Let's Talk About Brain Tumours

Episode 61 - The Power of Friendship

Season 3 Episode 61

Our focus in this episode is on friendships and close bonds. How does a brain tumour diagnosis affect our loved ones and who can we turn to for support or advice when we don’t want to worry or upset those closest to us?   

To answer that question, Andy Tudor talks to five women who were all treated at the same hospital for the same meningioma diagnosis but who only met through one of The Brain Tumour Charity’s online peer support groups. They describe that group as "invaluable", "a lifeline" and as "each other's aftercare." 

What's more, four of them have teamed up to take on The Twilight Walk together on 22 March - roping in some of their relatives too! Their efforts will mean The Charity can continue to fund things like our support services as well as much needed research into brain tumours. This is the Brighton Brain Aches fundraising page.

We'd also like to the thank the Puzzle Bored Cafe in Brighton for allowing us to record this episode in their Quiet Room. 

Audio Editor: Elliot Broad

Producer: Jo Porter

Contact: podcast@thebraintumourcharity.org

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If you would like to speak to a member of our Support Team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Intro music and promo

STACY: I think we're each other's aftercare as well, aren't we? To a certain degree, because the aftercare from the hospitals is, is severely lacking. So you have to find your support in people that have been through it now. 

ANDY: So welcome back, everyone, to the Let's Talk About Brain Tumours podcast. Today, being Valentine's month, our focus is on all types of relationships and close bonds, and in particular, how do brain tumour diagnosis and treatment affect our loved ones and those who we care about, and who can we turn to for support if we don't want to worry our loved ones and our close relatives?  So, to help answer that question and to talk about all matters to do with relationships and brain tumours, I've got five ladies with me who met through the brain tumour charity’s online support groups. So, let's get started. This could be an interesting podcast, because I'm outnumbered five to one, but that's fine! Let me introduce Sally, Sian, Stacey, Helen and Madeleine.  

SPEAKER: Hello. Hello.

ANDY: So you've all had a similar diagnosis. I understand you've all had, or have meningiomas.  

SPEAKER: yes, yeah, yeah, 

ANDY: And part of the link, I guess, is that you all had treatment at the same hospital. I guess that's near Brighton, is it?  

SIAN: Yes the Royal Sussex County Hospital, yeah, yeah, we were all treated there. 

ANDY: Okay, that's cool. And what's more, four of you and your families are taking part in The Brain Tumour Charity Twilight Walk next month under the title of The Brighton Brain Aches I understand. 

SPEAKER: Yeah, I think Helen came up with that one.

ANDY: Well, I'll be there next month as well, so hopefully I'll get to meet you all in person. I would think about joining your team, but you can probably all walk a lot quicker than I can! 

LAUGHS 

ANDY: I'm sure the training you've done will will pay off.  

SIAN: We're just gonna wing it!

ANDY: I mean, for anyone who's listening to this and wants to come to The Twilight Walk, it's a lovely occasion. It's a really good day full of just lots of inspirational people all, you know, fighting for the same cause. So I'll give your fundraising a plug towards the end, so let me know if I forget. 

SIAN: Okay, thank you. 

ANDY: So what's interesting is that you've all had a similar diagnosis, but you've all had very different routes to the diagnosis in terms of symptoms and treatment itself. So what might be nice is to hear from each of you, if you don't mind, about your diagnosis and your treatments. So, I don't know if there's one of you that wants to go first, who likes to get the first word in?  

SALLY: Okay, so it's Sally. I was diagnosed first back in the summer of 2019 but that followed about six or seven or even more years of migraines, unexplained. Put down to stress or being over 20, they tell you, it's the menopause. It's something to do with that. But then I was found unconscious by my husband one afternoon, taken along to Eastbourne hospital, essentially sent home, told I've had a seizure. Hear back from us in a few weeks. They forgot. They filled in the wrong form, so we then had to traipse down to the doctors and then get seen by a specialist. And then I was bounced between Eastbourne, Hastings and Haywards Heath hospitals to see who was going to stop me and see me. And then, eventually, yeah, I was referred to Mr. Alan Food at the end of 2019 and they confirmed I had a grade one meningioma. So that was actually that was 2020 and then, of course, COVID hit, so I was on watch and wait - a lot of waiting, not much watching - because of the situation. And then I was referred for surgery, but that was cancelled twice.  

ANDY: If you don't mind me asking, what effect did that have on your mental health? Because, knowing you needed surgery and it being cancelled while there was something growing in your head, I can't imagine how that feels. 

SALLY: Yeah, well, because they said, oh, it's not an emergency. It's, you know, it's kind of optional surgery. But then it got to, oh, it is needed. It was, it was really stressful, and I had a job that I absolutely hated, which didn't help. So COVID was actually quite good for that, because it meant that I left my job and just lounge around in vineyards now (laughs), selling wine and stuff. But yeah, it was difficult. And obviously my children are in their 20s as well, so we didn't really want to tell them. The first operation, we told them, and everybody got all kind of on board with what was going to happen, and then it was cancelled. So when I went for the operation in May, we didn't actually tell them, because my son was on holiday, and so I phoned my daughter and said, oh, mum's in hospital, just coming out of surgery. So because she gets really upset about things. So it was a bit strange. And also, my husband was married 30 odd years ago, and his first wife also died of a brain tumour. So he was kind of, you know, not wanting to talk about it too much. So yeah, it was, yeah, strange.

ANDY: So, has it affected your relationship do you think? Not necessarily with your husband, but certainly with your daughter, has she kind of forgiven you for not....? 

SALLY: I think she did. She just, I mean, she messaged me and said, I know your secret, and she's actually, I said how did you? 

Andy: 8:03 - Oh, that's good, brilliant. So how did you find out about the, the brain tumour charity and the online support groups?  

SALLY: It was actually, my, it was Howard who went on the internet when we got back from the hospital, because he likes to research everything. So he found out about meningiomas and the charity, because I think I was sat there, you know, head in ostrich position, trying to ignore what was going on. As, you know, some some of the other ladies may have done as well. And then, yeah, just signed up and found it was actually, it was quite a good, good place. I kind of lurked for a bit, didn't post anything. Then I realised, yes, I'm not the only one. It's strange, people at work when you told them. Some people were like, you must, you know, never darken our doors again. And others were, oh yeah, that's fine. Okay. Carry on, make your cup of tea, which was, obviously, the nicer approach. 

ANDY: Yeah it's interesting how people react differently, I guess. Thanks for that Sally because I think what you've talked about is actually quite common, from what I've heard as well, of people sort of going through what we've gone through. So thanks for that. And by the way, if the listeners can hear any strange noises in the background, it's because the ladies have gathered in the excellent Puzzle Bored Cafe in Brighton, where they're meeting having a coffee. So if you do hear any noises or door slamming, then please bear with us, because it's it's good to get them all together in such a nice environment. Okay, should we move on to Sian? Do you want to tell us about your experience?  

SIAN: Okay, so I originally, well back, actually, in 2019 I had migraines for a very long time. So the first thing I did was go and get my eyes tested, just to make sure there wasn't anything there that could be causing it. That was all fine. So they carried on. I went to the doctor in 2020 with the migraines and I was getting these very sudden flashes of really intense head pain, if I sort of, you know, bent down to pick up my dog's ball and throw it, and it was sort of like, really, you know, makes you just, like, hold your breath and stop until it passed. And the doctor was a bit sort of just kind of shrugged their shoulders. Weren't really sure. She did send me off for just like a bog standard blood test, but she also asked if there was anything else going on, and I was concerned about my oldest daughter at the time, who wasn't well, so it kind of then just got batted off as that I was worried about my daughter. And, you know, it was, it was anxiety, basically, which I didn't understand. But I also did say to her that it's a real physical pain. You know, this pain is a really physical pain, but so that was that really.  

So I spent the next four years spending a fortune on different pillows, thinking I've got a neck problem. I did yoga, sports massages, just, you know, and then fast forward to the summer of 2023, I noticed that if I was out walking, I'd be walking along the prom with my husband. I'd look to the left or the right, come back to the beginning, and I just I'd wobble. My balance was really, really off. The head pains were just coming on without even any exertion. I could be lying in bed at night and it would suddenly come on. And if I looked up to try and do anything, I can remember one time we were trying to flip the mattress on the bed, and I was looking up like this, and I just really went over backwards. You know, so I went to see the physio at the surgery who did an exam. And basically he said, I think we need to do a neurology referral. He spoke to the duty doctor.  

ANDY: It was the physio that referred you?  

SIAN: The physio that referred me, yeah, he did speak to the duty doctor, and she said, just get a CT head. They can look at the cerebellum. So I then got a phone call a couple of days later to go for that, and I went in for that on a Wednesday evening in November, and was told I can't go home. So that was a real shock. Yeah. So we went the scan room to A and E with the radiographer, got signed in and everything. Me and my husband. We sat down and we looked at the waiting time. We were like, it's five hours. And then no sooner than we'd said that, I actually got called through. We got taken through resus, through Majors into a cubicle and had the door shut, and we had to sit there, and, yeah, it was just, you know, and that's when it....

ANDY: At that time, had anyone mentioned the word brain and tumour together? Or were you still in the dark? 

SALLY: I mean, the radiographer obviously was a little sort of, he didn't want to say too much. But I knew they'd obviously seen something, because halfway through the scan they stopped it and had to put a line in so they could use contrast, because they'd seen something. We just, yeah. And then he was like, well, you've got a lot of hydrocephalus, and they might want to put a shunt in and there’s sort of, there's a lesion there. And, yeah, I mean, we didn't have to wait long for the doctor, I must admit, but it was just, you know, you've got a tumour. We think it's a meningioma, but you know, we're just going to have to wait and see. So that was about half past five, and I sat then in A and E till about half past three in the morning, waiting for a bed on the emergency ward. My husband had to, on his own, tell the children. I mean, we've got two grown up children, but our daughter, our youngest at the time, was just 12 coming up 13. So that was a bit grim, yeah. And then I then waited in Worthing from the Wednesday to the Monday evening, and then I got taken over by a paramedic crew to Brighton on the Monday evening. My lovely consultant, I'm going to give him a plug, on the Tuesday afternoon, so we met him on the Tuesday afternoon, and he cleared his list, and he operated on me on Wednesday. So it was a week, seven days later, and he said, you know, you'll be in theatre all day. Yeah, yeah. Then you'll have a couple of days on critical care. Blah, blah, blah, yeah. So it was very just, as I say, seven days from finding out to to the surgery, which was, and I've never had anything done before, absolutely nothing, so brain surgery was really scary.

ANDY: How do you feel now, are you recovered?

SALLY: I've recovered I'm doing really well. I feel really lucky. I'm back to work part-time and I'm a nurse so that was quite weird, being on the receiving end of it. I have been, I do feel I've been very lucky. I've, you know, with how I've recovered. I mean, it's taken a good year. I think definitely.

ANDY: That's good, because that gives others I know we're all different. But that does give others hope that you know when you're told you’ve got a brain tumour for the first time. I know my reaction was, how long have I got? But then you look at it, find out a bit more about it, and you think, hang on a minute. It's not quite that bad. And to hear someone like yourself who's made a, you know, a really good recovery it just gives hope to others that others can hopefully do the same. So how did you find out about the brain tumour charity, the online groups? 

SALLY: I didn't actually find it until I was about six weeks post op. I was just Googling, really, just Googling afterwards, because I, of course, I didn't the opportunity before. And found the brain tumour charity, and then found the meningioma group, and it's been an absolute lifeline. Um, just so I wish I'd found it sooner, but I was six weeks post op and I did a post, actually, and I think Madeleine commented on my post, because she was a Brighton patient as well, and Stacy did. And then we just all got chatting like that, really, 

ANDY: I guess it was nice to have find people that could relate to what you're going through. Because I think a lot of us feel as much as talking to families and, you know, friends love us and want to support it's hard to, almost impossible, unless you've been through it, to really understand what it's like. So I guess was that part of almost like a relief for you guys, when you sort of found each other and started chatting? 

SALLY: I mean, definitely for me, it was massive. Because, as you say, it's just, with the best will in the world, you know, your family, they just, until you've been through it, it's like nothing else, isn't it? Yes, yeah, you know your family, and your friends know you, and they know how to help you as the person. But then these online groups, yes, people who've been through it know about your symptoms and your surgery and repercussions of that. So the two are both really important. It can be a very lonely journey, can't it? Because you know, although your family and your loved ones support you in your day to day life, they don't, they don't actually understand what's going on in your head. Yeah, and it's, it's not, you know, with being diagnosed with a brain tumour, it's not as if you can bump into somebody in a shop and they've been through the same thing as you it's, you know, slightly few and far between really. It's, yeah, it's just, can be a very lonely existence. And I think without the support group, you would be a lot worse off. I think you definitely feel quite lost, quite lonely, yeah, yeah. 

ANDY: I should mention as well that my wife has been an absolute rock, and still is an absolute rock for me. I was operated on eight years ago now, so I'm kind of getting on with life since, but it still has its challenges, and she and my kids as well, but she keeps me, keeps me going, to be honest. But then the Facebook groups, I found that it was nice. It's a bit more camaraderie and also, dare I say, dark humour. I don't know what you guys are like, but I find, yeah, I find the humour helps. And if people have been through it, it kind of gives them a reason for being a bit more.. I mean, one example for me was my daughter. After my surgery, she said, "Oh, I always knew you only had half a brain Dad!" That was actually quite funny. But I felt, obviously, you know, I think in the Facebook groups, that's what it sounds like, brings you guys together as well. Is that not just the shared bonds, but also the sort of, the camaraderie. 

SIAN: Yeah, definitely, lots of dark humour that’s definitely getting through. My husband cracked some awful jokes when we were waiting in in A and E, and we did share one of them with one of the nurses, and I don't think she found it very funny!  

ANDY: I tell you what. We'll do another another podcast all about the dark humour, and then we'll have to put a little guidance. Alright, thank you Sian for that. And should we go to Madeleine next? Do you want to tell us about your sort of diagnosis and treatment? 

MADELEINE: Yeah, my story is a bit different to the others in the fact that I've been ill for like, a really long time, actually, since age of 16, after I got two viruses, and then I never recovered from them. I was eventually diagnosed with ME, and I struggled on with that for like, years, and then in about, I think, 2018 I started getting much, much worse, where I was completely bedbound and housebound that I couldn't walk. And I kept phoning the doctors and asking them to help, but they just kept saying, Oh, it's the ME, and you're just having a really bad, like, period of time, like, and it you will get better and stuff. But I just didn't, I just kept getting worse. My heart was racing every time I stood and I was fainting, and I just kept getting more diagnosis, but no treatments or anything.

I spent loads of money on seeing different doctors and buying things that I thought would help, and nothing was making me better. I just getting worse. And then I saw in the paper that they were doing a study at Brighton University and  Sussex universities hospital, and they were looking for people that had me to do a research study to look into the causes of it. And so they said in the article that they would do a brain scan and check your heart and things like that. So I thought, This is my chance to get so many tests done and find out what's actually wrong with me. And so we went there. I could barely walk. I don't even know how I did it. I had to be dropped right outside. I had to take lots of rest, and everything leading up to it. And then they did so many different tests. I had to go a couple of times, and everything was fine. And then they took me for the brain scan, and and that was going to be the last thing of the day. And then they said I could go home, and they said you'll be in the brain scanner, like maybe 30 minutes to an hour. Um, so Well, I went in, and everything was fine. And then it just seemed to be taking much, much longer than they said, and they just weren't bringing me back out again. And and I was just waiting and waiting, and when they finally did get me out, they were very serious. And before that, they've been laughing and joking, and everything had been fine. It's not a good sign, is it? No, I even said to them, Why was I in there so long? Was everything okay? And then they just said, Oh, we're we're still looking. So they wouldn't tell me anything. But then they suddenly said, Do you mind some blood tests? And I was thinking, Well, why? You said I could go home. Like, what are you looking for? But I didn't even ask, because I kind of just had a feeling and almost didn't want to know. So I said they could do the blood tests.

 And then I even said, oh, like, when did you want me back for the next part? And they were kind of like, oh, we'll let you know. And it was suddenly like they didn't want to talk to me. So then I went home, and I was even saying to my family, I think they're going to phone me and say that there's a brain tumour. And all my family were like, no, don't be ridiculous. It's not going to be a brain tumour. And I just had a feeling, and I kept saying no, and even, like in the night, I was lying awake thinking, I know they're going to phone it and say, I've got a brain tumour. And then a couple of days later, my phone rang, and it was the doctor that had been doing the study, and she said, Can you come down today, and we need to talk to you. And I said, have you found something? And I said, Can you just tell me on the phone? And she said, No, I need to tell you in person. And she said, it's an abnormality, but she wouldn't say what. Absolutely that made it even worse by thinking of what is it going to be? And yeah, so she just said to come down, and I just felt really sick, and I had to wait till the time, and I was just feeling really, really sick and kind of knowing what I'm going to say, but in my head, I thought it was going to be cancer, or I was even thinking maybe Ms or something like that. I just didn't know, because all she'd said was abnormality. And so I went down, and then the doctor, there was two in the room, and they just said, Yeah, we found two brain tumours. So it wasn't even one, it was two. And so they at first, said that they were pretty sure it was like a meningioma, but they were going to have to refer me to double check. And so I just went home with that. 

ANDY: Can I just ask was it a relief, almost, because, from my perspective, when I was diagnosed, I at the time, I thought I was either having a stroke or suffering from dementia, or there was something, else. And when they actually said you've got a large cranial mass, we think it’s a meningioma after the initial shock I was almost relieved that at least I I knew there was something that was causing the symptoms, and therefore I might be able to do something about it. 

MADELEINE: Um, it was a relief at first, because everyone always automatically thinks, oh, as long as it's not cancer, it's going to be fine. So as soon as they said it wasn't cancer, I just thought, Oh, it's fine then, but obviously not realising that even if it's not cancer, it can still cause so many problems, it's still very serious. So it was initial relief that it wasn't cancer, but then as like time went on, I realised it's still very serious. It's still causing problems, and you still have to potentially go through surgery. So it's not an easy. So, yeah I went home, and they referred me to the hospital, and I had more scans, and then met with the consultant, who said that he thought that we would wait for one more scan, and if at the next scan it had grown, then we would have surgery. But then, obviously, COVID happened, and so I didn't get any more scans after that for four years. So, oh, wow, yeah, because he said, come back in two years and be on watch and wait for two years, and then we would decide if, then that one, if they weren't, that we'd have surgery. But then obviously COVID happened. So it ended up being actually four years. And by the end of the four years, though, I was really, really ill. I was falling over, falling to one side, like I kept banging into the wall when I was like, walking up the stairs and things, and my knee was really, really bad. And yeah, I was just having so many things like pressure feelings in my head, and it was just made me really sick. And so then I really pushed for them to give me the scan, and then they finally did in it. Then I got pulled in, and he said, Yeah, they've grown both of them have, and it's best to get surgery. 

ANDY: That was almost two years, arguably, of unnecessary symptoms you were having to deal with in daily life that probably could have been avoided if you'd had a scan earlier.  

MADELEINE: Yeah, when I was waiting for the surgery, it ended up being, I think, nearly a year and a half of waiting for that, because there was doctors' strikes, and it kept getting cancelled. I think I had a third attempt, because it had been cancelled twice before. So it was very stressful, because every time I'd like tell my family, and I'd get ready and prepare myself and psych myself up, and then it just kept getting cancelled. So it was just really stressful. And obviously I was feeling worse and worse as well. So it was, like many life in between while I was waiting, because I just wasn't well.

ANDY: So Madeline, thanks for that. How did your surgery go and how are you feeling now? 

MADELEINE: Yeah, the surgery went really smoothly. It was really straightforward and I recovered well in terms of my head healing and things like that. But unfortunately, in terms of the fatigue and the other things that I was experiencing before, I still can't walk very far and I'm still like lacking in energy. So now it hasn't been like the miraculous recovery that I was hoping for. But I think maybe I put all my symptoms down to the brain tumours and maybe it was to do with my other illnesses I already had. And obviously the head pain and things have all gone now, which was to do with the tumours. 

ANDY: And has it helped you connecting with the others? You know, coming back to the theme of building relationships with people that I guess otherwise you would have never got to meet. 

MADELEINE: Yeah, it's been really good. I often feel like a bit left out in life because everyone else is like healthy and out living their lives. And obviously I've spent a lot of time isolated and not being able to do the same thing. So it's nice to meet a group of people that have all had their experiences and even though we've all been through the same thing, we've all got different stories to tell. It's really nice listening to every one of them. 

ANDY: Oh, that's really nice. That's cool. All right. Thanks Madeleine. That's lovely to hear. So should we go on now to Stacey or Helen? Which one was who wants to talk next about their diagnosis and their treatment? 

HELEN: Well, I'm Helen and I'm nearest the mic so...

ANDY: There you go. it was planned that way. OK, yeah, pleased to meet you by the way, Helen. And yeah, if you tell us about your sort of how, how you got to, to meet the others, that'd be great. 

HELEN: Hey, Andy. So I started off with tingling in my left hand when I was I was 40 and I put it down to carpal tunnel. My mum had it when she was 40. The doctor said, Oh yeah, that sounds like carpal tunnel. I was referred to a specialist and they said, yeah, that sounds like carpal tunnel. So then in January 2023, I had surgery, decompression surgery for the carpal tunnel. But unfortunately the symptoms didn't go. They got worse. The rest of my fingers started tingling, went to my other hand. So OK, yeah, it wasn't carpal tunnel. And then I started getting strange sensations. My right arm felt like it was cold. I had the sensation it was cold, but to touch it, it wasn't cold. The same thing started happening down my right leg and into my feet, had strange pressure around my torso. And in March -probably a bit of a taboo for some people - but I started going into urine retention and then by June I had to have a catheter fitted which I ended up with for six months, which wasn't very nice. So whilst all these symptoms were going on and I was losing strength in my hands, my GP didn't know what it might be, thought maybe MS so referred me to a neurologist. In June 23 I saw the neurologist who did various tests and said I think you need to go for an MRI, maybe there's an infection in your spine or some swelling in the spine. But again didn't really know what it could be. 

ANDY: Can I ask, was the MRI of the spine or the MRI of your head?

HELEN: It was my head and the top of my spine, so cervical spine.

ANDY: Ok, so it did include your head.

HELEN: So then at the end of July. It was the first day of the school summer holidays. My children were 10 and six at the time. So the first day in school, summer holidays, I had my MRI in Haywards Heath in their lovely mobile units. But by that point I could hardly walk. I had a walking stick. I had really bad balance issues. I must have looked like I was drunk when I was walking to school to connect my children. Honestly, I wasn't! So I had the MRI. It was the last one of the day, about 6PM, came out of the MRI and I was told to go straight to A&E. Oh, don't worry. This is just normal like this, OK? Really. Yes. My husband had taken me to the MRI. He'd driven back with the children and was putting them to bed. I couldn't drive at the time, so my sister had come to the hospital to pick me up to Take Me Home and ended up sitting with me in A&E. And then at about 10:00 that night, the doctor in charge of A&E sat me in a room and said they found a 2cm mass growing at the bottom of your brain. It's crushing your spinal cord. 

ANDY: Oh, wow. 

HELEN: Yeah. And so that was it. That was, oh, OK, I've got a mass. Is that a brain tumour? Is it cancer? We don't know. Two days later I had another MRI, this time with contrast, and then they told me actually, yeah, it's a 3.8 cm tumour. It's likely a meningioma. It was a foramen magnum meningioma and was growing at the bottom of my brain, crushing my spinal cord, which was why I was having so many problems walking with my limbs. The next day I met my neurosurgeon, and she told me, yeah, it needs to be taken out and we'll do surgery in two weeks. And that was it. 

ANDY: So how did the surgery go? Did it relieve any of the immediate symptoms? 

HELEN: Yeah. So my surgery was initially delayed because there were no beds in HDU. So it ended up another two weeks, which I think in the grand scheme of things, waiting a month for surgery wasn't too bad. It took a lot longer than they expected. My husband was told it would, well, we were told it would be about eight hours, but it took 14. The surgeon phoned my husband after midnight to say they'd finally finished. 

ANDY: But how are you now then? Are you, sort of have the symptoms come back at all or have you? Has that relieved them for you? 

HELEN: All of my post surgery symptoms have gone, which is fantastic. It's brilliant. Unfortunately, there was issues during surgery. I had a a CSF leak and had to have a lumbar puncture. Some of my cranial nerves were damaged because they were worried that I might not be able to swallow. So I was in hospital for 17 days in total. I'd say it took about a year for me to feel back to about 80% of who I was before any of my symptoms started. And now nearly 15 months later, I feel, yeah, I'm good now. 

ANDY: Well, that's, that's good news. And how did you find out about the Facebook group? 

HELEN: I'm different to everyone here. When I saw the specialist nurse on my first meeting with the surgeon, she gave me some information sheets and it mentioned the brain tumour charity on there. So I just....

ANDY: That's interesting. Out of out of all of us, you're the only one that seemed to actually be given information at the time. And I didn't even have a specialist nurse when I had my surgery. But there was a Macmillan nurse based at the hospital and she told me about the charity. That's how I found out about it. So it's, it's a shame and in a way it's interesting that only one of us was actually told about the charity. 

HELEN: So, OK, I think there were details on the pre op sheets I was given, but obviously I've been waiting three years by then. So I googled the The Brain Tumour Charity and found the Facebook group and ordered the online pack and yeah, the rest is history. 

ANDY: How did you get to meet the others on there? Was it just by chance seeing some of their posts or was it, what caused the connection? 

Helen: I think it, you know, we've mentioned where we're from and is there anybody from Brighton or you pick up that somebody's had surgery at Brighton? Oh, I had surgery there. 

SIAN: Yeah, that's it. I remember seeing your picture and thinking that's Brighton. 

HELEN: And, yeah, we got chatting. 

ANDY: Oh, that's good. OK, Thanks, Helen. That's brilliant. And last but not least. Stacy, do you want to tell us about about yourself? 

STACY: I feel that I was a lot luckier than everybody else. I had symptoms for about two years before my diagnosis, but I was going through losing my dad and so it was easy to pass off the headaches as as other things and the migraines. And then I was feeling my head one day for some reason and felt quite a lump. I couldn't remember bumping it so I gave it a couple of weeks to see if it would go away and then went to my GP, had a fantastic GP. She called in a senior GP and then another senior GP was called in. They all had a feel of my head and then they and the GP was very honest with me. She said I think you've either got a brain tumour or you've got bone cancer. 

So within two weeks I was up in Haywards Heath seeing a neurologist. I actually have a letter from the neurologist telling me that I definitely didn't have a brain tumour and that all my symptoms were down to being female. OK, yeah, would give me an MRI scan just to be sure. So I think the MRI was a week later and then got called in for a CT and then another MRI and then I met with my neurosurgeon, Dr Swoon!

SPEAKER: Is that his real name?

STACY: No, that's just what we call him. 

ANDY: I'm sure he won't be listening to this podcast. 

STACY: We'll send it to him. LAUGHS. On the 18th of November, two days after my daughter's 21st birthday, he sat me down and told me that I had a rather large meningioma that was eating and destroying my skull bone. Yeah, so I would need to have the tumour removed and a titanium plate now replaces about half of my skull. 

ANDY: Oh, wow, that's interesting. So, how, how's that been? Have you had any reaction to the titanium plate itself? 

STACY: No, no, I think, touchwood, I've been quite fortunate. Yeah. You know, when it's when we first have your operation, you're very conscious of the fact that it feels a little bit heavier than your head, sort of, normally would. I had surgery at the beginning of June 2023, so with a shaved head, I had to be really careful of being in the sun because the plate would get hot. And then we have the opposite in the winter. I'm always walking around with a bobble hat on because if the plate gets cold, it's like major brain freeze!

ANDY: Yeah, I've I've heard others. I mean, I've, I've got three clips - nothing as extensive as yours. But I find that even with those I have to have something on my head almost every single time I'm out. So in the summer I tend to wear a baseball caps so I don't get overload from the sun as well. And in the winter, it's like you said, normally a bobble hat or some of that, but it just, it feels like there has to be something because if it's metal and it expands or contracts in a slightly different way to the skull, which it will, it just feels uncomfortable, doesn't it? 

STACY: Yeah, it does. It's, you know, you, you kind of learn to live with it. And now sort of 18, just over 18 months on, it's a part of me. ... My daughter did say that she'd watched enough Grey's Anatomy that if I wanted to get on the kitchen table, she would do it for me, so.... Thankfully I put her off!   

ANDY: Ok, thanks for that Stacy, and in terms of you as a group, where did the idea for the Brighton brain aches come from? And and doing The Twilight Walk itself?

SPEAKER: Helen has done the walk before. 

HELEN: Yeah, I did The Twilight Walk last year. That was, it was six months to the day since I've had my surgery. So it was a bit of a challenge to myself to see if I could do it. And I did the five kilometre walk (oh well done) and then it was Sian’s idea for this year. When the twilight walk for this year was announced, Sian said is anyone else up for it? So we decided to do it.

ANDY: No, that's really good. And, and is that going to be that, will that be the second time you meet or, or do you have you got together sort of physically before or is it all being sort of chatting online? 

SIAN: We've met once before today, haven't we? Before Christmas? Yeah, this is our second meeting in person. We do chat quite a lot as well. We've got our own little sort of group, haven't we, this messenger group to sort of chat about booking the walk and setting up our pages and, you know, etcetera. 

STACY: We also share the good and the bad with each other, don't we? You know, I had good news in January. I'm now cleared for yearly scans. So you share that with the group because it's like you're, well, that's good. Yeah. And we're all there to support each other if we're having a bad day. 

ANDY: And I'm, I'm guessing you would. But would you recommend other people not necessarily to join your group, but if they find someone perhaps with a shared interest, be that the same hospital or the same neurosurgeon or even the same part of the country to, to set up, set up the sort of group that you set up?

STACY: Definitely, Yeah. It's, you know, it's a very lonely journey that we're on. And if you can find people that not only have been through a similar experience to you, but people that you actually get on with, I mean, it's brilliant being able to all support each other and just know how each other, how you feel. Because sometimes it's hard to find the words to explain, perhaps like a physical symptom that you're feeling, isn't it? But you just say, oh, you know, it's this on the back of my head. And everybody goes. Yeah, totally get that. It feels slightly squidgy, but it's a bit numb. 

SPEAKER: Yes. You feel feeling. 

STACY: That would be your swampy lump. 

SPEAKER: Yeah. Swampy, but tight. Yeah. That was it. 

SIAN: It's been invaluable for me. Definitely. Yeah. You know, to, to A, find the group and then, B, to find this more local group, you know, of ladies. Because as you say, like, you know, with your family, you know, that my husband was amazing and I'm sure all the other ladies, you know, had the same. But it's just with the best will in the world, they just don't know how it feels. And actually, I'm quite glad that they don't know how it feels because I wouldn't because then you'd have to go through it. But, yeah, it's just having that, that, you know, that that understanding. 

SPEAKER: Yeah. You wouldn't wish it on anybody, would you? 

STACY: No. And, you know, I really feel for anybody that is starting on this journey now because it is such an emotional roller coaster. You know, you have some days where you're feeling fantastic and then some days where you're on the floor drowning in your own tears. But it's good to share that in in a nice way.

ANDY: And it sounds like, I mean, dare I say it's a bit of a silver lining perhaps that yeah, yeah, you've been through some really, really tough times. But you wouldn't have met each other otherwise, would you? 

SPEAKER: I guess no, that's right. 

STACY: No. And I think we kind of bond through trauma as well, don't we can be a bit dramatic. 

SPEAKER: That's true. 

ANDY: That's, I think it's quite a common where, where people, if they have a shared trauma, then there's that bond there that's really hard to put your finger on almost, but it's definitely there and it's real. And it sounds like with you guys that it's, it's actually helping each of you through your sort of troubles and tribulations in the same way. 

STACY: I think we're each other's aftercare as well, aren't we? To a certain degree, because the aftercare from the hospitals is, is severely lacking. So you have to find your support in people that have been through it now. 

ANDY: That's absolutely great. Thanks guys for your, for your time and for being so open and, and honest about your journeys as well. At the risk of sounding emotional, I'm finding it inspirational that you guys kind of found each other and that you're able to support each other in that way. I think it's absolutely brilliant. So should we finish off with a, a plug for your, for your twilight walk next month? How can people after hearing your, your journeys and what you're going through, and the camaraderie you have, how can people support you? 

SIAN: In terms of fundraising, We've got a team page, a just giving page under the Brighton Brain aches, but we've also got our own sub sort of profile under that. So we're all sharing it to our Facebook pages with a little nudge every now and again to friends and family to cough up. And it's going quite well actually. We've got a good, good amount so far as a group. I think we're over 1000 pounds now. 

SPEAKER: Most of that is down to Sally, really? 

SALLY: No, I had a very generous donation from my son's workplace. So that set us off really. 

ANDY: That's absolutely brilliant. OK, well, I'll just sign off by saying thank you so much for your time. I've absolutely loved the conversation. We've probably gone on way too longer than we should have done, but thank you all for being so inspirational and and sort of for the message of camaraderie and the benefits of relationships. And hopefully I'll see you on March the 22nd. 

SPEAKERS: Yeah, that'd be great. 

Thank you. 

All right, take care. 

Bye. 

ANDY: And if anyone wants to support the the Brighton Brain Aches, we'll add a link to the Just Giving page in the show notes for this podcast.