Adult

Enterally Fed Patient To Run London Marathon!

If you would like to support Gary and donate to PINNT please visit:


Gary's Virgin Money Giving Page


Almost two years ago, Gary, a 45-year-old electrical engineer from Halifax, was diagnosed with a benign parapharyngeal schwannoma, a non-malignant neural tumour close to his salivary glands. He now feeds through a low profile gastrostomy (LPG) tube. Yet Gary is living proof that “it is possible to live a relatively normal life while tube feeding. You can do anything you used to do”.

Gary remains a keen footballer, belongs to a running club and, remarkably, is entered for this year's London Marathon - one of the few, if not the first, to compete with a gastrostomy tube. He hopes his story will inspire other people who need to tube feed to live full and active lives. “If I can do it, anyone can,” he says.


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A long way in a few months

When he was diagnosed, Gary didn't feel ill. “I'd always had a 'lump in my throat'. I sometimes found breathing or swallowing difficult and I snored heavily. I'd been told it was my tonsils but, as I don't like hospitals, I didn't have them removed. After I suffered a groin injury playing football, the doctor checked me from head to toe and discovered the schwannoma”.

The father of two says: “Initially the doctors were not sure whether the lump was benign or cancerous and I was really worried. We tried to keep things away from the kids until we knew the results, but it was still hard telling them. To make matters worse, I was really worried about work and the possible financial impact of the diagnosis.”

Originally, the medical team told Gary that he would need nasogastric tube feeding for six weeks while he recovered from the operation to remove the schwannoma. He was not, however, able to cope with the nasogastric feeding and received a radiologically inserted gastrostomy (RIG) tube. Gary's inability to swallow safely persisted and he had a low profile gastrostomy (LPG) tube fitted about 18 months ago. “I was very weak at the start, but my weight is increasing and I'm getting stronger,” Gary adds. Originally weighing 16 stone before the operation, his weight fell reaching a low of 11.5 stone, but is now steady at about 12 stone. 

“The doctors haven't been able to find a medical reason why I can't swallow, so the speech therapist gave me some exercises to help strengthen my muscles,” Gary says. “I can now swallow custards, some thickened foods and yogurt - although I need to take my time.” 

“Gary has come a long way in the last few months. Initially, he could only eat a teaspoon sized amount in 20 minutes - he can now eat a pot of yogurt in the same time,” says Colette, his wife. “We've come to terms with the fact that Gary probably won't eat a full meal again. So, anything else is a bonus.”

Even more active…

Gary is now even more active since he became established on gastrostomy feeding than before his diagnosis. Nevertheless, Gary and Colette had a lot to learn, even though they had a head start. “I'm a teaching assistant at a special school.” Colette says. “Many of the children at my school are tube fed so I already knew a fair amount about tube feeding, such as how to use the pumps. It's still been a steep learning curve and we needed a lot of support at the start.

“Unfortunately, while we were relieved when we were told this wasn't cancer, there is far less support for benign tumours than there is for cancers,” Colette comments. “Very few websites offer information and there are no dedicated support groups we can turn to.” Collette spent hours on the net, but found that most of the information about tube feeding is aimed at children. To help meet this need, Nutricia's website http://www.tube-feeding.com answers common questions adults and families have about tube feeding at home.

In addition, the Nutricia Homeward Service and the Nutricia Homeward Nursing Service offered Gary and Colette support and advice. “It's reassuring to know there is someone I can ring if I have any problems,” he says. “We know we can turn to our Nutricia Homeward Enteral Nurse Specialist for anything, she is always there and has been a huge support.” 

“It's nice to know that, as well as Gary, I can phone her,” Colette says. “We know that if there is a problem that can't be dealt with over the phone she will come around as soon as she can.” The Nutricia Homeward Service ensures they have sufficient supplies and they plan to use the Nutricia Homeward Holiday Service when they go to the Canary Islands later in the year. 

“The impact of tube feeding has been much less than we expected at first,” Colette adds. Nevertheless, Gary took time to adjust emotionally to tube feeding. “I didn't want to leave hospital; I was very frightened and worried about coming home,” Gary admits. “I just didn't feel safe and I worried about aspirations.” Colette says he had panic attacks and needed several return visits to hospital. 

“Now things have settled, I'm able to get out more. I'm back at work and I can focus on keeping fit,” Gary says. “Tube feeding has given me back the ability to have an active life. I can do everything that everyone else can do.”

Part of family life

Gradually, tube feeding has become part of the family's life. Gary used to go to the gym or practice his physiotherapy when the family was eating. He is now happy to bolus feed around his immediate family. 

Colette adds that “Gary was always a bit of a foodie” - and he can still find mealtimes difficult. “When other people eat, I tend to grind my teeth as if chewing,” Gary says. “The smells of food are still tempting and make me want to eat.” But while Gary misses eating and drinking, he now feels comfortable joining his family at the table and chatting while they are eating. “Colette even bought me a wooden Christmas dinner, complete with cheese board and chocolates,” Gary says. “It cost as much as a real Christmas dinner, but at least it'll last for ever.”

“I'd love to not have to be tube fed and to have a cup of coffee again,” Gary concludes. “But I'd tell people who are starting to tube feed that it isn't the end of the world. Don't just look at the downsides. You will sometimes feel down. You will sometimes feel afraid and you will come across hurdles that you need to work around, but you can do anything you used to do. I still work. I still play football and I'm running the London Marathon.”


If you would like to support Gary and donate to PINNT please visit:


Gary's Virgin Money Giving Page