Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast! I’ve got a great conversation for you today. I’m talking to my new friends, Gabrielle and Alex. They have a podcast called Soar Above Cancer, which I love and we have a fantastic chat today about what it’s really like to be a young adult who’s dealing with cancer. Here are some things that we cover today:
- The shock of being diagnosed with cancer as a young adult
- The importance of calling on your support network through treatment
- How relationships and friendships can change after cancer
- and much, much more!
Instagram – https://www.instagram.com/soarabovecancer/
Facebook – https://www.facebook.com/soarabovecancer/
Instagram – https://www.instagram.com/alexmandarino/
Facebook – https://www.facebook.com/alex.mandarino.12
Joe: It’s so fantastic to have you on, guys. Alex, I really want to start with you first, what was life like before cancer?
Alex: Yes, so myself, before the time of diagnosis, right before that, I was about 20 years old, so I was in university, I was studying my Bachelor of Commerce degree. That was interesting. I was very into my academics. I was very interested in school and into the business aspect, working as often as possible and on my studies and things like that. When you’re 20, you have a big social life, so I was trying to hang out with friends as often as possible, go out on Friday/Saturday nights, even physically I was in the gym as often as possible.
I was very active, I was building up muscle. At that time, in your life, you’re figuring out where you are in terms of what you want to do, in terms of the type of person you want to be, you’re meeting new people, you’re meeting new friends. It was a very fast-paced lifestyle in a sense. It was at the time where you feel a little bit carefree and on top of the world.
When you’re 19/20 years old, first of all, you feel like you know everything and you feel like when you plan something out, you feel like that’s what’s going to happen and you’re going to see it through to fruition. Obviously, at the time of diagnosis, it changes your perspective on things, but prior to that, I was a very active human being. It was a big drastic change when that happened.
Joe: Yes, absolutely. What about you, Gabrielle, what was it like for you?
Gabrielle: I was also in university. Actually, similar experience as Alex, I was 19, I had completed my second year of my bachelor’s degree. I was like Alex, very involved with school, with friends, focusing on just getting it done and enjoy that life of a young adult. That, like Alex said, is kind of carefree and really out there. You get to experience a lot of new things and living on my own for the first time, too. Then the diagnosis happens. Then there’s that huge drastic shift that a lot of young adults do live where you might become dependent again and the life just isn’t the same.
Joe: Yes, absolutely. Gabrielle, what was going through your mind when you first found out that you had cancer?
Gabrielle: I tend to like to think that I was really thinking, “I’ve got this.” I think I was to some degree. I think I was in denial, too, at first, about how big this cancer experience would actually become. I like to think that my first initial thought was, “I can do this.” I’ve got this, we can go from there, and whatever happens, I can manage. It won’t be easy, but I can manage it.
Joe: Yes, it’s great that you felt that you could work it out. Alex, did you feel the similar way?
Alex: I would say so, but initially, I would say shocked. I’d say for the first ten seconds or so, I didn’t really know how to react. Obviously, your parents are in the room, so you want to be strong. It’s a new experience. It’s not something you’d feel like you’d hear at any age, let alone when you’re younger. For myself, I thought it would be maybe easier than I anticipated. Obviously, the words leukaemia or cancer in general, you think the worst. At the same time, you think, okay, I’m young, maybe it’ll be okay.
All I have to do is deal with the treatment that they’re giving with me. It’s almost as if you’re saying, “Here are the tools, now you’ve just got to do this, and you’ll be fine.” My mentality was, it was just a straight line, let’s just focus on the task at hand. Hopefully, with the support of the people around me, then I can be fine. At the same time, I was so focused on my life prior. I think one of the first thoughts was, no, this sucks, I’m not going to be able to stay in school.
Not like, my health is in jeopardy. Not, okay, now I’m going to lose two years to focus on cancer. Your priorities, mine weren’t really in check. It was definitely a whirlwind. Yes, it was difficult to take at first. I think my initial thought was, “I can do this, but let’s at least reach out to my support system and let everybody know what’s going on.”
Joe: Yes, absolutely. You mentioned that your parents were there, and you were trying to not freak out for them, as well. What was it like with your family and friends? Did you feel that you had to behave in a certain way?
Alex: Yes, it’s tough because I think you feel like you have to become – be the same person that you were initially, because when you get all of this information, I know one of the first days everybody came in, the doctor, the new dentist I might be dealing with, the nurses, everyone with all of this new information. Me and my parents, we knew all of the stuff we had to do. Within the first couple of months, we knew how this situation went.
We had a regular routine. At the same time, not a lot of people outside of my immediate family knew what was going on. They knew the idea of cancer, but the idea of what comes with that, it’s a very vague image of what to expect. For myself, I felt a lot of the time, I had to put on this brave face. I had to be the exact same person. I didn’t really like to be pitied, so I always tried to be as strong as I possibly could, even though there were some days I didn’t even feel like even talking to anyone. I did have, one thing I will say, an amazing support system. Some of the closest I’ve ever felt to my family.
They were, by far, the part that made it the easiest for me to actually go through this experience, but I know a lot of the times I felt like I had to be the same strong person. I had to be as confident as possible because I didn’t want to look weak at any point, which is hard because there are some good days and there are some bad days.
Joe: Yes, absolutely. Sometimes to pull yourself together and you don’t really know what to say. Gabrielle, what about you, how did you react with other people?
Gabrielle: I was really open about my cancer experience. I’ve always been, and I continue to be because I think it’s important to share that. I had the misfortune to go through it, through a lot of it. For me, it was important for me to just be open. By being open, I think it allowed other people to be a little bit more comfortable with the experience, too, which allowed them to be a little bit more present in my life. When you’re diagnosed at 19, you have family who’s more than amazing and able to show up. They know how to, and they just love you unconditionally, so they’re able to show up.
When it comes to your social life, you’re 19 and no one really knows how to react. By being open and really capable of speaking on the subject and being comfortable. I used to be able to take off my scarf and I didn’t have hair. I just felt really comfortable talking about it and being with that experience that I think helped me cope within my social group and let them in to that experience that was new for all of us.
Joe: Yes. Absolutely. When you were going through treatment, did you know anyone else who had cancer or especially young adults?
Gabrielle: We have a wonderful community here in Canada. Alex, you’ll be able to speak to that, too, I’m sure. We have an organisation called Young Adult Cancer Canada. They are absolutely amazing. They have local chapters in the major cities, as well as they do retreats and a conference and there are online forums where we get to chat. I wasn’t very active with them from the start, but as I went along, I did meet some people through that website.
That’s actually how Alex and I met. That was a huge support. I think it’s important to be able to talk to other young adults that are going through that experience because it’s such a unique perspective on the entire experience of cancer. I’m sure, Alex, you have more to add about YACC, but from me, that was really key when getting in touch with other people who just understood what I was going through.
Joe: Yes, absolutely. YACC, what a great acronym. Alex, what was it like for you, man?
Alex: Yes, I didn’t know anyone going through the actual experience, especially when I first started, I think I knew one person who I used to go to school with who had lymphoma at one point and went through the experience. I had reached out to him when he was going through it, I think a couple of years prior to me. It was just, I hope everything’s okay, everything is going fine with you. If you need anything, let me know. It was brief. Then when I had it, I was in this by myself in terms of the actual cancer community.
Then similar to what Gabrielle is mentioning, I found YACC, Young Adult Cancer Canada. The founder actually reached out to me about a month into my treatment. I just wasn’t listening. I wasn’t having it. I didn’t really want to deal with any other people with cancer. I felt like, okay, I don’t really want to have to talk about this like a social support group. I think I’m just going to focus on my friends, maybe I’ll just push through this and then in two years I’ll be fine. It worked but at the end, I said, okay, I met someone through the hospital that I went to in Toronto, Princess Margaret Hospital, so it’s the cancer centre there.
I think I met someone who was going on their last day. We talked for a little. I found them on the YACC website. We started chatting. She said, “Do you know what? You should just come out to this program and just meet some of these people.” That was my introduction into YACC. From then on, I met like 100/150/200 people around who are similar in age, it’s about 18 – 39 years old, that are going through it.
You can talk to them about anything, they have the survivor conference every year where about 100 people come in and it’s like a two or three-week activity, conferences, all that fun stuff. Afterwards, I felt that community and I was able to talk to people about everything. Initially, I didn’t really know a whole lot of people, so it was difficult, but once you find that calling, it was fantastic. I always recommend getting in touch with people going through the same thing because it’s really a good shoulder to lie on.
Joe: Yes, absolutely. I really regret not having that support system, as in these people going through the experience. In a way, it was meeting this one guy at the hospital, which was a really fantastic experience, because I guess no matter what support you have from family and friends, there are still times where you feel like, and you feel confused, when you feel alone. Did you ever feel like that? If so, what did you do then?
Alex: Well, I know for me, there are always times you’ll feel alone because if you have your family and friends, like you said, they’re a support system, but it’s not first-hand, it’s something that you have to experience, when you’re feeling sick or nauseous or mentally drained, it’s something that you’re dealing with, not everyone else first-hand. You have to search inside yourself and deal with it. For myself, I just try to keep busy, I would find a book to read, or I would find somewhere to escape reality, put on a movie, go for a walk, clear my head. I like being by myself, even now, when I like my alone time.
I think a lot of that stems from the cancer experience itself. When there are times I just felt alone, either I would just deal with it in the sense I would find a way to escape reality through fiction or through reading a book, an activity, trying to work out in some capacity. Then in times where it was just too dark and too difficult to deal with myself, I’d probably try reach out to someone in my family and chat with them, or meet with a friend I hadn’t seen in a while and say, “Do you want to grab a coffee?
Just go out, chat about life and see where that conversation goes?” There are a lot of different ways to deal with it, but there definitely were times where you feel alone. Even when you have so many people around you. Unless you have someone, who knows exactly what you’re going through, sometimes there are certain aspects of like that you just can’t really talk about.
Joe: Yes, absolutely. Gabrielle, how did you try to find that balance of being by yourself and being with other people?
Gabrielle: Yes, I think I’m very introverted, so I think a lot by myself, I reflect a lot. That’s a time that I really do need to process the experience. I’ve done it through the entire experience. I continue to do so now, considering that it’s not necessarily over after treatments are. There’s stuff to deal with afterwards, too, so I continue to be really reflective in enjoying that time by myself, where I do get to reflect on everything that’s happened and figure things out for myself. At the same time, I really enjoy having that support from others, so my family is great.
Of course, they offer me most of the support that I get. As well as socially, I have friends who have stuck with me through the entire process, who understand my story and who are still around, which is really nice. Of course, Young Adult Cancer Canada has offered me an opportunity to be social and receive that support from others. Balancing it becomes easy when you have such a great support system who allows you the time that you need to be alone and to reflect and to process, but also welcomes you with such open arms when you need to chat and to get your mind off of things.
Joe: Yes, that’s a great balance. In terms of reflecting, do you have your own process, what do you do?
Gabrielle: I’m just a thinker. I just think all the time. That’s in my nature and my character. I do have a blog and Alex and I have the podcast, where I do get to reflect a lot. I had stopped blogging for a while just because things were getting hectic in my life. I’ve started again. I think that’s one of the best ways for me to reflect on things I did to put my thoughts on paper. Put them in an organised fashion, because in your head they’re never really that organised. We get to share it either on the blog or with Alex and our guest. That’s always a lot of fun.
Joe: Yes, that’s great. Alex, what about you, man, do you do things apart from the podcast, like in some structured way?
Alex: I had started actually about eight months ago, writing on a Microsoft Word document and I wanted to start a book, like an autobiographical piece about what I went through. Just for the two and a half, three years, of right before cancer, and cancer itself and going through. Then a little bit of right now. I got about 40/50 pages in and then I took a hiatus, based on, Gabrielle said, you get busy, you have other stuff going on. Then sometimes you take a break, sometimes it’s hard to get back into it.
It’s been something I’ve been meaning to get back to because it is good to reflect and I want to be able to write out and discuss many of the points that I went through, whether it’s good, whether it was bad, trying to piece together a lot of ideas and advice to the next set of cancer survivors that are going through the things that they have to go through. It’s not something I was working on recently, but it was something I was working on last summer.
It’s something that I really do want to get back to because it helps me get some peace of mind and some closure on the experience itself. It obviously, when something maybe comes out and they can put something together, if I can actually publish a book one day, then it would benefit the kind of people going through cancer in a young adult sense, and even maybe when you’re a little kid or maybe older. A lot of the advice and a lot of the lessons are universal.
Joe: Yes, it’s interesting how your perspective changes, from the moment you find out to the moment when you’re in treatment. Then now, like, you’re still going through check-ups. When you were thinking about the book and thinking about it now, how does your perspective change around that?
Alex: Yes, it’s a lot because when you originally start, I think a lot of people going through cancer just want it to end, they don’t want to have to deal with any of this ever again. I’m speaking for myself. I know I just didn’t want to have to deal with anything. I didn’t want to have to bother talking to anyone about it. It was just we have the two and a half years, two years, two months, let’s just do it and get on with it. I didn’t even want to have to write about it or talk about it.
Then when you get either halfway through or near the end, you start realising, okay, obviously, this isn’t fantastic, but I’m learning a lot about myself. I’m learning a lot about what I want to do in the future. As much as I don’t want it to be a part of my life, it is actually a part of my life. It’s something that I should be a little bit more aware of and maybe use it to benefit the greater good. Even something like Gabrielle and I, and yourself, making these podcasts and the blogs and stuff like that, we do it for ourselves, but we do it for others.
Even writing a book, okay, I get to write out my thoughts, but then I also get to help out people hopefully who get to see this perspective. Even if I can help one or two individuals, then I’ve done my part to give back. It makes you somewhat of an advocate for cancer, even if you don’t want to have to deal with the treatment all over again or something like that. Your perspective changed because it comes a part of your life, a lot of people really just want to give back and they want to help as much as possible.
Joe: Yes, exactly, because I guess life is never the same after cancer, right?
Alex: Absolutely. It’s completely different. There’s so much change, there’s so much thought process that goes into it. What do I want to do in the future now? Everything changed. You don’t see like as differently. There are a lot of clichés that go into it. Things like, do you know what? When things like this happens, life is so precious. Everyone is like, yes, that’s a cliché, but it’s true. I’m sure everyone can agree to that.
Joe: Exactly. Gabrielle, what about you, what does life look like for you now?
Gabrielle: My life has changed dramatically since the diagnosis day. That’s okay, I think it changed for the better and looking back, I think I’ve grown a lot from this experience. All the changes have been good and have been things that I’ve actually chosen to do. For example, I was heading to law school, or planning to head to law school in the future before I was diagnosed. Through the experience, I decided that that wasn’t for me and the lifestyle.
That just wasn’t what I wanted to do. I’m now in social work and able to work with the cancer population. Those are all choices that I’ve made that have made life so drastically different from when I was diagnosed, but for the better and that’s great. Still, today, I think I’m still changing my lifestyle a lot as I go because, like I said earlier, I don’t think cancer is done. Unfortunately, when you ring that bell or when treatment is over. I think I’m still learning and still discovering a lot of things about myself that makes life continuously change, which is what life is all about. Yes, life is definitely very different. I think all for the better, which is fun and encouraging to hear.
Joe: Yes, I think that is exactly one of the most powerful things that people want to hear. We touched on the fact that there are times when all of us feel lost and alone. I think it’s important for people at the start of the journey or during the journey to realise that there is life after cancer. It may be even a better place than where you’re at now. It’s just knowing that there is this light at the end of the tunnel, right?
Gabrielle: I was actually reflecting this week because my cancer experience has not been easy, like any cancer experience is. There’s been a lot of up and downs, especially when it comes to the psychological mental health aspects. I think that’s one of the most difficult aspects of my cancer experience. Then I came to wake up this week feeling really encouraged and for the first time, feeling like myself again.
I was really surprised, and it was a wonderful feeling because I never thought I’d really get back to that person and back to feeling this great about life. I did and it was lovely being able to wake up this morning and I have been trying to think, how can I capture that to give that hope to someone who’s newly diagnosed because you’re going to have hard times ahead. Look, this moment is coming eventually. The thing that brought me back to those mornings where there is a light at the end of the tunnel, which is really great.
Joe: Yes, absolutely. What about you, Alex, what was that moment like for you? I guess if you had a friend who just got diagnosed with cancer, what would you tell him or her about what’s coming that way and there is hope?
Alex: Yes, well, I think the first thing you have to say is, look, as long as it seems like this is going to be and as dark as it seems. The worst thing that you can picture, it’s going to get better. Regardless of that scenario, there’s always a silver lining when it comes to something like this. There are obviously going to be your dark days, there are going to be your bright days. Regardless of the scenario, it will get better in some aspect. You will get used to what’s going on.
You will have the support system, whether you want it or whether you don’t. Whether that comes in your family, whether that comes in the friends you have around you, whether that is, for us, YACC specifically, or whether that’s some type of support system that is a family of cancer thrivers around cancer survivors that understand exactly what you’re going through. There’s always a light at the end of the tunnel. Essentially, if it was someone who I knew, if it was one of my best friends, I’d say, listen, you already have me, personally, for whatever you need. I know exactly what I’ve gone through.
I know every cancer survivor’s experience is a little bit different. Everybody goes through something different, and there are a lot of similarities. A lot of the mental health aspects, the physical aspects are very similar. Whenever you need help, I’ll be there for you. At the end of the day, when you are saying, this is how long I have to do the treatment, if it comes back, then I have to go through it again, at the end of the day, you have your support system and it will get better. That’s the thing that I would like to tell that individual.
Joe: Fantastic, thank you so much, guys. Tell me about the podcast, how did it get started and how can someone find you?
Alex: Yes, so, Gabrielle, I’ll let you answer that one.
Gabrielle: So, the podcast was started by me. I did do almost a year of podcasting by myself. You can find all of those episodes. We didn’t delete them or anything. Then I got joined by Alex, so we’ve been co-hosting for about a year now, which is awesome. We’ve grown this podcast I think in great ways. The name of the podcast is Soar Above Cancer. That came about just because I was tired of just surviving through the experience.
I had done a lot of work around, how can I really create a life for myself and start really living and not just surviving. I thought that it was a great opportunity for me to get out there and share my story, which is as much therapeutic as it was to help people. I think it’s for both purposes. I just fell in love with the process and blogging and all of that. I really wanted to bring to people who are living through this experience, just tips and tricks and just our stories and the stories of others who come on the podcast, that can really make a difference in their day.
We try to make it weekly, so that people who are going through treatment can listen to it during their treatment days. Not too long because we understand that half of us, or probably more than half of us have chemo brain, so we can’t concentrate on anything for a long time. We really try to make it for people living with cancer, so that they can benefit from something for them.
Joe: That’s fantastic. Thank you so much for what you do, guys. I think that’s fantastic. That’s what gives people hope and understanding and inspiration to go on. Thanks so much for your time.
Gabrielle: Well, thanks for having us on.
Alex: Yes, thank you.