Video transcript: I’m Still Me: Portraits and Stories of Cancer Rehabilitation with Facial Prostheses
Transcript for the video embedded on the I'm Still Me spotlight page.
[Rebecca, a Patient and Public Involvement Contributor, appears on the screen walking in a garden and a kitchen, then sitting at a table. She looks through a book of photographs showing a Himalayan trek where she fundraised for Changing Faces, a charity that supports people with visible differences.]
Jenny: I first met Rebecca on a zoom meeting.
First impressions were of somebody who was longing to tell their story.
[Jenny Mather, Fine Artist, appears on the screen sitting in a studio]
Had so many imaginative ideas about how this could be represented by an artist.
There was this willingness to have the whole of that vulnerability, that four years of medical procedure allowed to be shown.
[Rebecca appears on the screen. She is sitting on a sofa wearing an eye patch]
Rebecca: I was diagnosed in 2019, and unfortunately, what we thought was just a little lump, turned into quite a large tumour.
So that led on to surgeries that were long and hard, and then I started my chemotherapy and radiotherapy.
Yeah, leading up to the surgeries, was really frightening. I was really terrified of having a scalpel on my face.
Yeah, that was a really difficult time waiting for that surgery to happen.
[Examples of Rebecca’s artwork and sketches are shown on the screen]
I was referred to the prosthetic department and met Paul, who is lovely.
[Paul Bartlett, Chief Maxillofacial Prosthetist and Rachael Jablonski, NIHR Academic Clinical Lecturer and Speciality Registrar in Restorative Dentistry are shown. Paul and Rachael are discussing facial prosthesis work in the maxillofacial laboratory]
[Rebecca appears on the screen]
I met Rachael, because she was sitting in with Paul and we were chatting in the, in the appointment, and she was telling me all about her PhD.
I just thought how amazing it was, and with my, you know, my background of nursing, I've always been involved in research and patient journey and making things better and, you know, just seemed really positive thing to be involved in.
[Rachael appears on the screen, chatting to Rebecca. The computer shows Rebecca’s facial scan and a digital design for Rebecca’s facial prosthesis]
Rachael: So one of the key areas that we work in as restorative dentists is in the rehabilitation of patients with head and neck cancer.
And as a Specialty Registrar we do a lot of work with these patients and you can start to learn about the challenges they face, and the key areas that we need to improve in the rehabilitation processes.
So there’s three key things that patients wanted us to, to change about the process.
So firstly they wanted to get rid of that uncomfortable facial impression.
Secondly, they wanted to try and improve the, the design outputs that were produced, and improve the aesthetic outcomes.
And then thirdly, to try and improve the efficiency of rehabilitation so that they could get the prosthetic much quicker during that process.
[Sabah Zaulifqar, Chief Maxillofacial Prosthetist, appears on the screen working on a nasal facial prosthesis]
Facial prostheses are made by maxillofacial prosthetists who spend up to about six appointments making a prosthesis.
[Paul appears on the screen]
I started in 1979, so that's 45 years, and today I retire. When I first see the patient obviously I've got to take an impression.
[Paul holds a facial impression to the camera]
So this is an example of, of a facial impression, so I carve it in wax then I'll do a colour match.
[Paul shows examples of the key steps involved in making a facial prosthesis]
I've got to flask it, syringe the silicones into place and then put in the background silicone afterwards.
Close it all up, put it under pressure, put it in the oven for an hour and a half and then take it out and we're virtually ready apart from some extrinsic colouring that I do later.
I've always done it by taking impressions and it was reasonably easy.
But, on some of them where there are big defects, it's quite scary.
[Rebecca appears on the screen. Rebecca is seated in the Dental Translational and Clinical Research Unit at the Leeds School of Dentistry]
Rebecca: Having that substance poured on my face and then setting hard to pull it off was quite a tug which made me quite frightened it might pull more skin off.
[Paul is shown in the Maxillofacial Laboratory at the Leeds Dental Institute adding colours to a facial prosthesis]
Paul: I would say in the lab, yeah, at least 15 hours, at least two full days work. I would think. But it can be more than that.
You know, you can go and not be right, and then you have to come back, redo.
[Rachael appears on the screen in the Digital Dentistry Laboratory at the Leeds School of Dentistry]
Rachael: In a computer aided manufacturing workflow, there will be three key steps.
[Rachael is shown conducting a facial scan on Rebecca. The facial scan and digital design for the facial prosthesis are shown on the computer screen. The 3D printed facial prosthesis replicas are displayed].
So firstly, some form of facial scanning to acquire all the data that we need to make the facial prosthesis.
Secondly, some sort of computer aided design to help potentially make more predictable outcomes.
And then thirdly some form of 3D printing technology to try and speed up the manufacture as well.
[Rebecca appears on the screen]
[Rachael is shown conducting a digital facial scan on Rebecca]
Rebecca: The digital scanner is it's just so easy. You just sit in the chair, and it's just, a scan around your face, you know no one touches your face, it builds up on the screen, the image gets saved on the computer, so it's kind of less appointments.
[Rebecca’s 3D printed facial model and prosthesis replica are held up to the camera]
[Paul appears on the screen]
Paul: The 3D technology is absolutely brilliant, and it's it really does save me time.
It helps me position the eyes and everything. But you still need me.
You still need me to just give it the finer detail and to finish it off.
[The computer screen shows the 3D morphable model technology that is used to design the facial prosthesis in a semi-automated way]
Rachael: It could potentially be cost effective to our NHS if we introduced digital technologies into this area.
But the data and the evidence that's out there is really early, so we need to do a lot more research to better understand it.
[Paul is shown fitting Rebecca’s facial prosthesis for her]
Rebecca: The prosthetic for me, that's a journey. I think that the facial prosthetics are so realistic they do give you confidence, they give, they do give your face back.
For me, it is just it's a confidence thing. And that's what I need to just grow into.
You know, that's part of acceptance, of the whole journey. You know, I look in the mirror on a morning and I have to clean.
[Rebecca looks in a mirror wearing her prosthesis]
And then once the prosthetics on or, or my patch, whichever, you know, choose to wear, then I'm ready for the day.
But it's a psychological, ongoing thing that's never forgotten.
[A painting of Rebecca is shown]
[Tim, Patient and Public Involvement Contributor, appears on the screen. He is wearing his prosthesis and is shown driving a tractor on a farm]
Well after the surgery, I knew things were going to be difficult. It closed a door, but several more open thereafter.
And life goes on and I'm learning all the time.
[Tim and his partner, Janet, look at the painting of them from the I’m Still Me project]
My knowledge of farming back then was minuscule, and I picked a hell of a lot up in the in the time since then.
[Tim holds up a painting of himself from the I’m Still Me project]
[Paul holds up the painting of him from the I’m Still Me project]
[Rebecca is shown looking at paintings of her in a studio]
[Rachael appears on the screen]
Rachael: I'm Still Me is an arts and science, collaborative public engagement project that's trying to share some of the research that we've been doing at the University of Leeds over the past few years, and also share people's experiences who live with facial prosthetics.
[Rachael and Sarah Morley, Fine Artist, sit on a sofa in an artist’s studio]
For me, making a facial prosthesis really brings together the arts and science. In the UK, maxillofacial prosthetists typically come from a science and technology background, but actually there’s a huge artistic component from what they do too.
So we knew whenever we brought this work together that we wanted to share both the arts and the science.
[Sarah, Jenny and Alison are shown painting in their studios]
Sarah: The idea then was coming to me that, could I get a group of artists to, to paint the different patients?
And the artists would have some different styles, and possibly the patients might choose different artists to paint them depending on whichever style they liked. That was part of the idea.
[Jenny and Rebecca hug then discuss Jenny’s paintings of Rebecca]
[Sarah sits on a sofa surrounded by her paintings for the I’m Still Me project]
I think the artists were all very honoured to be doing this. And, were also very aware of the sensitivity of what they were painting and the delicacy of painting people who had their faces altered in these ways.
[Alison Murdoch, Artist, appears on the screen surrounded by paintings from the I’m Still Me project]
Alison: As soon as I heard about it, I just knew I really wanted to do it. I just thought oh, that's me. And I was not nervous, but didn't quite know what to expect in every aspect.
When I met him [Robin] he hadn't had any prosthetic treatment, and he was quite, it was a bit of a low point for him. He came all wrapped up and everything, and it made me realise it was a big deal for him to come out and meet someone.
[Robin, Patient and Public Involvement Contributor, appears on the screen wearing his prosthesis and looking at Alison’s paintings of him]
Robin: You put your trust in the artist to bring me out of them, and I think you've done that.
Alison: Well, you were very generous with your time and your personality really comes across as soon as you meet you so.
[Alison and Robin discuss one of the paintings of Robin]
Robin: I'm having this out there, you know, so people can look at it.
And thankfully, you've been brilliant enough to actually capture the anger and the darkness.
[Jenny and Rebecca discuss one of the paintings of Rebecca]
Rebecca: The emotion, the emotion that you've captured in there is just immense. It's exactly what I wanted.
I thought you can’t, how do you paint an emotional event? You know, but it's, it's there. I can almost feel it happening.
[Rebecca is shown holding a fluffy cat, then sitting on a sofa wearing an eye patch]
I think for me, the texture of the, of the prosthetic, it's still quite a hard silicone plastic, that's, you know, not very supple.
So facial expressions, I feel I miss the facial expressions, but that's not, you know, not to be said that that won't happen in the future.
You know, with further research, you know, anything's possible.
Rachael: So in the future, I think there's a lot more work we could do in this area.
[Rachael appears on the screen]
I'd like to work again with patients and the public to really keep them at the centre of everything that we do, and identify the next key challenges to tackle.
I'm sure there's probably been even more technological developments out there in the past few years that we could potentially introduce into our work.
I think the lasting impact that we would like to have achieved is to have built this culture of collaboration and engagement and to have connected all these different professionals, patients, artists together to really amplify the voices of those who need it most.
[The words “I’m Still Me, portraits and stories of cancer rehabilitation with facial prostheses” appear on the screen, followed by a list of funding acknowledgements and the names of people who has supported the I’m Still Me project.]