Beyond Brain Tumours

Balancing care, recovery, and school: How support, compassion & advocacy pave the way | Part 2

• Episode 10

Share episode

Welcome back, everyone!  

In this episode, our host Ben Seewald chats with Patrick, a Registered Nurse and a brain tumour survivor. Having just started nursing school, Patrick shared his experiences facing a brain tumour as a young adult and balancing care, recovery and coursework. Together, they discuss Patrick’s journey of strength and resilience and the importance of kindness and patient advocacy.  

In part 2, Patrick dives into the heart of his support network- his family and friends, and the important role they played in supporting him through treatment, recovery and school. Patrick also discusses patient advocacy and what it means to him. Tune in for an open conversation about compassion, community and advocacy. 

For additional information, you may visit:  

Medical alert bracelets: MedicAlert Foundation Canada | We Speak When You Can't 

Support groups: Support Groups - Brain Tumour Foundation of Canada 

Advocating for yourself: Advocating for Yourself - Brain Tumour Foundation of Canada  

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

Ben Seewald:

Okay, welcome back to part two of Beyond Brain Tumorous a podcast of inspiration, hope and support for the brain tumor community. I'm your host, Ben Seewald, fund development specialist at Brain Tumour Foundation of Canada, in this part two of our conversation with Patrick Belek, a registered nurse with extensive background in critical care and education. Patrick is currently working on the intensive care unit at Health Sciences North in Sudbury, Ontario. Over the next 20 minutes, we'll be discussing the role of solid support systems and networks while navigating a brain tumour, the power of friends and family, and Patrick's thoughts on patient advocacy as a patient, but also as a health-care provider on patient advocacy as a patient, but also as a healthcare provider. So, Patrick, we've heard a little bit about your experience and your journey with Kevin.

Patrick Bélec:

Yes.

Patrick Bélec:

How important were your friends and family during your diagnosis and treatment. My experience through healthcare as a patient would have been quite difficult, quite a bit more difficult without them um, from my friends supporting me in school. I had some friends that would take notes for me in school so I could keep up with work, with schoolwork. I had my friends in residence my roommate who made me soup one day when I was just having an emotional breakdown because of the cyst.

Patrick Bélec:

Before my second surgery, I had my high school friends that would come visit me at my parents' place and just an essential support group in various aspects of my life. After my second surgery, I had decided to create a Facebook group, a closed Facebook group, where I could invite my friends and family and my parents' friends so they could stay updated with what I was going, instead of my dad having to text 50 of my friends then having to answer 50 of those messages. It was easier to post updates there and then everyone could see it, and it was a great way to get support without overwhelming my poor parents great way to get support without overwhelming my poor parents and your, your, your friend network.

Ben Seewald:

Did you really kind of lean in and allow it, allowed you to kind of share jokes and kind of lean into your humour and that approach?

Patrick Bélec:

absolutely like. My friends knew who kevin was when I referred to him. Uh, they like. And my really good friends I'm thinking of three right now were comfortable enough to make jokes about, like, oh you got, you got a bad grain on your test must have been kevin. I'm like yes, even after the acute phase, um, and still, to this day I have. I'm very comfortable with joking about my brain tumour, especially if the intention behind is humor. There is the bad intentions, but I haven't had experiences like that. My friends really kind of boosted me up when I needed it the most, but the main support and the main advocates were my parents.

Ben Seewald:

And you shared a little bit in part one of this interview just how connected your parents were and supportive, both kind of making sure that you got to your medical appointments but also making sure that you got a ride home from university if you needed it. But just share a little bit more as to the depth and breadth of your parents' involvement during your treatment.

Patrick Bélec:

Well, I could write like 40 page essay on the impact that my parents had. It's hard to really simplify it or condense it into a few minutes, but I would not have been diagnosed as early if it weren't for my parents. I wouldn't have had access to treatments, or to the best treatment if it weren't for my parents. Uh, they complemented each other and still do to this day. They compliment each other so well and they each brought their strength to the my experience as a patient. I had my mom, who was the mama bear that would not be afraid to talk to the doctors and really say, like you are going to listen to us, here is what's going on. And she had. Her, she's a teacher, so I I heard her teacher voice quite a few times and she, she has a background in science, which does help her. She, she had that aspect.

Patrick Bélec:

My dad had the other aspect of organizing transport, organizing hotel, making sure that we, we had everything that we needed. He, he would drive. He would drive like 30 minutes to get me a smoothie from Tim Hortons and it was like a specific smoothie made with ice cream, but not all the Tim Hortons had ice cream, so it was just this one and it was the best part of my day in the hospital. But he would do that. Uh, my mom was a little more reasonable in the way of like, no, drink your apple juice. And I'm like, no, I really, really want this movie. Um, and and, again, it was those little things and they add up and my dad supported my mom and my mom supported me. So it was a great chain of kind of support and I could not be where I am today without them, as open or comfortable without them.

Ben Seewald:

Yeah, it sounds like it allowed you to focus on your recovery and allowed you to focus on um kind of what was happening in your own head and without having to work at worry about all the logistics outside of things.

Patrick Bélec:

So absolutely, and there were times where I wasn't able to advocate for myself. After a pretty serious brain surgery you're tired, you're not sleeping, you're not eating well, when I couldn't speak and they were in my voice when I thought I knew better. And they actually did know better, like they knew the reality of how, how this could have affected me. And I'm kind of glad in one way that it happened to me and not to them, because I knew how it felt. It was easy for me.

Patrick Bélec:

I find sometimes illnesses are harder for family members because they don't know how the person's feeling. They can have really good guesses, but knowing exactly how they feel and knowing sometimes it's harder for them because they feel powerless. And I see it with my patients and their family members. The family members want to do something, they want to help. No-transcript family members can do, and there's a limit to what we can do as healthcare professionals too. It's it. It's important to recognize that kind of limit, because if my mom would have been allowed, she would have done the surgery herself. Like it's something that I've seen so many family members struggle with and being told like I can see you're wanting to help, but there's not much we can do right now. Waiting sometimes is the best thing we can do, and that's the reality of it.

Ben Seewald:

So can you identify some of the support systems that help you cope with the stress of being a student and a patient at the same time?

Patrick Bélec:

Yeah. So again, mostly my friends, my teachers too, were absolutely amazing. They gave me extensions. I had.

Patrick Bélec:

I had one teacher, one teacher, her class finished the first semester and I like I still had an essay that was due. She's like it's okay, take your time, I can give you an extension. And again I say, would have been done in due in December with when the class ended, and then I still hadn't done it in April. And she's like I need to submit the grades. So you can either like just just let let go of the essay and you can join the class next year, or you can submit the essay and whatever the grade is, it's going to be a 10. And I was like I'm not doing that class again.

Patrick Bélec:

It was one of those classes that the teacher was amazing but the subject was just dry as a bone. And I'm like, yeah, I'm not doing that. So I just did that essay one day and sent it to her. And I'm like, yeah, I'm not doing that. So I just did that essay in one day and sent it to her and I'm like, okay, I'm done with that. Like it was a six month long extension for a university essay. Like it's not often you'll hear that in post-secondary.

Patrick Bélec:

So that was a huge part of it and in the years after too, because yes, there's the acute phase but then there's the kind of long-term recovery, especially with brain tumours, like it's going to affect you for a long time, if not all your life, like to a certain point it still affects me. To this day I'm just able to kind of manage how it affects me and I had extensions for other work too in my second, third, fourth and fifth year in the university and I got the support I needed. Yes, I didn't need as much support. And there's a year I really felt the kind of drop in support and that's when I started consulting mental health professionals.

Patrick Bélec:

Because, again, you play with your brain, you play with hormones, period, your mental health is going to be affected in some way. And there's a limit to what my friends can do and there's a limit to what my family can do and there's a limit to what I feel comfortable sharing to Like I shared quite a bit with my parents, but there's a few bits that I didn't want to necessarily share with them. So I had my, my few designated friends that I would share that with, but they have a limit in how they can help me. So I consulted awesome health healthcare professional and a mental health professional, and that's that was the best thing for me at that time. So it's not just friends, family, but it's also actual professionals that actually can help you.

Ben Seewald:

So, if you're comfortable, could you share a little bit about the impact that your brain tumor had on your social life, outside of the medical diagnosis?

Patrick Bélec:

It kind of decreased it a little bit, decreased the quantity but improved the quality, if that makes sense. The friends I had were quality friends. I didn't necessarily have the energy to go out and party and I couldn't drink alcohol because of my medications and it's just not recommended, especially after this kind of surgery and those kinds of treatments, and it wouldn't. I wouldn't feel good necessarily when drinking alcohol. I wouldn't feel good necessarily when drinking alcohol. It limited the environment I could socialize in.

Patrick Bélec:

The loud noises would really kind of drain me quite a bit quicker. So I couldn't necessarily go out to a bar or a pub or there's a little kind of pub on campus and it gets very loud very quickly when there's a lot of people in there and I had trouble concentrating with all the noise and it just it affected me in that part. I also kind of had a decrease in the amount of socialization but an increase in the quality when I did socialize. Like instead of socializing every day, I had my good moments every so often where I had a really good hangout with my friends. So really quality over quantity.

Ben Seewald:

Amazing. So let's switch a little bit to advocacy and patient advocacy and self-advocacy. So how did you advocate for yourself during the treatment and did your formal education and training help through the process?

Patrick Bélec:

During the treatments. The formal education that I got in school didn't necessarily help me that much, other than increase the curiosity I had because I was going into the field. I had just gone through a month and a half of school before I got my diagnosis and the classes at that point are very introductory. It's not the, the heavy subjects, medical information, that we learn later in the later in the, the bachelor program, but it it helped me be curious and want to learn.

Patrick Bélec:

One other thing that I found really helped and I might be biased because, again, I am a nurse knowing my medication list, and not only the medications but the doses and how often I took them, and knowing why I took them, really, really, really helps, and I encourage everyone that's listening make yourself a list of the name, the dose and how often you're taking your medications and then why you're taking that medication and have it on you.

Patrick Bélec:

Take a picture, have a note on your phone with the dose, the name, all of that, why you're taking it, and share it with someone that you trust, whether it's a spouse, a parent. My mom still has a list of my updated medications on her phone in case something happens to me and I'm not able to communicate. I got a medic alert necklace and it's a specific website where you can update your own information. It's not a subscription fee, it's really. I have my medic alert necklace, or a medical alert necklace, and you go onto a website and it has all the updated information and all the information you want to share and it goes in detail into, like blood type, organ donation, medication, surgeries, doctors. You update that information and you're able to just give it to providers and say I don't really know much of my medication, but my list is on here.

Ben Seewald:

That's amazing advice and I think in this day and age, information is power and that is incredible information to have in those interactions hour.

Patrick Bélec:

And that is incredible information to have in those interactions. Yeah, yeah, I find them. I've recommended quite a few patients to take notes on their phones with their medications and it helps us as healthcare providers. Even if it's not necessarily updated, it gives us an idea of what the patient takes and it helps us kind of. Okay, that patient is on six blood pressure pills. We'll make sure that we kind of continue those blood pressure pills so they don't become seriously hypertensive while they're in the hospital.

Ben Seewald:

So I understand that you're a really strong advocate and public speaker on this topic, your brain tumour specifically. Could you tell us a little bit about where you've spoken and why that's so important to you?

Patrick Bélec:

Yeah, so I kind of the very, very first presentation I did was actually instead of an essay for one of my class and it was a three hour long presentation where I talked mostly about the importance of communication and healthcare and how the little things that do matter, and that was back in 2013. And I had pretty much stopped really doing that until 2023, where I saw my high school had a kind of healthcare class where they learn different things in healthcare, and I sent an email out to the teacher, who was actually one of my friends, older sister, and I said, hey, would you be interested in me coming over and presenting to your class, talk about kind of what it is to be a patient in the hospital and talk a bit about the nursing profession? And she's like sure, and then last year is when, in 2024, it's when it really kind of took off I was asked to speak at the Northern Med Talks hosted by Science North, the local science center in Sudbury, and it's 10 healthcare professionals that have 10 minutes each and over those 10 minutes they speak about a topic that they're passionate about. It can be nurses, physios, midwives, nurses, physios, midwives, doctors of all kinds of specialties and patients. And I spoke about my experience as a brain tumor survivor and as a nurse and the importance that healthcare professionals and just everyday people have in everyone's life and just everyday people have in everyone's life.

Patrick Bélec:

I spoke about one of a waitress at Cora. Her name was Jazzy and we went there in between an appointment and the first week I was diagnosed and she just made me laugh about something I said and it kind of brightened my day. Like it was a kind of gloomy day, I wasn't feeling good and she made me laugh, she made me feel good and it kind of brightened my day. Like it was a kind of gloomy day, I wasn't feeling good and she made me laugh, she made me feel good. She took the time to actually just connect with us a little bit and we left and it was a good experience for my parents and I and we went back and we saw her and we explained like the last time you saw me I was like I had just received a diagnosis of a brain tumour and you actually made me feel good and happy that day. And, uh, every so often when we'd go back to Ottawa for either surgeries or follow-ups, we'd stop at Cora and go say hi to Jazzy and she like she she no longer works there, but Jazzy had a big impact on me at that point and still, um, like I talk about her because she was a waitress, she wasn't a nurse, she wasn't a doctor, she, she wasn't even in the health care field. But she had a positive impact on day where I felt like crap. And that is what's really important how your behaviors affect others. And it doesn't take much sometime to really kind of brighten someone's day.

Patrick Bélec:

So I spoke about that on the Met Talk. And then I reached out to the Canadian Association of Neuroscience Nurses, can, because I saw they were looking for abstracts for their national conference and I said would you take story of a patient from the point of view of a nurse? And they said absolutely so. I did a 45 minute long professional to national Canadian neuroscience nurses that knew quite a bit more than me when it came to neuroscience. Again, I'm in critical care. Yes, we have some neuroscience, but nothing to the extent of those nurses.

Patrick Bélec:

And then I was invited to speak at the International Society of Pediatric Neurosurgery and it sounds really fancy.

Patrick Bélec:

It wasn't that fancy, it was the nursing symposium. We had about 30 people in the room but again, I delivered a very similar presentation and got good feedback. It's important for healthcare professionals to know that they have a huge impact. We won't remember your names, we won't remember that you inserted an IV really, really well, but we'll remember that you were kind to us or you ignored us when we asked something for pain, or maybe you didn't explain that we weren't you us, or you ignored us when we asked something for pain, or maybe you didn't explain that we weren't you, you just ignored us, or we'll remember those moments and not the the minute stuff. Then, back in December, I applied. I was invited by the World Federation of Neuroscience Nurses president to apply for their quadrennial congress and I applied in December and I can confirm and share with you guys that I got accepted. And in July of 2025, I will be heading to Darwin to share my story from again, the point of view of a nurse my patient experience with neuroscience nurses from across the world.

Ben Seewald:

That's incredible to have the opportunity to speak in Australia.

Patrick Bélec:

Absolutely.

Ben Seewald:

Wow. So what I hear from you is it's about kind of sharing how you make people feel is the most important thing. If you could wave a magic wand on the healthcare industry as a patient and change one thing, what would it be?

Patrick Bélec:

Oh, I like that question.

Ben Seewald:

It's quite difficult to answer because I have the patient and nurses side and you can answer as a patient and then we can do another answer as a as a nurse.

Patrick Bélec:

Yeah, absolutely so as a patient. Decreasing wait times and improving the financial support whether it's universal pharmacare where medications everywhere in Canada are covered Just that would be absolutely amazing. I know there's a few programs that kind of cover in Ontario at least cover anyone under 25 and the elderly, but people in the middle, if they don't have insurance they will have to pay out of pocket for their medications. So increasing the financial assistance and financial support or decreasing the fees to zero would be my magic wand wave From a nursing standpoint decreasing or not even decreasing, stopping nursing shortages and decreasing nurse-patient ratios.

Patrick Bélec:

Decreasing nurse-patient ratios it's very difficult to take care of a patient appropriately when you have eight other patients that are waiting for you, and it's something that's been quite a bit more prevalent during COVID and even after COVID for a bit. But decreasing nurse ratios improve outcomes and there's there's many, many, many studies that show that. And again, if your nurse is able to concentrate on you and someone else which again in the intensive care unit is is possible, but on the on the floors, on the on the wards, it's not possible. If you're able to have a nurse that has more time for you, your experience in healthcare will be better. Your recovery is going to be better, your care is going to be better, the support you have in the hospital will be better. It's something very, very simple.

Patrick Bélec:

But again finances come into it and like it would cost a lot. Nurses are not cheap professionals. To increase by many, many, many numbers it costs a lot to the healthcare system. But there's also I believe there's the point also of improving patient care will ultimately decrease expenses. So the kind of weight of the benefits and the risks is a little subjective to me there's a lot that I don't know when it comes to that objective. To me there's a lot that I don't know when it comes to that. But decreasing nurse patient ratios would be a top one on my list.

Ben Seewald:

Well, and how far upstream do you go to try and solve the issue before it becomes a problem? Right, exactly, yeah.

Patrick Bélec:

And that's something specific to Canada. I know I would have different one waves if it were in Europe or in the States. I know if I would have been in the States, my parent would have probably had to sell their house and I would have had to sell a kidney at the same time, they removed my brain tumour to afford for my to pay for my surgeries. Or maybe I would have waited even longer to get diagnosed because I didn't want to incur the fees, which is something that does happen, unfortunately.

Ben Seewald:

Yeah, so maybe we'll kind of wrap things up a little bit. Do you have any final advice for those currently going through their brain tumour treatment or diagnosis?

Patrick Bélec:

Seek support where you can. I know that not everyone has been as lucky as me when it comes to support and depending on where you are in life, generally the support will be different. The support for a child will be different than a support for an adult and will be different than support for an elderly. Seek support where you can Ask for help, and one place I found that was very useful too is the brain tumor support groups, whether it's virtual or in person. I'm now the convener for the Sudbury Brain Tumour Sport Group and it's been an immense opportunity to meet people that have gone through similar things. Like I knew one person that had gone through brain tumour journey growing up and she didn't really talk about it that much, so in my head I didn't really know anyone that had gone through everything I had gone through and meeting other people and, like through the brain tumour support group, I've met absolutely amazing people, including now like my best friend who was diagnosed around the same age as me Again, different tumor, but similar impacts on our lives, but similar impacts on our lives and we bonded very quickly and we've just become great friends.

Patrick Bélec:

A few last recommendations I would have for everyone Know your medications. Know the name, the dose and how often you take it, why you're taking it. One thing I found useful and I heard it from my mom, so it's a recommendation from my mom Change your ringtone After an acute event like this, and she is saying it from the point of view of um, a caregiver. Change your ringtone because every time that loved one will call you, you will expect the worst and your brain will go back into that place of of darkness, of bad times well, just trauma yeah, yeah so that will trigger your trauma response.

Patrick Bélec:

Oh yeah, what an incredible piece of advice and for patients, changing your ringtone will get you out of that. Oh that that might be the doctor, or oh, what's going on like change your ringtone it's. It's a little thing, but it's going to help you.

Ben Seewald:

Well, that's a really good piece of advice, I think. Wow, Patrick, thank you so much for joining us for both parts part one and part two of this episode of Beyond brain tumours podcast and for sharing your story with the brain tumour community throughout Canada.

Patrick Bélec:

This was a really special conversation.

Ben Seewald:

I'm really appreciative to having been asked to come on. In a world where the challenges of a brain tumour diagnosis can be devastating, Patrick is standing with Brain Tumour Foundation of Canada as a beacon of hope and transformation. Thank you for joining us on this conversation and listening to us through the Beyond Brain Tumours podcast. I hope you all stay strong. Thanks very much, Patrick. Thank you.