Early Career Researchers

Rebecca Fogell is a Patient at Leeds Teaching Hospitals

Rebecca Fogell was working as a Community Matron and doing her Masters in Advanced Practice, when she found a lump on her nose in 2019, aged 46.

“Initially, we thought it would be an infected tear duct, as it was thought I was too young to have a nasal cancer. But it was found to be a Grade Four cancer that had grown into my sinus, my nasal bone, eye socket and facial nerve – it was just huge. From the start, they said this is going to be life changing. If it was left it could have gone to my brain.”

Rebecca says: “It was really traumatic, going from everyday life to that. I had major facial surgery taking the tumour out. They replaced my eye socket and part of my nose, with titanium plates, removal of facial nerves and I had some teeth taken out.”

Although a success, there was still some positive margins of cancer left. She then went into chemotherapy and radiotherapy.

“It didn’t work so well with this type of cancer. As a result from the radiotherapy the treatment burnt through my skin, leaving a hole that unravelled all of my skin exposing the metal plates, which had to come out."

Two more years of reconstruction surgery and recovery then followed.

“After several attempts of reconstruction, I had an artery moved from my arm to my neck to help with blood supply. The radial free flap operation was another hard step to overcome with even more scars on other parts of my body. Eventually the surgeons had to remove the eye, which led to prosthetics.”

Rebecca met Dr Rachael Jablonski, who asked her to take part in a research study called IMPRESSeD, a study part-funded by Leeds Hospitals Charity, that compared modern and conventional methods of producing prostheses. The new method used mobile facial scanning as opposed to manual moulding.

“I was more than pleased to still help with healthcare and research, as I couldn’t now go back to work. Nothing advances if no one takes part. Medicine is evolving and improving outcomes. I was happy to help make someone else’s journey a bit easier and better.”

“After having all that surgery and when the radiotherapy burnt through the skin, I was quite anxious about another procedure injuring my face, so when she explained about the scanner, I thought that would be brilliant. Having a mould on your face and pulled off is quite challenging, everything is still healing, so you’re worried it will tear your skin off .”

Rebecca says: “I’d always worked in medicine, but I found it really shocking how society doesn’t accept anyone with a facial difference or any disfigurement. Prosthetic legs and arms give function, it’s an aid, and can be seen as quite heroic, but disfigured faces? People recoil, especially for women - you want to look pretty and nice. I think a lot of people with a disfigurement might not even go out of the house. Just getting on a train to a hospital appointment could lead to panic attacks, so the option of a mobile scanner was quite reassuring for me. In time it might be possible to do it in the home and could open doors for a lot of people. Once a face is damaged, people take on a really different approach to you, so any research around disfigurement is a really good thing, to also make the public aware. You could have a car accident tomorrow – that could be you tomorrow.”

The scars have been psychological too.

“Your identity is rocked. It takes a lot to get used to your new face. Your confidence and self-esteem just get destroyed. People do need to be aware of it. We think we’ve moved a long way in modern society, but going through this, we really haven’t.”

As a mum and wife, it’s impacted heavily. “It’s not just my journey, my family have to go through it too. I worry my children don’t remember my face as it was, or if my husband finds me attractive. I’m not the person he married, or the mum I was before, and I worry they don’t see that person. I think that’s not the real Rebecca, she was left on the operating table in 2019, and I’ve created someone new. Anything that helps the whole journey – it’s a holistic thing – is valuable and the prosthetics is part of that journey.”

The research also gave her a link back to her career with the NHS.

“It was very sad leaving, but it gave me a stepping stone back to the hospital. Funding for research is vital. Without charity funding, research wouldn’t happen. There isn’t any money in the NHS to go towards these additional things. Advancement comes from research, so without this support, it wouldn’t happen. The charity has got to keep going.”

All photo credits: Ruby Lee
@ruby.angelaleephoto
rubyangelalee.myportfolio.com