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Gary’s Story

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Gary lives in Halifax, West Yorkshire with his wife Colette and their two children and works as an electrical engineer servicing life safety systems such as smoke extraction in high rise flats and underground car parks. His life was turned upside down when a rare tumour was discovered in his neck, and the operation to remove it left him unable to eat in the same way he had previously. With the help of Nutricia Homeward, and his dietitian he now takes part in various activity based challenges to raise money for charity.

 

There’s no real label for the condition I have, so things are a bit different for me. But I had a rare tumour which grows on your nervous system, and in my case it grew in my neck. Luckily, it was benign, so that was a positive. It grew slowly over the years, so when I went to the doctors they said there was a problem with my tonsils, and I thought I could live with that because I don’t like surgery and I don’t like hospitals.

Then one day, playing football, I had a groin injury. I went to the doctors and after some scans and body checks I was rushed to hospital as I had a tumour that needed to be looked at urgently.

The surgeons said that even though it was benign, they would have to operate. They said that they would have to cut from the bottom of my neck, up to my Adam’s apple, all the way to my ear and then break my jaw and remove a tooth just to be able to reach it, and after that I would have to be in intensive care for three to four weeks. All I could think of while they were saying all this is how the alien’s mouth opens up in the film Predator. Then I was thinking about how I was going to tell the kids, about money worries and things like that.

After I had the operation I was unable to eat and drink. My left vocal cord was paralysed, the left side of my tongue was paralysed, I couldn’t pronounce words and my voice was a lot quieter than it was before. At first - right out of the surgery - I had no voice at all, so all I could do was write on a whiteboard; if I was annoyed while talking to the kids I had to put it all in capital letters so they knew I was shouting at them! So we tried to have a bit of fun with it as well. I wanted to be light-hearted with them because I didn’t want to tell them that I was petrified.

I had to have a nasogastric tube fitted, which basically fed me for 22 hours a day, from a pump. That wasn’t working for me; because of the operation to my neck, I was coughing up quite a lot. And at one point the tube piled up in the back of my throat. At that point they decided they were going to give me a percutaneous endoscopic gastronomy (PEG) feeding tube instead. So I had another operation to have this fitted. Now, though, I’ve got a mini button which is fine as it’s very discreet and easy to use. 

Nutricia has helped me in so many ways throughout the process. It was a real comfort knowing I could call at any time if I was unsure about the equipment. I was able to phone up and they’d talk me through what to do, or they’d even come round after work hours if that was necessary. They were just fantastic.

It was very hard for my family to talk to me about it because I was so angry a lot of the time. But Nutricia were able to come in and help my family as well; talking to my kids about whatever questions they had, helping them understand what was going on, as well as being a middle person between myself and medical staff or dietitians. So I can’t speak highly enough of what they’ve done for me and my family. In terms of supporting us along the journey I’ve had - and they still do. I’m kind of lost for words to describe how good they’ve been to us all.

My Nutricia Homeward Nurse was Martine, and I felt we struck gold with her. She’s unbelievable; so professional, knowledgeable, patient and supportive. She’s gone above and beyond what she needed to do - as my recovery progressed, she started going out running with me, and I’ve helped her do the Great North Run. She’s also joined the running club I’m in called Snails! Martine is more like a friend now than my nurse - she’s amazing.

I’ve always been a sporty type of person, playing football and running - I always did a bit of running but never as much as I’m doing now. It’s really helped with calming me down and getting me out of the house, especially when COVID struck - because that set me back like it did a lot of people. Joining a running club is one of the best things I’ve done; it’s not about racing each other, it’s about meeting up with people and talking - not about my condition, but about anything. We never leave anyone behind, so you’re never alone - it helps you forget about your worries at work or at home, and you’re just happy for a few hours, or as long as it takes for you to go wherever you’re headed.

I’ve done the London Marathon twice now, and there’s some specific equipment that I need to be able to do that. Nutricia sent me a backpack that holds a stand, so I have a pump while I’m running the marathon. I fill the pump with electrolytes because I know I’ll be sweating a lot while I’m running. I have a support runner called Tim from Nutricia who has done the London Marathon with me both times, and he has a back-up device in case mine fails - so I carry one backpack and he carries the back up. Meanwhile, my wife Colette is waiting for me at set points along the route - at 12 miles, at 20 miles - with an extra backpack, pumps and electrolytes set up ready for me to swap so I can keep going. Because it’s all about getting the time below four hours for me!

My next challenge is an ultramarathon called The Wall, which is a 70 mile run in the region of Hadrian’s Wall, and I’m doing it to raise money for PINNT - a support and advocacy group for people on Home Artificial Nutrition. I’m feeling confident and I know I’m going to complete it - maybe not within my ideal time, but definitely within the timeframe that’s allocated for the run.

It’s all about raising awareness of what’s possible for other people in my situation. I’m sure not many people want to go to the extremes I’m going to, but the point is not to give up. For some people, it’s getting yourself out of bed and into a chair that’s a challenge. But don’t give up. Whatever the challenge is, take it one small step at a time, take it steady and you will achieve it. 

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