2026 Festival Tour – What a Month! (Part 2)

Antigone are I just back from our 2026 festival tour.  It didn’t quite match the plan.

The plan

Travelling with our caravan and a support worker:

• 10-13 April – Turramurra Folk Music Camp
• 20-22 March – Yackandandah Folk Festival
• 23-29 March – Blue Mountains
• 30 March – 6 April – Canberra and National Folk Festival
• 7-10 April – return to Victoria, to Bacchus Marsh
• 10-13 April – Turramurra Folk Music Camp

The Reality

The reality included:

(Part 1)

• a broken caravan,
• a stroke,
• Blue Mountains visit cancelled,
• an unusual accommodation proposal,
• driving to Canberra without a clear plan of where we would stay,

(Part 2)

• another stroke,
• a new used caravan,
• hasty caravan modifications to make it accessible for Antigone,
• a lovely bike ride on the Great Victorian Rail Trail near Tallarook,
• our garage door wouldn’t open with our new Avan in our driveway.

It was not a boring tour.

Meeting our hosts

On Sunday 29 March, we arrived in Canberra just before dark.  We were in Flynn, at the home of a couple selling an Avan who we’d never met before.  John and Helen were selling their Avan camper due to health issues and we were considering buying it.  As Antigone had reduced mobility after a small stroke the previous weekend, we weren’t sure if see if she was still capable of caravanning.  We had organised to stay in the caravan for a couple of nights in John and Helen’s driveway to assess whether caravanning in general would work for us and that caravan specifically.

We arrived late in the day and were invited inside for a cuppa.  There were several steps up to the front door, and more steps inside to get to the family room where we had our cuppa.  Getting Antigone up those steps was very slow and challenging.  By the time we’d had a drink it was dark outside. 

With Antigone’s mobility so limited, it did not make sense to go outside and explore the caravan in the dark.  John and Helen had made up a bed for us in their house.  We would have plenty of time to look at the caravan the next day.  

Small Strokes

Antigone has had many small strokes since 2003 – twenty or so.  Usually, symptoms resolve within 24 hours.  Every stroke means some part of the brain no longer functions, but one never knows what will be affected.  Sometimes, there is an obvious new cognitive deficit and sometimes not.  After each stroke, it takes a period of days or weeks to have a clear picture of what the new baseline is.

The Yackandandah stroke had manifested primarily in leaning to the right and being unable to straighten.  During some days since, Antigone had had a lean to the right.  On Sunday 29 March, she had a lean to the left.  She had also been more sleepy than usual throughout the day and more limited in her mobility.

During that night, I realised the lean to the left probably indicated another stroke.  When we got up during the night, Antigone was unable to sit without back support.  That was new.  (The stroke must have happened during Saturday night, while in the Wodonga motel.)  I rose early and planned for another hospital visit.  An awkward situation in the home of people we had only just met.

Another hospital

I packed a bag with the things Antigone might need – hospital records, medicines (which they like you to bring but they prefer not to use), toiletries, slippers, etc.  As soon as John rose, I explained about Antigone’s second stroke and we headed for Canberra North Hospital, about 15 minutes from Flynn.

Hospitals and Type 1 Diabetes (T1D)

Hospitals are a dangerous place for people with T1D who require insulin injections several times every day.  Insulin requirements vary greatly based on such factors as: food eaten, exercise, body trauma (increased cortisol in the body means more insulin is needed), steroid medications (which also increase cortisol in the body).  In hospital, with new body trauma, different diet, and less exercise, the ‘normal’ insulin regime is often inappropriate.

Nurses manage patients most of the time, and they give medications, but nurses are not allowed to make decisions about medications.  Doctors must be consulted about insulin dose changes (titration), and getting decisions from doctors can take hours.  These delays prevent timely action about insulin and blood glucose management.  Getting appropriate insulin can feel like a constant battle.

Since a particularly bad hospital experience in 2022, we have managed this situation by clearly stating to hospitals on admission that we welcome their assistance with the suspected stroke, fracture or other presenting condition, but we do not authorise the hospital to take over diabetes management.  (We retain decision-making and we advise the hospital about insulin etc. for their records.)  That announcement is typically greeted with surprise, followed by acceptance, and often statements from emergency department doctors that it seems a very sensible approach.

This year, at two hospitals, our T1D approach has not been accepted – possibly due to hospitals now being fully digital in their record-keeping – the digital systems require all boxes to be filled in.

North Canberra Hospital

The neurology consultant in North Canberra Hospital said he thought our approach made good sense and he was happy with that if the hospital could accommodate it.  Unfortunately, the hospital could not accommodate it.  Antigone had been on steroid medications (meaning more insulin needed) since her January 26 hospitalisation, gradually weaning off with her last dose on the day she presented at North Canberra Hospital (meaning an unknown reduction in insulin was now needed).  Her insulin regime had changed daily during the previous week and there was no ‘normal’ to advise the hospital.  They needed something to write in their boxes, so I erred on the side of too little insulin, as too much insulin presents more immediate dangers than too little.

Antigone was admitted to the stroke ward.  The insulin regime was not right and could not be flexibly adjusted.  As a result, Antigone’s blood glucose level (BGL) was too high for most of her 3-day stay.

At one stage, a nurse identified that Antigone’s long-acting insulin was past its expiry date.  The nurse ordered more from the hospital pharmacy.  During a recent hospital stay, Antigone’s morning long-acting insulin was delayed until 4pm due to hospital processes.  I asked how long it would take to get it from the pharmacy.  ‘15 minutes’ I was told.  I said if she hadn’t had it with 30 minutes, I would administer it from the expired insulin pen.  30 minutes later it had not arrived, so I gave her ‘expired’ insulin.  The nurse was horrified.  I explained that drugs don’t suddenly change overnight when a date is reached.

Antigone had a  CT scan, then an MRI (rather faster than we are used to in Melbourne).  The neurologist showed us two white spots indicating two strokes within the past 10 days.  They were symmetrically located on either side of the forebrain. 

As well as the medical team, Antigone had to be seen by a speech therapist (speechie), a physiotherapist (physio) and an occupational therapist (OT).  The physio and OT typically checked in daily, generally arriving when Antigone was too sleepy to assess.  They had to be comfortable with her safety prior to discharge.  They were not comfortable, thinking her reduced mobility meant a high risk of falls.

I spent mornings with Antigone and support worker Catherine was with her during the afternoons.   Antigone’s old friend Pamela Kinnear (from 40 years ago at The House of the Gentle Bunyip) came to visit 2-3 times.  One afternoon, Antigone, Pamela and Catherine had a lovely singing session.  I was sorry to have missed it.

After the confirmed diagnosis, nothing changed in the hospital.  Each day, the physio expressed concern about Antigone’s falls risk and each day was another day with too-high BGLs.  By late Wednesday, I made it clear that we wanted Antigone discharged on Thursday despite the physio’s discomfort and concerns.  (I kept quiet about being discharged to go to a festival and stay in a caravan she had never been in before.)

Meanwhile, the caravan assessment and planning continues

I stayed in the caravan the next three nights and Catherine stayed in the house.  With Antigone’s encouragement, I bought the caravan.  I organised electric brakes for the car and hired a lifting machine and mobile commode to assist with managing camping at the festival.  We also borrowed a camp bed from John and Helen to set up in the caravan annex, so Antigone would not need to climb up and down steps to nap during the day.

On Wednesday, Catherine set up her tent at EPIC – the folk festival site.  Seeing the accessible camping area filling up, I returned to Flynn that night and told John and Helen I was going to take the caravan to EPIC then rather than wait until Thursday.  (Mornings needed to be reserved for the hospital to be available for doctors’ rounds, the timing of which is never known.)  John and Helen insisted on coming and helping me set up the caravan.  They clearly had a mix of nostalgia and grief about parting with their caravan, as well as kindness in their offer.

Thursday morning our focus was on organising for discharge, which always seems to take a long time.  We left in the afternoon and headed to EPIC for the festival, which formally began on Thursday evening.

National Folk Festival

Catherine and Antigone headed into the entertainment area for dinner and gigs while I built steps and a handrail for accessing the caravan.  I had arranged to get timber and the tools I would need for the job.  Caravan access was ready by around 11pm.

Helping Antigone in and out of the caravan was a challenge at first.  After a few days she was able to come down on her own.

Getting a hospital-non-approved discharge was a good decision.  Antigone moved better with more movement at the festival.  We got her BGLs under control.  The annex bed worked well for daytime naps. 

Nancy, our yellow caravan, had not made it to the National Folk Festival this year, but it had for the previous 20 years.  And this year it made it into the festival program, as had our tandem bike.

We had fun.  A highlight was dancing together at a Klezmer dance (with the wheelchair).

I got a pleasant surprise on Friday when Catherine told me she had organised her partner Naomi to pick me up for parkrun on Saturday morning.  At Ginninderra Parkrun I got a different perspective of Lake Ginninderra and the bridge over it that I had been crossing daily between Flynn and North Canberra Hospital.

Naomi joined us at the festival on Sunday.  On Monday she and Catherine flew home.

Our trip home started with an annoying hour wait at an ACT government office to get an unregistered vehicle permit. 

For Tuesday night, we broke our trip home at the border again.  We cooked our first dinner in our new van. 

On Wednesday morning we had a booking at VicRoads Wodonga to get our new Avan registered – a quick and easy process.

Cycling again

Driving near Seymour, I felt drowsy.  “Drowsy drivers die” the signs say.  So we’d better stop.  I remembered from last September that the Great Victorian Rail Trail starts at Tallarook, near Seymour.  We pulled off the freeway, unhitched the caravan, unloaded our bike, and cycled 16 km.  It was great to learn that Antigone’s cycling ability remains unaffected by her recent strokes.  No more drowsiness after that.  It was great to go for a good ride.  Our bike had only been used twice this trip – within EPIC to transport our washing to and from the laundry facilities.

At home, with our new Avan in our driveway, our garage door couldn’t open.  Oops.  With the spare wheel removed, the garage door opens with 3cm clearance.  I found we can store the spare wheel at the less accessible end of the accessible storage area under the bed.  Lucky.

On Thursday and Friday morning Antigone squeezed in sessions with her personal trainer Perry and her physio Joi.  Important after two strokes affecting mobility.  I improved our Avan handrail with a fixing to the van itself.  Friday afternoon we headed off again to Turramurra where we ‘bathed’ in music and community.

Janey joined us for the Sunday, which was lovely.  It allowed me a chance to go for a run.  On Sunday evening, Janey and Antigone performed with the singing workshop, I performed with the beginners fiddle workshop, and we both performed with the Zamponistas unscheduled ‘flash-mob’ performance during the concert interval.  Janey assisted the Zamponistas by going ahead of us and lifting small children out of our path!

What a month! Not what we planned, mostly not relaxing; nevertheless another successful festival tour. Maybe we’ll visit the Blue Mountains next year.