Life as a ‘Tuber’ – New Zealand

During the very brief period I was under palliative care, I thought long and hard about all the things I wanted to do but for
various reasons had never got around to doing them. I promised myself that if I ever managed to survive this bout of cancer,
I would do as many of them as I possibly could. Fortunately, things turned out very much in my favour and by May 2021 I
had survived both the surgery and the cancer and was taken out of palliative care.
When things settled down, along with my wife June, we began to think about all the things we would like to do together. I’d
always wanted to visit New Zealand and as June had enjoyed a couple of trips there before we met, it seemed to be the
logical place to start. We decided we’d like try and spend the winter of 2022/23 exploring both North and South Islands.
One of the major drawbacks for travelling during those first months after my surgery, was that being permanently nil by
mouth, I was totally reliant on artificial feed via a PEG for sustenance. But supplied on prescription by the NHS, at 6 bottles
a day I would need a guaranteed minimum of around 550 bottles to last me through the whole 3 month trip. As there is no
UK/NZ agreement to cover the cost of my medications and feed, I would have to buy my supplies there. But at somewhere
around NZ$9.00 a bottle, it would cost well over £2,500 for enough to last me the whole 3 month trip. Also, the artificial
nutrition available in New Zealand was less nutritious than that which was available in the UK, so I’d need to have more of
it, in order keep my daily intake properly balanced. It all seemed very complicated and expensive, so we decided we would
have to try and find alternative ways of getting my necessary feed supplies and medication.
After some considerable research, (mainly by June), we eventually found out that the company that supplied the NHS had
contracted to ship to almost any country in the world. As New Zealand was on their list, they would deliver there, free of
charge. We were delighted and upon contacting them, it was confirmed that they would deliver my 3 month’s supply. All we
needed to do, was give them the address and a minimum of 6 weeks notice. Furthermore, they would deliver in 2 separate
lots - one to North Island, and the other to South Island. That sounded encouraging.
Next came accommodation. To stay in hotels or B&B’s for the whole three months, we found, would not only be be quite
expensive, but would be awkward for my feeding regime. We needed to find some form of more suitable accommodation.
We did have some friends in Devonport near Auckland, who would be more than willing to put us up for a while, but we
didn’t want to impose ourselves on them for such a long period. Besides, we wanted to travel around and see as much of the
country as possible.
Eventually, after much more research by June, we came across home exchange.com, which sounded like an ideal solution. It
works more or less like an on-line house-swap club for like minded people who enjoy travel. Each time someone stays in
your home, you earn points which can be ‘spent’ by you staying in their, or another member’s home. With a choice of
exchanges in around 150 countries including New Zealand, it sounded just the ticket for us. It also appealed to us as we
could live within the community, as opposed to crowded tourist spots. Also, by staying in houses rather than hotels, we
could have all the facilities of home, which of course would suit my feeding regime.
We thus joined the Home Exchange community and immediately started contacting ‘Home Exchangers’ to try and arrange
places to stay and available dates. I won’t go in to all the details at this time, but all in all, we found that home exchanging
was not difficult and contrary to what our various friends at first thought, after nearly fifty exchanges to date we have never
had a bad experience.
Once we knew my nutrition and our accommodation was do-able, the next thing was to start looking at how we would get
there. With a sixteen hour flight to Singapore, another twelve hours or so to Auckland, and allowing for travel to and from
airports, I would need to carry quite a number of bottles of liquid feed and medications - certainly much more than was
allowed to take on board with normal cabin baggage allowances. Without the necessary permission, airport security would
have a field day confiscating all that liquid. It would also be more than most airline’s weight or dimension allowances. We
therefore needed to be able to meet security requirements for the liquids and also to convince the airline that extra baggage
allowance was required for cabin, as well as in the hold for the medications and extra bottles of feed I needed in case there

was any delay in receiving my shipment. At that time I was having to take various medications in liquid form, so there were
quite a number of other bottles, pills and extension tubes to take with me, as well as spare syringes and gastrostomy feeding
tubes in case of blockages etc.
I don’t know if being reliant solely on tube feeding would be classed as a hidden disability, but we decided that for the
purposes of our travel plans, we would call it that, in the hope that it would help open doors for us. The first thing we had to
do, therefore, was to obtain a letter from my GP stating that I was totally reliant on liquid feed and medications which would
need to be taken on board with me for the journey. Hopefully that would satisfy airport security restrictions, as well as the
airline’s on-board baggage limits.
The next thing we had to do, was to find out which airline would be best suited for me. We thought Premium Economy
would be the most convenient way to travel, as it would give me just that little bit more elbow room. I didn’t relish the
possibility of being crammed into the middle row of economy trying to measure out medication as well as dispensing liquid
feed from bottles into a more suitable container, with little or no elbow room to be able to use the syringe.
Airlines differ in how they treat passengers with special needs. Some are really friendly and will bend over backwards to
make your journey as hassle free as possible, whilst others barely pay lip service to their obligation to accommodate special
needs passengers. June put many hours into researching the various airlines that fly to New Zealand and eventually came up
with Singapore Airlines, which seemed to tick all the boxes as far as my needs were concerned. Not only did they allow me
to take extra hand baggage for my food and medication en-route, but they also gave me a generous allowance for hold
baggage.
It now looked like everything was falling into place, so we decided to bite the bullet and book our flight for 23 rd November
2022, returning on 23 rd February 2023.
After carefully scanning the seat plan of the plane, we managed to book two seats at the rear of Premium Economy which
backed on to the internal partition. This gave us a little bit more leg room as well as some additional storage space behind
our seats – perfect. It was all systems go and all we had to do now, was plan where we would stay, using Home exchange
points.
However, things didn’t quite work out as planned. Not long after we booked our flight, we were informed that Fresubin had
lost the contract to supply artificial feed and the ancillary equipment. Abbot laboratories would now be the new supplier of
my liquid feed and it was unclear whether they would agree to dispatch it to New Zealand. We quickly got in touch with
them to clarify the situation regarding my travel plans, only to be told that they would not be delivering, as it wasn’t
commercially viable. We were absolutely gutted at this! If I couldn’t get my supply of food, we would have to cancel the
whole trip and lose our airline deposit. Initially, no amount of persuasion on our part would make them change their mind,
but after hours of telephone calls and countless emails, they eventually agreed that they would honour Fresubin’s agreement
and on this one occasion only, ship to New Zealand.
As we wanted to see as much of the country as we could but without rushing around too much, we decided on a circular
route starting in Auckland, North Island, then over to South Island and finishing back up in the north. Fortunately our friends
who lived in Devonport, a beautiful little town across the water from Auckland, were only too pleased to put us up whilst we
explored the city and surrounding area. But more importantly, they would also accept advance delivery of my first lot of the
Ensure 2Cal feed (10 cases of 30 bottles each), and hold them for me. That was a good start.
The next job was to find suitable transport during our stay. We needed to have a decent, reliable car that would not only be
able to take our luggage, but also all my medical paraphernalia and bottles of feed. We had heard that some people, when
visiting New Zealand for any length of time, bought a cheap second hand car and then resold it when leaving. However, as
we planned on covering a lot of miles, we didn’t want the uncertainty of breakdowns, so we decided that as our

accommodation costs would be minimal, we would splash out and hire a car in Auckland and keep it for the duration. It
probably worked out a lot more expensive, but at least it would give us some peace of mind.
By researching Home Exchange, June found exchange houses in both North and South Islands for almost the whole 3
months. During that time, we explored very many towns, villages and locations throughout the whole country. We had a
seaside cottage in a quiet little North Island bay, we stayed on a working dairy farm, a vineyard where we had my second
delivery of feed and finally a spacious bungalow in Wanaka, South Island.
Amongst our many unforgettable experiences, were a helicopter ride on to a glacier near Mount Cook, where we donned
crampons and explored ice tunnels. We jet-boated down part of the Frazer river over rapids and around rocks, then did the
same on an iceberg littered glacial lake. We hiked on coastal trails and mountain paths, flew over wilderness areas on a light
plane, witnessed the wonderful waterfalls of Milford Sound and so very much more.
All in all, our trip to New Zealand was a truly memorable experience that will stay with us for the rest of our lives.
Jim Turner
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