ASCO Education
ASCO Education
Jul 19, 2022
Oncology, Etc. - Finding Your Voice: A Tale of Healing and Rediscovery
Play • 49 min

Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host this live ASCO podcast with award-winning documentary producer/director Bill Brummel. After undergoing a laryngectomy in 2016, Mr. Brummel produced and directed a documentary film titled “Can You Hear My Voice?” that chronicles the one-of-a-kind Shout at Cancer choir, whose members have all had their voice boxes removed, as they prepare for the most ambitious concert. This podcast features audio clips from the film. Mr. Brummel, who is joined by his surgeon, Dr. Uttam Sinha, of Keck Medicine of USC, reflects on his own cancer experience and the psychosocial impact of losing one’s natural voice.

For more information about the film or hosting a screening, visit www.canyouhearmyvoice.com or email info@bbprods.com.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

 

TRANSCRIPT

Dr. Dave Johnson: So we're back here with another episode of our world-famous Oncology, Etc. podcast with two very distinguished guests, Pat. 

Dr. Pat Loehrer: Well, we're thrilled to be here to record this episode in front of an audience. Usually it's just Dave and I, and supposed to be a live audience. Although after three-and-a-half days of ASCO, I'm not sure if anybody's still alive. We have two very distinguished guests today. Mr. Bill Brummel is the award-winning documentary producer and director. He and his films have been recognized with the Peabody Award, two International Documentary Association Awards, five national Emmy nominations, and have been named for the Oscar shortlist. Many of Dr. Brummel’s films have focused on civil rights and human rights issues. 

After having his voice box removed in 2016 due to complications from radiation therapy, which he received for his head and neck cancer, Bill produced and directed Can You Hear My Voice? This film, which has not yet been publicly released, was shown on Saturday afternoon here, chronicles London's Shout at Cancer Choir, whose singers are living without voice boxes. It's amazing. The ASCO Annual Meeting attendees saw this on Saturday, and today what we're going to do is hear and see some of the clips from the movie and hear from the director himself. 

Dr. Dave Johnson: We're also joined by Bill's physician Dr. Uttam Sinha who encouraged Bill to create this documentary about the psychosocial aspects of living without a voice box. Dr. Sinha is an Associate Professor of Otolaryngology at the University of Southern California where he tells us he spent the bulk of his life. He's also the Watt Family Endowed Chair for Head and Neck Cancer at his institution. Dr. Sinha’s holistic medical approach was really truly critical, Bill tells us, to his both physical and emotional recovery following laryngectomy. So Bill, Dr.Uttam, welcome to Oncology, Etc

Mr. Bill Brummel: Thank you very much. But one thing your audience should know and you should know is that after having a laryngectomy, speaking with a voice prosthesis, we lose the ability to laugh out loud. So, Pat and Dave, if you happen to tell a joke or say anything funny, know that I'm laughing inside. 

Dr. Pat Loehrer: I think Dave and I think that most of the people that listen to our podcasts probably have had laryngectomies because we hear no laughter at all from anything we say. So, Bill, we’re really here today to talk about your documentary. And we’re going to show a few clips. But before we show the first clip, can you set this up for us? 

Mr. Bill Brummel: This clip sets up the choir and the premise of the film. We follow the choir as they prepare for the most ambitious concert they have ever attempted. So it’s really just setting up the premise. 

Dr. Pat Loehrer: Now this is extraordinary. So if you could run the first clip for us. Appreciate it. 

[Clip starts playing] 

Speaker 1: I'll remember quite well, when I first suggested let's form a choir. They responded with laughter and surprise and disbelief. 

Speaker 2: It just seemed ridiculous that you would expect a group of  people with no voice boxes to stand up and sing in a choir. It didn't seem realistic. But Thomas had confidence that we could do some things. We went along with his mad scheme. And then one day was sort of now, what about a concert? What? 

[Jazz playing] 

Speaker 3: Well, the people in the choir are just normal people. 

Speaker 4: I really admire the courage that it's kind of taken to come through all of their treatment. 

Speaker 5: After all the stuff they'd gone through, they're able to turn that into something creative and artistic. That's really, really impressive. 

Speaker 2: The concept is something new. It's almost a defiance, which is what people need, is to be defiant. Was that a F sharp I sang or what was it? You know, it doesn't matter. 

Speaker 6: Most of them never read poetry before. Most of them never sang before. Most of them never were on stage before. And they were going to put on a show. And they're going to add this other two or three layers of emotional vulnerability. 

Speaker 1: All right. Everyone, just like we prepared. We know what we're doing and we're going to enjoy ourselves. Yeah? 

Speaker 6: We're doing a concert. People have paid money to come and see us. The adrenaline rush is incredible. I can't describe it really. I never thought I would do something like this. 

[Applause] 

[Clip ends] 

Dr. Dave Johnson: Tell us a little bit about how this film came about. Obviously, you had a personal connection to it. But give us a little bit of background information, if you will. 

Mr. Bill Brummel: Well, about nine months after my laryngectomy and after getting through some of the emotional and psychological problems that a lot of people who've had the surgery experience, and we'll go into that later on, I went to an appointment with Dr. Sinha, a regular scheduled appointment. And out of the blue, he suggested that I make a documentary about the psychosocial aspects of recovering from and living with a laryngectomy. Now my first thought was stick to medicine, doc. I'm the professional here. Just kidding. It was an excellent idea. But why on Earth did you suggest that? 

Dr. Uttam Sinha: We never get to see the psychosocial aspect or the challenges or the suffering they go through, and most importantly, the head and neck cancer is not so well known in the society, unfortunately. So all my life, in my 25 years of practice, I always tried to promote head and neck cancer awareness in our society. One day I told my friends, 'I need to raise money for research for head and neck cancer.' So they asked me, 'What is head and neck cancer?' I said, 'This is head, this is neck – cancer of this area is called head and neck cancer. 

So anyway, so that was one of the driving forces then to create awareness within the society and also how the head and neck cancer patient live after going through the treatment and surviving the cancer. 

Mr. Bill Brummel: When Dr. Sinha suggested it, it was an excellent topic. But I knew I needed a story to illustrate it. So right after the appointment, I went home, fired up Google. And very quickly, I discovered the Shout at Cancer choir on a website. Shout at Cancer is a London-based nonprofit charity, that among other things, uses some breathing techniques and singing techniques to improve the vocal outcomes for laryngectomy. Now, I knew that if I could get all the pieces in line, that this would be a great way to produce the film that I wanted to produce, that of a group of people who’ve undergone a life-altering surgery, and all the hardships and drama that goes with that, but still leading a meaningful and productive lives in a very entertaining fashion. 

Dr. Dave Johnson: There's some really extraordinary people in this film from the Shout at Cancer choir. How did you happen to select the specific individuals within that choir group? 

Mr. Bill Brummel: Well, I took two production trips to the UK after we found funding and after I got the choir on board. I took two pre-production trips to the UK and went to every choir member's home individually and met with them and their spouses. Now, they all have compelling stories. But for reasons of time, I couldn't have personal profiles on all of them. But I eventually settled on five. And I knew even then, that only four would probably be included in the film. I say that they have compelling stories. I think I could have done a Netflix limited series 10 episodes, one on each choir member. 

Dr. Dave Johnson: I think you should consider doing that. 

Mr. Bill Brummel: That might be too late to do that. But they're really excellent and articulate and all have slightly different stories. 

Dr. Pat Loehrer: You told their stories. And again, for those who haven't listened to the documentary, I really encourage you to do this when this comes out. But just I have a question. You've done so many different documentaries about so many important things over the years. Do you think you would have done this documentary had you not had a laryngectomy? 

Mr. Bill Brummel: Definitely not. A laryngectomy was not even on my radar. I don't think I knew what it was before I was faced with having it. So no, I definitely wouldn't have done that. 

Dr. Pat Loehrer: It really is a terrific service that you've done. You've helped so many people. Dr. Sinha, there may be a listener or two that listens to the podcast that is not a physician. Can you explain just in lay terms what a laryngectomy is and what it means and the process behind it? 

Dr. Uttam Sinha: So, as you know, that larynx is an organ that produces sound. It doesn't produce speech. This a misconception within in our society that the patient undergoing laryngectomy they cannot talk. A laryngectomy patient, they talk well, but the patient when I remove a portion of the tongue for a partial glossectomy, then they have a hard time to speak because speech is produced within the oral cavity. 

So a laryngectomy is basically, the removal of the voice box removing the trachea from the esophagus so that they can breathe well and also they don’t aspirate because that's a big challenge. Aspiration pneumonia, is a consequence to fibrosis induced by radiation. 

So early on in our practice at Keck School of Medicine, 25 years ago, we started this program where we decided to do neuromuscular electrical stimulation swallowing therapy to reduce the fibrosis so that there'll be less chance of aspiration, and aspiration-related pneumonia. So the laryngectomy we perform, especially in Bill’s case, he's a cancer survivor, but he had a hard time breathing and talking and also mild aspiration. So that's why we had to do a laryngectomy where we remove the voice box, and that improved his overall quality of life. 

Mr. Bill Brummel: I remember as my breathing difficulties increased, Dr. Sinha advised me that a laryngectomy was in my future. And like I said, I didn't even know what it was. But he advised me that my quality of life would improve in the long term. But I was in denial. So I stalled. I didn't have it when he first advised that I have it. 

Dr. Pat Loehrer: Here at ASCO, we have 30,000 to 40,000 people there, many of them are cancer survivors, and I'm thinking about when we think about most cancer survivors, Dave is one of them, and we'll talk about that in a little bit, most of them fit in with the crowd. The cancer survivors with laryngectomies something that doesn't. This is something that not only have you survived it, but you have the wounds to show for this. Can you tell us a little bit about that and briefly the thought processes of 'Listen, someone's going to take out my voice box. I'm a director. I need to have this.' I'm sure you stalled making this decision. And what was the final tipping point for you to have this done? 

Mr. Bill Brummel: Well, as my condition got worse and worse, it was really hard to speak. And it was really hard to breathe. At times, my wife could hear my labored breathing from the other rooms of the house. I couldn't even climb maybe three or four stairs without getting winded. And then I remember the date of March 10th of 2016. I went to another appointment with Dr. Sinha. And I don't think I got two sentences out before he interrupted me and said rather firmly and with a good sense of urgency, 'Bill, we have to do the surgery now.' 

He was obviously concerned that I would have a breathing emergency at home or in the market, paramedics will be called in, they do an emergency trach on me. I knew that Dr. Sinha would do a much better job than a paramedic. But I remember sitting in that exam room with Dr. Sinha and my wife, and the Dr. Sinha was basically telling me I was risking my life if I didn't have the surgery. My wife was worried sick. And although I was frustrated, I couldn't come up with any more excuses. So I said, 'Yes, let's do the surgery.' 

Dr. Sinha wanted to admit me right then and there, and not send me home, but the OR was booked on the next day. So Dr. Sinha, bless his heart, called an OR to come in to do the surgery on a Saturday. I was the only one in the recovery room or the pre-op room. And I remember that when we arrived at the hospital, I think we have a clip of our kids, my wife, and I, we were sitting in the admissions waiting room. And my wife got out her cell phone and asked if she could record my natural voice, although wheezy and weak, one last time. And this is the 35 seconds. 

[Recording starts playing] 

Frances Fitzgerald: Okay. What’s happening today? 

Mr. Bill Brummel: It's 5:30 in the morning, March 12th, 2016. And today, I'm giving away my vocal cords. And walk out of here, hopefully within a few days, with voice prosthesis and a new voice. Although I won't be able to test the voice for several weeks, I'll have to be silent, which will please many people around me. So that is what is happening. Last time you'll hear this voice. So to all of you, I love you. Thank you for all your support and prayers. Here we go. 

[Recording stopped] 

Dr. Dave Johnson: So I'm sure that that probably brings back some very emotional memories to you, Bill, and as Pat asked, post-operatively, what did you think about your future? What was your psychological state at that time? And how did you feel physically? 

Mr. Bill Brummel: Well, physical recovery from the surgery was hard. And I vacillate by saying it was hard and it's awful, but it was physical recovery. But worse yet, I was saddled with insecurity and fear and doubt. People who have had the surgery can often lose confidence. They can sometimes retreat from society and withdraw into a world where we don't have to be seen in public. But when we do that, lonesomeness and depression are sure to follow. There were times I found it easier to isolate myself rather than navigate. I didn't want to go out. I didn't want people to see me. And I got depressed. It was just natural. Losing your natural voice is really traumatic. From the time we learn to speak, much of how we perceive ourselves is wrapped up in the unique tone of our voices. It expresses laughter and happiness. And with that gone, many patients really struggle with anxiety, self-doubt, and doubting their self-identity. 

Dr. Dave Johnson: So, Dr. Sinha, is that a common reaction amongst your patients post-surgery? 

Dr. Uttam Sinha: Yes, it's fairly common. That's why I started 16 years ago with my colleagues a survivorship program to support the psychosocial aspect of these patients. Whenever we can, we mentor the newly diagnosed patient with the established patient. Bill has done many, many mentoring for those patients who underwent laryngectomy after his laryngectomy. And I'm so grateful that our patients are so supportive to each other for the whole organization. So yes, this is very common and that's why we always talk about not just the physical but psychosocial aspects of our health. And also in our practice, we always try to promote not only the health of the patient but also health of the caregivers and the family to improve health. I think it depends on all four dimensions of health, which is the WHO definition of health, the best state of physical, mental, spiritual wellbeing, and not a mere absence of a disease process. 

Dr. Dave Johnson: You mentioned the family. We want to get back to that in a moment. I think we have a clip from Sara. She was one of the patients that was featured in his film, and there’s a wonderful clip. I want to get to that in just a moment. But I just have an important question to ask Dr. Sinha. Was Bill a good patient? 

Mr. Bill Brummel: Was I a good patient? 

Dr. Uttam Sinha: I have to think about that. 

Dr. Dave Johnson: That’s what I thought. We'll watch this clip while you think about that. 

[Video clip playing] 

Sara Bowden-Evans: I have two vivid memories of those moments just before going down to theater and having the realization that when I came back out, I wasn't going to be the same person. I would never be me again because they would taken my personality which would mean my voice. And then when I came around, I couldn’t call for help. And that was so frightening, really scary. 

That was pretty awful actually coming to terms with all of this. I lost all my confidence and didn't want to speak. You can sound very angry all the time, even when you're not. I didn't want anybody else to really see me or hear me and all the other things to contend with as well, not being able to swallow properly and losing all my taste with radiotherapy, suddenly gone. I think the loss of laughter is one of the most difficult things for me. So it's just one thing after another after another and it just made me angry all the time. 

Speaker 7: Emotional changes were quite dramatic. She was very, very moody at times. She just felt that everybody was staring at her. And it just changed her personality. 

Speaker 8: We know from evidence that people who've had a laryngectomy can be much more likely to experience anxiety, depression, social withdrawal that can have a really important impact on relationships. 

Speaker 7: The emotional side is the hardest part of caregiving. That's part of a relationship. You take the bad times with the good times. 

Sara Bowden-Evans: I know that I wasn't a very good patient because I know that there were times when I was really horrible to him because I was dealing with my situation, and I took it out on him. But he’s still here. He stayed with me regardless. 

[Video clip stopped] 

Dr. Pat Loehrer: As you watch this film, you realize what a remarkable human being Sara is. She's a writer, she's a poet, and even the title of your documentary comes from her. 

Mr. Bill Brummel: I stole it from her. 

Dr. Pat Loehrer: Yeah, it's extraordinary. 

Mr. Bill Brummel: It's one of the poems she wrote and we use in the film. 

Dr. Pat Loehrer: The question I'd asked Dr. Sinha, if you don't mind just following up on this, when a woman is diagnosed with breast cancer, as my wife was, there's this wonderful support community, and they even have a color of their own. And the women get together and they have runs and they do all the stuff. Similarly for several other cancers. I think with head and neck cancer, the inclination, I think, as Bill mentioned earlier, is to be isolated and almost withdraw yourself. This was a unique group of individuals that got together for this project. We’ll hear about it more. But how common is it for laryngectomy patients to actually bind together? Or do they typically fight this battle alone? 

Dr. Uttam Sinha: So they feel very isolated, no question, and depressed. That's why it's very important to have that kind of support system. Head and neck cancer is very unique. Most other cancers, squamous cell carcinoma, the same cancer when it happens in the lung, and you remove half of the lung, nobody would know and person's quality of life would not be compromised. 

On the other hand, if same squamous cell carcinoma happens in the head and neck area, it compromises quality of life because all the function that makes us human beings - speech, swallowing, hearing, balance, smell, taste, all those things happen in this area. So when this area is damaged, whether by cancer itself or treatment related, that causes tremendous depression as their functional status goes down, and also they get isolated because they cannot go to the society freely, like to go to a restaurant and feeding himself with a G-tube with the rest of their friends or family are eating by their mouth. So that's quite depressing. In fact, I have patients, couple of patients who committed suicide because they were G-tube dependent. So head and neck cancer in that regard is very unique compared to other cancers. 

Mr. Bill Brummel: I would say, to just add one point in regards to Sara and other women who have a laryngectomy, obviously, we don't have a lot of breakage in our voice. Our voices are very low. And it's really the same for women as it is for men. But men’s typical voices are lower and women's are not. So that is a factor in their emotional recovery. They really don't sound how they used to when speaking with a voice prothesis or through an electrolarynx. So it's really difficult for women. 

Dr. Pat Loehrer: As humans, we think in the past and the future, we go back and forth, but you've had a life as a very successful film producer, director. And I think in many ways, this is probably one of the most unforgiving professions for any kind of disability, whether it's even putting on some weight or having an accident. But tell me a little bit about your life before laryngectomy and after laryngectomy. How has this changed your life as a professional? What has happened? 

Mr. Bill Brummel: Well before even my laryngectomy, before cancer, I was originally diagnosed in 1997 with tonsil cancer. It was treated by neck dissection, not by Dr. Sinha, and seven weeks of radiation antidotes over wide fields. I had been in television production for about 10 years prior to that. And I was doing mostly silly reality shows, or music video shows, stuff that didn't have really any substance to it. I had started my own production company about a year before, but after my cancer diagnosis, I really thought to myself that if, God forbid, the cancer comes back and my life is cut short, do I want to spend my days, my effort in terms of my work life producing shows with no substance. And I said, 'No, I don't want to do that. I want to produce shows that feed the soul as much as the wallet.' Unfortunately, 20 years after that, my soul got a lot better than my wallet. But I wouldn't change it for the world. But having cancer, having that diagnosis definitely changed the trajectory of my career. I wanted to have a legacy and something that my children would be proud of. 

Dr. Pat Loehrer: Just a follow-up question, I had a very good friend of mine who had a glioblastoma. After his diagnosis, he said he learned things about friends. He said, there were three kinds of friends. There were these friends who were the loyal friends who he'd always had, who really were with him. There were the people that he had thought were friends that just disappeared. And then there was a third group of people who we never ever dreamed would be friends, but they came out of nowhere to become new friends for him. So reflect a little bit on that. Does that resonate at all with you? 

Mr. Bill Brummel: It definitely resonates. After my laryngectomy, and I went through this period of emotional difficulty, I was still one of the fortunate ones. I was blessed to have a supportive network that included family and friends, others, colleagues aided my recovery. And obviously, the medical team at Keck Medicine of USC, a lot of them became my friends and are still my friends. So they came out of the woodwork. My laryngectomy buddies are close friends. We have a supportive group that meets two times a month. They become real good friends. I can't imagine my life without them. But Dr. Sinha talked about his supportive care. It was really important to me. He's always preached about a hollistic response approach to health that includes traditional medicine, exercise, nutrition, physical therapy, mindfulness, and a bunch of other things, occupational therapy, speech therapy. To varying degrees, I embraced each of those modalities. But back to your original question, certainly, some friends fell off the map. I made new ones, the family and friends that I had, the relationships became really strong and a really important and critical part of my life. 

Dr. Dave Johnson: That certainly resonates with my own experience as a cancer survivor as well. And you've mentioned your family more than a few times. I’m confident that they were a very important part of that support system. Could you speak to that a bit? 

Mr. Bill Brummel: Well, they understood what I was going through. And if they didn't understand, they asked questions. They didn't ignore the elephant in the room. My wife, as a caregiver, I really don't know what I would have done without her after my laryngectomy. She was changing all my dressings, cleaning out the stoma, stuff that I assume if I was alone, I could have done it, but I didn't want to. I didn't want any part of it. So she got me the physical recovery. And then she started getting me the emotional recovery. 

When I was feeling sorry for myself and sitting at home, she very politely kicked me out of the house. And she said, 'If you want a cup of coffee, you get it.' I would drive down to Starbucks. It took me three months to speak because the swelling wasn't going down. But she kicked me out of the house and said 'Go to Starbucks' And I would just write on my phone my order and show it to them. And that seems like a very easy thing to do, but it was a big step for me. 

But it also started me thinking, well, maybe people are going to stare. But it seems like most people are understanding. And that's been my experience. I get stared at a lot all the time. And when I speak, people turn their heads. But most people are really understanding and want to help. In fact, they might even take the extra step for me that they wouldn't for some other person. 

Dr. Uttam Sinha: We established a caregiver support group, Coffee with Caregivers, and Frances is the president. 

Mr. Bill Brummel: Frances, my wife, yes, she facilitates the weekly meetings. 

Dr. Dave Johnson: Well, there's so many rich aspects of your film. For those who have not seen it, you really do need to see this film. But there are a couple of areas that really resonated with me and reflected my experience, one of which we have a clip from this family. But I have a daughter, who was 10 at the time that I was diagnosed with lymphoma. And my wife and I did our best to shield her from the possibility that I might not survive that. In retrospect, I'm not sure we handled it quite the right way. But you have a clip from Pug and his wife, Kat, and their daughter, Lily. And I think it so reflects my own personal experience with my daughter and her reaction to me. So maybe you might want to just comment on that before we show the clip. 

Mr. Bill Brummel: In the pre-interviews I did and selected a choir member for shooting, I developed an outline of what I thought the segment with life would look like. And you know when you do documentaries, you had to be able to change it at a moment's notice. So I had three interviews with Pug and Kat and came up with a sweet story that involves just them. When we recorded the interview, I was just blown away by Pug’s daughter, 12-year-old Lily, and completely changed the focus of Pug’s presence in the film to illustrate the impact that a cancer diagnosis and a laryngectomy has on families. 

[Video Clip Playing] 

Interviewer: When your dad got the laryngectomy, how did you deal with it? 

Lily: I think I was probably more upset than dad seemed because I thought he was really going to die. 

Pug Halliday: It's hard because we were always honest with Lily. But no matter how many times we said it was going to be all right, you know, you were worried, weren't you? 

Kat: Basically after the operation, Pug had a lot of black, like Frankenstein stitching and drains and tubes. And Lily hadn't really seen that sort of thing before. Because she was younge,. I didn't want her to be frightened, so I waited and I spoke to Pug. 'When shall I bring her up?' And he said, 'Why don't you take a photo?' 

Pug Halliday: The drain’s around, so that would be five, seven days after my operation. 

Mr. Bill Brummel: And Lily, so that didn't scare you, the photo? 

Lily: No, because he was—well, I think that yeah, it scared me a little bit, but in that photo, he’s like really happy, so- 

Pug Halliday: By the time when we asked Lily, she said, 'You were smiling and had both thumbs up.' So, you were reassured a bit by that, weren’t you? 

Lily: Yeah. 

Mr. Bill Brummel: Lily, what did you do to try and make your dad feel better during his recovery? 

Lily: I made tea for him. 

Pug Halliday: Yeah, you came and you read me stories instead the other way around. 

Lily: I read you stories, and I made him lots of things as well. Like, I don't know, like little books where he was really amazing. 

To you, my favorite person in the world. 

You are the best. 

You're my inspiration. 

I love your facial hair and your mustache presentation. 

When you were ill, feeling depressed, 

I knew you’d make it because you're the best. 

You're kind. 

You're brave. 

You're funny, too. 

I'm so happy I have you. 

I can't believe that you're my dad. 

It turns out that you’re not so bad. 

 

[Giggles] 

Pug Halliday: I keep these by my bed. And when she turns into a teenager and hates me, I shall read them regularly. 

[Video clip stopped] 

Dr. Dave Johnson: If that poem doesn't melt your heart, you have a heart of stone. 

Dr. Pat Loehrer: What you can't appreciate on a podcast this incredible poem. It's just incredible. 

Mr. Bill Brummel: He's a marvelous character. You know, you're mentioning your daughter, my daughter was eight years old. And my son was five-and-a-half in terms of when I had my original cancer diagnosis. In fact, we celebrated his sixth birthday in the hospital. On the last day of my radiation treatment I had to be hospitalized three times because I couldn't keep anything down. But my daughter commented, this was when she was graduated from high school, I think, that she really thought that I was going to die. And we said no such thing. In fact, like Pug, we tried to reassure her that my tonsil cancer diagnosis was not life-threatening. But in her mind, she remembers it as being a case that my dad might die. 

Dr. Dave Johnson: Yeah, my daughter reacted the same way. And she kept a diary at the time. When we went back and read her diary, she actually wrote, 'My dad is going to die.' Yeah. The other clip that really stood out to me also involved a poem, and it comes from Sara. Sara is a real star in this. It's a poem to her husband, Nigel. It's a cancer survivor's reflection on how they dealt with their cancer and their spouse during the intensity of the treatment. I wonder maybe if you could make a few comments and maybe we could show that clip. 

Mr. Bill Brummel: Well, definitely. The spouse or partner, the impact can be great. And in Sara’s case, in her words, she took out her frustrations on Nigel. And Nigel was a great caregiver and just dealt with it and never stopped loving her. Interesting thing about this poem, it was not a poem for the choir. It was after we finished shooting one of the rehearsals. I was talking to Sara, and she casually mentioned that, “Oh, I’ve written a poem to Nigel, but I'm scared to show it to him. Like he hasn't seen it or heard it.” And being a film producer, I said, “Wait. Don't read it to him. Don't show it to him.” We were scheduled to go out and shoot the segment with her at her home in a week or two. So I said, 'If you would read it on camera, I would love you forever.' I would have loved her forever anyway. So what you see, it's almost one take of her reading the poem to Nigel. And none of us in the room, of the crew and me, Nigel, had ever read the poem. And Nigel had never heard of the poem. 

Dr. Dave Johnson: This is very real and in many ways, raw. I think it really illustrates that relationship. Again, not to talk about my own illness, but I felt the same way Sara did. 

[Video clip playing] 

Sara Bowden-Evans: So I need to read you something. 

Nigel: You need to read me something? 

Sara Bowden-Evans: Yeah. 

Nigel: Go on then. 

Sara Bowden-Evans: I wrote another poem that is for you. 

Nigel: For me? 

Sara Bowden-Evans: Yeah. I’m going to try to read it very easily now. 

Nigel: When did you write this? Kept that very secret. 

Sara Bowden-Evans: Because I don’t know how else to say what I needed to say. 

Nigel: Okay. 

Sara Bowden-Evans: 

I'm sorry for the pain I caused. 

I’m sorry for the hurt. 

You were always in the firing line 

To take the brunt of course 

It’s not that I’m actively directing it to you. 

It’s just you’re the one that’s always there. 

And that’s the truth. 

 

They say we always hurt the ones we love. 

And there’s a reason. 

And that's because the ones you love the most know all your feelings. 

You’ve suffered with me. 

All the pain, the sadness, and my darkest days. 

You forgive whatever nastiness I throw. 

But I don’t know how to ever repay all the things you’ve done, 

apart from writing down in words. 

Nigel: That was so beautiful. Thank you. That’s amazing. 

[Video clip stopped] 

Dr. Dave Johnson: I know that there are no words that can describe that. 

Mr. Bill Brummel: Yes. Sara really is the emotional center of the film. And from a producer's standpoint, I don't mean to sound crass, but you always can get behind a person cry on camera. 

Dr. Pat Loehrer: When I was watching the movie, though today, could you get behind me because I was crying. 

Mr. Bill Brummel: Well, I usually, at any public screenings, and because of COVID, there hasn't been a lot of them, but I try and view the film from the back of the audience. And I'm scouring the audience to make sure they're laughing or crying at the appropriate places. And they usually are. 

Dr. Dave Johnson: So Bill, what message would you like for oncologists to take away from your documentary? 

Mr. Bill Brummel: Well, very simply. It's the message I would like oncologists to hear and implement, and a lot of them do, but it's to treat the patient and not just the disease. And that's it in a really simple form. The psychosocial consequences of any cancer diagnosis are challenging, and especially as Dr. Sinha said, in head and neck patients, where the treatments often leave a patient disfigured in a noticeable and visible way. Shame, anxiety, and depression are common enemies. Support the psychosocial health of your patients. And I'm convinced that if you do that, their physical condition will improve. 

Dr. Pat Loehrer: Well said. We certainly can't let you out of here without showing a clip from the choir’s performance at the concert that you filmed. In fact, there were several, several songs. I think we're going to show one of them there. But can you tell us a little bit about the film distribution plans, the business of this, how will the public be able to see this film? What's happening on that end? 

Mr. Bill Brummel: Well, we have a commitment from PBS if I want to show it on the PBS network of stations. We're aiming for a 2023 broadcast, probably spring. Currently, I really want to maximize the impact the film will have with the general cancer community. And for the last six months or so, we've initiated impact and outreach campaigns. And by that I mean we're doing branded screenings and webinars and speaking and showing films at conferences. We're aiming at the cancer advocacy and support communities, universities, medical schools, clinician associations. We've done a bunch so far. We're doing more. We're also trying to partner with corporations or nonprofits to bring these screenings to cancer advocacy and organizations that might not be able to afford a screening. And we're looking for underwriters with the PBS podcast. But the film will get out there. I just really, for the time being, want to concentrate on the cancer community. 

Dr. Pat Loehrer: That's terrific. So we're going to show a one of the performance clips. Do you want to set that up for us, there. 

Mr. Bill Brummel: COVID shut down the choir. So every time I see a performance, it makes me long for more and more performances. But this clip is as rendition of Ain’t Got No, which was popularized by Nina Simone in the ‘60s. It was originally written for the musical 'Hair', but one of the unique things about the choir is that they at times rewrite lyrics to songs to make them more illustrative or the lyric to explain the full impact of having a laryngectomy. So this is the song we're playing last, it's the finale of the concert and the film. The first half of the song speaks to all the things we've lost by not having a voice box. Second half, which we’ll see, speaks to all the things we still have, can still do in life. Sara helped adapt the words. It was a group effort. 

[Video clip playing] 

Singer: [singing] What have I got? Why am I alive anyway? Yeah. What have I got? Nobody, nobody can take it away. I… 

Choir: [singing] got my hair, got my head, got my brains, got my ears, got my eyes, got my nose, I got my mouth. I got my smile. 

Got my health, got my tongue, got my teeth to make these sounds, in my head I change my breath, I got control. I got voice. I got poems, I got friends, got my songs, got my limbs, got my heart, got my soul, got my pride. 

I got my voice. 

Opera Singer: [singing] What have they got? Sing, what have they got? 

Choir: We’ve found our voice. 

[Applause] 

[Video clip stopped] 

Mr. Bill Brummel: Obviously, the woman that sang at the end did not have a laryngectomy. She's a professional opera singer. 

Dr. Dave Johnson: I think I can safely say, for all of us here today, that we thank you for producing such an inspirational film, and one that really I think captures the emotions that go along with, one, being diagnosed with cancer, two, going through treatment, three, experiencing survivorship and the support. And Dr. Sinha, to you, thank you for inspiring Bill to doing that. 

We have maybe just a couple of minutes if there any questions from the audience. We haven't received any via the text. So if there's any questions, there's a microphone here. And as an added incentive, if you ask a question, you get a free Oncology etc. t-shirt. 

Dr. Pat Loehrer: Better yet, we may not give them. That might be a great incentive. 

Dr. Dave Johnson: Don't trample one another running to the microphone. I see, there are people who want their t-shirt. So please. 

Question 1: Thank you so much. That was a beautiful film. I'm a nurse, and it's a great inspiration. And I'm sure it's a great inspiration to the patients. Are there any similar organizations in the United States doing a choir? 

Mr. Bill Brummel: Not that I know of to the extent that Shout at Cancer does. There's several laryngectomy support groups or laryngectomy clubs around the United States. And every once in a while, you'll see one that the patients get together and sing for fun or they do a Christmas performance at some event. But Shout at Cancer takes it really to an unheard of level. I've never heard of anybody doing this in the world as much as they do in terms of the original writing, the professional musicianship, the rehearsal. So I'm not aware of any that take it to that extent. 

Dr. Pat Loehrer: I just want to say from my own behalf, we're in this world. The best thing you can do at the end of your life is to say that you made a difference. And this film, what you have done has made a difference. As long as I have the capacity to remember, I will remember you and I will remember this film. So thank you very much. 

Mr. Bill Brummel: You're welcome. And thank you for saying that. I’m touched. And that exactly was the point. I think that was the point when Dr. Sinha said, 'You should do a documentary about the psychosocial effects of having a laryngectomy recovery and living with a laryngectomy.' I don't know that he thought I’d do it to this extent, but that is the message I want to inspire people who’ve had a laryngectomy, and I want the world to know and to relate better to people and understand people. 

Dr. Uttam Sinha: That gives me a lot of joy in what it means to recognize leaders like you and the society of head and neck cancer patients. And Bill has been a driving force for me to stay in head and neck cancer surgical oncology care. 

Dr. Pat Loehrer: The world's a better place because of both of you. 

Dr. Dave Johnson: Yeah, for sure. 

Dr. Pat Loehrer: For those that were here in the audience and those at home, don't forget, you can claim credit for this. Provide feedback. And if you could, I really would like to have a little bit about who's the best-looking podcaster, if you could. 

Dr. Dave Johnson: I think that's critically important. And I appreciate Dr. Sinha’s recommendation. It's made me rethink my take two aspirin and call me in the morning recommendations. So I'll have to be more productive in the future. 

But this brings us to the end of this podcast. I don't know if any of you in the audience have listened to our previous Oncology, etc. podcasts. We hope that you did. And we hope that you will. As we've said at the end of each of our podcasts, we welcome ideas. We will literally talk about almost anything oncology related or not. That's why we have the 'etc.' on and it's been a great joy for Pat and me. Both of us enjoy doing this. We've been great friends for over 40 years. And it's a wonderful way of cementing the friendship. 

So thank you for all of you who are here in the audience. It'll take about an hour to file out with this large crowd so please be careful as you move to the doors. Thank you. 

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org. 

 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. 

 

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