WARNING: this article features graphic post operative images
A kindly grandfather is being forced to live like a vampire, fearing that his “monstrous" appearance will scare people in daylight after cancer ravaged his face, leaving a gaping hole where his nose should be.
Struck down by nasal cancer, dad-of-three Stephen White, 51, from Exeter, Devon, has become a recluse since drastic surgery four years ago left him without any top teeth and with a cavernous hole where his nose used to be.
Now waiting for a prosthetic nose, his misshapen face means he could not wear glasses for years and felt unsafe walking outside at any time, as his vision is not perfect, while his confidence is in tatters.
A former sales assistant for a car parts company, Stephen, who is single and a grandfather-of-eight, said: “I scare my grandchildren and when I go out in the street I scare, not just children, but everybody. People look at me and cross the road to avoid me.
“The cancer was right in the middle of my face and I'm still waiting for a new nose. If it wasn't so visible I'd feel like I'd be able to date again. Really all I want is to fall in love.
“Before I had laser eye surgery last month, I could not see further than the end of my arm without my glasses. I couldn't put my glasses on because there was nothing to rest them on."
“I couldn't go out because I couldn't see to cross the road and would be paranoid about bumping into people, as I couldn't see them until they were a yard in front of me," he continued.
“Then they would look at my face and see I didn't have a nose. It destroyed my self-confidence and I now have no self-esteem.
“I became a prisoner in my own home, only going out at night time like a vampire, and with my hoodie up, when there was less traffic and less risk of me bumping into people who would judge me."
Stephen, who has not been able to work since May 2015, was first alerted to something being wrong in March 2015, when he had a cold and noticed his nose was bleeding.
“I would be looking down and a droplet of blood would come out of my nose, or when I went to blow it there would be blood," he recalled.
“About a week later, I visited a doctor who put me on a two-week course of antibiotics, but it was still bleeding."
Returning to the doctors a few weeks later, he was referred to hospital where he had an MRI scan, which showed the bone in the centre of his nose had been eaten away.
“I was diagnosed with cancer in the nasal cavity in May 2015. It was on the right side of the cavity, going through the nose and working its way backwards towards my brain," he said.
“It was a real shock. It's such a rare cancer that they hadn't seen anything like it before. There were about 15 people in the room discussing what the options were."
According to the NHS, nasal cancer is very rare. It develops in the nasal cavity behind the nose and most often affects men over 40.
Told in May 2015 that he would need surgery so doctors could see how far the cancer had spread through his nasal cavity, and whether there was a risk of it reaching his brain and spinal cord, in July Stephen went under the knife.
“They were talking about having to remove my nose altogether and fitting a prosthetic, or cutting into it and replacing the bridge with bone from my rib and skin from my forehead," he recalled.
“But they didn't really know what they could do until they'd cut it open. I can't remember how long the operation was but it felt like it took hours.
“When I woke up, I had no teeth, top palate or nose because they saw the cancer was attacking my palate and gums. And they removed my teeth anticipating that the radiotherapy treatment later on would destroy the enamel and they would rot away. I couldn't speak because my teeth had gone.
“The cancer had been discovered in my nasal cavity. It had gone under my right eye and worked its way to my nose. It got into the fleshy part of my nose above my teeth, and was working its way to the back of my head, but had stopped between the spinal column and brain."
“I had this big blood plaster stapled onto my face. It looked like a creature from the film Alien and I just burst into tears," he continued.
“When my daughter showed me my face I just thought, 'There goes my life. I'm going to be the scariest person walking the streets. People will think I'm a monster.'
“I was also worried in case they hadn't got all the cancer out. I wanted to survive to see my grandchildren grow up."
Stephen, who is separated and does not want to name his children, spent three days in hospital before returning home, where he was cared for by his mum Vicky Forder, 70, and her husband Peter Forder, who is in his sixties.
He returned to hospital a few days later to have the staples removed and was given a day course of chemotherapy.
But, after being violently car sick returning home because he could no longer wear his glasses and could not see properly, inducing nausea, he was admitted to hospital for a further five days to help him cope with the after effects of the chemotherapy and get his nutrition levels up.
Then five weeks after the operation, Stephen had eight sessions of radiotherapy to try and get the rest of the cancer, which was deemed successful.
With the cancer now under control, the flesh around his nose had started to heal properly and in October 2015, he was told that, although there was still a small bit of cancer between his brain and spinal cord, it was benign.
Requiring monthly check ups and six monthly MRI scans until October 2018, he was warned that despite the cancer no longer showing up on the scan, there was a chance it might become active again if it moved or spread.
Stephen was left with a gaping hole in his face, no teeth and unable to see properly, as he could not wear glasses and he finds contact lenses uncomfortable.
Only able to eat soft food like mashed potato, soup and casseroles, with everything chopped into small pieces, even today, Stephen was also fitted with a new palate and a top set of dentures in July 2015, shortly after the operation.
Sadly, as they move around, and because wire dentures that were fitted to the bottom were too uncomfortable, he still finds chewing very difficult.
In May 2017, he had three magnetic studs fitted to his face, so a prosthetic nose could be attached, but they did not fit properly and had to be removed.
Stephen explained: “It's like there are three pieces of a jigsaw that need fitting together, my palate and teeth are one part, the second is the obturator, which is like a cone shaped prosthetic device that attaches to the top of the dentures and fits where my nose goes, and the nose, which will attach to the obturator.
“It's not quite worked yet because my situation is so rare and there are different people having to do different things."
Stephen continued: “I have been back and forth having adjustments to the obturator to make it fit comfortably and have appointments booked in the next couple of weeks to discuss fitting my nose to it, so I hope they will be able to help me.
“I can still breath and swallow, but if I'm moving around and it's dusty, that will go into my throat through the hole in my face. If I'm talking, I can't breathe in and out at the same time.
“I have to wear a plaster across my face to stop my nose running."
He said: “There's been a lot of trial and error with it. I would love to have some new bottom teeth that would allow me to eat Honey Nut Crunch for breakfast again instead of Weetabix.
“It would also help with talking and would give me my smile back."
Also unable to get laser eye surgery on the NHS, as he says he does not meet the requirements, Stephen dipped into his pension pot to pay for it – successfully having his right eye, the weaker one, done last month, costing £3,795.
He anticipates he may need his left eye, the stronger one, done in the future.
Stephen recalled: “An optician was sent to see me provided me with glasses that fitted like ski goggles, but air would come out of the hole in my nose and steam them up all the time. It just didn't work. When I walked they would slip down my face.
“But the laser eye surgery has improved my life 100 per cent. I just wish it could have happened four years ago."
“I can walk across the road without fearing I'm going to be run over," Stephen said.
Sadly, however, Stephen's confidence remains at rock bottom.
“I'm not working now and I have no self-esteem," he said.
“If I have a doctor's appointment I try to go either in the evening or early in the morning when it's still dark, so I'm less likely to bump into people.
“I used to go and visit my grandchildren on the train, but I haven't done that for years because I'm scared to be near all the people.
“Mums with prams will steer their buggies away from me. I look at people and they will cross the road. It's soul-destroying."
Stephen added: “Now I would just like to find love. I want to find a girlfriend who will love me like I would love her.
“I think once I have my new nose I will feel more confident to go out and meet someone. I used to go to the pub and see friends, but over the last five years that's gone down the toilet. I just want to be treated like a decent human being."
Family members are now trying to raise money via GoFundMe to help Stephen get back on his feet and pay for any remaining work he may need doing, as well as to buy him a car, so he can visit them and have a social life.
To donate visit www.gofundme.com/f/get-stevie-back-on-his-feet
