Question the expert

Emily talked about the importance of listening to your body and not being afraid to question your doctor when his or her guidance is contrary to what you believe is the right answer for you. She also shared what it was like to deal with an unexpected disability after surgery.

You can find Emily @wonkyarm on Instagram and at her blog. 

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Email info@talkaboutcancerpodcast.com or come say hi on Instagram, Facebook, Twitter, or Linkedin!

Thank you for listening!

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My reflections on the conversation:

You probably heard me talk more during this episode than most others because I was feeling pretty frustrated by the experiences Emily had to go through with her doctor. I know she was being very diplomatic about not discounting his professional abilities completely, but to not have changed his ways given what happened the first time tells me that he did not take ownership of the situation. This honestly is a sign that he is not very focused on improving patient care and it’s so dangerous for patients who are medical outliers like Emily is. 

I also want to thank Emily for highlighting the experience of living with a disability after cancer. In addition to feeling isolated from her peers (because cancer can be rather foreign to people in that age range), she had to navigate an extra layer of complexity when it came to school, sexual intimacy, and work. Just thinking about how nerve-racking interviews still are for me today, I can only imagine how hard it was for Emily to have had to not only manage her own insecurities but also quickly learn to direct conversations with strangers in a way that didn’t reduce her to just cancer and the disability. 

I hope Emily is super proud of what she has accomplished given all the barriers she has had to overcome and continues to share her experiences through her creative writing because there is so much strength in her words and it will be an inspiration to others who are dealing with similar challenges. 

Transcript

SPEAKER_01: 0:03

Hey everybody, welcome to episode 23 of the Talk About Cancer Podcast. This is your host, Serena. I'm looking for more caregivers, family members, friends, and other co-survivors to come on the show to share your stories. Please contact me by going to TalkAboutCancerPodcast.com if you're interested, or feel free to point others my way if you feel they have an important message for the cancer community. In this episode, Emily talked about the importance of listening to your body and not being afraid to question your doctor when his or her guidance is contrary to what you believe is the right answer for you. She also shared what it was like to have to deal with an unexpected disability after her surgery. Let's dive into her story now, and I will check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.

SPEAKER_00: 1:07

Well, thank you for having me. I'm really excited to chat with you. Um, my name is Emily. I'm 28 and I live in London, Ontario, which is the boring London of the world. Um I've had oo wing sarcoma twice now. The first time was when I was 20 years old, and the second time was uh when I was 27 years old, so just last year in 2020. Um, I've only just finished my treatment a few months back, and now I'm in that process of just waiting for the next scan to make sure nothing's growing back. Um, so yeah, that's just the cliff notes version of who I am and what I've been through.

SPEAKER_01: 1:53

Yeah, that waiting time, the the scanxiety. When do you get your results?

SPEAKER_00: 1:59

Um, so um at the end of Jan or July. The end of July is when they'll do the scan, and they'll likely tell me within a few days of that. Um, this time around, when they did the surgery to remove the tumor, they didn't clear the margins. Um, so it's been a different experience for me that way. So I had to do some more treatment, which was radiation. And uh now we're just we're gonna have to wait a few months and see if there's any growth. So yeah, it's definitely it's scary and it's difficult, but I'm trying to take the approach this time of not constantly worrying about it and just dealing with it when it when it comes.

SPEAKER_01: 2:41

Do you think you get wiser about dealing with the anxiety the second time around?

SPEAKER_00: 2:48

Yeah, I definitely think this time around I had a completely different perspective going into it. Um, a lot of things were different, but a lot of things were the same. So I was just a bit more prepared. But I I think I had learned a lot about the anxiety behind it, how that can be detrimental to your own mental health and your physical health. Uh, for me, I don't know if it's, I mean, it is the same for a lot of people, but I don't know if it's the same for you. But anxiety affects me very physically. So I've been trying to just deal with things as they come. I mean, I I'm terrified. Like I'm not gonna sit here and say I'm not scared, but I'm trying to not focus on it every day. I have a few months in between where I don't have to think about cancer on a regular day, go to treatment every day or things like that. So I'm trying to just enjoy that time. Um yeah.

SPEAKER_01: 3:47

If you don't mind actually just sharing a little bit about what UN sarcoma is, I think just as a name, it's not like breast cancer or brain cancer, where I think most people can understand what that is, but UN sarcoma as a name, it doesn't tell you what kind of cancer it is. Yeah.

SPEAKER_00: 4:07

Um, Uing sarcoma is one of the more rare sarcomas that you can get. If you look up statistics or things like that, uh, it's most often found in children or younger people. It's a tumor that typically starts in the bone, but it will extend to soft tissue, and that's what's happened to me both times. Um, the first time I had ooing sarcoma, it was undiagnosed for a year, and I was having just pain in my shoulder, limitations in my right shoulder, and that started to increase. It didn't feel like a muscle pain. It was very deep and achy, and um, it ended up extending outside, like breaking out of the bone and starting to wrap around my humerus, um, and you know, getting into the tissues and the muscles there. And the second time that I had uh the tumor, it it didn't metastasize, which was was odd for my team to notice. It was seven years later, which again was quite rare. I was past the point of if it was going to come back, it would have already come back. But it began in my fourth rib and extended into my lung, and it made it all the way to my heart sack before we caught it. It doesn't sound lucky, but it was very lucky that we caught it before it had reached my heart, because there was not much that would have been able to be done if that was the case.

SPEAKER_01: 5:35

So it's a very rare form of cancer, as you said, for children and young people.

SPEAKER_00: 5:42

Yeah, and even, I mean, the first time that I was diagnosed, I was 20. And even then, I was a bit kind of out of the typical age range for that. It's interesting, even in just different groups that I've been a part of or people that I've met, I like I haven't met many other people that have had ooing sarcoma. Um, I've heard secondhand that, oh, my my friend's daughter has had it, but I've never personally met anybody. And even when they when they tried to diagnose me the first time, they had thought it was osteosarcoma because that's more common, but yeah, it was ooing sarcoma.

SPEAKER_01: 6:23

Being the outlier both times, how did that impact your diagnosis and treatment?

SPEAKER_00: 6:31

I guess I'll speak to it as compared to some other people that I've met. My chemo process was extremely different than theirs. Most people that I've met go into chemo for a day or for a couple of hours, and then they get some weeks off, and they go back in and they do a couple more hours until their kind of treatment is done, or however it's planned out for them that way. But I had to go in and be checked into the hospital for five days straight, receiving chemo pretty much like constantly. I would get an hour unhooked from the IV and then I'd go outside and sit and enjoy myself. But um, it's very hard sometimes to compare my journey to other people or have other people understand some of the treatment aspect of it because it's been very different from other people that I've met.

SPEAKER_01: 7:26

How might have been a medical outlier made the process more difficult for you?

SPEAKER_00: 7:35

Yeah. Um I mean, I do want to start out by saying I don't want to bash my doctor or put out the impression that he's not good at what he does. I think it was just I think many people fall into this category of being misdiagnosed or being put into a box of symptoms and easy diagnosis, what's the most common thing that this could be? And I experienced that twice. Uh obviously, the second time, it was definitely more upsetting and disappointing because we had already been through this, that for it to happen to me again, building that trust up with my doctor and for this to happen again was very frustrating. Just to backtrack a bit, the first time that I was diagnosed, I went through a year of visiting my doctor quite regularly, um, complaining about pain in my right arm. And initially he thought I might have just injured something and needed to go through physio. Then he thought maybe it was frozen shoulder, and again, physio and pills were prescribed. It wasn't until I was going to an emergency room in extreme pain, a year after complaining about this, a year after going through the motions of physio and trying different things that I was finally diagnosed with ooing sarcoma. And it was just, it was really frustrating because my family doctor, he works with my uncle, he now works with my cousin. I've been to weddings with him, I know him quite well. So I did put a lot of trust in him and what he was saying back. I didn't know well enough back then to question or to second guess what someone was telling me, even though there were times where I had explained to him, you know, I was very active. I was a runner, I played Taekwondo, or I did taekwondo and I played rugby. My whole life I was very active and I knew what muscle pain was. I remember at certain points describing to him that it feels deep in my bone. So I don't know why that wasn't investigated a bit more. I I think it sometimes comes down to being a young female, and you're often just not listened to or assumed that you can't handle or understand pain. The second time I was diagnosed was a bit different. At this point, my doctor would take me a bit more seriously. So if I wanted a certain scan or if I was pushing for something, he typically would accommodate that. But I was having pain in my chest, having pain with breathing. Um, it was very sporadic. It wasn't daily. It came and went, uh, but it was severe enough to make me concerned. And he did a bone scan for me. And I went and met him at the doctor's office. My husband at the time, he was there in the room with me. And I remember the two of them sitting there chatting, saying, Do you think she just worries too much? Do you think she's just stressed out that it's going to return? And, you know, she builds this up in her mind. And that you don't realize until afterwards how how messed up that is. These two men are speaking for me, and nobody's sitting there asking me how I feel or what I think it is. But we did the bone scan, he did accommodate that request, and I got the results back that there was a small lesion on my rib. And both the technician and my doctor had decided that it wasn't anything of concern. It didn't look like the growth of anything. I pushed back this time, which is very disappointing. I thought I was advocating enough for myself this time, and I did question can you explain a bit more why you're not concerned about this lesion? I just for my own sanity, I need to understand why you wouldn't want to look more into this.

SPEAKER_01: 11:32

Yeah.

SPEAKER_00: 11:32

And I did. I trusted him again that it was more conducive of an injury, which would make sense because it was on my left side. And from my past tumor, I've lost a lot of mobility in my right arm, that it was just assumed that I overused my left arm, somehow injured my ribs, and that's what they were seeing on the scan. They did plan to follow up in three months, but it was growing too fast before that had happened. And I was into the hospital, and again, being in an emergency room and having someone come up and tell you you have cancer is not it's not enjoyable to say the least.

SPEAKER_01: 12:11

Wow. I guess like what's swirling in my mind is just that it's a rare form of the cancer. But yeah, all of those things factor into it, like your age and how open they are to listening to the feedback from their patients. It's very disappointing.

SPEAKER_00: 12:30

Yeah. Especially having gone through this before. Um I was a bit angrier that I was angry the first time. I was definitely more angry this time to know that I had pushed harder and asked the questions that I I had learned to ask, and it still wound me up in the in the same place that I was seven years ago. So that was just a bit frustrating.

SPEAKER_01: 12:55

I found that it's a it's like a life skill that you have to learn to. Like I grew up in a family that is very different to authority in general. So that would be like medical professionals, police, right? And so I think I carry that with me. But then at some point it's like you're growing up as an adult and you sort of realize that those professions and people in those professions are not perfect. And it's a skill that you pick up and learn and practice, you know, as you go, if you weren't taught to do that as a young person. And so it just sounds like you got caught up in that because you're this young person who's still filling out the boundaries of the world and how you interact with certain people and titles and the society, and you trusted it, but then it didn't hold up its end of the stick, basically.

SPEAKER_00: 13:47

Exactly. I mean, it's very easy to put the trust in someone that has the education or the experience or specializes in that, and then to add the layer of him being kind of closely tied to some of my family members. I didn't want to disrespect him or I didn't want to, you know, question his authority. It's a great way to put it. I was raised the same way. You respect your elders. And I do have a lot of doctors in my family that even after the first time that I was diagnosed, they didn't understand my perspective of having a bit of mistrust in the system. Um, they made excuses for him or, you know, tried to help me see things a bit differently, but none of them wanted to sit there and think it from my perspective, which was a bit frustrating as well.

SPEAKER_01: 14:35

Yeah, that's hard. Do you still work with him today?

SPEAKER_00: 14:40

I love this question because it makes me feel so silly. Um right now I haven't gone for another family doctor because I have a great team looking after me. That when I have any questions or concerns, I contact my oncologist or my surgeon or my radiologist. But I have sat and given some thought to it. Um, he lives in a different city than me as well. So it's already uh inconvenient to commute up to see my family doctor. And I do think that I would like to pursue someone else. But as of right now, no, I'm still a patient of his. And like I said, I don't I don't want to sit here and bash him at all or say that he's not good at his job. It's more so that once you lose that trust, it's very hard to build it back. And it took seven years for me to build that trust back. And then to be put back in this situation, you have to kind of question is this the right doctor for me?

SPEAKER_01: 15:40

And I ask only because, you know, if it was me, it would be easy to just change somebody online in the portal. But because there is a family relationship there, I was thinking that it's a bit more of an awkward situation for you to deal with.

SPEAKER_00: 15:58

It is. Yeah. He's I mean, he knows my grandma who was a doctor. He's worked with my uncle, he's now working with my cousin. Like it's it is a bit uncomfortable to yeah, to tell him sometimes how I really feel. Um, I mean, we did at both times I was diagnosed, we chatted afterwards, and I say, like, so what happened? Like, how was this missed? And you know, this time I do try to understand because the scans were sent to my surgeon as well, and he he glided right over it too. It was the very the lesion that they were seeing was the very beginning of the tumor growing. But my question then is with my history, regardless of the years that had passed, why wasn't it taken more seriously? If I was sitting there trying to take it seriously, why did none of you? I understand that you can when they look at a scan, they see something different than I do. But for me to see that there was anything irregular on that scan, why wouldn't you question it or look further? And that's where I feel a bit like they failed me. I don't think they should have waited three months to check up on it again. I think they should have done some blood work or other tests that could have helped them maybe figure out what this is or confirm that it was an injury over any sort of tumor growing.

SPEAKER_01: 17:24

So valid questions and say you're entitled to Nobody can answer them, which is frustrating. But agree to disagree at this point. Yeah. So thank you for sharing that process. And it is unfortunately a theme across all different types of cancers, even for cancers that are very common. They hear so often that women who are eventually diagnosed with breast cancer, they've been asking for scans and doctors to look into it. And for whatever reason, it can often be misdiagnosed and not really taken seriously. So it just unfortunately happens way too often. And it makes me always uh nervous about, like, for example, like right now, my mom's doctor I guess had found a small nodule in her lung, I guess about a year ago in an CT scan. And I didn't even know about this. And my mom's doctor sort of explained to her, but there's also a kind of a language barrier because my mom doesn't speak English very well, even though her doctor does speak Mandarin. But like I never knew about it. And I randomly saw in my mom's inbox from her doctor, she's like, Hi, Miss Who, it's time for your follow-up to get a CT for your lung nodule. And I was like, What is this? I've never heard about this. And she's like, Oh, don't worry, it's not cancerous. I was like, How do you know? Anyways, the more you hear people's stories, the more you realize you just gotta be an advocate.

SPEAKER_00: 18:58

It's true. Yeah. I mean, sadly enough, I've spoken to a lot of people that have had similar experiences where they they had to go back to their doctor two or three times or question or push for things just to even get diagnosed. And in the first time I had cancer, in the process of following up years after, they had found a nodule in my lung at one point. And I was told kind of the same thing it's not cancerous, we're certain, you're fine. A lot of people have these little spots in there, and it's nothing to be worried about. But I remember going through that whole process of questioning it, like, why aren't you concerned? Like, give me more information. Even if you do speak the same language, I still think there is the jargon that they use or certain terminology that like I don't always understand why you're saying, and I would like a bit more information or as a standard, explaining to people a bit more. Well, we're not concerned. Okay, we'll continue it on with why we're not concerned.

SPEAKER_01: 20:00

Yeah, and also in like common everyday language.

SPEAKER_00: 20:03

Yeah. Like what is a nodule? Yeah, totally. What's a lesion? Yeah, exactly. Like, and I I did ask that question. And a lesion is anything that looks abnormal different on yeah, abnormal on your scan. So it could be a break in your bone, or it could be, you know, discoloration in a span. They just use the word lesion.

SPEAKER_01: 20:25

And in the beginning, you don't, you're just like, oh, okay. And then after you've been at it for a while, you're like, what actually is this?

SPEAKER_00: 20:33

Like, tell me more, please. That's the funny thing, too. In my family, no one has had cancer. I never experienced it firsthand. I found out actually after being diagnosed that my aunt had had a cancerous spot in one of her organs, that it was easy to remove. She didn't have to go through much treatment. But I didn't know about it until we had that connection of going through the same thing and kind of being told you have cancer. It's scary for everybody, no matter what your treatment is or how it's being removed, or whether you have to go through chemo or not, it's still terrifying to hear that. But going back to my point is I didn't know anything about cancer. I went into it so blindly and same with my family. But this time around, yeah, I mean, I had I'd learned different things, or I'd take them from my experience and I tried to ask the questions, or when I was in for chemo for five days straight, I knew what I was in for. So I'd pack more things in my bag, or knew what to ask the nurses, or knew if I was a bit uncomfortable what they had available to help me out. And I didn't want to go through it again and do it better this time to put it crudely. But I, you know, you do learn, but the only way sometimes to learn is to go through it and to hear what they have to say to you, or to start to hear that terminology, know what it means, associate it with certain things. And if you don't know, you don't know. And if nobody's telling you, it's very hard to know on your own.

SPEAKER_01: 22:05

Yeah, absolutely. I always joke that for people that's gone through cancer themselves or in the family, we all like become those medical terminology experts. You know, you're just Googling it and and I still see it on support groups all the time. Like people would go in support groups and be like, does anyone know what this term means? It's just such a need that they just need to explain better, they need to make it common sense language to help their patients understand. It's definitely a very uh what's the word? Not optimal part, I guess, of the medical system.

SPEAKER_00: 22:40

I definitely agree. Um, just as an example of that, when I went into my first surgery to remove the tumor on my right arm, it wasn't properly described to me that I would come out of it with limitations. He very quickly kind of skimmed over saying, you know, you'll have the functioning of your wrist and your elbow, but any shoulder movement, you know, you won't be able to do. And I'm sitting there, just after being told you'll be in a sling for a month, thinking, well, obviously, like I won't be able to move my shoulder until I get out of the sling. It wasn't properly described that these limitations and the type of surgery that we're doing will effectively remove the function of your shoulder. So I came out of it and still in the hospital in recovery, asking, what's physio gonna look like? When will I be able to do this? Am I gonna be able to lift my hand above my head again? And to be told while you're still on drugs and still uh recovering that no, you'll never be able to use the functioning of your arm the same ever again is it's ridiculous. It's crazy. I think that should have been discussed in detail well before the surgery. I mean, not like I had a choice, I would have had to go through and have the tumor removed either way, but he didn't tell me until after the surgery what they had planned to do and what that meant for the functioning of my dominant arm. So that was definitely something to have to overcome as well. I finished my treatment, but then I still have these scars and this these physical limitations that would remind me every day, you know, what cancer took away from me.

SPEAKER_01: 24:22

That's a totally different territory. That's a permanent loss. And it's a whole process. Yeah. Physically, not only, but emotionally to deal with the loss of function in your body.

SPEAKER_00: 24:34

And to not even be prepared for that or told. Even the way he told me, he started listing off all these muscles that he removed. And I had no idea what any of that meant. Like I didn't, it wasn't my strong student to study science. I didn't know the human body that well. So he's listing off all these muscles that they removed, trying to explain this is why you can't move your arm, because we removed this, we removed that. And I had no idea what it meant. I was just, I remember looking at my sister because she took kinesiology and her face, and she started crying. And that's when it kind of hit me like, holy cow, like this must be serious. Because I don't, I don't think I've I haven't really ever seen my sister cry. So yeah, that was I I didn't even look at him. I just kept looking at her because her reaction made me understand a bit better the extent of what they had done to me.

SPEAKER_01: 25:31

Wow.

SPEAKER_00: 25:31

So this time that I went into surgery, I came in with a list of questions. I sat and chatted with them in my pre-operation appointment for an hour just to try to understand more what they were doing and you know, asking the questions if that, because this time they were playing a lot of things by ear. Initially, they couldn't even tell if it had reached my heart. And then once they did, you know, they had to shrink it enough. Once I finished my chemo cycle, there was again appointments to determine if we wanted to do more chemo and shrink it, or go right in and do the surgery. And everything was, I didn't know, you know, starting today, what things are gonna look like in six months. It was all, you know, here's the next step. We made it to the next stage, then we'll plan what we're gonna do next. But this time around, I definitely did go in asking more questions, but I still feel like even trying to prepare that much, it there's still always the unknowns. I did come out with a bit of limitations and a bit of pain that yeah, I'm a few months down the line from surgery, and they only they said that I'd be fully recovered at a certain point, and I'm still dealing with limitations and and pain that's unknown to me. Um, you go in and you you ask about it or you push a bit harder, and you're just kind of told, like, uh, it is what it is.

SPEAKER_01: 27:00

It's really frustrating. I'm sorry that you have had to go through this twice now. Yeah, exactly to your point. It's like you don't know what you don't know. And so if you didn't think to ask about something, and you would expect them to voluntarily tell you and say, hey, here's this other thing that you might experience and you know you may have challenges with, so that you're prepared at least, but it just doesn't seem like even when you go in with lots of questions, that kind of information isn't necessarily forthcoming. It's like you just have to hit on everything and like pull it out of them, basically.

SPEAKER_00: 27:36

Yeah, or and try to. I mean, even so this time around, I I was going through cancer during COVID, and I couldn't bring my mom in with me or my sister or anybody to kind of pick up on any questions that I might not be thinking about. Because sometimes you are overwhelmed, um, or they throw a lot of information at you and you're you're half processing it well, half trying to figure out, you know, what's my next question, or what should I be concerned about. Right. Or I've even gone into appointments and I just want to get the heck out. And all these questions come afterwards. So that was I tried to prepare as much as I could, but that was a bit difficult this time to not have someone in your corner in these appointments to ask the questions that maybe you've forgotten or that you haven't even considered.

SPEAKER_01: 28:26

Yeah.

SPEAKER_00: 28:27

Um, and then yeah, I don't know why these doctors, I mean, I don't want to generalize, but my experience was that that information wasn't readily provided. It wasn't given to me without me having to ask for it or question a bit further. Um, and even then my expectation did not meet reality at the end of the day.

SPEAKER_01: 28:50

I remember there were a couple of times when I couldn't be at appointments with my dad. I would ask my dad to put me on speaker phone because I was at work or something. And it's just not the same. Like when you're not in the room, it's it's hard to ask questions, hear what they're saying, and be an advocate, exactly like you said, because the person may be overwhelmed. So it's important to have the family there to be thinking and asking those questions. The other thing that um struck me in your intro is you were thrown into all of this when you were so, so young, 20 years old. What are some kind of unique challenges for young people to be diagnosed with cancer and having to deal with it so early in life?

SPEAKER_00: 29:38

Well, I felt alone for sure, because every resource that I encountered or anything that I saw either focused on children or the elderly that were experienced cancer. So I didn't feel like I had anybody that I could connect with in my age group or that kind of understood what I was. Going through. Like I was trying to finish my university and I actually did, I retracted from school because I knowing what my chemo cycle or my chemo treatment process was going to be, it was just all a bit too much. So I um removed myself from university. I ended up going back, but then that had its own difficulties because of my limitations. I was in English, uh, literature minor and a sociology major. So that's a lot of writing and a lot of, you know, work that I needed to be able to type on a computer. I needed to be able to write an essay during an exam. And because I was such a unique case, the accommodations for my school weren't even helpful for me, or I was not aware of them, or I didn't fit into the box of needing accommodations in university. So that was very difficult as well. And it put a lot of strain on me finishing my degree and going to my classes and feeling comfortable. It was also a time when, you know, you're trying to find yourself sexually or being comfortable in your own body. Like there's a lot of stuff out there that makes you hate your body or makes you compare yourself to other people. So to come out of something with, you know, a disfigured arm that isn't working well enough and having to try to love your body again and figure out how, like, not to, you know, be crude or anything, but it is something that it's not often discussed. But having sex after cancer and how that can change, depending on what you've gone through. But just from my perspective, having physical limitations, and that was difficult as well.

SPEAKER_01: 31:42

Yeah.

SPEAKER_00: 31:42

And I was, I was in a long-term relationship. I we were engaged to be married a few years later, but it was still just, you know, trying to trying to love yourself and your body and working through all these different changes and not comparing yourself to others, um, and instead being proud of what your body has carried you through and proud of what you've survived. And then even then, to go beyond that too, like trying to find my career path, but having everything halted in such a way, and you know, having those barriers up against you was just very difficult. I remember going to interviews, and the first thing they wanted to do was, you know, shake your hand. That's how you introduce yourself. And everybody reaches out their right hand, or the majority of the time they reach out their right hand, and I couldn't lift mine up to meet theirs. So I would either use my left hand to lift my right hand up, which is just an awkward thing to do, or I'd have to reach my left hand out, and then you're grabbing it like I'm some sort of princess, and I want you to kiss my hand. And either way was a bit awkward. But then the whole conversation, instead of talking about my credentials or why I want to, you know, apply for this job, or why I want to get this job, why I think I would be good, the whole conversation turned into what happened to your arm? And oh, da-da-da. And it just like it's my interview became about cancer, and oftentimes I never got the job because they probably we probably finished the interview and they realized we know nothing else about her. Yeah. So all of the, I would say the three main things that were difficult to overcome or became big sources of frustration or a barrier in my life being this young and being diagnosed with cancer was definitely finishing my education, being motivated and having the brain, like the the cognitive ability to do that after having poison pumped into your body, uh, was very difficult. And, you know, nobody really having a unique kind of disability, nobody really giving me enough information or providing resources on how I could have been accommodated. That was very difficult. You know, finding your sexuality and loving your body was very difficult. And then, you know, trying to find your feet in a career was also hard to do as well.

SPEAKER_01: 34:15

Thank you for sharing that. And you mentioned that the experience was very isolating and you felt alone. How did you eventually find support?

SPEAKER_00: 34:27

Yeah, no, it's still, I mean, it is it's not linear. Sometimes our your things are better, and then you can slide right back down that hill and you have to climb right back up again. I'm not on flat ground right now. But yeah, I I just remember being very discouraged or embarrassed when I had first been diagnosed. And I was afraid to tell my friends. And I guess that's another point that speaks to your last question, where I did lose a few friends. We were we were all so young, and they were all in this bar scene or you know, going out and drinking, and that's something that I had to step back from. Um, so that was you know discouraging as well. But so I had lost some friends, and I'm I'm so fortunate to have three amazing sisters, a mom and a stepdad that are amazing, and my own dad that's such a great support. I I have a great family that tried not to allow me to feel isolated, but the fact of the matter is that they can't understand certain things of what you're going through. They can listen, but they can't empathize always. So just coming from this place of feeling really embarrassed to talk about it and realizing how silly that was, it made me start to write about it and try to, you know, incorporate my creative writing into writing about my experience. Um, so I did create a blog and I didn't really promote it or I didn't, it was just this modest little thing that I was doing for myself, more of an online journal than anything. But this one girl had found it and she reached out to me personally because she had had um an interesting form of sarcoma as well. It was more soft tissue sarcoma. It was in her arm too, and she was experienced limitations in her arm as well. So she could really identify with what it was going through. And so we connected and we we started chatting, and she was one of the first people that helped me realize like we're in such a unique position, definitely, but there are people that can empathize with you and help you along this path just by speaking with you or talking with you or making jokes about some of the things you go through. And she actually introduced me to an organization called Pink Pearl Canada. And it's an organization for young females, young adults, specifically females, though. They focus on that unique perspective of being a female going through cancer in a certain age group. And I was so nervous to go to the first retreat. I was just, you know, I had finished my treatment and everything. I was on the men, so I was kind of worried like, will I be accepted? Will I be welcomed? But that was kind of my first experience of being completely surrounded by people that understood me. And I walked away from it as a new person. I know that's so cheesy to say, but I I walked away from it making connections that I was never looking for, I didn't know existed. And just even in these brief conversations or hearing other people's stories, it definitely helped me see things differently. And it definitely took away that feeling of isolation and that feeling that I was going through this alone and that not anybody can understand me. So that was extremely helpful. And then in that as well, I was brought into another support group called the Young Adult Cancer Canada. And again, it's another group that is specialized or focuses on youth and young adults going through cancer. And again, I've met just some amazing people through that that support me in ways my family can't. I mean, even you know, when you have questions, I don't always want to go to Google. I would sooner post in the group or message my friend. Um, and I I often get you know better responses or more understanding of what's going on through doing that.

SPEAKER_01: 38:25

I'm so glad that your blog eventually connected you to someone who then pointed you to the North Start. That's awesome. And is there anything else that you would like to say to somebody who is listening and going through a similar experience as you?

SPEAKER_00: 38:41

Yeah, I guess you know, just that you know your body better than anybody else. And it's okay to question or to push a bit harder. It's okay to not accept the first answer. You don't just have to blindly trust your doctor. I think what you should put a bit more trust in is your body and what it's trying to communicate to you. And it's hard to find that balance after being diagnosed and going through it, you know, to not associate every ache or pain with the return of cancer. That can be detrimental, but sometimes you do have to listen to what your body's telling you and maybe push a bit harder. Just by asking those questions, you could either catch something early or find out that there's nothing there. Right. And either one of those are positive in my mind. So yeah, just to know that you should be trusting your body and listening to the messages that it sends you and not always taking the first, you know, response or diagnosis from your doctor as final.

SPEAKER_01: 39:45

Awesome. Thank you for sharing that important message. And where can listeners find your blog? Online and elsewhere.

SPEAKER_00: 39:53

Um, well, I do my handle on Instagram, which will link you to the blog, is at wonkyarm. And that's just because I've I've just started to describe my arm as oh, it's my wonky arm, my wonky arm. But it was never anything negative. It was always, you know, I love my wonky arm. It's a bit different, and uh, you know, it does its own thing, but it's it's my wonky arm. Um, so you can find me there and uh find some of the things I've written about on wonkyarm.wordpress.com.

SPEAKER_01: 40:23

Awesome. I love that. It's like claiming, right? Sense of empowerment in the wonky arm.

SPEAKER_00: 40:30

Yeah, and I've I've even like other people that I've met, um, you know, we'll talk about it and stuff, and they walk away from the conversation saying, Oh, my wonky leg or my wonky arm. And I'm happy that to some people it's turning into a term that you're proud of. And I always say, like, love your wonkiness. Like it's yeah, it's okay. I love it.

SPEAKER_01: 40:50

Well, thank you so much, Emily, for coming on the show to share a part of your story today.

SPEAKER_00: 40:56

Thank you for having me. I had a lot of fun.

SPEAKER_01: 41:00

You probably heard me talk more during this episode than most others because I was feeling pretty frustrated by the experiences Emily had to go through with her doctor. I know she was being very diplomatic about not discounting his professional abilities completely, but to not have changed his ways given what happened the first time tells me that he did not take ownership in the situation, which honestly is a sign that he's not very focused on improving patient care, and it's so dangerous for patients who are medical outliers like Emily is. I also want to thank Emily for highlighting the experience of living with a disability after cancer. In addition to feeling isolated from her peers, because cancer can be rather foreign to people in that age range, she had to navigate an extra layer of complexity when it came to relationships, sexual intimacy, school, and work. Just thinking about how nerve-wracking interviews still are for me today, I can only imagine how hard it was for Emily to have had to not only manage her own insecurities, but also quickly learn to direct conversations with strangers in a way that didn't reduce her to just cancer and the disability. I hope Emily is super proud of what she has accomplished given all the barriers she has had to overcome and continues to share her experiences through her creative writing because there's so much strength in her words, and it is such an inspiration to others who may be going through similar challenges. That's a wrap for today. Please follow the podcast if you will like to hear more stories from cancer patients, caregivers, and family members. I would really appreciate it if you can leave an honest rating and review in Apple Podcasts or Podchaser so I know if I'm serving the interests and needs of you listeners out there. You can also share any feedback and suggestions directly to me by visiting talkabout cancerpodcast.com. Thank you for listening.