Almost two years ago, Gary, a 45-year-old father of two, was diagnosed with a benign parapharyngeal schwannoma 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.
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. Unfortunately, his inability to swallow safely persisted and he had a gastrostomy 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. “The speech therapist gave me some exercises to help strength my muscles. I can now swallow custards, some thickened foods and yogurt – although I need to take my time.”
Initially, Gary and his wife Colette had a lot to learn about tube feeding and the Nutricia Homeward Nursing Service offered 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.” 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. “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.
“The smells of food are still tempting and make me want to eat,” Gary says. But while he misses eating and drinking, he feels comfortable joining his family at the table and chatting while they are eating. “I’d love to not have to be tube fed and to have a cup of coffee again,” he concludes. “But I’d tell people who are starting to tube feed that it isn’t the end of the world. 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; - https://uk.virginmoneygiving.com/GaryTaylor46
London Marathon - Sunday 22nd April 2018
If you are a healthcare professional you may wish to use the following link: www.nutriciahcp.com