5 Jan-18 Feb 2023: The one year anniversary of starting ‘Life-2.0’ in the UK

Author: Mr A

Twelve months ago on the 2nd of the 2nd 2022 (a hard to forget date, even for me), we stepped off a plane from Sydney and showed our passports at Heathrow Airport. We had one way tickets…a fairly committing thought I can tell you.

Farewell Sydney, we headed ‘up over’! – this was us 12 months ago, in January 2022

Reflecting back, we’ve come so far, even my grand-kids recognise me! Old friendships have been rekindled, and new ones are forming. Toasts have been made to a new life. Oh and we found the house of our dreams in one of the most rural counties in England…where A roads are few and far between, and B roads look a lot like goat tracks…Somerset…we love you. Its been a wild ride, but we’ve settled now and love it.

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Our village is starting to feel like somewhere we belong, and can really craft a new identity in. Everyone here has been so kind and welcoming. We recognise faces in the street , and in turn are recognised. That feels good. I help out in our community-owned shop on a Saturday morning and that’s got me known among some of the regulars, the ones who cross the street when they see me coming (to the other side!).

Our village square – the White Horse pub in front, the village shop is to the right of the pub…a three minute walk from home, so not too bad a commute!
A night out at our local cider barn, Sheppy’s Cider, for their annual Wassail – an ancient West Country cider festival with songs, poetry, dancing and (of course) drinking to wake up the apple trees, therefore ensuring a good harvest! We bumped into friends from the village and had a great time there.

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Catherine has started to bed herself into the community, joining in Pilates at the village hall, producing a flier for the shop, and taking herself off in a small women’s walking group she was invited to join.

Joining Claire and Lizzie from the village for a walk with their two dogs, Amber and Fudge
A little piece of Victorian history in the abandoned mill in Wellington
Claire and Lizzie heading off through the woods
A friendly local drops by to say hello

Catherine has also landed (another) voluntary job as photographer for the Somerset arm of a charity called CPRE (Campaign to Protect Rural England) – you’ll find her photos on their website and Instagram (@cpresomerset). We signed up to help with their litter pick-up initiative, and have used our kits to clean up the lane where we live.

We wonder how much of this falls off the recycling truck!

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Another winter’s day sunrise

Oh but what about the weather you say? Well maybe we are still in the honeymoon period, but the long dark nights of this winter have been an opportunity to get the log burner cranked up, pour ourselves a nice glass of red, and chill out, which in my case means reading and music, and in Catherine’s writing documents for her support group or research papers she is contributing to. Now there are already signs of spring, with snowdrops and daffodils poking their heads out of our lawn and borders. Well …where the squirrels and badgers haven’t dug up the bulbs we carefully buried, little buggers!

Snowdrops galore
Newly bursting crocus in the morning dew
Netted Iris
We try to distract the aforementioned squirrels with peanuts…not sure it has worked though!

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Our village did experience some local flooding, but not on our property which seems very well drained, and we don’t actually feel like we had many days of rain. We have been getting out and about no problem. There were certainly more than a few muddy walks, with some requiring wellies, but we have enjoyed them all. Just need to have the right gear.

A walk from our front door took us up into the foothills of the Blackdowns
Looking back at our village, nestled in the valley. Our house is the one with all the solar panels!
Walking 8km in wellies takes some getting used to!
On another walk we nipped over the border into Devon to catch up with our friends Julie, Russ, Maisie and Beth
Beautiful valley views
The remains of the 11th century Dunkeswell Abbey, where we had a picnic lunch
A stream winds its way through a field…a perfect spot to sail our stick and leaf boats for a race
Beth and Maisie….or is it the other way around…?

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We have also been able to borrow our new neighbours’ dog Ralph, and take him for a romp, and give him back muddy 🙂

Unbridled joy from Ralph the lab

We even walked out over the fields for a Sunday lunch at a local pub last week, that just felt so good. When I look back over January and February, I really have many happy memories created outdoors and in.

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We haven’t had too many visitors, a nice break after the last summer’s rush just after we had moved in, but Catherine’s half brother Alex came and stayed locally and did a great walk with us.

A frosty start on a cloud free morning
Alex brought along his two border terriers, Scout and Raffles
You can see the sun is soon melting the frost in the fields
Heading to the England Coast Walk
Half siblings
“Don’t chase that seagull!”
Break for drinks on an old iron-age burial mound…as you do!
Group shot!

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Then a couple of friends from Australia did an overnight in between family visits. We certainly miss our friends in Australia, but our life needed to move on to adventures new.

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Catherine has been able to spend so much more time with her family, having another weekend in Brighton with her sister and family, then to Hastings, to farewell her grandma.

Claire and Catherine – old friends from Uni days
Alice, Keely and Catherine’s sister, Helen also joined for a night out in Brighton
A timely catch up with friend from Australia, Wendy who happened to be in Sussex visiting family
Sunny Sunday walk in the woods with Helen’s dog, Cocoa
Catherine’s mum, Jenny with her younger sister, Pam, a rare reunion at their mum’s funeral. All guests wore a touch of red as recognition of Jean’s love of the colour, and dancing to Chris de Burgh’s Lady in Red
Catherine stayed a couple of nights with her mum after the funeral
An amble through Hastings’ Old Town
A multitude of door knockers to be found

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We both also have had several trips into London for specialist medical support, which when the trains are running has been dead easy! So not very often…

Catherine’s been exploring London’s art galleries along with her medical appointments
Brighton Station at night after a day out in London

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We are also setting ourselves up to get out riding this spring. We both have new e-bikes, ones that will cope with the potholes, mud and gravel a little better, and that’s just on the main roads! I’m also planning some more multi-day bike tours. Exmoor and Dartmoor beckon. A lot to look forward to.

One of my oldest friends came to stay with his bike, and we took a 75km ride along the Grand Western Canal

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Our home is also taking shape. We’ve lived here nearly 8 months now, and have finished most of the major internal modifications we wanted to do, and kitted ourselves out with furniture, blinds etc. We’ve really enjoyed it, and I’m not sure why its felt different doing it here, but it has. In our last house we landscaped the garden, then stopped. Perhaps deep down we knew it wasn’t going to be our forever home, whereas this one feels like it will be. So next will come the garden, starting with the hard landscaping. We’ve chosen our provider and mapped out a design for a new patio, then it will be the shrubs and adding more privacy with trees. If we have another summer like the last one, it will get a good work out.

So that’s us. Happy in our country bubble, just keeping fingers crossed about our respective health, and enjoying each day we have in this fabulous corner of the country.

Finishing up with a quick shot of the most important member of our household, Princess Tassie, who is loving the multitude of warm sunny spots around the house

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1 October-13 November: The nights draw in as autumn encroaches

Author: Mrs A

Location: Brighton, London and Bradford-on-Tone, UK

The seasons are continuing to delight, with the last few weeks slowly reintroducing us to the sights and smells and sounds of autumn. Having been in Australia for more than two decades, we are often overwhelmed by the nostalgia triggered by the pungent aromas of leaves starting to decay, the freshness of the morning fog which lifts to present another stunning autumn day.

The grass is heavy with dew which often lasts all day long, and early morning forays into the outdoors require warm jackets as we walk behind the lingering mist of our breath. After such a warm summer our apple trees have been almost bent over with the weight of their crop, many given away to passers by at the end of our driveway, many more wrapped and stored for the coming months.

Dewy apples, dandelion clocks, spiderwebs and leaves…autumn has arrived

While the mornings are fresh and cool, the days have been unusually warm, well above average for the time of year. We certainly didn’t expect to be out in t-shirts. Even today, mid November, we have been outside in short sleeves and bare legs, the 20 degrees sunshine not quite what we anticipated for this time of year.

….is snow a thing of the past, we wonder…? Or are we really in for a very cold winter as some predict?

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Early October saw me heading over to East Sussex for a few days with my sister and her family. We had hoped to catch up with our mum for her birthday, but this year seems to be popular for striking train drivers, so we couldn’t make it over.

Instead, we visited a stunning National Trust property, Sheffield Park, where the trees were just starting to change colour. This phenomenon is something we have missed being in Australia, where you have to hunt down those European trees planted by settlers missing their seasonal changes.

Helen, Cocoa and I making the most of a sunny afternoon
Elliot gazing in wonder at the magnificent house across the lake, while Helen, Stu Isabel and Cocoa smile for a family photo

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As the past month has progressed, the mornings have got darker and we have often woken to our views shrouded in a thick fog, blocking our views and creating a view that Tassie can’t wait to get out in….and equally as fast can’t wait to get back inside from!

Our oak tree on two different mornings – you never know what you’re going to open the curtains to!

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Mid October, we had a night back in our lovely cottage in Widworthy, Devon. We were there to attend our friend Dan’s 50th birthday party in Honiton. It was a fun night, and Tassie enjoyed re-exploring her old haunt, while we had fun with old and new friends.

Giggles with Julie and Karen at Dan’s birthday party
Little miss adaptable Tassie, always up for a new adventure

Our friends Julie and Russ have landed themselves a new job looking after the holiday lets and management of the magnificent 16th century manor house, Widworthy Barton. We were very fortunate that Julie was able to offer us a tour. What a beautiful house, stunningly decorated and so many original features including a minstrel’s gallery, and library. There are some newer features too, including tennis courts and a swimming pool.

Apparently a first edition Winnie the Pooh somewhere in this library….or so legend has it…

All yours for about £4,600 a week – in its favour it does sleep up to 14 people, so just £100 a night when split between 7 couples…it would be a wonderful location for a holiday.

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I have been invited to join a walking group in our village, joining a group of ladies who also go to the pilates class we attend.

The first walk I joined them on took us along the remains of the now disappearing Grand Western Canal. This canal was meant to stretch between Exeter in Devon through to the city of Bristol, but was never finished. In total they completed 18km of canal between Tiverton and Taunton, and this section was in use during the 1800s, making use of a boat lift to shift barges between different levels of canal. A group known as the Friends of the Grand Western Canal have proposed restoring this waterway to its former glory…there is no evidence of anything happening yet.

No boats travelling up here today
Nynehead Boat Lift – considered to be one of the best preserved examples of a boat lift in the UK

Our walk also took us to the ruins of a huge Victorian textile mill, Tonedale, the largest in the south-west of England. Apparently much of the khaki material created for use in the First World War was made here, and woollen material used for coats known as serge. The building is listed and supported with grants from Historic England, and in recent years has been purchased by developers. There are plans to turn this complex into accommodation, artisan businesses, a cafe and museum.

Tonedale Mill
Stormy skies highlighted by the sunshine across the fields

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The Blackdown Hills are very accessible from home, and just a 12 minute drive saw us starting another circuit – I went first with the walking group, and while fresh in my memory, took Mark along for a hike as well. The circuit took us across fields, down lanes, across bridleways and through woodland, the views becoming ever more spectacular, the higher we climbed.

A herd of lovely ladies watch on in interest as we pass
Everyone has a dog it seems, sometimes more than one! Ranging in size from Fudge on the far left to Buddy on the far right with a pair of Ambers and a Hazel in the middle
A bit of a stream crossing to navigate – this is where walking in wellies is a good idea
Endless amazing views as we walk the 9km circuit
Hedgerows perfectly trimmed
Mr A

Beautiful shadows and multiple shades of green
Mr A admiring this view….
Perfectly ploughed fields and views stretching to the horizon
Even lucky enough to see a few wild Roe Deer on our walk

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Another weekend we decided to hike up to Culmstock Beacon. Just a quarter of an hour’s drive away from home, we started our hike from the village of Culmstock, hiking up into the Blackdown Hills over styles and across hilly fields.

Mr and Mrs A
After a bit of rain there is a great deal of mud in parts
Matching cow and leaves
Am I cute or what?
We are yet to visit this local landmark, the Wellington Monument
Dark trunks in contrast to the bright lime leaves
Autumn leaves
Mushrooms or toadstools?
Appreciating the level land on top of the hill
An eagle eye view of the surrounding country
There has been a beacon here since the mid 1500s, with this beehive-like structure designed to house a wooden beacon which lifted up through a hole in the roof and then set on fire. It is part of a chain of beacons which would have been lit to warn locals about an approaching enemy (eg the Spanish Armada)
Stormy skies approaching…fortunately we always carry waterproofs just in case!

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Mark has purchased his Christmas present early – a record deck. Of course that was just the first purchase, because then he required records to play on it. He’s been busy reliving his teenage record collection in second hand stores in Taunton and Bristol, with a few record-shape Amazon deliveries winging their way to our front door too. I think he’s done for a little while…!

New record deck…and a rare find first-pressing of a Black Sabbath album in Taunton

Tassie remains very settled, enjoying her multiple walks around the grounds and moving between sunny spots in the house throughout the day. We still look at her in wonder of the huge journey she has undertaken from Australia, taken in her feline stride.

Cuddles time with Tas

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Finishing off with a few shots from walks around our village, across the fields and around the lanes. The sun sets around 5pm now, so we are often out and about to see and admire it. Still loving our new life in Somerset.

Along the River Tone
Sunset powerlines
Looking towards our house in the distance
Five minutes walk from home

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5-31 March: Spring brings precious family time, bad news and (tentatively) most excellent news

Author: Mrs A

Location: Kingston St Mary, Somerset, Milton Keynes, Buckinghamshire and Brighton, East Sussex, UK

The past four weeks have whizzed by, with both of us spending time with our families, which has been an absolute pleasure after so long apart. We have started our time here as we mean to go on! But I am going to start with the excellent news.

Last Saturday lunchtime we went to see a house in the village of Bradford-on-Tone. It’s about a 20 minute drive from where we are currently living, and a small village of about 600 residents. The agent had hand picked us for the first viewing after reading our buyer’s profile, describing our desire for a house with plenty of light, preferably in a village community but not a housing estate. We asked for something that had a high graded EPC (Energy Performance Certificate) which would mean cheaper running costs, and a newer or recently renovated house not requiring too much work. It ticked so many boxes. We made an offer and it was accepted the same day.

Offer accepted…now let’s wait and see!

Now, while this is exciting and we celebrated with a bottle of Prosecco at our local pub, this deal’s not done until the fat lady sings. In the UK, the sales process is excruciatingly slow, with the average house exchange completed in four months. An accepted offer also doesn’t mean a certain sale, either – the seller can change their mind at any time, and there is always the risk of another buyer swanning in and offering more. It’s a horrible process!

I will refrain from sharing more details of this property until we feel more secure.

Lunch at The White Horse, potentially our new local in Bradford-on-Tone – HUGE portions!
The River Tone – there’s a long distance walk – The West Deane Way, which follows this river for part of its 45 mile circular route

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Our last post was written just prior to a long awaited weekend to celebrate my birthday and that of our friend Karen (‘surrogate sister’ and long suffering childhood friend!) who also joined us with her family. We had organised everything at the end of last year, booking two lodges at Mill Meadow to house everyone for a weekend of festivities. So much could have gone wrong, and yet nothing did – everyone stayed healthy and all went as planned. Fabulous cakes were provided by a local baker, Wizz, and we had a party in the skittle alley at our local pub, The Swan.

L-R from top: Catherine and Jenny (mum), Catherine’s cake, fur nephew, Cocoa, Phil cooking up a breakfast storm, Helen (sister #1) trying out her bowling skills at the skittle alley, Hayley (daughter #2) enjoying the hot tub, Ian not in fancy dress (cousin), Catherine and mum in Aussie fancy-dress, and Catherine and Elle (sister #2)
A spring hike with some of the family members – L-R – William (nephew #3), John with Iris (niece #2), Elle, Alex (brother), Edward (nephew #2), Catherine with Elliot (nephew #1), Helen, Stu with Isabel (niece #1)
L-R from top: Helen and Isabel enjoying the hot tub, the three witches, Zoe in Aussie fancy-dress, the Fields around us, CAKE!, Elliot (nephew #1), Catherine, Dan, surrogate sister Karen, and Mr A, Iris (niece #2) in yellow, and finally Isabel (niece #1) in koala fancy dress
Catherine, Karen and Jenny on Cothelstone Hill with an icy wind

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The following weekend, Mr A drove Truffy (our Hymer motorhome) up to Milton Keynes to spend some time with his daughters and grandchildren, the spring temperatures rising and bringing us blue skies and sunshine.

More lovely spring weather in Milton Keynes for some dad and grandpa time. James (grandson #3) seems to have mastered Connect-Four!
Mr A, Zoe (daughter #1) and Hayley (daughter #2)

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House hunting has been an all encompassing activity during the week, with daily pouring over the property apps and visiting the agents in person in the hope we might make an impression and be alerted to a suitable property ahead of the pack. It had begun to get us down, the uncertainty of our future living circumstance with an ever approaching deadline for moving out of our holiday accomodation, something that hasn’t gone away, despite our accepted offer on a property.

When there were no properties to visit, we broke up our weeks with visits to local regions. WWT Steart Marshes were our destination on one occasion. A unique scenery of wetlands stretching out towards the Bridgewater Bay and the River Severn Esturary.

Who’s the most beautiful Mute Swan of all…?
A Kestrel hovers over the marshland, having spotted lunch
Buzzard are a fairly common sight around here, this one kindly flying past within shot of my camera
A rather handsome Eurasian Moorhen
Spotting and photographing equipment

On another occasion we headed to the city of Wells via an RSPB wetland site, Ham Wall, near Glastonbury. It was a really magical place. The birdlife was prolific, with tame robins eating out of our hands, Grey Herons, Teal, Marsh Harriers, and a special visit from a Red Kite. This particular fly-by felt like a spiritual portent – Mark’s father was part of the RSPB team in 1989 that was responsible for the reintroduction of Red Kites to the UK. It was as though Clem Anderson was visiting to register his approval.

A magnificent Red Kite
A Marsh Harrier circles over the wetlands
Super-friendly Robins
Who are you calling a Great Tit?
Song-Thrush

Wells is a historical city with a magnificent cathedral and a palace surrounded by a moat. It is often referred to as the smallest cathedral city in the UK…this is in fact wrong (points to anyone who can name the actual smallest city). We had an explore before returning home – plenty to see there on a future visit.

Mr A couldn’t resist the FlapJackery in Wells ?

Another bird trip took us to RSPB Swell Woods – home to many little woodland birds, and the exciting location of my first decent photo of a Great Spotted Woodpecker!

Great Spotted Woodpecker
Left from top: Coal Tit, Wren, Tree Creeper Right from top: Chaffinch, Great Tit, Robin and Blue Tit

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I had an appointment with my specialist in London for my airway stenosis. I didn’t expect it to go well – my regular peak-flow tracking has shown an overall decline, pretty much since we sold our house in August last year. My appointment confirmed this – my airway was too closed up to treat without significant risk in day surgery, so they booked me in for an operation in 12 days time. At least I will be breathing easy again – it is the first operating theatre visit in nearly three years, which is a good thing.

The last time I was truly breathing well was before the sale of our house in Australia…a perfect example of how stress impacts health

I caught the train down to Brighton to drown my sorrows and put this news behind me with some time with my sister, Helen and her family. Mum also joined us for a pizza lunch and sunny afternoon at Brighton seafront to celebrate Mother’s Day a week early.

A stunning, sunny spring weekend in Brighton with much healing laughter
A giant pizza and family lunch
“Goodbye Auntie Catherine”

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Back in Somerset, last week we had a visit from friend Barny and his young working cocker spaniel, Bertie. We did a couple of good walks and of course a couple of visits to our local pub.

Drinks at The Swan at Kingston – chefs Mickey Finn and Fran – and finally, lamb number 9 (one of two!) who wouldn’t let me go and had to be picked up to stop it from being terrorised by Bertie-dog!
Pure joy = a cocker spaniel with a ball in a field

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It has been an amazing month – writing it all down reminds us of how much we have seen and done. While the white-knuckle ride of emotions associated with searching for a home to live in has been somewhat exhausting, it has thankfully been counteracted with quality time and great memories made with our families.

April will bring new adventures and challenges, with plans already including cat-sitting a pair of kittens, my operation, more time with family, moving out of our holiday-house and into an Airbnb, and one long awaited event we are quite anxious about – the arrival of Princess Tassie the adventure cat, from Australia. The emotional turbulence is not over just yet!

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25-31 October: A “wedding week” in Brighton and an imminent return to Australia in motion

Author: Mr A

Location: Brighton, East Sussex, UK

Part of our mental health discipline in these trying times is to keep thinking of the benefits the pandemic has brought us. There have many, but one of the greatest was to be able to share in Catherine’s sister‘s wedding here in Brighton this week.

A pre wedding Sunday afternoon stroll after lunch up at Hollingbury Hill Fort
Uncle Mark explaining to Isabel how many years ago the Iron Age people built this fort
Queen of the golf course
Chasing around with Auntie Catherine
The sun reemerging from behind a black cloud, the rain heading out to sea for now

Helen and Stuart have been together a while, evidenced by having two lovely children Elliott (9) and Isabel (6), and five years before them of child free togetherness in the south coast seaside town of Brighton. They decided, for a number of reasons back in the summer this year, that autumn would be the right time to tie the knot. One of those reasons was undoubtedly that Catherine would be around to share the experience. Geographical separation over the last 22 years has not weakened the strong sister-bond. For me as well, Helen and Stu have been like family over those years since they first got together. Helen stayed with us when she came to Australia, and came to our wedding back in 2002. Stuart has shared many a decent glass of red over the years, and fed me some of the most memorable, relaxed, fun meals we have had on our visits back.

To see them share their continuing commitment to each other, with a close group of friends and family (only 15 allowed), that was just priceless for both of us. How they pulled off such a fabulous event given the constantly changing constraints, was a marvel! But they did. The week was full of hair and nail appts for the girls, and perhaps Stuart (I’m not sure :)), and time at their place just hanging out with the kids, and eating and eating and eating! Brighton has some fabulous places to buy deli food from, and I think Stuart must know them all! OK so the weather wasn’t always conducive to being out and about, but we wrapped up and headed out on walks with them, several times clocking up many miles along Brighton’s wet and windy seafront walking in and out from our caravan park.

Fresh from a haircut, Helen sports a stunning bouncy blow dry
Autumn colours in the bride’s and bridesmaids’ bouquets
Arriving at the registry office, Isabel and Elliot almost upstaging their parents at the ceremony in their gorgeous outfits

The ceremony itself went without a hitch, in a gorgeous room at the local town hall. Bio-degradable confetti was thrown (against council regulations), and we all felt rebellious. The showers came and went, but Stuart’s sister, who just happens to be an awesome wedding photographer, captured some magic moments.

Catherine, mum Jenny, and half sister Elle sit together, representing Helen’s side of the guest quota
Elliot managed to smuggle in another guest, rabbit, who had not been on the invite list!
A gorgeous ceremony
Helen signing the registry
The happy couple emerge, jubilant, to a huge round of applause from well wishers outside
Jenny battles the strong wind to sprinkle the happy couple with petal confetti
Miss Isabel giggling at the fun
Half-sister Elle, Catherine, the bride Helen, mum Jenny and half-brother Alex

The long lunch that followed (at The Ivy in The Lanes) was one of the best dining experiences we have had over this side of the world. The food, the wine, the company, the context of the room itself and its decor, the staff whose smiles refused to be hidden by their masks. This was a special time, and has been filed carefully in our memories.

Terrible table selfies and lots of laughter
John, Elle and Catherine
The ladies’ toilets were rather special
The beautiful bride and bridesmaid
Miss Isabel

Feeling a little dusty the day after the wedding, we treated Helen, Stu and the kids to pizza at Fatto a Mano restaurant in Hove. As always they were great company and the food helped clear the head a little, as did the rather blowy and showery walk back to our campsite along the seafront!

A post wedding day pizza in nearby Hove
Day one of wedded bliss – Mr and Mrs Carter
Looking stormy over the West Pier ruins
More stormy weather approaching behind us
The bright lights of Brighton Palace Pier cheer up a rather grey looking scene

Saying goodbye to all our friends and family here is especially difficult this time as we prepare to leave, because we have no clue when we will be back, with the travel restrictions in place and soaring airfare costs.

We have made it onto one of the “specially facilitated” flights back to Australia. Qantas has entered into an agreement with the Australian government to run a number of these flights from London, New Delhi and J’burg. At $2,165 a head for a one way ticket, they are reasonably priced in these times of expensive airfares, and that‘s one way. A requirement for a pre-flight COVID-19 test 48hrs before our flight means that will be our first milestone to clear next Thursday in London, before hopefully boarding the flight on Saturday morning. Then its off to a hot and steamy Darwin non-stop, just under 17 hrs, with limited in-flight food and no entertainment provided.

A happy morning when we received this email!

Why Darwin when we live in Sydney? Well that‘s part of the deal with these flights. You have to complete `14 days quarantine at a special facility just outside the city. Landing at the RAAF section of the airport, and then channelled through a special process involving another test, special briefings, and then a bus ride to our quarantine centre at a place called Howard Springs, 30km south of the city. It was built in 2012 to house workers from a Japanese mining company, now serves as home for at least 14 days to incoming Australians on these special flights, as well as some domestic flights where passengers are also forced to quarantine. Australia is serious about controlling its borders.

At $2,500 a head, its another cost we hadn’t expected, plus our flight back to Sydney once we are clear, but still cheaper than the $19,500 business class airfare from Singapore Airlines that was our other option! There are economy fares around, but the tales of people being continuously bumped off them, as Australia is capping its number of incoming international passengers, put us off that uncertain route, and the ones we could find to book were not leaving for weeks. Plus we would then have been in hotel quarantine, possibly in a room without any access to fresh air. At Howard Springs we get to have some outdoor time each day. We would both struggle with being locked up in an airless hotel room.

Catherine’s airway disease means she is classed as vulnerable, so we qualified for the flight, thanks to the Australian Department of Foreign Affairs and Trade, who are administering the invites. So flying on a tightly controlled route from a health perspective made sense. The last flight from London arrived with zero cases, the ones from New Delhi only four, so we are going into a pretty low risk environment we think. However, England is going into lockdown next week, so how this will affect all these plans we have no clue!

On day 12 of quarantine we are to be tested again, and if we’re clear, then get permission to jump on the flight we have set up to Sydney on Sunday the 22nd. There may well be a glass or two of something alcoholic consumed that night and some decent food. The Howard Springs facility is dry, serves all meals in take away containers with plastic cutlery, like a two week long airplane flight! So a hug with our close friends Jenny and David, and hours of cuddling our fur child Tassie, will be the milestone we look forward to over the next three weeks.

It‘s sure going to be an interesting few weeks for many people in the UK and Europe as case numbers soar, and the US as civil unrest looks to raise its head whichever way their vote goes. Australia seems a safe haven. Our options here in the UK and Europe are limited for the winter as campsites will no doubt close, travel restrictions tighten, and the weather makes living in a motorhome though the winter increasingly impractical. So it‘s Australia we hope to make it back to. Keep your fingers crossed for us please, and maybe see you down under soon!

Happy Halloween!

15-23 March: Modifying Truffy, getting evicted and finding a new home

Author: Mr A

Location: Doncaster (Yorkshire), Harby (Nottinghamshire), Kettering (Northamptonshire), Brighton (East Sussex), West Bagborough (Somerset), UK

In my dotage, which is looming ever closer, I hope to be able to say that we, and all those we hold dear, survived these scary times, came out the other end having learned new things about what’s important to us and the planet we call home.

It has been a roller coaster week of intense highs and lows. It started with me heading north to Doncaster for a couple of days to get some major modifications to Truffy. We had decided to get a levelling system fitted as every time we set up camp we have to drive him up on massive ramps. Not always in good weather, and not always leading to good marital relations as Catherine tries to direct me up the various levels without driving over the top of them. Yes I did that once. So we now have four hydraulic legs that lower down with the press of a button and get the Truff all nicely level.

To be frank, Doncaster isn’t somewhere I’m going to be rushing back to, but I did discover an awesome cycle route just outside of town that none of the web sites I searched even mentioned.

The Trans Penine Trail, running coast to coast is one of the great cycling infrastructure assets of the UK with over 200 miles of signed path on mostly dedicated cycle way or quiet roads. What a fabulous opportunity to “socially distance” myself and ride its quiet paths.

The Trans Pennine Trail
A beautiful spring day to be out cycling
The Stainforth and Keadby canal – connects the River Donn and River Trent

I would prefer the term “physically distance” ourselves as being more precise. We need to continue to socialise, to support each other and keep ourselves mentally healthy, just not by physical socialising.

I then rejoined Catherine in my old home town stomping ground of Kettering, and once again experienced the generosity and thoughtfulness of our friends, with whom we had a cracking evening filled with gin, red wine, Indian takeaway and much laughter, then a hangover breakfast and a escorted shopping trip to try and stock up an empty Truffy larder.

Cheers! Lots of laughs…

We had booked on to a campsite in Brighton for a week. By now we had accepted that camp sites were likely to close and we would have to find a rental place. That proved harder than we thought with landlords returning to their holiday homes, and press articles appearing from rural communities saying they didn’t want incoming travellers escaping the cities and overloading their health services. Fair enough, but where were people like us with their homes rented out going to go? Some friends near Lincoln had offered co-habitation in their fabulous place, but we didn’t know how long this would have to be for so felt we really needed our own front door and not have to impose on friends in their sanctuary.

Brighton Pier only available for careful takeaway
Blue skies hide the chilly north-easterly wind that was blowing

Catherine managed a couple of brief catch ups with her sister and family, and also a friend from Sydney who had travelled over for her mum’s 100th birthday, only to be told on landing that the care home she was in had just been placed on lockdown.

Catherine and Wendy maintaining distance while catching up on news

There are so many stories like this around the world are making this a hugely stressful time as we try and adjust our lives and expectations.

Sisters can’t be torn apart
A couple of elves in the park

Then on the second day into our week‘s booking we were told we had to vacate the camp as they were closing, with immediate effect. We were stunned. We had nowhere to go. There had been some bad press about people streaming down to the coast to caravan parks and I think the government put pressure on the parks to close. But with zero notice we were in a difficult position.

After some calling around we found another site that was still open, booked that and were ready to head off when they rang and said they had changed their mind. Then we found another that was still open. We called in on Catherine‘s mum in Hastings, to pick up some parcels and deliver Mother’s Day flowers and card. These were passed across the threshold of her door, no hugs or kisses today. So hard for all of us. But we must behave responsibly.

It was a stressful night, made suddenly better by another kind gesture from friends who offered us a spot on the driveway of their new house. Power and water and electric hook up. We got up in the morning all ready to head to Essex.

The very much non-glamorous side of Truffy travels – heading out to the shower block in 2°C !

Then another offer came through from friends we made way back over 15 years ago in Sydney. They had a cottage available in Somerset. The property we were offered was a 16th century farmhouse set in an area of outstanding natural beauty in the Quantock Hills. We were both on the edge of tears with relief. Our own front door, in an area we had wanted to visit anyway.

Off we shot down some very quiet motorways and arrived as the late afternoon sun set over the hills. We sipped a gin, held hands, and gave thanks to the kindness of friends.

13-15 September: Royal palaces and sunshine

Author: Mrs A

Location: Brighton and London, UK

Sunshine is never guaranteed in the UK, particularly during September, but we were very fortunate to get a glorious weekend served up. Despite having a bad reputation, Friday the 13th dawned bright and sunny and mum and I left Hastings and drove over to my sister’s home in Brighton.

After a little shopping, mum and I met Helen and niece Isabel for lunch in a local pizza restaurant, Fatto A Mano. Named as one of The Guardian’s top independent pizza restaurants in 2015, they are well known in Brighton and Hove for their light pizza bases and delicious toppings. They even had three choices of vegan pizza meaning I could join in with a flavoursome meal!

Where has Miss Isabel learned to pose?
Three generations of ladies who lunch
Scooting and strolling through North Laine
Mum and I head home via the Brighton Pavillion

We had a lovely afternoon around the shops in Brighton and North Laine, after which mum drove back to Hastings.

Saturday morning, Helen and I said goodbye to Stu and the kids and went up to Brighton Station to catch a train to London for a sister escape. Helen and Stu both work so hard with their children and work life, and H really deserved a break. For me, selfishly perhaps, I adore my sister’s company and over the past two decades have not enjoyed it enough, and so wanted just one night for the two of us to chat, enjoy and just be together.

Our intention was to whizz up to London, leave our luggage at our hotel and explore. Unfortunately the trains had other ideas, and what should have been an hour journey took around three hours and three trains! It seems Friday the 13th’s reputation has transferred to Saturday the 14th.

Finally we did make it to our hotel near Earl’s Court, and St James’s Park was our next destination. We have memories of visiting this area as children on day trips with our mum, feeding the sparrows with pots of seed bought from little old men, now long gone. The weather was spectacular, and perfect for walking through the gardens.

Happy just to be together
Beautiful gardens

St James’s Park is the oldest of the royal parks and is surrounded by three palaces – Buckingham Palace is the most famous, St James’s Palace, built for Henry the 8th in 1532, and the Palace of Westminster (dating back to the 11th century) – better known these days as the Houses of Parliament (which has been held there since the 1300s).

Looking towards Westminster with Churchill’s underground war rooms on the right hand side

Horse Guard’s Parade remains part of the park, created during the 18th century, and too are the golden ornate gateways dedicated to the dominions – Australia, South Africa and Canada.

The left Australia gate post has a cherub with a sheep
The other Australia gatepost has a kangaroo with the cherub
Outside Buckingham Palace is the Queen Victoria Memorial, which celebrates the days of the British Empire. The memorial includes the marble statue of Victoria and the glittering figures of Victory, Courage and Constancy.
Buckingham Palace – the Royal Standard flag is raised meaning the Queen is home (if she’s away it would be the Union Jack). Helen came here to the annual garden party a few years ago, invited as part of the charity she worked for at the time. We didn’t get an invite this afternoon though.
The Royal Standard used in England, Northern Ireland, Wales, and in overseas territories
Cheesy sister photo in front of the palace

From here, we crossed into the cool shadiness of Green Park and made our way over to the Canada Memorial for a sit down, watching as wood pigeons flew down for a drink.

Green Park
Unveiled in 1994, the Canada Memorial recognises the one million Canadians who fought alongside the British during the two world wars. It’s a lovely peaceful spot to sit and relax a moment in the shade, the water gently rippling over the granite and across brass maple leaves.

After all this exploring we went back to the hotel for showers and to get ready for our night out.

We had an early dinner at a delicious Thai restaurant near Earl’s Court Station (Siam Secret – definitely recommend for authentic Thai food) before catching the train to Piccadilly Circus and the Princes Theatre for our evening’s entertainment – The Book of Mormon. This show is one of the most successful musicals of all time, and the 14th longest running show on Broadway (as of July this year).

Outside the theatre
In the bar, waiting to go to our seats
Brilliant seats with a fabulous view of the stage
Enjoying our night out already

We really enjoyed the show, packed full of laughter. Maybe don’t go along if you’re sensitive to the odd swear word, a Mormon or not open to thinking slightly differently about religion (apparently 10-15 people walk out of the show each night)) but for entertainment value it was fabulous.

We exited the show on an absolute high, wishing the show could have continued for another hour, and strolled around to Leicester Square, Chinatown and Covent Garden, just people watching and lapping up the atmosphere of a Saturday night in London.

Who knew there was a whole shop dedicated to M&Ms? Helen persuaded me to go in and I had to do some shopping
Strolling through Chinatown, enjoying the buzz
The streets that never sleep

Sunday: Our night in the hotel included breakfast, so we feasted to get our money’s worth before rolling out of the door on Sunday morning for a stroll. We had no plan as to where to go, but explored the streets of Earls Court and Kensington, deciding it would be an area that would suit us quite nicely, if anyone out there would be willing to donate us a house or apartment!

We wound our way through the streets to Kensington Palace, which has been in the royal family since the 17th century. Presently it is the residence of the Duke and Duchess of Cambridge (Prince William and Catherine) among others, but like the Queen, they didn’t invite us in.

The royal apartments are in the background behind Helen’s head
24 May 2019 was the celebration of 200 years since the birth of Queen Victoria – she spent her formative years at Kensington Palace
Wandering around Kensington Palace gardens, free to the public
Beautiful formal gardens, being prepared for the next plantings
Views across the gardens to the Round Pond
Many swans on the Round Pond

We enjoyed strolling through Kensington Gardens and through into Hyde Park, finding ice creams on our way through. We stopped at the Princess Diana memorial fountain, a circular water feature made from Cornish granite, full of children playing and visitors cooling their feet. We of course had to join in.

Refreshing for the toes
A fine way to spend half an hour – I think Princess Diana would be very pleased!
The Serpentine Bridge, built in 1730, marks the boundary between Hyde Park and Kensington Gardens
Crossing the Serpentine Bridge
The boating lake is popular on this warm Sunday afternoon

As our afternoon led to a close we were sad to head back to the hotel and collect our luggage, and make our way in separate directions home.

Helen attempted to take time-travel back home, but sadly the door was locked
(If you don’t understand, Google ‘Dr Who?’ & ‘Tardis’)

It was a fantastic weekend – so special spending time with my mum and sister, every moment and memory treasured. Helen headed back to Brighton, while I travelled north to meet up with Mark and his daughters in Milton Keynes.

6-9 September: A busy birthday weekend in Brighton and London

Author: Mrs A

Location: Brighton, East Sussex, and London, UK

Friday: We farewelled mainland Europe and after a four hour cruise from Dieppe to Newhaven were soon pulling up at the campground in Brighton, now very familiar being our third visit in Truffy.

Boarding the ferry at Dieppe

My sister Helen soon arrived with our niece and nephew for a visit, and presents were exchanged – a birthday gift for Elliot and a little something from Slovenia for Isabel. Our next stop was one of the many fish and chip shops along Brighton seafront, where a feast was purchased and taken to the Hilton Hotel. There we joined Mark’s daughter Hayley and her children Luke and James who’d travelled down to join us for the weekend. We munched on our goodies before helping put the kids to bed for the night.

Mr A excited to see Hayley as well as the ‘proper’ chip shop menu! ‘Mmm, curry sauce, pickled eggs, pickled gherkin, mushy peas….’
Sun’s going down on Friday
View from Hayley’s room
Brighton Pier looking vibrant on our walk back to camp

Mark and I strolled the 4km back to camp along the seafront, welcoming the chance to walk off the fish and chips and stretch our legs after a big day of travelling. We’ve gone back an hour on our journey across the English Channel too, and are feeling the jet lag!

Saturday morning we were off back to catch up with the family in Brighton.

Granddad Mark entertaining the boys

Mark joined Hayley, Luke and James on an open top bus tour, then I met them at Brighton Pier, soon to be joined by Helen, her fiancé Stu, and their kids. Officially I think we worked out these are step-second-cousins, but we decided to just call them cousins. They all got along just fine given it’s their first visit. We hope it isn’t the last.

Mr 8 is joined by Miss 5, Mr 7 and Mr 3 on the kids’ table
The English Channel looks almost tempting when the sun comes out

We had a lovely morning with them, and in the afternoon Mr A and I both had hair cuts to make ourselves more presentable!

Both a little more trimmed and tidy!

All this family action has not only been to welcome us back to old Blighty, but also to help celebrate Mr A’s birthday. We concluded our Saturday with a celebratory delicious curry and some fine wine with Helen and Stu.

Celebrating Mr A entering his 64th year (Helen had run out of number 3s!)

Sunday morning dawned clear and crisp, and Mr A was soon back on another open top bus with Hayley and the kids doing another tour of Brighton. I joined them later for a spot of lunch on the beach.

A fresh Autumnal morning near the old West Pier
Ice creams on the beach

It was great seeing the boys enjoying their time on the seafront. Having grown up near the beach just along the coast, I was able to share all the games and adventures Helen and I had enjoyed in our childhood, and soon had Luke and James hunting for sea glass amongst the pebbles.

Before long it was time for us all to catch the train up to London. Hayley, James and Luke were heading home to Milton Keynes, while Mr A and I had booked a hotel for the night and were meeting Zoe, Mark’s oldest daughter for a birthday eve dinner in Chinatown. We ate a delicious Vietnamese meal at VietFood, coupled with a bottle of French red. It was great to spend some time with Zoe minus children, lovely as they are.

Bustling streets of soho

It always amazes me how the streets of London are never quiet, even on a Sunday night. Especially around Leicester Square there were street artists, break dancers, buskers and many visitors, all vibrant and exciting. By the time we farewelled Zoe, however, we were exhausted and ready to go back to the hotel and crash.

Monday morning was Mr A’s birthday officially, and we were at the location of his chosen birthday gift bright and early. He’d chosen a Tudor watch – the sister company of Rolex. He’d been wanting a watch since his 60th birthday but it has taken until now to select the right one. The chosen option looks fabulous and makes for a very happy Mr A.

Hard to stop looking at your wrist when there’s something new there!
Happy birthday Mr A!

There followed a little browsing around the shops before meeting up with ‘best man’ Martin for a spot of lunch…

Pie, peas and mash times two please…Martin and Mark slip easily back into their old banter

Mark and I have not had cold weather for around four years, so do not own any suitable clothing for the dropping temperatures. We decided that wearing all our clothes at once was getting a little tiring and that we ought to invest in warmer coats. The streets around Carnaby Street helped us out there.

Get ready to sparkle in Carnaby Street London

After a successful afternoon’s shopping, we travelled back to Brighton, bidding farewell to Helen, Stu and the kids on our way back to Truffy.

15-18 August: Another flying visit to the doctor

Author: Mrs A

Location: Zürich, Switzerland, London, Brighton and Arundel, UK

Thursday: After farewelling Mark, I made my way across Zürich by public transport to the airport, a bus to a nearby train station then two trains which deposited me in good time at Kloten Airport for my flight to the UK. Everything was clean and and efficient, but once at the airport, rather expensive! I Feeling peckish I looked at the menu at one of the bars, only to find a pulled pork sandwich for the Swiss Franc equivalent of AU$42 (about £20!)…I passed and found a slightly more affordable snack at Pret a Manger.

The sun sets in Zürich
I just miss the fast train to Brighton by a second…

I finally made it to my sister’s house in Brighton around midnight and collapsed into bed.

Friday morning I was on a train again by 9.45am, heading up to London. My first port of call was Piccadilly Circus.

The famous fountain in the middle of Piccadilly Circus, signposted (and commonly referred to) as ‘Eros’ is actually the Shaftesbury Memorial Fountain, surmounted by a winged statue of Anteros (the brother and playmate of Eros, according to Greek mythology) 

There I met up with three lovely ladies with iSGS I’ve met via the Facebook support group I run. We had a great chat over a light lunch at Bistro Zedel.

L-R: Catherine, Karen, Pat and Gemma

After lunch I made my way to Charing Cross Hospital on the other side of London near Hammersmith, where I had a series of awake steroid injections into my airway. It’s an excellent team there, all very caring, and it makes what could be a horrible experience quite bearable! That said, I travelled back to Brighton, exhausted after the procedure for a quiet night with Helen and brother-in-law Stuart.

Saturday: Just by chance, my cousin Elizabeth had been in touch with me and my siblings in the previous month to suggest a family reunion in the nearby West Sussex town of Arundel. I hadn’t seen her, her brother Giles nor their parents, Jill and Roger for more than 20 years! We couldn’t pass up the opportunity, and so I squeezed into the back of Helen and Stu’s car along with my niece and nephew, and off we went.

Jason, Elizabeth and Jill
Cousin Giles chats with brother in law John and uncle Roger

We met up at the Arundel Wetland Centre, 65 acres of managed wetlands which are home to numerous birds, both native and from around the world, frogs, water voles as well as rare plants and flowers. We were a large group, with our extended family including children bringing us up to 19 visitors ranging from 3 years of age to late 70s. The venue did well to cater for us all, with plenty of information and a Lego trail for the children as well as more details and bird watching hides for the older ones.

Is that a cow out there in the water?
Yes indeed…one of four….
Elliot has had enough of looking for birds, he’s off to find some Lego bricks instead!
A little impromptu blackberry picking on the way around
Beautiful wild herbs, flowers and fruits around the wetlands

We brought along picnics and enjoyed an informative guided electric boat ride around the waterways, learning about the work they do there, the flora and fauna present.

Much laughter as the reeds attack William and Edward on the boat trip
Elliot enjoying the trip sat beside Helen
Off on a boating adventure – Catherine with Isabel, Elliot and Helen
Isabel having a good chuckle next to her auntie Catherine
Beautiful waterlilies on our trip around

We all had a great reunion, managed to chat at least a little to everyone before finishing the afternoon with ice creams and heading off home. A fabulous day out, and such a treat for me – if I had not have been back for my hospital visit I would not have even been there.

The three witches…I mean sisters – Elle, Catherine and Helen….

Sunday rolled around so quickly, and Helen and I ran around Brighton doing a few tasks and shopping. We managed to grab a quick lunch on the beach before heading back home, so I could pack and enjoy a final cup of tea before we headed to the airport.

A pair of wind blown sisters on the beach

The flight was a little late leaving, which meant travelling back to camp through Zurich was going to be challenging. Thankfully Switzerland has Uber in force, and for a reasonable price a lovely young Kenyan man drove me back to camp by 10.30pm…lovely to be reunited back with Mr A again and to be back on our travels.

1 – 6 July: Meanwhile, back in the UK…

Author: Mrs A

Location: London and Brighton, UK

Monday: A taxi collected me from Camping Stobreč early Monday morning and escorted me to Split airport, where I boarded a plane to London, Gatwick. Within half an hour of landing at Gatwick I was on a train heading to London. It was all very smooth – having only 8kg of hand luggage helped!

Split airport – not too busy at 8.30am on Monday morning

Yes, you guessed it, the injections I had flown back for at the end of May had not made any substantial impact on my breathing, and I was on my way back for surgery…very disappointing for us both, but sadly a fact of life we have learned to get used to the past 15 years.

I have to admit that after the heat of Croatia, it was positively refreshing to step out of the airport in to temperatures in the low 20s – like the air conditioning we had been craving all weekend!

I caught a train up to West Kensington in London and checked into the Earls Court Holiday Inn Express near the hospital. I was scheduled to be in at 7.15am, and was keen to get a bit of sleep before the operation.

The view from my hotel room – a far cry from the Roman and medieval buildings of my past few weeks, but not too bad at sunset

Tuesday: I woke early and strolled over to the hospital, meeting junior doctors, an ENT registrar and the anaesthetist, getting weighed, blood pressure and temperature tested. Finally I slipped on a gown and a pair of sexy green DVT stockings and headed to theatre for my airway dilatation.

Both consultants I have been seeing, Mr Guri Sandhu and Mr Chad Al Yaghchi came to visit me in recovery, much to the surprise of the nurse who told me not to expect anyone. All had gone well – my airway had closed by about 60-70%, explaining the challenges with breathing I have been having.

We discussed next steps for my treatment, with both doctors agreeing I should give the steroid injections into my airway another try, but with a higher frequency – every 4-6 weeks rather than 8 weekly. This is what my original doctor had told me, but I had defied him, not wanting to disrupt our travel plans too much…this time, however, I agreed to give it a go. It is going to be hard to keep to our travel plans where I keep having to return to doctors for treatment, but I have to breathe…very frustrating!

Mum travelled up from Hastings to break me out

When I was returned to the next stage of recovery, my mum was there waiting for me, a welcome face amongst all the medical fraternity. Together we left the hospital, taking a taxi the five minute drive to the hotel for the night.

Evidence – 2:10pm I broke out of hospital

We had a relaxing afternoon, catching up on news, a Chinese takeaway and an early night.

Wednesday: Mum and I got to enjoy a final breakfast at the hotel, and we joined by a member of the support group I run, Kelly from Cornwall. She and I had been exchanging messages online for about four years, and she is also a patient of Mr Sandhu. It was amazing to hear Kelly’s story which is quite different from mine, but with some similar symptoms. She’s a passionate and enthusiastic lady – hopefully we can work together and perhaps meet again.

After checking out, I then headed to Brighton to finish my convalescence with my sister and her family.

Thursday: One of my friends from university, Claire, lives near to my sister and also had a hospital visit this week. It was good to catch up with her for an hour to hear how she had gone. Soda water and lime was our choice of beverage as we sat in a sunny pub garden.

Two post op friends – Claire on surgery #1 and me #29!!

Later in the day I joined my sister in collecting my niece and nephew from school, and we took them down to the local park for a play in the fountains down there. Much fun for the children…and ice creams for my sister and I (medicinal reasons of course, soothes a sore throat!)

Yay for vegan ice cream!
Elliot working on stopping the flow….What happened next? Yes the water sprayed me straight in the face!
Isabel enjoying the water
And some park time to help warm up after the water

Friday: It was back up to school with the kids to drop them off for their day, before joining my sister in some shopping, picking up bits and pieces we cannot get in Croatia.

That wiped me out for the afternoon, and I was grateful not to be in 33 degrees as I collapsed into bed for a sleep.

We had a quiet evening at home, sharing a takeaway curry and a glass of wine as the sun went down.

Spectacular skies over Brighton this evening

Saturday: Another bright sunny day with temperatures in the low 20s – making me really appreciate British summertime – I wonder why it never is dull and rainy when I visit? Poor Mark is already sweltering in Split, having started his day with the washing and cleaning out the fridge.

I’m pleased to say my breathing is much better, and sore throat aside, I am feeling good.

Chart showing my peak expiratory flow (PEF) – back on track for now

I will be back on a train to the airport this afternoon, then back to Split this evening. Mark and I have decided tomorrow it will be time to move on and explore more of Croatia…it will all be much easier with a full airway!

30 May – 1 June: Flying visit to London for news about Darth Vader…

Author: Mrs A

Location: Brighton and London UK

Thursday: There was no sleep all night as I awaited my 4.45am alarm to send me off to the airport for my flight to the UK. I farewelled Mr A and taxied to Firenze airport.

Boarding Vueling Airlines flight to London Gatwick

All went without a hitch and my sister Helen met me at Gatwick Airport with my niece and nephew, Elliot and Isabel.

We had a lovely morning taking the kids to a local park, the cloud clearing to a lovely bright sunny day.

Elliot and Isabel being entertained at the park

It was so good to have some time with my sister before Friday’s appointment in London.

Sisters – off to the pub for dinner

Friday: Regular readers will know I have a rare disease, idiopathic subglottic stenosis (iSGS). Sadly there is no known cause or definitive treatment for this disease, which basically results in your airway closing up, filling with scar tissue. The reference to Darth Vader relates to how it sounds when you’re breathing through a narrow airway!

Since December last year, I have been trialling a new procedure which involves injecting steroids into the scar tissue while awake (under a local anaesthetic). It has been working really well, and until about Easter I had no issues with breathing. Unfortunately, since late April I had been starting to struggle more and more, with this visit to see an Otalaryngologist in London the only way to really understand what’s going on. It was a day I was simultaneously looking forward to and dreading, wanting to know more, but fearing I knew the answer already.

I caught the train up to London, and then across to Kew Gardens. There I met with a fellow iSGS patient, Jacky, with whom I have become friends after meeting online via the support group I run on Facebook.

My hospital appointment wasn’t until 3pm so I had a chance to spend some time doing something for me. I have seen many friends visiting Kew Gardens and the Chihuly Glass Sculpture exhibition and was keen to go for myself.

A little bit like my head is feeling!

Beautifully restored Victorian greenhouse

Perfectly popping colour

You can almost imagine these sprouting out of the soil

Like amazing flowers bursting out of the greenery

There be dragons…

Some look better when you step away from the glass and look at the big picture

Wonderful water lilies

Jacky was a great guide, and we explored the incredible sculptures in amazing settings. We spent a couple of hours in the gardens before parting ways.

I headed off to Charing Cross Hospital (nowhere near Charing Cross station, interestingly enough, but nearer Hammersmith) for my otolaryngologist (ENT) appointment.

I didn’t wait long before Mr Chadwan Al Yaghchi (Chad) called my name. Chad is a trusted colleague of Guri Sandhu, the expert consultant who I have been seeing in the UK since 2014 and one of only a few doctors who does the steroid injections under a local anaesthetic rather than a general.

I signed my approval forms and had a laryngothracheoscopy (a camera which passes up through your nose, down your throat, past your vocal cords and into your trachea).

The camera showed the scarring was returning to my airway, and in the area it had built up I was breathing through around 6-7 millimetres (closed by about 50-60% – think about the diameter of a pencil when I should be breathing through at least double that). As you can imagine, any extra mucus will narrow this even further, and constant coughing will cause inflammation which can cause yet further issues. This was very disappointing news, but not that surprising – I already knew it was getting harder to breathe on all these steep hills, I just now had confirmation of why.

Chad continued with the injections, all done through the camera, and within an hour it was all over. Now I begin the waiting game to see how they impact the scarring. I need to nebulise saline (breathe in clouds!) at least twice daily to keep my airway moist and help avoid issues, and am keeping my fingers crossed my peak expiratory flow (how much air I can blow out at speed) improves, and the scar retreats.

The story of my breathing over the past year or so….

The coming week to ten days will be important to determine whether it’s worth flying back in five or six weeks for another injection, or whether I will need to go to more drastic measures and have a dilation operation.

Exhausted after all the news and procedure, I headed back to Brighton for the evening.

Saturday: After a few stressful and full days it was nice just to relax with my sister and her family in Brighton.

Spectacular weather means ice creams and water play

As the day drew to a close, it was time to head back to Gatwick and fly to Florence. It has been a hectic couple of days, made all the more pleasant for being able to spend some precious time with family. 

A fine view of Sussex as the plane takes off

I now know I will be back in London again in July…the question is, will yesterday’s procedure stem the decline in my airway so I can just head back for more injections, or will things continue their downward trajectory and mean I need surgery? Only time will tell…meanwhile I feel even more determined to make the most of our travels.