In this episode, Kelsey Burcombe shares her journey as a brain tumor survivor, detailing her diagnosis, surgery, and the emotional challenges that followed. She discusses the symptoms that led to her diagnosis, the shock of receiving the news, and the isolation she felt post-surgery. Kelsey emphasizes the importance of support systems, coping strategies, and the need for open conversations about mental health. She reflects on how her experience has changed her perspective on life and her hopes for the future.

• She was diagnosed with a 5cm parasagittal meningioma in March 2024.

• Kelsey underwent an 11-hour craniotomy followed by a medically induced coma.

• Life before her diagnosis involved managing a bar and struggling with mental health.

• Symptoms included drop foot and severe headaches, which she initially ignored.

• The diagnosis process was quick, taking only a week from eye doctor visit to surgery.

• Post-surgery, Kelsey felt isolated as others thought she was fine.

• She struggled with the emotional aftermath of her surgery, feeling misunderstood by friends and family.

• Kelsey emphasizes the importance of talking about her experience and connecting with others.

• She hopes to manage her anxiety and live more freely in the future.

 

Connect with Kelsey Burcombe

Facebook: https://www.facebook.com/kelsingram

Instagram: @kelseyburcombe

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Be a Guest

Interested in being a guest on a future episode? Visit rewired-minds.com for more information and to submit your request.

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Work with Bri Salsman

If you’d like to work more closely with Bri as your coach, visit rewired-minds.com for details.

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Disclaimer

The stories and experiences shared in this podcast are personal accounts from patients, survivors, caregivers, family members and friends affected by brain tumors. This content is for informational and awareness purposes only and is not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation and treatment options. Most importantly, take care of yourself as you listen and process.

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Transcript

Bri (00:00)

The stories and experiences shared in this podcast are personal accounts from patients, survivors, caregivers, family members and friends affected by brain tumors. This content is for informational and awareness purposes only and is not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation and treatment options. Most importantly, take care of yourself as you listen and process.

 

Bri (00:31)

I'm Bri Salsman, a brain tumor survivor and life coach, and you're listening to Rewired Minds, a podcast where we share brain tumor stories that change us. Today's guest is Kelsey Burcombe. Welcome, Kelsey. How are you doing today?

 

Kelsey (00:43)

Good, how are you, Bri?

 

Bri (00:44)

I'm good, I'm good. I'm very excited for our conversation today. I already, of course, have a sneak peek a little bit about your journey, but I really held the details for this conversation today so people can hear the real, raw interactions and conversation around it. So I'm excited to dig in. But before we get there, I'd love to hear who is Kelsey?

 

Kelsey (01:08)

So my name is Kelsey, like you mentioned, I'm 36 years old. I'm originally from Dallas, Texas, but I've been living in the Cayman Islands for the last eight years. I'm married for nine, no kids, because I'm terrified.

 

Bri (01:21)

Hahaha!

 

I can totally relate on the kids end of things. I'm in a similar boat of no kids and no desire either. 

 

Kelsey (01:27)

Yeah

 

I hate to say it but yeah.

 

Bri (01:35)

And of course, we're here because obviously you have experience with a brain tumor. So can you share a little bit about your diagnosis just so we can kind of frame our conversation a bit.

 

Kelsey (01:48)

Sure, so I was diagnosed with a 5cm parasagittal meningioma in March of 2024 and after a whirlwind two weeks I had an 11 hour craniotomy followed by a two day medically induced coma, nice week in the hospital and now I'm almost back to normal minus a few fun deficits.

 

Bri (02:12)

Mm. Yeah. So you've had surgery, any radiation or chemo?

 

Kelsey (02:18)

No radiation and chemo. The only way I would do radiation is if my doctor notices any recurrence in the next couple years.

 

Bri (02:25)

Yeah, yeah, this is already sounding very familiar to me. I also was diagnosed with meningioma and started out with surgery and my doctor said the same thing, like, let's not do radiation or chemo until it's necessary. He took a, and he'll say this himself, you know, I'm taking a very conservative approach of like, let's only do what we have to do because, you know, out of all the organs in our body, the brain is the thing we know the least about. And so that means that goes the same for tumors and treatments and everything. And so he's, you know, very cautious about not wanting to overtreat basically. Yeah. Yeah.

 

Kelsey (02:53)

Mm-hmm.

 

Kelsey (03:06)

Yeah, similar as well. did. I had a Simpson grade two. So because the tumor was pressed up on my, hat's it called? The sagittal, I can't even remember technical words. The big, the big vein in your brain. It was pushed up into that. So he did leave a little bit behind that he said he cauterized. So there is a chance of reoccurrence down the line, but it's something I try not to worry about in my everyday life only when the MRIs are approaching.

 

Bri (03:21)

Yeah, yeah, absolutely, absolutely. Let's rewind a bit to life before your diagnosis. What did life look like? I know you mentioned a little bit about married and living in the Cayman Islands and all that good stuff, but generally, how would you describe your life before this?

 

Kelsey (03:47)

Before surgery, I was managing a bar, which is always a really good time. I wouldn't say I had like the best handle on taking care of myself. Obviously like drinking, kind of going out quite a bit. I was working at very much like a party vibe. If you ever been on a cruise ship, you might've wandered into my bar before.

 

Um, so it really good. Um, I've always like, dealt really bad with stress and anxiety though. Mental health has never been my strongest point, which probably leads to the lack of self care as well. But yeah, really before surgery, I was just working a lot, drinking too much, having too much fun until obviously symptoms started showing up. And then that's when things got a little crazy.

 

Bri (04:24)

Yeah, what were those symptoms that you started to notice?

 

Kelsey (04:27)

So I've always had really bad issues with knees. I am unfortunately very tall and played a lot of sports as a kid. So maybe Christmas time before diagnosis, I noticed my left foot kind of just stopped working properly. When I was walking, you would literally hear my foot slapping against the ground.

 

Bri (04:43)

Hmm.

 

Kelsey (04:44)

So I started going to physical therapy and he was like, you just have really bad balance. And I was like, I don't know, this feels, this feels wrong. And then I started getting these insane, I've never really found a word for it. I guess the closest thing would be ice pick headaches where I would just be walking and all of a sudden just this pounding, like whooshing headache would hit me. I would start to lose vision a little bit. I thought at the time I was just like passing out dehydrated, but it was crazy. I don't know how to describe those headaches. I still don't, I still have them. But those were the big red flags that I ignored for a very long time and brushed them off until I finally took action and made an appointment to see some people and yeah.

 

Bri (05:21)

Yeah. And so from when you started to experience these symptoms to the point at which you're having the conversations about surgery, what kind of timeframe are we talking there?

 

Kelsey (05:32)

Diagnosis was very quick. I was showing a lot of weird symptoms for a long time. Like I said, I was in physical therapy for my foot issue. Finally, I think one night we went out to the movies and I came home and I had had a few too many glasses of wine. But I was talking to my husband and I was like, look at my foot. It doesn't make a circle. It won't move. It just goes up and down. And of course, like alcohol induced, I started getting emotional and I was like, something's wrong. I don't want to go to the doctor. What if it's serious? I think that's a big thing with a lot of people. Maybe it's just me, but avoidance of doctors and hospitals has always been like a big problem for me.

 

So my husband was like, look, you're going to go see a GP and just talk to him about what's going on with your headaches and your foot, or I'll make the appointment for you and I'll come pick you up and we'll drive there together if you make me do it. So I ended up in my, the GP's office. She was like, you definitely are showing signs of drop foot, but you're in physical therapy. So you really need to talk to your physical therapist more about that. And then you should probably get your eyes checked because everyone in your family wears glasses. You haven't had a eye doctor in a long time.

 

So I went to the eye doctor maybe a week and a half later being like, okay, he's going to help with my migraines. I'm going to get some blue light glasses, whatever. The whole appointment goes really good. He's like, yeah, you have a stigmatism. then towards the end of it, he quite literally says, let me just do this last eye health test because sometimes I find brain tumors.

 

Bri (06:48)

Oh wow.

 

Kelsey (06:50)

So he holds up, he gets this little light thing and he gets this really, really odd look on his face. A kind of look, you don't want to see a doctor have ever. And he holds up a little red disc and he's like, can you see this? And I was like, what do you mean? Can I see it? He's like, can you see it? And I was like, yeah, it's a, it's a red disc.

 

And he immediately starts panicking. Like goes to his computer and he says, I'm giving you an emergency referral. I need you to go down the street to this ophthalmologist who's got more equipment than I do. I'm not liking what I'm seeing. Something's going on. So I get ushered out of that eye doctor. It's told to go immediately down the road to another one with more like intense testing. And he diagnosed me with papillodema, which is swelling of the optic nerves, usually caused by brain tumors or IHH. He gave me an emergency referral to a neuro consult. That was the next day. He saw my foot and immediately gave me an emergency referral to an MRI. So I ended up in an MRI machine the next day. That was an hour and 45 minutes scan. I came out, honestly, the technician had like the weirdest look on his face. He's like, come with me right now. Come with me right now.

 

And I'm still in like a gown. I have a port in my hand and I was like, can I change? And he was like, yeah, change, change. I was like, can you take the port out of my hand? He's like, no, no, you need to come with me now. And I immediately go in and I get sat down at a desk and the name tag says neurosurgeon. And I was like, there it is. It's a tumor. Yeah. So it was all within, I think the eye doctor was Monday and I was diagnosed with a brain tumor on Friday, immediately after my MRI.

 

Bri (08:15)

That was really, really fast. If you can take yourself back to that week, and remember, like, how were you making meaning of all of this? Or were you?

 

Kelsey (08:22)

I wasn't. I think the biggest thing I can describe about from diagnosis to surgery, I think I was in like a state of shock. I don't actually even remember crying until they wheeled me out of like my hospital room to go into surgery. And I like saw my husband like, bless him, waving me goodbye. And I just like lost it. And the nurse is like, no, no, no, don't cry. Don't cry. I was like, I'm gonna freak out. Like talk to me about anything.

 

But the entire time it was a state of shock. I don't remember crying when I was diagnosed. I remember like honestly trying to make jokes with the doctor and my husband sitting there having a meltdown. But I think I knew before just with like the papillodema diagnosis and the symptoms I was having, I'm a huge type A personality. I was on Google, me and chat GPT went through all my symptoms. I think the day before my MRI, I was telling people it's a brain tumor. Like I know it is. So I think just like the fact that I was so convinced that I had it at that point by the time I was diagnosed it was just, it was what it was at that point and I just never really coped with it or thought about it.

 

Bri (09:14)

Yeah, I mean, it's almost, it sounds like it's almost like I'm so in it and having to make decisions that it's like the practical side of your brain kicks in and like the emotional side has to wait almost a little bit, it sounds.

 

Kelsey (09:27)

Yeah, for sure. No, definitely, the best way I could say it was the state of shock. Like I never really, I don't think I processed anything because even after diagnosis, it was two weeks till surgery and it was very much go to this doctor's appointment, get a CT scan, do this, get lung x-rays, meet the anesthesiologist. It was just so quick. I don't think I really ever had time to like get in my feelings about it. It was just kind of like that week was it, it was what it was and the two weeks after it was what it was, you know.

 

Bri (09:56)

What helped the most during this period of time when you're getting all this information just dumped on you?

 

Kelsey (10:01)

As terrible as it sounds, avoidance and procrastination. 

 

Bri (10:05)

Yeah. Hey, sometimes that's what we need. I mean, it's real. It's real. It serves a purpose. It does.

 

Kelsey (10:12)

It really does.

 

Bri (10:13)

It's not always a bad thing.

 

Kelsey (10:14)

Yeah. It's been my MO my entire life. I'm very avoidant. Like even earlier I said, like, I wouldn't even make a doctor's appointment. I'm very avoidant. I'm very big on procrastination. I get the job done always. It always ends up happening, but really I just don't think I wanted to think about it. I didn't want to deal with it. So, you know, I was on steroids at this point, which give you enough energy to last a lifetime. So my house had never been cleaner. I deep cleaned every little corner. I organized, I went to like full housekeeper mode because I wasn't working. I wasn't allowed to drive for fear of seizures. So yeah, I just think I just showed up for my appointments and went through the motions until it was time to go to the hospital.

 

Bri (10:51)

And I know you shared earlier that you grew up in Dallas, but now you live in Grand Cayman. Where were you when you, was this pre-move, post-move?

 

Kelsey (11:01)

This was post so I was in Cayman Islands for all of this. So I did have the option. My neurosurgeon was like, if you want to go home to Dallas and try to figure this out, meet with doctors there, you can, it's up to you. Um, but with health insurance, obviously getting to the States with my health insurance, getting coverage and finding a doctor. Like I immediately joined like Reddit sub forms and stuff and everyone talking about, I can't find a doctor. I’m waiting for appointments. And with me, it was like, here's five doctors appointments and emergency referrals in a week. For me, it really didn't make sense to go back to the States. Financially or just I wanted it out I guess I just wanted to get it over with.

 

Bri (11:36)

Yeah.

 

Kelsey (11:37)

So I didn't want to go home and struggle and you know I just wanted… I accepted the doctor I got and went through the surgery with him.

 

Bri (11:45)

Yeah. And you've mentioned your husband. Who else was in your support network for all of this?

 

Kelsey (11:51)

Um, pre surgery, I think a lot of my friends were around. Um, a lot of people came over when I was sitting at home waiting for surgery and just hung out, um, dropped off groceries and some kombucha, like anything to kind of make my day. Um, my parents really wanted to come down before surgery, but I really didn't want the added pressure of someone staying, which I think really hurt their feelings. Sorry, mom and dad.

 

Um, I didn't want the pressure of having someone else in the house and like having to act away and kind of like, for lack of better words, make sure they were emotionally okay with what was happening. I really just wanted to, like I said earlier, avoid and procrastinate. They did end up coming down when I got released from the hospital because I was in hospital for a little over a week. And that was nice to have somebody there to watch me. My husband could go back to work. He was actually building the house we're in now at the time, which is very poor timing to get very sick when you're building a house and trying to sell one. But that's how life works, I guess.

 

Bri (12:51)

Well, one of the things that you shared earlier on and for listeners, a little bit of context. When I am working with guests, it's not just, oh you wanna be on, let's jump on and start recording. There's a whole process behind the scenes that happens to help guests prepare and feel comfortable and confident in sharing their story every step of the way.

 

And so one of those things that you shared earlier in this process is, and I actually would like to read it the way you wrote it, if that's okay.

 

Kelsey (13:26)

Yeah, of course.

 

Bri (13:27)

You shared, after my surgery, everyone around me, friends, family, employers, seemed to think the hard part was over and I was fine. But for me, that's when the real challenge began. Life after surgery has been incredibly isolating. The people in my life act like it never happened while I'm still living with blurred vision, insane bursts of pulsating headaches, limp weakness, depression, anxiety, et cetera. How is it hearing that back?

 

Kelsey (13:59)

Rough, you know, it's always easier to write things down than to talk about them, right. But I think it does stand true. You know, I mentioned on the fact that before surgery, like a lot of people were coming over, they were texting me, they're reaching out. When I did finally like come out of, you know, when I was awake, my husband gave my phone back, he was only allowed to visit for I think two hours a day. So I was very alone in ICU and a of people were texting and checking in. And maybe like the week after I got home, it continued. But I think after that, I don't want to say people lost interest because that's not fair, right.

 

Everyone's got their own life and everyone's got their own struggles and they're all going through so much like we all are. But I really think that people thought I was out of the woods. I was good. I was out. I didn't have a tumor anymore. I was recovering. That's when it got really bad I think.

 

You know, I mentioned earlier steroids and that false sense of bravado and all that energy. I think coming off steroids was one of the hardest things for me because I left surgery with 50 staples in my head, went home and I felt great. I was like, yeah, let's make banana bread and chill and hang out. Yeah, I'll brunch on Sunday. Everybody come over. I’ll do the dishes after you guys cook, you know?

 

Like it was crazy coming home. It was absolutely wild. And I think everyone really thought like it wasn't that big a deal because of the way I was acting. And that's on me as well. Like I said, like that state of shock and like not really processing my emotions. Maybe I was projecting that too much instead of saying, I really don't feel good. Like I can't see straight. I'm waking up at two in the morning thinking I'm going to pass out and half crawling to the fridge to get a glass of juice cause I feel like my blood pressure is falling, you know? So I really think afterwards people really thought I was fine and I wasn't.

 

I was home alone for two months. Obviously it's depressing. Like you're alone, you can't drive, you can't do anything for yourself. You know, your only like social experience, because no one's coming over, no one's coming to check on you, was to go into physical therapy. Like bless my physical therapist, Sandeep, if you ever hear this, you are an absolute legend.

 

But like that was my only outlet was to go to him and just talk to him and try to relearn. When I came out of surgery, I couldn't bend my toes at all on my left foot. My left foot wasn't really working. It was kind of dragging on the ground like before, but way worse. Um, so I was in PT for two and a half, three months. I think I stopped PT maybe seven months after surgery.

 

But that was the biggest thing, um, is that feeling that people just didn't get it and I didn't want to talk about it as well, which is… I can hold my own responsibility on that. Not wanting to open up, not wanting to complain, and not wanting to seem weak. You know what I mean?

 

Bri (16:19)

Where do you think that stems from?

 

Kelsey (16:22)

No idea. Probably anxiety I've always been like that though. I don't really open up and share on an emotional level. Coming from service industry, I'm very used to talking to people and talking to anyone about anything. I could talk to a brick wall if I get paid for it, right?

 

But when it comes to like digging into yourself and like really reflecting on how you feel and talking to someone else about it, there's this like intense fear that they won't view you the way you want them to, if that makes sense.

 

So I think coming out of surgery, I wanted to project that it was no big deal. I'm fine. Let's, let's work. Let's do this. And it just really wasn't the case. I wasn't handling it well. I was also on Keppra. Keppra rage is a very real thing. So I was incredibly testy and moody. Something I already am, but you know, really amplified that.

 

Bri (17:09)

Yeah, yeah. It's interesting. I have said this many times in different conversations, even with you, we spoke about this before, but, you know, we get medically cleared relatively quickly, especially with surgical situations. Maybe we are discharged with physical therapy or occupational therapy or things like that. But in my experience, I don't know anyone who's been discharged to go for mental health therapy or more quote unquote traditional therapy. And that's what jumps out to me when I read what you shared about life after your surgery and what that emotional side of things is. And I'm kind of curious, you know, how do you see yourself differently through all of this?

 

Kelsey (18:01)

That's probably the hardest question in my opinion. Something that we haven't really touched on yet. I don't think I wrote it down either was that when I did get diagnosed and trying to appear strong and like hopeful to everyone around me, when internally I'm just like kind of dead inside. Um, I was very convincing myself and the others around me that the tumor was the root of all of my issues. So I was very big on like, like I said, Googling stuff and reading about it. I was like, Oh, brain tumors cause depression. They cause anxiety. They cause people to act funny. You you watch Grey's Anatomy and you know she's acting crazy and all of sudden she has a meningioma and you're like yeah that's me. It's gonna be fine after I get this thing out. So I really went through those couple weeks before surgery and even after like convincing myself you know like when I get, you know, when I'm back on my feet, you know, it's all gonna be better. I'm gonna feel better. I'm gonna feel great. And in reality I probably feel a little worse because there is that that feeling of what if it comes back.

 

I talk about those ice pick headaches I get that just like are slamming against my brain. Every time I have one now, I think I'm to have a seizure. So then it's like that 30 second of a bursting headache, I'm just like, where do I need to be? What do I need to do? Who do I have to tell? You know?

 

But it is kind of, it's always in your head. You know what mean? There's not a day that I go through where I'm not thinking about what happened, how it's going to affect me. Will I ever be able to work out properly again, cause my foot screwed up? Can I ever stop taking goofy notes everywhere to get through a work day? Cause if I don't take the notes that I don't know what the hell is going on around me, you know?

 

So I don't know how I view myself differently. I think I gave myself a lot of delusion and it was kind of a reality check that I need to take accountability for my own mental health and not blame it on Zorg. That was the name of my tumor from Fifth Element for those who don't know.

 

Bri (19:44)

Nice. I love that. At what point did you decide to give it a name?

 

Kelsey (19:47)

Pretty quick. I've never really been someone who names things, like everyone names their cars and stuff. I'm very like analytical with those things, but I think it just like, in my opinion, added humor to the situation. You know, I had like a little schedule with all my pills and it had Zorg's face on it and Zorg's schedule, you know.

 

Bri (20:03)

Yeah. I know a lot of people who name their brain tumors. It's interesting. It's not something that I have done, not because of resistance or anything. I just never, nothing popped up in my head that seemed like, oh that sounds like a good name or anything like that. But it is a really great coping strategy for some because what is in essence happening there is there's personification and when you're able to personify this, there creates this natural separation of this is not me. This is not who I am. This does not define me. I can still continue on with who I thought I was becoming or the person that I'm working towards becoming. But it doesn't have to dominate my life. It can create some sort of natural separation and almost a relationship with the tumor rather than letting the tumor kind of take everything over and dictate a lot of stuff. How has naming your tumor helped you in your process?

 

Kelsey (21:04)

I think the biggest thing for me that I really talked about was just the avoidance and the jokes and pretending it wasn't happening. So I think just slapping the name on it made me feel like it, like it wasn't real and it wasn't really in my head. It was just this goofy thing in my house where I had to like monitor Zorg and make sure he was fed and, you know, like to take care of him so he can go away eventually and not invade earth like he wanted to.

 

Bri (21:03)

I'm curious. I feel like I can hear some of the listeners maybe saying or thinking, you know, this theme that's coming up around avoidance and I'm gonna put on this face like everything is okay and I'm fine and I'm moving on from this and I'm separating myself from this tumor and naming it and so that I can take care of it. And what have you found to be the challenge in that approach?

 

Kelsey (22:01)

I think, like, as they say with everything, like, avoidance is not a good strategy in life. I've always been someone, I bottle things up and, you know, six months from now I might throw it in your face and it's totally unhealthy. I fully acknowledge that. But I think I handled my diagnosis the same. I don't recommend the strategy of humor and laughter and, you know, when people do reach out and like, oh my God, I just heard. Are you okay? And I'm just making jokes.

 

I never really processed anything. And I still think I'm struggling. Even now, like what am I a year and a half post surgery, I don't really think I've faced anything. I've just avoided it. And yeah, there have been times where I've had complete meltdowns in a very private situation. You know, recently my job changed health insurance and it Cayman Islands, they can deny you coverage based on preexisting conditions.

 

We haven't really touched on that, but I did quit the job I was working when I was diagnosed and went through surgery because I couldn't, I couldn't keep up with managing a bar. I think it was a, I quit, but it was a very mutual split at that point because I couldn't, I couldn't do the job anymore. And I was an absolute emotional wreck. I think I had like mental breakdowns at work multiple times, just super embarrassing.

 

But yeah, my job changed health insurance. We were on an American based one, so when I signed up for that job, they didn't ask anything about pre-existing. So it was very easy for me to get insured fully without them ever knowing that I had a brain tumor diagnosis. So when they switched to a local company and unfortunately it was the same health insurance provider that I had when I was diagnosed and had surgery. So there's no hiding from them, right?

 

So they basically came back and said I could go on a lower plan and they would cover me. And that was it. I couldn't upgrade. I couldn't get better health insurance. And this health insurance is pretty god awful. I can only go to doctor 10 times a year. So even right now I see my neurosurgeon every three months that I have to go to labs one day and then see him the next day to discuss them. So just my neurosurgeon appointments alone is going to wipe, completely like wipe out my health insurance. I had a complete meltdown. I got that email. I went to the parking lot. I cried. I called my husband. Then I had to go back upstairs and act like nothing was wrong.

 

Bri (23:58)

What’s interesting is I think what it highlights is that, you know, everyone copes and handles with this in so many different ways and no one's way is right or wrong or good or bad. I think what's really fascinating and interesting to me as a coach is how do we develop a toolkit that I can pull out a hammer when I need a hammer, but I can pull out a wrench when I need a wrench rather than using the hammer for every situation. And so, you know, to what I think I had mentioned this earlier in our conversation, like avoidance isn't a bad thing. It's necessary in some ways. And so it's also kind of recognizing when is the avoidance helping and useful versus when is it maybe not as useful.

 

Kelsey (24:52)

I do think like recently, like honestly, even just signing up to do this was a big step for me. I think I told you before, I was like, she's never going to reach out to me, you know, whatever. I think just putting myself out there a bit more.

 

I don't even know if that's a coping strategy per se, but just the willingness to talk about it. Like the last week, even like gearing up to do this, I just like made casual conversation with my coworker who I'm very comfortable with and she knows what happened and everything. Just like bringing it up very light and conversation, just making a joke or like talking about it a little bit really helps. Kind of going back to the past when I first got diagnosed, I had told my boss, I was like, you can obviously tell the team because obviously I'm not gonna be back at work for three or four months. You can tell them what's going on.

 

And I've been making jokes with my management team already that I had a brain tumor so, you know, I think everyone didn't really believe it was happening, but I knew, you know?

 

And I was very much like, tell the team and then, you know, they started telling other people and then being a small Island, for those who've never been to Cayman, it's like living in a small town that you can't leave. If I go to the grocery store, I'll see seven or eight people I know. It's a social event. You know what I mean?

 

So then because it's a small Island word started moving around a lot that I had a brain tumor and then it kind of got twisted that I had cancer. So I ended up having to tell a lot of people about the diagnosis that I really wasn't ready to tell because I was avoiding and not willing to talk about it. I didn't want people to know. I didn't want people to know I was going to be in the hospital and having this major surgery. Towards the end, I got very shy and weird.

 

And that's completely contradictory. At one minute I was like, yeah, tell the people it's fine. The next minute I was like, no, no, no, I don't want anyone to know. I want this to be my struggle and my personal thing. I don't want people to view me in a certain way. So I really think learning to talk about it, like it's not some gross hideous secret that I'm holding in, has been probably the most and like best thing for me. You know what I mean?

 

Not being shy or being weird. It's, you know, people get surgery all the time. People get sick all the time. I don't, I feel like there's a stigma where we have to be embarrassed or weird about the fact that we got diagnosed with this. And it's such a luck of the draw thing. It's nothing we did. It's nothing I did to cause this. You know what I mean? So why, why are we holding a shame? Why are we upset or embarrassed? You know, it's, it's something that needs to be talked about more.

 

Bri (27:03)

I totally agree. And I especially agree with that so much for folks who are diagnosed with meningiomas in particular, because I often hear… In fact, just two weeks ago, I had someone say, that's a good kind of brain tumor. I'm like, whoa, this is not a comparison game.

 

Kelsey (27:19)

Yeah. I heard that. I heard that many times.

 

Bri (27:23)

Yeah, this not a comparison game. It’s all shitty. It all fucking sucks.

 

Kelsey (27:26)

I told people that. 100%. I was like, I was like, oh if I was going to get a brain tumor, this is the best kind I could get. So I'm lucky, but in reality, no, I fucking hate this. It fucking sucked ass. Nothing about this was fun or good and nothing about it was the good type, you know? Like, yeah, it was diagnosable and it was treatable and I'm in a good spot, all things considered. But no, it wasn't the good kind of brain tumor. There's no good kind of brain tumor.

 

Bri (27:50)

Exactly.

 

Kelsey (27:51)

It sucked, man. It really sucked.

 

Bri (27:53)

Yeah, skanxiety is real. I mean, so I had that experience with someone who said that and literally two days later, I was at a brain tumor event and one of the neurosurgeons who was speaking spoke directly to this point he said you know, you may not die from meningioma, but you die with a meningioma. This is something that you have to deal with the rest of your life. 

 

Kelsey (28:18)

I love that.

 

Bri (28:19)

And you have to have regular scans if you're really gonna stay on top of them. And so it is a different kind of coping than a terminal diagnosis or a malignant diagnosis.

 

I really want to do a whole episode around terminology and the way we talk about this and survivorship versus patient versus thriver versus warrior, caretaker, caregiver, care network, care partner, all these labels that we use. But, you know, one of the words I struggle with is benign tumor because, okay, medically speaking, sure, it's benign. But in reality, it doesn't feel benign to me because this has significant impact on how I navigate every aspect of my life.

 

Kelsey (29:02)

100 percent.

 

Bri (29:04)

I think that's something that a lot of people don't necessarily understand if they haven't experienced it themselves. And I certainly don't expect them to understand it. But sometimes I'd like to have more conversation around it so that we can try to understand one another better.

 

Kelsey (29:19)

I actually love that you said that because it's very true. It's kind of what I've been saying. You know, everyone moved on and it's because it was benign. I don't have cancer. It's been removed. It's been treated, right? But I do have all these lasting effects. I can walk to the beach in two minutes from my house, but now like I can't… I don't enjoy going to the beach anymore because there is something that's happened in this whole diagnosis where looking out on the water and that bright light, it triggers that headache I spoke of.

 

So I'm very nervous when I go to the beach. I like eat a few painkillers, you know, take a Benadryl. Like, I don't know anything that I think that might like help me relax because it's not only the headache that might happen. It's the anxiety that the headache does happen. And then it's the anxiety that if the headache does happen, is that going to lead to a seizure? I've never had a seizure, but I've been told I'm prime suspect to have one any second, basically before and after surgery.

 

Um, so I like what you said. It's, it was benign and it's gone, but the effects aren't gone with it. You know?

 

We're talking about vacation. I was, planned a boat trip and I was so anxious to go on a boat cause I was like, crap, we go on the boat. The weather's hot. It's sunny. The sun's bouncing off the water into my face. Am I going to be able to like handle that? And I'm stuck on a boat. There's no getting off the boat once you're on one, right? Can't say, Hey captain, I had a brain tumor a year and a half ago. Can we go back to shore and ruin everyone else's day?

 

Bri (30:33)

But I mean, these are really great examples. I mean, these are the calculations that we all do every single day of having to question like, okay, is this just a normal headache because I'm stressed and everyone has headaches every once in a while? Or is this a tumor headache that might become a migraine? Or, you know, is my vision blurry because I'm tired and it's been a long day? Or is it blurry because my tumor is pressing against my optic nerve?

 

It's always kind of wondering like, and at what point do I reach out to my doctor about this? Because I don't want to be that patient who I'm catastrophizing everything my body is telling me, but at the same time, I don't want to miss this again.

 

Kelsey (31:18)

Exactly.

 

Bri (31:18)

So these are the calculations that we do, not just on a daily basis, but multiple times throughout the day of, you know, can I participate in this? If I do, what are the things that I need to do to prepare myself to enjoy it? And then when I'm in it, am I really able to fully enjoy it?

 

It's just, it's like mental gymnastics all the time.

 

Kelsey (31:41)

Even recently, I experienced like vertigo for the first time and I've never had that before. Like people explain vertigo to you and you're like, that makes no sense.

 

But we were on holiday. Like I said, we had a really long day. was sunburned. I was exhausted. And we were walking to a restaurant. All of a sudden the whole world's like tilting and kind of spinning a bit. I'm trying to read the menu and I can't really read it. And I'm like, am I just completely wiped out because I'm not as active as I used to be. And I'm not used to being like, go, go, go from 9 AM to 8 PM. Or is this something like serious?

 

Then, you know, like I didn't feel that sick. I was just like a pretty dizzy and the world was moving around me, but it ruined the entire evening for me cause in my head I'm having an internal meltdown that I don't want to expose to everyone around me. Cause I'm like, am I dying? Is the tumor back? Am I about to have a seizure?

 

It's just such a like a mind fuck the entire time becasue any little symptom you have, you just, you're convincing yourself it's something to do with that. And I can't imagine 10 years from now. I hope this goes away. I hope I get to a point where I sneeze and my vision kind of blurs and I'm like, that was an epic sneeze and not like, crap, here we go.

 

Bri (32:46)

What do you wish that other people who haven't had this firsthand experience, what do wish they understood better?

 

Kelsey (32:52)

I think, maybe this sounds self-absorbed and I hope it doesn't. People that haven't had this experience or haven't been like, or are newly introduced to it, I think like listening and really trying to read the energy from the person who is struggling is the most important thing. I really struggled with like trying to manage other people's emotions.

 

You know, if I could tell when I got diagnosed, a friend of mine was really upset and stressed out and really worried about me, then I would try to make them laugh. You know what I mean? They weren't reading the vibe that I was just like in shock and like, haha, it's so funny, Zorg, whatever. They were just like, oh my God, but what if this happens? What if that happens? And I was like, no, don't, I don't want to do that. I don't want to do that. Come over, bring some lunch, let's chill. Like don't, don't bring those vibes to me, right?

 

I think it's really important if you end up in this situation, someone you know, you love, you're around, ends up going through this to just really take the cues from them and help them manage it the best they can and don't bring your own perceptions, your own energy, your own feelings.

 

Like it's okay if you're upset, go cry behind a closed door. But I didn't need that at that time. I didn't want that impending doom for lack of better words. I didn't want to be in that head space. I wanted to relax. I wanted to chill. I just wanted to accept my fate and see what happens. And I felt like a lot of people really struggled with that. And they wanted to get in this emotional head space and really dive into like my emotional state.

 

Maybe I should have, maybe I would have felt way better if I did, but I wasn't there and I wasn't ready. And maybe I got there eventually. And there are a few people I've opened up to and talked to about a little bit. But at the time I wasn't ready. So I really think people that aren't familiar with this, they get introduced to it, just like really let the person have their space while also being supportive. All I really wanted with my diagnosis and aftercare was someone to be there, just come over, watch a movie. Like we don't have to do anything. We don't have to talk about it. I just didn't want to be alone.

 

Bri (34:47)

What I'm hearing in that is a lot of it has to do with timing, right? Like it's not that we don't ever wanna hear these things from our loved ones or that our loved ones can't ever express how this has impacted them. But when I am still in the deep end, in the weeds, trying to figure this out for myself. I can't hold room for your emotions and your processing at the same time. And so it's not that I'm saying you can't have that, but it's more so like I need you to find another outlet for your own processing so that I can do what I need to do for me right now. One day in the future, I hope we can come together and have this conversation, but right now may not be the right time.

 

Kelsey (35:34)

It's so very true. And I honestly, I haven't had, I think there was some frustration with my family and the way things, I handled things, I guess, after surgery. Because they were in an emotional space. Like I'm the youngest child. I live far away from my parents. I don't see them very often. I haven't seen my parents since they left after my surgery.

 

But I think there was some frustration with them where they were really in their emotions. And that's fine. They're allowed to be. It is scary. But I wasn't there yet to meet that energy.

 

Bri (36:03)

Yeah.

 

Kelsey (36:04)

That's hard to talk about. But I do love them. I love them to death. But I wasn't there and I wasn't ready. I don't think we've had that conversation yet. And that's very hard to think about is that, you know, I've left them hanging emotionally, but emotionally I am still screwed and was incredibly screwed, you know.

 

Coming out of the hospital and, you know, going through the first steps of physical therapy. I remember my first physical therapy and he was like, ride this bike for two minutes. And I was like, I can barely walk across the room. What do you mean you want me to ride a bike? You know, so going through that and then just like the mental warfare on yourself, you know. 

 

It's really hard to manage other people's expectations and their feelings when you really need to focus on what you need. And that need might change every five minutes. And I think that's where I really struggled was, one minute, I want to talk about it and the next minute, I want nothing to do with it.

 

Bri (36:50)

Yeah. And sometimes I don't even know what I need.

 

Kelsey (36:55)

And I'm still that way. Exactly 100% and I think that's the biggest struggle.

 

Bri (36:57)

I mean, it's upending. It is an upending experience. Everything… everything about life is through a completely different lens now. How do you think about your future?

 

Kelsey (37:09)

I really don't know. I hope for my future in particular that I can get to a point where I'm not thinking about this daily. It's only, if it happens, it happens. You know what I mean? Same way it happened the first time. If a recurrence happens, if I go through this again, it is what it is. But I hope for my future is that I'm not dwelling on it.

 

I can go to the beach and I get a headache and I'm like, it's gonna be fine. Like you've never had a seizure. You're not gonna have a seizure. It's just a headache and it is, it is what it is. That's your life. You know what I mean?

 

Bri (37:39)

Yeah

 

Kelsey (37:40)

So I just hope that wherever life takes me in my new career path and my marriage and my family and everything else that I can just accept it, live with it, and better communicate down the line where I'm at, what I need, and who I am now, if that makes sense.

 

Bri (38:00)

Yeah, absolutely. How has this experience so far rewired your mind?

 

Kelsey (38:06)

Whoo. Besides like the obvious physical defects of the feet and the headaches and all that other stuff, I think before surgery and just in my life in general, I think the whole world's a little self-absorbed, right? But I do feel like I get very caught up in like how things are happening around me and how I'm perceived and how I can do better and how I can do this. I think post-surgery, I've been really trying to focus on being present in a moment and be more understanding and see where people are coming from.

 

Kind of like I talked about earlier with my experience post-surgery, you know, everyone's got something going on, whether it's you, it's me, it's a brain tumor or your boss sucks, you know, something small. Everyone's going through something and there's no point to be so angry and frustrated or not listen or tune into what that person's feeling. Cause whatever they're talking about, whatever they're saying, they're trying to open up to you and they're trying to speak on something, even if it's coming off as a joke.

 

I think I'm really just trying to slow down and be more present with the people around me and be open and not judgmental. Everyone's got shit.

 

Bri (39:15)

Yeah. I love that perspective. I am so, so grateful for you, Kelsey, just especially around your vulnerability in this conversation and sharing so openly about the things that we often don't talk about in this. You know, we're very comfortable about naming our diagnosis and we did this treatment and all the medical side of stuff, but it's this, this other side of things that we are often feeling and dealing with alone that can create a feeling of isolation. And I just am so grateful for your willingness to be open and vulnerable. And I imagine that there are listeners who are connecting and resonating with what you've shared and may want to connect with you. How can people get in touch with you if they want to?

 

Kelsey (40:03)

You can find me on Facebook, because I'm old. It's Kels Ingram is the tag and on Instagram is just my full name, Kelsey Burcombe. I would love to connect with more people. That's a huge reason why I've decided to do this. There is not really a support networking Cayman for this. I don't know anyone who's gone through this and I've tried Reddit. I'm in the meningioma chat on Facebook, but I really just, I would love to connect with people and I'd love to talk about it. And I'd love to talk with people that have been through it and get it.

 

And hopefully my story resonates with you and if it doesn't even still reach out let's just talk nonsense and talk anxiety, talk procrastination. We can share tips with each other, you know?

 

Bri (40:43)

Well, I will definitely put those socials that you mentioned in the show notes. And thank you again for your willingness to join the conversation and connect with others.

 

Kelsey (40:54)

I'm glad I did.

 

Bri (40:57)
Thank you for joining me for another episode of Rewired Minds. Full show notes, resources, and a transcript for today’s conversation can be found at rewired-minds.com.

If you or someone you know has a brain tumor story to share, I'd love to hear from you. Whether you’re a patient, survivor, caregiver, family member, or friend, visit rewired-minds.com to learn more about being a guest on a future episode.

This podcast is a one-woman labor of love and it’s an honor to bring it to your ears and connect the brain tumor community. If you enjoyed this episode, please take a moment to rate, review, and share with someone who might need these stories. 5-star reviews and sharing really make a huge difference in keeping this going!

I'm Bri Salsman, and I'll be back next time with another life changing brain tumor story.