Life as a ‘Tuber’ – New Zealand
Jim Turner
Jim Turner
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During the very brief period I w<strong>as</strong> under palliative care, I thought long and hard about all the things I wanted to do but for<br />
various re<strong>as</strong>ons had never got around to doing them. I promised myself that if I ever managed to survive this bout of cancer,<br />
I would do <strong>as</strong> many of them <strong>as</strong> I possibly could. Fortunately, things turned out very much in my favour and by May 2021 I<br />
had survived both the surgery and the cancer and w<strong>as</strong> taken out of palliative care.<br />
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<br />
always wanted to visit <strong>New</strong> <strong>Zealand</strong> and <strong>as</strong> June had enjoyed a couple of trips there before we met, it seemed to be the<br />
logical place to start. We decided we’d like try and spend the winter of 2022/23 exploring both North and South Islands.<br />
One of the major drawbacks for travelling during those first months after my surgery, w<strong>as</strong> that being permanently nil by<br />
mouth, I w<strong>as</strong> totally reliant on artificial feed via a PEG for sustenance. But supplied on prescription by the NHS, at 6 bottles<br />
a day I would need a guaranteed minimum of around 550 bottles to l<strong>as</strong>t me through the whole 3 month trip. As there is no<br />
UK/NZ agreement to cover the cost of my medications and feed, I would have to buy my supplies there. But at somewhere<br />
around NZ$9.00 a bottle, it would cost well over £2,500 for enough to l<strong>as</strong>t me the whole 3 month trip. Also, the artificial<br />
nutrition available in <strong>New</strong> <strong>Zealand</strong> w<strong>as</strong> less nutritious than that which w<strong>as</strong> available in the UK, so I’d need to have more of<br />
it, in order keep my daily intake properly balanced. It all seemed very complicated and expensive, so we decided we would<br />
have to try and find alternative ways of getting my necessary feed supplies and medication.<br />
After some considerable research, (mainly by June), we eventually found out that the company that supplied the NHS had<br />
contracted to ship to almost any country in the world. As <strong>New</strong> <strong>Zealand</strong> w<strong>as</strong> on their list, they would deliver there, free of<br />
charge. We were delighted and upon contacting them, it w<strong>as</strong> confirmed that they would deliver my 3 month’s supply. All we<br />
needed to do, w<strong>as</strong> give them the address and a minimum of 6 weeks notice. Furthermore, they would deliver in 2 separate<br />
lots - one to North Island, and the other to South Island. That sounded encouraging.<br />
Next came accommodation. To stay in hotels or B&B’s for the whole three months, we found, would not only be be quite<br />
expensive, but would be awkward for my feeding regime. We needed to find some form of more suitable accommodation.<br />
We did have some friends in Devonport near Auckland, who would be more than willing to put us up for a while, but we<br />
didn’t want to impose ourselves on them for such a long period. Besides, we wanted to travel around and see <strong>as</strong> much of the<br />
country <strong>as</strong> possible.<br />
Eventually, after much more research by June, we came across home exchange.com, which sounded like an ideal solution. It<br />
works more or less like an on-line house-swap club for like minded people who enjoy travel. Each time someone stays in<br />
your home, you earn points which can be ‘spent’ by you staying in their, or another member’s home. With a choice of<br />
exchanges in around 150 countries including <strong>New</strong> <strong>Zealand</strong>, it sounded just the ticket for us. It also appealed to us <strong>as</strong> we<br />
could live within the community, <strong>as</strong> opposed to crowded tourist spots. Also, by staying in houses rather than hotels, we<br />
could have all the facilities of home, which of course would suit my feeding regime.<br />
We thus joined the Home Exchange community and immediately started contacting ‘Home Exchangers’ to try and arrange<br />
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<br />
w<strong>as</strong> not difficult and contrary to what our various friends at first thought, after nearly fifty exchanges to date we have never<br />
had a bad experience.<br />
Once we knew my nutrition and our accommodation w<strong>as</strong> do-able, the next thing w<strong>as</strong> to start looking at how we would get<br />
there. With a sixteen hour flight to Singapore, another twelve hours or so to Auckland, and allowing for travel to and from<br />
airports, I would need to carry quite a number of bottles of liquid feed and medications - certainly much more than w<strong>as</strong><br />
allowed to take on board with normal cabin baggage allowances. Without the necessary permission, airport security would<br />
have a field day confiscating all that liquid. It would also be more than most airline’s weight or dimension allowances. We<br />
therefore needed to be able to meet security requirements for the liquids and also to convince the airline that extra baggage<br />
allowance w<strong>as</strong> required for cabin, <strong>as</strong> well <strong>as</strong> in the hold for the medications and extra bottles of feed I needed in c<strong>as</strong>e there
w<strong>as</strong> any delay in receiving my shipment. At that time I w<strong>as</strong> having to take various medications in liquid form, so there were<br />
quite a number of other bottles, pills and extension tubes to take with me, <strong>as</strong> well <strong>as</strong> spare syringes and g<strong>as</strong>trostomy feeding<br />
tubes in c<strong>as</strong>e of blockages etc.<br />
I don’t know if being reliant solely on tube feeding would be cl<strong>as</strong>sed <strong>as</strong> a hidden disability, but we decided that for the<br />
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<br />
do, therefore, w<strong>as</strong> to obtain a letter from my GP stating that I w<strong>as</strong> totally reliant on liquid feed and medications which would<br />
need to be taken on board with me for the journey. Hopefully that would satisfy airport security restrictions, <strong>as</strong> well <strong>as</strong> the<br />
airline’s on-board baggage limits.<br />
The next thing we had to do, w<strong>as</strong> to find out which airline would be best suited for me. We thought Premium Economy<br />
would be the most convenient way to travel, <strong>as</strong> it would give me just that little bit more elbow room. I didn’t relish the<br />
possibility of being crammed into the middle row of economy trying to me<strong>as</strong>ure out medication <strong>as</strong> well <strong>as</strong> dispensing liquid<br />
feed from bottles into a more suitable container, with little or no elbow room to be able to use the syringe.<br />
Airlines differ in how they treat p<strong>as</strong>sengers with special needs. Some are really friendly and will bend over backwards to<br />
make your journey <strong>as</strong> h<strong>as</strong>sle free <strong>as</strong> possible, whilst others barely pay lip service to their obligation to accommodate special<br />
needs p<strong>as</strong>sengers. June put many hours into researching the various airlines that fly to <strong>New</strong> <strong>Zealand</strong> and eventually came up<br />
with Singapore Airlines, which seemed to tick all the boxes <strong>as</strong> far <strong>as</strong> my needs were concerned. Not only did they allow me<br />
to take extra hand baggage for my food and medication en-route, but they also gave me a generous allowance for hold<br />
baggage.<br />
It now looked like everything w<strong>as</strong> falling into place, so we decided to bite the bullet and book our flight for 23 rd November<br />
2022, returning on 23 rd February 2023.<br />
After carefully scanning the seat plan of the plane, we managed to book two seats at the rear of Premium Economy which<br />
backed on to the internal partition. This gave us a little bit more leg room <strong>as</strong> well <strong>as</strong> some additional storage space behind<br />
our seats <strong>–</strong> perfect. It w<strong>as</strong> all systems go and all we had to do now, w<strong>as</strong> plan where we would stay, using Home exchange<br />
points.<br />
However, things didn’t quite work out <strong>as</strong> planned. Not long after we booked our flight, we were informed that Fresubin had<br />
lost the contract to supply artificial feed and the ancillary equipment. Abbot laboratories would now be the new supplier of<br />
my liquid feed and it w<strong>as</strong> unclear whether they would agree to dispatch it to <strong>New</strong> <strong>Zealand</strong>. We quickly got in touch with<br />
them to clarify the situation regarding my travel plans, only to be told that they would not be delivering, <strong>as</strong> it w<strong>as</strong>n’t<br />
commercially viable. We were absolutely gutted at this! If I couldn’t get my supply of food, we would have to cancel the<br />
whole trip and lose our airline deposit. Initially, no amount of persu<strong>as</strong>ion on our part would make them change their mind,<br />
but after hours of telephone calls and countless emails, they eventually agreed that they would honour Fresubin’s agreement<br />
and on this one occ<strong>as</strong>ion only, ship to <strong>New</strong> <strong>Zealand</strong>.<br />
As we wanted to see <strong>as</strong> much of the country <strong>as</strong> we could but without rushing around too much, we decided on a circular<br />
route starting in Auckland, North Island, then over to South Island and finishing back up in the north. Fortunately our friends<br />
who lived in Devonport, a beautiful little town across the water from Auckland, were only too ple<strong>as</strong>ed to put us up whilst we<br />
explored the city and surrounding area. But more importantly, they would also accept advance delivery of my first lot of the<br />
Ensure 2Cal feed (10 c<strong>as</strong>es of 30 bottles each), and hold them for me. That w<strong>as</strong> a good start.<br />
The next job w<strong>as</strong> to find suitable transport during our stay. We needed to have a decent, reliable car that would not only be<br />
able to take our luggage, but also all my medical paraphernalia and bottles of feed. We had heard that some people, when<br />
visiting <strong>New</strong> <strong>Zealand</strong> for any length of time, bought a cheap second hand car and then resold it when leaving. However, <strong>as</strong><br />
we planned on covering a lot of miles, we didn’t want the uncertainty of breakdowns, so we decided that <strong>as</strong> our
accommodation costs would be minimal, we would spl<strong>as</strong>h out and hire a car in Auckland and keep it for the duration. It<br />
probably worked out a lot more expensive, but at le<strong>as</strong>t it would give us some peace of mind.<br />
By researching Home Exchange, June found exchange houses in both North and South Islands for almost the whole 3<br />
months. During that time, we explored very many towns, villages and locations throughout the whole country. We had a<br />
se<strong>as</strong>ide cottage in a quiet little North Island bay, we stayed on a working dairy farm, a vineyard where we had my second<br />
delivery of feed and finally a spacious bungalow in Wanaka, South Island.<br />
Amongst our many unforgettable experiences, were a helicopter ride on to a glacier near Mount Cook, where we donned<br />
crampons and explored ice tunnels. We jet-boated down part of the Frazer river over rapids and around rocks, then did the<br />
same on an iceberg littered glacial lake. We hiked on co<strong>as</strong>tal trails and mountain paths, flew over wilderness are<strong>as</strong> on a light<br />
plane, witnessed the wonderful waterfalls of Milford Sound and so very much more.<br />
All in all, our trip to <strong>New</strong> <strong>Zealand</strong> w<strong>as</strong> a truly memorable experience that will stay with us for the rest of our lives.<br />
Jim Turner<br />
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