Beyond Brain Tumours

A young-adult perspective from a caregiver, on community, and living after a brain tumour diagnosis | Part 2

• Brain Tumour Foundation of Canada • Episode 13

Share episode

In this episode, we chat with power couple Esther and Elman about what it means to navigate brain tumour care and recovery as young adults. Esther reflects on her experience as a young adult caregiver, the challenges and barriers she faced, and the support that helped her along the way. Together, they reflect on their shared commitment to giving back to the brain tumour community and how they continue to build a life rooted in purpose, hope and resilience. 

For additional information, you may visit: 

Learn more about Brain Tumour Foundation of Canada at BrainTumour.ca. Follow us on Facebook, Instagram, X, YouTube and Linkedin.

SPEAKER_01:

Welcome back to part two of Beyond Brain Tumors, a podcast of inspiration, hope, and support for the brain tumor community. I'm your host, Ben Seawald, Support Services Specialist at Brain Tumor Foundation of Canada. In this part two of our conversation with Esther Jasman and Elman Mirzai from Ottawa, we'll be discussing Esther's caregiving role during Elman's brain tumor diagnosis and treatment and figuring out what life looks like after diagnosis and treatment. Please have a listen to part one of Esther and Elman's story for a longer introduction and some context. Welcome back. Here in Canada, we love our healthcare system. However, from the perspective of Esther, the caregiver and Elman, the patient, who navigated some pretty intense treatments, surgeries, and post-operative care resources, can you help me identify some great things and maybe some areas for improvement from your experience?

SPEAKER_00:

Yeah, absolutely. I mean, so I think here in Canada, we can, especially right now, we are often faced with um stories of our healthcare system failing, uh, of our healthcare system maybe, you know, not doing as well as healthcare systems do in other parts of the world. Um, but something I really want to highlight is that we are able to get care here and it is able, it is capable of being great care. Um I, in this journey, I have never felt worried or concerned or seen anything that has, you know, brought worries or concerns on that Alman wasn't getting sort of the best care that we have access to here in Canada. Um, being in Ottawa, we are lucky. It's a bigger city. We have a great hospital system, you know, it has cancer center. I think we have four or five hospitals here. Um, so it's coming from that perspective. Um, however, it's our our system here in Canada does allow us access to some great research, some great, some great doctors. Um, you know, I think all the services is most of them that you'd be offered elsewhere here in Ottawa, at least, that we'd be offered in Toronto, other Vancouver, other big cities in Canada. Um, of course, there are some gaps, I would say, and I think Allen would agree, um, funding for certain aspects of our healthcare system that I think we're all aware of here in Canada, you know, pharmacare, anything, any drug that you take that is not administered in a hospital is not covered. Um, in our case, Elmond's chemo was oral chemo, which for quality of life purposes was very important because it is a lot less harsh than infusion chemo. Um, but something we had to learn and very fast was that that meant it was not covered by um the province of Ontario. So, as you can imagine, being thrust into that incredibly fast, um, and also with the urgency of having having to start that that protocol really quickly was very jarring. I have to say, here, something that was an incredibly positive experience. I do want to shout out Extend Pharmacy here in Ottawa. They are a cancer-specific uh pharmacy, so they only deal with um cancer drugs and like so chemo uh and then any drug associated or like needed for um that cancer treatment, so like anti nausea drugs, for example. Um, but they were fantastic. So they helped us navigate some of those gaps that I just mentioned. They have um, I think believe two staff members, maybe more, who work specifically on getting funding for your drug. So they worked for me in our case with my insurance company um through work to be able to make sure that all the forms were filled out properly. Um, the insurance company had the forms. If the insurance company had questions, they could deal directly with the pharmacy. They didn't have to call me, uh, things like that. And also, too, when my insurance company wouldn't approve the drug right away, they worked to find other funding programs to be able to get the drug covered and the drug into our hands. So that's something, yeah, I really would like to highlight because I think um we often think of pharmacare here as being very expensive and certainly a gap in our funding, and it is. Um there's no way around that. It is certainly a gap, but there are organizations out there that are working to help patients and caregivers and families navigate that, uh, both from a financial perspective and an administrative perspective. And um, that's important too.

SPEAKER_01:

Yeah, absolutely. I mean, just even getting that guidance and direction on all of these things that were never on your radar to begin with, um, is so, so helpful. So we will absolutely put a link in the show notes as well to uh to link to them.

SPEAKER_00:

Yeah, excellent.

SPEAKER_02:

I underestimated how important it is to have the drug ready for when you're scheduled to take the chemo and how much goes into that. Uh the caregiver has to have she had to do a lot. Esther had to do a lot to make sure that pill was in my mouth in the time that was prescribed for me. Um, yeah, thank you.

SPEAKER_00:

Oh yeah. All right.

SPEAKER_01:

Literally saving lives, right? So yeah. Yeah.

SPEAKER_00:

Anytime.

SPEAKER_01:

So, Esther, patients get so much of the attention during brain tumor journeys, and for obvious reasons. But let's take a moment and give you a huge standing ovation to you and all of the other caregivers out there for everything that you've done. What was it like to step into this role so early in your marriage and relationship? How was that? And what was the most difficult part? Or what was the best part?

SPEAKER_00:

Well, thank you very much for the acknowledgement. I think uh that has maybe maybe I'll touch on what was the most difficult part first. I think it's that uh caregivers certainly uh take a back seat. And like you mentioned, for obvious reasons, we are not the patient. You know, our lives are being affected, but in a very different way than the lives of the patient. Um however, we are still alongside um alongside the patient. In this case, I was alongside Alman, dealing with all sorts of the same or similar existential questions and life altering decisions that he had to make. Um, and I think that the sort of the positioning of not being the person going through it and also being the person going through it, probably the most difficult part. It was the most difficult part for our marriage, I would say. Um, and also the most like so for both of us, and then individually for me too. There's a bit of a sort of determining your identity within this journey and and you know what you would like it to be if you make a decision, if you give a piece of advice, if you share your opinion, you know what does that translate to? Um, not a lot of people want to hear someone's opinion on how they should live their life or what decisions they should be making. Um and as a caregiver, it's very hard to sort of navigate that line and determine that line. And I think for us in our marriage, being so young and so early into our marriage and our relationship and not at all where we expect it to be, determining sort of where that line was, very challenging. Um I will say the best part I think has been, and I say I think because it changes, but I do think it's probably been for us being able to navigate something like this so early in our marriage while challenging most days. It has allowed us to really develop some strategies and tools that I don't think, you know, relational like, you know, between the two of us that I don't think we would have, maybe ever. Um, you know, I think couples who are together, you know, 30, 40, 50 years, eventually someone goes through something. You have to learn these things, you have to deal with these things. They're incredibly challenging no matter how old you are, how long you've been together. Um but I think for us, we will end up benefiting more so in the later years because we've had to do this now. You know, we both, I think haven't mentioned right now, but we both um see therapists, we both have seen therapists individually prior to this happening. Um, this, you know, we have managed to do therapy together that has been incredibly helpful. Not sure we would have pushed ourselves to do that um so early on. I think also, too, both of us have had to get really good at communicating our own needs and also before that figuring out what they are, um, which is, you know, as any, I think probably married or per partner knows, is incredibly challenging no matter what.

SPEAKER_01:

Um super valuable skill, right?

SPEAKER_00:

Super valuable skill.

SPEAKER_01:

Yeah.

SPEAKER_00:

Uh so you get to know yourself better, helps you get to know your partner better. Um and certainly necessary for thriving and surviving in, you know, no matter what. So um yeah, so I guess the most difficult part has also been the best part in a lot of ways.

unknown:

Yeah.

SPEAKER_01:

Any thoughts, Alan?

SPEAKER_02:

Uh I just couldn't agree more. And just hearing her speak um kind of starts the tears in my eyes um because I'm just so proud of uh, you know, all the challenges um that she's had to face and all the fights she's had to fight for me, for you know, my life. I yeah, I'm really I'm really lucky that I have this wife uh in my life.

SPEAKER_01:

It's a great one. It's so beautiful to see the both of you and how you've come through together and um how you've gotten closer through this. And I think uh there's always the opportunity or the the um the fear that these kind of situations will tear you and everything around you apart. And so um it's just it's so encouraging to see how how you are so connected to each other.

SPEAKER_00:

Thank you. Yeah, well, we've had to work at it, but it's it's working well.

SPEAKER_01:

So anything anything worthwhile is is gonna be work, right? So also true. Yeah, very true.

SPEAKER_00:

Yeah, yeah.

SPEAKER_01:

So, Esther, how important were your family and friends during the diagnosis and treatment both times? Um, can you talk a little bit about the sport from your community in Ottawa or beyond?

SPEAKER_00:

Yeah, absolutely. I think our friends and family, I mean, both times were incredibly important to us. I think for me, as sort of someone on the peripheral, you know, still inside what's going on, but not the actual person directly affected. Um, I really use my family and friends to help me process what was going on, to help me process challenges I was having, maybe with like maybe relationally with Elmen, um, you know, also as a way for me to just be able to maybe also to talk about something else that has nothing to do with what's going on in my own world. Um, I think the first time around, I had really incredible support from two of our best friends uh and my mom who came and stayed with me for like the whole week that Almond was in the hospital, which was so, so kind. Um, again, COVID really benefited us in that sense because no one had anywhere to go. Um, but it that certainly helped me just be able to not be alone and sit in my feelings to a point where I couldn't handle that. Um and yeah, I would say kind of we, and by the second time around, we sort of both learned how to use everyone different, a little bit differently. Um, you know, my mom is good at certain types of conversations, a good at certain types of emotional support, and maybe a good at knowing when to like distract you and like say, we need to go do this activity because you guys are, you know, you're you're being too sad and like we're okay right now, so let's go. Um, you know, our friends for like, yeah, just for trying to trying to make things a bit normal. Elman's parents for different things. Um, you know, I think too the first time around, it also, you know, also an important piece to touch on is that um everybody deals with things differently. I think we all know this, uh, and it's easy to see or easy to conceptualize when it's not a life or death situation. It's not a life-altering situation. Um, but that I think I would be remiss not to mention that we have both struggled with that within our inner circle. Um, you know, things, especially illness, especially illnesses where they don't necessarily show up the way you know we think an illness is going to show up, the way it looks on TV. Um it means people are gonna react in a different way. People may not be support able to support you in the way that you would like them to support you, or you need them to support you. Um, and we it that and that is in and of itself a an incredibly disappointing and challenging thing. Um it we have had to learn sort of the hard way, how to navigate that with really important people and family members in our life, um, and and sort of you know, work to figure out, okay, what do we want to expect from them? What can we expect from them? And if they can't give us that, where else can we find it? Like, you know, which friends, maybe our friends aren't showing up as much as we want them to, or in the way we expect them to, you know, it doesn't mean need to mean anything, you know, but where else, where else can we find that thing if we still need it? Um I think the other thing too, and then I'll let maybe let you speak a bit, but it is also too about being very specific about what you need. So it's really awesome when people ask you that, but also I think something too, we learned being so young. Our friends don't know how to do that. We, you know, our friends aren't aware of how to help someone, right? Like going through a big situation. No one's had a baby yet. No one like we have no idea, no one knows. And so being able to say, like, I just need to like go for a walk with you once a week, that's what I need, and I need it to be like a constant thing. Or I need you not to ask me about it at all. I just want to pretend like everything's fine, or I need you to cook for me once a week. Can you cook for us? Or can you pick Elman up? Or can you drive him to radiation? Or, you know, being able to like delegate, delegate and like really pick out your tasks so that because it's very easy, I think, and we both learned this very quickly. It's really easy to build resentment amongst your inner support circle in a way that's not anyone's fault, but it also doesn't serve you, it doesn't serve anyone either. It doesn't help you, it doesn't help your partner, it doesn't help your, it doesn't help your friends and family either be able to reach you. So I think, yeah, I think for us we're very, very lucky to have an inner circle who has been who's been friends with us. I mean, our friends have been friends with us since high school, so for almost 20 years. Um, we live where we live in the same city as both of our parents, other, you know, um, and a lot of family members, and we're very, very blessed. Um, but I think I yeah, and I think too, and then and then also to finding the brain tumor community here um in 2023 was also very instrumental for both of us just to be able to get um to get that perspective from a community of people that that we didn't know as well, but who were going through similar things.

SPEAKER_01:

Yeah, I would say that absolutely to your point that kind of younger people have a hard time knowing how to kind of support people around them just naturally. Um, I myself, I was diagnosed with my brain tumor when I was 18. And so a lot of my friends just didn't like didn't know what that was. And especially, I mean, when I was diagnosed in 1996, like it really wasn't as even kind of common or commonly known, maybe as it is now. Um, and so uh yeah, the the support from friends specifically, I think uh having the ability to ask for specifically exactly what you need was something that like I really developed through that process.

SPEAKER_02:

Yeah, I I love that. Like the like you guys both pointed out, I was like asking exactly what it is that you need because you know I would find myself in cancer communities online reading blog posts, people are saying, like, I sent this list out to all my friends of like things I want them to do. And so what are like possible gifts they could get me and made someone be a Uber Eats gift card? And and they've like project managed it so well amongst their caregivers. And I was just like, there were times I was like, I just want someone to do this all for me, but but there is no one that's gonna be able to do that because everyone's burdened, everyone has their own stuff going on, and so yeah, the lesson is is clear. And and I just have to say, like, I also feel so grateful for the friends that we have knowing them for so long now. Um, you know, like it's just I was I remember like so many nights, like I think Guy's night kind of got started because of we like among my friends at least, um, really ever since I had a brain tumor, we kind of start to prioritize a boys' night uh every couple weeks or every couple months. Um, and that kind of has fallen by the radar. And now just talking about it, it's making me even want to plan that out with my friends and so Esther can have her girls' nights. And you know, because those are those moments, like you know, as young people going out to a bar, going out to drink, that they're so I think important. And um, yeah, I I don't want to uh overanalyze it, but it just it really helps uh keep the edge off from the whole situation when you're just able to go out for a couple of beers with your friends and and just yeah, enjoy life.

SPEAKER_01:

Yeah, and it doesn't have to be anything huge where you're kind of sleeping on the roof of a hotel and waking up with chickens in your room and yeah, and with Mike Tyson or anything, like it doesn't have to be overstylish.

SPEAKER_02:

And actually, you probably don't want to drink beer because whoever's listening to this is probably a cancer patient and shouldn't be drinking alcohol anyways.

SPEAKER_01:

Right, right. Um, really quickly, Elman, did you name your tumor?

SPEAKER_02:

I saw that. Um, I did not name my tumor.

SPEAKER_01:

Okay. Interesting.

SPEAKER_02:

But you know, now I might want to name one. Um, yeah, I I I gotta think of a name. I got I'm good at naming my cars, but not my yeah, yeah.

SPEAKER_01:

No, it was interesting. Just uh again, from experience working with um a number of people in the in the community. Um I find more often than not they they do, they kind of personify and name their tumors, uh, which helps some people kind of with their treatment specifically to have kind of a a personality or kind of a perspective, uh kind of a name there to to go after and attack. So um let me know if I can help with that at all. Um be interesting to kind of come up with a personality for your tumors.

SPEAKER_02:

Uh you're you're tempting me to name it Ben now, but uh I'll let you know.

SPEAKER_01:

Okay, amazing. Okay. Um Elman, so any final lessons learned, thoughts from your awful diagnosis, um, kind of where you found joy, meaning, kind of how you center yourself in everyday life?

SPEAKER_02:

Yeah, um, so um I have to thank my cousin uh Aiden um for this. Um on my first day of chemo, um he sat me down and said, What do you want to do with your life in the next 10 years? And we set out a big plan. And uh it sounds crazy to say, but um, yeah, I I want to own a mountain one day. I'm a really avid skier. I have a whole ski uh social media profile. Uh, I've got a blog and kind of working on ski content. Um, and so what keeps me going and what excites me is just, you know, a hobby, a passion, something like that, skiing, which uh it really is a big part of my life. Um, another thing, going back to you know, uh support and the caregiver experiences, um, one big thing for me to learn from my therapy was uh understanding the grief circle or the circle grief. So, you know, I'm in the center, and then just outside in the next circle is Esther and my parents, and then outside of that is all of her friends and family, and and uh, you know, communicating uh how this plays out to them and how that works so that you know, uh it's not the per you can't be uh dumping on someone uh on an inner circle, you know. So uh Esther can't be necessarily dumping her stress of being caregiver onto me, but she can to her friends. And and and you know, um, but I hear and and this is also why I think a lot of caregivers are kind of in the backseat, because in this uh model it definitely just basically uh says that I can sort of dump on um anyone, which is also not really that fair. Um so yeah, I think just from my point of view, uh yeah, overall, um, my biggest word of wisdom um is do what you love to do. Time is your most valuable resource. Um, you know, if you love to play basketball, which I do, if you love to ski, if you love to bike, if you love to just sit outside and do some painting or some knitting, um, just really try and maximize what you love the most with with the limited time that you have.

SPEAKER_01:

That's great advice.

SPEAKER_00:

Yeah.

SPEAKER_01:

Esther, same same question.

SPEAKER_00:

Well, I think for me, I I I should shout out that grief circle theory and maybe we'll link the art. There's an article for it we can link, because I think I think that, I mean, it sounds kind of it doesn't sound so exciting or, you know, I don't know, relaxing, but um figuring out how to communicate and like how you're gonna navigate all of the emotions that are gonna come up um is was is incredibly important. And um, you know, utilizing like a theory, like the grief circle was really helpful for both of us to be able to visualize. Also super helpful to be able to like send a link to like a family member and be like, here you go, this is how we wanna be. We want to, we want to talk, talk about this and manage this. Um, because not everyone, you know, it's a learning experience for everyone uh to kind of how to deal with with something as as big as a brain tumor diagnosis. Um, I think I just I mainly just echo Almond. I think we, you know, really figuring out how to live to live your life, doing what you love to do, what you want to do, both individually and as a couple, not letting something like this get in the way of allowing you to dream and you know, um, and have fun. And maybe, you know, letting yourself using it to let yourself do something, you know, have a crazy experience you want to do. Um, we love to travel. We didn't think that we'd be able to travel while Ellen was on chemo. We traveled more, I think, in that year than we have, partly because we had the time and Alan was healthy, um, like healthy, you know, considering. Um, so I think, yeah, really just making sure that you're still able to do stuff that fills your cup and as a caregiver, that you're not forgetting yourself, you're not, you know, losing yourself. Um because you will a little bit, and that's normal. But then making sure you're then, you know, taking a step back and going, kid, things are okay now. I'm gonna go and do my own thing so I can come back and feel feel even better than I did before. Um, you know, I travel by myself. That's what I love to do. I have a family member in New York City. I like to go to New York for long weekends, shop, eat, socialize, you know, do, you know, alone, um, and do things that I wouldn't do here in Ottawa. And then I get to come back and, you know, be thrown back into our world. Um I think that's something that's important probably in every marriage, no matter what, at any point in time, is taking time to yourself, but certainly um in the context of a brain tumor and then being a caregiver, I think that should kind of jump the jump to the top of the list of of important things. Um and it's uh definitely something I've learned in the last five years.

SPEAKER_01:

Wow, this has been an incredible conversation. Thank you so much for such an authentic and important uh interaction. Um, and for the Power Young Adult couple, Esther and Elman, for joining us today. Uh, talking about the importance of communication, advocating and prioritizing for yourself and finding joy when and where you can. Esther and Elman, I'm humbled by your strength, your obvious connection and partnership, and for your contributions to your communities and to the Brain Tumor Foundation of Canada. Thank you so much for joining us and sharing your story.

SPEAKER_02:

Amazing, thank you.

SPEAKER_01:

In a world where the challenges of a brain tumor diagnosis can be devastating, Esther and Elman are standing with Brain Tumor Foundation of Canada as a beacon of hope and transformation. Thank you. Stay hydrated and stay strong.