1-17 January 2020: Goodbye Sydney…for a few weeks

Author: Mr A

Location: Mosman, Sydney, Australia

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!

Friend Richard cooks up a storm on the only BBQ meal we have eaten on our trip back to Australia (so far!)
A delicious lunch with Rosemary and Richard at their house-sit in Clontarf
Sydney Red Gums frame a view over Middle Harbour

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.

Mrs A walking on a path around the Harbour – you can hardly believe we’re in the middle of a city of more than 5 million people
Looking out over the Spit
Eastern Water Dragons are plentiful on the Harbourside walks
A magnificent beast
Another fearless Dragon poses by the path

Sydney is such a city of contrasts. The bustling CBD, and then these quiet paths through our green spaces.

The Spit Bridge opens to allow sailing boats across
The serene waters on a lovely clean-air day

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.

25-27 September: Mrs A – making a difference

Author: The very lucky Mr A

Location: Edinburgh, Scotland, UK

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.

Catherine attended at the invite of Gemma Clunie, Clinical Specialist in Speech and Language Therapy at Charing Cross Hospital where Catherine is treated in London (Photo by Dr Justin Roe at the event)
Using metaphor to communicate what it is like to live with idiopathic subglottic stenosis (photo by Dr Camilla Dawson at the event)
Concluding with the power of nature to communicate how it feels to have your own body slowly suffocate you (Photo by ENT & Audiology News at the event)
A snippet of some of the incredible messages onTwitter for Gemma and Catherine’s presentation from medical professionals attending the session (Mrs A’s alter ego is @SparkySparkler)

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.

www.facebook.com/groups/IdiopathicSubglotticStenosis

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.

Some of the lovely people Mrs A has met over the past decade through iSGS

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.

Mingling with a glass of bubbles

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.

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.

9 – 10 July: Birds of prey lead us to more Roman ruins

Author: Mrs A

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.

The talk was conducted in English – this guy endearingly called as all ‘darlinks’

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.

Eurasian Eagle Owl – those claws can grip 50kg of pressure per square millimetre – she could easily take down a young deer for example.

A volunteer was sought to demonstrate some particular characteristics…and of course one is found….

I am introduced to our feathery friend
Heads are apparently not threatening compared to hands – her feathers are as soft as silk, helping her fly silently
As a thank you for my time I am allowed an Eagle Owl hat for a few moments!

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…

Going, going, gone…no place for queasiness in nature…

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…

She spots lunch in my hand and flies down to munch
Less than half a kilo of bird here
Wouldn’t want to mess with that beak though
She has an easy life here, food provided and an hour of flight time per day

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.

Mark enters through one of the original gateways

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.

Grand old buildings from the 1500s
A fine combination of old and new

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.

Looking out to Ugljan Island – wondering whether the storm is heading our way
People sit on the steps enjoying the organ sounds

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 rides past the shame post
Mr A discovers his name….almost….

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!

180 steps up to the top of the tower, past green brass bells….
Fabulous views from the top of the tower
I wonder whether these churches were purposely aligned…
Looking into the centre of town and the busy shopping strip
Looking west towards the marina and the newer town

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.

First rain drops falling send us back to camp

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.

Very new scenery for us, heading into the Dinaric Alps towards Zagreb on the E65

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.

A travelling bedsit with a view…ready for a cooler night’s sleep
The pool, oh so quiet….

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.

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.

24 – 25 May: Hello Tuscany…

Author: Mr A

Location: Barga, Tuscany, Italy

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.

When in doubt ply your customers with Chianti when they visit!

A local artist paints inside to classical music

A wander up to the old part of town and a cafe in a quiet courtyard just couldn’t be resisted.

The self proclaimed unofficial cultural centre of Bargo – Da Aristo di Togneri Lorenzo

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.

Endless picturesque lanes to explore

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.

Not your usual tasting

The nibbles kept on coming

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.

A fine view to wake up to

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.

Plenty of fresh produce to choose from

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 Duomo of Barga – 11th-16th centuries – a good example of Romanesque architecture

Th limestone church was restored in the early 1900s following extensive earthquake damage

Fabulous view from outside the church – twice a year there is a double sunset viewed from here through an archway in the mountain across the valley

A large moth hanging out in town

In the Middle Ages, Barga was known for is manufacture of silk

The further out you ride, the greater the views become, incredible vistas with the mountain ranges looming high over the town

Barga, perched up on the hillside

Pania della Croce, a mountain of the Apuane Alps dominates the skyline

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.

24-27 April: Heading back down the country

Author: Mrs A

Location: Ivinghoe, Bucks, Little Gaddesden, Herts & London UK

Tuesday: Leaving Milton Keynes we headed south, travelling just half an hour to reach our next destination. We settled for the night at a farm in the hamlet of Ivinghoe Aston, close to the rolling hills of the Chilterns. The evenings here are light until about 8.30pm, allowing us a chance to go for a stroll.

Ten kilometres (about 6 miles) later we had crossed beautiful countryside via a bridleway and had explored the village of Ivinghoe. We even managed to pop into the local pub for a quick drink before heading back for dinner.

A bee swarm in the apple orchard at our farm-stay

Many workers surrounding their queen

Quiet lanes in Ivinghoe Aston

Dandelions line our pathway as we walk

Hard to resist a pub with a good reputation

Old cottages in Ivinghoe – few with parking

Mr A strolling through the village of Ivinghoe

Mr A swears a half pint goes down much faster than half-a-pint within a pint

Truffy, outstanding in his field…

Wednesday: The following morning we departed and drove up to Ivinghoe Beacon. Ivinghoe Beacon is a hill standing 233 metres above sea level. It sits within the Ashridge Estate and is managed by the National Trust, but it has great significance historically. In the past, this location was used to send signals from and was also a fort during the Iron Age (around 800 BCE). More recently it has appeared in Harry Potter and Star Wars movies… For us though, it was a spot to enjoy lunch and a few cups of tea as we sheltered from the blustery cold wind and showers. A good day to be behind glass, as we say!

Fabulous views from the beacon

A couple of long distance walks/cycles start from this point

Truffy with dramatic skies

Eventually there was a break in the weather and we drove a short way down the hill towards Dockey Wood. This woodland is famous for its incredible display of bluebells, and my cousin Karen had let me know they were in full bloom after the warm Easter weekend.

We had only driven a few minutes and we spotted a carpet of purple by the side of the road. We quickly pulled over and went in for an explore. It was incredible, and unbeknownst to us, we were in the quieter less visited woodland area – the main display (and crowds) we found were just down the road where the official car park was.

Mr A wanders through the sea of blue

Just breathtaking – set off by the bright green new leaves

A mass of purple

Dizzy with the delicate perfume of the bluebells, we headed on down to our home for the next three nights, parked up on a farm track close to my cousin and her family in Little Gaddesden.

Before long a taxi arrived to take Mr A, my cousin Karen, her husband Iain and I into nearby Berkhamstead. There we caught up with my old school friend Jo and her husband Stuart for a beverage at a local wine bar, The Berkeley. From there we enjoyed a fabulous Thai meal at The Giggling Squid – delicious food and probably the best Thai we have tried in the UK so far.

The years flash on by with nearly 30 years of friendship

Much laughter – L-R: Stuart, Karen and Iain

Mr A finds himself beside a nude….

Thursday: After a relaxing night’s sleep, Iain gave Mr A and I a lift up to the cafe in Ashridge Estate so we could catch up with an old friend of mine from way back, Amanda. We last met up when she was visiting her sister in Sydney Australia, more than 15 years ago. It was great to see her, and we had a stroll through the woodlands, admiring yet more bluebells.

Footpath windings through the wild flowers

Amanda caught between two Andersons

Old friends reunited

Mr & Mrs A – (incidentally, I left my lens cap on this tree trunk, in case you find it!)

Walking back to Karen & Iain’s house via Ashridge House

Mr A and I walked back to Karen’s house through the estate, spotting many deer and enjoying the sunshine as we went.

We’d been back a few moments and I was back in the car with Karen off to visit my aunt while Karen took my uncle to the doctors. It was just enough time for a cup of tea and a tour of the house and garden before heading back for the evening.

Mrs A with auntie Pam and uncle Brian

Friday: Mr A and I hitched a lift into Berkhamsted when Karen was dropping off her daughters, Hannah and Ella to school. From there, we caught a train into London – Mr A heading off to do some shopping, while I went to Hammersmith and Charing Cross Hospital to take part in a focus group about the major airway surgery I had there back in 2014.

After the group I caught up for an hour with Jacky, a lovely lady with iSGS I have met through the support group I run, before heading back across town to meet up with Mr A, and some more friends at a pub near Warren Street.

L-R: Karen, Mrs A, Mr A, Martin, Karen’s sister, Chris

It was a fun catch up, with Martin (who was best man at our wedding 17 years ago) plus friends from Australia, Karen and Chris, who are staying with Karen’s sister near Greenwich.

It wasn’t a late night though, we were back on the train to Berkhamsted by 6.30pm and back tucked up in Truffy for the night by 9.30pm. A great end to the week.

Saturday: It was time to say goodbye to Karen and Iain and the girls, and continue our journey south. We really appreciate the hospitality we’ve been shown by the whole family.

L-R: Ella, Ryan, Merryn, Karen, Iain, Hannah, Mrs A

Mr A and I are both are loving rekindling old friendships and making new friends on our travels, and particularly cherish the time such as this with family who are also good friends. I hope we are leaving each time with stronger relationships and a better understanding of one another and look forward to spending more time together when we’re back from our European travels.

25-30 March: Ticking off our final days in Australia

Author: Mrs A

Location: Sydney, Australia

We’ve had a busy week getting our final tasks completed in Sydney and saying a few farewells to our lovely friends.

Monday night saw us treated to an absolute gastronomic feast, delicious wine and food prepared by friends Cathy and Scott and hosted by Donna and Andy – we were incredibly spoilt, and it was so great to see them.

Tuesday was a little dusty after the excesses of the night before, but I headed off early to see my Gastroenterologist in St Leonards to hopefully be signed off to continue travelling. Thankfully I got the tick of approval, and Dr Smith also organised for all my notes to be sent across for me to take to the UK, should anything go awry.

In the afternoon, I had a bouncy blow dry to add that little bit of glamour before we headed to drinks with friends at King Street Wharf. Despite it being a Tuesday night we had a great turnout with about 17 friends joining us.

A little bit of bounce….

Wednesday was a great day to pack – we both are currently Qantas Frequent Flyer Silver – probably for the last time ever, so have plenty of luggage allowance – 42kg each! Still it was a good practice to get it organised and bags weighed in advance to settle any nerves.

In the evening we met up with more friends, Clive, Aisha, John and Eveliene for dinner and drinks in Circular Quay.

Thursday was the birthday of one of our kind hosts, Jenny, who is currently working her socks off closing down one of her framing shops, and upgrading another. She came home to a well deserved glass of champagne before we all jumped in an Uber and headed to a fabulous Asian restaurant in Coogee Beach, Sugarcane. Highly recommended if you’re looking for somewhere new to eat and are in the area.

After a crazy week, Friday was much quieter. Mr A and I went into the city for a few final tasks (Mark’s shaver broke, but thankfully within warranty and exchanged swiftly) and I had my final medical procedure – steroid injections into my airway. They’ve been working really well, and my Otolaryngologist (ENT, head and neck surgeon) showed me he was delighted with how the scar tissue is drawing back and opening out my trachea. We just hope it keeps on working. Again, he has given me notes and videos to take with me to the UK.

We had a quiet night with Jenny and David, all of us exhausted for our own reasons after a busy week.

Saturday morning finally arrived, and after a walk around the neighbourhood we packed up for real and did a final weigh in – thankfully all within our allowance still, despite a total of eleven bags.

Our Uber XL arrived on time and we loaded up the boot….

All piled up outside Jenny and David’s apartment block

We are finally off!

Enjoying the final breaths of Sydney air for a while

We have checked in seven bags, and are hoping we will see seven again at the other end. We have a kind friend who is driving through the early hours of Sunday morning in the UK to pick us up…not sure we are prepared for the 2 degrees centigrade forecast for our arrival though!

This will be the first time in 20 years we will spend more time in Europe than here!

Farewell Australia!

22-24 March: Meanwhile…in Bris-Vegas….

Author: Mrs A

Location: Brisbane, Australia

While Mr A was off on his explorations on two wheels, I was off to Brisbane. Regular followers of our adventures might recall that I met with a couple of otolaryngologists (ear, nose, throat, head and neck doctors) last September as we passed through Brisbane on our journey back to Sydney. They invited me to talk at their conference this year and had found sponsorship for my flights and accomodation from a pharmaceutical company, Smiths Medical.

This was the weekend of the event. I flew up to Brisbane, took the train into the city and over to my hotel at North Quay. Checking in, the clerk proudly announced I had a room upgrade to a river view. And indeed I did. A fine view from my window, should I be hanging around to look.

Brisbane knows how to do a good sunset!

I had a quiet Friday night, opting for a laksa in a local food court before returning to my room for some final tweaks on my presentation.

Saturday morning was a bright and early one. I woke regularly throughout the night having panics that I had slept through my presentation, and finally got up about 5.30am. The conference centre was on the other side of the Brisbane River, so I headed over in the hope of attending some interesting sounding sessions starting at 7am. I met up with Dr Liz Hodge and Dr Hannah Burns, relieved to see some friendly faces, and Dr Daniel Novakovic, my surgeon in Sydney was opening the morning’s session with the first presentation.

My venue for the day

The conference

Throughout the day I chatted with a few doctors and a number of industry providers – it was really interesting to understand more about their world. Before long it was time to present.

I was part of the ‘Adult and Paediatric Airway Stenosis’ session, with five other presenters. Third one up, I was the only non-doctor on stage. I was really pleased with the turn out with standing room only in the auditorium. Feedback suggests it went well, with several doctors following up with me afterwards to ask more questions and thank me for the presentation.

As the doctors disappeared to their AGM and gala dinner, I headed back to the hotel to shower and change. Libby and Phil (friends we made this time last year through our common ownership of Zone caravans), had invited me to join them for dinner. They collected me and we headed up to Brisbane’s highest point, Mount Coot-tha. It’s a popular location for its lookout and walks, and it was busy with people admiring the night view of Brisbane, a bushy haven just 7km from the CBD. Mr A and I visited last Easter, barely able to see the city through the torrential rain! It was much drier and clearer this evening.

We were joined by more Zoners, Greg and Therese, and Darryl and Natalie. We had a lovely evening – predominantly the company – the restaurant seemed to be having some issues cooking, and our food arrived 90 minutes after we ordered it! The views were spectacular, and we took a moment before heading home to pick out the sights we could recognise.

L-R: Phil, Libby, Catherine, Therese, Darryl, Natalie, Greg

The Brisbane city skyline sparking under a nearly full moon

After a good night’s sleep I awoke on Sunday to another fine day. I packed up my case and left it with reception while I headed over to the Queensland Gallery of Modern Art. A 34 degrees centigrade day, it was ideal for escaping the heat, a beautiful building with some inspirational exhibits.

Love the vibrancy of these landscapes by Aboriginal artists

Before long it was time to head to lunch. I had booked a table at Chu The Phat, an Asian restaurant, for a meeting of Queensland ladies who, like me, suffer from idiopathic subglottic stenosis. Dr Burns and Dr Hodge joined us for half an hour before they headed to a networking lunch, and then we enjoyed a fun couple of hours sharing our stories and chatting over food. I cannot emphasise how good it is to meet with people who understand what you’re going through, particularly when it’s a rare disease. I was particularly excited to meet Joanne, with whom I have exchanged messages with for around 10 years and never met – she was one of the first members in my now 3,300+ people strong support group.

L-R: Lana, Dr Hannah Burns, Dr Liz Hodges – listening to our stories

L-R: Rosemary and Tammy

L-R: Kerry, Lana, Tammy, Catherine, Christine, Rosemary and Joanne

I flew back to Sydney later that evening – the flight leaving late plus the hour’s time difference meaning I finally crawled into bed around midnight. A great weekend!