In this episode of Rewired Minds, Bri Salsman speaks with Samantha, a brain tumor survivor who shares her nearly decade-long journey with a meningioma diagnosis. Samantha discusses her initial reactions to the diagnosis, the impact on her family dynamics, and the emotional challenges she faced during recovery. She emphasizes the importance of open communication, the long-term effects of her experience, and offers advice for those newly diagnosed. The conversation highlights the complexities of navigating life after a brain tumor and the need for support and understanding.

• Samantha was diagnosed with a meningioma in 2016.

• The initial phone call about her diagnosis was brief and shocking.

• Family dynamics changed significantly after the diagnosis.

• Samantha's recovery involved both physical and emotional challenges.

• She felt the need to appear strong for her children.

• The importance of open communication with family during tough times.

• Post-surgery recovery was fast but lacked proper guidance.

• Samantha struggled with feelings of anger and frustration post-diagnosis.

• Support from friends and charities was crucial for her recovery.

• It's essential to take time for oneself during the healing process.

 

Resources

Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms

Connect with brain tumor organizations here: https://www.rewired-minds.com/braintumorresources

 

Connect with Rewired Minds

Website: rewired-minds.com

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

Instagram: @rewiredmindspod

LinkedIn: https://www.linkedin.com/company/rewiredminds

 

Connect with Samantha

Instagram: @SammyJohns75

 

Be a Guest

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

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Disclaimer

The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

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Transcript

Bri (00:02)

The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation.

 

Guests sometimes use medical terminology. So I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. The full list is in the show notes.

 

Most importantly, take care of yourself as you listen and process.

 

Bri (00:37)

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 Samantha. Why don't we start off by letting listeners know a little bit about yourself.

 

Samantha (00:51)

My name is Samantha. I am 10 years into my journey. I was diagnosed in 2016 with a meningioma on my left frontal lobe and it was going towards my optic nerve. So I was pretty much immediately sent to the surgical route because they didn't want to hang around and wait for it to tangle in the optic nerve.

 

And I was put on the emergency surgery list and four months later, I had my first brain surgery to remove the tumor.

 

Bri (01:26)

Thank you for that context. I'd love to go back before diagnosis and learn a little bit about what did life look like for you before this news?

 

Samantha (01:37)

I was a very, very busy single parent. I was raising two boys and I was very involved with the local school. My eldest was in university his first year, so he was 18 nearly 19 and my youngest was just starting college, so he was 16.

 

And I was chairperson of an anti-bullying charity as well at the time and I was also fostering for an animal charity because I'm a cat lover. And, yeah, my life was very full, very busy and, and very happy actually.

 

Bri (02:11)

And so what were the… what triggered you to get this checked out?

 

Samantha (02:16)

Well, mine was actually an incidental finding. I have a condition called a central tremor, which means that I have an action tremor. It's not like Parkinson's where it consumes you and like is life limiting. You are often born with this condition, which I was. But it had gotten to the point in my life where, I needed medication to help control it because when I was trying to do things, actions write, hold a cop, eat, cook, my tremor was so bad that I was struggling and getting clumsy and dropping things. And it was just becoming a little bit dangerous.

 

So I had actually been referred to the neurologist to get all of it checked out. And they did a basic family history and decided from that, that they were going to send me for an MRI just to be on the safe side.

 

No one was expecting anything to come back, including me.

 

Bri (03:05)

Wow. Truly incidental.

 

Samantha (03:06)

Absolutely.

 

Bri (03:07)

Do you recall the moment that you got the news and how that set with you?

 

Samantha (03:17)

Vividly. Unfortunately, this is something I don't think I will ever forget. And I really wish I could say I was the only person this has happened to. But unfortunately, over in the UK, it is getting more and more common. So I had the MRI done with contrast. And three days later, a third of January, to be exact, I was given a phone call by the neurologist who informed me that they had found a mass on my brain and were referring me to neurosurgery immediately. And that if I hadn't heard anything in two weeks, then I was to contact her back and she would chase it up for me. And that was pretty much it.

 

Samantha (04:01)

We spent less than three minutes on the phone call.

 

Bri (04:02)

Wow.

 

Samantha (04:02)

And when I hung up, I kind of just sat there a bit dazed wondering if I dreamed the entire interaction or if it did actually happen. And it was, yeah, it's something that I will never forget. I don't think anyone should ever be told news like that over the phone, let alone a phone call that lasts less than three minutes. It's really quite devastating.

 

Bri (04:24)

I can imagine you probably hadn't quite processed the news, let alone formulated what your questions might be in that amount of time.

 

Samantha (04:37)

Absolutely. I mean, I knew nothing about tumors in general, let alone a brain tumor. And of course they don't use the word tumor at that stage, they say a mass. It can be a cyst, it can be a blood clot, it can be a tumor, as mine was. And we hadn't even gotten into the conversation of, know, is it dangerous? Is it cancerous or is it non-malignant? There was just so many questions and, as you quite rightly say at that stage, you absolutely have no idea about any of it.

 

Bri (05:13)

Right. And who were you with in this moment?

 

Samantha (05:18)

I was home alone. It was 8.30 in the morning. My son had already left for college and my eldest was in uni many, many miles away from me. So I took that news alone. The only presence I had with me were my two kitty cats. I was fostering at the time a bunch of kittens and that was it. That was it. There was no one.

 

Samantha (05:38)

I spent a good couple of hours after that phone call still trying to convince myself it actually happened. And the only glimpse that I had that it was real was the fact that I had an unknown number incoming at that time on my mobile phone. That was the only thing to reassure me that I hadn't imagined it all. I hadn't dreamt it.

 

Samantha (05:57)

I didn't do anything for a long time, just trying to sort of take it in and acknowledge that it was real. And then what did I actually want my next move to be? What are you supposed to do in that moment?

 

Bri (06:13)

Right. And so what did you decide as the next step?

 

Samantha (06:18)

I decided to call my doctor's office and ask the receptionist if she could relay a message to my GP in the hope that a letter had already been emailed through or something registered on my notes to tell my GP what's happening.

 

And then to ask if they could give me a call and maybe just kind of like reassure me or at least give me some kind of information about what to expect and what was going to happen next. And she did. She called me back a couple of hours later. She invited me in at the end of surgery that day. And yes, she confirmed that the phone call was real. That actually, unfortunately her letter didn't tell her any more than what I'd already been told. That there was a mass and I was being referred to neurosurgery.

 

She reassured me as best she could. Told me that maybe I should, tell a friend or a family member, and sort of have somebody to just sort of talk to about it all. And then started all the other questions then, you know, who do you tell? How do you tell them? What do you tell them?

 

Bri (07:27)

Right, right. There's so much to take in. And you're still processing and trying to understand and figure it out, but also thinking about other people who might need to know in terms of building a support for what's to come. So when did you decide to share with your sons and how did you share with them?

 

Samantha (07:31)

Well, it was, it was really tricky because I had one son that lived at home and one son that was just starting university and just sort of, you know, branching out in his own life. And I, I didn't want to drag him away from that. So very early on, I made the decision that I was going to wait until after I'd actually seen the neurosurgeon and knew what was happening.

 

I wasn't going to do to them what had happened to me. Yeah, I wasn't going to tell them over the phone or through a text message or an email. My kids deserve better than that and I was like, I'm going to get them here. Even though I knew my eldest would know something was wrong because, you know, he knew I would never just get him over for the weekend I thought it was still better to take that, that risk as it were and tell him face to face, which is what I did. I don't regret that decision at all.

 

The hardest part was waiting for the information myself and then from that deciding exactly what I was going to share with them because I didn't want them to have all of the horror of what was probably going to happen.

 

Bri (08:52)

How did you walk that line of sharing information that would be useful without scaring them, so to speak?

 

Samantha (09:01)

Well, I was quite lucky in the sense of my eldest was going into healthcare. He was trying to be a physiotherapist and he was doing biology and that sort of thing. So I knew he'd know some rough basics about what to expect and what a brain tumor actually means. But still, I guess I just stuck to not what to expect afterwards or how it might change me or anything like that. I literally stuck to, they found a tumor. They're hoping that it's non-malignant and unfortunately because of where it is I will have to have brain surgery which of course is very scary but don't forget these people do this for a living. You know, these are experts, these people know the risks and if they've decided that this is the best option, then, you know, we have to believe in them and we have to sort of follow the road that we're on.

 

It was difficult because my boys are, you know, they're older and I think just wanted to sort of be as strong for me as possible. My youngest didn't take it well at all. He was very upset. But my eldest, as I said, worked in healthcare and I think they'd already been having speeches about how to handle bad news and giving news that isn't to be expected with patients and yeah, he was pretty stoic about it all, which to be honest probably concerned me more.

 

Bri (10:22)

Yeah.

 

Samantha (10:23)

But you still have to take it at their pace, you know, as much as you've got your own pace, they have theirs and you, you just have to take it as it comes and see what happens.

 

Bri (10:41)

This is a different dynamic because this isn't a spouse or a friend. These are your children, which, as you mentioned, are young adults at this point, but still your children. And so can imagine how challenging this must have been to navigate this and the impact it probably had on your connection with each one of them individually, but then also as a family as well.

 

Samantha (11:08)

Yeah, it was definitely a balancing act for all of us, I think, actually. As much as they wanted to be there and support me, I was very clear that I didn't want them to put their lives on hold because of what was happening. I didn't know how long at that point I was going to wait for surgery. And also at that point when we were having this discussion, I did not know what to expect after surgery, what my life was going to look like. Because that's something that the surgeons really don't tell you about at all.

 

Bri (11:36)

So let's talk about that. Coming out of that surgery, what do you recall about that experience?

 

Samantha (11:50)

I think the most poignant thing that I remember is that while I did wake up in the recovery room, my next sort of main memory was actually waking up in the ICU, which I wasn't expecting. I was expecting to wake up on the ward. But apparently my blood pressure had gone rather high. And they were quite concerned and had decided that the neuro ICU was the best place for me. And that was pretty scary.

 

My face was black and blue. And again, no one warned you about that. They don't tell you that you're going to wake up swollen, looking like you've gone 10 rounds with Mike Tyson. There's none of that warning. There's none of those, the little things that really actually are quite scary. And you wake up covered in wires and tubes and all these monitors and that are all over you. And then, worse you're in an ICU instead of a normal ward and no one's really sort of explaining why because you've got people just worried about keeping you stable and making sure that you're okay which obviously is very much appreciated. I am not having a go at any of the medical staff at all.

 

Bri (12:50)

Right, right.

 

Samantha (12:52)

It just would have been nice for someone to sort of stick their head above me where I could see them and say, “you're okay. We just needed to make sure that you were going to be okay and that's why you're here.”

 

But unfortunately, there just doesn't seem to be time for that anymore, which is a shame.

 

Bri (13:16)

You know, as you're describing this experience waking up in the ICU, I'm thinking back to that original phone call that you had too as well that was three minutes in length where you're also not getting much information. It seems to be at least with these two phases, a commonality in your experience.

 

Samantha (13:33)

Yeah, yeah, it definitely was. There was a lot of information and things that could have been done differently. But I think until you're in the journey, until you're actually ready to sort of maybe take a step forward and take charge of it a bit more, because you understand that this is not a one and done thing, you are not gonna have one surgery or one round of treatment and then be back to your old self.

 

You know, this is not something that you just move past. This is something that really becomes a part of your life. And definitely something that stays with you and doesn't change in any way, shape or form, other than the fact that it's always changing.

 

Bri (14:16)

So what has that post surgery recovery, what was that period for you?

 

Samantha (14:21)

Fast is probably the word I would use. My best friend came to see me 24 hours after I'd had surgery in the ICU. They brought me food and we were sitting and I was eating and she was like, trying not to panic with how awful I looked and a drain sticking out my head.

 

All sorts of scary stuff and big staples and all of that sort of thing. And she was there trying to have a normal conversation with me. And my surgeon came in and said, “you're doing really well. Everyone's really pleased with you. I think we can discharge you home if you want.:

 

And I was like, “excuse me?”

 

And my brain was at war with itself because I will not go into many details, but spending a night in the ICU, being reasonably coherent and aware of what's happening around you is not a pleasant experience.

 

Bri (15:11)

Hmm.

 

Samantha (15:12)

It's actually very scary because you're listening to them try and save people that are in beds next to you and not all of them make it. And it's horrifying to be aware that you're in the same place and are they expecting that risk from you? And I really just wanted to get out of there. And I decided when she said those words that I was not going to argue with her.

 

So I was unplugged, unhooked. The physio came and walked me around the room to make sure that I was stable enough. And I was discharged less than two hours later.

 

Bri (15:57)

Wow, that was fast. Very fast.

 

Samantha (15:59)

Very fast, you know, and my friend was really concerned and I was like, look, I just, cannot stay here. They haven't got a bed for me on the ward because they gave that away because I'm here. So it's stay here or go home. And I can't do another night here if I have a choice. It was all very weird after that because I expected I think at the time that someone would come and talk to me about discharge about what I should do at home, what I shouldn't do at home, about pain medication, about side effects to expect that will be quite normal and some of the things that I should look out for that are perhaps not normal. And because I didn't go from ward to discharge, because I skipped that, there was no conversation.

 

I went home and for four weeks I just sort of made it up as I went along. I took my painkillers. I was just trying to like, take it easy, be careful, not carry anything heavy, you know, and just try and sort of find some kind of normality while I was looking like a panda, basically, because I really did look horrific. And you don't realise that until you're standing in front of your own mirror looking at yourself afterwards and you're like, my goodness. How am I not scaring all the neighbourhood children?

 

Bri (17:20)

What was most, the most useful kind of support that you received in in this period of time?

 

Samantha (17:26)

Honestly, my best friend. She kept checking on me. She kept calling. She would bring the groceries that I couldn't get to a shop to get an order. She would arrange to come round to check on me to just make sure that I was okay.

 

There was nothing else really, you know, family would phone, they live over 300 miles away from me at that point. So they couldn't just like drop by, you know, it was phone calls and that sort of thing. And I didn't want to do FaceTime or Zoom or anything like that because I looked so horrific. I knew it would probably scare them more than it would help and I did the same with my children, you know.

 

I spoke to them all the time by phone, but I never actually let them see me in those initial days. Because I didn't feel it would be fair.

 

Bri (18:06)

Do you remember the first time you were comfortable being seen again?

 

Samantha (18:10)

Yeah, I think it was kind of like going for a coffee with my best friend. I'd had my staples out, all the bruising had gone, all the swelling had gone. So you couldn't really tell much that I'd had a big surgery, but obviously my scar was still visible at my forehead. And as much as I combed my hair forward, the wind would whip it back and sort of,

 

Bri (18:37)

Hahaha

 

Samantha (18:39)

So yeah, she just took me into town and we went to a little coffee shop and we sat outside because I just needed fresh air. And trying to have what would class as a normal British conversation about the weather and shops and the price of food. And, you know, just try and try to make it as normal as possible for me.

 

When inside my brain was screaming, why are you outside? Why are you doing this? Why are you putting yourself at risk here? Because it was still scary. It was still in my head that something quite major had happened to me. And I was still trying to sort of process it in my brain.

 

Bri (19:12)

What did you draw on from within yourself to push past those thoughts in your head about why are you doing this? You shouldn't be doing this. This is too risky to take that step to go have coffee with your friend because it sounds, like this is what you needed at that moment was to get outside and get fresh air and get some sort of normalcy, but your brain's telling you an opposite message. How did push past those internal thoughts?

 

Samantha (19:53)

To be honest, I think I just ignored them. Because after brain surgery, your whole brain shifts. It's no longer about, oh, I'm going to do this. This is how I'm going to do it. And off we go. It then becomes about a planning session for everything.

 

What meds do I need to take with me? Do I need to prepare beforehand? You know, do I need to rest? Do I need to have a lie down or a nap? Do I need to make sure that I've had enough to drink? Do I need to eat before I go? And then, do I need any support when I'm there? Is my friend who's with me going to need to hold on to me to make sure that I don't fall over? Is she going to need any special information to make sure that I don't go sideways? And is she going to need to be told anything to look out for in case I can't speak my needs and something goes wrong?

 

And at the same time, you're like, if I throw all of that at her, she's not going to want to have coffee.

 

Bri (21:00)

Hehehehehe

 

Samantha (20:46)

She's just going to want to like have coffee at my house because it's safer.

 

Bri (20:56)

It's easier, right? Yeah, yeah, yeah.

 

Samantha (21:09)

And it's like, again, it's a war in your brain because you want to do something. Is it safe to do that? And if it is safe, at what point do you decide that your brain's just been overcautious and you need to override it? You need to push past the fear and just do it.

 

Bri (21:21)

I love that you bring that up because I think that's so important that there's the medical recovery and the medical clearance, let's say, that you get from your doctors But then there's a whole other side of recovery that clearance doesn't come from any medical or clinical professional. It's where we feel comfortable to, I'm gonna say go back, but we all know there is no going back to life before, right?

 

Samantha (21:48)

Right. Right.

 

Bri (21:50)

So I'd love to learn a little bit more about that side of your recovery experience, of redefining your life and what things would look like moving forward.

 

Samantha (22:34)

To be honest with you, that didn't really happen until the end of the year after I'd had the other surgeries from the emergencies that came up from that original surgery.

 

And then I actually did branch out and look for support from a charity who I found. I found Brainstrust, who is a small UK charity over here that help people with brain tumors and their families as well. And it was only sort of hearing other stories and hearing what are the people who've been through. That one, I accepted that how I was feeling was normal and I wasn't alone.

 

And two, that I still had the control over things. That it might not be the same control that I had before I was diagnosed and before I had the surgery, but I still had control over how I felt and how I handled things. And I could spiral and let things go out of control, or I could take some kind of control back and follow a path that I wanted to be on.

 

But it took me a very, very long time to accept that and to sort of deal with it. And if it weren't for the support that I had from that charity, I honestly don't think I would have gotten anywhere close to having any kind of a life again.

 

I certainly went through a period where I was just surviving. I wasn't living, I wasn't having a life. I was doing what was best for everyone else because I didn't want to disappoint them or make them unhappy or make them scared again because what I went through was scary.

 

I felt that the support they'd given me needed to be returned and that actually my feelings and my emotions didn't matter for a while. What mattered was just showing them I was okay.

 

Bri (24:23)

And how okay were you really?

 

Samantha (24:27)

I wasn't okay at all. I really wasn't.

 

Bri (24:30)

That's what I find so interesting is that so many patients and survivors that I've connected with over the years, this is such a common theme, showing strength outwardly for others' sake while internally really struggling, which I think is the largest thing that kind of contributes to this feeling of isolation, of no one understands.

 

But to your point, once we get connected with others who have similar experiences, even if it's not the same diagnosis or the same treatment, but just that connection of a brain tumor, no matter what kind, it's a different type of connection because there's no explanation. 

 

We just look in each other's eyes and we just know. We don't need to explain. We don't need to ask questions necessarily. We just know. There's just an automatic connection there that allows us to be whatever we need to be and show what we've been holding on the inside.

 

I'm really putting you on the spot with this one Samantha, but how do we create space where this doesn't have to be the way that recovery is, where we as patients and survivors are putting on this brave face, but internally we're really struggling.

 

Samantha (25:51)

Here's the thing, and I think this goes across pretty much every illness and diagnosis, including mental health issues overall, is that we are so taught from an early age that we have to be strong for everybody else around us.

 

Bri (25:33)

Mmm.

 

Samantha (25:33)

That it's actually not okay to show how you feel when actually the best thing you can do is be open and honest about how you're really feeling and to understand and accept that it's okay to not be okay.

 

Bri (25:50)

Absolutely.

 

Samantha (25:52)

If you can't be open with your friends and family, then really what's the issue there? Why is it that you're trying to be so strong? What is it you're trying to compensate for?

 

Bri (26:04)

What's also popping up in my head about all of this is the language that we use around survivorship, particularly the words like warrior and survivor and thriver. These are all words that can be very motivating and serve their purpose and have good use in some contexts. But sometimes I wonder how much they contribute to this perspective of this face that we feel is expected of us.

 

That we, you know, we're fighting this battle and we're a warrior and we're strong. And I don't know how many times someone has told me you're such an inspiration and inside I think, but I don't want to be, like, I never wanted to be an inspiration. This is just my life. I didn't sign up for this.

 

Samantha (27:14)

Yeah, I mean, the amount of times you're told that you're brave, that, you know, they couldn't have gone through it. And I'm like, but actually you don't know, because when you don't have a choice, you do get through it.

 

Bri (27:00)

Yes.

 

Samantha (27:00)

So, you know, one, don't put yourself down by saying that because you are. And two, stop trying to make me out to be some kind of martyr or, you know, someone who chose this path to be strong and brave and inspirational and that because as you said we didn't choose it. It chose us and we're just trying to get by and survive the only way we know how.

 

But if we made it easier for people to talk then actually surviving would be much easier.

 

Bri (27:35)

Mm-hmm. I couldn't agree more. Your boys are coming back to mind as you're sharing this. How has your relationship evolved with them over the last 10 years since you had that original conversation with them?

 

Samantha (27:47)

It's been tricky. My youngest, unfortunately, because he was here, got to see all of the drama that unfolded. My complications, my extra surgeries, he got to see it all. And I, while I was very grateful at the time, sort of looking back now, I kind of wish he hadn't have seen how greasy and awful it got at times.

 

My eldest kind of escaped that a little bit. I mean, I talked to him. He would always ask the medical stuff because that was who he was. But we just kind of distanced, I think, my eldest and me overall, because I think he felt it was easier for him to deal with it if he wasn't directly involved and didn't have to see me through it.

 

And obviously it kind of helped because, you know, he watched his brother literally go through it. And I couldn't hide that. I spent so much time in hospital towards the end of that year that for a long while, my son was the only one I saw because the hospital wasn't a local hospital. It was a major hospital that I'd been moved to because of my condition.

 

So it was like two trains and a bus ride away and people just couldn't drop everything and come see me every night. So that in its own was isolating. And I mean, it did, it made my relationship with my youngest son very close at the time. And we still are extremely close.

 

But my eldest, it kind of did the opposite. created a big distance, a big gap, between us. Even now as I approach my sort of 10 year mark, and I'd love to be able to say, know, say all of this to him, but he's, he's not in a place where he's ready to listen.

 

I think he's just struggling so much with the fact that he lost a big chunk of me during the time that I was diagnosed and then was in hospital for most of that year. Instead of me being there as a supportive parent while he was at university for his first year, we kind of have this big gap where I wasn't there. I wasn't traveling to see him and sending him money every five minutes because I just wanted to make sure he was eating properly.

 

Every phone call was drilled down to how are you doing today? Have they decided on any more treatment? You know, have they changed your antibiotics? You know, I mean, what's happening now? How are they trying to fix this? And I think that put a lot of stress on him and he found the only way he could deal with that because he wasn't there.

 

And again, this is what I mean by, we teach our kids whether we mean to or not about being strong and about being this beacon of light for us than the next generation up. But actually, really at some point you need to take them aside and say, you know what, this is really crap what's happening. And it's okay for you to come to me and get angry and really frustrated about what's happening because I am too. That conversation never happens. Not until you've been in the journey for a while and understand it a bit better and are ready to sort of like challenge things more. And definitely during that first part of the journey, you are not prepared for any of that.

 

Bri (31:13)

Right. I mean, this is the ripple effect of everything. I'm just imagining this calm glass-like pond that this rock gets dropped in the center. And it doesn't even have to be a big rock, but nevertheless, there are ripples that every area of that pond is impacted by this rock getting dropped in. Some more quickly, some not as quickly, some more intensely, while others not as intensely, but this a lifelong impact with relationships, with work, with finances, this impacts really every aspect of our lives for years, if not decades to come, for some of us our entire lives.

 

What holds you back from having this conversation with your son?

 

Samantha (32:05)

At the moment, distance. He's still living up there, where he is and I'm down here. And I do feel that those conversations are meant to be had in person. And I did try, last year, to go and see him and, and talk this out and, have this conversation to try and make things a bit better for us. But he wasn't ready.

 

You could see and hearing his voice, he just, he wasn't ready. He was still so full of frustration and anger because I don't think he'd sort of looked at the bigger picture yet.

 

Bri (33:14)

And that's such a really good point because while we're on our journey, others in our lives are on their own journey of processing all of this as well. And sometimes our paths of recovery and processing merge and at other times they're parallel and at other times they're even diverging from one another. And so finding those opportunities where we can merge together, it's a delicate dance. Because certainly just as we don't want to be forced to have conversations we're not ready for. I imagine that's the same for everyone else in our lives too. It's a challenge for sure.

 

How has this rewired your mind?

 

Samantha (33:54)

Hugely. I mean, let alone the sort of medical rewiring that I had through the different things that happened, the complications and that sort of the, the mental rewiring has been huge. My, behavior and my personality had a complete, a complete switch around. I mean, I've always been quite stubborn, but after, after my surgeries, I got angry for like about a year or so. I was just so full of anger, at the world, at the situation, at the treatment I'd received, how help and support was just lacking in general. And yeah, I just, I was snapping at everyone.

 

And I still have moments now where if I'm not taking proper care of myself, the anger sneaks in. I get frustrated and I don't even hear the change in my tone of voice anymore. And I still have to have that conversation with present friends now because I'll say something and they'll look at me like, why are you yelling at me? And I'm like, I'm not yelling. And they're like, yes, you are.

 

Then I have to take a step back and go, wow, was I? Because I didn't feel like I was. I didn't feel like I was angry or frustrated. I didn't feel like I was raising my voice or even changing the tone of my voice. But I clearly was if everyone else in the room had done the same thing.

 

It's taken me a very long time to sort of think more before I speak so that I know I'm in the right place and I know it's coming from the right place with what I'm trying to say.

 

And really it's kind of been the last two years on its own that that has really sort of took more of an effect because I took a big restock of my life last April and was in a conversation where this was being discussed, the difference between surviving and living, and doing what you want to do for yourself. And it just sort of like dawned on me that I was still actually doing what everyone else wanted. And that was why I was so miserable. That was why I was so unhappy all the time and so depressed, was because I was just doing what kept everybody else happy, thinking that that's what made me happy.

 

Bri (35:42)

How do you think about your future?

 

Samantha (35:43)

Now. I think I'm like anyone else on this journey. I'm waiting for the next scan to tell me that it's not okay again.

 

Bri (35:50)

Mm.

 

Samantha (35:51)

And that we're back riding the wave. You know, I had this conversation and I still remember very clearly with the surgeon that I saw originally about my first brain tumor. We're going to get it out and you're going to be fine. Everything's going to be good. You'll go on with your life. You'll live your life.

 

And I was like, Oh my God, that's amazing. And of course we all know that is not what happens. But you believe them. You know, these are people that are a lot more well-educated than I was about things that I know nothing about. So you believe them. That everything is going to go back to the way it was.

 

Bri (36:29)

If you had the opportunity to speak with someone who just got diagnosed with a brain tumor, what would you want them to know?

 

Samantha (36:37)

I think it would be quite basic really because I think they're probably quite overwhelmed with the news themselves remembering what it was like for me. So I think I would tell them to just take it one day at a time and to not always listen to other people. Do your own research, do your own fact-finding missions. There's nothing wrong with it. As much as people tell you, don't Google things. Actually, there are still safe places online, charities, deal with this all the time. There are still safe spaces where you can go and find out what to expect in this journey.

 

And also just to tell them that it is a journey. They're not going to be told it's gone. You're cured. It's vanished. This is a life journey and you will get through it, but you have to give yourself some time.

 

Bri (37:24)

It is journey indeed. And I do have quite a few resources on the Rewired Minds website, for those who are looking to get connected with a reliable organization to get some answers and support from people who live this, who do this as their work every day, and can offer really great resources.

 

Samantha, if people resonated with your story and would love to learn more from you, where can they find you?

 

Samantha (37:53)

Pretty much on most social media platforms, but you can find me on Instagram.

 

Bri (38:00)

I will include your profile in the show notes for people if they want to get connected with you. Thank you so much for your willingness to share your story and to be vulnerable and to share especially the parts that might be tough or that we don't often talk about. Particularly sharing about your relationship with your sons and how those have evolved and sharing the reality of the long-term impact of this.

 

These are the conversations that I hope will spark other conversations with our listeners and their families and friends as well. So thank you so much, Samantha.

 

Samantha (38:37)

No problem at all. Been lovely talking to you.

 

Bri (38:46)

Thank you for being part of the Rewired Minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com/podcast. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com/guest to learn more about collaborating on a future episode.

 

This podcast is a one woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community.

 

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