Category: Idiopathic Subglottic Stenosis

Posted on

23 October-5 December: Friends, wildlife, packing, selling and a shock visit to hospital

Author: Mrs A

Location: Sydney, Australia

Time has just flown since we returned from our travels, and no, we have not just been spending the summer lazing by the pool (as our property agent suggested!). Untangling 25 years’ of life in Australia is as involved as you might imagine!

Over the last month we have calmed down our social life a little so we weren’t out every night, and installed a little more balance. Every day we manage to take a small step towards our move across the world, while bing kind to ourselves as well, with breaks and walks.

We have been carefully assessing our possessions and consolidating, selling things of value (farewell to our beloved double fibreglass kayak and Mark’s Surly bike), and giving away things of lesser value (various pieces of camping kit, a multitude of Australian power extension leads and plugs and more). I have become quite adept at using Facebook’s Marketplace, with most things snapped up within minutes of advertising them (as long as there is no charge!). It is certainly preferable to putting things into landfill.

We have broken up our days with outings to local areas of natural beauty, finding it a great way to turn off those stress receptors and think about something else. We have of course enjoyed a few catch ups with friends along the way.

Current day Sydney is quite different to the one we left behind. Lockdowns and a huge increase in working from home has meant the CBD is incredibly quiet, our old favourite lunchtime haunts sitting largely empty with greatly reduced menus. It is so sad. Meanwhile, the suburbs are busy, with rarely a quiet time in the neighbourhood cafes and the car parks straining to keep up with the amount of traffic.

Last week saw me off to see my Otolaryngologist here in Sydney for some more injections in my airway, to treat my iSGS. It didn’t quite go as planned. A laryngology fellow who was training with my doctor ended up causing a bruise and some bleeding which resulted in inflammation. Later that night it got particularly swollen and mostly blocked my airway – we ended up taking a drive in the early hours of the morning to the nearby hospital emergency department.

Thankfully after being admitted to hospital for two days of treatment and observation, the swelling decreased, and I was allowed home to continue my recovery. For a moment there I thought I might not make the flight back to the UK after all! I’m pleased to report my breathing has since gone from strength to strength, so finger’s crossed it stays like this so I can avoid an operation before we fly….just 8 more weeks!

I’ve shared some photos of our past month’s adventures below – feel free to whizz through them if it all gets a bit overwhelming!

*

Curl Curl Lagoon – our local park just footsteps from our front door, and a great place to wind down with nature….

A White Faced Heron captures a Yellow Bellied Three-toed Burying Skink (that’s a mouthful!)
The Skink tries valiantly to escape, but becomes dinner in a snap
A Magpie Lark sitting on its mud nest over the lagoon
A characterful female Superb Fairywren – what she lacks in blue she makes up for in attitude
She leaps from her bough to snatch a snack mid air
A Silvereye sings melodiously from the top of a tree

*

Dee Why – a walk and dinner with friends Bill and Olga

Making our way along the cliff top
One of the resident Peregrine Falcons swoops over, calling loudly
A pair of Peregrine Falcons
Stunning views out to sea
Catherine and Olga enjoying dinner
Mr A and Bill
A final evening view towards Longreef

*

Curlew Camp Artist’s Walk, Mosman, Sydney – a new walk to us! Just down the road from where we were meeting friends for lunch and close to where we got married (Taronga Zoo)

A lounging lizard? An Eastern Water Dragon up on a tree
Mr A picking his way along through the bush
The story of the camp

Lunch at The Fernery, Mosman, with friends Andy and Donna

Replete post lunch

*

Long, lazy lunch with friends in Manly at Busta (Italian restaurant)

Love how all the heads are on different angles! L-R Aisha, John, Eveliene, Clive, Mr A, Mrs A
John and Eveliene excited to be out after a long lockdown!

*

Long Reef headland – a few beaches up the coast from where we live

Looking back along the beaches towards Manly
Sooty Oystercatcher digging up pipis
Not just oysters!

*

Back at Curl Curl Lagoon

A Dusky Moorhen protects her young brood
A newly hatched fluff-ball looking rather vulnerable
A pair of New Holland Honeyeaters
A pair of Superb Fairywrens
Pacific Black Duck

And meanwhile, back at home….

Princess Tassie enjoying the sunshine

*

Manly Dam – just 11 minutes from home and a stunning bushland haven

Brush Turkey roosting in a tree
Eastern Water Dragon
Little Wattlebird
An angry freshwater Yabbie (lobster) emerges from the undergrowth
Brown Thornbill
Eastern Whipbird
Eastern Whipbird
Olive backed Oriole
Curl Curl Falls – last visited with mum!

*

Bronte with friends Jenny and David – just around the corner from my first ever accomodation in Sydney back in 1999!

Champagne on the balcony, braving a stiff breeze
Dinner at Sugarcane in Coogee

*

Rainy morning walk around the Narrabeen Lakes, about 20 minutes up the coast from home

A gorgeous non-venomous Diamond Python passively makes its way through the undergrowth
Variegated Fairywren
Good little hunter…some sort of black insect on today’s menu
A tiny seed-eating Red-browed Firetail
A Sulphur Crested Cockatoo emerges from her nest hole
Juvenile male (non breeding) Fairywren

*

Weekend in Newcastle, NSW with friends Chris and Karen

Drinks at Styx Brewery
Hiking in Glenrock State Conservation Area
Karen and Chris
Views down to Dudley Beach
Mr & Mrs A
Gin (and Absinthe) tasting at Earp Distilling Co
Gin cocktails and nibbles platters
Sunday morning in historic Morpeth
Wine tasting and lunch at Boydell’s

*

A grey Saturday morning’s kayak on Sydney Harbour with friend Cindy

Cindy hired a kayak from The Spit
Our Advanced Elements inflatable double kayak’s maiden voyage on Sydney Harbour

*

Warriewood Wetlands – a rainy afternoon walk, 25 mins drive from home

Who doesn’t love a Laughing Kookaburra?
Great weather for ducks
We have waited a long time to spot one of these, a Bellbird

*

A hospital room with a view, herbal tea and healthy food…if only I could breathe and eat at the same time! Unexpected two days at the new Northern Beaches Hospital…

*

Breathing improving – a walk along the coast from North Curl Curl to Dee Why…

Australian Kestrel on top of the surf club roof is an auspicious welcome to the walk
A humid, misty day, the lizards and skinks were out in force soaking up the warmth
A pair of Red-whiskered Bulbuls – not native to Australia – descended from those introduced in the 1880s
Magnificent Peregrine Falcon on the cliffs. They mostly feed on feral Rock Pigeons and Silver Gulls – they’ve been clocked swooping at 300km/hr!
Superb Fairywrens don’t mind the mist – no wind means it’s a great time to sing

*

Morning walk through Ku-ring-gai Wildflower Garden, Terry Hills

Eastern Yellow Robin
Variegated Fairywren
Golden Whistler
Spider for lunch – yum! Golden Whistler
Pacific Koel – a migratory cuckoo that is a noisy summer bird
Pacific Koel

*

If you have made it this far down the page, then thank you! Will try to leave it less time before our next post!

*

Posted on

11-16 May: We’re heading “up the Track”

Author: Mr A

Location: Whyalla/Quorn, Ikara-Flinders Ranges

Our South Australia sojourn is drawing to an end after four months, and tropical central Queensland here we come! Our plan is to “head up the track”, as the saying goes when tackling an iconic outback adventure: the Birdsville Track. The track starts in South Australia’s arid north, and winds its way through three deserts before spitting you out, very dusty and thirsty, at the Birdsville Pub a few kilometres over the border in the central west of Queensland. It will be an adventure for sure.

But first we had a bunch of jobs to get done in the small town of Whyalla, where Catherine was once again going to fly back to Adelaide for steroid injections into her airway, a visit to the hairdressers and some retail therapy. I was being looked after by Tassie, and getting some local medical stuff done. Then it was a matter of cramming as much fresh food into the van and car as we could store. 1,700 km lies between us and our next supermarket in Queensland! Yup…thats a long way between fresh vegetables!

The steel works (top left) and the coastal walkway in Whyalla
Very rarely do we need to wear a mask these days but they are compulsory when flying, Top left, early morning at Whyalla airport, bottom left Whyalla from the skies
Catherine farewells the doctor and nurse team in Adelaide – primarily laryngologists Dr Theo and Dr Alice (right). She hopes to do some research with them later this year.
Later that day….post haircut and bouncy blow dry, a night out with friend of 35+ years, Ali ?
Friday farewell lunch with two of the Adelaide ladies from Catherine’s idiopathic subglottic stenosis support group, Carmel and Heather.

Whyalla is a town that has been struggling for years under threat of its biggest employer, the steel mill, closing down. Today the serious crime squad in London announced it was opening an investigation into the mill’s owner, but despite this cloud, everyone was super friendly and a strong sense of community was evident. But, we couldn’t wait to hit the road.

After six weeks on the very flat Eyre Peninsula, it was great to see the country rising up into jagged peaks in front of us This was the southern end of the Flinders Ranges, a semi-arid country containing some of Australia’s most important fossils and evidence of early human history. We had made a trip here back in 2004, but it was January and crazy hot. Now daytime temperatures are pleasant in the high teens and low 20s, and nights in single figures that have us both fighting over a snuggle with our hot water cat in bed!

Our first destination was the small settlement of Quorn, a town made famous by having for many years both the main east to west and south to north railroads passing through it. During World War 2, around 40 trains a day passed through the town carrying our troops up to defend Darwin and on from there on to fight against the Japanese in the Papua-New Guinea campaign. Nowadays its a very pleasant stop on the tourist route up into the ranges. It even has a tea shop serving a range of brews in English china cups. So civilised.

Quorn high street
Fine bone china teacups made in England
Quorn’s main street has stood relatively still for the past 100+ years
Quorn Railway Station
Wattle Bird
A beautiful Mallee Ringneck Parrot
A gaggle of White-plumed Honeyeaters
An Australian Magpie on our campground
Tassie hunting interesting smells on an accompanied walk

We had managed to snare a cancellation on the only caravan park in town. It is a really busy season up here, and we had heard from friends who stayed locally that there was an outdoor movie shown every evening at sunset. We dressed up warm and headed out. The film was projected onto the side of an old silo, very atmospheric, and had some really interesting content, including from an elder of one of the First Nation groups to live on this ancient land. So inspiring to to see a community pulling a project together like this.

Fifty seconds until the show starts – the sun has set and the new moon risen
Some of the projections during the 30 minute show

Tomorrow we head further up into the ranges and a three night stay on a sheep station, and then from there up to the end of the tarmac and the start of 519km of the Birdsville Track.

It may be a while before we get enough signal to upload another post, hence the heads up on our plans over the next few weeks. It would be an unusual plan that survives contact with the Outback, so our fingers are crossed, but we think we have prepared well enough. The wine cellar is full, the fridge groaning, and the tanks full.

Posted on

24-30 March: Wildlife spotting in Adelaide

Author: Mrs A

Location: Coromandel Valley, Adelaide Hills and Adelaide, South Australia

After the dust storms and dry environment of the Riverland it was a relief to pull up at our friends’ house in the Adelaide foothills, appreciating all the more the lush grass, and tenderly cared for fruit and vegetables. Leaving Berri, we had a big day’s driving across country.

Kim and Mike live in the Coromandel Valley. The valley was named after a ship (The Coromandel) from which a number of the crew deserted in 1837. The deserters hiked up into the hills, climbed a tree and watched until the ship left port, after which they surrendered to the local Governor and became free settlers.

Prior to the arrival of and subsequent settlement by these sailors, the area was home to the Kaurna people. They lived along the creeks and rivers, actively farming – fishing, hunting animals and harvesting native seeds, vegetables and fruits. We acknowledge and pay our respects to the Kaurna people, the traditional custodians whose ancestral lands we spent time on. We acknowledge the deep feelings of attachment and relationship of the Kaurna people to country and we respect and value their past, present and ongoing connection to the land and cultural beliefs.

A Red Wattlebird perches in the tree overlooking Kim and Mike’s garden

Not far from Coromandel Valley is Belair National Park. The Kaurna people called it Piradi, which means baldness. This was the description of the area when seen from the plains – the location where the city of Adelaide now sits. The Aboriginal population used to actively farm this area, a practice known as ‘fire-stick burning’ – clearing the vegetation to encourage grazing animals, making them easier to hunt. It also spurred the growth of understory plants such as bush potatoes and grasses which were harvested and used in cooking and flour making.

It was declared a National Park in 1892 and is South Australia’s oldest park. Since the 1920s, only native plantings have been allowed, resulting in a valuable haven for native birds and wildlife. Mr A and I were anxious to get out walking, and Kim kindly obliged us by guiding us on one of her favourite circuits in the park. Unlike many Australian national parks, dogs are allowed here, as long as they are kept on a lead, so we were joined by furry friends, Cooper and Rikki.

The rest of my birthday present had been delivered to our friends here – a monopod (used to stabilise the long lens when you’re trying to keep ultra still when photographing) and a fancy sounding MonoGimbal which connects the monopod to the camera. I also had a camouflage coat for my lens – to make it blend into the bush a little better.

Nothing to see here! Photographing a koala and birds, the monopod takes the weight and allows me to concentrate on framing and focusing!

Our 6km walk was the perfect opportunity for me to practice putting it on and I had some great subjects to practice on, with a few birds about in the cool morning, and the first koala we’ve seen since getting back to Australia turning up on cue!

Crimson Rosella coming out of its nesting hole in a hollow branch
A Red Wattlebird showing off its acrobatic prowess – these honeyeaters love flower nectar but also supplement their diet with insects
This koala has been tagged
Gorgeous – koalas are not bears, but more closely related to wombats
Another tree holds a nest site for a pair of beautiful pink and grey galahs

I took every opportunity over our visit to practice my photography, not too hard given the number of interesting walks and bushy areas around.

A New Holland Honeyeater – these little birds breed whenever there are nectar producing flowers in bloom, so despite being Autumn, they were busy flitting around courting and too preoccupied to notice me spying!
A Laughing Kookaburra – these are actually Australia’s largest kingfisher. We’ve seen them eat fish quite frequently (including goldfish from our pond) but they are also partial to frogs, mice and even snakes.
Galahs mostly eat seeds, but they like to chew on wood to keep their beaks sharp – usually close to a nesting hollow to indicate it is occupied.
Red Browed Finches flitting through the reeds beside the river
More honeyeaters
May I share your perch?

One particularly memorable walk took us in a circuit along the Sturt River valley and climbed up through the hills. It was a beautifully cool day and a novelty to wrap up warm. Known as Warri Parri in the native language (windy place by the river), the river valley was traditionally used as a travel corridor by the Kair a people linking the hills with the sea. The population would spend the cooler months on the plains, before heading up via this route in the hotter summer months to spend time in the hills. The riverside path we tracked along followed some of this route.

A beautiful sense of calm and serenity alongside this river
Feet have trodden this path for thousands of years
Cooper and Rikki probably ran three times the distance as us on this hike!
The water quality is being actively managed – there is far less water than in the past

Sturt Gorge Recreation Park is the second biggest park around Adelaide after Belair National Park. How fortunate for our friends to have both locations literally on their doorstep.

Our friend and Kim’s daughter, Ali came to stay on Saturday night with one of her sons, Lewis. The following morning I joined Ali, Lewis and another friend, Nicky (Ali’s not-at-all-wicked stepmother!) at an Adventure Room. We were handcuffed to bars in a locked room and spent an hour solving puzzles and unlocking padlocks. Much fun was had and we made it out with 40 seconds to spare!

The crack detective team

Later, I joined Mr A as we caught up for drinks and nibbles with Nicky’s husband, and long time friend (and amazing musician and film maker) Pete. A perfect Sunday!

Our time in the city concluded with another set of tracheal injections for me, followed by a lunch catch up with some local patients who sadly share the same airway disease as me and who are members of the support group I run. As always it was an absolute delight to meet these lovely ladies, an opportunity to share stories and our experiences along our journey.

L-R: Heather, Julie, Fay, Catherine and Carmen

It was a great chance to shake out the dust from our lives, reset and do all those things that only a large town or city can provide, but we were soon ready to be on our way. The many walks, laughs, fine wines and dinners shared with Kim and Mike greatly enjoyed and appreciated, we said our farewells, not knowing when or indeed if we will ever pass this way again.

Posted on

22-27 January: The Barossa Valley

Author: Mr A

Location: Tanunda, Barossa Valley, South Australia

When Australians talk about wine brands they love, it’s pretty much guaranteed that one or more they mention will be grown in the Barossa Valley, where we just spent the last five days. We have a friend there who invited us to come and park up on her driveway in the small town of Tanunda, which is nestled pretty much bang in the middle of the winemaking action.

Our generous hosts, Phil and Lindsay

The area we now called the Barossa has been home to the Peramangk, Ngadjuri and Kaurna people for thousands of years, and when South Australia was formed as a state in 1834, it was the only one who recognised the prior occupants of the land as having a right to occupy it. However, this document was subsequently ignored by the those who followed and the First Australians were dispossessed of land by the waves of European settlers who followed. Decimated by small pox and other diseases, there is little historical record of these first peoples thereafter.

As Australia Day fell while we were in the Barossa, it was a timely reminder of how the various factions in Australian society are still trying to agree on the part Europeans played in the crippling of the world‘s longest continuous culture, in what are called the “history wars”. We watched on the news protestors who think the day should be moved, and those who think we should just “move on”. It‘s a complicated topic, but Catherine and I continue to be shocked at the level of racism that we still witness here in Australia, and in fact seems to have been given legitimate expression by the election of a President of the US who throughout his presidency displayed the behaviour and spoke the words of a racist. Let’s hope those voices are now stilled a little with the regime change there.

We were taken out on a couple of brilliant wine tastings, but also sampled some of the fantastic produce that is coming from the area. Even the local pub in town served amazing food!

Wagyu Beef schnitzel was huge and melt in the mouth at The Clubhouse
Delicious wines at Langmeil Winery, home to the oldest Shiraz Vineyard

Then we had dinner at a place called Harvest Kitchen, famous for its “Eat Like a Barossan” option on the menu. Of course we did! Wow..such great food.

Harvest Kitchen is set in beautiful surrounds

The family we were staying with was a big blended family by today’s measure, six kids and two parents, and what a reminder it was of how tough our grandparents must have had it when such a size was often the norm. It was brilliant seeing how they all worked together to keep the home running, with rosters posted on the fridge for everything.

Family roster and weekly menu plan
We cooked a chicken Penang curry one night – loved the lively dinner table discussions
Bertie the blue eyed rag doll cat, Prince the Eclectus Parrot (friend to Rosie, not pictured) and Tikka the wine loving parrot all add colour to this eclectic household

There was a real team spirit in the house, and we felt privileged to have been welcomed into this family. Australia Day was also the 7th birthday of one of the kids, and the 10th birthday of a cousin, and of course they were celebrated in style. I didn’t hear a cross word all day between the kids! Amazing.

Clockwise: Bertie the rag doll cat, birthday boy cousin Lewis, Elija looking suave, birthday boy Matthew bouncing on his trampoline, Lindsay and Phil, super parents
Clockwise: Grandpa Pete and Evan, Mrs A, Lindsay and Ali, and again with Phil’s friend Matthew, and finally Mrs A and Pete

Unfortunately we were beaten back inside by the heat on a few days, it was over 40 degrees on one of them, so it was relief when the mercury dropped and we could get out on our bikes to explore. We followed the Barossa Trail, a way-marked tarmac path winding its way around though many of the wineries, and had a great lunch before heading back. The path was a little like a roller coaster with around 440 metres of climbing (Strava link), and ours legs were feeling pretty wobbly by the time we got back. There’s a lot of work to do to get us back bike fit!

Mrs A whizzing down a welcome descent
We started the day dressed for the cool but soon stripped off the layers
A beautiful avenue of eucalyptus trees
Of course there was a wine sculpture
A dead tree that could almost be a sculpture itself

Well, it was time to move on, so we packed up and once again said our goodbyes, although we are relieved to know our return visit to Adelaide is scheduled in our future, as Catherine will need to be back for some more medical treatment in early March. In fact she managed a quick catch up with one of the people in the support group she runs who lived locally. Another life made a bit easier by Catherine’s tireless work in helping out those who suffer from the same rare disease as her.

Catherine and Sam
Posted on

19-24 October: Feeling autumnal in the south-east of England

Author: Mrs A

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).

Setting off along a lane

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.

The Devil’s Bridge

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.

The Alford Arms was doing a roaring trade on this Monday lunchtime
Karen and Catherine – more than four decades of friendship

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.

The intrepid walkers
Cousins – still the same two little girls who used to play together on family occasions growing up
Looking out towards Ashridge, hidden behind the trees
Beautifully disguised in the woodland copse, this pair of does certainly spotted us long before we spied them

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.

Mr A enjoying the sunshine in a sheltered nook, where my grandparents used to picnic too. He had just had his eye pressures checked and all is healthy – great news!
A picnic lunch on the seafront
Ladybirds were out in force on this sunny afternoon
St Leonards Gardens, originally part of a farm in the 1700s
Mum and Barry have a rest and enjoy the view
The sunlight in the leaves lights up the park
North Lodge Pay Gate was built in the early 1800s ,when St Leonards on Sea was being developed around a burgeoning tourism industry

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.

One minute until the next train and I am the only person on the platform

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.

Charing Cross Hospital in Hammersmith sits alongside a quiet haven in London, the Margravine Cemetery a peaceful green space
The fearless grey squirrels rule the roost in the cemetery
Pretending to be a tree trunk

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!).

Posted on

18-24 August: Stormy in Devon

Author: Mrs A

Location: Headon Farm, Holsworthy, Devon

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.

The wildflowers in the hedgerows appreciate the return of the sunshine after the torrential rain
A typical single lane road, looking more like a footpath than something cars drive on
Past historic farms…
The wild skies contrasting with the lush grass

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.

Like Tavistock, Holsworthy has a small Pannier Market with little shops and a great cheesemonger

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.

Feeling deflated on the way to taste wine

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.

York House Gardens with their amazing statues
Orleans House with its octagonal room, the riverside and a lovely looking pub, The White Swan

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.

Remembering to appreciate to fresher temperatures that we craved in Australia
Absolutely delicious food – a shared platter of roasted meat and vegetables
An entree of Cornish mussels for Mr A and Cornish Mackerel for Mrs A

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!

Posted on

14-17 March: Being world travellers in a Covid-19 world

Author: Mrs A

Location: London and Little Gaddesden, UK

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.

An almost deserted platform at Berkhamstead station

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.

A catch up over a drink at a local pub
Coffee for mum, soda water for me and lots of hand washing!
Lovely spring colours belying the cautious overtones

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!

Whitestone Pond – mum recalls skidding across this with her sister when it froze over during winter
Mum remembering her time at Hampstead Heath
Flowers frame our view of central London

We enjoyed delicious vegan lunch in a bright little cafe then it was down to the hospital.

Delicious food at Ginger and White cafe
Royal Free Hospital, Hampstead

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.

Posted on

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.

Posted on

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.

Posted on

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.

Privacy Policy Proudly powered by WordPress