reading

CHAPTER 1

A NEW LIFE

I’ve always loved travelling, especially to places with a bit of an edge to them. Some of those places have been very exciting and I always wanted more. But in recent years, the way I travel has changed dramatically. I have trouble walking and I need mobility aids; this is because I developed multiple sclerosis (MS).

So many things have happened to me while I’ve been travelling with walking aids – so many funny things. My aids have ended up giving me more interesting and funny stories to tell than when I travelled without them!

With that change, I thought I had to do a lot more planning and checking before I left on a trip in order to feel confident, so I’d know what to expect and be prepared. Well, I was a Queen’s Guide! I was taught the Girl Guide motto ‘Be Prepared’. I still have my shirt with its badges (I loved getting those badges!), and the motto is still inside me.

As well as some form of aid, I also need someone to go travelling with. I can’t manage the devices on my own. Nor can I carry a bag of clothes and whatever else I need and ride my scooter at the same time.

Luckily, I have a wonderful friend who is my flatmate and who also loves travelling. Sue, who is just a bit older than me, is fit, able and happy to help.

I first met Sue when we worked together at a university hospital in the late 1970s – a long time ago. We’ve been friends ever since, and our paths crossed at different times, sometimes with many years in between. We’ve always got along well and our friendship has got better as we got older.

Sue is her own person and we make a great team. Our skills and interests complement each other. We can chat easily or be silent. She’s great company and we have a lot of laughs.

I may have had MS for just over twenty years, but it wasn’t until 2006 that I was diagnosed with secondary progressive MS. That’s serious stuff.

What is MS? Good, reliable, up-to-date information can be found on various websites, such as those produced by MS Australia, the MS Society in the UK, the National MS Society in the US and the MS International Federation.

Very simply, MS is an autoimmune disease that causes the body to reject and destroy the myelin conducting fibres of nerves in the central nervous system – that is, the brain and spinal cord. The transmission of information becomes slowed, interrupted or stopped. The cause of MS is unknown and there is no cure.

The main physical symptoms of MS are problems with mobility, bladder and bowel functions, vision, speech and fatigue. Mobility and fatigue are my main problems, with a bit of bladder thrown in.

Everyone with MS has different symptoms, and we’re all at different stages and rates of progression. We also have something in common, but there’s a great range in how severe each person’s problems are.

New treatments are changing what happens in the course of the disease, and I believe it’s important to keep up to date with a good neurologist who has an interest in MS. I receive four-weekly infusions of a monoclonal antibody type of drug called Tysabri (Natalizumab).

Early in my diagnosis, I read that MS was characterised as a disease that causes slowly progressive paralysis. One of my first thoughts was that at least it was slower than motor neurone disease (MND). That was a terrible disease.

My employment background is in health – in management, administration and the corporate side of hospitals and health services. I started my university education with a bachelor of science degree but changed to medicine when it hit me that being a doctor was the only thing I wanted. I ended up with a medical degree from the University of Sydney, a masters in health administration from the University of NSW and a college fellowship in medical administration. I was very proud of what added up to ten years at university. I spent the early years after graduation as a general practitioner, but I loved being where I ended up. At the time I was diagnosed, my career was still progressing.

When I realised that I couldn’t continue to work as the CEO of a large organisation, my first reaction was incredible disappointment. I loved working. We’d just finished the first stage of a massive change management programme and it was an exciting time. There was more to do. Suddenly, I had to stop and think about a new life. I’d wanted and expected to be working well into my sixties or seventies, but I had to stop at the youthful age of fifty-three.

My next response was to just deal with it the best I could.

I finally found the best neurologist I could and followed his advice and recommended treatments. I also tried to learn as much as I could about MS. I’d never encountered it closely before. I joined the MS Society, received their newsletters and went to their information sessions. I saw a physiotherapist and did exercise programmes. I rested every day. I tried to eat a healthy, balanced diet. What else could I do?

Being located in Melbourne wasn’t essential any more. Where was the best place to live with my MS? I’d worked and lived in all four of the states on the eastern side of Australia – Queensland, NSW, Victoria and Tasmania. I was familiar with all of them. I’d bought a house in Queensland some years back, but had been working and living in Melbourne in more recent years. With my MS, for most of the year Queensland was too hot and humid for me. Melbourne was cooler most of the time; it was also flat, easy to get around and it had a highly accessible public transport system. I decided that Melbourne would be my new home base for the foreseeable future.

For the first time, I needed help with daily living. Sue had recently retired, after thirty-five years of working and helping other people. Now she became my carer. Melbourne, with its famous sandbelt of golf courses, was also the perfect place for her, with her passion for golf.

It occurred to me fairly quickly that because I wasn’t working any more I had a lot of free time. Some time was taken up with medical appointments, infusions, exercise and rest. But I could see I’d have time available to do the things I loved, especially travelling.

I accepted the fact that I had MS and tried to find ways around it. What was I able to do with my current abilities? My right hand wasn’t affected, and I had to sit a lot of the time. I could see, talk and think. Writing, reading and more travelling were my first picks. I also took a greater interest in managing my financial affairs, as well as playing the stock market and trading.

Having MS was a new phase in my life, an opportunity. I’ve always had a very positive attitude – I’ve been called ‘Pollyanna’ more than once in the past! I can still hear my mother’s voice saying, ‘Where there’s a will, there’s a way’. She was always encouraging and she was very proud of me. ‘You can do anything you want to,’ she said, and I believed her.

There had to be ways around difficulties. Anything was possible, you just had to organise it. I was a good organiser. But organising my reduced mobility was going to be one of the most interesting challenges I’d faced so far.

I caught the travel bug from my mother, and I loved it for so many reasons. I loved learning, seeing and experiencing something new. I found everything involved with travelling to be exciting. But for the trip I was planning in 2011, I felt I had to approach it in a different way.

CHAPTER 1

THE IDEA

Going on the trip to Norway and the Arctic was very important to me. But why go to those places? How did I arrive at that choice? I think the idea came about because of the polar bears. I wanted to see them in their natural habitat. I was sure Sue would want to see them even more than I did. She has a special feeling for animals and wildlife. As my friend and carer, it was important that she was happy with the trip. We always travelled together these days.

I also wanted to go to a place that was unusual, somewhere far away, with some remoteness – a place that had a bit of an edge to it, somewhere that had some extra excitement going for it.

Gwen, who lives in the same apartment block as Sue and me, had spoken to us about a trip she’d been on a few years earlier. She’d told us that her trip had circumnavigated the island of Spitsbergen in the Arctic. We must have been talking about wonderful animals, starting with her dog and then somehow moving on to polar bears. Gwen had a beautiful dog called Lilly, a Sheltie – a miniature Lassie dog – who, like the bears, had some long white fur!

Her trip sounded wonderful, and when we joined her for a drink one day Gwen brought out some photos. ‘You might like to have a look at these. They were taken from the ship, we were so close.’ They were very good photos of polar bears. I hadn’t planned our yearly overseas trip yet and, yes, it was then that the seed was planted.

We’d also recently watched a television programme, a Global Village series, on one of the SBS channels. It showed Geirangerfjord in Norway. The scenery was stunning. That place became etched on my brain to see one day for sure.

I hadn’t been to any Scandinavian countries before. Sue had been in the early 1970s. She’d travelled around most of Europe then, from her working base in London. However, she hadn’t been further north in Norway than Trondheim. A trip further north would therefore include new territory for both of us. That was yet another reason to go to the Arctic area.

The Northern Lights came up at some stage. Unfortunately, I realised after a few enquiries that the polar bears came out in the northern summer and the lights were best in the northern winter. However, the lights were always there, and the darker the sky and the fewer the clouds, the easier it was to see them. If we were lucky, we might be able to see the lights anyway.

Yes, that’s how I decided in 2010 to start looking in more detail about going to Norway and the Svalbard Arctic region for next year’s overseas trip. How would we go there?

I recalled hearing a few years ago about the Hurtigruten coastal run in Norway. But I wanted to go further north than the coast of Norway to be able to see the polar bears. The bears lived on the island of Spitsbergen in the Svalbard region, not on the mainland of Norway. The island was about one thousand kilometres to the north-west, well away from the coast of Norway.

There were boat trips like Gwen’s advertised, ones that went only around the island, and there were separate trips that covered the mainland coastal route of Norway. I wanted to go to both areas. When I did see trips advertised going to the two places, they involved flying between two different boat trips. The other thing I wanted was to stay on board the same boat. I didn’t want to pack and unpack or negotiate any more airports than I needed to. It was more difficult for me at airports these days, with my mobility problems and aids.

The type of ship that we’d take was important too. I wanted to get off the ship to be in the natural environment. I had in mind something like the inflatable boats – Zodiacs, they were called – that we took on our Antarctic trip in January 2008. Those small, ten-person vessels brought you so close to wildlife and nature. It was wonderful to be on one. And, like Antarctica, we both wanted to be on more of an expedition than a cruise.

We didn’t want to dress up formally at night or be entertained with shows. However, we did want to listen to talks and lectures by professionals, about the area we were travelling in and the wildlife living there. The ship also had to have a lift (important for my gear) and be accessible for me. There shouldn’t be too many passengers either – not a number in the thousands. About two hundred would be plenty.

When I saw a brochure advertising an expedition cruise trip commencing in Longyearbyen, the capital of the Svalbard region, after a flight from Oslo, I was very excited. The route on the rough map provided spoke to me. I took a photo of the map on the brochure so I could refer back to it as I planned the trip. (Photo 2.1.1)

images

Photo 2.1.1 Map of our expedition cruise
Image credit: Hurtigruten

The ship was the MS Fram. It was a special Hurtigruten ship and usually went on voyages around Iceland, Greenland and the Svalbard region in the northern summer, and to Antarctica in the southern summer. The trip was apparently a new schedule that included parts of the coast of Norway after leaving Svalbard on its way south to Antarctica. The passenger capacity was about two hundred to three hundred. I thought it looked like a fine ship for our cruise. (Photo 2.1.2)

images

Photo 2.1.2 The MS Fram

The MS Fram was used for expedition trips, or what were advertised as ‘explorer voyages’. The ship had craft on board called polar circle boats. The photos in the advertising material showed these as light metal craft, with outboard motors. They could take about ten people. They had steps to board and disembark, and a rail down the middle to hold. That looked even better for me than the Zodiacs. I can walk short distances and get up and down a few steps very slowly. I thought those boats should work out okay for me.

There was only one trip advertised. It was in September of the following year, 2011. That was at the end of the polar bear season and there was also the possibility of seeing the Northern Lights. The ship had a lift and there were no formal evenings. It was an expedition cruise, with talks and lectures by naturalists and other scientists. It all seemed ideal.

Whenever I decided to travel, I’d think of my mother. She was in her eighties at the time and had a passion for travelling. She’d already travelled to many places in the world but still loved going away.

Mum had been to Norway on an excursion from England many years ago. It had been a short trip of a few days to see some fjords and the city of Bergen. She still had the article advertising the trip filed away after nearly thirty years. Mum also kept postcards as souvenirs. I kept a lot too. She’d sent one to me from Norway and I’d had to give it back! She sent both of those items to me in the mail when I said I was thinking of travelling to Norway.

The scene on the front of her postcard was of Geirangerfjord with two ships in the water. Someone was sitting on the edge of a mountain overlooking a town and the fjord. (Photo 2.1.3)

images

Photo 2.1.3 Mum’s postcard of Geirangerfjord
Image credit: Photo Normanns Kunstforlag

Printed on the back was ‘Norway: Flydalsjuvet abyss Geiranger. Foto: Normann. T-13-66’. It was an excellent picture.

Stamped on the back of the postcard was the postmark of Bergen with the date ‘11–9.84’. Mum’s writing on the card had the date at the top of ‘9.9.84’. (Photo 2.1.4)

images

Photo 2.1.4 Back of Mum’s postcard

Mum’s writing on her postcards was a little difficult to read but there was always something humorous in them. Her use of upper and lower cases was also interesting. My interpretation of her writing, exactly as it was set out on the card is here:

My dear Maur Phil & Den

This is LAST

CARD.

Now IN Norway JUST

didn’t Have Time to run INTO this one to

Take shot. Have been to Denmark & Copenhagen

& Sweden & iN Norway to the North. Had

2 Days in Oslo yesterday. Tried & went to

Mass this morn & found place with cross

on & High Walls thought it was a Monastery

& it was the JAIL. SALVATION army girl

guided me to right place. Visited the

Big Ski Jump Here & Fiords & Viking

Ships & Kon TIKI yesterday. Lovely Hotel

Here SNOW capped MtNS. Sauna & Heated

Swim Pool glass looking out to them as if your

Swimming Tucked away. area like Isle

of Skye & country North Norway like

Switzerland. They have grass growing on

Some Roofs of Houses in countryside &

put a goat on Roof to Keep it down.

Have Had Mxd weather. Rooming with

a American woman & all OK. Have

Heard of Ferry crossings in which Bus &

Trains go on Board to cross also an

elaborate Duty Free Shop even selling

cheeses & Sausages & TINNed Food Duty Free.

Supposed to be Better Scenery Tomorrow.

Will Try to Post Somewhere where it may get

to you Before I arrive home. Lovely Red

Yellow Beige Moss Stuff on MTNS Here Have

a lovely Heated Room & View to Lake.

Love To all

See you Soon MOM xxxxx

There was more writing up the middle at right angles:

Leaves Beginning to change on TREES

Posted Bergen 10.9.84

Mum had come to Egypt and Jordan with us in January 2010. My brother Dennis and his wife Paddy came to help me, but Mum was the one who’d ended up needing more help to get around than we’d anticipated. She had trouble walking, which was unusual for her. Not long after arriving back home, she’d improved.

When we went to Antarctica with her, two years earlier in January 2008, she was fine. She didn’t need any help and loved it. I thought she might be interested in coming to Norway and the Arctic with us next year if she felt up to it.

Dennis was not on the Antarctic trip, but the polar regions fascinated him. He might be interested in coming on a trip to the Arctic with us. It would be to help Mum mostly, in case she needed him again. He would also be a good backup for me. Dennis was big, strong and very thoughtful.

When Christmastime 2010 came around, I saw a special deal on the internet for the trip that I had in mind. There was ten per cent off if you booked and paid a deposit by the end of December. Mum was having Christmas with Dennis that year. He lived in Ballina, in northern NSW, and so there were many STD phone calls racked up over that season.

After a lot of discussion about the ship, the cabins, deck levels, the beds, the possibility of seasickness, the number of airport transfers and similar concerns, Mum decided that yes, it was worth it, she’d come. Dennis said yes too. He’d come on his own and share a cabin with her.

In late December 2010, I booked the Hurtigruten trip – for four people and two cabins – through a travel agent, just in time for the discount.

Some weeks later, when Mum was back at her home on the NSW Central Coast, she rang me and left a message. ‘Oh, it’s just Mum here, love. Nothing urgent. I’ll call you back later. It’s … ah … about 9.30 on Monday. I just wanted to have a chat with you about something. I’ll ring you back later. Thank you, love. Thank you. Mum here. I’ll call you later.’

When I talked with her soon afterwards, she said, ‘My back’s not too good, love. I don’t think I can go on the trip with you. Will you be all right on your own?’

Dennis was really going for Mum’s sake. He would also have helped me too, I’m sure. In Egypt, he carried me on his back to get down and back up the long flights of steps to the River Nile. We went on a felucca ride in Aswan and had to get from road level down to the boat on the water at low tide. It was a long way down. Mum managed those steps then, even though she had trouble walking. But now she was older and frailer.

After many more conversations, I cancelled the booking for the two of them. That left Sue and me. I realised then that since my diagnosis of MS, Sue and I hadn’t travelled outside Australia alone. My mobility aids had to be loaded and unloaded into cars, buses and planes. Sue had always had help before. We discussed whether we’d manage, and decided we would. We kept our booking.

The expedition cruise that I’d booked was called ‘Polar Bears, Islands and Fjords’. It started in Oslo in the south-east of Norway and finished in Bergen thirteen days later on Norway’s south-west coast. There were set dates and arrangements for the cruise package, starting with a flight leaving Oslo on 7 September and finishing with the ship arriving in Bergen on 19 September. I had to plan and book the rest of the trip.

I got out my 2011 calendar, photocopied the month of September and wrote on it all the dates for my infusions at the hospital. Because I had intravenous Tysabri every four weeks, I had to arrange travelling around those dates.

I could change the infusion day by about a week or two, but not more than that and not very often. I highlighted and marked the dates of the cruise on my calendar and took note of all the infusion dates in and around September. It looked like I’d have to change one date by two weeks. I thought I’d double-check that with my neurologist.

I bought the Lonely Planet Norway guide, looked at websites and did some reading. I also spoke with people I knew who loved travelling for ideas about Norway.

My next immediate job was to get us to Oslo and then back home to Melbourne. I wanted to work out the best way to fly to Oslo and exactly when we’d leave and come back, fitting it in around my infusions. Flying from Australia to Europe was such a distance that I thought I’d try to make the flight interesting but not too tiring.

I spent time viewing several airline websites. I looked at times, routes and prices. The price didn’t matter that much as they were all about the same. Sue and I always flew economy class. We didn’t need extra room and the service was good enough. We couldn’t see the benefit of the higher cost. Everyone likes to get a good deal, so I kept a lookout for specials as well.

Trying to get to Oslo with a minimum of changes seemed to be challenging. If we did have a stopover, where would that be? It would have to be somewhere that was easy, interesting and not too hot. My first look had planes changing at Heathrow – no. Then there was Frankfurt – no. So big, I thought. What about a smaller European airport? That was another line of thinking. Then I thought about getting there via Dubai, Bangkok, Hong Kong or a Japanese city.

That January, I was on the phone to my friend Carolyn in Brisbane more often than usual. There were terrible floods up there. The Brisbane River had broken its banks. The river was flooding into the city and low-lying suburbs. The events were on the news every day. A monsoon trough was moving over northern Australia and the rains had been extra-heavy that year. Carolyn lived near the top of a very big hill, so she was safe. But she still couldn’t get out and go too far for a while.

One day, when I was talking with Carolyn, she mentioned her upcoming travel plans. She and some friends in Brisbane were going on a trip to Norway, including a cruise. I was astounded. They were some of our best friends and I hadn’t heard of their trip. ‘Really?’ I said.

‘Yes, why?’ said Carolyn.

‘I’ve just booked a cruise in Norway!’

‘You’re joking!’

‘No, I’m not. When are you going?’

‘We’re going on the Norway part of the trip on 8 June.’

They were going on the Hurtigruten coastal voyage – the old Norwegian coast postal run – three months before our planned trip. They were starting in Oslo and going overland to Bergen to board the ship. From Bergen, they were sailing north up the coast to near the Russian border. Then they’d fly back south from the town of Kirkenes. They’d be back in Brisbane on 5 July, about two months before we were due to leave.

Carolyn was flying from Brisbane to Düsseldorf via Dubai, and then going to Oslo from there. They were breaking the trip at Düsseldorf to stay in Germany for a while. Düsseldorf was yet another stop for us to consider. There were direct flights from there to Oslo, and Carolyn said it was a small and manageable airport.

That conversation with Carolyn about travelling to Norway was the first of many. She also ended up doing a reconnaissance for us, to check a side trip called ‘Norway in a Nutshell’, which I’ll explain later.

After weeks of searching and thinking, the flights to Oslo still didn’t gel with me. There seemed to be too many connections and the time it took to get there seemed longer than it needed to be. I didn’t like any of the suggestions that came from the travel agent who did our cruise booking. They just didn’t feel right.

In the middle of these days of beginning to plan and book a trip to Norway, I also had to have a routine magnetic resonance imaging (MRI) scan of my brain. I had it on 8 February. It was my fourth one and the result was good news. The lesions in my brain were unchanged since my last MRI, and there were no new ones forming. This took my attention away from thinking about our flight route for just a little while.

Then I remembered that there was another travel agent I could try. A friend had recommended a particular agency in the past. Even though my first contact with them for information about another trip had been a disaster, I thought I’d try them again. The person I’d dealt with before was away when I phoned. The new person who returned my call was very helpful and quickly pointed out that there was a direct flight to Oslo from Bangkok departing from Melbourne with Thai Airways. It was available for travel in the month of September and was on special. Decision made.

Booking that flight meant that certain other bookings also had to be made. I needed wheelchair assistance as usual, but what was different for the Norway and Arctic trip was my new scooter. I’d never travelled overseas with it before, and it had to be booked in as well.

***

I’ll always remember going to my first MS Society information day. It was for people who had recently been diagnosed, and I was afraid of going. I was afraid of what I might see there. I asked Sue to come with me, but I walked into the meeting without any aids and without any help at all.

After a little while, I couldn’t help but look around – I tried to be very subtle – to see what other people looked like. I wanted to see what might be in store for me in the future. So I studied them. Everyone looked as if there was absolutely nothing wrong with them at all! Just like me. No one was in a wheelchair, but there were plenty of questions about wheelchairs when it came to question time.

There were a few men in the audience but it was mostly women. MS is known to affect three times as many women as men. Most people at the session seemed to be aged in their twenties or thirties. That fitted the statistics as well. But I was older than that, and I found out why much later.

Many years ago, I’d thought about what I might do if I ended up in a wheelchair for some reason, such as an accident. I love sport so I’d thought, Oh well, I’ll just become a wheelchair athlete. I’ll enter competitions and be in the Paralympics. It didn’t occur to me that I’d need strength in my upper body and arms, as well as stamina, to roll a wheelchair along, let alone compete in races.

Not long after that MS meeting, a mobility scooter was recommended to me.

I’ll also always remember going to the Independent Living Centre (ILC) in Footscray, to meet up with an occupational therapist and test out several scooters for the first time. I didn’t enjoy riding any of them. They were too big and bulky, and just looked and felt too obvious. I didn’t feel like myself. It wasn’t me who was riding them!

I tried to convince myself that I didn’t really need one. I could still drive and my right leg was okay. I’d just drive right up to where I wanted to go and walk the very short distance to get wherever it was that I was going. But I did need something. Some distances were just too far to walk.

The best way to get around this, I decided, was to get a small movable chair – a ‘Go Chair’, it was called. It was red, and I could break it up into four small pieces and put it in the boot of my car. I could also use it at my desk at home. It worked out well for a while.

That seems a long time ago, but it wasn’t really, only a few years. I’ve become much more pragmatic and accepting since then. I need aids so I can walk, and that’s all there is to it. So I bought aids and I used them.

In October 2010, I once again went to the ILC. I was always looking for better, easier, lighter devices, especially for travelling. I kept an eye out all the time. The ILC had a lot of good information and a showroom of hundreds of disability products and devices. While there, I saw a video of a new scooter, just out, called a ‘Luggie’. As soon as I saw it, I wanted it. It looked fantastic.

Within a few days, I was the proud owner of a bright new Luggie scooter. It was easy to collapse, and easy for a helper to wheel and load. It had a light, two-kilogram lithium battery that lasted a long time, and run-flat wheels with no tubes. Its total weight was twenty-three kilograms. When it was folded down, Sue could pick up one end by its handle and pull it along on its wheels. And I found it at just the right time too. The blue electric wheelchair I’d been using had served me well, but, by then, it had seen better days and many of its parts were worn out.

My new scooter was yellow. I picked that colour because it was bright and I like yellow for a vehicle. The first brand-new car I bought was a bright yellow Mazda RX7. I loved driving that little sports car. Zoom-zoom! I now had a new yellow vehicle.

***

After I booked the flights, I explained to the travel agent that I needed wheelchair assistance and that I’d be taking my electric mobility scooter as luggage. She was very helpful and efficient in dealing with my requests. I had to answer the airline’s questions about my needs and give them the details of my mobility device. I was able to answer easily as I’d learned quite a bit about flying with mobility aids by then.

My old collapsible blue wheelchair weighed thirty kilograms. It used a very heavy dry cell gel battery to power it. The two lighter collapsible parts of the wheelchair were very carefully tied together with the battery for air transport. Two of the wheels on one of the parts had inflatable tyres. I travelled with spare tubes, wheels and a pump. When I first took it overseas to Egypt and Jordan, Dennis was there to help us carry and lift it. My new yellow scooter seemed to be easier and better.

For the Norway trip, I gave the details of the yellow scooter to the travel agent so that she could pass the information on to Thai Airways. I said that my mobility device when collapsed down measured a hundred centimetres long, forty-five centimetres wide and forty-five centimetres high. I gave her the weight of the scooter and said it had a dry cell lithium battery. I also said that I had a material safety data sheet (MSDS) for it and photos. The photos showed the scooter upright, collapsed down and what it was like when someone was moving it. (Photos 2.1.5, 2.1.6 and 2.1.7)

images

Photo 2.1.5 My Luggie scooter (upright)

images

Photo 2.1.6 My Luggie scooter (collapsed)

images

Photo 2.1.7 My Luggie scooter (being moved)

Then I answered the questions in the travel agent’s email about my wheelchair assistance needs. The questions and my answers were:

Q. Can you walk up or down airline steps?

A. No

Q. Do you need assistance to get to your seat in the aircraft?

A. No

Q. Do you need help with meals and toileting while aboard?

A. No

Q. Do you have someone travelling with you to help?

A. Yes

By 16 February, I’d paid for our air tickets with credit cards and the travel agent had sent us our e-ticket, itinerary and receipt. We were booked and confirmed to leave on Thursday, 1 September and return on Sunday, 25 September. We would be away for a total of twenty-five days.

I usually liked to travel for less than thirty days at a time and the four-week time constraint for my infusions worked well with that. I was very happy to have finally made a booking. But I wasn’t able to do any other work on the trip for a little while. My mind was occupied with something else.

Earlier in January, in the middle of thinking about flights, I’d had a skin lesion removed. It was very small, about three millimetres wide, on my left little toe. It was a funny spot for a spot, I thought, and it looked a bit odd.

I saw a dermatologist and he excised it on 13 January. He rang me six days later to tell me the results. We were driving to Geelong when he called. Mum was in the back of the car because she’d come down for the Australian Open tennis championships and my birthday. We had the old blue wheelchair in the boot. We were taking it to a repair place near Geelong to get it fixed to use as a backup. I remember it all so clearly. My dermatologist asked, ‘Is this a good time to talk?’

After a little hesitation, I answered, ‘Yes, thanks.’

‘Maureen, the pathology report says that it was a Level 1 melanoma… You need to have it excised more widely. Which plastic surgeon would you like to see?’ I knew that he meant it was a malignant skin cancer and that it needed wider excision as soon as possible. I asked whom he’d recommend. He suggested a surgeon associated with the melanoma unit, and his secretary made an appointment for me.

The sins of my youth were coming back to bite me. My days of sunbaking, bikini-wearing and surfboard-riding had already shown their effects on my skin; I’d already had several non-malignant skin cancers removed. It’s a common story for many Australians.

But what an odd spot, I thought again. On my little toe. How much sun had it seen in its life? Apparently, it wasn’t so unusual after all. I was the second person that week to present with it!

The area was more widely excised by my plastic surgeon on 17 February, five weeks after the original excision. That was well within the ideal recommended time of six weeks. The melanoma was small, early and had a very low level of malignancy. It had probably been a complete cure with the first excision. All I needed after the wider excision was a regular follow-up.

I must admit, I was very anxious about having the wider excision done as soon as possible. The appointment on 17 February was the earliest one I could get with that plastic surgeon, and I thought he’d just look at it and then book me in for the surgery on another, later date. But, instead, he excised the area on the same day. I was also worried about getting up and back down the twenty steps to his rooms. But there was no need to worry about that either. His secretary let me in through the car park of the building, where there was a lift. I was able to ride my scooter up to his rooms.

After that, I was back on the job for the trip bookings again. There was much more to do.

I took out travel insurance to cover the September travel period. I’d been relying on credit cards to cover the flight tickets for the few weeks in the meantime, and then the melanoma turned up. My travel insurance policy with my private health insurer, HCF, covered me for emergencies but not those related to multiple sclerosis or melanoma. I was happy enough with that. I thought real emergencies due to those two things would be most unlikely. I also insured my scooter for loss or damages.

I didn’t book anything else with travel agents after the flights. I went back to my laptop and the internet, with maps and books spread out across my desk.

The flight was booked. The cruise package was booked, with its one night in a hotel. That left just ten days out of the twenty-five to work out. However, working out those ten days wouldn’t be as quick as I’d thought it would be. I wanted to check everything properly and also do the ‘Norway in a Nutshell’ side trip.