital to the chamber location that can also affect their chances of survival.

And of course, it doesn’t stop there - patients have other things wrong with them (co-morbidities that I mentioned previously) which also affect how they respond to this type of treatment. Plus, these infections can be anywhere in the body and their scale and location will affect the severity and the bodies’ reaction to them.

After saying all that the data available does suggest that we now probably have the best indication that HBO₂T does indeed help. It seems to reduce the chances of patients dying from NSTIs (of which NF is a subset) in the first 30 days, with a more pronounced effect for the more severely sick patients ⁽¹⁷⁾.

WHAT ARE THE RISKS OF HBO₂T?

Generally, it’s a safe procedure and serious complications are rare. But it does carry some risk. For example, patients can sustain middle ear injuries, including leaking fluid and eardrum rupture, due to changes in pressure.

I have heard mention of at least one hospital in Australia where grommets (tiny ventilation tubes that are put inside the eardrum) are inserted in NF patients’ ears before HBO₂T to reduce the risk of ear injuries. It’s a nice idea, but I would guess it’s not done as standard as the focus is on keeping you alive and treating the infection.

It can also cause temporary near-sightedness – a collapsed lung – and in rare cases seizures as a result of too much oxygen in your central nervous system.

The true risk of these chambers is not really related to its effects on the human body, nor the pressurization of the chamber, but rather comes from the flammability of the pure oxygen. So, safety is very carefully controlled and maintained.

THE REAL DEAL

By some strange twists of fate and more than a few lucky coincidences – and probably a little bit of serendipity – I had the opportunity to visit the hyperbaric chamber in which I was treated in October 2023.

They were running tours of the unit as part of ‘Culture Night’ – an annual event in Copenhagen. Each tour was meant to be for a group of twelve interested people. But in the end it was just a good friend, who happened to be over from the UK, and me. Not only that, but we had the privilege to meet and hear from the professor that runs the entire unit. It felt like it was meant to be.

The whole thing gave me goosebumps. I was fascinated, awe-struck, moved, and acted like an overwhelmingly enthusiastic fangirl. Obviously, I have no memory of the treatments in the chamber – I was in my induced coma – so it was incredibly special for me to see it and meet some of the team that had contributed to my survival.

Image caption: I didn’t intend to include this picture, but in the end I felt that it just had to be done. I wanted you to see that smile. I loved visiting the unit so much. My arms wouldn’t wrap all the way around it, but this was me doing my best to give the chamber a hug to say thank you! The picture was kindly taken by one of the divers on duty that day and yes, I definitely said thank you to the chambers human operators too.

The chamber is run not only by the medical team associated with it, but it is also manned each day by two professional divers who keep the chamber itself functioning. They operate 24/7 and have a one hour ‘scramble’ time at any time of the day or night for urgent (i.e. acute) patients like me. That’s the time it takes for them to be onsite and ready for a patient. I felt like I had been rescued by an underwater team from Top Gun! (See what I mean about the over-enthusiastic fangirl?!)

This chamber is the only one in Denmark that can take intensive care patients. I was lucky the hospital where I was initially admitted was only a relatively short drive away. Other NF patients in more remote areas have to be driven, or in some cases flown by helicopter, to the hospital with the chamber. That transport is a risk for any critically ill patient, another stress they don’t need, another delay to treatment, and sadly some have died on the way.

The chamber itself has eight seats – their design a bit little like those on a plane – that face each other down each side of the chamber. They have up to seven seated patients in there, with a diver to help with their oxygen hoods. Or alternatively they flip the seats up to make space and have a patient, in a bed, lying down the center of the chamber. Entirely alone.

Though they can do it much faster it usually takes ten minutes to take it ‘down’ and pressurize the chamber. It remains under pressure for some ninety minutes. And it then takes fifteen minutes to gradually release the pressure and come back ‘up’. It’s not that it needs to take that long, but as I was told, that’s the most comfortable way to do it.

Once you’ve been connected to the oxygen supply, in whatever form, then a doctor monitors the patient(s) vital signs on monitors on the outside of the chamber. I was surprised there was no doctor or nurse in with me as I’m convinced somebody had told me there was someone. But who knows where I got that from.

The chamber has two sections. A larger patient section that is sealed off from an airlock on one end. If a doctor needs to get to a patient once the chamber has been pressurized, then it takes just 25 seconds to get them into the chamber via that airlock.

I know that the team that run the chamber are very proud that in 2025 they will open a whole new HBO₂T unit with two chambers, each seating twelve people, plus two single person mono units. It will be the largest unit of its type in Europe and has been made possible by a large donation from a foundation.

I am incredibly grateful for their efforts to help save my life and hope they’ll be able to treat many more patients with their new facilities.

COMING SOON

Chapter 23. A Life Changed - next Thursday (23rd October)

If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…

References

Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing a list at the end of Chapter 23 along with a few useful websites.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

necrotizing fasciitis (noun)

: a severe soft tissue infection that is caused by bacteria (such as Group A streptococci or MRSA) and is marked by oedema and necrosis of subcutaneous tissues with involvement of adjacent fascia and by painful red swollen skin over affected areas

Merriam-Webster Dictionary

It’s time to talk science. Not only is NF rare, but it’s hard to generalize as there’s such wide variation in terms of how the illness presents itself and how it progresses, making every patients journey unique. No two cases are the same. A minor case contained quickly, can involve nothing more than a tiny spot on a fingertip. But a more significant case, that takes longer to be correctly diagnosed, can spread quickly through an entire limb or large sections of the body and kill in a matter of hours.

There are a multitude of common misconceptions about NF.

Healthy people don’t get it – they do.

You must have an obvious open wound for the bacteria to get in – you don’t.

These bacteria eat your flesh – close, but no cigar on that one either.

You only get it if you have poor personal hygiene – no, we don’t need to inflict that stigma on NF patients as it’s also not true.

NF is contagious like the flu – also not true.

And sensationalist news headlines and storylines in fictional medical dramas have also contributed to the confusion.

As you read this chapter, please remember that I’m not a medical doctor, but I am educated as a scientist and researcher. This chapter contains my personal interpretation of the scientific research papers and information that I have tracked down on NF over the past couple of years.

I’ve done my best to make this as easy to read and understand as possible and included references to the sources for important data. You’ll also find links to some additional sources of information on NF at the end of Chapter 23.

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WHAT IS NF?

Taken literally ‘necrotizing’ means the death of some sort of tissue in your body and ‘fasciitis’ refers to an inflammation of the fascia - the tissue under our skin that surrounds muscles, nerves, fat, and blood vessels. Though the term NF was only coined in the 1950’s it is believed that the same disease was mentioned more than 2,000 years ago by Hippocrates.

NF is one of a group of life-threatening bacterial infections called necrotizing soft tissue infections (NSTIs) which involve the necrosis of fat under the skin (subcutaneous fat), fascia, or muscle. NF can affect any area of the body from your head to your feet ⁽¹⁾. No part of the body is safe – except maybe your teeth and bones!

NSTIs like NF are the most serious and potentially life-threatening of all skin and soft tissue infections. Without prompt diagnosis and aggressive treatment NF will in most cases ultimately kill ⁽²⁾. It’s estimated that between 15 and 35% of patients will die even if diagnosed and treated ⁽³⁾.

Your chances of survival are diminished the longer it takes to correctly diagnose what’s wrong with you and the longer it takes for them to get you into the operating theatre. That surgery involves a technique called debridement – a process whereby they cut away the dead, damaged and infected tissue to try and stop the infection spreading further.

If you’re already in septic shock and your blood pressure has tanked (as it had in my case) before that first surgery your chances of survival drop even further.

The time people spend in hospital because of NF can range widely - from a couple of days for a milder case up to many months for more serious cases ⁽²⁾. But just like everything in the NF world it also depends on how fit and healthy you were before the infection, how you react to treatment, and a host of other factors. Once again there is no ‘norm’ when it comes to NF.

WHAT CAUSES NF?

NF is the result of an infection by several different kinds of bacteria. In each case it may be caused by a single type of bacteria or may involve multiple types (referred to as poly-microbial).

Bacteria are small single-celled organisms that are not only found all around us in the environment, but that also flourish both on and within our bodies. It’s estimated that our bodies may contain more bacterial cells than human cells ⁽⁴⁾.

In most instances these bacteria live happily on the outside of our bodies, or even in our mouth or throat, and never cause a problem – even the ones that cause horrible infections like NF. Nobody really understands why they suddenly (occasionally) turn deadly.

When things go wrong the bacteria have most frequently entered the human body via some kind of break in the skin. That break may be large and obvious or in some cases it may be almost impossible to see with the naked eye. It could be a cut or a scrape, a graze, a burn, an insect bite, a puncture of some kind (like an injection site or the prick of a thorn on a rose bush), a spot or a boil, or a surgical wound.

They can also enter via any small injury that could have occurred during daily life or even during childbirth. People can also get NF after blunt trauma - an injury that doesn’t even break the skin. And in many cases, like mine, there’s no obvious way that the bacteria found their way into the body. Yet somehow, they did.

The bacteria that most commonly causes NF are group A streptococcus (GAS or ‘Strep A’). In my case it was both Streptococcus pyogenes and also a bacteria from another group called Staphylococcus epidermis.

Image caption: a visual representation of the bacteria known as Streptococcus pyogenes. Credit - Adobe Stock.

GAS contains over a hundred sub-types of bacteria - commonly carried around in our noses, throats, and on our skin with no ill effects. However, they can also cause a range of diseases such as ‘strep throat’ (pharyngitis) and more serious conditions such as scarlet fever, of which there were epidemics in the 19^th and early 20^th century in many European countries that resulted in a large number of deaths ⁽⁵⁾.

Although NF is sometimes referred to as “flesh eating bacteria” or a “flesh-eating disease”, the bacteria(s) that cause it don’t literally chomp away on your flesh. In fact, the bacteria produce toxins that damage the blood supply to the fascia and as a result the tissue dies. However, GAS bacteria do also produce enzymes which also digest or dissolve the tissue.

Once the blood supply to the affected area is damaged it prevents i.v. antibiotics reaching it. So, the only solution to stop the infection spreading further is surgery to cut away the affected tissue – in this case the fascia.

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HOW MANY PEOPLE GET NF?

NF may be classified as ‘rare’ yet it kills an estimated 150,000 people globally each year and leaves thousands with life changing consequences ⁽⁶⁾. The numbers likely underestimate the scale of the problem due to under-reporting and misdiagnosis.

The number of NF cases varies around the world - from as little as 4 cases per million people per year to over 150 cases per million ^(3,7). There is remarkable consistency in rates seen in industrialized countries (such as Australia, UK, USA, Canada, Denmark, Sweden, Netherlands, and Finland) with rates between 20 and 40 cases per million per year ⁽⁵⁾.

Here in Denmark, it has been estimated that there are around 120 cases per year in our little population of just around 6,000,000 people ⁽⁸⁾. Even though we have a well-functioning public health system, this horrible infection will take the lives of 20% of patients in the first few days and up to 30% within a year of the infection ⁽⁸⁾. The number of cases is many times higher in countries with less advanced healthcare and there up to half of the NF patients will die.

NF infections decreased during the COVID-19 pandemic ⁽⁹⁾. However, not only have they rebounded to higher than pre-pandemic levels - in Denmark and other countries such as the US, Canada, UK and France – but data suggests that overall, the number of these infections has been trending upwards for some years ⁽⁸⁾. In addition, there have been periodic spikes in these infections in industrialized countries from the 1980s onwards ⁽⁵⁾.

Recent increases in cases are thought to be related to microbial virulence i.e. the bacteria are getting better at damaging our bodies and they are becoming more resistant to the antibiotics that we have available to treat these infections ⁽³⁾.

Right around the time that I got sick in late 2022 alarm bells started to ring, not only in Denmark, but also in other countries like the UK and US as the result of a dramatic increase in ‘strep A’ cases.

NF hit the news in early March 2023 as there had been 35 deaths in Denmark from December 2022 to February 2023. A major jump in both incidence (the number of people infected) and number of deaths ⁽¹⁰⁾. By July 2023 the number of deaths attributed to NF was already 76 – drastically higher than anything that has been seen previously ⁽¹¹⁾.

ARE SOME PEOPLE MORE AT RISK OF GETTING NF?

The simple answer is yes, but I can’t find any evidence that I was one of them. Fit and healthy people with no known risk factors get it too. I say ‘known’ as there is a suspicion that some may people have a kind of genetic susceptibility to these infections by GAS bacteria. Genetic differences between people could perhaps explain why some of us develop a potentially fatal infection, while others, infected by the same type of bacteria, experience nothing more than an irritating sore throat ⁽¹²⁾.

Around 75% of people who get NF have other health problems (so-called co-morbidities) that may lower their body’s ability to fight infections and so put them at higher risk of NF ⁽⁸⁾. Most frequently that seems to be diabetes and obesity (around 40%), vascular disease (around 30%), and in some instances previously undiagnosed cases of cancer (around 20%) ^(8,13). But one in four NF patients are like me and don’t have any other co-morbidities ⁽⁸⁾.

There is also evidence to suggest that some other diseases, such as influenza, may also affect our bodies in such a way that we are more at risk of infections such as NF ⁽⁵⁾.

HOW DO YOU KNOW IF YOU (OR SOMEONE ELSE) HAVE NF?

As I’ve said, probably too many times by now, every NF patient’s story is unique. That relates not only to which part of the body is affected, but also to how the body reacts to the infection, and the symptoms that they experience as they first become aware that something is wrong with them.

My first symptom was vomiting and an unexplained (but not yet excruciating) pain in my groin – right in that crease where your leg joins your body. Eighteen hours later when the diarrhea started, the pain had become intolerable (even after multiple doses of morphine), and I was showing signs of sepsis. Less than twenty-four hours after my symptoms started my blood pressure was dangerously low, and I was going into septic shock. It was only then that my leg started to swell and go red - hinting at something going on in that area of my body.

Diagnosing NF early and acting quickly is critical yet misdiagnosis is common. Many doctors will never see a NF case so it’s not the first disease that would jump to mind. As you’ve heard my own medical journal outlines the doctors investigative process as they went through various possible causes for my sickness, trying to work out what was wrong with me. They suspected a deep vein thrombosis, then diverticulitis, then kidney stones, back to diverticulitis, and then a fallopian tube infection, before finally thinking that it could be NF.

The problem is simple. The symptoms of NF are frequently non-specific and commonly associated with other diseases. They can develop incredibly quickly. And to add to the confusion symptoms vary widely between patients. I found frequent references to early symptoms being ‘flu-like’ yet I was too busy vomiting to even consider if I felt like that. Certainly not as far as I remember.

Other sources split symptoms into ‘early’ and ‘later’. ‘Early’ symptoms - mostly caused by the toxins released by the bacteria - can include a red, warm, or swollen area of skin that spreads quickly – yep, I had that, but later. They also mention severe pain, including pain beyond the area of the skin that is red, warm, or swollen.

Pain related to necrotizing soft tissue infections is particularly excruciating and unresponsive to pain medication – patients have described it as being ‘far worse’ than being in labor ⁽⁷⁾. I definitely had the pain, and it got worse and worse over the first 20 hours, but initially there was absolutely nothing to see on the surface of the skin.

Last but not least they mention fever – well I had a little fever, but nothing compared to what I’ve experienced with other common minor illnesses.

Then there’s what are categorized as ‘later’ possible symptoms of NF. Ulcers, blisters, or black spots on the skin – nope didn’t have those. Changes in the color of the skin – yep it went red, but nothing else before that first surgery. Pus or oozing from the infected area – nope, another strike.

Dizziness – oh most definitely yes once the septic shock set in and my blood pressure plummeted. Anyone is going to be dizzy when that happens. Fatigue (tiredness) – yep, but I had that the afternoon before it all started at 4am the next morning.

And last, but most definitely not least - diarrhea or nausea. Well that I had in abundance, but only after I’d already been vomiting for twelve plus hours.

So ‘later’ can be ‘earlier’, ‘earlier’ can be ‘later’, and some symptoms may never appear at all. And so many of the symptoms I’ve mentioned can be associated with a simple stomach bug or another common, and most certainly not life threatening, illness. All of that makes it even harder to know that NF is the culprit.

So far, I’ve talked a lot about how fast these infections can progress and how quickly symptoms develop. But results from a Nordic research study suggest that it isn’t the same for everyone even though other studies have claimed it is always quick onset – it’s yet another variation in the NF story ⁽⁷⁾.

The researchers described three speeds of disease onset.

• A ‘short inception’ version where symptoms started and rapidly progressed to life-threatening in a matter of one to two days. That was my experience.

• But they also described a ‘medium inception’ version where symptoms developed over three to seven days.

• And finally, a ‘long inception’ version where symptoms developed over more than seven days, with the person feeling under the weather and perhaps having recurrent throat infections for a month or having flu-like symptoms before things became life threatening.

The study was small, like so many when it comes to NF, so it’s hard to know how much we can trust the data, but it seems possible that NF can develop more slowly. Though the short and medium inception versions were still the most common.

Of course, a diagnosis isn’t made purely based on the physical symptoms that we can see or touch. There are extensive blood tests that will be done looking at markers of infection and inflammation. Though none of them are specific to NF. Blood can also be cultured to find out exactly which bacteria is involved, but that takes time.

Then there’s imaging that can help us see what is going on inside the body. Computed tomography (aka CT) scanners are often readily available (at least in the developed world) and can help doctors diagnose NF. The scans show inflammatory changes, such as accumulation of fluid (oedema), thickening or collection of pus (abscesses) in the fascia, in addition to gas formation.

But these scans are often difficult to read and interpret. I was scanned almost as soon as I got to the hospital and though they could see something was wrong in my abdomen, they really couldn’t be sure what it was that they were actually seeing or what it meant.

When all is said and done NF is frequently only confirmed on the operating table once the doctors have the chance to open the affected area. If it’s NF then they will find foul-smelling ‘dishwater’ pus and grey, friable (breaks easily into smaller pieces) necrotic fascia and a lack of bleeding ⁽³⁾. I’m glad I wasn’t standing in that operating theatre when they opened me up!

COMING SOON

Chapter 22. A Trip to the Deep - next Thursday (16th October)

How is NF treated? What are the options? And why is there a photo of me hugging what looks like a small white submarine contraption that has some kind of space age control panel?

Chapter 23. A Life Changed - landing 23rd October

If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…

References

Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing a list at the end of Chapter 23 along with a few useful websites.

Subscribe now

If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

You can breathe a sigh of relief this week - I’m taking a mini break and not posting a new chapter. You get a pass. A week to recover from some of the hard stuff that I’ve been sharing about my necrotizing fasciitis journey. Though there has been at least a bit more positivity lately. So why is there no chapter this week when there are still more to come? Let me bend your ear and explain.

Since May 1st I’ve been consistently publishing a chapter a week. And last month before we set off on ‘the big UK camper van trip’ I had (I thought) finished draft 5 of the book. All the remaining chapters were in Substack and scheduled to publish.

We started out, back at the very beginning, with the opening Prologue: Life is a Game of Chance.

Then we went into Part I: My Story - covering those first two weeks after the tornado hit i.e. after I got sick. If you haven’t read it yet then start with Chapter 1. Out of Nowhere where it all kicks off on 22nd December 2022. Or catch up on the audio recording of each chapter which are published together here.

And then last week we finished Part II: A Journey Back to Life - stories from the subsequent two years as I fought to recover both mentally and physically. That section starts with Chapter 12. Alien World which is the most read chapter of the book thus far. I wish I knew the magic sauce that has made it so popular.

Today we should have been moving on to Part III: NECK-re-tie-zing FASH-e-i-tis. But sometimes even the best laid plans go awry.

I always envisaged having a specific part of the book dedicated to the science and that was more educational. Of course it also includes more of my own story from the medical perspective. That goliath of a single chapter about NF was way too big to handle. So initially it was split into two posts when I made my last revisions, copied it into Substack, and recorded the voiceovers last month.

But… as of earlier this week my brain kinda exploded. It happens sometimes when my emotions (and all those memories) suddenly get the better of me for a little while. In a weird way these episodes always lead to a breakthrough of some kind. It’s a bit like unblocking a drain. Once again I could see things more clearly. And there was a distinct light bulb moment while I was swimming up and down my beloved pool.

What was that idea? Well, what started originally as a single chapter, that then split into two, morphed again and I’m now convinced that it needs to be split into three chapters. Why? Simply because I think it will be so much easier to absorb. And secondly because there was a personal story in there that was drowning in the other material and which needed to be able to breathe and stand on it’s own.

Below you’ll find out more about what’s ‘coming soon’ and a summary of the upcoming chapters in this part of the book.

Have no fear the science and medical stuff isn’t quite the end. There will be a closing chapter - Epilogue: Hopes & Dreams - that will be published at the end of October.

As always thank you for reading (or listening). I live in hope that this more informative section of the book will perhaps help save a life in the future.

Now I’m off to finish editing those revised chapters and do the voiceovers all over again! Now where’s that duvet gone?

Have a wonderful day,

Jacqui

COMING SOON

Chapter 21. Science & Statistics - next Thursday (9th October)

What is (and isn’t) necrotizing fasciitis? What causes it? How many people get it? What are the risk factors? How can you recognize the symptoms? Aka the bloody hard, but so important bit.

Chapter 22. A Trip to the Deep - landing 16th October

How is NF treated? What are the options? And why is there a photo of me hugging what looks like a small white submarine contraption that has some kind of 1970’s space age control panel?

Chapter 23. A Life Changed - landing 23rd October

If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…

References

Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing the list at the end of Chapter 23 along with a few useful websites.

Subscribe now

If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

Image caption: a totally gratuitous picture of Evie in ‘gimme gimme gimme’ that treat mode! I can hope that’s the look on the faces of my Substack audience when they read about the upcoming new chapters, right?! LOL

As always - thank you for reading or listening!

“…if we are full of enthusiasm for life, then the unknown reveals itself,

and our universe changes direction.”

Paulo Coelho, Eleven Minutes

Much has happened as a result of what I went through. My life is unrecognizable in so many ways to the one I had before I got sick. Some of those changes have been my choice. Some of them haven’t but have turned out to be positive. Some changes have been forced on me and I’m not so enthusiastic about them. And realistically some of the changes would have happened whether I got sick or not – that’s life.

Some of the changes lasted only a short time and I’ve reverted to where I was before. Others have stuck and in some cases evolved further. Some changes actually started before I got sick but were accelerated afterwards.

I appreciate just how fortunate I am that I have been able to embrace change and wasn’t financially forced ‘back’ to things that I did before that no longer work for me – like my job. I’m well aware that many others don’t have that luxury.

I feel as if all of my senses have been turned up five notches. I look at the world through different eyes. I stop and take the time to look around me more frequently. It’s more colorful – and those colors are much more vivid. I notice the birds singing. I feel the breeze on my skin.

My pace of life has changed. My expectations have changed. I no longer feel the need to be rushing forwards. I’m more settled in the here and now. Life is simpler.

I’m not saying that everything is perfect. Who can say that? But I can ‘see’ myself a little more clearly. And I’m quicker to catch myself and change course when anxiety or fear starts to impact on my mood or behavior.

There’s still plenty for me to work on.

LIVING LIGHTER

I used to believe that ‘more’ was always better. More clothes, more shoes, more bags, more sunglasses, more jewelry, more everything. If I liked something then I needed to have it in multiple colors. If I had one of something then having three must be better, right?

I also kept things forever without using them. Not only because I had too many things, but also because I wanted to keep them perfect until the right time. When was that right time? In many instances it would never arrive.

I even bought more than one of something when I liked it so much that I couldn’t bear the thought of it wearing out. I had cupboards full of things that I never used and that I most definitely didn’t need. How many dresses can one person wear?

I can recognize now that I used material things to soothe my soul. My life was centered around things that are probably better referred to as ‘stuff’. Buying stuff gave me fuel. It helped me get through hard times and kept me going.

I would shop to distract my frazzled brain when I was on yet another business trip. Running on pure adrenalin. I shopped to treat myself. To make myself feel better. Trying to put balm on the painful wound of being away from home (and Kim) yet again. And made worse by a whole heap of work stress.

It would help for a few hours, but the effect quickly wore off. And my wardrobe continued to grow with stuff that I simply didn’t need. But I kept doing it because I couldn’t find comfort any other way.

Instead of dealing with the root cause I continued to try and treat the symptoms. The loneliness. The stress. The effects of imposter syndrome. The feelings of never being good enough. The anxiety that one day I’d be found out.

On top of that I was like a squirrel building its stash of nuts. I couldn’t take anything else on top of all that stress. As a result, I was terrified of running out of anything – be it shampoo, conditioner, my preferred deodorant, toothpaste, perfume, etc. So I bought multiples of everything. The outcome was more cupboards full of stuff that would in some cases last me for (many) years. If it didn’t go off first.

But on the other hand, I didn’t keep stuff for the sake of it. I didn’t inherit the sentimental attachment gene that Mum was born with. I don’t feel a duty to keep stuff that people have given me except in rare instances. I don’t feel an attachment to stuff I bought just because it was in a certain place, at a certain time, or perhaps with a certain person.

After I got sick my priorities and values changed. Suddenly I started to see just how much ‘stuff’ I had, and it felt like a weight around my neck dragging me down.

As my recovery progressed my aversion to ‘stuff’ accelerated. Over the past year, I’ve already started the process to live with less. I’ve sold (a lot) of stuff. I’ve donated stuff. I’ve thrown out stuff.

There’s also been a change in the kind of stuff that I need as the nature of my daily life and work has changed. I rarely go to a business meeting that’s face to face. Online meetings are no longer a daily occurrence and even on video I’m only seen from the chest up.

My working (and non-work for that matter) wardrobe for many years focused almost exclusively on black. It was easy to match. Quick for packing as I never had to consider if one thing went with another. Practical. Classic. And typical for me – it meant that I didn’t stand out from the crowd. I could fade into the background.

Nowadays I can’t stand black. It reminds me of the darkness, the delusions, and the terrifying hallucinations. It sucks energy from a room and from me. All black from head-to-toe is a thing of the past. It’s too miserable. Too boring. Too morose.

Now I dress in, what is frequently, a riot of color. Clashing or matching – I don’t care as long as it’s bright. I can stretch myself (maybe) to a black pair of shorts or a pair of leggings, but only if they’re teamed with something colorful.

Image caption: one of my rainbow draws of T-shirts. Not a bit of black in sight!

I don’t care what other people think. They’re wasting their energy if they want to use time judging me. I’m too busy having fun wearing a real-life rainbow. Color and comfort have vanquished expectations.

I only buy things that I really need and if they’re not absolutely essential then they must bring me joy. I have no need to spend money to soothe my battered soul any longer.

I know that I could walk out of this house tomorrow with Kim, Evie, a small rucksack of ‘stuff’ that’s special to me and never look back.

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GOOD VIBRATIONS

How infectious are you? Don’t worry I’m not talking about you passing on some kind of disease. Since I got sick I’ve become so much more sensitive to the energy that we each radiate. Affecting, or perhaps I should say infecting, all those around us and reflecting back to us like a mirror.

When we were going to Dr Handsome’s wound clinic each week I was treated by the same nurse at every appointment. She always had a smile for me. She exuded calm, kind, competent, professionalism to her patients – I’m sure it wasn’t just me. I felt so safe. I trusted her. It made such a difference, not only to be seen by the same person each time and have that continuity of care, but also to bask in the positive, healing energy that she radiated.

I have friends who radiate infectious positive energy when I’m with them and I know I can do the same thing. But I also know people (not friends) who drain every ounce of energy from a room and from everyone in it.

They radiate negativity – resentment, anxiety, distrust, fear, anger, and uncertainty. I now avoid those people like the plague. Whatever they can offer isn’t worth absorbing all that negative energy.

Some years ago, when I was leading business development for a significant customer account, I was running team meetings to prepare our case to win new work (worth many millions of dollars) with that company.

I remember one of my colleagues walking in – as she entered the room she greeted everyone with a smile and said that she was happy that it was time to get ‘a little bit of Jacqui’. Apparently just being with me could boost her enthusiasm, re-energize, and inspire her. It blew me away. More than a decade later I’ll never forget her saying that.

I want to be positively infectious. Infectiously enthusiastic. Infectiously curious. Infectiously energetic. Infectiously empathetic. And maybe infectiously something else wonderful.

HAPPINESS COMES WHEN YOU TRY THE LEAST

When I look back on my life, before I got sick, I can see that I spent a lot of time looking backwards and living in the past. I’d ruminate about things that had happened, and what I’d said. So maybe I wasn’t so much ‘living’ in the past, but in reality constantly wasting valuable time, energy, and head space gratuitously beating myself up.

I drowned myself in guilt, shame, fear, anxiety, and any other negative emotion I could rustle up. Sinking, without trace, any self-confidence I’d managed to build up. Putting up a fake façade and acting as the imposter in my own life that I believed I was.

Looking forwards can be positive, but I took that too far too. I spent even more time thinking that ‘if’ or ‘when’ X happens then I’ll be happy. Cause and effect. When the next promotion happens then I’ll feel successful. When I’ve earned X amount of money then we’ll be secure. When I get past X meeting or X milestone with a customer then I’ll be able to take a break. I was very rarely, if ever, truly happy.

In between spending all that time in my head thinking about the past and the future there was almost no space left for me to be present and to live in the now.

In Bronnie Ware’s fascinating book Top Five Regrets of the Dying she lays out what she learned spending time with people close to the end of their lives. I wish I’d had the courage to live a life true to myself, not the life others expected of me. I wish I hadn’t worked so hard. I wish I’d had the courage to express my feelings. I wish I’d stayed in touch with my friends. I wish I had let myself be happier.

One that really resonated for me – I wish I hadn’t worked so hard. That’s definitely something I could regret. And yet I can’t regret it as it has put us in the financial position that has given me freedom to leave the corporate drudgery, the opportunity to have my own small business, and the head space to write this book.

The other one that stands out for me – I wish I’d let myself be happier. I just couldn’t. I can’t blame anyone but myself. I could regret that I simply couldn’t give myself permission. There was always something else to chase before I could reach that point. Happiness felt like it was for other people. I drove myself so damn hard. I didn’t have time to be happy. It felt like I was being lazy if I allowed myself even a little breathing space.

Since I got sick, I’ve spent a lot of time during my recovery actively ‘trying’ to be happy. Happy that I was alive. Happy I still had all my limbs. Happy I still had Kim. But as I found out if you try to hang on to happiness too tight then you strangle any possibility of actually being happy.

You can’t force it. It just happens. But it’s about not stopping it. Not avoiding it. Happiness comes when you try the least.

“…nothing pollutes and clogs a mind as thoroughly as guilt…”

Matt Haig, A Life Impossible

In the months after I came out of hospital, I was engulfed by huge waves of guilt. Guilt that I’d put my family through such a horrible experience that would scar them forever. Overwhelming, crushing, paralyzing levels of guilt that swamped my mind. Guilt weighed heavy on my shoulders. It created a fog through which I couldn’t navigate.

It took time to work all that through in the therapy sessions with Violet. I don’t think I could have done it alone. I was too lost.

I’ve accepted that it wasn’t my fault that I got sick. I can also accept that I’m not responsible for other people’s feelings and reactions – it’s up to them how they deal, or not, with what they’ve been through.

I no longer blame myself. I know now that it was a random set of chance events that led to me getting sick. I didn’t get sick because of anything I did. I couldn’t help what happened to me and the impact that had on those around me. It was all outside of my control.

These days I regret (almost) nothing. Most days. And I no longer feel any much guilt. Occasionally something creeps up on me, but I catch it quickly and put it back in its box.

I could regret a lot of things. I could wish things had been different. But in almost every case it would mean that my life would have travelled along a different path that wouldn’t have led to me moving to Denmark and meeting Kim. To where I am. To being the person I am now. I wouldn’t change that for the world.

I can’t change my past, but I can accept all the things that have happened to me. I believe I can find contentment by caring a little less and worrying a lot less.

If today were to be my last I could depart with no regrets, no guilt, no shame. Like everyone I have bad days, but now I know that no feeling lasts forever. Let it be and then let it go.

On the days when I glimpse true happiness it feels like sunshine on my skin and a joyful warmth in my stomach. I love my life and embrace every element of the experience that has brought me to where I am today.

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TOMORROW

“The truth is you don’t know what is going to happen tomorrow.

Life is a crazy ride, and nothing is guaranteed.”

Eminem

Like just about everyone else I have a challenge processing the concept of my own mortality. It feels like we’re each immortal and that we’ll live forever. It’s impossible to imagine not being alive.

Yesterday is in the past. Tomorrow could just be a hopeful illusion and might never dawn. There is only today – right now.

My expectation, as I shared earlier, was always I would live to a ripe old age. I based that assumption on solid evidence of the longevity of women in my close family. My grandmothers lived to 91 and 95 years old respectively. Mum is heading for 90. And Aunty Mary is rebelliously energetic (and still auburn haired!) and also in her late 80’s.

But whether we like it or not our time on this earth is finite. Our days are numbered. And we will all die one day – in most cases we just don’t know exactly when.

But how much time do we have left? Check life expectancy data in Denmark and a 55-year-old woman can, on average, expect to live another 30 years to the ripe old age of 85 ⁽¹⁾. That’s similar to the UK average of 87 years ⁽²⁾. And a little more than the US average of 80 years for a white female ⁽³⁾.

So maybe, if I’m lucky, I may have another 30 years. It sounds like a long time, but more than half of my life has been and gone. And what really is another 30 years? It’s only 1,560 weeks. That’s 10,920 days. That’s another 30 Christmases, another 30 summers, and the clock is ticking. But what if it’s only five years or ten years or perhaps only months that you have left? Depending on your health and fitness how much will you be able to get out of those years?

I’ve thought a lot – what if my life had ended back in December 2022? Would I have felt satisfied with the life that I’d lived? Had I accomplished everything I wanted? Had I loved life? What would people have remembered about me?

Data on NF patient survival does seem to suggest a shorter life expectancy compared to the wider population ⁽⁴⁾. But scientific data can only tell us so much. It’s dangerous to see something as fact when it’s a case of probability and not certainty.

That’s true especially when the journey for each NF patient is so unique and there are many other factors such as obesity, diabetes, smoking and heart disease that can complicate the numbers. All you can take from this data is that perhaps there’s a higher likelihood that you won’t make it into the depths of old age. But then again, you might.

I could tell you that I live every day as if it was my last – but I’d be lying. Since I got sick, I better appreciate that my number of tomorrows is not infinite. I recognize that there’s no time to waste. I want to live in the NOW. I’m doing my best to not wish time away – not always successfully!

Sometimes I’ve been aware when I’ve done something for the last time, and had the opportunity to appreciate it. To say a fond farewell or let out a sigh of relief. But frequently I’ve had no idea.

Little things, that you do for the last time, can have a huge impact on your life – something as small as leaving your house. When we left to drive to the ER that night, I didn’t have even an inkling that I might never come home again.

Or what about something bigger like telling someone you love them. I’m sure I told Kim before I went down for that first surgery, but I have no memory of it. And I certainly had no idea that I might never speak to him again if things had gone the other way.

And of course, I had no idea when I slipped into that drug-induced oblivion that it might be the last time that I’d be conscious.

I remember our last ski trip with Dad when he was in his late 70’s. He knew his fitness was waning. His legs looked like they had the strength of some rather over-cooked spaghetti when it came to controlling his skis. Add to that the numerous time that we, and unsuspecting French skiers, had to pick him up after he’d slid to a halt and gently keeled over into the snow.

He used the trip to say goodbye to a sport that he had loved since his early 20’s. We could see just how hard it was for him to say farewell. But he knew in his heart that it was time. And it was wonderful that he got the chance to do that one last trip with Mum, Kim, me, and the kids.

What I didn’t know was that trip would also be the last time I would ski. My back would soon be too painful for me to even entertain the idea of skiing again. And there’s no chance on this earth that I’ll risk skiing with all that beautiful titanium holding my back together these days.

We can never always know when it’s the last time and thinking about it too much may create a whole heap of anxiety.

But I know that perhaps, just perhaps, today might be the last time I’ll experience a certain something in my life.

Image caption: sunrise over one of our favorite parks where we walk Evie in the mornings. The dawn of a new tomorrow.

REFERENCES

1. Danish Government - Statistics Denmark – Life Expectancy Statistics

2. UK Government – Office for National Statistics - Life Expectancy Calculator

3. Data Commons – Demographics - US Life Expectancy

4. Long-term outcomes of patients with necrotizing fasciitis – J Burn Care Res 2010 – Timothy D Light et al.

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