Welcome And Nicole’s Story

James Dunn 0:00

We acknowledge and pay our respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability. Welcome to another episode where we will explore a variety of non-visible disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements that benefit everyone. Hi everyone, my name is James Dunn and I'm your host. And like many of the guests on the Sunflower Conversations, I also live with disability, including myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome. On today's show, I'm joined by Nicole Trimboli. Nicole lives in Melbourne on the lands of the Cooler Nation. Nicole was diagnosed with Hodgkin's lymphoma in 2006, from which she recovered, and was then diagnosed with bowel cancer in 2021. In order to remove the cancer, she made the decision to have her large bowel removed and live with a stoma and ostomy bag. Since her bowel cancer diagnosis, Nicole has dedicated her life to raising awareness of bowel cancer and helping those who have had the diagnosis. Nicole now runs her own wellness company, is a lived experienced committee member for the Bowel Cancer Outcomes Registry, an ambassador for choloplast, and as a keynote speaker and meditation teacher. She has also released a book about her experiences living with bowel cancer. Today we are going to speak with Nicole about her experiences of being diagnosed with cancer, living with a stoma, an ostomy bag, and the work she's doing to help people understand the realities of life after bowel cancer. Nicole Tremboli, welcome to the show.

Nicole Trimboli 1:53

Thank you, James. It's a pleasure to be here.

James Dunn 1:55

So you've experienced two different cancers at two very different stages of life. How did each cancer impact your life, including your sense of identity? And how did surviving Hodgkin lymphoma shape how you approached your later diagnosis of bowel cancer? Or did it just feel like starting over again?

Nicole Trimboli 2:14

Oh well, I don't think you're ever ready for either of those diagnoses. So first time round, I was a young mother of two children, a two-year-old and a six-month-old baby. And it hit me like a ton of bricks. Uh obviously, you know, you're facing your own mortality and having to go through treatment while trying to look after two small children was no easy feat. And the second diagnosis was uh 15 years later. So here I was thinking everything was fine, and bang. I tried to the analogy I use is the first time around the universe tapped me on the shoulder and the second time round it punched me in the face.

James Dunn 2:56

I like that.

Nicole Trimboli 2:57

Yeah, so I did sit up and take notice the second time.

James Dunn 3:01

Did you think the second time, you know, you can't believe you're here again?

Nicole Trimboli 3:05

Yeah, I I realise now um having when I went through that, and I realized I think when I went through that second diagnosis that I carried with me a lot of um mental um scarring and and I believe undiagnosed PTSD from my first uh round of treatment. The treatment was absolutely grueling, and I was thrown into it so quickly, and I think having to deal with so many other um elements in my life at the time, you know, looking after children, mortgage, husband, um, just you know, your whole world changes, the income into the household, you know, the just the pressure, the stress that I felt, um, and then having to deal with feeling so sick. It was a young person's cancer that I had, the Hodgkin's lymphoma. Therefore, the treatment was very intense because they could hit me quite hard with it uh for the maximum outcome. I had trauma going into the hospital even to have the treatment. I'd actually start vomiting before I even hit the floor on the hospital where I was having the treatment first time round. And all of that, once it was all over with, was undealt with, but it all resurfaced upon the second diagnosis. So the thought of having to have chemo again and having to go through that again, there was quite a lot of mental anguish that I had to deal with.

James Dunn 4:27

Yeah, that sounds incredibly traumatic. And it sounds like even though you had the experience of cancer the first time, it it it didn't really help the second time. In fact, it it made you even like a stressed about it because you knew how hard it would be.

Nicole Trimboli 4:41

Yes, yes. And I will say that in 15 years, um, chemotherapy has improved. Um, it's still a horrible process, but it has improved a lot in those 15 years. So uh it was um not quite as bad. And I was very fortunate to have been on a trial treatment to actually receive the chemotherapy second time round, where they put you in hospital for two days at a time. So I had uh there was an in insurance against, you know, no dehydration, no uh nausea, and all the medication was given to you um there and then instead of just filling you with the chemo and sending you home how I was treated the first time around.

James Dunn 5:24

So the first time around, what impact did that have on the family? And y you mentioned you had two young children. How did that impact how you were

Family Support Behind The Scenes

James Dunn 5:33

able to to help them and and your life at that stage?

Nicole Trimboli 5:36

Well, this is a topic that I'm very passionate about now is the people around the people because uh you cannot get through it without having people around you. And uh my mum and dad would arrive in the morning and look after the children. Um, my husband would have to go off to work, and um I think at the time he was dealing with a lot more than just me being unwell. At the time his his father was actually having treatment for bowel cancer and his brother had stomach cancer, so he had three of us at once, and I think his way of dealing with it was to actually go to work and forget that it was happening. So he he sort of would take himself away from it, and then my parents would step in um and help look after the children, and my dad would was like my chemo partner, so he would drive me to chemo as much as he hated it every two weeks. Uh yeah, so and you know, mum would cook meals and look after the children, and fortunately they were at an age at that point in time where that was ca you know it was possible for them.

James Dunn 6:45

Yeah, those support networks are just incredibly important, aren't they? Yeah. As you said, no matter what the ki condition is, the disability, the health condition that you're living with, the illness, it's the team around you that helps you to get through it. It sounds like you had a really good support network around you. The second time round, you you said that it was a a punch to the face and I'm sure it would have been very traumatic. Can you take us back to the moment when removing your bow and getting a stoma and the ostomy bag became part of the conversation? And how

The Colonoscopy That Changed Everything

James Dunn 7:15

was that procedure and the decision explained to you by doctors and what concerns and fears did you have about the procedure?

Nicole Trimboli 7:21

So I guess diagnosis point, I went in for what they thought was just going to be a an investigative uh colonoscopy because I had a a slight amount of pain, frighteningly. There was not a lot of symptoms uh in my stomach, and I went in for a colonoscopy. I was actually leaving to go on holiday the next day, and this was a Friday, and I thought that I would just go in and you know, they might find some polyps or something like that causing problem, and and then I'd be on my way. Well, it wasn't the case. I woke up in recovery after the colonoscopy with the surgeon sitting on my bed and he said, Nicole, you're not going anywhere, you've got bowel cancer. Wow. And then it began. So I didn't leave the hospital. And I guess the thing to remember is that when these things happen, you're talking about the people around the people, there was a lot going on that day. I had a child on school camp that needed to be picked up that afternoon. I had, you know, another child at school. Uh, there was there was things going on around me. So automatically, as a mother, you you I got that shocking news, but at the same time, I was like, well, how am I going to manage this? I don't want the kids to find this out over the phone, or you know, so you try and manage the life, and so you put yourself last and and try and manage what's going on around you. So basically, then I was admitted to the ward, and it was and it was explained immediately that I was three days off being completely blocked, and I would have been an emergency case coming in, which meant that I wouldn't have been able to go to the toilet at all because the cancer mass was blocking my bowel. And they were actually unable to get past it in the colonoscopy to view further up to see if there was anything further up. So they didn't really know at that point that I was diagnosed what else they were dealing with further up. And immediately I was taken um into surgery and had the stoma put in. So there was really no choice, no decision, no uh I didn't even really know what one was. There was barely time for them to explain to me what was going to happen and whether it was gonna be permanent or temporary. It was it just had to happen because otherwise I was gonna be in all sorts of strife. So that was one of many surgeries that that then began. And uh once they knew what they were dealing with, they found another mass further up and they also discovered that I had uh what they call a polypop poly polypopus syndrome. I can't say it wrongly. Yeah, um which usually is hereditary, but in my case wasn't and uh due to that my surgeon basically laid it on me and said, Look, we can cut out the masses and rejoin you, therefore we can take the stomach out and you can go back to going to the toilet normally, or we can take the whole bow and you can live with a stoma bag permanently. But there really was no choice because as he said, if he he cut the pieces out and rejoined me and I went back to life, he said I'll see you probably in another four to five years. He said, and it may not be such a good prognosis. He said, You're very lucky, everything was contained within the bow at that point. He said nothing had spread beyond the bow. And if it had a spread beyond the bowel, then it would have been a very different story. He also said that by the time he sees me again in four to five years, um, most times when he sees people with bowel cancer, it is already in the liver and the lungs as well because it's progressed, it's very silent, it's it's not something that you get a lot of symptoms for. Okay. And he said to me, Yeah, so the risk is very high. He said, if you yeah, if you take that option. He he was willing to give me that option. But um I think it's a bit like a lot of breast cancer. Um, people, you just say, remove it, get rid of it, it's it's gone. And he was pretty confident the outcome would be very positive if he did that. And as it was. So I had my large bowel removed. I still have my small bowel, and that's what's connected to the um, which the small bowel is the stoma that's pulled through my stomach, and the bag sits over over the stoma.

James Dunn 11:53

Wow. That sounds like it would have been incredibly stressful to have that all happen at once. And as you said, you you hadn't even organized for family logistics. You you were going in for a what you thought was a fairly routine um procedure and then to stay in hospital and have that uh must have been, as you said, a real smack in the face.

Nicole Trimboli 12:10

Yeah, prior to having the operation to remove the whole bell, I had to go through um the three months of chemo. So it it but the whole process had to be decided upon before they could work out how to actually execute it all. So yeah, so it's fair to say I was in hospital for around three and a half months.

James Dunn 12:28

And as you said, it sounds like it really wasn't a choice. Technically, yes, but not practically. It was something that you know you just had to do to to stay alive.

Nicole Trimboli 12:38

Yes, yes.

James Dunn 12:39

So life with a stoma and ostomy bag, what does it look like? What's a typical day look like, and what are the main challenges?

Nicole Trimboli 12:46

It's a huge adjustment.

Living With A Permanent Stoma

Nicole Trimboli 12:48

Physical, mental is just massive. And even coping with the stigma with people around you as well. The mental aspect is huge because you can have accidents, things can leak, you can end up in situations out when you're out and about that even finding a toilet can't fix because once it's all leaking and it's everywhere, it's all over your clothes, it's you know, so so you initially feel like you can't leave the house, you can't you can't have a normal existence, and your body changes a lot after surgery uh for quite some time. So there's you think you've just got it organised and then it it changes again. And food plays a huge part as well in in managing it. So I have to watch my diet. If I know, for example, I'm going out at night time, the more food you put in during the day, obviously the more food you're gonna have come out at the end of the day. So if I know I'm gonna wear a nice dress and I'm gonna go out somewhere at dinner time, then I I still eat, but I eat small amounts during the day so that I ensure that I'm able to manage things while I'm out. So it's a lot of forward planning going into it. Always carry my little repair kit with me when I leave the house. And mentally I have a little mantra that I I go through before I leave the house each time that I've got this, I'm confident, I'm gonna be okay. So, you know, a lot of it's mindset, but physically I've had to make some huge adjustments too. You know, I I used to get really upset when I'd look at myself in the mirror in my underwear because I knew that my stomach was never going to be the same again. I've really done some things to to help me deal with that and to to be body positive for other people as well. It's not just about me and it's what I've had to had to really learn.

James Dunn 14:41

That repair kit that you mentioned, is that something that always works? Do you feel confident in that? Or have you had to go and have further procedures done?

Nicole Trimboli 14:50

And sometimes I like to play Russian roulette and I leave the house and do the shopping or something, and I haven't got it with me. But I know that I'm not far from home and I can, you know, if something happens, I'll just drop and run home. But it is like a smaller version of all of the supplies that I need. And I I do also have a change of clothes usually sitting in the back of the car, um, just just in case something has happens while we're we're out. If we go to a special occasion, for example, a couple of weeks ago, I went to a wedding and I bought myself a nice dress, you know, to go to a wedding. I'm probably the only woman at the wedding that had a backup dress in the car. Because if something happens, I have to have something else to put on to continue the night. So yeah, so there's a lot of forward planning, a lot of forethought, but it's more turning your thinking around to what you can do and what you can achieve, and just having that physical confidence too to go out there and not worry, you know, that someone might see the bag, or you know, in in the beginning you you're trying to cover it up all the time. And then I thought, well, this is silly, it's part of who I am. So once I accepted mentally that it was part of who I am, then I had a different view.

James Dunn 16:02

Yeah, it sounds like the mental side of things is really significant and it is a lot of effort to put yourself in the most positive frame of mind to essentially take on life and exit the house each day, as you say, knowing that it'll be okay, but it's obviously challenging. Are there any sort of small victories you have in a day that other people just wouldn't even think about?

Nicole Trimboli 16:23

Yes, because I wake up every morning and if it hasn't exploded in the bed, I think it's a good day, right? Start of the day. I often wake up with a big balloon on my stomach, but you know, it it's it's a good day if nothing's if nothing's happened overnight. And now that I'm managing it better, uh it those things it it still happens, but it it's a lot less less regular that it happens now, like I said, because you know, there's a combination of things that have helped me to regulate it, and that's food intake and things like that. But uh yeah, uh if you wake up and you, you know, the bed's clean and you haven't had to get up and change the whole bed halfway through the night, which has happened many, many times.

James Dunn 17:09

Yeah, that's obviously just something that other people just wouldn't think about.

Nicole Trimboli 17:12

But not nice for your partner either.

James Dunn 17:15

No. It seems like perhaps both of you that would be seen as a really good start to the day.

Nicole Trimboli 17:20

Yes.

James Dunn 17:21

Which does put you in a positive frame of mind. If you've already if before you've even got out of bed, you're already ticking something off as a win. That's a very positive attitude and and helps you with your outlook on the day. Has your relationship with fear or uncertainty changed as a result of having cancer?

Nicole Trimboli 17:37

Yeah, and and it

Daily Routines Leaks And Mindset

Nicole Trimboli 17:39

is something that as a as a cancer patient, I think, and everyone that's ever been through it knows that it's never over. You live your life in six months to twelve month blocks in between tests and and scans, because for me that's just life now. And it's ongoing. It's it's about how you manage it mentally. And it's something that not a lot of people talk about because the perception of the people around you is that you're fixed, you've been into the mechanic shop and you've been sorted out and you're fixed and you're back thrown back out into the world, but it's always with you, and there is always a level of fear and anxiety. I still go through it each time I have all my blood tests done and my scans done. In fact, that was only four weeks ago for me. And I'm happy to say that um I'm five years cancer free.

James Dunn 18:30

Wow, that's a very significant milestone. And it is something that people with cancer talk about a lot that anxiety of those follow-up tests. And it just doesn't seem to get any easier.

Nicole Trimboli 18:41

No. And everyone says to you, Oh, you'll be right, you'll be right, you're you'll be okay, you know. And and I think sometimes you know in yourself you feel well, and that you know, in the back of your mind, you think, yeah, I I should be okay because I I feel good and I'm, you know, not got any of those symptoms and whatever, but it's still it's there. The anxiety is always there.

James Dunn 19:20

So one of our podcast community questions that's come in is uh what has been the biggest impact on your life once your disability

Scanxiety And Never Feeling “Done”

James Dunn 19:29

was better understood by others?

Nicole Trimboli 19:31

Well, I let me start with um that some people that were around me uh originally afterwards who were very supportive through all of my treatment and everything else. There is an expectation of people around you that you will just get back to it. And uh we're very different people coming out the other side. You're never the same person that you were, and I probably don't need to tell you that. Um, but i you're a very different person coming out the other side than what you were going in. And that's something, uh another thing that's probably not widely spoken about is that you know, I I've had to actually have the courage to redesign my life and look at how I was living prior to this, and perhaps maybe there was some factors that were impacting um me and my body, and and that might be might be time to change a few things to live a healthier life. So um the people around you um some people deal with it really well, and other people, like I said, are very supportive going through it, but then expect you to just be that person that you were prior, and that's a very hard transition afterwards. And I I did try to get back to that life and then realize that I just couldn't because I just mentally and physically I was not the same person anymore, and my priorities had completely changed, my values, everything that I knew had completely changed.

James Dunn 21:02

And I guess once you come to that realisation and feel comfortable not being able to do all the things you did before, that does make it easier. And I guess when other people understand that as well, yes, that makes life easier.

Nicole Trimboli 21:16

It does, yeah. So uh what I guess I say about that is that then you need to look at who you're surrounding yourself with and are those people supporting the person that you've become or are they still support supporting and want people don't like change, so they don't want you to change. And they don't like it that you've changed. So there are people that can cope with it and keep going on the journey with you, and and there are people that that stay behind and don't come on this new new journey with you as well, uh, no matter how supportive they were through the through the actual um process of of dealing with the illness. So uh yeah, I I surround myself with people now that do understand me and and And you know, have those same values and and um health and well-being is number one in my life now. Health is good health is the one thing you cannot buy in this life.

James Dunn 22:11

Completely agree with that. And yes, having those people around you that understand what you're going through does make a huge difference to your life.

Nicole Trimboli 22:19

Oh absolutely. Yeah.

James Dunn 22:20

So our mythbuster question. Yes. So what's one myth or misconception you find that people have about people with

Stigma And Myths About Ostomies

James Dunn 22:29

an ostomy bag?

Nicole Trimboli 22:30

Well, the worst thing I've ever had somebody say to me is, oh, I didn't realise that you had a bag. I can't smell it.

James Dunn 22:37

Wow.

Nicole Trimboli 22:39

That's lovely, isn't it? So yeah, it and I think one of the can because of what it is, it's poo. Everyone thinks it should smell. So um, and that that you're gonna live a restricted life because of it. And I think uh people feel pity for you and that you you live like that, but life's what you make it, and yeah, um I try not to let it restrict anything that I do really or anything that I want to do. I still push through and try, try to still make sure I'm living a good life. But yeah, I think I think the smell and the the ick factor is yeah for people.

James Dunn 23:24

Yeah, well it's something that most people just wouldn't be familiar with. So I guess some of those reactions are out of I guess ignorance, but also just being uncomfortable because you don't really understand it.

Nicole Trimboli 23:33

Well it's and it's them that's uncomfortable, not me, because I'm very comfortable about talking about it.

James Dunn 23:39

Yeah, which is great. Yeah. And I know that's helping a lot of people, not just in exactly the same circumstances as you, but many others as well. That's right. Living with cancer, living with illnesses. So it's a good segue into your book. So you've written a book called What a Shit Show.

Writing What A Shit Show

James Dunn 23:55

And I have to say I absolutely love the name. And the book's about your experiences living with cancer and an ostomy bag, and how you've gone about redesigning your life. Can you tell us a bit about what inspired you to tell your story in book form? And what do you hope people will learn from it?

Nicole Trimboli 24:12

What inspired me to write it is I guess I wish I had that book when I when I went through it, and it's it's my gift to the world. Uh and if it if it helps somebody else uh just feel like what they're going through that they're not alone is um yeah, and it and it in ill for illness in general, not just not just what I went through the same. So I think it it is a lot about what we talked about, you know, coming out the other side a different person and the changes I've actually had to put in place and also future diagnosis beyond the initial diagnosis. I also, not long after treatment, got diagnosed with type 2 diabetes as well. So, you know, there are complications and other things that happen as a result of treatment and you know, actually surviving something like this. And these things are things that then you have to go on and it it's added, you know, with what you've got to live with. But like I said, I did realise that there was a lot of changes in my life that I needed to make for health and well-being and um diet, mental health. I, you know, I actually studied and became a meditation teacher because I found that meditation really helped me through my treatment and that I really want to help others to do that too, and not in I guess a real woo-woo kind of way, but it it's it's something that you can do privately that actually helps with your mindset and helps your body relax and and cope with things. And you um I also do some yoga and things like that, and I just wanted to share those things, and one of the biggest things was um that I turned around with myself was learning to love myself again, learning to love who I was truly inside. And that meant that I had to take some time away from everybody that I loved and everybody I cared about, and I needed um to just spend some time by myself and figure out who I was again beyond this illness and what I wanted out of my life, and you know, was I prepared to let this stop me getting what I wanted out of my life? And the answer was no. So then what are the steps that I needed to put in place to actually achieve some of that? And I guess one of the biggest achievements was writing my book, actually, you know, sharing that with other people, and it it all makes it worthwhile when you um do when I do my speaking events and things, and I say uh someone in the audience says to me, Oh, it's really helped me through my treatment or something, and that's all I ever wanted from it. So it's made it all worthwhile. There's a lot of things not listening to my internal dialogue too much, you know, you can really get in your own head, and that can really get in the way of your moving forward as well. But they're just it's just all the practical things that I use to to really turn myself around. And and I can honestly sit here today and tell you I absolutely love my life. I've moved my life to the beach. And and you know, I I really, really love my life now. Yeah, probably more so than I did before cancer. So yeah.

James Dunn 27:45

That is really good to hear, Nicole. And it it must be really uplifting and rewarding for you when you hear uh people say to you that the book has helped them so much. As you said, that was your primary purpose for for doing it. Was it also therapeutic for you, the process of writing the book?

Nicole Trimboli 27:59

It was, and it was it was also difficult um to revisit some of those really dark times as well, but I needed to do that too. I think, in a sense, it was probably therapy for me to write it and share that. And I always say that I'm glad I waited the four years post-ilness to write it, because had I have written it straight afterwards, I think it would have been a very different book because I hadn't done the work. So I think, yeah, I was meant meant to wait and write it, and it's been written with love uh for everyone in it and and everyone that receives it.

James Dunn 28:37

So it sounds like that delay has really helped because you could obviously write about the experience of having cancer and then also having the stoma and the ostomy, but then as you say, it's so forward-looking and you've got all these tips and tricks for people about how to, as you say, redesign your life. So you do both, which I'm sure is why it's so popular.

Nicole Trimboli 29:01

Yes, yes.

James Dunn 29:03

Was there a moment or realisation about your journey that you realized during writing the book?

Nicole Trimboli 29:10

I think the realization uh really came from spending that time by myself. And then I guess the elation from that was standing there at my book launches, the two book launches saying, Oh my gosh, I've actually achieved this, you know. Um, and anyone that knew me before this, I was never very good at following through with anything. I used to start a lot of things and not finish them. So I was like, I was like, oh my gosh, I've actually seen this through to fruition. But it's inspired me to do more now, you know, and actually follow through on other things. So that's great.

James Dunn 29:50

Sounds like it's been a real launching pad for all the other things that you're doing. Yeah. So you love to travel, and you've recently been on a nine-week holiday to Europe. What are some of the challenges that you've experienced while traveling and what

Travel Strategies And The Sunflower

James Dunn 30:02

strategies have made travel a bit easier? And has the sunflower helped at all?

Nicole Trimboli 30:06

Yes. Well, this is where hidden disabilities came in to my life. Um and I really think that traveling now, wearing the lanyard, uh, has made a huge difference. Like this trip, I noticed a huge difference to previous trips when I travelled without it. I think it's becoming more recognized, and I think it's such a wonderful, I'm such an advocate because uh the flight crew on the planes, they they recognize it. And actually on one of my flights I had two people sitting behind me that had them on as well.

Speaker 1 30:38

That's great.

Nicole Trimboli 30:39

So um I think it's yeah, it it it's it's opened up um a world for people like me because to look at me it when I'm dressed, you wouldn't know that there's anything, anything going on. And it helped me go through security as well. The security uh thing, I always get um pulled aside. And one of the challenges that I always come up against is um I look like I'm concealing something, so they need to pat me down and have a look at what's going on. Yeah. Um, and also on a domestic flight previously, I had um had them pull apart my little repair kit and pull all of my medical things out on a counter, which was probably really unhygienic and and all of that, because I'd accidentally left a pair of scissors in there and I was treated like an absolute criminal. So um yeah, it was just an oversight on my part, but then I was just left to pick all those things up and put them back in myself. You know, um they'd gone through it and to try and find what they were looking for, and yeah, anyway. But uh it was yeah, so it's really helped this time around to not have those those things happen and uh to know that I'm carrying medical supplies and that there is something going on. I think also um to um alert the the people on on the flight that I might need to use a toilet for a bit longer, you know, than everyone else as well, because I know sometimes on flights people can get quite annoyed if you're in the toilet for too long and they've stuck banging on the door and and all of that. So I let the flight crew know that that's the situation, you know. I I'll be fine during the flight, but um, yeah, I may may have an issue with that. So that was good. And I I did a little bit of toilet reviewing as well while I was while I was traveling around on my Instagram, and I found that some toilets were were a real challenge for me, you know, not not very um conducive uh and there wasn't always a disabled toilet available. But I think the biggest thing um with traveling is just, you know, I've I've really got this can-do attitude now that I won't let it stop me. And we developed a bit of a routine during the day where we would stop and have a coffee in the mid-morning, and that way I could use a toilet in a cafe, and uh, you know, again mid-afternoon we'd have a cup of tea somewhere, and and that way I could use a toilet because some of the public toilets in Europe were terrible. So we were doing that, or um pay for some of the the better ones, you know, to go in and out of. But it's it's very doable, it's you know, you can manage, and it's just once again the preparation diet, um, having the right things on you. I always carried my backpack with everything in it in case there was an emergency, spare change of clothes, that kind of thing. But um, yeah, I had a great nine weeks away. And the biggest challenge I had on my nine weeks away was a week and a half before we came home. I had a suitcase stolen on a train. And that suitcase contained all of my ostomy supplies or 90% of my ostomy supplies.

James Dunn 34:00

Wow, that must have been very stressful. How did you deal with that?

Nicole Trimboli 34:04

Well, I it was such a shock. Uh, it was a carry-on suitcase, and it had all of my sprays and creams and everything in it, and it had probably about 30 of my ostomy bags. Fortunately, I had packed another 10 in our larger suitcase, and that had been my strategy from the beginning was to divide and conquer, even um on flights. So I at least had the 10 bags, but if it had happened a week into our nine-week trip, I would have been in all sorts of strife. I would have had to go to a hospital or engage my friends um at Colloplast to help me out, maybe. But um, it was yeah, it was um a big shock. And yeah, I did, I did panic a little. I actually think my partner panicked more than I did. They got two of my books as well. So hopefully they'll read them and understand what they actually found in the suitcase.

James Dunn 35:02

That's right. Hopefully there's a still believe to this.

Nicole Trimboli 35:06

Yeah, I was more upset I lost all my toiletries. So um, yeah, look, uh, and I think it was just a matter of saying, well, there's nothing I can do to change this. This has happened. I have to just work around it now. So what is it I can do to get by for the next week and a half? And my partner was saying, Oh, that's it, we're gonna have to go home, we'll have to change our flights. And I said, Oh, well, hang on, no, no, no, no, no. They are not gonna beat us.

James Dunn 35:32

Absolutely.

Nicole Trimboli 35:33

So, yeah, but I was upset. I did get upset and I did have a cry when it first happened.

James Dunn 35:38

Of course, yeah.

Nicole Trimboli 35:39

But I turned it around.

James Dunn 35:41

Well, it sounds like you know, you've obviously become much more adaptable because of this, and that's another silver lining because these things I'm sure happen all the time. Yeah. Uh these challenges are thrown up, and you it sounds like you've just got that mindset of, okay, well, how are we gonna overcome this and keep moving forward and it's not gonna defeat me, which is great. But that's an attribute that you've probably strengthened.

Nicole Trimboli 36:02

Yes, yes, definitely. And I think, you know, we we got back to the hotel room and we both said, you know, neither of us are hurt. Uh, you know, let's look at the big picture here. That's right. Yeah. Um, they got what they got, but how do we move forward? So yeah, I think it's about what you can do.

James Dunn 36:20

Absolutely. Well, you grace you raised some great points there around travel and it's still possible. Um, for many people, the preparation's just different and you have to really think ahead, and there's a lot of planning involved. The airport scenario, it's so good to hear that you're having a good experience with the sunflower, both in the airports but also uh in you know on on the planes as well. That's certainly my experience. Security for me I know is a lot easier um having to stand up for as long. So that's a a really big plus with the sunflower for different reasons, but I can kind of relate to your your toilet um scenario as well and your increased knowledge of them. But with my condition, I I go to the bathroom very frequently and you do become a lot um more accustomed to to doing that and and realizing that a lot of bathrooms are not very pleasant and and also not always available. I was fascinated in the UK about three years ago when I was travelling there that there seemed to be so so few of them and it was quite stressful sometimes trying to trying to get to them.

Nicole Trimboli 37:33

Public toilets are not a thing. Uh you know, there we struggled to find a lot of public toilets uh throughout Europe, I will say. Yeah, unless you go into an establishment. Um get quite sneaky with some hotels. I just uh walked in the front door of the hotel like I was staying there and then just identified where the bathroom was in the lobby and away I went.

James Dunn 38:00

I can absolutely relate to that.

Nicole Trimboli 38:02

I am a lot bolder than I've been with some of those things. Yeah. You gotta go, you gotta go.

James Dunn 38:08

Absolutely. I do that a lot these days, and I completely agree. So what was our final question? In addition to those examples you've already provided, what's one small change that individuals or organizations could make tomorrow to

Stop Judging Disabled Toilet Users

James Dunn 38:21

improve the lives of people with an ostomy or any other life-changing non-visible illness?

Nicole Trimboli 38:26

Okay, well, I think the big one for me, and that a lot of other ostomates tell me that uh they've experienced some extreme judgment for using a disabled toilet. And my me, myself, I have too. I've come out of a disabled toilet and had disgusting looks and and that as if um you why are you using that? It's for a disabled person. And I've actually had uh an ostomate come up to me and tell me that she had a horrible experience. A lady was really, really angry and rude and followed her in the shopping centre. And I think, you know, don't judge people who don't look like they're disabled because hey, hidden disability is is a thing, uh, a big thing for a lot of us. And just because we don't look like we have one, yeah, please don't judge if someone's using the disabled toilet. And to dispel that, um, please, everyone that has a hidden disabil disability, please wear a lanyard because it it's it's awareness and um it may stop some of that that perception from people who are not disabled.

James Dunn 39:33

Yeah, that's a great tip, Nicole. And I think if we were all able to do that better than we do, the world would definitely be a better place. And there's certainly lots of experiences I've I've had where people have assumed that I don't have a need to use a disabled park, for example. That's that's the experience I've had similar to yours where somebody's got frustrated at me for for using one without any knowledge of why I might need it because I look fit and healthy.

Nicole Trimboli 39:56

Yeah.

James Dunn 39:57

And the same experience for you with the toilet. So that's that's a really good one.

Nicole Trimboli 40:00

Yeah. I don't think I need to pull my shirt up and prove to people. No, you absolutely shouldn't need to. No.

James Dunn 40:06

But it's great that you're having good experiences with the sunflower. And as you say, it is growing every single day. And more and more people know about it. It's just becoming easier and easier for people with non-visible disabilities wearing the sunflower, which is great. Well, thanks, Nicole, for sharing your story with us today. I'll be the first to admit that I had very little understanding of what an ostomy was before I met you. And I've learned so much about what it's like to live with one. So thank you. And thank you for writing your book. I'm sure that's having a big positive impact on people. I think having to experience not one but two separate cancer diagnoses is beyond what I could imagine. And I think the strength and resilience that you've shown to work through those experiences and then turn them to such a positive to help other people is truly inspiring. So thank you for sharing your story today and coming on the show.

Nicole Trimboli 40:56

Thank you for having me on the show, James. It's been an absolute pleasure and I've loved talking to you.

James Dunn 41:01

Thank you for joining us for another Sunflower Conversation. Please keep the conversation going via our website, hdsunflower.com forward slash

Keep The Conversation Going

James Dunn 41:09

AU, on Facebook at Hidden DisabilitiesANZ, on Instagram at hidden disabilities underscore ANZ, and on LinkedIn at Hidden Disabilities Sunflower-Australia and New Zealand. You can also visit our website if your organisation or an organisation you know is interested in becoming a Sunflower member. If you would like to submit a question for one of our guests to answer on a future episode, please direct message us on socials or email us at hds events at Bailey House. That's B-A-Y-L-E-Y-H-O-U-S E dot org.au. Please help, have patience, show kindness to others, and join us again soon, making the invisible visible with the Hidden Disabilities Sunflower.