Location: Harby & Newark-on-Trent – Nottinghamshire, & Ripon -Yorkshire, UK
Wednesday: We left Milton Keynes early and by 9am were in Newark in Nottinghamshire dropping Truffy off at our dealer for some warranty work. One of the reasons we love Fuller Leisure is that they’re a small, friendly family business, and they don’t hesitate to loan us a little runabout for the period of the service. We took the opportunity to drive into Newark-on-Trent, just a 20 minute drive from the dealer.
We knew nothing about the town as we drove in, but almost immediately saw Newark Castle ruins alongside the River Trent. It’s extremely picturesque, and given it has free entry we couldn’t resist an explore.
Leaving the castle we wandered into Newark’s market place, delighted to find it bustling with market day activity. We picked up some fruit and vegetables before exploring the rest of the town. We just love to buy produce fresh from the local farmers, appreciating the fresh taste as well as the opportunity to support local suppliers rather than supermarkets wherever possible.
After some shopping we returned to the car and drove up to our friends’ house in Harby for the night. There we had a delicious meal and shared some of our wine purchases from across Europe….enjoyed post a glass of the 1066 Hastings gin we gifted to Catriona.
Thursday: My cousin’s daughter Hannah has just started a law degree at Lincoln University, just a half hour’s drive from our friends in Harby. Mark and I decided to drive up there to buy her breakfast and ensure she’s settling in alright. Lincoln is a small and friendly city, reminding me of Chester where I spent my university days.
After farewelling Hannah off to a lecture, we drove back to Newark to pick up Truffy.
We were amazed how much the team had completed in a relatively short period of time, consistently good. By 3pm we were on our way again.
When you grow up in the far south of England, anything past Watford Junction seems a long way away. Yorkshire, for example always appeared to be a mysterious place with lots of green on the map where people talk with the most intelligent sounding accent in the UK.
So when our Nottinghamshire friends agreed to a weekend away in an AirBnB together in Yorkshire we were quite excited. Mark, Truffy and I skipped our way up the country, arriving in the city of Ripon on Thursday evening. There’s a carpark right in the middle of the city near the cathedral and Sainsbury’s that allows free overnight parking for motorhomes, and £2 for parking all day. It suited us perfectly and we settled in.
After a peaceful night’s sleep, we decided to stick around the next morning and explore Ripon. Ripon is the oldest city in England and the smallest city in Yorkshire.
Ripon Cathedral was originally founded in the 660s by Scottish monks and tweaked and adjusted over the years.
Today it is still a living and active space, with lots of activity and full of people. Despite being an autumnal Thursday morning outside of the school holidays it was busy and bustling with an art and sculpture exhibition. I couldn’t resist a look.
Not far from the cathedral is a river and canal, so Mr A and I decided to stroll down. The canal was originally opened in the 1700s and restored in 1996. Today it’s clean with a walkway alongside it with several bird hides looking out towards wetlands.
We had a great afternoon’s walk around the waterways before returning to Truffy. We drove off to our AirBnB near Jervalaux Abbey to check in and await the arrival of John and Catriona as the sun set. A great first day in Yorkshire. We will be back!
We never get lessons on how to be a father. Some people just seem pre-programmed and naturally adopt the role, bringing their very best self to the challenge. Other people, like me, have found it a bumpy road, with many a stumble on the way.
This trip back to the UK has given me the opportunity to spend time with my daughters, my grandchildren, and my wife’s and friends families. It’s been precious time, where some of the most poignant memories of our whole trip have been formed. To see both my daughters turn into such incredible mums has been an absolute joy. To see how they have faced every challenge (and there have been many) head on and powered through. I’m so very proud of them.
Parenting in this digital age seems have some unique opportunities and risks. There is never a shortage of on on tap entertainment for the “witching hour” when fractious little ones can be offered a screen to calm them down. But how much screen time do you give them? Are any taps being tuned off? The imagination required to entertain themselves? I’m certainly not qualified to answer that question, but it’s one I see many parents posing themselves.
As we supplement our face to face networks with digital ones, I think that also provides new opportunities and risks for parents with young children. Is the screen time an opportunity cost for building face to face friendships out in the street, or do the multi-player game platforms replace that? How do parents ensure there’s a balance between sitting and moving around? I watched my four grandchildren spending time together racing around screaming with joy and I know where I would put my bet.
There are some difficult choices for parents to make, with so much conflicting information about the risks and benefits to children of enabling their access to information and entertainment. How do parents equip them to filter what they see? Through censorship or education and guidance?
I watch my daughters having to make decisions on these topics, with, from what I can read, very little good quality balanced content to help them.
Family relationships are rarely easy to navigate smoothly, ours being no exception, but I can only thank the much smarter than me Mrs A for her support and positive modelling as to how I can be a better father, grandparent and uncle. Always in her debt it seems!
Location: The Ridgeway – from Goring…heading west, Oxfordshire
Friendship – where would Homo Sapiens have been without it? There’s an argument to be made that the ability to form friendships is one of the most critical skills that has enabled the development of our species. Being able to co-operate across large groups has been fundamental to so much of what humans have achieved, and learning who you can trust and who will not let you down, is at the core of pretty much every big achievement. Humans didn’t build the pyramids, reach the moon, or invent Vegemite (Marmite?!) on their own. Friendships enabled groups of people who didn’t start off knowing each other to work together for a common goal without dissolving into a chaotic mob.
Making and keeping friendships has been central to my life. As an only child with two busy parents, I learnt at an early age I would need to find people who I liked to spend time with. At twelve years of age I made some friends at school who, over half a century later, are people who I love to hang out with, or in the case of this last weekend…ride a bike with.
We gathered at one of their houses deep in the Hampshire countryside, embodying all that is good about rural England. Rolling hills, quiet byways, and pubs with great beer!
Our host Andrew had done a great job of organising our ride, trying out the route, getting his car to the end of the route so we could just do a one way trip, and most importantly, identify where the best spots were for a spot of lunching.
We were so fortunate with the weather, a crisp autumnal morning with blue skies greeted us. We set off in high spirits climbing up onto one of England’s famous old roads, The Ridgeway. It runs for over 140km though some surprisingly remote country in the heart of England.
Well our ride started a little slower than planned with some on trail mechanics being needed for some recalcitrant gears. I provided distant moral support, given my inability to wield a spanner without causing more damage than I solved.
We needed to make up time, and cracked on across some spectacular scenery with nearly 360 degree views across the downs. A tea break was called for, in the time honoured fashion of English country gentlemen out on a jaunt. I had packed a little surprise (well quite a large one actually) to keep the wolf from the door.
We finally dropped down off The Ridgeway into a small village, where of course, there was a pub, and lunch was served. And then the old maxim of what goes down….must go back up…hit my two riding companions hard. They were on manual bikes, I did feel for them, it would have had to have hurt.
The best thing about the ride, other than the beer, was the chatting to each other as we rode, often interspersed with some animated verbal sparring, in what passes for affection amongst Englishmen of a certain vintage.
We made it to our planned end point having covered 40 miles (65km) of track that was fairly rough in places, so quite smugly hit the pub in the evening. It was a weary trio, well two of us especially so, and you wouldn’t have called it a rollicking night. Age showing its signs?
The next day was another big blue skies cracker, but due to some family commitments we only rode for half a day, again through some stunning countryside. Despite the late kick off we still managed to fit in two pub visits, so yes this was a pub crawl interspersed with some riding, the cynics would say.
We all left on Sunday all the richer for the memories of the time spent together. Friendships need nurturing, and digital time only goes so far. I feel privileged to have these people in my life, and all the other friends we have.
I lost a friend last year to depression, and I just didn’t understand it. Despite all the friends he had, that wasn’t enough to make life worth living. For me friendships are what gives life so much of its purpose. To see the smile of a shared joke, that’s really only funny because of the years you’ve had together. To feel the support when you’re in a tight spot, or the gratitude when you can return a favour. This is what makes us human.
Nourish your friendships, they are the family you chose…
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!
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.
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).
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.
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.
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).
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.
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.
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.
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.
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.
Location: Scotney Castle, nr Lamberhurst, Kent, UK
The earliest records of a building at the location of Scotney Castle date back to 1137 with the current ‘old castle’ dating back to the late 1300s. These days there are two castles on site – Scotney Castle is the newer building, built in the early 1800s for the Hussey family from Worcestershire who made their money in the early industrial revolution. They had originally moved into the old castle, which became too cold, damp and drafty.
Mum and I came to visit this National Trust location about 10 years ago, so were due another visit. It was a mostly overcast morning, but not too cold for autumn. Last time we came it was July, and I remember the flowers being incredible. This time it is definitely the beginning of autumn, with plants seeding and drying out, leaves starting to fall and the colour palette decidedly more subdued.
The new Scotney Castle was first opened to the public in 2007 after the death of the Betty Hussey. Her husband Christopher had died in 1970, bequeathing the house, castle and estate to the National Trust. Since mum and I visited in 2009 the whole house has been preserved and opened up to the public as well as the old castle.
Tenants of apartments on the estate include Prime Minister Margaret Thatcher who rented the Belfry flat for a time during the 1970s and 1980s to escape Westminster.
The gardens are considered prime examples of the Picturesque style of landscape design – basically gardens which were designed specifically to be painted. As such, the old castle was partially dismantled to create a ‘ruin’ as a centrepiece to the garden, surrounded by a water lily filled moat and viewed from the ‘new’ Scotney Castle.
The National Trust has plenty of paid gardeners and volunteers working on the grounds, using old papers, paintings and photographs to restore the gardens to their former glory and adding planting which fit in with the original plan.
We toured the gardens, admiring the views in all directions.
We were given a 15 minute slot during which to explore the house, but took 40, it was so interesting. It has the feeling of a living home rather than a museum, with lots of quirky details from the most recent residents sitting alongside the old furniture and 19th century interior design.
The volunteers in the house were passionate and excited to share their learnings too, pointing out a bookcase which is really a secret door, and a Dutch masterpiece above the dining room fireplace bought from a local pub for the princely sum of £30 in the early 1900s (even then it would have been far more valuable)…the Tate Gallery in London is apparently keen to get hold of it! How the local pub ended up with a Dutch masterpiece is a story we didn’t learn, but I bet there’s an interesting tale there too!
Scotney Castle is definitely worth a visit if you are in the East Sussex/west Kent area – just a 40 minute drive from Hastings.
Tuesday: We arrived in Hastings mid morning and Mark was off into town right away on his bike for an eye pressure test…the first since before we headed to Europe in May. Thankfully the results were great – his eyes stable and healthy – such a relief. Meanwhile, I got busy tackling the washing mountain, pleased to be able to hang it out in warm sunshine and a gentle breeze.
After a light lunch with mum, Mark and I jumped on the bikes and rode into town, taking a flask of herbal tea with us. We called into Waterfalls, a local tea room and gift shop with a fabulous home cooked menu to pick up cakes (they always have a dairy and gluten free options available along with their ‘normal’ ones) and continued our ride.
My sister and I used to always take our bikes out along Hastings seafront, loving the exhilaration of riding in the fresh salty air, the promenade offering a safe haven from the cars. These days it is a designated cycle-pedestrian shared path, so we don’t have to feel guilty for riding along. We headed to Hastings’ Old Town. This area of Hastings was mostly built prior to the 1760s (before bathing in the sea and drinking sea water(!) was made popular for health reasons).
Hastings has been home to fishermen (fisherpeople?) for more than a thousand years. These days there are 25 fishing boats at The Stade, making it the largest land-based fleet in the UK…needless to say the seafood in Hastings is deliciously fresh, and there’s a wide variety to choose from.
We rode to the extent of the seafront, an area called Rock-a-Nore. Here we could see right along the coast looking towards Dungeness in the distance, albeit with a chilly autumn breeze off the sea. There we enjoyed our tea and cake before heading deeper into the Old Town. Hastings Old Town is split almost in two, with All Saints Street (being headed by All Saints Church) being traditionally the home of the poorer residents, the fishermen’s cottages and workers in the fishing industry, and the St Clement’s Church area being the better off, wealthy area of Old Hastings. These days both have their charm, with the older housing on All Saints Street being in different states of repair, and many houses dating back to the early 1500s.
Like many of the French towns and villages we have visited, Hastings Old Town used to have a wall as defence against attack from the French. It fell into disrepair and was pretty much all gone by the 1800s. There are still several pubs in the old town, many of which have interesting historical takes linked with them. One of the pubs on All Saints Street (The Stag Inn) has a tunnel linking its cellars to a cave in the cliffs, where smuggled spirits were brought in from France (or pirated from ships attacked in the English Channel).
A brief ride down George Street, still decked out in rainbow flags from the fourth Hastings Pride (25 August) and we headed back home for the evening.
Wednesday morning looked very wintry in comparison to Tuesday, with heavy grey skies and drizzle. It would have been easy to stay indoors and do not much but instead mum, Mark and I headed back to the Old Town by car for more of an explore on foot. It was very cold and windy there so we didn’t linger on the seafront, instead ducking off down High Street, long been the hub of the town (originally known as Market Street). Today it is still full of little interesting shops, old antiques alongside gift stores and delis.
I follow the Hastings Old Town Appreciation Group on Facebook and a few weeks ago I had seen my friend Emma mentioning a 1066 Hastings Gin sold in Penbuckles Delicatessen where she works part time. We decided to call in. What a great deli! This is the type of location we dream of finding, packed full of produce from local farms and businesses, ranging from cheeses, wines, milk, jams, pickles, sauces, cakes and savouries. They have a real focus on the environment, minimising waste and utilising biodegradable products where possible.
It was a cappuccino for mum, a 70% dairy free hot chocolate for me and a white hot chocolate for Mr A, accompanied by a vegan pastry roll and a St Leonards Pasty. All delicious. And we mustn’t forget the gin tasting – we tried samples of the 1066 Hastings Gin and also the award winning Haswell Gin. Both very tasty with and without tonic. We bought a bottle as a gift for friends…hopefully they’ll let us taste a drop!
We bought some cockles (boiled molluscs in vinegar) from the fish market on our way back to the car and headed home for the afternoon.
Mr A waved goodbye and headed off for the first time driving Truffy without his co-pilot. He’s off to catch up with some old friends from Australia who have moved back to the UK, before heading off on biking adventures with some more friends this coming weekend…I’m sure he’ll be back soon to share more about that!
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.
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.
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.
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.
We had a lovely morning with them, and in the afternoon Mr A and I both had hair cuts to make ourselves more presentable!
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.
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.
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.
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.
There followed a little browsing around the shops before meeting up with ‘best man’ Martin for a spot of lunch…
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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!
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.
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.
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!)
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.
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.
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!
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.
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.
It was so good to have some time with my sister before Friday’s appointment in London.
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.
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.
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. ￼
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.