Roy aims to spread word on rare cancer

Roy Holding, from New Springs, was diagnosed with neuro-endocrine cancer around three years ago and is currently having the benign tumours in his lungs monitored by health experts.

He is now looking to improve knowledge of the condition and also raise money for the NET Patient Foundation which supports sufferers and their families and funds research.

Roy, of Cale Lane, has already organised a coffee morning with his wife Jill, raising more than £600.

Roy, 62, said: “This is a condition not many people have heard of before and until I was diagnosed I knew nothing about it.

“Over the past few months I’ve started doing a few things for the foundation. I’ve started going to their groups in Manchester where you meet other people with the same condition.

“I’m also fund-raising for research because nobody really knows what sets it off. They want to know whether it’s genetic or who is perhaps most vulnerable to it.”

Roy says many of the early symptoms of neuro-endocrine cancer can be similar to other conditions, with his initial visits to the GP resulting in being told he had severe asthma.

However, when his health gradually got worse he was eventually booked in to see a chest specialist, which was when the tumours were found.

He has been at The Christie on and off since the illness was diagnosed and also visits Wythenshawe Hospital every few months for his lung functions to be assessed.

He has also had surgery to remove some of the tumours in his left lung but says he is still affected by the condition in daily life even though the remaining cancer is not malignant.

He said: “It affects me in different areas. When I’m going upstairs I get out of breath and it’s the same if I start walking too quickly or go up a hill.

“The condition can turn very quickly if it is not watched and I have to use a nebulizer every day to prevent mucus building up.

“For me it’s a bit like having a bad cold every day of my life. I have the mucus down the back of my throat and it gets into my chest.

“I’ve tried various things over the years and currently I have an injection and the nebulizer to keep everything under control.

“The tumours can be all over the body. Mine won’t move but they will always be there.

“I want to keep raising awareness of it. My doctor didn’t know about it so I want to promote knowledge of the condition among health professionals, so if people present with the symptoms and they are not going away GPs could suggest it might be something to do with this like it was with me.”

Roy and Jill held the coffee morning at Parklands in Ince and said the event was a massive success.

As well as bringing people together for a brew and to find out more about neuro-endocrine cancer they organised a raffle while food was provided by Fur Clemt.

They are now hoping to draw up a programme of further events for the NET Patient Foundation over the next 12 months or so as they think of ideas.

Their efforts have also earned the backing of local elected ward representative Coun Chris Ready.

He said: “Roy and Jill are a lovely couple and despite everything they are going through themselves want to make a difference.

“They haven’t done anything like this before but have a lot of people supporting them.”