Location: Little Gaddesden, Hertfordshire, Hastings, East Sussex and London.
After a lovely morning out with Hayley and the boys, we said goodbye to them and drove a short way south to my cousin’s house in the village of Little Gaddesden. It’s getting to the point now that we are constantly saying goodbye, not knowing whether we will be stopped from seeing family because of Australia’s restrictions on people leaving the country, or by local lockdowns. It is heart wrenching either way.
A lovely relaxed evening with Karen and Iain ensued, a delicious Sunday roast and some fine wine consumed. Monday morning dawned bright and sunny, so Karen, Mark and I set off on a walk (map of our route).
Little Gaddesden is surrounded by the beautiful countryside of the Chiltern Hills Area of Outstanding Natural Beauty (AONB), most notably the Ashridge Estate, the location of Ashridge House, a magnificent mansion built in the 1800s on the site of an old priory built in the 1300s.
We followed a Roman road (known locally as ‘spooky lane’ with several reports of ghosts and witchcraft links) which was sunk by the third Earl of Bridgewater some time in the 1600s to allow his wife to travel in a carriage down the road hidden from the peasants. The green brick walls covered by winding tree roots and ivy certainly looked mysterious.
Footpaths wind their way through the countryside in every direction, the vibrant colours of autumn catching our eyes. We walked across fields and down lanes, our ramble finding it’s half way point conveniently at a gastro pub in the lovely old village of Frithsden.
After a delicious lunch, we looped back around via a restored ancient woodland and the Ashridge Estate, spotting a couple of shy does in the bushes near Karen’s house. They were members of a large herd of fallow deer living wild around here, descendants of deer originally introduced during the 13th century for hunting and venison.
Tuesday morning saw us once again saying our farewells as we pointed Truffy’s nose further south to East Sussex to spend some time with my mum.
We had a relaxing few days there, making the most of a sunny afternoon for a stroll around St Leonards.
On Friday morning Mark and I caught a train up to London. Mark went off to have a look around the outdoor shops while I caught a tube across to Hammersmith to have some more injections in my neck, always a joy!
London was eerily quiet, being in Tier 2 of the alert levels (high), many people were staying away from the public transport and working from home.
Charing Cross Hospital (not anywhere near Charing Cross Station, interestingly enough!) also had few people around as I found my way to the ENT outpatient clinic, had my temperature checked (35.8°C) and waited for the team to be ready to see me. The procedure went as planned, with some great news – there is no sign at all of any scarring in my trachea – I am 100% open! That’s the first time that has happened since 2016.
It was hard to celebrate however, as my vocal cord was temporarily frozen by the local anaesthetic and I had no voice, but I made my way back across London to reunite with Mark and head back to Hastings.
Fish and chips from the local chippy concluded our time in Hastings, and after lunch the next day (voice back working, to Mark’s chagrin!), we farewelled mum for a few days and travelled a short way across country to Brighton… It is the start of an exciting week – my sister’s getting married (Covid-19 style!).
When bad weather is given a name, you know it’s not going to be a fleeting visit, and this has been the case with Storm Ellen. Ellen is a combination of two storms – a tropical storm that originated off the east coast of the USA which met up with another storm coming from Greenland. Is this just weather or the impact of climate change? Nevertheless, the resultant high winds and rain have been what we have been ‘enjoying’ here the past week.
We moved inland from Bude to a farm near Holsworthy, a small market town just across the border into Devon. It is very rural, with few major roads, predominantly a network of tiny narrow lanes, winding around and over the rolling hills, joining up little villages and farms. It makes for ideal walking and cycling territory, and with a break in the rain we went for an explore.
Holsworthy holds a small market on Wednesdays and Saturdays, so we drove in to check it out. It really was small, but we found a lady selling a whole stall of vegan cakes. Being dairy-free, this was very exciting for me (I rarely can consume cake!), and we selected a chocolate orange cake which was divine, and ideal for an afternoon of sheltering from the rain with a cup of tea.
Mark did a little research and found a vineyard about an hour’s cycle away which offered tours and tasting. The wine industry in the UK is growing rapidly and some of the more established vineyards are achieving a great reputation, though to date, British wine accounts for only 1% of consumption here. Its another sign of the changing climate, with the South of France often reaching summer temperatures in the mid to late 30s, and parts of the UK now much more similar to temperatures of France of the past.
We didn’t get very far, with a thorn wedging itself into my rear bike tire, and after 5km I was off my bike and pushing it back to camp. Perhaps it was for the best. Once back, the weather changed , with blustery showers accompanied by strong gusts of wind. We rebooked the wine tasting for next weekend, when hopefully the weather will be more favourable.
Friday morning we drove off to Exeter, about an hour’s journey south-east. My breathing had been doing really well, but slowly starting to decline, so I had an appointment to have some steroid injections at Charing Cross Hospital in London. I farewelled Mark, donned my face covering and settled onto the train to Paddington.
All went well at the hospital, with a successful procedure and my trachea looking really good apparently, and soon I was off to stay the night with friends in Twickenham. I first met Jacky face to face back in 2017, but we had been friends for a couple of years before that, having met online through the support group I run for patients with idiopathic subglottic stenosis. She and her husband Austin were amazing hosts, taking me out in Twickenham to an Italian restaurant, followed by a stroll along the River Thames.
Before I caught the train back to Exeter, we enjoyed a Saturday morning explore along the riverside, opening my eyes to a new side of Twickenham, which I previously only knew for hosting rugby matches. Lovely parks, historic houses, art galleries, barges and birds on the river, it was really interesting and very unexpected.
We’ve been in the UK for six months now, and in all that time had not managed to go for a pub Sunday lunch. Linda, one of the owners of the campsite we’re staying on (Headon Farm), had recommended lunch at The Black River Inn in the village of Black Torrington, so we booked ourselves in.
It was a 40 minute cycle across country to Black Torrington, following some of Route 3, a cycle network along quiet lanes and cycle paths between Land’s End and Bristol. We were grateful for our motors on the rolling hills, particularly on the way home.
A brilliant dining experience, well deserved of their great reputation. They even served Wicked Wolf ale, the beer sold by our old neighbour in West Bagborough.
The coming week is going to take on a different pace, with my sister Helen coming camping with her family, and friends from Honiton also joining us for a couple of nights. We’re really looking forward to it – whatever the weather, we’ll brave it together!
Life is becoming quite surreal, yes more so than usual! As the coronavirus takes hold globally and ever increasing measures are put in place to help protect health systems and patients, our travel life is certainly not going as we expected.
Mr A and I went our separate ways on Sunday, him heading up to Doncaster to get a new levelling system fitted on Truffy (means we can travel with a washing machine instead of giant ramps, and getting us level each night will be much easier). I meanwhile headed south to stay with my cousin and her family in Little Gaddesden in Hertfordshire.
Bumping elbows instead of hugging, administering hand sanitiser at every opportunity and washing hands for a good 20 seconds, we are doing as much as we can, but one is all too aware of the invisible enemy out there. Every cough is quickly smothered with an excuse, a lack of fever or breathlessness appreciated. I had an element of anxiety that I might be introducing our invisible enemy into the healthy household, despite not having knowingly been in contact with anyone with Covid-19. They too had the same fears with my cousin’s daughter Ella still going to school.
My reason for heading south was a doctor’s appointment in London. I’d had some unusual blood test results earlier this year, so was off to see a specialist at the Royal Free Hospital in Hampstead. Until the morning, I was neither sure whether the appointment was still happening, nor whether my mum would still take the train up from Hastings to meet me there.
It turns out, both happened. With unfamiliar trepidation I caught a train down to London, careful to disinfect everything I came into contact with – the touch-screen ticket machine, the arm of the seat I sat in. There was hardly another person on the train.
Mum and I met at Hampstead tube. It felt very strange only to do a very brief and careful hug after not seeing each other since November, but with both of us in high risk categories (mum over 70 and me with an airway disease) we were being ultra cautious. Mum spent the first 20 or so years of her life in the Hampstead/Gospel Oak area, so this was a real trip down memory lane for her.
It was a beautiful spring day, blue skies and a gentle breeze, the air clear and the streets not crowded. We strolled up as far as Hampstead Heath and enjoyed the views over the city, life going on with new leaf buds fit to burst, daffodils bobbing in the breeze and blackbirds singing in the trees. You cant help but wonder whether mother nature has her own plans for saving the planet by wiping out the cause of so much damage…let’s hope not!
We enjoyed delicious vegan lunch in a bright little cafe then it was down to the hospital.
An hour later and we were off, catching the number 24 bus to Camden Road, the same route mum used to take to work when she lived in London, BC (before Catherine!).
It is expected that soon over 70s will be asked to completely avoid any social contact. This may well be the last time I see mum in person for weeks, or even months, but it is worth it to keep her well and safe. We farewelled and headed home on nearly empty trains, repeating the regular sanitising and social avoidance.
It’s a tough time to be travelling. Watching people in France in a two week lockdown makes us wonder what we are in for. Our family is so close, and while we would love to spend time with them, it looks like we might have to keep our distance. Our plans remain forever fluid as we adjust them by the moment, hoping that one day this will be just another experience we lived through and survived.
I’m sitting in the our caravan waiting for Catherine to come back from yet another doctors appt. She never complains, just gets on with it. This morning is another set of steroid injections in her neck. Not a pleasant exercise, but seems to be keeping her breathing well, so for her worth the discomfort.
We are all packed up and ready to leave our house-sit in Mosman and head north up to Noosa over the weekend, via our friends in Newcastle.
Reflecting on our six weeks here in Sydney, we have missed breathing clean air, missed feeling well (we’ve both had the flu and lingering coughs), and both felt extremely anxious for friends around the country whose properties have been at risk from the fires. On the plus side we have had some great catch ups. Friendships can be maintained on line, but there’s nothing like sharing a glass and breaking bread, mostly a naan with a curry!
We have watched the bush fires rage around the country, and felt the affects of the smoke here in the middle of its largest city. Australia is going to be at the pointy end of climate change and likely will continue it seems to wrestle with balancing the economic dependence it has on fossil fuels, the lack of climate strategy a succession of our governments has failed to deliver, and being the hottest, driest continent on the planet. I will say no more because I’m not qualified to speak on the science of climate change, although that doesn’t seem to stop some people.
I have read all that I can absorb and have come to what I believe is an informed conclusion. I would encourage you to do the same. The most data rich (rather than “opinion rich”) source I have found is The Conversation, a network of not for profit web media outlets that publish content written by academics and researchers. Also NASA’s web site has some great global content as well. So who would you rather trust, the politician or the scientist? The news reader paid by Robert Murdoch, or someone who actually has some expertise? Sorting through the lies and distortion that hurtle at us from everywhere is going to be the key challenge I think for this decade. We are privileged to live in a democracy, a political system that is always under threat when the worst in humanity is stirred by those who appeal to our fears.
While based in Mosman we have dashed out on a few walks when the air has not been too toxic, and out on the water for some paddles. We have walked along a harbour side path numerous times, and hardly seen another soul.
Sydney is such a city of contrasts. The bustling CBD, and then these quiet paths through our green spaces.
It’s one of the things we have always loved about the place we have called home for over 20 years. I really hope those who have stewardship of its future, state and city politicians, provide the strategic thinking it will need to continue to flourish.
As I write this blog the lovely Mrs A is standing in front of a room full of super smart top surgeons and other health professionals from around the world at the “Cutting Edge Laryngology” conference in Edinburgh this week, presenting on how the rare disease she suffers from (idiopathic subglottic stenosis) has impacted her life, and how she has fought back.
For those unfamiliar with her story, she was diagnosed 15 years ago with this disease, and that was after several years of misdiagnosis. Being a researcher (a geek she bashfully says with that lovely smile) she turned to the internet for answers on how the disease is triggered (what had she done “wrong” to deserve it?), what treatment works and how to access it, and how to manage your life in the interim. There was almost nothing out there at the time, so in October 2009 she created a Facebook support group to see if she could connect with other people struggling with the same dearth of information.
Well after a slow burn, almost a decade later the group is now approaching 3,700 strong, thanks to endless hours of her nurturing and managing it and providing 24×7 support to fellow suffers around the world. Those who want and need to reach out and chat with others who are equally mystified, scared and often depressed about the lifestyle and health implications of having this life threatening and lifestyle inhibiting disease. In addition the group helps enable research into causes and treatments sponsored by medical universities, again something Catherine has driven and managed.
Idiopathic subglottic stenosis restricts the airway through scarring that builds up in the trachea (with no known cause) and creates difficulty in breathing. Sufferers just cant get enough air through their airway to function. The severity of their symptoms is dependent on how narrow the airway becomes, ranging from an irritating shortage of breath, to a blockage resulting in death. The rare disease affects 98% women – two in a million.
What I want to underline though is the how the glass is always half full for some people, and Catherine is the perfect example of that. She could have sat back and accepted she was a “victim” of this disease, given up exercising, given up trying to find out what causes it. But she didn’t, and I think it’s an inspiring story for others.
When we are out and about on our wanderings around the world she seeks to connect face to face with the people she has got to know online. I’ve been at a number of these meetings over the years, and I can tell you I have heard them say thank you for everything from saving their lives, to saving their sanity. We’ve had some amazing experiences as a result of connecting with these people, and I guess that’s one big reinforcement for me that if you give of yourself, as Catherine has, you are rewarded in so many unpredictable ways. I think the most valuable for her is the sense of contribution that she is making. Most studies on happiness will point to a key driver for people who describe themselves as experiencing that elusive state of happiness as having a network of relationships in a community (work family or other) that value that contribution. That’s what she has created though her voluntary work, and its a credit to her.
The upsides of creating this group just keep rolling in, none of them looked for at the beginning, and none drive her now. For instance, we have met so many members of her group now in different countries. In Australia, New Zealand, the UK, in the US, Netherlands, Germany and Austria, all who have been so welcoming of us and help make our travel time in their country so much more enriched with local knowledge. We’ve made new friends and had an insight into lives across the world we never would have had otherwise.
Also the medical community that she has got to know have also been truly inspiring for her. They work so hard to help their patients, with often little feedback on when they succeed. She’s met some fantastic people this way as well, and all the emotionally richer for it.
I attended one of the social functions of the conference earlier in the week and watched Catherine working the room, talking to these medical experts, building her network, and ensuring that she is in the best possible position to continue to get their support when she needs it, to help out one or all of her group. She was awesome.
Illness rarely has an upside (or does it?), but she has made one in this case. I’ve watched her develop new skills, and leverage, deepen and broaden her existing ones.
So that’s really want I want to say, that Catherine is a model for me of the potential “up side” of being unfortunate enough to suffer from an illness and I am constantly learning from her how to be more positive when life sends its little curve balls. Also that social media is a tool, to be used like any tool – to help or hurt.
Thank you to everyone who supports her in this voluntary work, whether by words of encouragement on the Facebook group, or friends who give her a nod to the time, dedication and perseverance it has taken. Give her a big round please.
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.
Location: Sokorlarski Raptor Centre and Zadar, Croatia
Tuesday: Departing camp in the morning, we headed to the Sokolarski Raptor Centre, just a fifteen minute drive from where we were staying. The centre is completely run by volunteers and funded with donations and visitors like us.
They are the only centre in Croatia which is set up to rescue birds of prey, restore them to health and release them – or in the case where they cannot be released (eg they are with humans too long) then they care for them lifelong. Injuring a bird of prey in Croatia is punishable by imprisonment, so they also are responsible for being the CSI of the bird world, identifying what or who may have killed a bird.
It wasn’t long before a keeper’s talk began. It is clear that everyone working here is passionate about the birds they are caring for, and educating people about them.
We were first introduced to the largest owl in the world, the Eurasian Eagle Owl. This female had been hand reared from a chick, so could never be released back into the wild.
A volunteer was sought to demonstrate some particular characteristics…and of course one is found….
The Eagle Owl population is now stable throughout all European countries, other than the British Isles where they are making a gradual comeback after being absent for around 200 years.
Fun Eagle Owl Fact
Owls eyes are not light sensitive – so if you shine a light into them the pupils will not change size…instead, when their pupils are large, they are seeing in macro, observing everything right in front of them. When their pupils shrink down, they are seeing things in the distance, like a pair of incredibly powerful binoculars. Eagle Owls can see a mouse move 8km (5 miles) away!
Having done her bit demonstrating the beauty of her species, she is fed a chick, which she sucks up like spaghetti…
The Centre also cares for several Harris’ Hawks, all bred in captivity. These are usually native in South America and southwest USA, but did a good job of demonstrating bird flight and the reason they do not fly away when allowed freedom. Again a volunteer was required…
Just beautiful birds. Did you know that Velcro is modelled on birds feathers? Or that keratin in shampoo (that makes your hair shine) is made from chicken feathers? Or that spoilers on the back of cars are modelled from hawk tails in flight? There are so many inventions direct from birds…
We had a look around some of the other raptors being cared for there, before heading back to Truffy and pointing north.
Our destination for the day was Zadar, a town on the coast about 160km north of Split. Once parked up at a very ordinary campground (basically crammed cheek by jowl in someone’s back garden with water access) we jumped on the bikes and cycled 10km into town.
Zadar traces its origins back to the 9th century BCE, with evidence of Stone Age habitation around the area. The Romans settled there in the the year 49 BCE. Today the town has extended from its original walls, but much of the historical centre is still there, with a rich variety of archaeological museums and Roman history visible throughout.
It was not a picturesque cycle, riding through derelict ports and long abandoned industrial areas, but before long we were riding across a bridge over the harbour and into the old town. Like many old towns we have visited, the streets are polished with centuries of feet, and Zadar old town is quite pretty. It was listed by UNESCO in their world heritage list in 2017.
We rode through the town, past old pillars, remnants of ancient Roman palaces combined with modern shops, cafes and ice cream stores. Every corner revealed more layers of history with current day use.
We wound our way to the waterfront with views out to the island of Ugljan, the sky darkening and flashing with an approaching storm. On the waterfront there is a sea organ, chiming out sounds ethereally with each ebb of the water.
From there, we found ourselves at the Forum, a large square full of Roman remains. Among the ruins of temples and colonnades stands one intact Roman column, which in the Middle Ages served as a shame post where wrongdoers were chained and publicly humiliated. Many of the other ruins have been used throughout the centuries as foundations for churches and other grand buildings, historical in their own right.
Mark decided to find a seat at one of the many cafés surrounding the Forum while I climbed the 12th century St Anastasia bell tower for a birds eye view of Zadar. I felt rather chuffed that at the top of the 180 spiral stairs I was not even out of breath, unlike most of the visitors reaching the top…and just a week post surgery. Breathing is so under rated!
The dark clouds got closer and closer, and before long the first drops of rain fell. We relished the cooler temperature, taking the edge of the 35 degree day, but decided it might be wise to cycle back the 10km to camp before it got worse.
Wednesday: The thunder, lightning and torrential rain raged all night, and we awoke to much more comfortable temperatures. We decided we had spent enough time on Croatia’s coast and set off inland.
The morning was cool, showery and windy, so a perfect day for driving as we pointed east and drove towards the hills.
We took our time driving, stopping for lunch and an afternoon nap (still a bit tired from the general anaesthetic last week, and Mr A wasn’t complaining either!), eventually arriving late afternoon at Camp Vugec Plac, just outside the town of Samobor, west of Croatia’s capital, Zagreb.
What a contrast to yesterday’s scruffy parking lot! This is a brand new camp with hotel quality bathrooms and showers, and parking on lush mowed lawns, surrounded by beautiful countryside. There is even a lovely looking pool.
We got set up and then sat down with a glass of Italian wine, enjoying the evening sunshine and birdsong. This is more like it, this is exactly why we travel.
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.
Friday: We left the Cinque Terre behind and headed inland into north western Tuscany. Catherine (navigator extraordinaire) had spotted on one of the apps that we use to find camps a winery that was welcoming motorhomes to come and stay on their property. Sosta La Cantina del Vino is also a 5 minute walk from “One of the most beautiful villages in Italy” the hilltop town of Barga, close to Lucca.
We were greeted so warmly when we arrived, and set up on their lush front lawn, power and water on hand, and invited to a wine tasting later in the day. That’s not a bad start for our first day’s exploration of Tuscany!
The village awaited so we walked in and I dived into the first providore I spotted, to be offered wine to taste and local produce…its just gets better.
A wander up to the old part of town and a cafe in a quiet courtyard just couldn’t be resisted.
We tried the local bean, lentil and potato soup, just delicious. Some local cats even decided to let us get our feline fix. ￼
I carried on to sample local cheeses and meats, then we rolled down the hill to camp.
I decided to take a quick explore on the bike. Thank goodness for that Bosch engine I would have never have made it up these hills so quickly and seen so much.
I still burnt a few calories though and worked up a thirst for wine tasting. What a grand affair this was, with Prosecco, then rosato then a Chianti, with each wine local delicacies were served.
We shared the tasting with the occupants of a couple of other motorhomes that were parked there as well. It was quite an international evening with Germans, an Israeli, Italians and us with a couple of nationalities to chose from. Sometimes we play the Australian card, as Brits dont seem to be too popular right now in Europe. It’s more of a shaking of heads and some quizzical eyebrows and wishing them the best of luck on their separate path post Brexit.
Saturday: We had arrived in low cloud, but waking the next morning this view had opened up.
Wow – after spending so many years in a country that’s basically flat with a few bumps, it thrills us to see mountains like this. I headed off into the village to source breakfast and discovered it was market day. Catherine’s “fear of missing out” kicked in and she joined me to pick up some local goodies.￼
Following a delicious lunch consisting of some of our fresh purchases, we went out for a ride on the bikes to explore more of the area, enjoying the gorgeous spring sunshine and perfect temperatures in the early 20s.
The further out you ride, the greater the views become, incredible vistas with the mountain ranges looming high over the town
I watch life in Tuscany unfold, trying to figure out what’s peculiar to the region, so what is different about people’s lives here and what’s universally the same. One of the main joys of travel for me. Striking up conversations and learning what I can. I think the big difference seems to be the rhythm of the day, with many, but not all, businesses closing for an afternoon break (the “riposa”). Some said they use the time to return home to family if possible, then head back to work mid afternoon. Family time seems to be given higher priority, and lives seem the richer for it. However, to close your business when so many tourists are passing its door and want to spend money when suits them is a brave decision. Some say the tradition is dying away, but I saw no evidence of that in this town in Tuscany with around 80% of business closed for several hours while us tourists marched past with a hungry look in shop windows.
Sunday: It was time to leave, and that meant no HGVs on the roads today, another pleasant change from what we’re used to in Australia. They are banned in Italy from Sunday travel at slightly different times depending on the time of year. What a relief on some of these twisty roads! We are now heading into Lucca, but that’s for Catherine to share.