Season 2 Episode 005: Join me at the mic with Ellie Waters. She is a medical student and an advocate for AYA, Teen Cancer, and childhood cancer. Her main focus is to inform not only cancer patients but also caregivers and doctors about the mental health aspects surrounding the diagnosis of cancer. She was diagnosed with Stage IV Alveolar Rhabdomyosarcoma nearly five years ago (as of July 2020). Transcripts are published for those that are hard of hearing.
For Show Notes Links and More:
www.livingwithscanxiety.org/shownotes
Support the show
Narrator (00:00):
Welcome to living with scanxiety, the cancer podcast, a podcast geared to help you navigate the pediatric cancer world as a mother of a child who battled a soft tissue sarcoma for over a year, your host Rosaria Kozar understands and will help guide you through your journey. She brings the knowledge of experts, families, survivors, and other organizations tied to the pediatric cancer world to your doorstep. Her mission is to inform, support, and promote hope for you and your family.
Rosaria Kozar (01:26):
Hi, this is Rosaria. And today I have with me Ellie Waters, and we're going to be talking about some psychological factors that she didn't really know about until after she became the survivor that she is today. She had Aveolar Rhabdomyosarcoma, and she was successfully treated and is now going to become a doctor herself. She was accepted into every single school that she applied to. She's been featured on BBC and other local news networks. She has her own YouTube channel. I can't say enough about her. When you talk about a advocate, Ellie waters should come right up. So welcome to the show.
Ellie Waters (02:11):
Thank you I am very excited to be here.
Rosaria Kozar (02:14):
Well, the pleasure is all mine. So let's jump right in. You were at a conference and spoke about psychological factors. Do you want to get more into that?
Ellie Waters (02:26):
So, I was asked to speak at a conference about the psychological impact of cancer treatments specifically on teenagers. And it was something I felt passionate about because while I was going through treatment, no one ever warned me about the psychological impact that it would have on me, because I didn't, I wasn't really aware of mental illness. I suffered in silence for a long time. When I was diagnosed, after I was diagnosed, I developed anxiety. So it'll keep me awake at night, constantly crying, I'll get panic attacks, but you know, I never mentioned this to my doctors because my doctors were very physical symptoms focused. So, you know, I just saw it as something I had to deal with myself. I had to learn to cope with it, you know, and it was really hard. And I, I think, you know, for a lot of teenagers that I talk to the psychological impact is actually worse after treatment. So I think it's also making people aware of that because when the treatment finishes cancer, doesn't just end, you know, you're left with like a myriad of longterm side effects and then you've got the psychological impacts on top of that. So I wanted to bring awareness to the kind of medical community at this conference about the psychological impacts, giving my own personal experience. Then also being a voice for other teenagers that I know of who've had similar experiences so that we can kind of tailor their clinical practice to including the psychological impacts.
Ellie Waters (03:51):
So it was really useful. We got really good response. I even had an oncologist come up to me afterwards and say that she's going to implement some of the things I said in my conference, in her own clinical practice. So that's like a really exciting step forward to raise a bit more awareness of the psychological impacts for cancer treatment.
Rosaria Kozar (04:10):
Wow. I mean, that is a really key point because you do see, or at least as a caregiver, I did see a lot of children suffering on that aspect as well. What would be the top three things that you noticed that happened after treatment that affected you the most? Because you said during treatment, you were going through anxiety. What were the top three and how did you overcome them and did your parents help you, and if not, this is a long question, what could they have done?
Ellie Waters (04:42):
Okay, so I think the hardest thing for me was integrating back into normal life because I felt so different. I was not the same Ellie. I was, everyone knew me as a cancer kid. So it made going back into school really difficult because people didn't treat me the same way. People were almost scared to talk to me. So I found that really hard, the way that I sort of overcame that was I made people comfortable with me by constantly initiating conversations with them, to make them feel comfortable with me. And that, you know, I'm not just cancer. I had to have other things to say. So I think that helps because a lot of people are scared that they're going to say the wrong things. So if I didn't talk to anybody, it would have made me feel really depressed. So to kind of spin that around and try and get people to talk to me and integrate back into my class, I just kept talking to people and triedto be as normal as possible. I suppose it was really difficult for me because I could no longer relate to my peers. I felt like a complete outsider because I just had different priorities, different life experiences to them. So I couldn't talk about the newest lipstick or you know, which boy I liked because that wasn't on my radar at all. I was focused on myself and my health. So, you know, it was really difficult. I didn't feel like a normal teenager.
Rosaria Kozar (06:04):
Oh my gosh, that sounds so difficult. Did your parents end up helping you with that?
Ellie Waters (06:11):
Um, so, you know, they didn't help us such as like giving me practical advice. I was very much, you know, I kind of relied on myself for that. However, you know, if I did have trouble at school, cause I did repeat the school year. So I was actually thrown into a completely new school year with new people. So they did help me. If I was feeling down one day, I could talk to them and like talk it out. And mum was always a really good support when stuff like that happened.
Rosaria Kozar (06:34):
Oh, I'm sorry, you experienced all that. And reintegration into the community is also difficult as a caregiver because your child is given so many things for me in Boston, it was Red Sox tickets, visits with famous people, etc... It's aken away and that's a good thing, but it's a total transition back to another new normal as it seems like that's what you went through.
Ellie Waters (07:03):
Yeah. It was really difficult. You know, like going back to school, I was on a part time schedule and people would say, Oh, you're so lucky that you don't have to go back to school all the time. And when I went to my wish, I got, you're so lucky that you went to New York and you know, I, you know, I am very lucky that I did get those opportunities, but because of cancer, but I'm not lucky as a whole because I did get cancer. So people are very narrow minded, which irritated me a lot.
Rosaria Kozar (07:30):
That's awful, that is a common theme that, "Oh, you're so lucky", but they forget the part that you're sick. I've had that happen on the opposite end. So it seems like your parents weren't extremely involved in your mental health at that time. If they could have helped more, how could they have helped?
Ellie Waters (07:50):
Um, I think the biggest thing I actually spoke about the conference is not having them in consultations. So I think because mum was so obsessive and protective, of course, during my treatment, she was always in every single consultation with me and I didn't want to upset her by telling her to go. But you know, the reason my mental health kind of didn't really get picked up for so long is because she was there so I was protecting her. Cause I didn't want to say my true thoughts and how negative my thoughts were in my mind in front of her. So I didn't want to put extra stress on her. So I think that's the biggest thing. If the conversation steers to mental illness and I think really the doctors should take the parents out of the room because I found it so much easier to open up when my parents were out of the room, because I didn't have to protect them. I could just say how I've been feeling.
Rosaria Kozar (08:42):
That's a pretty common theme. I keep saying that, but a lot of children want to protect their parents.It is very difficult for them to take a step back. But at times you have to let it go. I'm not ready for that because my son is three. I can't let him go just yet.
Ellie Waters (08:57):
Yeah, that's what my mom was. Like I said, my mom was like, Oh, you can tell me anything. But in my head I couldn't tell her anything not because I didn't trust her it's because I wanted to protects her. And because I have a twin sister and she, you know, her mental health was really negatively impacted by my diagnosis. So almost my mom's got enough on her plate having to deal with her mental health. You know, she doesn't have to have mine on top of it. So I tried to put a brave face and because everyone was complimenting me saying, I'm so strong, I'm so brave. I almost felt the pressure to live up to a sort of expectation. So I kind of suppressed my negative thoughts and my mental health because I thought, you know, I have to appear strong, brave, courageous. I can beat cancer. But inside I was, you know, I had a turmoil of emotions going on and anxiety. It was left suppressed and kind of spiraled into this bigger thing. Um, and so I eventually sought counseling to help.
Rosaria Kozar (09:55):
Oh, that's good that you reached out and I must've been so tough to feel alone. I'm so sorry. You went through that. That's not easy. You definitely did pick yourself up and you are a true advocate for the community now. And one of the things you advocate for are the side effects. And one major side effect you focus on is...
Ellie Waters (10:21):
The menopause!
Rosaria Kozar (10:21):
And just, you know, Ellie is how old now?
Ellie Waters (10:23):
I'm 19.
Rosaria Kozar (10:26):
So when we're talking about this, she is 19 years old and she is four years out from treatment?
Ellie Waters (10:32):
Five years in September, well, three years out of treatment and then five years since diagnosis in September.
Rosaria Kozar (10:38):
Okay. So tell us about this, this huge topic that you advocate.
Ellie Waters (10:42):
Okay. So, you know, not the majority, but a lot of young girls who go through cancer treatment, it can affect your ovaries. That happens to me because not only do I have the chemotherapy, but I have pelvic radiotherapy as well. So when I came up with treatment, I had all these menopausal symptoms, like hot flashes and night sweats, achiness, fatigue. And then I kind of went on to HRT, which was like estrogen and progesterone, which helped for a bit that then my menopausal symptoms came back because there's not enough emphasis on the after care for cancer treatment. It wasn't a priority. So I'll just put on waiting list off the waiting list and have to wait some months to see a menopause specialist. And in this time, you know, my mental health had been really good, but during the time where I had to wait for an endocrinologist, which is a hormone doctor, my mental health, went downhill, because you know, at the time I was at 15, 16, all the girls in my year where I'm getting more curvy, they were developing properly. They started talking about boys getting into relationships. And meanwhile, I was feeling like a complete outsider because I did not experience anythings or anything like they have because I was too busy dealing with the menopausal symptoms. And I really did suffer in silence because in a way I felt, because I was so lucky to survive cancer, I felt too guilty to talk about my kind of side effects with the menopause. So I felt like I was overreacting. I should just be super grateful that I'm alive, which I am, but you know, but the symptoms were getting to me a lot and they were progressively getting worse as I was just waiting on the endocrinologist appointments and there was no sense of urgency or priority with it. So it made me feel like I was overreacting. And it's really important that young women are advised on the menopause because the menopause doesn't just mean that your periods stop. You know, you can get a load of a whole host of horrendous side effects that you can deal with. And not only that, it can affect your longterm health that can increase your risk of osteoporosis, cardiovascular disease dementia. So it creates quite a stark outlook and it's not, it's not great. So, you know, I advocate about the menopause because 'A', I don't want other teenagers to feel alone. Like I did. And 'B' just to spread awareness to the, I guess, cancer community that is really important that we do treat the menopause we give it its utmost respect that it deserves so that young women can be put on hormone replacement therapy and feel normal because I felt like a complete outsider.
Rosaria Kozar (13:18):
I can only imagine being the age you are going through that. And you said you had a sister, so you felt like you had to protect her as well.
Ellie Waters (13:25):
Oh yeah, definitely. I felt like I got to protect everyone almost so a sense of blame because I was diagnosed and I kind of caused some sort of eruption in the household and, you know, everyone was sad and stuff and all that. It was my fault really because I couldn't help her, but I did feel a sense of responsibility that I wanted to try and be as upbeat as I could around my siblings, especially just to make them feel better. So I hid a lot of my true feelings from people and that's why I did suffer in silence. So it's a psychological impact. So was protecting everybody around me.
Rosaria Kozar (14:01):
Do you think that there is something a caregiver or even a sibling could do to have kind of curbed that for you?
Ellie Waters (14:08):
I think maybe, maybe, um, cause I felt they protected me a lot, so we almost were doing it to each other and because of that, I didn't, they weren't really expressing their emotions and therefore I wasn't expressing my emotions to them because my twin sister, she wouldn't say, you know, the psychological impacts my diagnosis had on her. So almost I thought that everyone was okay. Whereas I was making a big deal of it. Whereas if we came together and talked about how we felt and were able to be honest with each other, that probably would have made me open up a bit more. Because if they felt comfortable talking about their issues, then I would have maybe felt more comfortable with talking about my issues and then work together on that. But we were all just protecting each other. So it kind of works against each other at times.
Rosaria Kozar (14:52):
So it seems like there was the lack of communication and you're a huge advocate for AYA, which is basically teens and a little bit older that get, or are diagnosed with cancer. So you, what is your main objective for them when you're raising awareness?
Ellie Waters (15:14):
My main objective for them is actually just to talk about the mental health side of things, because I find a lot with little kids, of course they don't really understand what's going on. So they are very resilient in the way that they can kind of brush it off and get on with things. Whereas for teenagers, we know exactly what's going on, we can understand everything. So it does weigh on our minds a lot more. So if the biggest thing I do preach to the teenagers that I've met with cancer is to just talk like don't bottle everything up. You know, you need to talk about these things because you are going through a very unique and difficult situation that your friends aren't particularly going to understand your family's not going to understand. So you do need to talk and kind of almost tell people how you want to be supportive, because I think we can suffer in silence because we feel, we don't know how to express our emotions or talk about these things. So I do try and advocate to talk as much as possible and to be mental health aware because I certainly wasn't, I didn't realize my panic attacks and me not sleeping at night was related to anxiety. I just, you know, I just got on with it cause I just school that was normal, but it's really not. So that's what I try and advocate and just to not suffer in silence. So that's why I particularly advocate the menopause because it's something that teenagers feel too embarrassed to talk about. So it is something that they can get a little worse and I try and encourage people and give people the confidence. So I open up those conversations with adopters, with their family members, because you know, you can survive cancer, but you may be left with all these horrible side effects. So you need to talk about them and get the best treatment possible to improve your quality of life.
Rosaria Kozar (16:55):
I applaud you on all the efforts that you do. You're so amazing. And when you talked about bottling it, do you ever run into any AYA survivors or fighters that have parents that bottle, or caregivers I should say it doesn't necessarily have to be a parent, that bottle it up afterwards. They don't want to talk about it they want to put it on the shelf. And if you do, how do those individuals come back to you and say it's hurting them?
Ellie Waters (17:25):
It's actually interesting that you say that because I just have a boy message today that I kind of kept in contact with. And he lives, in Korea. So he was actually saying how he's really struggling with the mental health side of things with PTSD, but he doesn't really want to talk to his doctors or family members about it. So I think particularly where he lives it is seen, as, you know, if you have mental health as a boy, then you are seen as weak, I don't know what other words for it are, but you know, you, he doesn't feel like he can open up about it because of the stigma around it. So what I said to him and actually, because of his bad mental health is affecting his sleep. So what I said to him is that ultimately you're the one who's got to deal with these problems, not everyone else. So you need to be your advocate and talk and say what your problems are to your doctors and your parents, because you need to get the support that you need because you shouldn't have to fight and survive cancer and then be left with all these horrible mental health implications afterwards. It's like the second battle that you don't have to do if you get the help. If you get the help, if you get the counseling, I've really suggested to him to get counseling. Cause that really, really helped me, you know, just taking ownership and being able to get the support that you need because you shouldn't have to suffer. You've already suffered enough. So if there's ways to that, it can be helped or treated, then go for it.
Rosaria Kozar (18:51):
Well, I hope you helped him and I hope he makes positive decision for himself. So for the sake of time I have to wrap up, I just wanted to say, is there any last minute information that you want to share with someone out there?
Ellie Waters (19:07):
I would just say, I think cancer doesn't end when treatment finishes. I said before, so it's really important that you not only take of you take care of yourself during treatment, but take care of yourself afterwards. I think it's easy to neglect your health after cancer treatment and thing that you'll find now and just get on with normal life. But you do really need to prioritize yourself. And if you are having struggles with your mental health things like PTSD, then do get it sorted because ultimately you're the one who's going to have to live in this body for the rest of your life. So you need to take care of it the best way that you can. And this has treatment and support out there and go for it.
Rosaria Kozar (19:41):
Definitely. And just so you know, Ellie has a YouTube channel. She is on basically every type of social media. I don't know. Are you on TikToc yet?
Ellie Waters (19:53):
Not and I am not on Twitter either. I couldnever get the hang of it.
Rosaria Kozar (19:55):
Oh, okay. So she's on Instagram. Facebook, I'll have all the links up on my website, www.livingonscanxiety.org/shownotes. So check it out there and you can get links to everything. Thank you so much for joining me today. I really appreciate it.
Ellie Waters (20:15):
Thank you for having me,
Narrator (20:16):
You for tuning into Living with Scanxiety, please subscribe to hear more informative discussions like today's. Music is courtesy of Ryan Hamner.