Beyond Brain Tumours

Practicing hope: A conversation on courage, connection, and resilience | Part 2

• Brain Tumour Foundation of Canada • Episode 11

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In this episode, we explore hope as more than just optimism- as a mindset that can be built, practiced, and sometimes rediscovered when everything feels like it’s falling apart. 

Join us for a heartfelt conversation with Ann, who shares strategies and insights from her journey as a relentless advocate for her daughter. From building partnerships to moving through advocacy, growth, and resilience, this conversation honours not just the successes but the doubts too- and invites listeners to find strength in both. 

For additional information, you may visit:  

Going for Hope: Strategies That Make it Possible to Persevere: Hovey, Ann

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

Speaker 1:

Welcome to Beyond Brain Tumors a podcast of inspiration, hope and support for the brain tumor community. I'm your host, ben Seewald, programs and Services Specialist at Brain Tumor Foundation of Canada. Join us for part two of our conversation with Anne Hovey author, speaker, facilitator, coach and, again, again, a mother as we navigate her commitment to successfully partnering with the medical team to achieve optimal results.

Speaker 1:

Thank you so much and this has been a terrific conversation so far and I really am looking forward to the second part of our conversation I am too, thank you so in your book you you talk a little bit about your lived experience doing the work as a caregiver and really investing in the partnership with your healthcare provider team and how that resulted in optimal or best case results. I'd love to hear more about your intentional and conscious alliance and how others could approach their journey in a similar way.

Speaker 2:

Great. This is one of my touchstones, because I credit two things to my daughter's exceptional recovery, and the first is to her for her amazing determination and perseverance. For her amazing determination and perseverance, we were blessed with therapists at Bloorview and one of them said to our nurse that she'd never worked with a three-year-old who was as motivated and determined as Kay. So Kay has fundamentally contributed to where she is today and how exceptional her recovery has been. But I will also tribute the outcome to the relationship I had, the quality of the working relationship I had with her healthcare team. I refer to them as partnerships and I didn't initially enter. When I came into the healthcare world for my daughter, I didn't initially consciously do anything. I was a deer in the headlights and I was literally just stepping through what I was being told to do.

Speaker 2:

But I have such an extensive amount of experience with teams. I've been a member, I've played as a teammate, I've coach a member. I've played as a teammate, I've coached teams, I've been a facilitator of different types of teams problem solving, process improvement, partnership development and I've also led teams respectful of what can be achieved, the results that can be attained when a group of people actively work together towards a common goal and I've seen exceptional results and, as you can appreciate, I absolutely wanted exceptional results for my child. So I started to, you know, slowly put the pieces of the puzzle together and realize, hmm, I'm not the leader of this team but, man, I'm going to do what I can to consciously work with them as critical teammates.

Speaker 2:

So it was a very significant thrust for me and I I told everybody on our team that they were instrumental to to the outcome of what we're doing and they they heard that more than once and I would share if I, if I had goals or dreams, or I you know, objectives for for my daughter, I made sure I shared those with our team and, thankfully, the, the people that we worked with, they worked with they, they, they came along with me and I'm not saying that everybody believed that my vision was, was, you know, was going to be the one that we landed on.

Speaker 2:

But I always felt like I was walking beside someone towards a goal and I had moments when I have a couple of examples of where the partnering did not go well and the outcome of that interaction was quite poor. I have a couple of examples of where the partnering did not go well and the outcome of that interaction was quite poor, but it is in the minority compared to what we experienced and otherwise we wouldn't be where you know. Kay wouldn't be where she is today. So partnering has been, and doing teamwork has been a critical part of our success.

Speaker 1:

Well, you shared that incredible story with me earlier about going back to the hospital and on rounds and having the healthcare team talk to you about how important it was that you built that relationship intentionally and with the point of achieving the optimal results. You want to share that.

Speaker 2:

It's great. No, I got the opportunity to speak to a grand rounds several years ago and eight of Kay's doctors, eight of the specialists that we had worked with, came into the room and I have never been more nervous, because the intention for that particular presentation was to utilize our story to hopefully get everybody in the room to the same place I was, which was parents are the most critical partner if you're striving for optimal results. That's my general gist of it. But coming out of the presentation, what was really important, my punchline I guess, so to speak, was that we had had an opportunity, they'd had an opportunity to voice. Prior to my actual speaking, we had another individual who was speaking to them and asked the question well, what do you need from parents? And the resounding answer was well, we need parents who are strong partners and advocates, which fed beautifully into my presentation, thankfully, woohoo. Which fed beautifully into my presentation, thankfully, woo-hoo. And at the end I said the thing that I need to share is I have a pretty neat skill set when it comes to teamwork and partnering, because I've developed that through my professional life and I've had some great success with partnering and teamwork. You know, getting teams to do the exceptional and I've risen at difficult moments in my professional life when there was screaming and unhappiness and very contentious people at the table, and I can stand up when someone else may not. But if you put me in front of a doctor who is, you know, putting their hand up to say, excuse me, I'm, you know, I'm not talking to you about that. Or if I'm meeting with a doctor who doesn't value me as that critical partner, even if I feel I have a valid point and a valid reason why I'm asking the question, I shut down. And I shut down because I've never been more vulnerable and I'm counting on that individual and they're basically telling me yeah, I don't, I don't need to talk to you anymore, I'm, you know, the interaction is finished.

Speaker 2:

So when I'm, when I was taught, when I was treated that way a couple times, I realized, well, where's my skill set, where's my skill set for stepping up when someone else doesn't like, no one else wants to? And my skill set was gone. It was, you know, I couldn't see it, I couldn't feel it, I was just totally overwhelmed. So what I've shared with the Grand Rounds was that you are the gatekeepers, the healthcare team are the gatekeepers to our ability to partner. So with their actions they either are enabling us to step into that role and become that strong partner or they disable it.

Speaker 2:

We're just extremely lucky and blessed that the majority of our healthcare team and the majority of my interactions with healthcare providers was I was viewed as a critical partner and as I got to learn how to step into it because you don't just get to the hospital and say, oh yeah, I know how to do this, you don't. You don't know how to do it and you don't want to step on anybody's toes. But when you're working with people who value what you bring to the table and they remember that you're the expert of your child and they acknowledge wow, that's really cool, what you're doing there to calm your daughter. When you're worked with that way, it's easier to grow into that strong, partnering and advocate role.

Speaker 1:

Wow, that's incredible guidance and such strength from you as well to realize that you weren't stepping into your kind of natural fit and natural role and to to shake that off and and to do that yeah, well, I'm just going to say to you that in those two moments with with two intense moments with um, health care providers, I didn't step up.

Speaker 2:

But that's that's how. That's how you learn what's critical. Right, because I saw I had so many examples of when the partnering went so beautifully and the outcome was so positive. It was like, well, why didn't I step up or why didn't I just say, hey, you need to listen to me in this moment because I'm saying something valid. But I didn't. And and that's that's what I was hopeful to get across at Grand Rounds and I was hopeful to get across last week when I was talking to the, the Children's Health Symposium is that we want to be that strong partner and advocate, but it's not our strengths that got us into this room, like that's not what brought us to this table, and so so we second guess ourselves, we second guess our own capacity to contribute. So that's where they need to be in an enabling role, play an enabling role to help us step into it.

Speaker 1:

Right. I love your reminder that you write in your book that you are worth the effort in resolving tension and conflict with your healthcare team. I mean other than getting a tattoo across your forehead. How can we all remind ourselves of this more regularly, that we are worth the effort?

Speaker 2:

You know that's, that is something that's that's very tough, and I think it's we all struggle with it, because I don't think any one of us truly loves the idea of conflict with someone, especially if we're relying on them to help ourselves or to help our child. So it's interesting because I've always told my kids that every time you practice it, like every time you practice the stepping up for yourself and saying, ok, you know this can work better and I'd like this to, I'd like us to have a better relationship and or I'd like to move past that little incident we had Every time you do that you realize it becomes a little bit easier, right, because you've reminded yourself, well, I'm worth the effort, yes, it's uncomfortable, yes, I don't want to have them yell at me, yes, but every time you do it, you realize it's kind of reinforcing that you're worth the effort. And I've always told my kids that and it's a reminder to myself that if I am interacting with an individual and something happens, and that event, whatever it is, is something that fundamentally impacts all of our interactions going forward, then I have to address it, especially, obviously, if we're talking about oh well, someone painted the color of my living room walls the wrong shade of blue, that's one thing. But if it's a life-altering thing with a child or with a loved one, and if you're interacting with someone who you have this conflict with and it's taking up space, this conflict with and it's taking up space If it's taking up space, it means that that energy isn't available for what you can do to help your child or to help your loved one or to help yourself move through it in a healthier way. So I've always told them, if they can let things roll off their shoulders and say you know what, they were just having a bad day things roll off their shoulders and say you know what? We just they were just having a bad day, that you know and and and then truly release it and not have it impact any other interactions, then fine, don't, don't, you don't need a conversation. But if it's something that is in your way, of all the different conversations you need to have with that person, then it has to be addressed.

Speaker 2:

And I will say that what I was very pleasantly surprised I had had two big conversations that were quite serious and I was quite angry and I was so amazed at how well it went because the person I spoke to didn't become defensive. They were open. And, yes, did I think about how I needed to say it? That was respectful? Yes, I did. Did I think about how I needed to say it so that if it was being said to me, I'd be more likely to accept it? Yes, I went through all that because I was really very nervous about having the conversation, but I was angry enough that I knew I had to have it. And in both cases, in these big moments, it went beautifully because the person who was receiving it didn't become defensive. They didn't say they didn't take it personally, they didn't. They just they empathize. Well, yeah, I can see why you'd be angry.

Speaker 2:

And what happens is when you come from the quality world, which is where I've come from, there's a thing, there's a sort of a wisdom around customer complaints. If you resolve a customer complaint to the satisfaction of both parties, when you get to the other side of it, that customer is more likely to recommend you, right? So our relationship is even better when you work through the conflict because you're like okay, good, we can have these tough conversations, we can move through that, we can. You know, it's a, it's a, it's a richer relationship. So it is uncomfortable. I totally empathize with people who don't want to do it because it you know, I could. Before both of them I could feel my stomach going and it's horrible. But we are worth the effort and it does get easier. Every time you take a step it does get easier.

Speaker 1:

Yeah, I love that. That's reminds me of a story that I heard just really quickly and about the, the adage that what doesn't kill you makes you stronger, and so kind of. There's one perspective on that that. Like no, actually it makes you much, much weaker. If something almost kills you, then it actually makes you much, much weaker. But I read a story. Then it actually makes you much, much weaker.

Speaker 1:

But I read a story about a father who was having this conversation with his son and I don't know if it was actually a conversation or if it was just created for to make the point Perfect, Perfect, Perfect, Exactly. And so they talk about a bookshelf and if one of the shelves breaks, then, yes, absolutely, At that point it is much weaker. But in the fixing of the shelf then you kind of brace it and you glue it and you heal it and through that process, the point at which that bookshelf previously had broken is actually stronger than any other point in the bookshelf, than any other point in the bookshelf. And so I think that's what that conversation means. Is that or that that phrase means? Is that through the process of healing, you do become stronger at that point and in that element of your life?

Speaker 2:

Yeah, I think it's interesting because I just had a conversation about that statement, about you know, it doesn't kill you, serves to strengthen you, and that's. It's a very uncomfortable statement for anybody who's going. You're like really, oh, okay, um, but as much as I, as much as when someone says that to me, I don't sort of go Ooh ouch. You know, I think one of the ways you get stronger is and one of the blessings of the journey that I've been on is I'm clearer on what's really important. I am more careful to make sure I tell people that I love them when I, when I get a chance, and to tell them what they mean to me and how special they are, and I don't sweat so much of the small stuff and those are gifts, those are gifts. So there are ways I would certainly say my understanding about things has strengthened. Yeah, let me put it that way.

Speaker 2:

Yeah, I love it, I'm not sure, I always feel stronger, that is for sure.

Speaker 1:

No, I yeah. I think that's a lot of being human. So, yeah, I agree, all right. Well, there's one aspect that I do want to ask. This last question, and for many of you you may not know that Anne is also a brain tumor survivor. So what has been the biggest difference between being a caregiver to your child versus navigating your own brain tumor diagnosis, in terms of finding hope?

Speaker 2:

Yeah, Well, I will first of all say that hope is critical in both areas, like it's been again. I meant it when I said it's the fuel for anything positive I've ever done. Hope was the fuel. Being diagnosed was very scary and overwhelming, but I got diagnosed sort of five years into Kay's journey, and so the one thing that I wasn't overwhelmed by at that point during my own diagnosis was I had learned something about navigating the healthcare environment and had a better understanding of how things worked, and you know just the way things were conducted, so that made it a bit easier. The other thing that helped me was that I had watched this beautiful soul of mine, my daughter that is. I'd watched her cope with grace through very, very difficult times, and so she was my motivation, to you know, to get through. And I believe I think I told you that I had a hope rock that I took into the radiation machine with my with me, and I was in there for about two and a half hours and it was very stressful. But I remember holding my hope rock and saying if Kay can manage what she's been through, then I can at least do this. So she was certainly a light for me to go towards and to think, okay, I can get through this, I can get through this. So, I will admit, you're very afraid and concerned about what is going to be the outcome and where am I going to end up.

Speaker 2:

Right, I will say, though, that advocating for my daughter just was harder, and it's harder for me. Um, making decisions for another person who was so little and so young felt the weight of those decisions felt, you know, bigger. Making a decision for myself is well, okay, you have, you made the decision, so just suck it up. But it's different. When I was making it for her, the concern related to her potential was never. It was 24-7. I wasn't worried about my potential so much. I mean I, you know, at that point in time, it had several decades on this earth, and there was just more.

Speaker 2:

I also know, okay, I believed in the power of hope, and I can control my own hopefulness, but I, you know, I how could I control my, my daughters? How could I make sure that she was in as hopeful a place as I wanted her to be for the best outcomes? And it's one thing to be a three-year-old and having these conversations, and it's another thing to be a 15-year-old or a 12-year-old hearing that, oh, we have to start chemo again. You know these are. That's a very different place. And being so sensitive to oh my gosh, how do I help her feel hopeful that she's going to be okay? So navigating them was it did feel quite different. Still, fear, fear. Fear was still evident in both Absolutely, and hope was critical in both but but. But the weight of being being the advocate for someone you love is really quite overwhelming I cannot answer your question.

Speaker 1:

Well, I mean, yes, I think again, I think we could have a whole podcast just on that question specifically. And I think that, um, absolutely now, I mean so I had I was diagnosed with my brain tumor when I was 18. And so kind of just went through the process and kind of you know, interesting that I never, kind of never really believed that it would end in anything other than recovery. So I mean again, I think I really leaned into that hope. Maybe it was youthful naivety, but I can't imagine what my parents, for example, were going through during my 12 hour brain tumor operation, right, so I kind of slept through the whole thing, that's what I say. They were in the waiting room, kind of not knowing who would come out of that surgery waiting room, kind of not knowing who would come out of that surgery. And so that now, as in my role as a parent, I cannot imagine the emotional toll, but also just kind of the worry and the unknown, the fear of the unknown, what that would do.

Speaker 2:

Well, and as a parent, you know that, like, our greatest hopes are for our kids yes, like it's, it's.

Speaker 2:

It's why the journey is, as an advocate, is so foreign to to consider entering, because you know, you, you, you are clear that when you're, you know, going to have a child, you're clear, well, you know there's going to be hiccups, you know they're going to fall down on their bike and skin their knee and I'm going to have to, you know, wash it and put a bandaid on and, you know, give kisses, and then, oh, there's going to be a heartbreak and and, oh, there might be a failed test here or there. You know, and you feel, well, I've got, I've got the skillset to help coach them through it. And then you land in this arena and you are crystal clear that you are lacking the knowledge of what do I do and how do I do it and how do I and you're also, you know, as we stand in front of health specialists, we know that we are not the answer and that's a that's a tough pill to swallow right To not be the answer for your own child.

Speaker 2:

Yeah, yeah, to not be the answer for your own child, to to be so reliant, especially when you first start the journey. We ended up with brilliant care providers, health care providers, but to know that you're relying on people you, you know. You don't even know who you're running down the field with, right, yeah, you know who's beside me, who are my allies? It is, it is, and it's just it is, it is and it's just well.

Speaker 2:

As you said earlier when we were talking earlier at one point, that when it you know, making the decision for your child, when you don't know well, would they make this decision, decision, would they want to do this, would they? You know, we had some tough moments where I was pretty sure that if something happened, kay and I would be on opposing sides of what we were going to do. And I can't tell you how many sleepless nights I had about that because I was worried about the long-term. But of course, you know, at a certain age you're not thinking long-term. You're just like I want this done and I'm like, oh my, you know, there's such big, big moments.

Speaker 1:

Yeah, wow, this was an incredible conversation. I can't thank you enough. This is just so wonderful. Do you have any final advice for either parents currently going through this journey with their kids or individuals going through their own brain tumor treatment or diagnosis at this moment in time?

Speaker 2:

I think you know I'll end it with hope, because I learned prior to diagnosis that I had a situation where I was being very sort of cautiously optimistic about something and I was afraid to be too hopeful because I thought, well, I'm going to be devastated if this doesn't happen. I'm going to be too hopeful because I thought, well, I'm going to be devastated if this doesn't happen. I'm going to be devastated. And then I had a chance to talk about it with a dear friend and I said you know, I'm going to be devastated regardless of whether or not I was hopeful along the way. I'd be devastated by a negative outcome. I'd be devastated if I was hopeful and being positive and I'd be devastated if I wasn't hopeful.

Speaker 2:

The thing about being hopeful along the way is that you're more likely to take action that opens up the better outcome, because you're hopeful. It'll make a difference. We can try this and we can do that. We can go over here and we can, and so we have nothing to lose by being hopeful, doesn't, you know? Doesn't mean that we're going to get to the other side and everything's going to be perfect, but because you were hopeful, you took steps along the way that facilitated it being the best it could be. I guess is is my take on it.

Speaker 1:

That's a terrific take. I love that.

Speaker 2:

Well, thank you.

Speaker 1:

Yeah.

Speaker 2:

Well, I thoroughly enjoyed the conversation.

Speaker 1:

And I think that absolutely comes through loud and clear and it was a terrific conversation and so thank you. Thank you so much, anne, for joining us and sharing your story, your journey with your daughter and your own journey with the brain tumor community throughout Canada. This was a really special and I appreciate you so much. You can find a copy of Anne's incredible book going for hope strategies that make it possible to persevere by Anne Hovey at your local bookstore or Amazon or wherever you get your books, and in a world where the challenges of brain tumor diagnosis can be devastating, anne Hovey is standing with Brain Tumor Foundation of Canada as a beacon of hope and transformation. Thank you so much for joining us and stay strong.

Speaker 2:

Thank you very much for having me. It was a sincere honor.