The choir helping people reclaim the voices they lost to cancer | Arts and Culture


London, United Kingdom – It is a sunny day in early April, and a performance is under way in a gleaming concert hall in central London. A gentle crackling and clanking, echoing as if trapped in the hull of a ship, fills the room. These are the sounds of the swaying, creaks and groans of the trees that survived the Hiroshima and Nagasaki nuclear bombings.

The four singers on stage, all men in their 70s and 80s and dressed in black, start to riff along, adding tongue clicks and tut-tuts to the music of the trees, some pressing a finger to what looks like a large button on their throat. Projected onto a large screen behind them are ethereal images of the arboreal survivors.

The pace and volume increase alongside a collection of eclectic instruments: an electric guitar, a cello bow, an accordion, drums, the sound of B29 bomber engines and morse code, and the rattling of a Turkish coffee tin filled with rocks.

Then, the singers break into a refrain, in a loud, hoarse whisper that rings with a metallic reverberation: “Set your words free. Set your words free. Set your words free.”

It hits like a gentle electric current, unexpected and powerful. The singers onstage are cancer survivors who have had their larynx, or voice box, removed as part of life-saving surgery known as a laryngectomy, and use medical devices to recreate the voices they lost. They are singing to say that they do not plan to live in silence.

050: Philip Clemo's piano at his home studio in East Sussex, March 2023
The choir’s ‘From Silence into Song’ performance marries the singing of laryngectomy patients and the sounds of trees that survived the Hiroshima and Nagasaki bombings in Japan during World War II [Anna Pivovarchuk/Al Jazeera]

‘Huge impact’

Laryngeal cancer, which affects the larynx, is rare, with approximately 2,300 cases diagnosed in the United Kingdom each year, accounting for about 1 percent of all Britain’s cancer cases — a ratio that is consistent with global cancer diagnoses. About 500 to 600 laryngectomies are carried out in the country annually.

A laryngectomy removes part or all of the voice box, which contains the vocal cords that vibrate when the air we breathe passes down to our lungs to make sound. This surgery is primarily carried out on laryngeal cancer patients but also in some cases of thyroid cancer, motor neurone disease as well as severe neck injuries. It severs the connection from the lungs to the mouth, leaving a hole in the neck, known as a stoma, through which patients breathe.

To allow patients to speak, a voice prosthesis, comprised of a valve, is often inserted to connect the windpipe in the throat to the oesophagus, which carries food from the mouth to the stomach.

The prosthesis works by blocking the stoma button on the neck with a finger to force air to travel through this valve to produce a vibration in the oesophagus. The speech it produces is raspy but usually retains one’s accent. While the prosthesis is expensive and requires replacing at least twice a year, as well as extensive training with a speech therapist to master it, the device is considered the gold standard for articulation.

Another option is oesophageal speech where no valve is required and patients learn to swallow the air into the upper oesophagus to create a vibration, which gives a relatively short ability to voice words with a monotonous sound. Alternatively, the electrolarynx, an instrument which is held to the neck, produces an external vibration that results in a robotic sound, which is much harder for patients to adjust to mentally.

Perhaps because the disease and the treatment affect vital functions like breathing, eating and communication, studies have found that patients with head and neck cancers report the highest levels of anxiety compared with other cancer types, with almost 40 percent suffering from depression and social isolation. Many struggle with disfigurement or see significant changes in their sense of taste.

“It’s not just the voice that’s gone. It’s the smell, it’s the swallowing that’s affected,” says Thomas Moors, an ear, nose and throat (ENT) doctor at Lancashire Teaching Hospitals in the United Kingdom. “It’s a huge impact on their personalities.”

So much so, in fact, that many patients refer to themselves as “laryngectomees” as a show of solidarity and acceptance of the operation that has claimed what is a core part of their identity — their voice.

Thomas: Thomas Moors, during rehearsal at Westland Place cafe, London,
Thomas Moors during a rehearsal at Westland Place cafe in London in April [Anna Pivovarchuk/Al Jazeera]

Singing without a voice

It is pouring with rain on the spring morning when I meet Thomas in a small, cosy cafe in north London where the choir holds its pre-concert rehearsals. Thomas banters with the staff over the sound of the coffee machine. He is a welcome regular here, and the baristas are all coming to the next concert.

Although not an oncologist, Thomas is the founder and medical lead of Shout at Cancer, a charity specialising in music therapy for laryngectomy patients. The 39-year-old brims with energy and a ready mischievous laugh, offset by a pair of thick-framed glasses and a thoughtful demeanour. The choir is his brainchild.

So is the line of chocolates he created with one of Belgium’s top chocolatiers to cater to palettes affected by radiotherapy. Another collaboration, this time with Chiara Cola, a costume designer who worked on the film The Grand Budapest Hotel, involves a collection of silk prints fashioned to bring positive attention to the neck.

Thomas, who started singing in a choir as a child in his native Belgium, has long considered music to be a strong communication tool with the power to transcend boundaries, including language and culture.

Throughout medical school, he stayed involved with the choir. While on a track to specialise in psychiatry, he became interested in ENT, drawn to its vocal aspect as a singer.

Opera singer La Verne Williams
La Verne Williams, a professional opera singer and voice coach, employs music techniques through Shout at Cancer to help laryngectomy patients in their speech recovery journey [Anna Pivovarchuk/Al Jazeera]

Around 2010, while he was finishing his degree, he read a medical article detailing how a laryngectomy patient struggled to imbue his monotonous voice with emotion post-surgery. It made him think, “Hey, we can do something more for them”, Thomas recalls. He also saw it as an opportunity to merge his passions in music and medicine.

So he started thinking about implementing singing into speech recovery. “I kind of wanted to help this very unusual voice,” Thomas explains. While many might accept that a post-laryngectomy voice will be limited, he wanted to go further: “Can we not push the boundaries a bit more than just accept?”

Thomas also saw the artistic potential of exploring these almost never-heard voices. He thought: “This is an incredible expression, which is very powerful, which deserves a place on stage or in an installation or a museum.”

After finishing medical school, Thomas moved to the UK, where he freelanced as a doctor and joined a choir, performing across the country.

Being part of a troupe has taught Thomas the importance of team spirit and common goals. While post-laryngectomy speech therapy is highly technical, he sees connection and communication as essential during recovery. “It’s about working on the voice but, to do that, you need motivation and a lot of practice … And music is something that we all share,” he explains. “I knew that it was a way to motivate people.”

With the help of La Verne Williams, a professional opera singer and voice coach, and local speech therapists, Thomas trialled using singing exercises and breathing techniques, which help maximise lung capacity and control articulation, in speech recovery with a few patients at the Royal Preston Hospital, in Lancashire, in 2012. The following year, this developed into a workshop with five regular attendees at a Cambridge University hospital, with a performance choir formed in 2015 as a way to raise awareness of this small, scattered and oft-neglected community, and, just as importantly, to have fun.

Thomas sees the choir as offering a feeling of belonging for patients dealing with isolation as they find their way back into society and relationships.

“It’s not just working on the voices,” says Thomas, who is currently pursuing a PhD at the University of Ghent in Belgium with a focus on using art to improve life quality for laryngectomy patients. It is about “working on the confidence, on turning the page, writing the new chapter. And enjoying life. I think the thing that they all have in common [is that] they’re there to enjoy themselves and their time together.”

Picture of Sara, close-up on stage: still from "Can You Hear My Voice?" By Bill Brummel 2020
Sara Bowden-Evans performs on stage in 2020 [Courtesy of Bill Brummel]

‘My personality sort of disappeared’

It takes Sara Bowden-Evans and me a few attempts to get a video call connection where the audio is good enough for her voice to come across clearly.

One of the participants of the original workshop programme, and among the choir’s first members, the 58-year-old former quality assurance manager tells me her voice is usually much better; she speaks through a voice prosthesis, but her speech is more laboured and hoarse at the moment. She is currently at home in Cambridgeshire awaiting a valve procedure and is using a feeding tube.

In 2011, Sara was diagnosed with stage-three laryngeal cancer and faced with the incomprehensible prospect of having her voice box removed. When the doctor told her she was about to lose her voice, she remembers the news simply not sinking in. “Don’t be so ridiculous. You can’t remove my voice box — I won’t be able to talk,” she recalls saying.

“I think my first thought was about my daughter. How would I communicate if I can’t speak?” she says. Sara, who underwent a full laryngectomy in 2012, lives with her husband and 25-year-old daughter, who has Rett syndrome, a neurological disorder, and is non-verbal.

After the surgery, Sara underwent an intense regimen of chemotherapy and radiotherapy that left her neck severely burned, and she found herself losing confidence. “I didn’t have a voice, so my personality sort of disappeared,” she recalls.

“I was told that I’ll be all right because I’m a woman, I can just wear a scarf,” Sara says of the extent of the mental health care she received upon leaving the hospital.

No longer being able to laugh as she once did was one of the really difficult changes to accept. When I suggest that other survivors say their experiences have made them more patient, she responds with an emphatic “Never!” and her face forms into a hearty laugh that is contagious even without sound.

A massive setback came a few years later when a routine valve change procedure went terribly wrong and Sara ended up having extensive reconstructive surgery to rebuild her throat. She was left without a speech valve — and voiceless — for two years. “That was awful,” she says. “I got very, very depressed.”

There was frustration, anger, feeling sorry for herself, she admits. “The voice is so important to be able to have yourself heard … There would be no point in me going to some form of counselling if I can’t talk. Can’t talk about how you feel without a voice.”

When her throat had healed enough for surgeons to insert a new prosthesis, enabling her to speak again, it was like “somebody showed me the sun and light and everything was lifted off me”, she recalls.

236: From left to right: Thomas, Spyridon, Donald, Bruce Sherfield and Christian during rehearsal at Westland Place, London, March 2023 © Anna Pivovarchuk
The choir of laryngectomy patients started in 2015 as a way to raise awareness about this oft-neglected community as well as to have fun [Anna Pivovarchuk/Al Jazeera]

‘Outside the voice box’

Back when Sara was recovering from her laryngectomy, a speech therapist mentioned a doctor who was looking for patients to join a voice rehabilitation programme that used singing techniques.

Sara, who was never drawn to the idea of joining a regular cancer support group, jumped at the opportunity.

The exercises were designed to be playful; they worked on voice projection, imitated animal sounds and weightlifting noises in order to build breathing support. They did some acting. Engaging with different emotions, Thomas explains, helps to give colour to the voice, to explore and master it better.

The Shout at Cancer choir brings together people who, were it not for their laryngectomy, probably would have never met each other. But what members have in common, Thomas says, is the irrepressible desire to improve their voices. La Verne says she found everyone “very willing and surprisingly courageous in what they go through … You gotta have guts.”

Physically, even the mere act of breathing is more challenging than for those with a larynx. “What people don’t understand is that it takes them seven times the amount of energy to take one breath,” she explains.

So, when, one day, Thomas suggested that the initial group form a choir, everyone laughed.

The idea was definitely “outside the voice box”, concurs Thomas, who admits he has a slightly wild streak.

During rehearsal, when things are not exactly going to plan, he uses his verve to rally everyone with an encouraging, “There’s more magic in you than you think!”

“The choir is a different type of support group — support is still a big part of it,” Thomas insists.

“It wasn’t about, ‘Well, look at me, I’ve got cancer’,” explains Sara. “We never even mentioned that. It’s just about what we can do and not what we can’t.”

 Donal Cox, at his home in North London, March 2023
Donal Cox, the newest choir participant, at his home in north London [Anna Pivovarchuk/Al Jazeera]

‘Something I should mourn’

Over nearly a decade of the choir’s existence, the members have managed to forge an almost familial bond, with about 40 singers rotating throughout the years.

A day after his 77th birthday, its newest participant, the Irish-born actor Donal Cox, is walking towards his home in north London. The day is warm and bright, with an occasional dark cloud casting a shadow across the sky as well as Donal’s boisterous, humorous disposition when he talks about the most difficult parts of his cancer journey.

Donal has had a successful career in television, film, on the stage and as a voice-over artist, whose velvety baritone has been described as “liquid audio gold”. But in 2018, he damaged his vocal cords during the run of director Sam Mendes’s hit West End play The Ferryman. After noticing changes in his voice, Donal struggled through a voice-over recording and, as he left the studio, knew that he was in trouble.

Tests revealed a small tumour of unpredictable behaviour, and, after agreeing to be supervised by his doctor, Donal — a health activist who co-founded a charity focussed on holistic self-health approaches in 1976 and its teaching arm in 1993 — embarked on a strict health regimen and macrobiotic diet in an attempt to contain the growth.

He seemed to have succeeded in keeping the tumour under control, until, following a COVID-19 infection during Christmas 2021, it went from the size of a pea to that of a grape. By the following April, it was choking him.

This time, Donal underwent a full laryngectomy, followed by a three-month course of radiotherapy. “I was aware that it was essential to save my life,” he tells me after a long pause in his near-empty house as he gets ready for a move. He is wearing a cosy knit sweater with a scarf playfully draped around the neck, his electrolarynx resting on its black cord on his chest when he pauses the conversation.

Donal is still using the device, which produces a staccato metallic sound, as he learns how to work his voice prosthesis, so the emotion comes out in his face and gestures. “And I’m a bit of a stoic, so I was able to take that sentence of death for my voice and wait to see what I could turn it into.”

He saw his situation as a minor setback, especially when he compared his circumstances to what people were suffering in the ongoing war in Ukraine. But the day he left hospital, Donal says he was “overcome by an emotional thunderstorm, complete with tears — my body had decided it was time to mourn its loss”.

It is still difficult for him to talk about how radiotherapy destroyed his thyroid. We sit in silence for a few minutes as he finds the words to continue, gently tapping his fists on the dining room table as he considers the effect the laryngectomy has had on him. “It has been — still is — difficult to lose what was a core element of my life,” he finally says about losing his voice. “It felt like it was something I should mourn.”

Later on, as he plays the recordings of his voiceovers — immediately recognisable from television advertisements — I ask if he misses his old voice.

“Yes,” he nods quietly as tears rise in his eyes.

Spyridon Koskinas, in his front room in central London, March 2023
Spyridon Koskinas in his front room in central London in March 2023 [Anna Pivovarchuk/Al Jazeera]

‘We’re not going to settle for having no voice’

Last October, after attending a concert at London’s Bloomsbury Theatre that left him in tears, Donal made a beeline for Thomas, eager to get involved. “I think it was a response to the statement the choir was making: We’re not going to settle for having no voice. We’ve got voice,” he recalls.

Like Sara, Donal was not looking for a support group to talk about surviving cancer. As someone who values his creativity most in life, “this is so much more because the choir engages in creation of something that is beyond them — and that can really move people. And that’s beautiful. To me, that’s art.”

It was this creativity and an opportunity to collaborate that moved Spyridon Koskinas — who came to London from Greece in the early 1970s to study theatre design — to join the choir in 2015 after receiving an email advertisement. Until that point, the 72-year-old says he was “too superior”, not bothered by his disability and not in need of support following a full laryngectomy in 2002.

“Looking back, I thought I could do it on my own — until I was 50 years old. My head was too big with ideas; I was walking through a door sideways,” he chuckles. But it was the “intensity of Thomas” that reignited his creative streak. Thomas’ energy “brings joy, it pushes you to do things … I don’t need support — I need joy, I need to learn things,” Spyridon emphasises. “The choir is another part of my life where I can be with other people, work, communicate, exist with other laryngectomees.”

As we sit in the “red room” of his colourful Soho flat in central London, packed to the brim with books and fabrics as behoves the former wardrobe assistant of the English National Opera, Spyridon says he did not really feel anything when he was first delivered his diagnosis of cancer of the vocal cords in 1998.

Long before the rise of Google search, he did not know what to expect. “At the time, I only had the doctor’s word that I will be all right. I mean, they won’t say, ‘You will die.’ They have to say, ‘You will get better,’ and you have to believe them!” he recalls with a wry smile. His delicate face never quite loses its signature ironic expression, and he is dressed in various shades of blue — a colour scheme he only abandons for the mandatory black of stage performance.

By a lucky accident, the same day as his diagnosis, Spyridon found himself at a performance of the 19th-century German dramatist Georg Buchner’s play Woyzeck, where the entire cast had disabilities. The actor who played Woyzeck was blind and assisted onstage by a guide; Marie, the female lead, used an electric wheelchair. Spyridon recalls a moving moment when Marie picks up a piece of a broken mirror and, looking into it, contemplates out loud how beautiful she is; it brought tears to his eyes.

Such an unusual event, seeing people with disabilities perform, made him feel that he did not have a problem, really. “It was almost meant to be seen by me, to make me feel better in real life,” he reflects.

After a course of radiotherapy and several operations on his vocal cords, Spyridon finally lost his entire larynx in 2002, followed by another round of radiotherapy that completely destroyed the skin on his neck. No longer able to work, his morale was very low, and it was not until 2007 that he mastered oesophageal speech through yoga breathing, communicating mostly through writing. He now uses a voice prosthesis but still deftly jots down words upside down to clarify words you do not understand.

Then, while on a train to Devon in 2016, he felt his drink trickle down his neck where his skin has become paper-thin. This was the beginning of a hellish round of seven surgeries needed to reconstruct his throat.

Throughout 25 years of treatment, Spyridon never lost his sense of taste, so the first thing he did after leaving the hospital after nearly a year was take himself to a fancy restaurant by the river. “I said to the waiters, ‘Please, please, please, it has to be soft.’” They were very nice about it, he recalls, and the memory of his soup and crab pasta is clearly still completely delicious to him.

A picture of a choir and orchestra performing
Tanja Bage, at the centre of the three standing women, performs in May 2022 [Courtesy of Rey Trombetta]

Given six months to live

“It is a fantastic thing that’s brought people together, and we’re literally from all walks of life, different parts of the UK, different ages,” Tanja Bage tells me on a video call from her home in Leeds that she shares with her husband and two young children. Originally from Yorkshire, she has retained her rolling northern accent and has a warm, calm smile.

Tanja, who currently works in student education services at the University of Leeds, had studied performing arts before embarking on a satisfying career as a project manager at a supermarket chain. At 41, she is the youngest member of the choir.

Tanja was diagnosed with a rare type of laryngeal cancer just before the UK went into its first COVID-19 lockdown in the spring of 2020. Given six months to live, she opted for a total laryngectomy within a week of the diagnosis.

She went into survival mode, she says, swinging from being filled with absolute despair, terror and shock to still having to care for her four-year-old son and 20-month-old daughter. She had never come across anyone who has had a laryngectomy but decided not to make things worse by searching online for possible outcomes. She recalls thinking, “This is my neck. What can they do with something really terrible growing inside my neck?”

Having completed chemo and radiotherapy, and finally emerging from lockdown, what no one warned Tanja about was how vulnerable she was going to feel while being out in public with her young children. Everyday things, like crossing the road, became major obstacles. “You use your voice so much as a parent when you’re out with your kids just to keep them safe,” she explains. But she cannot speak to her kids when she is holding both of their hands, because she needs one hand to be free in order to work the prosthesis.

Tanja still does everything that she used to. She just feels more anxious about it. “I think I’ve just got a slightly heightened sense of people because I’ve got this different-sounding voice,” she says. “People stare sometimes. And I just try and pretend I’ve not noticed it … Sometimes I’ll throw them a look … Depends on the day, how tolerant I’m feeling.”

She finds the younger generation more tactful, treating her no differently than anyone else even if they briefly notice something unusual. It is the older people, she says, who tend not to have a filter and ask direct personal questions: “What happened to you? Oh my goodness, you sound terrible!”

An illustration of a big tree with lots of branches.
The artist and musician Philip Clemo used high-resolution, military-grade thermal and infrared cameras to capture images of trees that survived the atomic bombings in Japan [Philip Clemo/Shout at Cancer]

Turning a weakness into a ‘superpower’

Members of the choir have performed on stages big and small across the UK and beyond, appeared on radio and television, and have won a number of accolades, including the prestigious Paris-based Fedora digital prize as part of the Sound Voice Project — a performance installation — earlier this year, all of which has had a huge positive effect.

“It’s not singing the way that I used to do, but it’s allowed me this arena where I’m still able to express myself and, you know, it just feels wonderful,” Tanja, who did theatre work in her 20s, explains. Sara, who has written poems for the choir’s repertoire, says she “went from never going out the house without a scarf on to standing up in front of people and singing with no voice box — very odd, very surreal”. When I ask how much being on stage has helped her confidence, she gestures all the way up, somewhere off-screen.

“You cannot deny that this is a traumatic experience,” Thomas elaborates. But it is also “almost heroic, if you want, that someone without a voice goes on stage … changes the weakness into something strong, into a superpower almost”.

This sense of perseverance and togetherness is what binds the Shout at Cancer choir to Japan’s survivor trees. Like the laryngectomees, the trees, known as hibakujumoku, some of them hundreds of years old, make up a tiny but mighty community, with about 160 remaining in Hiroshima and 30 in Nagasaki.

After the atomic explosions during World War II raised temperatures to more than 7,000 degrees Celsius (12,632 degrees Fahrenheit) — incinerating everything within the blast radius and killing more than 70,000 people instantly in Hiroshima and 40,000 in Nagasaki — scientists predicted that nothing would grow in the area for 75 years. Yet just a few months later, the trees, reduced to charred skeletons in a devastated landscape, sprouted new leaves and, with them, optimism.

The choir’s “From Silence into Song” performance brings together the “music” made by these resilient trees and the voices of cancer survivors. As part of the project, East Sussex-based artist and musician Philip Clemo, 58, used high-resolution, military-grade thermal and infrared cameras to capture images of the trees to take viewers beyond the limits of ordinary perception. The sounds of the trees’ movements were recorded on the 75th anniversary of the bombings using an accelerometer and hydrophone which capture vibrations and sound imperceptible to human ear.

“We got the two sides of radiation, and they [the trees] were also silent, and now their voices have been heard. These choirs have come together into sort of songs of hope and resilience,” Philip explains.

This is a mood that the 29-year-old composer Christian Drew forges, together with Philip, in his first piece for the choir. “I was trying to create a kind of meditative place of acceptance rather than necessarily triumph,” he explains.

“There’s a darkness in the music, obviously, because there’s a darkness in the story, in the history, the reality of those trees … And it’s hard to get away from that,” he explains. “But obviously, with this project, survival is the takeaway.”

Phil & Christian: during rehearsal at Westland Place cafe, London, April 2023 © Anna Pivovarchuk
Philip and composer Drew are seen at a rehearsal for the choir’s ‘From Silence into Song’ performance [Anna Pivovarchuk/Al Jazeera]

‘You are the voice’

Back at the concert hall, the quartet, which includes Donal and Spyridon, breaks into a version of a crowd-pleaser, John Farnham’s hit “You’re the Voice”. There are tears in the audience.

“What we achieve by performing is paramount,” Spyridon says. It shows, he concludes, that “everything is possible … when you are positive”.

“There will obviously always be a sadness for what I’ve been through and what I’ve lost,” Tanja smiles. But for her and others in the group, the towering sentiment is that of overcoming and acceptance. “It’s about going out and finding those things that make you spark,” she reflects.

“I felt that fate had dealt me a really bad hand,” Donal says. “But the secret to playing with such a hand is to turn it into a lived experience of humility and gratitude.”

Sara says she believes the performance conveys the difficulties but also the steps that she and her fellow laryngectomees have taken to overcome as much as they can. She hopes that those who come to hear the choir see that “it doesn’t just end — there is life after laryngectomy”.

As Donal concludes in his poem that closes the show: “Life ain’t at all so bad.”

Source link

Leave a reply