Holiday booked!

You may know that me and Hubby really wanted to take the kids abroad this summer. But because of all my hospital admissions and how difficult it was to get travel insurance that dream died a death and we ended up in Whitby. Now don’t get me wrong, I know there’s plenty of people out there that would give their right arm for a weeks holiday anywhere, including Whitby, but for me it felt like I had failed again. 

For the last couple of years I had got a bee in my bonnet about us having a holiday of a lifetime in Summer 2023. Both the kids were doing exams which meant that by the end of June they would be finished and we would be free to go away before the prices skyrocketed during school holiday times. 

We first talked about going to South Africa as the netball World Cup was taking place and Big Girl said it would be  a dream come true to go. We thought we could team it with a safari and have an amazing time. But when we saw the temperature in July in South Africa we knew the heat would just about kill me and then the logistics of me on safari wasn’t going to work. Having to be hooked up to feed and needing the loo up to 30 times a day was going to make it all a bit tricky shall we say. 

So then I thought about a cruise as I knew they had great medical facilities on board. But Hubby didn’t fancy that. 

Then I found a brilliant deal to Mexico in a hotel my parents had stayed in and liked and I got carried away planning what trips we could go on and the sightseeing we would do. But when I tried to get travel insurance most companies turned me down and the only one that didn’t wanted nearly £3000 to insure me! So Mexico was out. 

So then I started looking at places in Europe and found a couple of potential places in the Greek Islands but then I read that you can’t flush loo roll there and so then they were out too. Could you imagine not being able to flush the loo paper when you have bowel disease? I know they say to stick it in a nappy bag and that the cleaners are used to it there but I would end up with a bloody mountain of nappy sacks and I just don’t think I could deal with it. 

So then I thought, look even closer to home and we settled on Salou in Spain. I had found what seemed to be the perfect hotel, had found travel insurance at under a grand and we were all ready to book when I was admitted to hospital in May. And then again in June. And again in July. And then by the time I was out in August Big Girl had booked some holidays herself and we couldn’t find a date that the four of us could all do before Big Fella started college. Which is how me, Hubby and Big Fella ended up in Whitby. 

But I hadn’t given up the dream of taking the kids away on a plane. The last time we flew was about 8 or 10 years ago when we went to visit friends in Germany. I had a Hickman line then so had all the hassle of flying with my feeds. But we had rented a house so I knew there would be enough room in the fridge for it all and although we were going to a foreign speaking country my friend would be able to translate should the need for medical treatment arise. Plus we were 5 minutes down the road from the nearest A&E and we had hired a car so could get there easily if we needed to (thankfully we didn’t!)

So the good news is that we have actually managed to book a holiday to the Canary Islands and we fly in October half term. Aaaahhhhh 😬🫣🎉 So many emotions. The bad news is the logistical nightmare that I now have to contend with. 

Going abroad scares me for lots of reasons. If I need medical treatment and I can’t speak the language it’s going to be a nightmare. Most doctors in A&E in this country struggle with me as a lot of what is wrong with me and the treatment is pretty rare and unique. So imagine trying to explain it all in a foreign language!! We most likely won’t have a car so if I’m not well then that will probably mean an ambulance trip to hospital. Again with language barriers. And because some of my allergies are really severe and cause anaphylaxis and/or fits I am terrified I could be given the wrong meds and end up dying. And after my experience of getting ill in Cornwall and the nightmare of being transferred back to Nottingham I can only imagine what an even bigger nightmare it would be if I had to be repatriated back to the UK. 

Then there’s the whole flying with TPN situation. Let me explain what I have had to do for this holiday…

Before I even booked the holiday I rang the holiday company, Jet2, on their special assistance line to talk to them about my needs. I wanted to make sure they could accommodate it all before spending my money. And then after booking I had to call again with more details.

The first hurdle is the fact that I need to take approximately 30kg of medical luggage for one weeks holiday. Yes, 30kg!! I need to take 7 bags of feed and they weigh 2kg each. Then I need to take at least 7 bags of saline incase it’s hot and I start to dehydrate. They weigh 1kg each. Then I need to take a couple of bags of extra feed that don’t need to be refrigerated incase there are delays in the airport like there were a couple of weeks ago when the systems all went to shit and nobody could fly for days. So that’s another 4kg. Already we are up to 25kg. The feed has to be refrigerated so has to be packed in special polystyrene boxes with ice blocks (think the kind they put fish in to transport them). These will probably weigh about 5kg so that’s me up to 30kg. Then I need to pack my special rucksack that holds my feed overnight, the pump (and a spare one because of the pump broke abroad I would be buggered) and all the supplies I need to be able to connect and disconnect in a sterile manner. So it’s probably closer to 35kg or even 40kg. Bloody hell, they’ve only agreed to 30kg- maybe I need to call them back.  

Jet2 have said they would fly it all free of charge but I needed a letter from my doctor on headed paper stating the need for it all. So I had to get in touch with my team at the hospital to ask them to do that for me. 

Then I had to ring the company that supplies my feeds to sort out the holiday arrangements. They require 6 weeks notice for holidays so I only just scraped in. Because of the dates of my holiday it will interfere in my fortnightly feed schedule so we have had to rearrange some deliveries. Then you can either get them to pack the feed in the cool boxes and meet you at the airport the day you go or they can send you the boxes and ice blocks and you can pack yourself. I’ve opted for the latter as I read in one of the TPN Facebook groups about a woman whose feeds got stuck in traffic on the way to the airport and then she missed her flight because they hadn’t turned up. Not wanting to leave anything to chance the control freak in me thinks I will feel better if I pack it all and transport it myself. Even if it means we won’t fit it and all the suitcases in one car so will have to take two cars to the airport, therefore doubling the parking charges. 

I have a list of about 40 medical items I will need to take and if I forget even one of them it could be a potential disaster as it would mean I couldn’t hook up to my feed and would therefore have to either go to hospital or head home. And I keep imagining what would happen if my medical luggage got lost. I can’t dwell on that otherwise I will have a panic attack. 

I also needed to make sure that there would be enough space in the fridges where we are staying for me to store my feed. As we have booked two rooms and they’re self catering I’m pretty sure I will be able to fit the bags in but if we went for two weeks anywhere that would be a worry. I could take non refrigerated bags but they are not the same and are not an exact match for my prescription. They’re ok to be used short term for a holiday but one of the issues is that they have 3x the amount of calories in. They have so much more because it’s needed to stabilise all the other electrolytes and things that are in the feed without the need for them to be refrigerated. And because I don’t fancy putting on a ton of weight that’s why I’ve decided to take the refrigerated bags and just take 2 non refrigerated bags in case of an emergency. 

As well as my feeds I’ve got to organise my medications and make sure I do all my repeat prescriptions in time. And because some of the medication is what’s known as a controlled drug I have to make sure I have the right paperwork to take it in and out of the country. 

Add to this the hours and hours I have spent on the phone to insurance companies trying to find someone that will a) insure me and b) not require me to remortgage my house to pay for it. I can’t even do online quotes cause all my health issues seem to send their systems into meltdown and tell me I have to ring them. Originally I was thinking of getting annual travel insurance in the hope that if I had that we could try to get a few more trips in over the next 12 months. But either the companies wouldn’t offer it me or the couple that did wanted to charge me thousands of pounds. I rang one company and the lady I spoke to advised me to do single trip cover. She said that to an insurance company insuring me for a year was high risk given all my medical issues and hospitalisations so I was more likely to get insurance for a single trip policy. So that’s what I’ve ended up doing. 

Just thinking about all this stuff makes my head hurt and also makes it quite difficult to get excited about the holiday. I think when we’ve landed and got all our luggage off the carousel I will be able to take a deep breath and know that everything will be ok. But until then I can’t relax. I feel perpetually sick and my anxiety levels are through the roof. I have lists of lists and every day there seems to be something else I need to do or organise or something else to add to the list. I really envy people that can just decide to jet off for a last minute holiday or think ‘ooh, let’s do a city break next weekend’. The planning involved for me is military in style and like a full time job. I just hope it will all be worth it. Watch this space…