Ex-soldier John Palmer, from Dover, hasn’t eaten a meal in more than a year after suffering a stroke. Here he speaks to Julia Rogers about how dietitians from our Home Enteral Nutrition Service have been his godsend…
As John Palmer tucked into egg and soldiers one morning last September, he had no idea it would be the last meal ever to pass his lips.
While it may have been a fitting choice for the former colour sergeant, the 69-year-old says if he had an inkling of what was about to happen, he would have definitely picked roast lamb with all the trimmings.
But that day, the granddad-of-three was diagnosed with a paralysed epiglottis, the flap of cartilage at the back of the tongue, which prevents food from going into the lungs – and told he would never eat again.
John said: “I didn’t believe it at first. I just said, ‘And how long until you can fix that?’. When they said they was no cure, I couldn’t believe it.”
For the past year, John has been fed through a flexible tube in his stomach, known as a percutaneous endoscopic gastrostomy – or PEG for short.
His daily routine involves four “feeds” where he pours a build-up shake through a syringe connected to the tube in his stomach. If he eats anything, he risks food and drink going into his lungs and choking or developing an infection, which could kill him.
Even ‘drinking’ a cup of tea is a challenge and a two-handed job. “I have to swish it round my mouth to enjoy the taste and then spit it into a cup,” he said.
John was just 38 and serving in the army in Northern Ireland when he suffered a stroke, which left him paralysed down his left side and unable to walk, speak or eat.
He said: “I was under a lot of stress at the time. I was at an army dinner, sitting on a bar stool when my left side just went dead and my face dropped.”
It was a long road ahead and John spent three months in hospital learning to walk again, returning once a week for therapy.
“All I wanted to do was die,” he said. “My wife would come into the hospital and try and get me out of bed and I hated it. It was horrific. My son was 14 and he had to take me to the toilet. I didn’t know it then but I was suffering from depression, but it wasn’t diagnosed until about 20 years later.”
A smoker, John was diagnosed with COPD and bronchitis, where the lungs fill with mucus, about five years ago.
He said: “I was working at Connaught Barracks in Dover and was promoted to a job in Wiltshire and when I arrived I said I didn’t smoke, that’s how I gave up.
“I was getting repeated chest infections, because I had E-Coli in my lungs that had become resistant to antibiotics and I kept ending up in hospital.
“I had gone to the hospital for an injection to try and sap the bugs and I was just chatting to the doctor saying that every time I ate I coughed.”
Suspicious of what may be happening, John was booked for a barium meal, during which he had to drink while an x-ray was taken.
“The radiographer came rushing out, bent me over and started banging on my back. He had watched the fluid going straight into my lungs. That day I was told my epiglottis was paralysed and I’d never eat again.”
At first, John admits he couldn’t come to terms with it and has had a long battle with depression.
He was fitted with a PEG in September last year and in August, after a stint living in Hastings, moved back to Dover, under the care of our Home Enteral Nutrition Team.
“I’ve never had a service like the HEN team; they are incredible, especially Sharon Saunders, Julie Nimmo and Elizabeth Diamond.”
John said: “Julie went above and beyond late one night driving all over Kent to get a new part to fix my PEG and Sharon showed me how I can feed if my breaks.
“Sharon gives the impression she has all the time in the world; even though I know she hasn’t. I can’t find the words to describe how important she is to me; she’s a big part of my life.
“The worse thing has been the loss of control in my life. But Sharon never rushes me, looks at her watch or dictates. She’ll listen and then she’ll give suggestions of what we might do if I have a problem, like if I’m losing weight, and then ask me if that’s what I want, and whether I’d like it if she wrote to my doctor.
“She looks at the whole person – she’ll pick up if I’m a bit depressed and she’s been finding some stroke support groups for me.
“Initially, I was just given a vanilla meal – but Sharon told me there were five different flavours. It may sound stupid because I can’t taste them, but it’s about having some control, and I do get some reflux so then I can taste it.
“I’m also getting heartburn and feel bloated and Sharon’s advised changing my water and the size of the bottle which gives the same content with less liquid.
“Since I’ve had the PEG, the infections have decreased and I haven’t been in hospital with an infection in more than a year.”
John says while it’s a daily battle and he still struggles with depression, the Hen Team is helping to give him the quality of life to keep going.
He said: “I’m quite happy sitting with the family while they eat – I still enjoy the social side and will happily go out for meals with them.
“I have three grandchildren. I taught my eldest to swim and ride a bike and I want to be around to do that for Lilly-May, two, and Denny, four, also.
“It’s all about having quality of life and the HEN team certainly gives me enough good quality to want to keep going. I can’t thank them enough.”
What the HEN team does
THE HEN team launched in 2004 and works hard to support children and adults with feeding tubes at home – and avoid admission to hospital. This year, 98% of the people supported by the HEN team have avoided admission to hospital for a tube or feed-related problem.
Sharon, who has been with the team eight years, said: “Our caseload has tripled since we launched, as patients and babies born prematurely survive with more complex conditions as medicine advances.
“A lot of the work I did with John first, was listen. What struck me was how socially isolated he felt so it was about supporting him to get back to his exercise on prescription scheme.
“Then it was about trialling savoury products, tweaks to his feeding tube regime to reduce his nausea and bloating and generally trying to improve this quality of life.”