- February 19, 2020
Sylvie Leotin is many things. She started her career in France as a gold-medal ballerina, later moving to Silicon Valley as one of the first women to research at Stanford Robotics Laboratory. She has held positions in engineering, products, marketing, sales, business development, and communications; she is the founder and CEO of Tech Atelier, a multidisciplinary strategy agency advising startups and beyond. A contributor to media, academic, and literary publications, she holds an MS in Engineering and Economic Systems from Stanford University, as well as an MS in Computer Science. After a 20-year career, however, she became something else entirely: a cancer patient. Struggling to be recognized by her healthcare providers, she began to write about her experience. A new voice emerged, and her transformation led her to patient advocacy. A creative intellectual, her skill has always been in understanding unvoiced needs. And that’s exactly what she does in her blog, which has been shared widely around the world. In this frank and philosophical interview, she tells Lauren about the long road to her breast cancer diagnosis…and how she continues to seek improvement in patient-centered care while embracing life after treatment.
Key links mentioned in this episode:
Tune in as Sylvie shares…
- that she knew something was wrong, but had inconclusive test results — and waited 3 years for a solid diagnosis (20+ biopsies and many doctors later)
- that meditation and hypnosis have been incredibly healing for her
- additional modalities that have helped her: Reiki and healing touch
- that the manner in which the medical treatments recommended for her breast cancer were administered felt both sterile and brutal
- that taking care of yourself with chronic illness is a full-time job — and it’s hardest when you’re alone
- something that really helped her navigate treatment: a workbook a friend co-created with her based on National Comprehensive Cancer Network guidelines
- that she’s writing a book based on her experience — for both patients and practitioners alike
- that she has developed medical PTSD since starting her cancer treatment
- her realization that cancer is an illness completely misunderstood at the human level
- that it takes great strength to insist on changing doctors when you need to
- that healthcare needs to be redesigned around patient comfort
- how cancer is misrepresented in media
- that cancer is a chronic illness
- the emotional toll cancer takes on a patient
- that chronic illness forces patients to transform — and this involves grieving one’s old self as well as opening the door to one’s new self, and then communicating that to others
- how she has embraced her transformation and is getting closer to who she is now, every day
- that she has made a conscious effort to face her mortality
- why it was crucial for her to find her voice and learn to ask for what she needs
- that you cannot heal by fighting; healing comes from letting go
- that Twitter is her favorite support space as a cancer patient
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Lauren: All right guys, thank you so much for joining me. I am here today with the lovely Sylvie Leotin. She has a background in engineering, business and science, and is living with cancer — and she’s going to tell us all about it. She’s created a popular blog about the cancer patient experience. So Sylvie, thank you so much for joining us today.
Sylvie: Thank you, Lauren. It’s a pleasure to be here, seeing you in person.
Lauren: Yes, absolutely. I could not agree more. It’s such a pleasure, because we talked before we were able to record today, and really had a lot to talk about. So I’m really excited to dig into more of that today.
Sylvie: Likewise. Thank you for doing this.
Lauren: So why don’t we start from the very beginning. Why don’t you tell us when and how you first realized that you had something going on, and how you addressed it?
Sylvie: Actually, a year before cancer, I started to get really debilitating, daily chronic migraines. And I was actually incapacitated for six months, until I got the diagnosis which you know about.
A year later, I got a biopsy that was very puzzling — because it resulted in a non-result.
So I was told that it was not cancer … but it was not not cancer. So that was very difficult to to handle. I ended up spending three years and having 20 major biopsies, more than 40 scans, and 500 medical visits to finally get a cancer diagnosis three years later in February of 2018.
Lauren: So what kind of cancer are we looking at here specifically for you?
Sylvie: I have breast cancer.
Lauren: So this is something we’ve talked about before on the show, and one of the more commonly discussed forms of cancer. So what was it like going through this process where, interestingly, as a woman, a woman of color, not being believed by your doctors … this is a familiar story we hear … but how did you finally get them to listen? And how did you know something was going on?
Sylvie: I think I just knew in my bones and my guts …
Lauren: We often do.
Sylvie … that something was wrong, yeah.
Too many things were just happening at the same time.
I had an abnormal blood test as well, and so I was also on the watch for blood cancer. Just very strange symptoms. I’d never been sick my entire life, and then suddenly all those things are happening at the same time.
Lauren: And did you have doctors saying to you that you were a hypochondriac, that you were making this up?
Sylvie: Certainly with the migraines! That took seeing a lot of doctors, and I did experience people just …
Lauren: Brushing you off?
Sylvie: Yes. But I kept at it. I kept looking and I spent, I don’t know, I must have seen 10 different oncologists. So I really kept pushing to find it. I did all sorts of alternative medicine and stress management and pain management classes, and that was helpful to some extent. But what really made a difference in my life was to learn, believe it or not, hypnosis and meditation.
Lauren: So you learned those through someone who was obviously licensed, like a therapist?
Sylvie: Oh yes. I actually learned this from the father of hypnosis at Stanford, Dr. David Spiegel. So I learned those techniques, and then I joined a meditation center and am now a very experienced meditator.
I fell in love with it as soon as I started it.
Lauren: So has that been something that’s helped you with day-to-day management?
Sylvie: Oh, yes. I would not have been able to cope with my migraines, first, without that. Because it’s a form of migraine called hemicrania continua (HC) that’s very rare, and half of my face is pretty much disabled.
Lauren: Like a Bell’s palsy kind of situation?
Sylvie: It was hard to kind of understand. I thought I had had a stroke when it first happened because I had weakness on one side. But none of the migraine medication works, and none of the painkiller works. So
I just had to do something, and I took the MBSR (Mindfulness-Based Stress Reduction) class in the hospital first, and that was helpful. And then I took, actually, a second time. And then I learned to meditate. As my life was getting harder and harder, I started to increase the amount of time I meditate every day. That has really helped me.
When I got diagnosed with cancer, I actually doubled my meditation time. That was really helpful.
Lauren: So it sounds like those were services that were readily available to you in the hospital and through your specialists, is that right?
Sylvie: Yes. I was very lucky to be in a hospital that has a center for integrative medicine.
Lauren: Makes all the difference. So where are you in the journey to treatment now? You’ve gotten your diagnosis. We’re now three years down the line, you mentioned. So have you been undergoing chemo and radiation? What treatment path have you taken, aside from the mindfulness and hypnosis techniques that you’ve been using to manage your pain and stress levels?
Sylvie: So I’m actually just a year-and-a-half. And the modalities that have helped me the most aside from meditation are Reiki and Healing Touch. There is programming in my area of Healing Touch volunteers that are working with cancer patients.
Lauren: You do hear about Reiki being used among cancer patients, which is wonderful.
Sylvie: Yes. A friend of mine had cancer few years before me and she told me that was the most helpful modality, and she gave me the name of that organization and I tried it. I’m very sensitive to energy. Acupuncture and being a meditator just affects me very strongly.
Lauren: What about any traditional Western techniques? Have you undertaken more holistic methods to heal, or are you also using traditional Western hospital visits?
Sylvie: I got my treatment and I’m on maintenance drugs I’m taking every day.
Lauren: So you’re combining everything.
Sylvie: I am adding things that are helping me. I thought that the cancer treatment was very brutal, and I wrote an article, that was actually published in a medical journal, on my treatment.
It really was hard for my mind to accept that this was treatment; it really felt like torture.
Lauren: Well, because many cancer treatments make patients so sick as well. And so you have to live through being sick to feel better — which is, of course, very confusing, I imagine.
Sylvie: There is certainly some of that. But also the way it’s administered and everything.
Lauren: And we’ll link to that article on the website page as well, so that everyone tuning in can go to those resources and read what you wrote about. Because this is one of the articles that really made your blog quite popular, and made people find you as an advocate in the cancer space, right?
Sylvie: A couple. This one helps medical providers more. It was published in the Journal of Patient Experience and actually was downloaded more than 1,000 times and it’s one of the highest scoring articles in the paper. So that really expanded …
Lauren: Did you have to give up the work that you were doing in order to undertake maintenance and treatment for cancer?
Sylvie: Absolutely. I’m a single person, living alone, and it’s just incredibly time-consuming to get the diagnosis when you don’t have a caregiver. Very often you hear about how caregivers are completely drawn and overworked by taking care of someone with cancer. So imagine when you don’t have that, and the cancer patient has to play that role. It was more than a full-time job. I spent all my morning on the phone, talking to the hospital and talking to insurance companies to manage all the different things; all the afternoons in medical appointments. At 6pm, I was dead in bed.
Lauren: We have this conversation a lot on the show, the recognition that pursuing health care in this country is a full-time job. I think there are statistics about cancer in particular, that your average patient diagnosed with cancer is going to spend all of their savings in one to two years, because it’s that expensive to find and get care, as well as to treat cancer. And I just wonder how patients are expected to continue with those kinds of pressures, and how you’ve managed to make it work?
Sylvie: It’s very stressful for every patient.
Lauren: That’s where the mindfulness helps, I guess.
Sylvie: Exceptions are people that are very wealthy, but the majority of patients are really affected financially by getting your cancer diagnosis. And so in addition to managing everything, you get a diagnosis and you have to apply for financial assistance and look at all the different programs and run GoFundMe campaigns. It’s just exhausting.
Lauren: So you had to do all of that to get your treatment. That’s amazing. So you managed to make that happen. You mentioned that you were your own advocate. Were you able to turn to any friends or family at all along the way, to lean on, to get support from?
Sylvie: Yes. I have a lot of degrees in engineering, and they’ve come in very handy with my cancer journey — to do research myself on a lot of different things. One thing that has been extremely useful … and I just got sent, completely unexpected … is when I shared my diagnosis with friends on CaringBridge. A friend of mine I hadn’t seen in 20 years sent me an email, and said that he was a twice-cancer survivor. I knew he had cancer once, but I didn’t know he had it a second time. And that he had found it very useful to do some research and actually used the National Cancer Institute’s guideline book. He created an account, and he said, “I have access to this tool that typically doctors are using to help decide what your diagnosis should be. And if you want, I can help you look at it.” And I was, like, “Wow, sure!” He showed up at my house the next day, and we went on the Internet. We downloaded the breast cancer NCI guide, and it was 200 thick pages of documents, written in languages that I just could not understand. But he had gone through this many times. The one thing that was a surprise and was difficult … every cancer has a different language, basically … the terms, and all those things. We read my pathology report, but it’s not like he could tell me what it is — because he had a different type of cancer. So we have to struggle with that and understand it.
But eventually we were able to use that incredible tool that allowed us to build a kind of a decision tree of all the different variables in my pathology report.
Lauren: You really do sound like an engineer right now!
It’s really great. Because I would never have thought to do something like that. Of course, you look up information. But to really build for yourself a treatment and diagnosis guide is so clever.
Sylvie: Yes. And I’m glad my friend helped, because I do have a background in engineering. But I think it was a few days before I got diagnosed, and I would have been too overwhelmed to try to tackle this on my own. So that was really useful because at the end, we printed what should be my treatment. And he said, “Bring a copy to your medical oncologist visit.” And I was, like, “That’s smart. I’ll do that.” Then I show up to the visit …
Lauren: They know you mean business!
Sylvie: At first, I didn’t show anything. I waited for him to tell me what I should do, and I listened very politely. And then I took out my slides at the end and I looked and I said, “Yes, it sounds right!”
Lauren: But doesn’t that go to show how, as a patient, it’s in our hands to do our own research and not necessarily accept everything that practitioners are telling us is the right pathway. You really have to do the research and decide for yourself what’s going to work for you. Which obviously you did.
Sylvie: Yeah, absolutely. And, you know, that made me, one, more comfortable with the treatment I had to do. But also, because of that research, I was able to ask questions. What I really was doing was trying to validate that that tree that I had built was right. So that made me really understand.
It took out the whole uncertainty and panic about treatment that every cancer patient goes through.
And my friend has told me that he has helped a few people do the same thing.
Lauren: He needs to start a business!
Sylvie: I have told him I should build an interface and do that for patients.
Lauren: It’s just amazing to me, as well, that you get diagnosed with breast cancer and you’re not given all of the materials that would lead you down this treatment tree, as you’ve described it. Which gave you structure. Because you knew how to research, but your average person doesn’t necessarily know what sources are trustworthy. And that you had to compile all that information for yourself and it wasn’t readily available to you, is pretty shocking for a disease that we know a lot about. And we talk about a lot, and is well-funded in a lot of ways.
Sylvie: It would have been practically impossible to go and do that. I went and looked afterwards, and I found that they actually have created a guide for patients — which no patient knows about.
Lauren: So we need some marketing money behind that, yep!
Sylvie: The doctors are not talking about it. But it’s still so confusing, and it doesn’t have the logic of the tool. So it’s kind of still too fuzzy to me. I don’t think that their patient guide is really useful. I can understand it now, but I think it would just be too confusing.
Lauren: Well, it’s interesting, too, because you would think that there would be a sensitivity to the fact that everyone thinks and processes information differently as well. A respective neurodiversity in that sense … like the way that you understand the structure or language of something is going to be very different from the way that I might. Some people are visual, some are more auditory.
Sylvie: The health system is really backward for those things.
Lauren: Well, we’re going to get into that for sure.
So can you talk us through what a typical day is like for you as you’re managing the day-to-day symptoms that your treatment is bringing up for you?
Sylvie: Sure. So as I mentioned, for several years, my day-to-day was just dealing with my illness.
I’ve tried to make some time to regain my life and rebuild my income.
So I wake up in the morning and something I do is, I meditate. No matter what, for 30 minutes. And then I have my breakfast. Then I write for a couple of hours. I’m actually writing a book.
Sylvie: Yes, I’m writing a book on my cancer journey. But not so much as a memoir … more to really help make cancer less opaque and invisible to caregivers, so that care can be improved.
Lauren: So it’s geared more toward caregivers and practitioners, in that sense, than to patients?
Sylvie: What I have found surprising … and didn’t help … is I think my blog is really heavily read by patients.
Emails that I’m getting from patients say that I’m able to put words to experiences that they couldn’t really articulate, and that’s very helpful to them.
So I think the audience would be both. So I’m working on my second draft now.
Lauren: So you write for a few hours then?
Sylvie: I write for a few hours and I answer some emails. And I always cook a nice lunch for myself. It’s pretty much my only meal. I have so many dietary restrictions that every time I go and eat at a restaurant or a friend’s house, I get sick.
Lauren: Is that a preventive measure? Or is it a result of treatments that you’ve undergone — that the dietary restrictions have become more clear to you as well?
Sylvie: It started really with my migraines. Although there are so many foods that trigger migraines that I took out of my plan. And then I’ve listened to your interview when you were sharing the same things … you get so much more attuned to what works for you and what doesn’t when you really pay attention. I’ve had a lot of GI issues related to treatment, so I’m learning what works and what doesn’t.
Lauren: Definitely. So you cook yourself good food that you know you can eat.
Sylvie: Yes. Then I work for a couple of hours. And then I take a walk every day, shorter or longer; walking is very important to me. And by 7pm, I’m dead, and I’m actually going to bed.
Lauren: It sounds like, in a way, this diagnosis and the way it’s changed your life has helped you find balance in your day-to-day. You’re doing a few hours of work, cooking some good food, going outside in nature and having a walk. These are things that people are encouraged to do every day, but when they work the 9 to 5 grind and various other things crop up in life, it’s very hard to access these pathways. It sounds like you’ve been able to do that.
Sylvie: Yes. I don’t know for how long. I’ve found a way to function and be able to be well, but I don’t have enough hours to work. So I’m going to have to change this balance. I’m trying to train myself slowly by slowly, to get there.
Lauren: So you mentioned how you It took a while to get doctors to believe you. Can you recall any specific experiences where you were forced to justify the fact that you had something going on when people wouldn’t believe you, when doctors wouldn’t believe you?
Sylvie: Oh, yes, absolutely. I had some instances that
I’m writing about in my book that make me concerned that my cancer would actually not have been discovered if I hadn’t really insisted.
I had a biopsy where I was completely butchered.
And it was actually not successful, because they didn’t get to the area that they needed to go. So I was really butchered for no reason. I had terrible post-surgery bleeding. Just awful.
Lauren: I think for a lot of listeners tuning in, sometimes with these biopsies, it’s not necessarily a lump on the top of your breast. Sometimes these are very deep, and in order to actually get to these areas, as you’re saying, it’s not an easy task. And you need very skilled surgeons to be able to do that. And it sounds like, in that particular case, you had people doing it who didn’t do the job correctly. These can be so invasive, just to get a diagnosis. Which in and of itself is frightening enough. And then you wait days for the diagnosis, too, and the anxiety is very difficult to handle.
Sylvie: Yes. So if you can imagine, I had 20 of those, which is very rare actually, even according to doctors, to have gone through so much. It’s really, really traumatic. People can’t imagine how there is a cumulative effect. Every three months, I had a major biopsy, and so, I’m just traumatized. I have PTSD now.
Lauren: Of course you do. This is where there there may be a mental health aspect … we might have anxiety or depression before we even get diagnosed with these additional invisible and chronic illnesses. But often, the medical experience creates even more trauma, because there’s greater anxiety and greater sadness associated with the procedures involved in getting a diagnosis. Let alone the diagnosis itself … followed by treatments which can range in severity, right?
Sylvie: Yeah, absolutely. That’s why I’m writing my book.
And actually I shared the draft with a friend who is an oncologist and who was just, like, “Wow, I’m learning so much.”
Those things are really important to tell.
Lauren: It seems also that in your orbit among doctors and other cancer patients, perhaps the patient voice isn’t being given enough weight in the medical community. Would you agree?
Sylvie: I think it’s true for all illnesses. But for cancer, definitely. This is why I’m writing my blog and I’m writing this book, and being an advocate — I’m just discovering that cancer is really an illness that’s completely misunderstood at the human level. People can see, maybe, 20% of the suffering of the cancer patient, and there is 80% that’s really unseen. All the treatment and everything that is done is created by people that never had cancer. So they’re only observing that 20%, and creating treatment for that 20%, and have no idea of what cancer patients are going through. I’m thrilled that so much money is going for finding cures for cancer, but I think that putting money into improving the cancer experience today would make a huge difference.
Lauren: What does that look like for you, specifically, in terms of putting money into improving the cancer experience today? Would that be improving access, improving the quality of the hospitals or the practitioners’ bedside manner? What does that mean specifically to you?
Sylvie: I’ve described some of this in my paper. I think it’s really understanding the patient experience. Hospitals have departments that are focused on patient experience, but in my mind, they’re really paying lip service to what they are doing. I teach an innovation workshop, or I was teaching that before I got my cancer diagnosis. And one of the images that a participant gave, which was really wonderful, was … you know, you always say, put yourself into the shoes of someone else. But I think what hospitals and medical providers are doing … they’re great at putting themselves into the shoes of the patient to try to understand. But they’re not removing their shoes.
Lauren: Right. There’s still a barrier.
And so they have a completely distorted view of what the patient experience is.
So I think this would make a very big difference.
Lauren: And that sounds like that’s going to involve a greater understanding of empathy and compassion in the medical system, for doctors to really see patients more fully.
Sylvie: Yes, but you know, interestingly enough, everybody’s talking about doctors and nurses. And there are empathetic doctors and nurses. I went through many doctors that I fired, and now I have a stellar team of of oncologists. They are skilled and empathetic. It took a lot of work to find them. And strength to insist on changing doctors. But I find that the biggest problem is actually not from doctors. I think that training doctors to be empathetic is only solving a very small portion of the puzzle. The product is really on the administration side and the processes that they are creating.
Lauren: Is that a problem that’s caused by the health insurance industry?
Sylvie: No, I don’t believe so. It’s a very poor understanding of the patient experience, and processes that are ridiculous. I mean, you shouldn’t have to be on the phone for two hours as a cancer patient to just make your follow-up appointments every day.
Lauren: Absolutely. I could not agree more. And it’s not just cancer patients who have to do that. The fact that people who are already dealing with chronic illness have to spend so much time and energy making phone calls is the most frustrating thing. This is an issue not only with your healthcare providers, but also with perhaps the larger hospitals in which they operate. Whether it’s front desk or back of house who are faxing various reports and processing lab work, streamlining all of that for patients would make things a lot more approachable, it sounds like.
Sylvie: Yes, I think it’s really looking at what it’s like to do everything — to make a call, to check in, to get into the treatment area, to receive treatment, to leave the treatment area, to make a follow-up call, to be receiving treatments. The things that people say and do.
Redesigning the rooms … I wrote in my paper, the radiation room looked like a torture museum.
It’s kind of ridiculous.
Lauren: Which already puts you in a certain frame of mind as a patient.
Sylvie: Absolutely. I walked in and I thought, this looks like a morgue!
Lauren: Yes, there’s a lot of sterility associated with the design of a lot of these spaces. Of course, for hygienic purposes. But also, we need to be keeping in mind the fact that this has a knock-on effect mentally, for patients.
Sylvie: Yes, it’s not just hygienic. When you get radiation, you have to be put in a mold. And so they have all the molds lined up in the entry. What for? So that it’s easier access for them. You have to think differently.
Lauren: I think that’s very true. Design is a huge factor here, and understanding energy of an environment as well.
Lauren: So, we know that there are ways in which the health system isn’t working. Are there ways in which it has worked for you, or you’ve seen how it could be working better? ? You’re French; do you think if you’d been in France for this treatment, it would have been more, or less, difficult. Is there any part of the experience that was positive here?
Sylvie: Certainly if I were in France, I wouldn’t have any financial problems because it would be 100% covered. I think what I would say that is positive, is that after struggling and being a cancer patient for what must be five or six years now since I started to do all of those things, I know a lot of people now in the cancer center, and so I was able to really handpick a stellar team of doctors. Which many people are very envious of.
So when you have the right doctors, things can be a lot better.
Lauren: So here, you were able to have your choice of doctors. Which is good. But as you’ve mentioned, that also takes a lot of strength, and obviously research and a faith in your ability to discern what’s good and bad for you. You were able to do research in a way that you knew was accurate, right?
Sylvie: People think a lot about the technical research … how skilled the doctor is, and reputation and all of this. But I find that when you’re dealing with rare or invisible chronic illness or cancer, it’s more than bedside manners. But there is something that’s more intangible. I have a sense for knowing who are the good people I want in my life, and who are the people I don’t want. I’ve had some oncologists that were really good. But the way they were dismissive or treating me, it didn’t work. And it was very difficult to ask to change oncologists in the same hospital.
Lauren: It can be awkward!
Sylvie: It’s not just awkward. They say no, they refuse it. It’s just plain, “No.” It’s a lot easier to just go to a different hospital and take someone else. So, I had to struggle.
Lauren: So what about representation when it comes to cancer? We know this is a fairly well-funded disease across the board. But do you think that the way in which cancer is represented in the media is helpful? Or perhaps detrimental from a cancer patient perspective?
Sylvie: I can answer this question around two different angles. The first angle, which I think is very detrimental, is that the media and books painting this image of cancer or cancer patients … it’s either this heroic or catastrophic battle that has to be won or lost. And that puts a lot of pressure on cancer patients.
So you are a cancer patient and you’re not allowed to say, “I’m tired”; to look bad.
People are always, like, “Stay positive! Let’s go do this!” And then there are many people that have incurable cancer. How is this supposed to make them feel? They’re fighting just as hard as I am fighting. If they are dying, it’s not because they’re not fighting harder. So this whole thing around being a warrior and and heroes, is putting too much pressure on cancer patients. But also it’s focusing just on cancer being a diagnosis and an outcome. You’re dead or you’re alive.
Lauren: Nothing about the process.
Sylvie: Nothing about the process, and nothing about the long term side-effects. Cancer is a chronic illness.
Lauren: That’s what I was just going to ask you, because you mentioned changing our perspective — patients and caregivers and practitioners alike — on what cancer is. And it sounds like what you’re getting at is that cancer is a chronic illness, as you said, rather than an illness you beat the one time. You’re going to spend the rest of your life making sure you don’t get it again, or managing the symptoms day-to-day.
Sylvie: Yes, absolutely. And I didn’t get that impression when I got my cancer diagnosis and treatment. It was basically, “Okay, so you’re going to do that and you’re going to be fine.” “Okay, this is your last treatment, goodbye!” And then, just everything breaks.
Lauren: And it sounds like there needs to be that kind of support in terms of representation, but also in terms of what’s available through the healthcare system or through various foundations that have been built to support cancer patients. But there has to be that kind of network where people can commune over the fact that there is a process at play here, rather than, as you say, the diagnosis, the treatment, the end. There’s so much more beyond that in what’s the life of a cancer patient after all of this.
Sylvie: Yes, and to give full credit, there are programs on supportive care that are starting, and I’m lucky enough to have access to that here. But still it’s done mainly outside of the hospital.
Lauren: And wouldn’t it be great if it were integrated in your care plan?
As a cancer patient, all your friends and family assume that you’re fine. Because your hair’s grown back.
Medical people are assuming that you’re fine. So yes, you may have some supportive care program … that not everybody has access to, by the way … I’m very lucky; I speak to so many people who don’t have access to that. But it’s not really part of your whole medical progression. As a cancer patient, you’re really not aware that you’re going to be spending the rest of your life having so many problems, so many surgeries just to manage the side-effects and all of these things. It’s really difficult. You need emotional support.
Lauren: I was going to say, it sounds like more than anything there needs to be immediate mental health care, and support groups or networks where you can share with others who are going through what you’re going through — more about the process rather than about the before and after, more about the reality of now.
Sylvie: Yes, the reality. Because it’s really impossible to to talk to anyone who doesn’t have cancer and have your experience be understood. And so, cancer patients, on top of all the medical problems, are suffering from emotional devastation and emotional isolation as a result of not being able to have conversations. It’s very different from being lonely; you may have friends and family but if you can’t talk to them about your suffering, you’re separated.
Lauren: Do you think that’s because … we hear The Big C. Cancer is a big word; it carries a lot of weight with it. Do you think it’s because people who don’t have cancer, they hear that word and they think, this is a big thing. We’ve got to handle you with kid gloves. We have to be gentle with you. We can’t talk about it unless they say it. Do you think people are too careful as well, who are outside that sphere?
Sylvie: Yeah, there are a few reasons. Some people are just too scared and uncomfortable because it reminds them of their own mortality — and they disappear.
So as a cancer patient, you lose a lot of your friends with a cancer diagnosis.
Some people stay, to their credit — but they’re very uncomfortable, like you’re describing. So conversations with a cancer patient are just very difficult, both for the cancer patient and the other person. I’m actually working on a short video with a doctor on this; I will let you know when it’s out.
Lauren: Yeah, please.
Sylvie: It’s very, very difficult and people are often very defensive when you tell them that they didn’t say something, or they said something that hurt you. So there is really no way to really bridge the gap. I’m finding a way to bridge it through my blog, which I think is why people are so interested in what I’m writing.
Lauren: Do you think that’s also because … in a way, when communicating with those around you who don’t have cancer, so don’t understand it from the patient perspective … do you think that sometimes sharing an article, instead of saying, “This is how I feel” … sharing an article from a third party makes it easier from an ego perspective for the person receiving that article to take that information on? Rather than it being a personal attack? Or, “This is what I need from you,” or whatever?
Sylvie: Absolutely. I wrote a post that was How to Comfort a Cancer Patient. And cancer patients were all, like, “Oh, I’m going to send that to my brother, my this and that, my uncle!” And were all excited. Because as you said, it’s all the things I wanted to say but it’s easier to hear that from someone else.
Lauren: And as a cancer patient, it seems to me that there’s such a huge excision of ego. You get a cancer diagnosis, and you are almost at once at the will of the medical system. You have to fight to survive on a certain level. But from the perspective of those around you, their egos still exist. And in order for us all to commune more effectively, we need to remove ego from all of those conversations. Which is why the third party information is a way to bridge that gap, as you say.
Sylvie: Yes, that’s a very interesting thing to say.
I could have a whole hour discussion on ego!
Lauren: Well, you’re a meditator so you know how to separate from it! It’s very interesting because it comes up in these conversations.
Sylvie: One thing that you mentioned, losing the ego … there is something very strange that I’m trying to articulate in my book … about going through cancer treatments and basically getting cells killed on your body while you’re alive. That was really disorienting, and made me and many people completely lose our sense of identity.
Lauren: That’s very well articulated. I don’t think you’re struggling to articulate it at all. I think that makes a lot of sense. Because it’s the difference between immunotherapy which is targeted cell therapy, and something like chemo or radiation which literally is built to kill everything in its path. That the treatments that we’re using for cancer quite commonly are ones that create a lot more damage on the way to removing what the offender is.
Sylvie: Absolutely, and there is definitely the physical damage to areas where the treatment was given. But also the emotional damage. In my entire life, I just never had been … I was waking up, I looked like a middle-aged woman, but I feel like a five-year-old. I don’t know what I want to do with my life.
Just all those values and the sense of who I was and what I wanted to do … it was gone.
Lauren: Do you think that’s because of the way that we understand cancer? The big picture, when someone says The Big C? Or, do you think that’s also just the way in which cancer patients are treated?
Sylvie: Definitely the treatments. I mean, for me, it was just day and night, from starting to get the treatment to finishing the treatment.
Lauren: It’s aggressive.
Sylvie: I was just … okay, I was not Sylvie anymore. The old self doesn’t exist anymore.
Everybody is expecting the old self to come back. They want back the old Sylvie.
Lauren: So you’ve got to go through that transformation and grieving process, but they’re going to need to do it as well.
Sylvie: Yes, but for that, I need to get to a point where I know who I am. Otherwise, we can’t communicate.
Lauren: And that’s a whole other process in and of itself. It’s just fascinating to me, because it opens up such worlds of discussion about selfhood, about identity. And so much of what we talk about in this world of chronic illness is exactly that. At what point do I take on the identity of someone living with a disability? Is this all of who I am? Or is it a part of who I am? And for those of us who have made this our work, it’s an even bigger part of who we are — because it’s what we’re talking about or writing about every day.
Sylvie: Yes! Like you, if I’m not at the cancer center, I’m writing about cancer. Starting a business around cancer. My whole life is cancer!
Lauren: And when I’m not doing the podcast, I’m at the doctor’s office. We live in these worlds. But I totally agree with you. It changes fundamentally who you are, to live with a chronic illness. But I imagine that going through something where the treatment, as you say, is so often more aggressive … that’s got to be even more damaging and heartbreaking to go through. So how do you manage it? How are you still here? Are you still figuring out who Sylvie is?
Sylvie: Yes, I’m starting to get a good idea. I attended eight weeks of survivorship program, and I’m starting another one in a couple of weeks. I’ve done a lot of meditation, reading and walks.
I’m actually at a point where I’m finding this new Sylvie, which is actually really exciting.
I attended a workshop, a writing group for cancer patients while I was going through treatments. And that really changed my life. Because I have always been a writer. I’ve been a blogger for 10 years. I used to write for the Huffington Post. I love to write, and I write well.
Lauren: And it’s familiar territory.
Sylvie: Yes. But when I went into that class, a completely different voice came out of me. It was, like, I was writing and I was reading it and was, like, where’s this coming from? A kind of new identity was just coming out on paper, and a lot more vulnerable. A lot more heartbroken, a lot more human, compassionate and empathic. Sad. Despair. And awe.
Lauren: That’s the thing … the sadness comes with awe! There’s always that dichotomy.
Sylvie: Yes, yes. And that’s the voice that came out on paper, and that’s why people encourage me to write my blog, and start a new blog that was more around my cancer experience.
And now writing a book that’s a lot more vulnerable than I ever thought I would write in my life.
Lauren: And it’s interesting because when others go through this kind of transformation, when your average person who’s not living with chronic illness seeks transformation on that level … some may isolate, some may seek support groups, and go through various holistic healing methods. But for cancer patients, it seems like it’s that the metaphor of the butterfly … this caterpillar becomes a chrysalis, reborn a butterfly … and yet in your cocoon, it’s not just you and it’s not safe. There’s all of this treatment, all this aggressiveness, all these people who are coming in and out, and it’s not as personal in that way. So it’s harder to figure out what that butterfly is going to be on its way out.
Sylvie: Yes, it’s a struggle that takes years. And through my mindfulness meditation practice … and also I do a lot of very real things … I also attended death meditation retreats to really face my mortality. So that has prompted a lot of reflection, and I’m coming out a lot wiser.
Lauren: Yeah, I think that voice that’s vulnerable and sad and scared, but also in awe, that is the voice of wisdom in many ways, isn’t it. Which also comes from experience.
Sylvie: That’s nicely said!
Lauren: I’m just here reflecting you. I’m just acting as a mirror!
Sylvie: Lauren, we’re on the same wave length!
Lauren: I know! But it’s just so wonderful to get this perspective, because I think there’s a poetry to the way that you describe what you’re experiencing. And you’re painting the picture for others in a way they’re obviously responding to, because it’s visceral, it’s vulnerable. And it’s real. And I think that kind of reality is hard to find in this social media post-truth world, right? But it’s also that being that raw about things, that’s really tough to work through personally as well as to offer it up to others. And I think it’s not just cancer patients who are lucky to have your writing, it’s all of us. That we can reflect on the experiences that you’re sharing with us, and understand transformation and chronic illness in a whole new light — which obviously needs to happen. If we’ve learned anything from this discussion, it’s that things needs to change for everyone. And that the patient needs to be the one at the head of that charge.
Sylvie: Yes. The reason being, the understanding of the cancer, or another illness; experience cannot come from someone who never had that illness.
Lauren: Absolutely. Well, I like to end my interviews with a couple of Top Three Lists, which seems so overly simplified now after this very philosophical discussion! But I wonder if there’s a way for you to boil down for people who are tuning in? Maybe we’ve gotten too heavy for them, maybe we haven’t. But I’m wondering if there’s a way to boil down, from all of this wealth of information, your Top Three Tips for someone who suspects something is off. Who is like you were, and thinks, I’m quite sure that there’s something going on. I may not know what it is, but I have to find out. Or perhaps someone who’s already got that diagnosis and has begun undergoing treatment. What would you recommend for these people? It’s a tall order, I know!
Sylvie: I think the first one for me would be to learn to fight for yourself, and if you really can’t, find someone to fight for you. Because you’re going to be overrun. I could have not had the diagnosis if I didn’t insist. I know people that were prescribed treatments that were really overly aggressive and there were newer, much better treatments that were available. But the doctor didn’t prescribe them. So it’s very important to fight for yourself.
The second thing which I think you can relate to, or you may have mentioned yourself in your story, is really asking for what you need. Because people have no idea.
Lauren: So true.
Sylvie: Right? And we’re not raised like that, so it’s really cancer that taught me that if I’m just sitting here and waiting, it’s not going to come.
Lauren: It’s amazing because talking to you now, I can’t imagine you not asking for what you want, and not telling people what you want. But it’s part of that transformation, isn’t it. I’m meeting the New Sylvie! That’s a very important message for everyone listening, but especially for any marginalized person who’s listening. Be that women or anyone else in this grand sphere who’s not a rich, white man, right? Asking for what you want and need is not only okay, but it’s necessary.
Sylvie: It’s necessary to survive.
Lauren: And not just when it comes to chronic illness, but in your whole life. It’s a life lesson.
Sylvie: Yeah, it has expanded in other areas of my life. Certainly when I look at my illness, I could not have made it if I had just been the Old Sylvie, just politely waiting for help to come and people to offer “the right thing”. That would not have worked. And then the third thing is: Don’t let others make you believe that you’re not sick.
Lauren: So true. It’s that classic trope of being told it’s all in your head. Which is largely not true! 99.99% of the time, not true!
Sylvie: Constantly … “You look great!” People that look at you up and down. I was seeing a friend and she said, “You look great!” And I was just at a difficult moment. I was happy to see her, so I was smiling.
But I told her, “I’m not feeling great, I’m really not feeling good.” She looks at me closely. And then she says, “But your eyes look great. Eyes don’t lie.”
Lauren: Oh! That’s a bit presumptuous!
Sylvie: Totally! I don’t even have the right to say that I’m not feeling great? That was devastating to me.
Lauren: Well, that’s a real indication that she can’t handle what you’re going through, isn’t it. That she couldn’t take it on.
Sylvie: Yes. It’s this expectation that cancer patients have to be constantly warriors.
Lauren: Yeah, I think that’s a really fair point. That’s not accurate. I mean, look … for someone who relates to military references, I’m sure the idea of going to battle makes a lot of sense. But for the rest of us, it’s not just one event, is it. It’s like constant diplomacy. It’s more like the political side of things and getting a bill passed than it is about going to war.
Sylvie: Absolutely. Yes, there is a part during treatment, when you have to be a fighter. You have to wake up and go to treatment every day.
But in a lifetime of being a cancer patient, you can’t be a fighter all the time.
I used to be a professional ballerina a long time ago. And so I know all about working hard, going beyond the limits.
Lauren: No wonder you’re so in touch with your body as well.
Sylvie: Yeah, and pushing your body to do more than what you thought it could do. This has actually served me in my life, certainly, but it has also been a burden. Because yes, there is a part that you have to fight and not die. But if you want to heal, you cannot heal by fighting. Healing comes from letting go.
Lauren: Oh my gosh. So well said!
Sylvie: Okay, we stop here! (laughs)
Lauren: Well, I do have one more question. I think you’ll have fun with this one. The last Top Three List is: top three things that give you unbridled joy, that you are unwilling to compromise on. They might be guilty pleasures, secret indulgences, comfort activities. What are the top three things in your life that you turn to when you need a little light in your life?
Sylvie: Walking in nature, and the company of oak trees.
Lauren: Oh, lovely. You’re like Judi Dench; she loves her trees!
Sylvie: I just love oak trees. I can totally identify with them. I wrote a poem on oak trees. I’ve never been a poet, but during my cancer journey, this poem came.
Lauren: I’d say you have a poetic soul, for sure!
Sylvie: Thank you! It’s not published in a literary review, but it just started from my friendship with the oak tree. They’re my comfort symbols.
It’s hard to believe that meditation can give you unbridled joy. But it does for me!
Lauren: Well, it’s part of that letting go. That’s part of healing, isn’t it.
Sylvie: Yes. I discovered through meditation that I can be going through hell, but I can have peace in any moment.
Lauren: That’s beautiful. I love that.
Sylvie: That is very important.
Lauren: That’s so much more than … “It gets better.” It’s so much deeper!
Sylvie: And then I really love having a good lunch with a good friend, and to laugh.
Lauren: There’s nothing like it. This feels like we’ve had a good lunch! I’ve been drinking my lunch while we’ve been chatting! It feels like we fit the bill there today.
Sylvie: It feels like we’ve been talking in a cafe.
Lauren: I was thinking that! The only thing missing is a glass of biodynamic wine or something to complete the picture! Well, Sylvie, is there anything else you’d like to add? I’d love for you to tell listeners where they can find you and your work, of course.
Sylvie: Yes, absolutely. My website and my blog are my first and last name SylvieLeotin.com. I’m on social media on Facebook, LinkedIn, Twitter … a little bit of Instagram, but not my favorite.
Lauren: Yeah, I feel like I see you mostly on Twitter.
Sylvie: Twitter is a wonderful place for cancer patients.
Lauren: That’s very good advice there.
Sylvie: Yes, I’ve tried them all.
Lauren: Very good. Well Sylvie, this has been such a delight. I’m so glad to have had the time to speak with you and commune over cancer. And I wish you continued healing, and really look forward to seeing what work New Sylvie continues to give birth to in this world, and look forward to reading more of what you have to offer us.
Sylvie: Thank you so much, Lauren. It’s such a pleasure to speak with you. You were just born to do what you’re doing.
Lauren: Well, I think we both were!
Sylvie: We found our way and we met each other.
Lauren: I know. There you go. It’s beautiful. Thank you so much, Sylvie!