Supporting the

Neuroendocrine Cancer Community

On the whole, travel should be fairly easy in everyday life, with the odd curveball thrown in here and there…. Happens to us all.  I am not talking about just nipping out, but about going out for the day, a weekend away, something longer, or maybe just a nice meal.

But when you have a cancer diagnosis to contend with it can take on a whole different meaning.  It is no longer about getting from A to B in the best way possible, there are numerous other things to consider before you even get out the door:  what facilities are there along the way and when I arrive? Will I be comfortable? Have I got enough and/or the right medication with me? How long will it take?  To name just a few.

If anyone had asked me before my diagnosis about what I take with me when I am travelling, not matter how long the journey or where I am going, I would most probably have said so long as I have the basics I will be fine, if I forget anything I will manage or I can buy it.  Not any longer though.

The most important thing to remember though is that you are allowed to go away and have a good time.  It is good for you on so many levels, and if you are prepared you will reap the benefits.  Please don’t be daunted by the prospect.

Previously a day out may have involved a small list of some sort, and overnight stays of any sort have always involved a list, mainly to make sure the correct clothing and toiletries were all present and correct.  Not any longer though…

So after living with Neuroendocrine cancer of the small bowel for over 7 years and enjoyed many days out and holidays both here and abroad. I thought I would share some of the tips that I have acquired along the way.

Firstly I will deal with the things I do to make every day travel easier:

  • Wallet cards – I always have a set in my bag, and I have a set in my toilet bag to so as I know when I pack I have spares with me. These are available on the NCUK website, or if you attend a Natter you may be able to pick some up there.
  • Nutryzym/Creon – if you need to take some of these with your meals, instead of taking the big bottles out with me everywhere I use an old fashioned lipstick case as I had problems finding something big enough, it fits in my bag nicely and looks nice on the table. There area all sorts of lovely designs out there and you can get plain ones as well;-)

  • Medication – If I need to take meds whilst I am out, as well as my lipstick case, I will use another pill box to put in what I need for the day, and if I need liquid pain relief I use syringes with the right amount in, with little caps on the end to stop any leakages. These can also be purchased on-line, and I put them in a small zip up case designed for the diabetic syringes.

  • Toiletries – Also in my bag, due to sometimes having an urgent need for the toilet, I always make sure I have a little bag in my bag to help with hygiene. A small slim case for sanitary towels, tissues (you never know when the loo roll will have run out), toilet wipes that are flushable, clean knickers/pants and nappy sacks to mask any left-over odours associated with clean up and cannot be flushed away or put in the sanitary bins.  I have also recently found a great alternative to flushable wipes, a gel that you put directly onto the toilet roll.

  • Radar Key – these are the keys that open the majority of disabled toilets, again I have them stashed everywhere including one in the car. They can be easily purchased online and are not expensive.  They have been a life saver many a time.
  • Sunflower Card – not just for use at the airport, if you are out and about and need some help these are a way of indicating that you have a hidden disability, trains, buses and supermarkets now recognise them to (most of time).
  • Disabled Railcard – if you are on certain benefits you can apply for one of these, especially useful when booking a train journey with no seat allocation, as you can ring and request to book a seat.

Secondly, if you are travelling for any length of time, all of the above applies with a few extras:

  • Always make a list, I know it sounds like I am preaching, but I cannot emphasis enough how important this is. In fact when you have made your list turn it into a spreadsheet on your PC, laptop or mobile device.  Then you have it there whenever you need it.  Easy to update to.
  • When packing if you can use a set of weekly pill boxes for your medications, they take up less room, and means you only take what you need. If you use heat packs as pain relief, make sure one is included, and if you use one that can be heated in a microwave check that your accommodation has one, otherwise a good old water bottle will do the trick.  I have one that stays in the case.
  • When travelling in this country I will always check our route to make sure there are easily accessible toilet stops along the way. On the motorway you are fine, but once you are on the A roads or B roads, some of those gaps can be long.  Always make sure you have your toilet card with you just in case, and there are “Toilet Finder” Apps that you can load onto your phone that may help to.
  • Whether travelling here or abroad, always make sure you have an up to date copy of your prescriptions and latest consultant’s letter just in case. I know you can keep them on your phone, but it is always handy to have paper copies too.
  • If you are travelling abroad, make sure your consultant has passed you as fit to travel, and provided a letter to back this up.
  • Never travel abroad without adequate travel insurance, and book it as soon as your holiday is booked. The “British Insurance Brokers Assocciation” (BIBA) is a good starting point, as well as asking other patients via the forums who they have used. Neuroendocrine Cancer UK provide this Travel Guide on their website.  Also try to avoid applying online, and speak to a real person, and if you are in travelling in Europe also apply for a European Health Card (EHIC).
  • At the airport wear your sunflower lanyard, and if you need help ask for it. Staff should help you get through all the check points without too much stress, you can make yourself known at customer information before you go to check-in, especially helpful if your travelling on your own.  If you haven’t got a sunflower lanyard before you get to the airport, they should be able to provide you with one.

Make-sure you have your letters and prescription easily to hand, especially at security if you are taking prescribed medication through in hand luggage.  It should pass through without any problems so long as it is in the clear plastic bags, and if you have liquid meds over 100ml tell them before they put it through the scanners.  This is where the syringes can come in very handy, so long as you take them out of the case and put them in a clear bag too.

Finally enjoy your trip, no matter how long or short