Battling prejudice and stigma - Dad’s story of living with a tumour

Lloyd Smith is fighting his third brain tumour.Pictured with his daughter, Sinead Rhiannon.
Lloyd Smith is fighting his third brain tumour.Pictured with his daughter, Sinead Rhiannon.

Sitting on a sofa in his modest home, a bandana round his head, Lloyd Smith tells me how 15 years ago he was a week from death without even knowing it.

After being nagged to go to for an eye test by his mother, opticians found signs of a tumour on his brain the size of an orange. Left for just a few days longer it would almost certainly have burst and killed him.

The signs were already there, but Lloyd didn’t know. He was spotted swaying and slurring his words when dropping his daughter Sinead off at the school gates – other parents thought he was drunk. But it was the tumour on his brain that was affecting his balance and speech.

Since being diagnosed with cerebellar hemangioblastoma, Lloyd has battled against prejudice and stigma from people who judge him without knowing the facts. That’s why he is wearing a bandana – Friday is The Brain Tumour Charity’s Bandana’s for Brain Tumours day.

A positive, intelligent and thoughtful man, he simply wants people to be aware of brain tumours and the damage they can cause.

“It’s the easiest thing in life to pre-judge,” said Lloyd, 56. “People are very quick to make assumptions and make their minds up on what they see and hear and not on the actual facts.”

Figures compiled by the charity found brain tumours were the biggest cause of cancer-related deaths in children and adults under 40 – but only two per cent of funding goes towards beating that form of cancer.

Life has not been easy for single dad Lloyd and Sinead. Lloyd has been called a paedophile, a drunk and worse. His windows have been smashed and all because he is different. He stammers and twitches and sometimes has episodes where he wanders off without knowing where he is.

It has affected Sinead, 18, too. Remarkably mature, she supports her dad when he goes off track or forgets what he is saying – a symptom of the four tumours still on his brain.

“People have called him a drunk to my face,” she said. “But they don’t understand what they can’t see.

“We stick out like a sore thumb on the estate.

“It’s affected social life. It’s hurtful but I just think ‘you don’t know what you are saying.’”

Sinead has had to grow up fast – she was three when her dad was diagnosed with a tumour. Her mum suffered serious mental health problems after her birth and left home, leaving Sinead and Lloyd to look after each other as best they could.

“I knew something was wrong from the age of five,” said Sinead. “I looked out for my dad as much as possible. If I knew he was having a bad day or having headaches I would tell my granddad because I couldn’t buy paracetamol.”

The pair have a strong family support network nearby, but they still struggled.

“I started to help more by taking care of myself to take the worry away from dad,” Sinead added. She cooked, cleaned and did anything she could to support him.

The scariest episode came two years ago when Lloyd collapsed on the kitchen floor. After his first operation, Lloyd was supposed to return to normality but the tumours had come back.

As the symptoms are similar, doctors at first diagnosed Lloyd with alcohol withdrawal. It took them four weeks to diagnose him with another tumour and a deeper genetic problem called Von Hippel-Lindau disease. It means tumours continue to grown in Lloyd’s stomach, pancreas and kidneys. He has to have tumours removed every two or three years.

“The hardest thing is coming to terms with the fact that my dad has a tumour that isn’t going to go away,” said Sinead. “I’ve grown up very fast knowing that every day my dad wakes up is a blessing.

“I’ve taken care of an adult whereas an adult should be taking care of a child. It has been emotional and hard.”

Sinead was 12 before she realised the job she was doing was that of a young carer. She spoke to a wellbeing centre and was referred to Northorpe Hall, a charity supporting children’s mental and emotional health in Kirklees.

In the summer she’ll be heading off to Huddersfield University to fulfil her dream of becoming a graphic designer.

Lloyd self-deprecatingly admits to plodding on despite his difficulties – at first, single-fatherhood was a challenge enough in itself.

“I thought I knew what exhaustion was in the army but believe me I was only in training! I nearly gave up so many times. I never cried so much in my life, out of frustration I think.”

His daughter was barely able to walk when he was diagnosed with his first tumour.

“I thought ‘I’ve done enough, surely!’ How much more do you want out of me?” he said.

“But now seeing her the way she’s turned out, starting off her life at university, I’m so proud of her. She’s turning into a wonderful human being. I’m just a proud dad – she’s helped me to endure.”