Rare cancer ate away man’s nose, forcing it to be amputated
By
Lucy Jones, The Sun
Published Nov. 29, 2019, 12:55 p.m. ET
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Getting the train to visit his grandchildren, going to the shops in the daylight and heading out for a walk are all things Stephen White can no longer do.
The kindly grandfather, 51, is terrified of scaring people when they see him — after cancer ravaged his face and left a gaping hole where his nose should be.
And the devastating ordeal has crushed White’s self-esteem to such an extent — he now feels as though he has to “live like a vampire”.
“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,” the dad-of-three, from Exeter, Devon, England said. “Really all I want is to fall in love.”
White, who used to wear glasses, also had to get laser eye surgery after the ordeal.
“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 added.
“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.”
White’s nightmare began 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.”
White returned to the doctors a few weeks later as his symptoms got worse and he was referred to hospital for an MRI scan. Much to his horror, the results showed the bone in the center of his nose had been eaten away.
The former sales assistant for a car parts company said: “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. 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 National Health Service, nasal cancer is very rare and it most often affects men over 40.
In May 2015, White was told 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.
He went under the knife two months later in July, which changed his life forever.
“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,” White recalled.
“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.
“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.”
White, who is separated, spent three days in the hospital before returning home, where he was cared for by his mom Vicky Forder, 70, and her husband Peter Forder, who is in his sixties.
He returned to the 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 the hospital for a further five days to help him cope with the after-effects of the chemotherapy and get his nutrition levels up.
White was then forced to have eight sessions of radiotherapy to try and get rid of the cancer five weeks after the operation, 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 part of the tumor 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.
White 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.
“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,” White explained.
“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.”
White is currently still waiting for his prosthetic nose.
“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,” he added.
Also unable to get laser eye surgery on the NHS, as he says he does not meet the requirements, White dipped into his pension pot to pay for it — successfully having his right eye, the weaker one, done last month, costing $4,904.
He anticipates he may need his left eye, the stronger one, done in the future.
Sadly, however, the dad’s confidence still remains at rock bottom.
“I’m not working now and I have no self-esteem,” White 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.”
White is now hoping that he might get a confidence boost if he can find love.
“Now I would just like to find love. I want to find a girlfriend who will love me like I would love her,” he said.
“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 him 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.