A tumour in his neck means Gary Taylor has to be fed through a tube, but that isn’t stopping him. Catherine Scott reports.
A father of two who is unable to eat or drink anything normally is set to take on the London Marathon this weekend.
Gary Taylor, 46, from Halifax, wants to inspire others by showing you can live ‘a relatively normal life’ despite needing to be fed by a tube directly into his gut.
The electrical engineer was diagnosed with a rare parapharyngeal schwannoma tumour in his neck in 2016.
Although the tumour turned out to be benign, it required invasive surgery which means that Gary will probably never eat a normal meal again.
“I was told that I would be nasogastric tube fed for six weeks to recover from surgery but unfortunately after the surgery I struggled with this and needed a radiologically inserted gastrostomy (RIG) tube which then got changed to a Low Profile Balloon gastrostomy tube and I have been fed this way ever since,” explains Gary.
After losing more than five stone, Gary had to work hard to regain his strength and adjust to his new life.
“It took some time to emotionally adjust. I didn’t want to leave hospital,
“I had panic attacks to begin with and dinner times were tough, I used to grind my teeth as if I was chewing too.
“Now I’m becoming less self-conscious about my condition and I sit with my family and join in with the meal time conversations.
“It’s the simple things like having a cup of coffee that you can take for granted, but I focus on my family, keeping fit and feeling strong now,” Gary said.
Despite entering the marathon four times before the operation, Gary had never successfully gained a place.
Now, he is set to be one of the few – if not the first – London marathon runner to compete with a gastrostomy tube.
“I want to do this to show people who are starting to tube feed that it isn’t the end of the world,” says Gary.
“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.
“I’ve had huge support from my family, friends and my Nutricia Homeward nurse specialist. I know I can turn to them for anything and this has been integral to my recovery and training.
“The Nutricia Homeward Enteral Nurse and my hospital dietitian have even joined me on some of my runs and gone far beyond their ‘day jobs’ to help me realise my ambition and prove If I can do it, anyone can.”
Gary will require expert supervision throughout the run which has taken months of preparation.
He will need to carry and change a specialist backpack containing a mixture of enteral nutrition, water and electrolytes.
This will be delivered via a specialist feeding pump to help him get the right balance of energy and nutrients during the marathon.
The equipment will need to be changed three times during the run and a volunteer support runner will be on hand to assist with the equipment.
Martine Hartley, Nutricia Homeward Enteral Nurse Specialist said: “It’s been inspirational watching Gary’s determination. I know it’s not been easy, but he’s completely dedicated. Myself and the team are supporting him in any way that we can to live a normal life and ensure he has the right nutrition and advice he needs.”
Currently in the UK, around 50,000 people of all age groups receive enteral tube feeding to help with the dietary management of their medical condition or disease.
They rely on this form of feeding as a way of getting the nutrition they need, either as a sole source of nourishment or as a supplement to the diet.
Enteral tube feeding is a form of medical nutrition that’s delivered through a flexible feeding tube into the gut.
In Gary’s case it is delivered via a more permanent feeding tube called a gastrostomy.
To follow Gary’s journey or support his chosen charity visit: https://uk.virginmoneygiving.com/GaryTaylor46