Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Episode 36: From Diagnosis to the Unexpected: Ellen’s Story
2 Playsin 1 day
In this episode, Jacqui is joined by Ellen Chaplin, a type 1 mum who shares her family’s experience of diagnosis, diabetes technology and resilience.
Ellen’s daughter Charlotte was diagnosed with type 1 diabetes at six years old, just days before Christmas. What began as a routine appointment quickly became a life-changing hospital admission, marking the start of an intense and emotional learning curve.
Ellen reflects on navigating diagnosis in a rural area, learning to trust diabetes technology and finding balance around food, independence and school life. She also shares the impact of an unexpected brain tumour diagnosis of her own and what it meant to hand over her daughter’s diabetes care while facing major surgery.
This episode is a powerful reminder that life with type 1 diabetes unfolds alongside real life, messy, unpredictable and deeply human.
Further Resources:
Type 1 Foundation Website
Follow us on Instagram
Join the Facebook Group
If you'd like to share your story with our podcast listeners, please email: podcast@type1foundation.com.au
Recommended
Transcript
Introduction to Type 1 Club Podcast
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Reliance on any information provided by this podcast is solely at your own risk.
00:00:23
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about Type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers, and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion, and support, no one should ever feel alone in managing type 1 diabetes.
00:00:54
Speaker
Welcome to the Type 1 Club.
Guest Introduction: Ellen Chaplin
00:01:01
Speaker
Hello and welcome to the Type 1 Club podcast. I'm your host, Jackie Kidman. I'm a Type 1 mum to Harvey who was diagnosed at the age of seven back in June 2022.
00:01:13
Speaker
i am really excited today to welcome a guest named Alan Chaplin. She's reached out as she's also a type one mum and there's a little bit of a weave to her, an extra layer and another element as there always is with these stories. And she's very graciously offered to share some of that stuff and some of the things that they have learned along the way as a family. so Alan, thank you so much for coming onto the podcast.
00:01:41
Speaker
You're welcome. It's my pleasure.
Charlotte's Diagnosis Journey
00:01:43
Speaker
So, Ellen, you've got a type 1 daughter named Charlotte. So would you like to tell everybody about Charlotte's diagnosis?
00:01:52
Speaker
Sure. So my daughter Charlotte was 6 when she was diagnosed. It was fourteenth of December 2018. 22, leading Christmas, really busy time. She was just finishing kindergarten. She'd actually just had their like class Christmas party. So lots of treats. It was a really great day. And I actually had so much going on at the time we had as Christmas just sort of is, but we had my son's Christmas party at his daycare in that evening as well. But I'd managed to get an appointment for Charlotte because I'd been a bit concerned that she had a UTI. She'd had some UTIs in the past and been investigated and never really had a cause. It was just something that had, that happened for her.
00:02:41
Speaker
She'd had a lot of different little things growing up, like food intolerances and a bit of anxiety and a lot of ongoing stomach pain, you know, and stomach pain is such a hard thing when it's mixed with, is it this anxiety? Is this a few You know, has she got a UTI? You know, those symptoms kind of cross over a lot of different things. And so she'd been getting a sore wee. She had a sore wee and she had a sore tummy.
00:03:03
Speaker
And those were the symptoms that I'd noticed. And I thought, okay, maybe she's going to be UTI. And we're in a rural area here. And I just thought, oh, Christmas is coming up. I better just get this checked before everything shuts down for Christmas. And then if it is something, I won't able to you know, get anybody. Yeah.
00:03:19
Speaker
And so I'd managed to get an appointment just through the nurses. Like there wasn't a doctor's appointment, but they could just put her through the nurses and test
Hospital Experience and Treatment Decisions
00:03:25
Speaker
her wee. And I thought, you know, we've done it a lot, 10 times. They'll just dip it. They'll tell me if there's anything there, send it away. And I nearly canceled because we were so busy. And I just thought, no, look, I'll go, I just have to get this done.
00:03:37
Speaker
And we went in there and like, she wasn't unwell. Like it wasn't anything where I was like, oh gosh, I've got to get her to the doctor. It was just, oh, look, like this is probably something I just need to get sorted out. And so I took her in and got her wee dipped and the lady said, oh, has she got diabetes? I said, no, like I've had no knowledge all of that in our family, our realm. It wasn't part of my life. Like I'd, in another previous life, I'd worked in childcare. I'd done a lot of first aid. Like I had basic knowledge of of diabetes, but it definitely wasn't anything that i had in the front of my mind. And she said, oh, well, she's got sugar in a wee. She said, let me just test her finger.
00:04:15
Speaker
And she tested a finger and she it just said hi. They couldn't get the reading for it. And, you know, they were obviously getting alarm bells and I was just sort of thinking, okay, like what does this mean? And the doctor came in then and said, oh, look, we're going to send her up to the hospital. Like, you know, there's a few just suspects, like it could be something with her for diabetes. We're not sure. We'll send her out and see what we can find at the hospital. And the panic sort of starts to set in a little bit. thinking, oh, gosh, this is a little bit like more serious than we realise. And so once they got a reading for her, I'm pretty sure, She was 36, had a blood sugar of 36 and a ketones of 5.6. Wow. is frightening.
00:04:54
Speaker
I felt like I was really drip fed the diagnosis, to be honest. And I wish I would just rather someone just say, like, this is what it is. Yeah. So she was there. obviously got some insulin into her thinking, right, this is what this is. And it started to improve things. And I think to them, they were like, this is showing. And he sort of pulled me aside and he said, we're sending you to Wagga because we're in young New South Wales and they don't really deal with much, anything major here. So they sent us to Wagga and the doctor sort of pulled me aside while we waiting for all that. And he goes, look, like, this is what I think it is. He said, they're probably going to try and... You know, he said they try to give you a little bit of information, a little bit here, a little bit here. said, I think you just, you know, should know. He said, this is what I think it is. And I was like, oh, okay. So I felt like that was a pretty good indicator. then we got in the ambulance and the guy starts saying things like, oh, sometimes like infection can raise their blood sugar. Like, you know, who knows? Like it could just be anything. And I was like, oh, okay, well, maybe it's not. Maybe I don't have to like totally, this is what this is. And then we get there to Wagga and, you know, you're in the emergency, they're running in, doing blood tests and all different tests and no one's really explaining like what they're taking and for what. It was just kind of this is what we're going to do. And we got these test results like is this sort of giving me a definite answer? And they said, oh, like she's definitely got type 1.
00:06:13
Speaker
You know, we're just running all these things as a bit of an extra confirmation. i was like, oh, okay. So it you know what I mean? Like I just sort of felt like there was no, you this is what it is, or hey, we're still working it out. was kind of like this. The first guy really sort of tried to warn me, I feel like, but then I kind of got sucked back into thinking it wasn't. But anyway, so yeah, she was in the hospital for a week there in Wagga, and the team was really good there. We still see the same diabetic educator, Mark, there in Wagga, and I chose that because I liked the continuity of care for that. So he'd been the one to support us in in the hospital, and he'd built the relationship with
Transition to Diabetes Management Technologies
00:06:46
Speaker
Charlotte, and he was really good with her, and Young doesn't have any paediatric specialists.
00:06:52
Speaker
diabetic educators so I thought I'd rather have her with a team that's seeing kids all the time that's got pediatricians so the clinic will go over three months to the clinic at Wagga so you see whatever whoever the encore pediatrician is for your scripts and things you see the diabetic educator at the same time he's accessible by phone and in the early days um you know you could call the hospital for the questions out of hours if you were like worried in the night you could call the pediatric on call and things like that and so that was good yeah so that was sort of the diagnosis we had we ended up she got out days before christmas um so like it was a stressful time were wondering whether she whether she was going to get out. And then there was so much organisation to do once we got out. was like, okay. So she came out with a Dexcom G6.
00:07:41
Speaker
A CGM straight away. Yeah. So we we did the CGM sort of the last couple of days of the hospital stay and set it up. Like that was the, he offered it, you know, and that was our choice just to yeah to do that.
00:07:52
Speaker
And so, but then it was like, we had to set her up on a phone. was like, right. This was days before Christmas, you know, and you know, were like, the Telstra shop and that is like at the best of times and I was obviously in still so much grief and shock I think for me like it takes months for me well it took months for me to come out of that shock and grief of the whole thing in the initial like you basically I i don't know I think you're operating in in a high level like your cogs are spinning it you know you're coming out and all of a sudden you're so much
00:08:23
Speaker
responsible for so much more you're having to think about so much more to keep her alive basically you know there's so much you're trying to learn and remember like sleeping in her room the first few nights that we came home I slept on the floor in her room because I was just like so like you know this is just an app we're running this on this is a phone that can fail and just like I don't know have I set this up properly is this thing just going to not I'm not going to wake up to it. I was just thinking, how can I just rely on her life with these this technology? Coming up to three years diagnosed. December will be three years. So for the first 12 months, we just did MDI, did injections, and the diabetic educator had advised us to start...
00:09:07
Speaker
with injections to learn and make sure that you know you get these pumps you've got to know how to how to do the basics if they fail and so I think that was really good and we didn't have private health insurance at the time so I signed her up in the initial when she was diagnosed and I just got her on her own plan because it was too expensive for us to get everybody on So we just got Charlotte on and that was sort of, you know, you've got your waiting period before you could claim a pump. So i just thought, right, I'll get her on. We'll wait wait that out. And in the meantime, we'll learn to do these injections. yeah which For 12 months, Charlotte did the injection and she was wonderful. Honestly, I'm so blessed with Charlotte. She is such a mature little girl.
00:09:46
Speaker
She's always has been. She's... um a real deep thinker and a very responsible girl. and she was doing her own injections after about two weeks of being diagnosed. And she was five.
00:09:57
Speaker
was six at the time. Yeah, so six and a half. and So she was we had that period and that was helpful too because we
Reflecting on Early Symptoms and Routine Adjustments
00:10:04
Speaker
were in the holidays. So we had that period of time before she had to go to school where we were able to settle in with it. She could get more comfortable and, you know, recover from the illness I guess it's important to say too um like the I mentioned the symptoms that I noticed for the reason for me to take her in for the testing I said but with reflection once we we're in hospital she had wet the bed twice and I had just thought that was strange it was not something that was normal for her at all and I just thought, oh, that's a bit weird. And so afterwards, that on reflection, I thought, oh, that was part of that. And she had lost a little bit of weight. Not enough that visually I would have seen it, but I knew how much she weighed just from, you know, whatever appointments. And then when they weighed her at the hospital, it was a few kilos less. And within, you know, days, the hospital was already like...
00:10:54
Speaker
powering straight back up. And I thought, oh, okay, yeah, she had actually lost weight as well and maybe a bit tired but not enough to be a symptom. So, yeah, I just thought I'd mention that as well for anything that may be helpful too. But, yeah, so after the 12 months on injections, we got showered on to the Omnipod Dash.
Choosing the Right Diabetes Management Tools
00:11:13
Speaker
Now, I made that choice for her and with her because – I knew the Omnipod 5 was coming. So I knew the dash wasn't as good as ah a tubed pump. It's obviously the dash isn't automatic. It's just the manual pump. um So it doesn't do its own corrections. and But what it did for Charlotte was to take away six injections a day and that dreaded long-acting insulin. That was really painful for her every night, giving that you would just...
00:11:44
Speaker
be so upset. She's like, oh, i finally like you know snuggle down, get ready for bed. And should then I've got to have this awful injection. She's so painful. So it was really great to get rid of those and give her that freedom with the dash. The dash really opened that up for her and she's a really active kid. She does a lot of swimming, gymnastics. So we started the dash, yeah, basically that year after and we probably had to do it for about a year.
00:12:07
Speaker
ah So we started the five in 2017. I think it was maybe February or March of this year. We started with Omnipod 5. So she's been on that for this year and it's really great. So it's the automatic adjustments, talks with her Dexcom. She's on the Dexcom G7 now. So she was the first kid in in the area in the team to get onto the two new technologies. So we were straight onto it because we we'd been waiting. Yeah, we did MDI for more than a million.
00:12:34
Speaker
over two years and then and over two and a half years He's only just been on the pump for, i don't even think six months yet, four months or something. So on the pod, the Omnipod 5. So yeah, it's, and then, but I can see as he gets older and he's got the ability more with the, like with the, with the tubes to go to a bit more of it advanced. You know, everyone manages this differently and everybody's child responds so differently and you become near your own expert in your child. You know, you're the one that's with them all the time. You're the one that's following the patterns and what affects what and how and how long. And the way I try to approach it with Charlotte, our kind of philosophy is um like this is lifelong for her. Well, until, you know, fingers crossed, the cure comes on in. Yeah.
00:13:20
Speaker
There we go. a bit bit ah She's low. don't know if you heard that. it's happening alone yeah she's at But I like to think about it in the way that like this has got to have longevity. The treatment with food for us and the her um feelings around food and her lifestyle.
Philosophy on Food and Lifestyle
00:13:38
Speaker
Yeah.
00:13:38
Speaker
that's got to have the longevity of her whole life. Like I don't want to try and be too strict on, you know, this is restrictive because this is better for your health or whatever. We try to just eat a really healthy, balanced diet the way that we would otherwise. And I'm lucky that she is a really great eater and she loves healthy food. Yeah.
00:13:57
Speaker
But I try not to be, oh, you can't have this or that or whatever because of diabetes because I think, well, she's going to get to be a teenager and she's going to be able to have access to getting these things herself anyway. And if I've restricted it, then she's going to get to that age where she's going to then rebel and, you know, you hear about it. Yeah, and she also doesn't know how it's going respond to her body. So if you kind of know now, like with things, you're like, you know, you split dose or, you know, that affects, you know, spikes later or, know,
00:14:24
Speaker
They talk a lot about eating disorders and things like that with diabetic kids as teenagers and, you know, the different ways they find that insulin affects their body. And so I just, it's a real priority for me for her to have a positive relationship with food. And i've I've shared that with the school in that I know for them sometimes maybe it's an anxiety that, oh, she's had the insulin for this food and she has to eat it.
00:14:47
Speaker
And I put that in her plan that no one is to force Charlotte to eat. her food like if something happens and she's not as hungry as she thought she was or the sandwich ends up was really soggy and horrible and she doesn't want to eat it i don't want anyone forcing her into eating that like i want her to be able to listen to her body and know that she's full and okay if that happens that's charlotte's responsibility to go and say hey i haven't eaten all of this i might need to have a bit of juice or i might need to just have a glucose tablet or something because i've not eaten all this food so that's good that's her response approach
00:15:18
Speaker
So you've got Charlotte on, she's at
Ellen's Unexpected Health Discovery
00:15:20
Speaker
school. but What grade is she in now? She's in year three now. So, yeah, she's nine. had her birthday in May. And then tell us, there's there's an element of the of after Charlotte was diagnosed and just learning all this tech and all about you getting your master's degree in in diabetes. Yes.
00:15:44
Speaker
Yeah, you knew about... Your universe threw you something else, didn't it? There's always a new first in diabetes, I like to tell people. It's like, you know, you get through your first your first overnights on your own and your first time that you're having takeaway out and your first...
00:16:01
Speaker
holiday and all these different things that come up and it's like, oh my God, okay, what do I do? like this is the first I've had to do this. or What do I pack? And how much extra do I have to take for this trip? And we hit another first that probably doesn't, maybe not specifically come up for people in this arrangement, but I think what we did for it could help a lot of other people, which I think is why I'm happy to share that. So in um April of last year, of 2024, I was on holidays with my family in up in Gosford.
00:16:31
Speaker
And we were staying in an Airbnb and i was on one of those egg chairs, you know, that they suspend from the ceiling yeah in a little cocoon and hadn't been put in properly.
00:16:42
Speaker
And the chain came out of the roof and hit me on the head and the chair came down with a really bad concussion. i felt really sick. I felt drunk. I couldn't think properly. My ears had all this pressure. I had all this pressure behind my eyes.
00:16:58
Speaker
I had a dent sort of in my head where it had hit me. And then i got really sensitive to the light. We were trying to to go about our day on this holiday. It was the last day of our holiday. And every time I'd walk out of the building, the light was just so painful in my eyes, the change from sort of dark to bright.
00:17:13
Speaker
And I just started to get a bit worried. Like I thought all this pressure that I'm feeling behind behind my eye and the dent on my head, like maybe I've fractured something on my skull. I thought maybe I just need to get this checked. Like I don't sort of want to die my sleep or something.
00:17:25
Speaker
I thought, look, I'll turn up to the emergency room in Gosford and they'll just tell me it's fine and I'll be on my merry way and we'll be heading home tomorrow. So I went in there, my husband just dropped me off and they assessed me and they said, yeah, look, you've got a concussion. We'll give you a ct and see if there's any fracture of your skull. Wait here in the waiting room.
00:17:45
Speaker
And it's kind of a bit different as a bigger hospital, I suppose, than where we are, but it was maybe, I don't know, 40 or 50 chairs there. Everyone's kind of just in this main holding area. And they were coming and getting two or three people at a time for scans, x-rays, all different things, collecting, orderlies kind of collecting people. And then they'd come and they'd speak back in the chairs and you'd wait.
00:18:06
Speaker
Anyway, so it came and they so took me and another couple of ladies. And there was an older lady and the lady was a bit a limp and the the orderly had one wheelchair. And she said, like, are you a okay? So like, I'm fine. i'm just a bit dopey. I said, give it to this lady. And she put her in the chair and wheeled us all up there. and Anyway, I had my CT.
00:18:22
Speaker
And when they pulled me out, the lady comes and she bumps this wheelchair right up to the bed and goes, now I want you to slowly sit up and sit in this chair. And I was like, oh, why? What did you find in there?
00:18:35
Speaker
And she said, well, the doctor will talk you about that, but I just want you to sit here and just get really good. And I was like, what? You can't just say that. Oh, my God, it's another, like, sort of just slidge trying to ease ease the way into giving you some sort of donor diagnosis. I know.
00:18:49
Speaker
And then the orderly that he walks down with us come back and she's pushing me in the wheelchair and she puts her hand on my shoulder and she says, I'm so sorry that I made you walk all the way down here. And I was like, what do you mean? Like, you can't just say that. Like, what do you mean?
00:19:03
Speaker
Anyway, they spat me back out in the waiting room and I was like, oh, well, it can't be too bad because I'm just out here in Genpop again. Like, um you know, they haven't put me into any special area.
00:19:14
Speaker
I sat out there for probably two hours before anybody came out and then the doctor comes back out and he goes, oh, like, I'm really sorry you've had to wait so long, like, come in. And he says to me, now, look, there's no fracture, he said, but we have found a large, what we think is a brain tumor. And I said, oh, okay. Yeah. He said, now, the reason that you've been waiting so long as we've been on the phone to Sydney, to Royal North Shore, we're trying to coordinate how, whether we need to get you there straight away or whether, you know, this can wait or what's the situation. He said, it looks like a calcified meningioma, which is a benign tumor that grows in the exterior area of your brain.
00:19:56
Speaker
And it was sort of right on the top, top right-hand side of my brain. He said, it's very large. And I said, oh, okay, right. He said, you know, I can't be sure that's what it is, but that's what we suspect. He said, but we're West waiting to hear from Sydney. So then i was like, okay. So he spits me back out. So I'm back out in, in the gen pop area again.
00:20:14
Speaker
And so at that point I rang my husband. I was like, I think you're going need to come. Like, it sounds like there's, you know, you a bit of a problem here. And he's like, oh, surely, like, it can't be too bad. They're not, you know, they're just putting you back out there and whatever. So anyway, he turns up and comes in just as they're sort of calling me back in.
00:20:29
Speaker
And they say, right, Sydney wants you to come tonight. We're going to send you by ambulance tonight and they're going to see if it needs to come out. going to have an MRI over there and see if it needs to come out straight away. Because I was sort of like, same thing, you're of just thinking, oh, it's not going to be the worst case. Like I'm like in my two hours out there in the waiting for them. I'm like Googling meningioma, tell me all about it yeah And a lot of the times it was saying they're very slow growing and often they'll just be monitored and if it's growing too quickly or too big, then they'll take it out. i thought, oh, look, they'll just, you know, they'll tell me to get an MRI in Canberra in a couple of weeks and whatever, they'll send me out. so I was sort of thinking it was going to be,
00:21:06
Speaker
Not real serious. But, yeah, they said, like, this is it. We're going to take you tonight.
Preparing for Brain Surgery and Family Adaptation
00:21:11
Speaker
And I just went, like, into panic, basically. I thought, well, mate, I'm on ah whole on holidays. Like, i don't even live here. All my stuff is screwed across our, like, Airbnb.
00:21:22
Speaker
i was like, I actually said – Could I, could you just let me out and I'll go back and like pack up? Cause like I had all my work stuff and everything everywhere. I said, Oh, you know, just let me pack it all up. So, cause my husband won't know what I've done with everything and, and then I'll come back. And they said like, no, like that's not happening. Yeah. You know, you have to say your husband's going to have to do it. And I just, it was like the beginning of releasing control because it was just like, you've got no control here with this. You can't go and take control of packing that up. You just have to let him do it. And like in the scheme of things, that just sounds so stupid. Like who cares who packed it up? But it was just sort of like such a strange loss of control. and because I guess you've got...
00:22:05
Speaker
I think that we as type one parents, we're we're so like yeah on and there is like when you, when you mentioned that word control, that's actually quite a good kind of word to describe how we kind of operate. Yeah.
00:22:19
Speaker
You know, like is this element of control, you know, for you need to have like the ultimate manager of their lives all of a sudden. You have to be across everything all the time. It's just something that's ticking over in your brain all the time and other people don't see it and they'd never understand it until they're living it.
00:22:32
Speaker
But it is just like this tab that is opening your mind all the time. Even when she's at school, she's fine. My mind is still on that phone and what's happening and I'll... Have they remembered to put her on sports mode or have has that she got a different teacher today? Do I need to think about who's got her and they're not going to know what needs to happen? And, you know, she's just always still my responsibility and my husband's, of course.
00:22:53
Speaker
And I had nights, like we'd got to a point where – Brad could go away, it's my husband, and I could have Charlotte on my own and he could go, I could go away and he could have Charlotte on his own. Like we were totally comfortable with that. yeah um We both, you know, made sure that one of us had always had service. Like if he's working out town or I'm working out a town, we'd let the other one know because we'd like to have two eyes on the phone in case someone's distracted or busy. Yeah.
00:23:16
Speaker
And also just for moral support sometimes to each other, isn't it? It's just really good. You know, if he's heading out of service, you go, look, just letting you know, like, you're on deck. It's just you watching it. Like, ah I'm not – I haven't got any eyes on it.
00:23:28
Speaker
um So that was kind of how we'd operated. She hadn't had any overnights with anybody else at this point. So this was – Oh, what, a year and a half she was, she'd been diagnosed at this point.
00:23:39
Speaker
So Brad went back with the kids. I was in Gosford Hospital on my own then, you know, and then I'm like, it was the middle the night and I like rang my parents and just said, I'm just letting you know, like, this is what's happened. You know, they're sending me to Sydney.
00:23:54
Speaker
And then couldn't get a bed. They couldn't get a bed for me in Sydney. So I ended up staying in Gosford in the emergency room. And then they sent me to Sydney in the morning. So i went to Sydney that morning in the ambulance and then waited for three days for the MRI. and So after the MRI, the neurosurgeon came in and said, yeah, look, it's a large tumour. Like I think it was four centimetres by three centimetres, like right on the top of my head.
00:24:24
Speaker
And they said, it's already pushing your brain out of the way. It's not imminent where we're going to take it out today. you said, but it needs to come out very soon. If you need a few weeks to get your life together, that's okay. You can go home and do that, but you're going to need to come back in a few weeks and you're not going to to drive for six months.
00:24:41
Speaker
So it was like, right, okay, I've got to try and sort out my work and my life and my daughter and how I'm going to do life living 10 minutes out of town in a rural area and getting my kids to school and all that.
Surgery, Recovery, and Managing Family Life
00:24:57
Speaker
Don't ignore the four. The four early warning signs of type 1 diabetes. Excessive thirst, frequent urination, unexplained weight loss and extreme fatigue.
00:25:07
Speaker
If you or someone you know is experiencing these symptoms, don't wait. Get checked by a healthcare professional. Early detection and treatment are key to managing type 1 diabetes effectively.
00:25:23
Speaker
So you had, isn't that a very funny, strange of events though? Yeah, meant to be. Completely meant to be. Like it's almost like the universe is like we have to, I keep saying the universe, like I'm such a hippie. I believe it. No, I believe it.
00:25:37
Speaker
There's definitely a sign there that like, because otherwise what, symptom did you have any other symptoms? think it's bad. some hazing in my left eye and I'd had it assessed and they said, oh, look, sometimes that can be brain things. Let's just like make sure you haven't got MS or something like that. And they looked into what they could see and they couldn't find a reason. And they were like, you know, we think it's okay. And that went after the tumour came out. So that was my first sign. So you're back for Charlotte. In the initial, it was like, right, well, how are we going to do this? Because Brad was going to come with me to have my surgery.
00:26:07
Speaker
So I ah thought we've got to work out. It's going to be at least a week. So we're going to have to have people have her over a night for a week without us. I'm going to be incapacitated for at least a few days of it.
00:26:19
Speaker
um And at that point, Brad didn't really wake up very well in the night for Charlotte. So it was mostly me. He didn't really hear a lot of the alarms. So all of a sudden I'm possibly not going to be able to be watching that.
00:26:31
Speaker
um And then we're going to have to train people to do her CGMs and her pumps. Like, right, how do we do this in a very short period of time? And what I ended up doing was I made videos for a pump change. I had Charlotte and my husband help me and we recorded like, okay, this is what this product we're going to use. You can see it on the screen. Okay, now we're going to do this and then this is what comes up on the screen. This is the next thing you need. So I figured that way, like it's not a difficult task, but there's just a lot of little steps. There's so many little steps and we always still, my husband and i still forget to do. Yeah, yeah. You know, totally. When you're doing it all the time, it's still easy to just get distracted and go, oh, God, I've got to push the button. I forgot to get the new sensor. I'm going to get on.
00:27:15
Speaker
So i figured at least then they could pause it and go, okay, I did this, right. Now let me go back. Oh, yeah, that's the thing she had and that's what it looks like. Okay, yes, now do this. So I did that for the CGM and I did that for the pump. And then the other thing we did was we had my mum and we had my husband's mum and dad come and pretend like we weren't there. So Carmen was like, right, at lunchtime. What are you going to give Charlotte? What's the carbs? You guys need to work out what the carbs are, what it's insulin you're going to do, and let them do a bit of a trial run while we were there to like support them. And I wrote out a bunch of like commonly eaten foods and stuff and the carb levels and lists and stuff like that.
00:27:52
Speaker
um I've prepared them as much as I could. So now more people know how to care for Charlotte. More people feel more capable and Brad and I can stay a night or go somewhere together. For our marriage, that's, you know, another bonus where it's not just one or the other.
00:28:08
Speaker
So, yeah, I've... shared that for a lot of different people that I've come across and said, look, this helped us, you know, the videos that were they were able to look. and Yeah. so And I think like, even, even though you've had that diagnosis, it's such an important anyway, you know what i mean? Like, even if you didn't have that, because I think we, yeah you know, like I still struggle with having Harvey go say, you know, to my parents or like, ah or his parents or,
00:28:35
Speaker
um, Scott's parents that, yeah, i feel like there's, yeah, I've still got to monitor it and control it. And then I do, ah you know, sometimes I think, ah yeah, what if the pump came off? How would they know how to redo that? And so, yeah, like we've mainly, I've taught Harvey how to do it. Like he would probably know how to do it, but I'd have to talk to them probably. Yeah. But then it's also, i think we, we tend to not like to ask for help either.
00:29:02
Speaker
And, where you you know, like, whereas I think when when you have something like just even like a type one, that people are like, how can I help? Because there's some really shit days and nights and stuff like that. And people are always like, what can I do to help? And it's like, oh, nothing, it's fine, it's fine, you know, blah, blah, blah. But whereas you're like people, I think people want to help. You know, I always say to people, like, say, actually, would you mind picking up some milk or something? Can someone, when they go to the supermarket, grab me something and drop me off? for You know what I mean? Like just those little things. I needed a lot of help. I needed a lot help for a lot of time.
00:29:38
Speaker
It went for long time. How long did you need to do this? So... It was maybe three or four months until I was capable again.
00:29:50
Speaker
go So in the beginning, yeah, couldn't really do anything. And so i'm the same. I know what you mean about, you know, people offering and you just sort of think, oh well, I don't want to actually say, oh well, actually, yeah, go and do this for me.
00:30:03
Speaker
So for me the most helpful was people that just just turned and just did things, to people that just brought food because obviously husband was working and I couldn't really do anything. So for someone just to have, bring food, deliver food was just so helpful. Easy, quick meals that I could just microwave for myself in the daytime and nice meals for the evening that I didn't have to think about. And it was really helpful and and ongoing too. It wasn't just in the initial. I'd have ah even... um people My husband's a plumber and people that he works for that I haven't even met in person were sending food with him. Like he would go there and do a job and she would have all these meals and food and cake and and things sent for me months down the track and just say, like, yeah, that's what was so helpful. And I think separate to the brain situation,
00:30:55
Speaker
I've got a friend, her name's Ellie, and the way that she was so willing to support me and Charlotte in the beginning was um was really made an impact on me.
00:31:10
Speaker
So she was like, she's a nurse but doesn't have experience in type one in her own day-to-day life. But she was like, I'll have her. She said, you if you ever want a break, you bring her here. You just tell me what I've got to do. She said, I'll put the app on my phone. You know, I can do it. You just tell me. what I need to do, teach me what I need to know. i can look after her whenever you want. And I felt that was a really big deal and is so helpful in the beginning, especially when you struggle to trust people to look after them. They're contactable by phone and you can see the numbers and stuff like that. It's just, it's hard. It's hard. It's all your first. It's your first leaving them with other people and getting confident. It gets to a point now it's just like, you know I'll turf her out the door at mum's and she runs on in and it's just like, you know, it's old news now, but, you know, I've still got firsts to come. They'll be new firsts for me along the way all the time. But for anybody else going through these firsts, I thought these things that i happened that happened for us in quite a quick succession, what we did maybe can help someone else. And that was my motivation in speaking here as to whether...
00:32:09
Speaker
Things that we did can maybe give someone else an idea as to, you know, if they want to leave their kids and have some sort of space or they have to for work or whatever or trips or things that come up. But, yes, so that's kind of a little wrap.
00:32:25
Speaker
And how, so you had that, you had that operation, you had to wait like that. You didn't have any other treatments that had to happen or how is your health now? Oh gosh, there was still things.
00:32:37
Speaker
I just want to forget how about it all. But so I lost the feeling in my hand as part of the surgery. So my left hand, I'm left-handed and I lost the feeling in my left hand. So when I woke up, my hand and my wrist up to my elbow was buzzing like it was electric. It was just a really horrible feeling and totally numb.
00:32:58
Speaker
I could still move it. I could still hold things. I could feel temperature. But because of where the tumor was on my brain, there was obviously inflammation and a bit of damage. And I lost that feeling.
00:33:09
Speaker
And over the past 12 months, it has improved. It's not, it doesn't buzz anymore. But in those first few days, it got worse and worse. Like it went from just at my elbow to my shoulder. And so my whole arm was buzzing. And then it was my whole shoulder blade and my neck up to my jaw.
00:33:25
Speaker
They gave me scans to see if I was having seizures, but I wasn't, thank goodness. And they said, look, give it a few days. Hopefully I'll settle down. And it started to retreat back down to, to my elbow when I left hospital and they said, look, okay, give it a few weeks and we'll see.
00:33:40
Speaker
And it wasn't a few weeks. It just sort of went on on and on to the point where it is now. It has improved. It doesn't buzz anymore. i can feel my pointer finger and my thumb again, but I can't feel my other three fingers and my palm.
00:33:52
Speaker
And my eyes were affected. So they don't know whether from the concussion or from the brain surgery, but my eyes have turned. So I had glasses before, so i had measurements of of the direction of my eyes previously. So after i was having a bit of issues visually, i was getting quite visually fatigued. I was going to Woolworths. It would just feel frightening. like It was just too much. It was really overwhelming to me.
00:34:16
Speaker
and I'd get like feel sick and I'd have to just go out and um I was seeing things out of the corner of my eye like flashing like things that weren't there and getting a lot of headaches and stuff in the end the optometrist said that I had to get a prism lens in these glasses she said because all of a sudden your brain doesn't know where it is like your eyes heard that yeah in a different way.
00:34:40
Speaker
um So these lenses reflect the light differently for me. So I'm able to see as I would have. um So when she put them on, I couldn't have told you that i couldn't really, like ah I couldn't have described what was wrong. I couldn't, it wasn't that I couldn't see. It just felt like not super clear. I just thought maybe I need an adjustment with my glasses or whatever. And I put them on and I just got this breath of relief. It was like, oh my God, like,
00:35:04
Speaker
I just didn't realize how intense I was and that was so horrible. And so I wear these seven now. So that's sort of the ongoing effect of that. And then I had brain fluid leak into my face.
00:35:14
Speaker
It was probably about eight minutes after the surgery. So I had to go back and have more um MRIs and I thought maybe I had like meningitis or something. My whole left side of my face was all swollen up. Like I'd been bitten by a bee or something, you know huge, but it was brain fluid. Yeah. Seeping from the wound into my face and,
00:35:32
Speaker
So, yeah, they basically said, oh, look, no, this is what it is. There's nothing imminent. you know You're not going to die You're okay. Okay, off you go. And I was like, yeah, okay, great. But, like, how I going to look like this? What do you mean? Like, sort of like maybe if like this had happened in the initial, I would have sort of thought it was pretty normal. But, like, i'm I'm starting to get my feet here at eight weeks and um now, like, this.
Building a Local Type 1 Diabetes Community
00:35:54
Speaker
Like, anyway, it took a couple of weeks and it came back out and things settled down. I think it was maybe four months ago. And I managed to get back on my horse. I'm a horse rider. So.
00:36:04
Speaker
so just I thought that was just like you just using a phrase there, but you actually got back on your horse. Yeah. So I had like an event that was coming up and I was like, oh, I'd really love to go to this. And it was just sort of a goal and,
00:36:17
Speaker
I had so many excuses of why I couldn't do it. You know, I didn't want to leave Charlotte. I didn't feel well enough and not fit enough. horse isn't fit enough. But I made the decision to create the life that I wanted instead of living in the excuses. So I just i just made it happen. And I got on this horse and I had a friend come and help me. And it was... a really great achievement and it felt really great. And I think it helps me in my perspective in the situation with Charlotte. It's really easy to slip into um frustration with being woken up and, you know, you have nights and you're having to get up and do a fair bit for the kids and the kids are suffering and things that, whatever, things that happen with diabetes. It's easy to be resentful of it. But I think the brain tumour definitely helps.
00:37:05
Speaker
can help me pull back into a bit of reality and just be grateful that, you know. Wow, Alan, that is a story and a half, my goodness. But, and I know that you you also do, you've created a little sort of local Facebook kind of group. Oh, yeah. well, it's not just, your family, it's helping others, yeah? It's only in its beginnings. So, yes, we've got Type 1 Kids Community that I started for our area here. in around young young and sort of there's up to sort of an hour, hour and a half people away that are joining in. We've got about 14 or 15 people in the group at the moment and it was birthed because we did one of the Diabuddies events in Canberra, so that's around two hours from us. And I'm trying to take Charlotte to as many as I can for those sorts of things just to try and get her around other people with the same condition. It was one other little girl at her school, luckily, you know, not that you'd wish it for her, but, you know, at least they've got each other. um
00:38:01
Speaker
And so anyway, we went to these Diabuddies in Canberra and Charlotte had a great time. It was one where the diabetic educators all had diabetes and they took them all off and the kids were all together they were all dosing their lunch together and everyone was doing the same thing and the parents were off having their own discussion. Yeah. And then at the end the day, she got really sad and of trying to get it out of her and couldn't get an answer. And it wasn't until bedtime, which is often how it occurs, where she said, oh, look, I had a really great time today and I was just the same as everybody else. But she said, it just reminds me that, like, these aren't on very often. And she said, and now go back to school. I'm the only one, you know, I'm the one that's the odd one out that has to do any of this and there's no one else in my classroom, you know, my friends that are doing it.
00:38:42
Speaker
And that's just sad. And I said, okay, totally valid. What can we do about that? And I said, okay, well, these things are only on ever so often. i said, let's try and find more kids that are here local. So it's easy. It doesn't have to be a big shebang. It can just be, hey, we're going to the park. Hey, we're going to go and ride our bikes go to the cafe. Do you want to come?
00:39:03
Speaker
So, yeah, we just made the Facebook group and put the word out on just a bunch of community pages and said, hey, anyone that wants to join in, any kids, come on in and we'd love to have you and share your photo and get to know everybody and try and create a little bit more community for these kids that sometimes feel a little bit isolated. Yeah.
00:39:22
Speaker
We recently went, they had a, Diabetes Australia had a day in Wagga, so we went to Vortex over there with a bunch of kids and that was really great.
Turning Challenges into Opportunities
00:39:29
Speaker
And we will be heading to the Sydney Christmas party with the type 1 family.
00:39:33
Speaker
We decided to make the plunge and have a little couple of days in Sydney for that. But, yeah, the little group just makes it a little bit easier. Yeah, yeah it absolutely does. And also for you not just for her, you know, for you to be able to connect with other type 1 parents and just...
00:39:50
Speaker
Like I often say is you just speak the same language all of a sudden. It's like, yeah you know. Yeah, someone else that understands. Yeah, it's always good. You're always learning. Like, you know, there's always something you can pick up from someone else, um what they're doing. And we're having a one of the type one mum's dinner I'm going to host here in in about a week.
00:40:10
Speaker
um and so that yeah Is that through the Type 1 Foundation you've advertised it through there? Oh, so good. We're going to have that here. So we're just sort of trying to get some visibility for people because it can be isolating, especially in the beginning. and You might not have a lot of knowledge about what funding there is or different things that you just sort of pick up along the way and people that are a bit further down the track with you can just make life so much easier if they can say, hey, I learnt this.
00:40:36
Speaker
Wow, Alan, you've really taken us on a journey. Yeah. Well, I'm chore card, can you tell? But I particularly liked what you said around, you know, you can kind of feel like you've been really dealt like a really shitty kind of set of cards in this aspect of things and then how you've managed to turn that around of like, you know what? Yes, you might be having this going on, but, and then you've had to dive straight into teaching people how to support Charlotte way earlier than what you had anticipated. But then on the flip side now, how much easier it is it is it for you and your husband to be able to do things together
Conclusion and Call to Action
00:41:14
Speaker
and, you know, have these people that can just walk straight into your life or straight into, you know, Charlotte can walk straight into there and you know that they're they're completely covered and you've got that kind of peace of mind with aspect. Yeah. I particularly like the saying that you focus on is that create the life that you want instead of creating excuses. yeah We are so set sometimes that saying, well, I'm the only one that can care for my child.
00:41:39
Speaker
You know, I do it better. I, you know, this, that, the other. but But then that what's that limiting for us as carers as well? for attitudes And for the kids. I've had so many people say to me, Oh, your daughter's got diabetes. Oh, gosh, you know. Oh, God, I'd never let her go on school camps or I'd never let her do this. Oh, God, I couldn't handle it. And everyone's got their own journey and their own thing. Like, I'm not judging those people for for their feelings. well like these These weren't people with type 1 kids, but they would say these things to me. Like, oh, God, I couldn't cope.
00:42:08
Speaker
um But for me, I don't want to put those limitations on Charlotte. Like um I'm trying to share with her that there's nothing that this is stopping you from doing. All it takes is a little bit more planning for you. yeah We just have to put a bit more effort in. I said, but do the same as everyone else. You can go on excursions. You can go overnight. it's like Whether that means one of mum and dad just have to come and be a parent helper or whatever that we've got a support worker in the school is fantastic in that that regard. They have been really lucky and I know some people aren't.
00:42:35
Speaker
lucky with the way the school handles the kids, but we have them, they will always send a support worker on any excursion that's experienced with Charlotte. They will always have monitors at recess and lunch that are adjust. Their only job is to be monitoring the girls' diabetic numbers.
00:42:50
Speaker
um they're really really great she has a support teacher in the classroom in the morning to support the teacher if she needs help every teacher in the place is trained on diabetic care they supported her in the initial with the injections that there's people in the office that can help at all times they're a really great school um so that's what gives her the gateway to confidence to do the same as everybody else because they're so supportive as well yeah That's amazing. That's amazing. All right. So to wrap up this fortnight's episode, I always like to finish with asking the guests around what is Charlotte's hypo treatment?
00:43:27
Speaker
so Oh, gosh, it's um it evolves because she gets sick of things. yeah In the beginning, we did the honey sachets. We had the little they're like a little sugar sachet, and I liked that because it was healthy, like it was natural. It wasn't artificial. But she doesn't like She can't look at another honey again. So um we're at glucose tablets. The Glucose Chews are other the big ones these days. Yeah.
00:43:55
Speaker
The little 10-gram juice poppers or we use Skittles little bit, like one Skittle. But I try not to use lollies as much as I can. like ah They do make their way in just to kind of mix things up a little bit. But, yeah, the gluco chews are probably at the top of the rank at the moment. But wait until she tells me she won't take anything off. Yeah, that's right. Yeah, you have to keep a lot of options there sometimes, don't you? Yeah.
00:44:25
Speaker
Alan, thank you so much for your time and for sharing your story with us. I hope that everybody has got a lot of value out of this episode. Alan shared some great insights into to support your type one child, but also to support your family members to support your type one child. um I particularly loved some of those insights you've said around like creating videos and things like that, because we can easily just say well they just can't it's just too hard but now with the technology that we can just simply send a video and say oh this is how you do it if a pump pulls off or a failure or something like that then I think that's awesome of how you've done that yes it does take a bit of work but you know then it's there for you if if stuff does go astray like what you were saying you know like with you perfect example there For sure, Charlotte is a big contributor to my confidence. Like, don't just think that I'm able to just have faith in all these things. Like, she's so capable. Charlotte is so capable and wants to be independent. She does wants to do her own pump change. She bites me. I'm doing it myself. You're not helping me.
00:45:31
Speaker
You know, I dropped her off at my sister's not long ago and Holly was like, oh, next thing, Charlotte just comes out with her afternoon tea. And I said, oh, do you need to polish? She goes, I've done it. I'm on it. Like, you know, she said, I just couldn't believe she just knew. She knew what the cars were. She what she had to do. and And, I'll definitely sing her praises from the roof that she helps me help her as I do.
00:45:51
Speaker
Yeah, she's amazing, our little kids. Yeah, for sure. Amazing. All right, so that's it for this fortnight's episode. We hope that you've enjoyed it and we look forward to bringing you another episode very soon.
00:46:09
Speaker
Thank you for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard be sure to subscribe to our podcast on all the platforms so you never miss an episode.
00:46:23
Speaker
We also appreciate it if you could leave us a rating and review. It really helps us to reach more listeners just like yourselves. For more updates, behind the scene content and to join the conversation further, follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website, type1foundation.com.au.
00:46:44
Speaker
Thanks again for listening and we will see you next time on the Type 1 Club.