(click the image above or click here to watch the podcast)
Declan Cosgrove (DecPlay founder) and Dr. Shirley D'Sa, a haematologist with over 20 years of expertise in Waldenstrom's Macroglobulinaemia, explore practical ways cancer patients can improve their quality of life.
Summary of Episode 2 (Health and Piano Podcast)
Declan speaks with Doctor Shirley D'Sa, a haematology specialist at University College Hospital London. They discuss Declan's condition Waldenström's macroglobulinaemia, a rare blood cancer, and how attending a medical conference connected him with other patients and gave him hope.
The conversation explores how music and social connections support healing, the importance of holistic healthcare approaches, and practical advice for newly diagnosed patients. Professor D'Sa shares insights from her 20+ years treating this rare condition and emphasises the value of community, stress reduction, and maintaining overall health alongside medical treatment.
Chapter Summary
Meeting Through Medicine
- Declan introduces Professor Shirley D'Sa and explains how they met at a conference after his Waldenström's macroglobulinaemia diagnosis, which transformed his outlook from fear to hope.
Understanding Waldenström's Macroglobulinaemia
- Professor D'Sa explains this rare blood cancer, affecting 5-8 people per million, and how treatments and patient communities have dramatically improved over her 20-year career.
The Power of Music and Connection
- Declan describes how his piano teaching method helps thousands of students aged 60-95, and how music creates therapeutic social bonds similar to what he experienced at the patient conference.
Holistic Healthcare Approach
- Professor D'Sa discusses treating the whole person, not just the disease, emphasising how music, social connections, and stress reduction complement medical treatment.
Making Music Accessible
- Declan explains his simple pattern-based teaching method that allows anyone to compose music within minutes, focusing on personal enjoyment rather than perfection.
Pattern Recognition in Medicine and Music
- Both speakers explore how recognising patterns helps in medical diagnosis and music learning, whilst acknowledging the complexity patients face with medical terminology.
Patient Empowerment Strategies
- Discussion of practical ways patients can take control, including physical activity, meditation, yoga, and mindful music listening as stress-reduction techniques.
Advice for Newly Diagnosed Patients
- Professor D'Sa provides practical tips including bringing someone to appointments, finding reputable information sources, and not being afraid to seek second opinions.
Lifestyle Factors and Outcomes
- Exploration of how stress affects health outcomes, the importance of moderate exercise and nutrition, and warnings about expensive internet health promises.
Alternative Wellness Practices
- Conversation about sound baths, meditation, and other calming practices that may provide therapeutic benefits through stress reduction.
Musical Influences and Personal Connection
- Professor D'Sa shares her diverse musical background from East Africa and India, emphasising how music connects cultures and provides emotional support.
Useful Links
IWMF - https://iwmf.com
WMUK - https://www.wmuk.org.uk
DecPlay - https://decplay.com/FREE
VIDEO TRANSCRIPT
Waldenstrom's Macroglobulinemia: Expert Insights on Treatment, Community, and Holistic Wellness
Introduction: Meeting Through a Rare Blood Cancer Diagnosis
Declan: Welcome to the Health and Piano Podcast. I'm very honored to have a special guest with us, Shirley. Would you like to introduce yourself and share what you do?
Shirley: Absolutely. Thank you very much for having me, Declan. My name is Shirley D'Sa, and I'm a professor of hematology at University College Hospital in London, UK. I met Declan through my work treating patients with rare blood disorders.
Declan: I was diagnosed with Waldenstrom's macroglobulinemia, which has taken me about a year to pronounce correctly, but it's otherwise known as WM, which is a type of lymphoma cancer. I was diagnosed about 18 months ago, and it was all very sudden and new.
I attended a conference in London nearly a year ago and met Shirley there. I was blown away by the amount of information available and by meeting other patients socially. I found it very useful, but I was really impressed by how the treatments have evolved over recent years. They're much better now, and the quality of life for patients has really improved. I was genuinely encouraged. I thought I might leave the conference feeling down, but it was absolutely the opposite.
What is Waldenstrom's Macroglobulinemia? Understanding This Rare Blood Cancer
Shirley: I'm very glad to hear that. For the uninitiated, hematology is the branch of medicine that deals with blood disorders. Within that field, there are many components of blood that can malfunction. I studied hematology at University College Hospital and remained there as a specialist.
I ended up specializing in this very rare entity, Waldenstrom Macroglobulinemia, which is named after a physician from Sweden who made early observations under a microscope about the behavior of blood cells and proteins. Although the name is a mouthful, the good thing is that despite being a very rare disease, there's been an amazing community of both physicians and patients worldwide who have focused on improving outcomes.
When I say rare, it affects about five to eight per million population. Any rare disease struggles to get attention because although there are many new treatments available for all diseases, including cancers, conducting trials becomes quite difficult when dealing with a rare disease. It doesn't stand out easily, and getting people's attention is often challenging.
Medical Advances in WM Treatment Over Two Decades
Throughout my career—and it's quite a long one, as I've been a consultant for more than 20 years—I've seen remarkable changes in this area. The improvements span from diagnostics to terminology to gathering a community of physicians to patient empowerment through organizations such as the International WM Foundation and, in the UK, WMUK.
It's been fantastic, and I've been swept along by the enthusiasm, which has been backed up by significant scientific advancement. This has been curated by a group of very dedicated physicians, both in the US and Europe, and is broadening out to other parts of the world as well.
It's actually a very positive place to be. What we can't do is change what happens to us—it just happens. The question then becomes how to manage, how to cope, and how to get the resources you need to live with a condition like this, which you can live with for many years.
Not everyone needs treatment initially. Some people are monitored for many years and may never need treatment. Others need treatment, respond well, and may need further treatment later. When I met Declan, I was interested to hear about his line of work because I always take an interest in the person. What people do and how they live shapes them, and I was particularly interested to hear about the service he offers to people who are also struggling.
The Power of Music and Social Connection in Healing
Declan: I found the conference uplifting in both tangible and intangible ways. The information was valuable, but chatting with other patients and making friends had this intangible quality that left me feeling high. I walked into the building feeling isolated—having this strange condition that I didn't understand, not knowing any other patients, and being uncertain about my future.
Even though nobody can predict what will happen in the future, just knowing that there are other people facing similar challenges makes a difference. We're social beings, and social interactions automatically lift our spirits. I definitely experienced that at the conference and continue to through Zoom meetings, groups, and other meetups.
It was only when I became ill that I realized the power of community—something our students had been telling me for years. We have several thousand students, mainly aged 60 to 95, and my primary goal was to teach them piano in an accessible way. I invented a method based on how I play by ear—how I can instantly hear a tune and know how to play it.
I realized that if I could write this down in a teachable, simple manner, people who couldn't learn the traditional way would be able to access music. That was my goal: making music more accessible. But then I heard from people who had lost partners, were grieving, had cancer treatment, and faced various challenges. They said music had transformed their lives, and being connected with other students was equally important.
We purposely implemented things like a buddy scheme so people can connect with one or several others. This has transformed their experience not only of music but their lives overall. After experiencing this myself at the conference, I became very interested in creating more interaction and social connections between people.
The Holistic Approach: Treating the Whole Person
Shirley: I agree completely. I'm formally trained as a physician, but I've always had an interest in the holistic approach because we are whole people. Our physiology may go wrong at times, and as healthcare professionals, we try to correct that using therapies, some of which are powerful and could even be considered toxic, but needs must.
It's important not to neglect the other facets of our being—our spiritual being. I don't necessarily mean religious, but the fact that we are whole people with all our senses, which have a big impact on us. We are social beings 100%.
I can say for myself that even when I'm feeling busy or tired, I find nothing more invigorating than coming in and meeting people at work, in clinic. I always get uplifted by dealing with other human beings, and if I can help them, that's what I want to do.
The healthcare system is quite difficult to navigate, and I think that adds to stress. From my own experience with family members being unwell, it is very challenging. That's why I'm so much in favor of this community approach to things, whatever form it may take.
Music as Medicine: The Therapeutic Power of Sound
Music is amazing and a wonderful way of bringing people together. It brings me great solace—if I'm on my commute and feeling tired, I'll put on my playlist and end up having an internal dance or humming along, trying not to look foolish on the tube. I come away feeling quite uplifted.
I also think about the musicians and marvel at how they put it together—the creativity, whether it's Afrobeat, rap, or classical pieces. What brain power goes into creating amazing music? I couldn't conceive of it, so I find that enriching at many levels.
Sometimes you need to be melancholic, and I quite like listening to peaceful, calming music. Other times it's more about exploring different cultures. London is very multicultural, and I encounter patients from all kinds of backgrounds, as well as staff. I appreciate that very much and am curious about the music people are exposed to—their origin stories and the soundtracks of their lives.
I think it all works really well and is important to include in one's journey of coping with challenges.
Making Music Accessible: Patterns and Simplicity
Declan: I'm mainly focused on teaching people how to play music and all the benefits that come from that—composing, writing, and playing by ear can be relatively simple if you know how to unlock the patterns.
As you mentioned, music can seem very complicated from the outside. When you look at sheet music with all those dots, it gets complicated, but there are incredibly simple patterns within that complexity. That's my focus.
I spent decades on the classical side as a child, and for me, it was a grind—grinding through year after year to reach a certain level. But then I discovered Beatles music with friends at school. We formed a band, and that was a completely different type of music based more on playing by ear and working from a few chords.
Many things can be demystified if you know how to spot patterns. One thing I really encourage our students to do is what I call "doodle"—improvising that leads to composing. Most people think you need years in college to compose, but I've taught children as young as four and people with special needs. Anyone across the spectrum can start composing within minutes if shown a couple of patterns and encouraged to remove their internal constraints.
Most of what stops us is believing that music is complicated or that playing a wrong note will make us feel silly. If you show someone a pattern with their left hand and tell them to play any white notes while it sounds pretty good, then people try it, and it's amazing.
The purpose isn't to create something that gets played by a philharmonic orchestra and wins awards. It's simply to play music that lifts your own spirit.
The Power of Mindful Listening
I was talking to Doctor Deeks, who had such a simple take on music therapy. Even if you don't want to learn to play or haven't learned yet, simply think about what songs make you smile, what songs bring back memories from the past, and put them on a playlist. Then sit down and listen to those songs with nothing else going on.
Usually, we listen to music while running, walking, making food, or traveling—music becomes background to other activities, which is fine. But his point was that if we just listen to music we've already chosen because it moves us, a bit like meditation, focusing on that for even three minutes can really transform how you feel.
I'm very interested in all aspects of making music or using the power of music to improve wellness—making it more accessible, whether through playing an instrument or simply being aware that taking three minutes to focus on a chosen song can enhance how you feel.
Pattern Recognition in Medicine and Music
Shirley: I agree, and as you were speaking, I was thinking about pattern recognition, which very much applies to medicine as well. You start with rigorous training so you understand fundamentals, but as time goes on, you internalize much of that. You spend your life pattern-recognizing when patients come to you with certain conditions or symptoms, and you build on that.
I think all humans like pattern recognition—it's comforting when you find patterns because it helps things make sense. Medicine has become very complicated, and when people face a condition thrust upon them, they're also faced with a whole new vocabulary, like "Waldenstrom Macroglobulinemia."
Along with that comes many other words you must learn to understand what's happening to you, why things are being done, what they mean, and whether your condition is stable. All of this makes it very important to think of other ways of relaxing and connecting with yourself.
Taking Control: What Patients Can Do for Themselves
I'm a great believer in physical aspects of keeping well, such as yoga and exercise—nothing too vigorous in my case, but things within our power. This speaks to what you do as well. When you have a condition, and because medicine is so complex, it's easy to feel that things are just happening to you and you're a recipient of various treatments.
But as an individual, you still have power over certain things. You can choose to take time to think, reflect, meditate, do yoga, go for walks, or spend time in nature. Everyone talks about these things, but few of us find time to actually do them. Music fits into this category as well.
As physicians, we work with other practitioners to utilize these methods so people feel more empowered to do things for themselves. For example, there's a wonderful lady named Anne Grace who works with the IWMF and conducts regular sessions of chair yoga and other practices via Zoom. I know people find that very helpful.
Even small bits of exercise and little actions can make a big difference over time, even if you don't feel it day to day. Usually, even small amounts of physical activity will get endorphins going, uplift your spirits, and provide muscular exercise. If you don't use it, you lose it.
These things can easily be forgotten in a busy medical world, both as a patient and as a doctor. Keeping mindful of these factors where you can play a role in your own life and health should be encouraged.
Tips for Newly Diagnosed Patients: Making the Most of Medical Appointments
Declan: Do you have tips for someone newly diagnosed who's going to see their consultant? How can they get the most out of their appointment?
Shirley: Absolutely. We've discussed this in joint patient initiatives. It's very helpful to bring someone who can be your second brain and take notes. I've read that when people first hear about a diagnosis, they may hear the word "cancer" and freeze. They may appear to be listening, but much of the information is lost.
It's good to go with someone and look for available materials. However, one warning: if you go down the wrong path, you may end up misinformed. The rate of information change on the internet is breathtaking, and AI has now joined the situation.
It's important to go to reputable sources. Ideally, your physician, nurse, or healthcare provider should guide you. There are established organizations like Macmillan and Lymphoma Action—well-known charities that curate and prepare materials with professional input.
Sometimes with very rare diseases, this may not be sufficient. It becomes important to look for reputable information from sources that specialize in that disease area with input from experienced experts.
Finding Reliable Information and Getting Second Opinions
If you do a Google search, you may not end up with the most reliable information first. Be mindful of what you click on, and if necessary, go to organizations like Macmillan to double-check where you can get reliable information. Ask your healthcare provider or doctor.
Try to find the right information, but bear in mind that information is often generalized and may not be specific to your condition. There may be scary-sounding information that doesn't apply to you. It's really important to avoid worrying about things that may never apply to you, as that's wasted emotional energy. It's difficult to avoid, but try to look at information with someone's input and double-check with your consultant.
Don't be afraid to ask for a second opinion. Especially with a rare condition, people do their best in all hospitals, but sometimes consultants may not have seen many patients with that particular disease. You have the right to request a second opinion.
There are several centers around the UK with WM specialists. Currently, the International WM Foundation website is a good place to look, and WM UK also has connections to different centers with extensive experience.
If you feel your needs haven't been met, don't give up. Dig deeper and try to find help and advice, possibly through consultation with an expert. Don't face this alone—there is help available. Getting the support you need is good for everyone: you, your family, and society. There are resources specifically for WM and many other diseases as well.
Lifestyle Factors That Influence Patient Outcomes
Declan: Have you noticed any patterns in patients who have better outcomes? Are there states of mind, attitudes, or lifestyles that correlate with better outcomes?
Shirley: It's always difficult to speak anecdotally, but yes, in my 20-plus years in the WM world, I'm pretty certain that stress is unhelpful. The challenge is that none of us can easily escape stress, whether or not we have WM.
I've been reading about how stress triggers certain physiological processes designed to protect us, but these mechanisms evolved for situations like running from a saber-tooth tiger rather than the continuous, simmering stress we experience now. This leads to more stress hormones and encourages a more inflammatory state.
It's very difficult to analyze this in any individual, but I believe stress is a factor. However, stress means different things to different people—some need stress to perform, others don't. In situations of illness, that kind of stress is probably unhelpful but very difficult to eliminate.
This is why finding strategies to reduce stress and tap into your parasympathetic system—the "rest and digest" side of things—is very important.
There are also biological factors within diseases that predict different outcomes, which we address through medical research. We're trying to understand how genetic mutations or markers should influence treatment adaptation to reduce risk.
Practical Health Recommendations for Better Outcomes
In terms of self-care, it sounds basic, but it's important to stay active, exercise, eat sensibly, and live in moderation. We should all do this, but perhaps more so with an underlying condition.
I also advise keeping away from amazing promises on the internet. My general advice: the more expensive something is, the less likely it is to be effective, because there are often ulterior motives. I'm not saying supplements don't work, but any supplement taken in massive doses is not physiologically helpful.
For general advice, vitamin D supplements are good for everyone in the Northern Hemisphere. Vitamin D has properties that extend far beyond bone health, so I recommend it to most people.
Don't ignore other health aspects—keep fit, get regular checkups. If you're a woman of certain age, get mammograms. Monitor blood pressure, diabetes, and other health markers. Even if you have a disease, you're still part of a body with different organs, and the fitter you are physiologically, the better you can tolerate whatever comes your way.
This brings me back to the holistic approach.
Exploring Alternative Wellness Practices
Declan: The stress factor is interesting. I haven't done much meditation myself, but I have a friend who does sound baths. You lie in an old church where sound reverberates, with different instruments, sound bowls, chimes, and drums. The feeling is amazing—you come out so relaxed. I'm interested in exploring that therapeutic side, because even if it's just a pleasant experience, I wonder if there are additional therapeutic benefits.
Shirley: I think the evidence for these practices won't be found in scientific journals, but considering human evolution, many of these practices have been present across cultures and traditions. They make sense because they're simple ways of connecting with your senses gently, not harshly.
Modern living involves a lot of noise and activity that can be overwhelming. I don't have scientific evidence, but I personally enjoy these experiences. The sound of a gong hits you at a level that can't help but relax you. It may not change your whole life, but in that moment, it can make you feel calmer, and we need more calmness in our lives.
Musical Influences and Personal Soundtrack
Declan: On a different note, do you have any favorite songs that come to mind?
Shirley: So many, actually. I grew up in East Africa, so my youth's soundtrack was very mixed because we lived in an expatriate community. I come from Goa in India, where there was again a mix of Western music. My aunts and uncles were into ballroom dancing—cha cha cha, rock and roll—at community gatherings.
I love rock and roll groups and the classics. I also liked Simon and Garfunkel more than the Beatles personally, because I heard them more and love their meaningful lyrics and musicality. My sons love Afrobeat and various rappers. I love all kinds of music—whether it's Kendrick Lamar or Chopin's waltz in C-sharp minor.
I've been exploring African music, including West African styles. There's so much to learn from music, and people who create it are so creative. I really admire that because I don't think of myself as very creative—I'm more analytical—but I have the capacity to enjoy creativity.
My playlist grows every day. When you access online music platforms, you can find pretty much everything, which is one of the good things about technological advancement.
Conclusion: The Journey Continues
Declan: Thanks so much for taking the time to speak with us. I know you're incredibly busy, and I really appreciate it.
Shirley: It's been really nice talking to you, Declan. Thank you so much for inviting me.
This conversation explores the intersection of medical expertise, patient experience, and holistic wellness approaches to managing Waldenstrom's macroglobulinemia. For more information about WM, visit the International WM Foundation or WM UK websites.
