Latest / Amplify: A Podcast Powered by Patient Voice Partners / Two Steps Forward: Living, Advocating, and Rebuilding After a Brain Tumor with Claire Snyman

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Two Steps Forward: Living, Advocating, and Rebuilding After a Brain Tumor with Claire Snyman · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_01: Welcome to Amplify, Elevating Patient Voices, a podcast empowered by Patient Voice Partners, where real stories spark old conversations.
• 0:11
  SPEAKER_01: I'm Ursula Mann.
• 0:12
  SPEAKER_03: And I'm Brent McCordy.
• 0:14
  SPEAKER_03: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  SPEAKER_01: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:33
  SPEAKER_02: Hi, I'm here today with my co-host Brent Cordy.
• 0:36
  SPEAKER_02: Brent, how are you doing today?
• 0:38
  SPEAKER_04: I'm doing great, Ursula.
• 0:39
  SPEAKER_04: How are you doing?
• 0:40
  SPEAKER_02: I'm good.
• 0:40
  SPEAKER_02: I'm excited for today's show.
• 0:42
  SPEAKER_02: We're going to be talking to Claire Snyman today.
• 0:44
  SPEAKER_02: And she had a personal experience with a brain tumor.
• 0:48
  SPEAKER_02: Brent, what comes to mind when you are thinking about today's show and even the words brain tumor?
• 0:52
  SPEAKER_04: First of all, I get a little bit scared.
• 0:55
  SPEAKER_04: Like it's a scary word to hear, and it'll be interesting to talk to Claire about that.
• 0:59
  SPEAKER_04: But then just also, what does that mean?
• 1:01
  SPEAKER_04: What is that journey like?
• 1:02
  SPEAKER_04: And then yeah, I think it's scary for a lot of people when they think about the implications down the road.
• 1:07
  SPEAKER_04: What does that mean?
• 1:08
  SPEAKER_04: What does the future look like?
• 1:09
  SPEAKER_04: So I'm really excited to talk to Claire about that.
• 1:11
  SPEAKER_02: She's an amazing person.
• 1:12
  SPEAKER_02: It was love at first sight when I met her.
• 1:14
  SPEAKER_02: Just really dynamic and so fascinating.
• 1:17
  SPEAKER_02: And I'm inspired every time we chat.
• 1:19
  SPEAKER_02: I learned something a little bit different, either about her experience or what she's doing as a patient and experience and engagement strategist, as an author, blogger, advocate, and also everything she does on the data front.
• 1:32
  SPEAKER_02: She does a lot of advocacy around helping people better understand how to improve patient experience, care and information, and embedding what matters most to people across healthcare.
• 1:43
  SPEAKER_02: What really struck me, and I've never asked her this question, was even when you hear those words, brain tumor, because I know there's a large percentage of people, it could be cancer, it could not be cancer.
• 1:54
  SPEAKER_02: But to your point, Brett, there are significant experiences that people have neurologically either way, because you have tissues pushing out of their tissues, which causes problems.
• 2:06
  SPEAKER_02: For me personally, every time I think of the brain, when you start to not being able to trust your brain, so to speak, I know how scary that can be.
• 2:13
  SPEAKER_02: And I often hear people talk about the fear, even when we think about other neurological conditions.
• 2:19
  SPEAKER_02: So I'm interested to dive into this.
• 2:22
  SPEAKER_02: What are your thoughts on the data front and people moving forward and being able to share and access their data, brain and otherwise?
• 2:28
  SPEAKER_04: I think it's critical for you to take ownership of your care and both yourself and your loved ones and your caregivers that can help take care of you to have access to as much data as possible.
• 2:39
  SPEAKER_04: And in some cases, and I think we'll hear from Claire too, everyone has different levels of expertise and when it involves you, and especially when it involves your brain.
• 2:47
  SPEAKER_04: But I was actually speaking with a friend on the weekend about he'd had a stroke and the amount of information that he wanted to know about how did this happen?
• 2:56
  SPEAKER_04: What was my background?
• 2:57
  SPEAKER_04: What could have led to this, and just trying to understand that and also what the future care is critical.
• 3:02
  SPEAKER_04: So I think there's that portion.
• 3:04
  SPEAKER_04: I think there's other components that maybe we'll get into the discussion with Claire on the benefits of access to broader, like how do we collectively within Canada globally use health data to benefit all of us going forward.
• 3:17
  SPEAKER_02: I like that you gave me air quotes.
• 3:18
  SPEAKER_02: So you don't mean you and me, but you clarified we collectively got it.
• 3:22
  SPEAKER_02: It's all of us.
• 3:22
  SPEAKER_02: We're all in this.
• 3:23
  SPEAKER_02: Very cool.
• 3:24
  SPEAKER_02: I think that's so important with regards to the data and information for patients.
• 3:29
  SPEAKER_02: I've often heard people say they need it when they need it, and that might not be the initial time it's presented to them because they're overwhelmed in that moment and can't absorb it.
• 3:38
  SPEAKER_02: And can they reaccess it in the format that they want it when they need it?
• 3:42
  SPEAKER_02: I value that caregivers play an active place in this role too, because they might pick up information when they're with the person experiencing it that's so important.
• 3:50
  SPEAKER_02: So I'm thinking of your friend Brent, and I hope recovery is as good as it possibly can be.
• 3:55
  SPEAKER_02: Thanks for sharing that.
• 3:56
  SPEAKER_02: I'm excited to dive in and welcome Claire.
• 3:59
  SPEAKER_02: One of the things that I often think about when we're chatting is her thoughtfulness towards increasing communication and collaboration and really how life became unexpected as a patient.
• 4:10
  SPEAKER_02: I can understand that and really the change that happened.
• 4:14
  SPEAKER_02: So, Claire, welcome to the show, Amplify.
• 4:17
  SPEAKER_02: We're delighted to have you here today.
• 4:19
  SPEAKER_00: Hi, everyone.
• 4:20
  SPEAKER_00: Thank you so much for having me here today.
• 4:21
  SPEAKER_00: I'm excited to chat.
• 4:23
  SPEAKER_02: Claire, can you take us back to life before everything happened as a patient?
• 4:28
  SPEAKER_02: What was going on?
• 4:29
  SPEAKER_02: I'm trying to think that was life before 2010.
• 4:32
  SPEAKER_00: And I can always remember because our son was four years old.
• 4:35
  SPEAKER_00: For any of you who have a four-year-old son, you know what it's like.
• 4:38
  SPEAKER_00: It's on the go.
• 4:39
  SPEAKER_00: I was working, I was uh international marketing manager at a biotech company, as most people are.
• 4:45
  SPEAKER_00: Busy family life, juggling work, juggling sports, juggling dinners, laundry, etc.
• 4:52
  SPEAKER_00: And yeah, that's what life was.
• 4:54
  SPEAKER_00: Just expectations that you keep on going from one weekend to the next and keeping all the balls up in the air.
• 4:59
  SPEAKER_00: So that's really what it was.
• 5:01
  SPEAKER_02: Busy job, busy family life.
• 5:03
  SPEAKER_02: I totally understand.
• 5:05
  SPEAKER_02: It's mom on all deck.
• 5:07
  SPEAKER_02: And then you started having some symptoms.
• 5:09
  SPEAKER_02: Can you tell us a little bit about what was happening?
• 5:11
  SPEAKER_00: Yeah, absolutely.
• 5:13
  SPEAKER_00: My symptoms were that I literally woke up one morning and I had vertigo.
• 5:18
  SPEAKER_00: Really, what that meant for me was You're very dizzy.
• 5:21
  SPEAKER_00: I woke up and I felt the room, we have a light fixture above the bed and it was spinning around in circles.
• 5:27
  SPEAKER_00: And I was like, what is going on here?
• 5:29
  SPEAKER_00: And I tried to get out of bed and I felt like I was on a lifeboat in the middle of a very choppy ocean.
• 5:35
  SPEAKER_00: Very scary.
• 5:36
  SPEAKER_00: And so I tried to get out of bed and I said to my husband, This is not working for me.
• 5:41
  SPEAKER_00: I said, There's no ways I can go to work.
• 5:43
  SPEAKER_00: Our son was four years old when I was diagnosed.
• 5:46
  SPEAKER_00: And so I said, I'm not going in.
• 5:47
  SPEAKER_00: Can you take him to daycare?
• 5:49
  SPEAKER_00: And anyways, it lasted a day or so.
• 5:52
  SPEAKER_00: I rested up in bed.
• 5:53
  SPEAKER_00: And then a few days later, I got a significant migraine.
• 5:57
  SPEAKER_00: And I had never suffered from headaches before, but this was a migraine that was incredibly intense.
• 6:02
  SPEAKER_00: Took my tyan and all, all of that, but it just lingered.
• 6:05
  SPEAKER_00: And a few days later, I said to my husband, something is off.
• 6:08
  SPEAKER_00: I'm not feeling good.
• 6:09
  SPEAKER_00: I'm going to go to the GP.
• 6:10
  SPEAKER_00: So I went to my doctor and she said to me, Seth, I don't feel right about this.
• 6:14
  SPEAKER_00: I think you need to get properly checked out.
• 6:16
  SPEAKER_00: You've had onset of vertigo, you've had migraines.
• 6:19
  SPEAKER_00: If this doesn't pan out and you're not feeling better by tomorrow, I suggest you go to the emergency room.
• 6:24
  SPEAKER_00: I'm not sure if it's a meningitis or what's going on.
• 6:27
  SPEAKER_00: And so I did.
• 6:28
  SPEAKER_00: The next morning I still felt really bad.
• 6:29
  SPEAKER_00: And so I went to the emergency room by myself because my son was four.
• 6:34
  SPEAKER_00: It was early in the morning.
• 6:35
  SPEAKER_00: I wanted to make a head start before the mad rush.
• 6:38
  SPEAKER_00: And so that's what I did.
• 6:39
  SPEAKER_00: They thought it might be meningitis.
• 6:41
  SPEAKER_00: I had a spinal tap, lumbar puncture, and they sent me for a CT scan as well, because they said to me, just let's do it back up there.
• 6:49
  SPEAKER_00: I didn't think anything of it, but I remember lying there, such a vivid memory on the CT scan table, looking up, and there was a maple leaf on the roof for some weird reason.
• 6:59
  SPEAKER_00: And I remember thinking, oh, that's strange.
• 7:01
  SPEAKER_00: I wonder what they're going to find.
• 7:04
  SPEAKER_00: And as I'm lying in the emergency room waiting later on, I remember hearing the doctor talking down the corridor saying, Wow, this is a really rare find.
• 7:13
  SPEAKER_00: We don't see these on a very regular basis, this kind of brain tumor.
• 7:18
  SPEAKER_00: And I thought, wow, that's really tough.
• 7:20
  SPEAKER_00: Whoever they're talking about.
• 7:22
  SPEAKER_00: I didn't realize they were talking about me.
• 7:24
  SPEAKER_00: Wow.
• 7:25
  SPEAKER_00: And then they came, the neurologist at that stage came to talk to me about 10 minutes later.
• 7:31
  SPEAKER_00: My husband had dashed out.
• 7:32
  SPEAKER_00: He'd actually come to join me, but he'd gone to get a coffee.
• 7:35
  SPEAKER_00: And so they came in to talk to you.
• 7:37
  SPEAKER_00: And so he came in to say to me, said, listen, he said, we have found out that you actually you do have viral meningitis.
• 7:45
  SPEAKER_00: And so that's probably what's causing your migraines.
• 7:48
  SPEAKER_00: But we've also found incidentally, meaning just as a fluke.
• 7:53
  SPEAKER_00: By accident, they found it.
• 7:55
  SPEAKER_00: Yeah.
• 7:55
  SPEAKER_00: By accident that you have a brain tumor.
• 7:58
  SPEAKER_00: So exactly what you were saying earlier on when you were chatting.
• 8:02
  SPEAKER_00: When you hear those words, you have a brain tumor.
• 8:05
  SPEAKER_00: I literally, my heart, I felt like my heart stopped.
• 8:09
  SPEAKER_00: And he said to me, But we don't think that's what's causing your headaches.
• 8:12
  SPEAKER_00: We think it's the meningitis, so it's not really anything to worry about.
• 8:17
  SPEAKER_00: He said, The neurosurgeon will come and talk to you shortly and he'll tell you the next course or plan.
• 8:22
  SPEAKER_00: And he walked out and he left me.
• 8:24
  SPEAKER_00: Wow.
• 8:25
  SPEAKER_00: And I was left by myself.
• 8:26
  SPEAKER_04: Oh my goodness.
• 8:27
  SPEAKER_00: By myself in the emergency room, just being told I had a brain tumor.
• 8:31
  SPEAKER_00: And I had no idea what it was, and that was it.
• 8:34
  SPEAKER_02: And they didn't know at this point in time, is it cancer?
• 8:37
  SPEAKER_02: Is it not cancer?
• 8:38
  SPEAKER_02: He did know what it was.
• 8:39
  SPEAKER_00: He said it's a non-malignant brain tumor.
• 8:41
  SPEAKER_00: So I understood it wasn't cancer.
• 8:44
  SPEAKER_00: But still, when you told you got something inside your brain, it's not supposed to be there.
• 8:49
  SPEAKER_00: I had no idea.
• 8:51
  SPEAKER_02: And your husband was out getting a coffee at this point in time.
• 8:54
  SPEAKER_02: So he didn't hear this news.
• 8:56
  SPEAKER_00: And he walked back in with his coffee and he said to me, He said, So if they come back in yet?
• 9:00
  SPEAKER_00: And I looked at him and I'm like, How do I tell my husband that this is what I've just heard?
• 9:05
  SPEAKER_00: And that was a hard one.
• 9:07
  SPEAKER_00: And I said to him, They told me I've got a brain tumor.
• 9:10
  SPEAKER_00: And he said, What?
• 9:12
  SPEAKER_00: And I just remember that point in time exactly.
• 9:15
  SPEAKER_00: We just sat there in silence.
• 9:17
  SPEAKER_00: It was hard.
• 9:19
  SPEAKER_00: There's a line in the sand that is drawn on that day.
• 9:22
  SPEAKER_00: It's 18th of May 2010.
• 9:23
  SPEAKER_00: It's a date you don't forget.
• 9:25
  SPEAKER_00: No.
• 9:25
  SPEAKER_00: It's a date you don't forget because the day before then, this everything was one color.
• 9:31
  SPEAKER_00: And then things change the way you perceive life, the way you perceive everything, the way you perceive every headache thereafter.
• 9:37
  SPEAKER_00: Is it this headache that's going to be the headache that's going to change everything?
• 9:41
  SPEAKER_00: Everything changes the way you perceive things.
• 9:44
  SPEAKER_02: And he shared with you what he had found, but you're sitting and absorbing this information in shock.
• 9:51
  SPEAKER_02: You mentioned you felt like your heart stopped.
• 9:53
  SPEAKER_02: I can imagine a big knot in your stomach as well.
• 9:56
  SPEAKER_02: But you're waiting to hear more information as you're processing this.
• 10:01
  SPEAKER_02: What happened next?
• 10:03
  SPEAKER_00: A neurosurgeon came to see me.
• 10:06
  SPEAKER_00: Never thought I'd see one of those specialists in my life.
• 10:10
  SPEAKER_04: I sure have, yeah.
• 10:12
  SPEAKER_00: And he said to me, Listen, this is what it is.
• 10:15
  SPEAKER_00: It's a non-malignant brain tumor.
• 10:17
  SPEAKER_00: He said, the size of it is not that we would operate right now.
• 10:21
  SPEAKER_00: He said, we don't think it's impacting any of your functions.
• 10:25
  SPEAKER_00: He said, what we would be doing is we'll do an MRI next.
• 10:28
  SPEAKER_00: And then afterwards we will do yearly MRIs.
• 10:31
  SPEAKER_00: You will be a watch and wait patient.
• 10:33
  SPEAKER_00: I'm like, what does that mean?
• 10:34
  SPEAKER_00: He said, We watch and we wait and we see if there's any change.
• 10:39
  SPEAKER_00: And if there is, then we make a decision on.
• 10:42
  SPEAKER_00: But if you suddenly experience any massive increase in headaches, dizziness, vertigo, loss of consciousness, then you have to be in the emergency room immediately.
• 10:52
  SPEAKER_00: Because then there is a chance that your brain tune has grown, it could or swelling in your brain, and that is an emergency situation.
• 10:59
  SPEAKER_00: I'm like, oh, fantastic, great.
• 11:02
  SPEAKER_00: Thank you.
• 11:03
  SPEAKER_00: Of course, there are questions around, and then that was it.
• 11:09
  SPEAKER_00: And he left and I went home.
• 11:11
  SPEAKER_00: Oh, Claire.
• 11:12
  SPEAKER_04: Yeah, I can, but like you alluded to it, and I don't know if I'm trying to process what you're saying.
• 11:17
  SPEAKER_04: Much like you likely were not much, because how processing it in the emergency room that day must have been something else.
• 11:24
  SPEAKER_04: But you mentioned that like one of your initial reactions to hearing the words not only brain tumor, but then the symptoms, if you feel this in your brain, or all those symptoms that are going to drive you to the emergency room, the watch and wait portion of it.
• 11:37
  SPEAKER_04: Maybe talk about that even just a little bit more, because I can imagine that every moment of every day, it's like it's just growing in me.
• 11:44
  SPEAKER_04: And because I forgot this, I can't think of this word or find this word, or if I got have a small headache or a large head, whatever, those type of things.
• 11:51
  SPEAKER_04: So yeah, just that experience.
• 11:53
  SPEAKER_04: Yeah, the fear.
• 11:54
  SPEAKER_00: 100%.
• 11:55
  SPEAKER_00: I think the biggest thing for me was having to figure out how to live with uncertainty of all of those exact things.
• 12:01
  SPEAKER_00: I was put on medications to deal with my migraines because then I started to have migraines.
• 12:08
  SPEAKER_00: But I then had to figure out like, is this just a migraine or is this like something I should be concerned about?
• 12:14
  SPEAKER_00: So sometimes I did have to go to the emergency room and they did have to do a CT scan, and it was like, yeah, you're okay.
• 12:20
  SPEAKER_00: That was my biggest challenge.
• 12:22
  SPEAKER_00: I call it the there's a fantastic quote from John Kavitzman, who's a meditation guru, and he talks about learning to surf the waves of uncertainty.
• 12:34
  SPEAKER_00: And that's exactly what I had to do because otherwise that I think would have crippled me.
• 12:39
  SPEAKER_00: Because you're right, you do just get a headache from I didn't drink enough water today, I had too much sun, I've got too much stress going on.
• 12:46
  SPEAKER_00: That is normal life.
• 12:48
  SPEAKER_00: But for me, that was a symptom of your brain could be getting worse, your tumor could be growing.
• 12:54
  SPEAKER_00: And so I had to really figure out how to deal with that.
• 12:57
  SPEAKER_00: But two years later, those exact symptoms did actually show that my brain tumor was doubling in size.
• 13:07
  SPEAKER_00: I had massive increase in vertigo, massive increase in migraines, but they did not resolve with any of my migraine medications, anything like that.
• 13:15
  SPEAKER_00: So it was a massive shift from anything that I normally experienced.
• 13:19
  SPEAKER_02: So over these two years, as you were processing and living in this uncertain time, were you still working?
• 13:26
  SPEAKER_00: I only told my direct boss about what was going on because I didn't want it to affect my work, how I was being perceived at work.
• 13:33
  SPEAKER_00: So yes, I continued to work.
• 13:35
  SPEAKER_00: But during my probably a couple of months, six months in or so, I decided to actually consult and go into consulting when my son started school.
• 13:44
  SPEAKER_00: So probably a year into having my brain tumor.
• 13:48
  SPEAKER_00: So then I started working for myself.
• 13:50
  SPEAKER_00: So it made it a little bit easier in a way.
• 13:53
  SPEAKER_00: So yeah, that's what I was doing, but I was still actively working, yes.
• 13:56
  SPEAKER_02: So you're actively working for a period of two years, managing this uncertainty, and then you symptoms started getting worse, and you get the news that it's now much bigger.
• 14:07
  SPEAKER_02: At that point in time, were they suggesting it's surgery time?
• 14:11
  SPEAKER_02: It wasn't that easy, unfortunately.
• 14:14
  SPEAKER_00: I got acutely ill with those symptoms and I had to struggle to get care.
• 14:20
  SPEAKER_00: My GP was my foundational pillar of care for me.
• 14:25
  SPEAKER_00: Said, we need to send you to your neurologist.
• 14:28
  SPEAKER_00: I'm not sure what's going on here.
• 14:29
  SPEAKER_00: My neurologist was on leave.
• 14:32
  SPEAKER_00: There was a locum who didn't quite understand what was going on, told me I had an ear infection.
• 14:37
  SPEAKER_00: I went back to my GP who said, we'll put you on extra migraine meds, let's see.
• 14:42
  SPEAKER_00: Lasted a few days.
• 14:43
  SPEAKER_00: I went back and said, This is not working.
• 14:46
  SPEAKER_00: Something's wrong.
• 14:47
  SPEAKER_00: She said, You're right.
• 14:48
  SPEAKER_00: You need to go to the emergency room.
• 14:50
  SPEAKER_00: You need a CT scan.
• 14:51
  SPEAKER_00: I'm concerned your brain tumor's growing.
• 14:54
  SPEAKER_00: She sent me with a piece of paper to the emergency room.
• 14:58
  SPEAKER_00: I went there by then I was really not well at all.
• 15:01
  SPEAKER_00: I went there.
• 15:02
  SPEAKER_00: Emergency room was crazy busy.
• 15:05
  SPEAKER_00: I got there, told them everything, told them I had a brain tumor, a GPR for a CT scan.
• 15:11
  SPEAKER_00: Long story short, uh, they did not do a CT scan.
• 15:14
  SPEAKER_00: They just gave me IV migraine medications and sent me home.
• 15:19
  SPEAKER_00: Did they give you a reason as to why they weren't or they were just shuffling through?
• 15:23
  SPEAKER_00: They called the neurologist who I'd seen who said she didn't believe I needed a CT scan.
• 15:31
  SPEAKER_00: Unfortunately, looking back, because I actually filed a complaint with College of Physicians and Surgeons after this all, she actually had not documented my visit with her when I saw her.
• 15:43
  SPEAKER_00: Oh dear.
• 15:43
  SPEAKER_00: And so I suppose it speaks to health data, the flow of information, and how important it is to do all of this.
• 15:50
  SPEAKER_00: That's a big error, Claire.
• 15:52
  SPEAKER_00: Yes, I had medical error.
• 15:54
  SPEAKER_00: And so, a very long story short, my GP said we need to get you an MRI urgently.
• 16:00
  SPEAKER_00: I'd also had a second opinion on my tumor, and that neurosurgeon said you need an MRI immediately.
• 16:07
  SPEAKER_00: And so I did.
• 16:07
  SPEAKER_00: I got a private MRI, which showed indeed my brain tumor had doubled in size.
• 16:12
  SPEAKER_00: I actually had hydrocephalus, my brain was swollen, and I needed brain surgery immediately.
• 16:18
  SPEAKER_04: So, Claire, you talked about like surfing the waves of uncertainty.
• 16:22
  SPEAKER_04: These are pretty big waves that you're talking about, right?
• 16:25
  SPEAKER_04: So, uh like an emotional waves too, like I can hear it in your voice.
• 16:29
  SPEAKER_04: But I guess two questions.
• 16:30
  SPEAKER_04: One is like, how do you manage that?
• 16:32
  SPEAKER_04: And I can imagine for your husband and your son and other family as well.
• 16:36
  SPEAKER_04: So that's part of it.
• 16:37
  SPEAKER_04: How did you manage that, or are you in so much pain?
• 16:41
  SPEAKER_04: Because I'm sure the pain associated with everything and the hydrocephalus, and then trying to advocate for care, thankfully for your GP was in your corner.
• 16:50
  SPEAKER_04: But then the second part is like, what else do you hope that people understand about that emotional impact of everything we've been talking about?
• 16:58
  SPEAKER_04: The diagnosis, the medical error, going after care on your own, or having to drive to get that.
• 17:04
  SPEAKER_00: Yeah, I think a few things.
• 17:06
  SPEAKER_00: So the impact I think was profound.
• 17:10
  SPEAKER_00: By the time I was so acutely ill, I was also starting to lose feeling in my legs.
• 17:17
  SPEAKER_00: My memory was starting to go as well.
• 17:19
  SPEAKER_00: The pain, not so much.
• 17:21
  SPEAKER_00: When you look back at that, it's a hard one.
• 17:24
  SPEAKER_02: Yeah.
• 17:25
  SPEAKER_00: I'd lost a lot of trust in the healthcare system as well, and so had my husband, because not only the neurologist, but also the emergency room had not actually picked up what was going on.
• 17:36
  SPEAKER_02: Despite you asking, because you had asked, here's what I need, and that got lost.
• 17:41
  SPEAKER_02: Yes.
• 17:42
  SPEAKER_00: I think this is highlighted for me.
• 17:44
  SPEAKER_00: Number one is the challenge with when information doesn't flow, because we had information from my neurologist with which there was my GP information.
• 17:55
  SPEAKER_00: There was this lack of flow of information about me, Claire, and what had happened in the prior sort of it was a 10-day period that wasn't actually getting to the people that needed to actually see, oh, this is actually what's happened to her over the past 10 days.
• 18:08
  SPEAKER_00: Oh wow, this is probably what we should be doing for her right now.
• 18:13
  SPEAKER_00: I was not in a place, even though I could say this is what I need, to really push on it hard.
• 18:19
  SPEAKER_00: I was acutely ill.
• 18:20
  SPEAKER_00: So I think that's what they highlighted for me when I, after my surgery and all that, I look back and I had a lot of PTSD that I had to work through with a clinical counselor and everything after all of this.
• 18:34
  SPEAKER_00: And when I look back on it, I realized that there were a couple of things.
• 18:39
  SPEAKER_00: One is that how did I actually make this, make it through all of this?
• 18:42
  SPEAKER_00: And I think one of the reasons was I did actually manage to pull everything together somehow with my husband.
• 18:50
  SPEAKER_00: And if I hadn't had that backbone, I wouldn't be here today talking with you.
• 18:56
  SPEAKER_00: And I think that's about you have to be your own advocate for your health care.
• 19:02
  SPEAKER_00: You have to have be that for yourself or have someone beside you doing it for you.
• 19:07
  SPEAKER_00: You spoke earlier about caregivers, Ursula, and I think that is critical is having somebody beside you if you're not able to do it for yourself.
• 19:15
  SPEAKER_02: I was thinking about that, Claire, and I know your husband was actively involved with you.
• 19:19
  SPEAKER_02: And other conversations we've had, I can imagine how important that is.
• 19:24
  SPEAKER_02: I didn't ask you yet if these were if memory was something you noticed or if those around you noticed as well.
• 19:30
  SPEAKER_02: But regardless of the answer to that, it to be able to have somebody that you trust to bounce ideas off of and agree that you're going in the right direction is so important.
• 19:40
  SPEAKER_02: So kudos to having that caregiver with you.
• 19:43
  SPEAKER_00: Yeah, it's absolutely integral because I think behind every patient, there often is a caregiver or support person.
• 19:50
  SPEAKER_00: And I've realized that more and more, especially now as someone who lives with a brain injury, it's really important for me because my memory is off and off.
• 19:58
  SPEAKER_00: People don't see it when they look at me because I'm a high-functioning brain injury.
• 20:02
  SPEAKER_00: But I think that is really key.
• 20:04
  SPEAKER_00: And so that's why one of my messages to people is it's not often the people within the healthcare system that are intentionally going out there to not pass on information or not do this or not do that.
• 20:17
  SPEAKER_00: But it's often the way the system is set up.
• 20:19
  SPEAKER_00: It's not set up around patients, unfortunately.
• 20:22
  SPEAKER_00: It's not set up particularly around caregivers.
• 20:25
  SPEAKER_00: It's just the way the system has been set up over the past 50, 60, 70 years.
• 20:30
  SPEAKER_00: And so people don't, they assume and expect that it's set up around them, but unfortunately it's not.
• 20:36
  SPEAKER_00: That is why we need to actively be aware of that and try and be advocates and push for what we are looking for in our health and healthcare.
• 20:46
  SPEAKER_00: But it's no easy task, let me tell you.
• 20:48
  SPEAKER_00: Even today, in my own care, it's not easy to do.
• 20:52
  SPEAKER_02: It's an ongoing advocacy situation for people for themselves, and as you said, the caregiver alongside.
• 20:58
  SPEAKER_02: Can you take us back to the point in time where you did the private MRI?
• 21:03
  SPEAKER_02: Is that when things moved forward and they stepped in to help with the surgery time period or were things still further delayed?
• 21:10
  SPEAKER_00: So when that was the case, we had significant broken trusts with the healthcare system, as you can imagine.
• 21:18
  SPEAKER_00: When we realized the actual extent of how ill I was, we assessed our options.
• 21:23
  SPEAKER_00: And given the fact that when I tried to get an MRI, I phoned some of the health authorities and they told me that the wait list was two months or whatever.
• 21:32
  SPEAKER_00: And I knew that if I needed one, I'd have to go back to the emergency room.
• 21:35
  SPEAKER_00: And I already knew what that looked like.
• 21:37
  SPEAKER_00: And so when I knew that I would need surgery, I was like, How is this even gonna happen?
• 21:43
  SPEAKER_00: I had a second opinion in the US who was the one who told me when I emailed him as to how I was feeling.
• 21:50
  SPEAKER_00: He said, You need an MRI immediately.
• 21:52
  SPEAKER_00: He said, You need to go and find one right now, and this is what you need to do.
• 21:55
  SPEAKER_00: And so when I found out what the results were, I emailed it to him and he said, You need Surgery like right now.
• 22:02
  SPEAKER_00: And so my husband and I discussed this.
• 22:04
  SPEAKER_00: And my husband said, I'm not allowing anybody here to operate on your brain.
• 22:10
  SPEAKER_00: He said, Find out from doctor in the US how we can make this happen.
• 22:16
  SPEAKER_00: He said, He's the only one I trust right now.
• 22:18
  SPEAKER_00: And so that is what we did.
• 22:20
  SPEAKER_00: He said, I don't care if we don't go on vacations.
• 22:22
  SPEAKER_00: He said, this is more important.
• 22:24
  SPEAKER_02: And so that's what we did.
• 22:26
  SPEAKER_02: Thank you for sharing, Claren.
• 22:27
  SPEAKER_02: That's a lot.
• 22:28
  SPEAKER_02: I can understand the broken trust.
• 22:30
  SPEAKER_02: You had the surgery that you came back to recover in Canada.
• 22:34
  SPEAKER_02: What happened after surgery?
• 22:36
  SPEAKER_00: It took me 18 months to recover from my surgery.
• 22:40
  SPEAKER_00: No one told me brain surgery would be that long to recover from.
• 22:44
  SPEAKER_00: I was transferred to a new neurosurgeon.
• 22:46
  SPEAKER_00: My GP sorted that out while I was away.
• 22:48
  SPEAKER_02: What did they tell you, Claire?
• 22:50
  SPEAKER_02: What were the expectations around recovery time, or was that not presented?
• 22:54
  SPEAKER_00: I don't remember too much, but when I did come back, because I was in ICU for a week and then I was in and out of hospital, but in the US as well.
• 23:03
  SPEAKER_00: So we were away for two weeks.
• 23:05
  SPEAKER_00: But when I got back to Canada, the neurosurgeon here said it'll take at least a year before you feel back to normal.
• 23:12
  SPEAKER_00: And I was like, what?
• 23:13
  SPEAKER_00: I'm expecting like three months.
• 23:15
  SPEAKER_00: He's a year before you feel back to normal.
• 23:17
  SPEAKER_00: But it took me an extra six months.
• 23:19
  SPEAKER_00: And the biggest thing is the fatigue because the only way your brain can heal is when it's asleep.
• 23:25
  SPEAKER_00: It's not like a broken leg that you can put on a cast.
• 23:29
  SPEAKER_00: The only time it can switch down is when the motherboard has got nothing else to think about.
• 23:34
  SPEAKER_00: Exactly.
• 23:34
  SPEAKER_00: And so I was sleeping 20 hours a day sometimes.
• 23:38
  SPEAKER_00: I'd sleep a full night, I'd get up, have some breakfast, go back to sleep.
• 23:42
  SPEAKER_00: It was unbelievable.
• 23:44
  SPEAKER_00: And I was still napping it.
• 23:46
  SPEAKER_00: And I still do, even some days now.
• 23:48
  SPEAKER_00: I'll get up.
• 23:49
  SPEAKER_00: And sometimes by nine o'clock, if I'm really got a lot on and I'm doing too much, my brain tells me this is a red traffic light, go back to sleep.
• 23:58
  SPEAKER_02: And meanwhile, you have a young child who you're feeling guilty as a mom to not spend time with because you want to be there with them.
• 24:06
  SPEAKER_02: You have to rest and recover.
• 24:07
  SPEAKER_00: It was really hard and a lot of onus on my husband to run the house, sort everything out.
• 24:14
  SPEAKER_00: We had, I couldn't drive for a long time, had to have a nurse come in and look after, do things for me for my son for quite some time.
• 24:22
  SPEAKER_04: So I was gonna say I would also imagine if your brain as a motherboard has to be shut down for that period of time every day, then even when you're the portions that you're awake, I'm assuming then evaluating those symptoms a little bit.
• 24:37
  SPEAKER_04: Was it getting, am I actually am I getting better?
• 24:40
  SPEAKER_04: Am I not getting better?
• 24:41
  SPEAKER_04: That sort of thing over the course of those 18 months.
• 24:44
  SPEAKER_04: And meanwhile, as I said, you're exhausted, so you need to sleep and turn off the motherboard.
• 24:48
  SPEAKER_00: But yeah, if you can talk around mental health, because that's often an area that's not even focused on, and I think it's really important.
• 24:56
  SPEAKER_02: So, Claire, you really wanted to move forward and make meaning out of this.
• 25:01
  SPEAKER_02: And you talked about starting advocacy in a forward motion and finding purpose and helping others with communication.
• 25:07
  SPEAKER_02: Tell us a little bit about what two steps forward means to you.
• 25:10
  SPEAKER_00: So, two steps forward, it is actually the name of the book that I wrote.
• 25:14
  SPEAKER_00: That's where it comes from.
• 25:15
  SPEAKER_00: I wrote a book called Two Steps Forward, Embracing Life with a Brain Tumor.
• 25:19
  SPEAKER_00: And the name of that book came from my recovery.
• 25:22
  SPEAKER_00: Because even though I had many steps backwards during my recovery, I said to myself, it's okay, you're taking two steps forward, one step backwards.
• 25:32
  SPEAKER_00: And that's where it's always come from.
• 25:34
  SPEAKER_00: Is that my change of mindset was really integral to my recovery?
• 25:39
  SPEAKER_00: My advocacy started initially around supporting individuals with brain tumors and their family, and then it grew into really advocating for people to how to activate yourself in your health and health care.
• 25:55
  SPEAKER_00: But it's always been around anything to do with how to empower people in accessing care.
• 26:01
  SPEAKER_00: It's now shifted a little bit more into accessing how to empower people in accessing their health information, but it's always been around how to give people agency in how they can really take a little bit more ownership around their health and healthcare.
• 26:16
  SPEAKER_02: And looking ahead, what are you most hopeful about and what still feels uncertain?
• 26:22
  SPEAKER_00: It's a good question because one of the areas that I do a lot of work now in is around health data.
• 26:29
  SPEAKER_00: And I'm actually starting to see quite a bit of hope in that area.
• 26:32
  SPEAKER_00: I know it might not seem, oh yes, everything's changing, everything's moving, and information is flowing, but the work that I am doing, I'm starting to see people understand the importance of that information does need to flow, not only for patients and caregivers, but also very importantly for the people providing their care.
• 26:53
  SPEAKER_00: And then the groups that I'm working with, one of them is networked health, is people across the whole continuum.
• 26:59
  SPEAKER_00: Everyone who's touching healthcare, so it could be researchers, public people in public health, yes, the clinicians, the patients, but also people in sort of government and policy are really starting to come together to figure out how we can make this happen because it really impacts both the quality and the safety of care.
• 27:17
  SPEAKER_00: But it also has, for example, an economic impact.
• 27:20
  SPEAKER_00: It has an impact from innovation.
• 27:22
  SPEAKER_00: It has so many ripple effects that if we don't have the flow and interoperability of health data, it's something that we really are missing out on.
• 27:30
  SPEAKER_00: And so that is one of the areas that I do see hope in.
• 27:33
  SPEAKER_00: And it is very motivational for me as a patient partner when I sit in on all this work.
• 27:39
  SPEAKER_00: The areas of uncertainty, yes, still access to care is still an era of uncertainty sometimes.
• 27:45
  SPEAKER_00: But I think that it is everywhere.
• 27:46
  SPEAKER_00: And I think that's why it's still so important to know that you need to still be your own advocate for your care.
• 27:53
  SPEAKER_00: And that's by tracking your records, educating yourself about your healthcare conditions, asking questions and figuring out how to manage your own care.
• 28:01
  SPEAKER_00: And I call that my team approach track, educate, ask, and manage.
• 28:04
  SPEAKER_00: It shouldn't necessarily be that way, but I don't think in Canada we are alone in having to do that.
• 28:10
  SPEAKER_00: And I think at the end of the day, if we do that, you you might just be saving not only your life, but sometimes somebody that you love or a friend.
• 28:17
  SPEAKER_00: And I think that's the uncertainty sometimes that we have to face.
• 28:21
  SPEAKER_02: I appreciate that so much, Claire.
• 28:23
  SPEAKER_02: And I want to say thank you for this entire conversation today, sharing everything from your professional background and the identity you had at that time to a significant experience, life-changing as a patient and what you've created and done with two steps forward to rebuild life, find voice, and look forward.
• 28:43
  SPEAKER_02: Ending on a fun note, I understand you really enjoy hiking.
• 28:47
  SPEAKER_02: Tell us a little bit more about that.
• 28:49
  SPEAKER_00: I think this actually stems back to my recovery.
• 28:52
  SPEAKER_00: I literally had to learn to get out there and walk.
• 28:55
  SPEAKER_00: And that was my recovery.
• 28:57
  SPEAKER_00: It was one step at a time.
• 28:59
  SPEAKER_00: And I had to start doing it every single day.
• 29:01
  SPEAKER_00: And so from there, I loved being out in nature.
• 29:04
  SPEAKER_00: For me, that was how I grounded back to you are here, you are in the present, and you are okay.
• 29:10
  SPEAKER_00: And so for me, getting out into nature and walking is something that I love doing every single day.
• 29:16
  SPEAKER_00: And so I'm looking forward to in the near future to be able to do something special and find a special hike to go on.
• 29:22
  SPEAKER_00: I have a big birthday coming up.
• 29:25
  SPEAKER_00: So I'm looking forward to finding something like that to do.
• 29:29
  SPEAKER_04: Maybe just one last parting thought, too, because I do encourage people.
• 29:32
  SPEAKER_04: You mentioned your Two Steps Forward book to check that out for sure.
• 29:36
  SPEAKER_04: But also the surf the waves of uncertainty.
• 29:39
  SPEAKER_04: I think certainly for you, as you continue in your recovery, and there that portion that you talked about, and also the mental health supports that go along with that, I think are a critical component.
• 29:50
  SPEAKER_04: So I thank you for bringing both of those up and really thank you for joining Ursula and I today.
• 29:55
  SPEAKER_00: No, thank you both for your time and both for what you are doing.
• 29:59
  SPEAKER_00: And it's been a pleasure to be with you today.
• 30:02
  SPEAKER_00: Thank you, Claire.
• 30:05
  SPEAKER_02: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 30:10
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• 30:17
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• 30:24
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• 30:28
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• 30:39
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• 30:49
  SPEAKER_02: Until next time, stay connected.
• 30:51
  SPEAKER_02: Your voice matters.