Day 1 - A life changing experience

"I’m grateful it’s an option for me"

In my former life I had a successful business contracting in the construction industry. In 2015 I found myself facing major surgery to remove a cancerous tumour in my throat, which means I now depend on enteral tube feeding.

I’m going to be completely honest, I’d rather not have it. While it provides my nutrition, I find it a real bind. The positive aspect is that I’m grateful it’s an option for me. Realistically it also presents a number of challenges.
 
I’ve created a new life based around my feeding and having to carry the rucksack around all day. Yes, I’m mobile and it’s lightweight and easy to carry around but it gets in the way of normal activities. Doing the simplest of tasks means having to accommodate my rucksack and tube. I’m fortunate, I can have sips of water but nothing else; I miss food and drink along with the social interaction this presents. For me, I find it hard to sit and watch people eat. Usually I remove myself from this but still enjoy social activities without partaking in food. I’m not sure people realise how hard it is unless it happens to you.
 
My condition means that fitness is key to future health. I’ve taken an interest in cycling, walking and exercise and attend a number of different classes such as Yoga, Tai Chi and Chi Kung and to be proactive in trying to make a positive contribution to my own wellbeing. This comes with obstacles; juggling feeding and classes isn’t always easy.
 
Travelling is something I enjoy - when I can, I like to visit different places. Of course, taking the feed and all the kit is essential, there’s always a reminder that I’m dependent on enteral feeding.  
 
I had an incident which resulted in seeking some reassurance about being out in public with my rucksack; nothing serious but one thing led to another and I contacted PINNT to see if something could be done. This coincided with the launch of the PINNT medical tag. Through personal contacts I had been in discussions with Dorset Police and PINNT became involved. Through brainstorming and a shared commitment to offer support to fellow patients and security services, in this time of heightened security, the video PINNT is using during HAN week came to be. It was a gloriously sunny day when we filmed it; Bournemouth beach looked lovely and it was great to be part of a team which wanted to offer support and reassurance for those of us on home artificial nutrition. I’m proud and delighted that my original incident will lead to further awareness through the local police force and that it will be extended further afield.
 
So, life on enteral feeding isn’t something I enjoy, I am thankful it’s an option for me; being a realist I know I’ve got no choice but in an ideal world I’d love to be eating and drinking normally.

Steve