Just be there for me

When someone you know or love has received "bad news," your response makes an enormous difference to them. Sharni Hartley was a young woman diagnosed with cancer who wants to let us know what people said to bring her comfort. There's also a few tips in this conversation on what not to say. Sharni also found her tribe with an organisation called Cancer Chicks who cater for young women with cancer : www.https://www.cancerchicks.org.au/

Transcript

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Today's podcast is going to be slightly different to what we normally do. Normally we talk about natural medicine and all the integration of natural medicines into medical treatments, but there's a whole world out there that's really important. And this world is about people that have had a diagnosis how we interact with people because I'm sure my guest today will talk about how you win and lose friends when you've had a cancer diagnosis and also the after support after you've gone through that some of the treatments, and most of them are pretty horrible treatments, what happens next And in too many cases people just get left hanging. And we want to find a way to make life much easier for people and give them a more enjoyable path out once they've received an all clear from their original diagnosis. Without further adieu, I'm going to introduce my very special this Sharni Hartley. Now Sharni Your name is Shanielle, but I'm calling you Shani. Is that alright? Yes, so. It's Shanielle. Kind of like Danielle, but Shanielle. OK. But Sharni Sharni is easy. Thank you. Sharni, when you were 28, you were diagnosed with breast cancer. How did that diagnosis come about? Really I was. I had done a chest workout the day before. I was at the gym the day before and then the next morning I was just sort of stretching, pushed my arm to the side to just to stretch my arm out, really stretch my stretch my chest out and just found the lump. It was as simple as that. I just found the lump and pretty much it was this initial gut feeling. I went, ohhhhh, I know that's not right. That's not something that's supposed to be there. Fibrocystic breast lumps are also common. So there are different sorts of lumps. What did your initial reaction go? Oh, that's cancer. Or did you initially think, oh, this could be just a, you know, a fibroid lump in the breast? Look I don't know if it makes me a pessimist but was it was just a gut feeling I went I think that's cancer and I can't explain it feels like I had I've been aware of this for a really long time in my life. It felt sort of like a knowing and I remember when I was really young actually I took I think I was like 15. I just took myself off to the doctors because I went I think I've got breast cancer and and and it just I don't know you know maybe I had someone had was talking about it or maybe someone I think one of my mom's one of my friends moms was diagnosed. It was sort of in the in my space at the time and I had felt some sort of lumps and I understand you know we've got our just all different lumps and bumps anyway in our body and took myself off to the doctor. I said I think it's breast cancer and he said no, you know it's it's nothing. You're fine. Interestingly in the exact same spot as where my cancer was then found you know when I was 28. I mean that's a really long time and it's probably just a coincidence maybe. But just so when I did feel it then I guess this sort of paint the picture. When I did actually feel it, I went, no, that is cancer. I think like that's actually it. Yeah. Do you have a history of breast cancer in your family? No. So I'm just wondering when you were 15, what made you think that way, just just just random? Yeah, just I didn't know what it was. Yeah. I think again, I think a friend of mine, her mum had breast cancer, so maybe that was around the same time, but yeah. You got booked in for treatment. Really quick. It was such a quick, speedy thing I I went straight to the doctor and she was like, OK, you know, go to the specialist and pretty much within 24 hours I started treatment. OK. And treatment started off as a chemotherapy. Actually, well, yes. Direct cancer treatment started as chemotherapy. I had to do IVF first for all of that, you know, to preserve those sorts of things. And then and then, yeah, it was so within a couple of weeks, it was, you know, 10 days or so. It was chemotherapy. If I remember correctly, you had some significant side effects to the chemo. What were they? What was the worst of it? It felt like any any side effects you can get. I feel like I was just, you know, amoleh proving that you can get them. But the nausea probably was the worst of it. And I think just it felt like a cyclical effect of I would try and take the medicines and do the things I needed to do, but then that would make me sleepy. And then the doctors would say, but do you feel better? But I don't really know because I'm asleep. And then I, you know, like it just was this. I just couldn't participate in life. And then it went on to the normal one common I should say surgery, radiation and immunotherapy as well. So how long was the whole process for you? Well, I finished up my radiation in October just recently and I started my treatment on 21st of November last year or something. Like that, so 2022. Yeah. OK. Process, yeah. Yeah, yeah. No, absolutely. Yeah. And you're a singer. And I guess singing was off for about a year. Yeah, yeah. Well, certainly the performance side of things. And interestingly, I found it a bit tricky to start singing again. I'd sort of thought, oh, you know, it'll be a nice release, a way to sort of get through. I get through some of the things and let my my emotions out and things like that. But it it was tricky. It was tricky to do your perspective and a lot of things sort of changed in an instant. Me it did, at least when I was diagnosed. So then I was finding it hard to connect to what I would have considered my life, you know, BC before cancer. Yeah. So yeah, yeah, but yes. Then I did start singing a little bit, which was nice, but mostly off the cards. Because a lot of people who have gone through cancer often report a significant loss in self confidence, HMM and inhibits them from going on or going back to what they did before or branching out. Where do you think that comes from, that loss of self confidence? I think for me it probably comes from maybe a lack of trust. I kind of kind of broke the trust system with my body. It feels a little bit like, you know, like with knowing myself and knowing my body and knowing what my threshold is for things and what I can really do. I think that was really tested and and and and kind of broken when I was diagnosed because you know you think oh like my body betrayed me a little bit and then you lose your your capacity to just even for me I couldn't stand up and have a conversation with somebody for very long. Like my blood would pull in my legs. So I just couldn't do the things that were so basic. So every day I was faced with that and then so I just didn't know how far my my capabilities were going to branch out. And I think you get scared to to really face, you know, I would have hated to actually try and start singing again and then maybe I couldn't. Maybe there's another side effect where something, you know, things like that. I think you get get scared of that. So the things that many of us who are healthy at that time take for granted, you have to make big decisions about everyday. Absolutely. I had, you know, I really could do one if that I could do one thing a day, you know, that maybe go for a walk or that was you sit and have a coffee with somebody that that would wipe me out. I'm I was done. When you were first diagnosed, mentioned that there was some fear and trepidation around how you tell people and who you tell first. Can you just walk us through that? Like if you're around family or friends, how you approach that? Yeah, absolutely. So, you know, there were, there was the obvious first call. I called my my mother straight away and it was very blanket statement. A couple of the people who had, you know, my mom, couple of people knew I was going to the doctors anyway and in a sense may have seen it coming like they were prepared for a phone goal of some sort. So that was a little easier to to break that and just go. By the way here we go, this is what it is. Everyone, just a lot of people in that circle snapped into action, went, Oh my God, what? Let's go. You know what we need to do next. But then after I that immediate circle, each time you're telling the story, it's you. You're reliving it again and again and again, and it's also just happened. And so it's a really tricky thing to continue to go over all the time. You're getting so much information. When it came to telling the next circle of friends, I really had to be, I guess we protected that. I couldn't tell everybody individually and all those sorts of things because it just it was hard to go down that road every, every time. Absolutely. I understand that. From my experience, when people have diagnosed with cancer particularly, everyone wants to help you and everyone. So there's two groups of people, I think those that go, I know the best doctors, I know the best surgeons. Let me put you on to them. Have you tried this? Have you tried that? You know, I heard that green tea is good. I heard that this chemo is good, all of that stuff. So you get all this avalanche of information thrown at you. Is that did that happen with you? Yes, it did. It did. OK, so how did you how did you walk through all of that? Because people do it out of the goodness of their heart, I think. But it's like daunting. Absolutely. I at first I, I really tried to take on a lot of what everybody had to say in there. Oh, my friend, I'll, I'll get you in contact with that person because they've, they've been through something similar and all those sorts of things. So at first I was really trying to take it on and then I just had to sort of take it with Grace and say thank you, thank you very much. And then not really go into it any further. You know, once I hit my, my quota of I can't take on anymore new information and I and I'm already hospitals calling you so many times in those first couple of weeks and well my hospitals, they call on a private number, so you can't call them back and then you just wait like so. So you're waiting by your phone and so then to be as as much as it's so lovely, but to have phone calls all the time from lots of other people, you're sort of like, I can't, I can't do it all. And I'm just sitting here in shock as well, so I can't even process what you're saying. Yeah, I understand. Yeah. And then some friends are good listeners, and they'll just give you a hug, which is probably what you want more than anything. Hmm. But some will try to say things to make things feel better, make you feel better, I should say, but don't always get it right. And some just can't talk to you because they just have a fear of what they're going to say. What sort of experiences did you have around those sorts of incidents? So I guess to paint a picture, I had one really great friend who she was aware that it was happening. So I guess she kind of had a bit of a a lead up. She knew I was going to the doctors and we had plans to. The morning I was diagnosed in November, I went to the doctors and we had plans to go and have a picnic after in that afternoon and essentially I was diagnosed. Then I I called her and said, look, it is cancer. I'd love to still see you though. Like, can we just keep the plans as they were? It's nice plans anyway, to go have a picnic in November. Yeah. And and and so we did just that. She saw me. She gave me a hug and and we just went and had a picnic and she brought a cheese board and we just sat and it was kind of we we talked about other things, but it was every now and then we jump in and go, Oh my God, what's about what just happened this morning? I can't believe it. And then we'd go back to just talking about other stuff because it just, it felt like, OK, this is a normal thing still, you know, my life will continue in some way. It's not. This is. Yeah. So that was fantastic. That was great. It was. I think it's a hard line to to know where it is, I guess. Sorry, it's hard to balance acknowledging it and then ignoring it and not wanting to you know do too much of of either of them. So that so that was fantastic. But then I guess on the other side I had some friends who I guess didn't know what to say and in that kind of didn't say anything. And that was probably one of the it's, it felt like a very big loss in general, but that was probably one of the biggest blows of that, of that. In time. Just just having people who backed away entirely really, really tricky. So that tests your relationship I guess, or actually So what I'm learning better just to say something to someone that's just had a diagnosis, what sort of things would be appropriate to say? Because one of the things I know that people say and and happen to you was, oh, lucky, you've got the good type of cancer. Oh my. God, I know. Yeah. Oh, wow. Thank you. Yes, I do feel lucky. No. Yeah. Look, honestly, I think. I think it's so I guess what I what am I trying to say? I understand that many people and especially my age group and and in my circles don't know what to say because they've never really experienced it. Maybe they've had a an A relative or an aunt or an uncle or something like that, but somebody, their age, their peer, they haven't. It's not as common, right? So I understand that you don't, you don't understand it because you haven't experienced it and I'm so glad that you haven't had to experience it. That is great. I don't want you to have to know what it's like. That's not nice, but then all you need to do is say I don't even know what to say. This is shocking because mostly I don't know what to say either. Like, I don't know. It's just, yeah, it is just it's a reality. It's it's the card I've been dealt and to sit here with me and that's that's really what people want, well, that's what I wanted. So it's really just an acknowledgement, yeah. Just an acknowledgement, yeah. Yeah, and just to have a a happy person next to you. Yeah, yeah. And just somebody who's willing to to hear about. It when you feel like talking about it. Yes, exactly. I'm sure there are dark times as well. You know when you have dark times and they might be when you go to bed at night and you're just lying in your bed by yourself. How do you deal with that sort of stuff? So that that's really tricky because that will change. It really depends on on everything that day as well because some days I I'll I'll think about it everyday whether I'm in treatment now or not. It it is. Every single day. It's it's and it's mostly when you get to bed at night and if the day's been OK, I can pretty pretty easily go OK Yep, that's something. And I can acknowledge it and try and distract myself and move on and that that'll happen other days. It's certainly not as easy. And at the beginning of treatment, I actually, you get online you you get on Instagram or you get on Facebook and you try and find groups of people that really get it because again like I said there's a lot of people who don't. And that's good. But you need sometimes you just need somebody that you can message and go Oh my God, I feel like right now for me at at the stage that I meant Oh my God, I feel like it's just going to come back and then they know. They know. Yep. I know I felt like that yesterday. I get it. And then you can just, you know, interact on that level and then get it out of your system and then you feel OK. Yeah, and and are there plenty of these types of groups online? There are groups online, that's for sure. There's some fantastic groups out there. There's not a whole lot for people in in the young young adult age group. For for cancer. Yeah. So that's something that certainly needs, you know, more and there just needs to be more information out there. In general, for young people with cancer, it sort of feels like there's there's children. We understand that the children can get it and then there's sort of above and maybe 40 age group that there's that middle gap in there where it feels like we're kind of we don't really fit into a lot of the stuff, the resources. I guess it's really important and you would have started to tell the difference into what you'd like to hear from the various doctors and nurses and oncologists and any other specialist she saw. So can you give any examples, if possible, of how you liked the way a particular doctor or nurse approached you and how you didn't like a particular way a doctor or nurse approached you? Absolutely. I was it actually it'll happen right at the very beginning. So my the doctor that I I feel for her because I had never met her. I only, I found the lump, went to sort of the first doctor that was available. And then the second time I had ever seen her in my life, she had to tell me that that I had breast cancer. So that I understand that that's a hard thing to do. But we had not even walked into the room yet. My partner and I and we hadn't even sat down. She opened the door and she said, oh, it's good you brought someone. It's bad news and like the door wasn't closed behind us. We had I hadn't even said hello like so that was something that I understand it's it's an everyday, no not hopefully not an everyday but you know it's kind of it's part of her job But for me that's life that that's life changing news and I just needed a moment you know you had it you know so so that that was abrupt and that was tricky. But then on the other hand my surgeon and my oncologist were just legends through the whole thing and in particular really both of them actually. But my surgeon doctor Susanna Graham we sat down I so I saw her on the Monday after the Friday being diagnosed and that weekend we actually didn't have all of my test results back. So all the doctor on Friday could tell me was you have cancer? I don't know really exactly what type and I don't know where else it is. And I don't know there were so many unknowns. It's just you have cancer. Go and see a specialist. It was Friday, had to wait till Monday. That was the longest weekend of my life. Sure. And then we walked in on Monday afternoon and Doctor Graham, she just, she sat down and she turned her whole body language square on with me. And she sort of had her arms on on top of her legs. And so she was leaning in to look at me in the face and she was like, OK, this is what you have. This is what we're going to do. These this, this is it. And and bring it, bring your paper in and ask me all the questions. You're going to forget everything I tell you today. That's OK. You know, she just was straight down the barrel, told me what I needed to do. And I felt safe. And I trusted her instantly, Just met her because she spoke to me like a real person, you know, having a real interaction. Yeah, yeah, What a wonderful connection to start with. Yeah, it was great. Oh my, I was so lucky cause I, yeah, I didn't know. I had no family history. We didn't know where to go or anything like that. So you know I was just referred on to her and she just was just fantastic. And the same with my oncologist, a very, you know they they connect a lot as well. So I was able to just say 1 to one, one thing to one person and they just, oh, she'd go, just send him a quick text message and see what he thinks and then, you know, so it was just fantastic. Well, yeah, you did find the right people there, and that's wonderful. But there's a lesson there for the medical professionals on how they, you know, announce the condition and and how they connect with you. So important to towards the long term therapy, isn't that? Think something important to mention too is both my oncologist and my surgeon were obviously we had to talk about my age and and lots of different things that fertility things and all those sorts of things that are part of the conversation. But it was never, you know, there was some other medical professionals who most of the time I'd walk in, let's say to get radiation or whatever, and they go, oh, you're so young, but you're so young. And no, that was that was a hard thing to hear. Each time, you know, said OK, well, yeah. And And like I don't. Know your point is. Like, I know, right. Like, what do you want me to do? You know, so like they my oncologist and my surgeon, they acknowledged my age and all the things that we needed to do because of my age. But it wasn't like a oh, but you're so young. How did this happen? It's. Yeah, you know. Yeah. It's not my fault. Yeah, yeah, exactly. Exactly. Yeah. If you could go back until your pre November 22 self that you're going to get cancer, what would you do differently if you were going to do anything differently? I would say to slow down in making big decisions probably I think you're trying to really quickly alleviate any sort of discomfort. So you know we were living in a small house with our dog, my partner and I. And straight away we're like, well, we have to move and we and we have to, we have to be in a bigger space and we have to be nearer to family and and it's great to be near family, but you know, just it was like in that first two months it was just chaos and it was already going to be chaos with the diagnosis. It didn't need to. I was. There wasn't that much of A rush to improve on those things. Yeah, you know, we we did need a bigger place and we did need to be close to family. But that could have waited a couple of weeks just to catch your breath, find the right place, make those decisions slowly. Because it felt like it was a, Oh my gosh, what are we going to do? Let's scramble and and try and fix it in any way that we can. I think we were looking for ways to control things and and we just couldn't. At what point did you get an all clear? It was just before, straight after my surgery, so just before I started radiation. And again I walked into Doctor Graham and we sat down on the on the little couch there in her room and she went, OK, it's all gone And and oh, OK, great. Yeah, it's good. Got it. That's all good now. I was like, OK, cool, thank you. Bye. Like, yeah, it's surreal for sure. So was your partner with you? Yes, yeah, my partner and my mom, yeah just were like and then it was kind of because I went to Lifehouse, which is a stand alone cancer centre. So we walked out of there and it was sort of this thing of we wanted to celebrate, but I understand that there's a lot of people in there who were still going through it. So it was this, you've got to we kept it in, waited till we got in the car and they were like, oh, OK, now we can. But you just sort of you gotta be respectful of what everyone else is going through. I know, I guess just a quick thing. But there are a few days where you're sitting in the chemo chair and you hear the bell ring because someone's finished. And sometimes I'd hear it and be like, yes, that's so good. I'm so happy for that person and and actually gives me goosebumps thinking about it, like that's going to be me. And then there are other days where I'd sit there getting my chemo and hear the bell ring and feel like I'm just never going to get there. I don't want to hear that you wanna know, like, so I think that's a really, it's a it's a it's a interesting one, I think just. Yes. How are you supported through those moments? Is there anything you could say to someone's partner or mum or dad about how they could support you through those times? The tricky thing is and like we sort of said earlier, there's a lot of the time there isn't a right thing to say. So it's it's more about just listening and going. Yeah. I can imagine you do feel like that and then that just makes me feel like I'm it's OK that I feel that way and you're not trying to sort of just jump in and save the day. I know that you don't get it and then you said yeah but but, but but it'll be OK or you know there's, I don't know you'll see that there's a positive out of this or something like that and here you know I just. I can't take that on. I just want you to. I just want you to know that I feel bad about this right now. Going to say fair enough, it's not very nice and you go no it's not and then that's it. Take a breath and move on. Not you know. Yeah, well, that's that's a really important lesson for everyone. Absolutely. You would then joined up somehow in the mob called cancer. Chicks. Yes. And so as I mentioned earlier, so you know late into the evening you scrolling on Instagram and trying to find you know use the hashtag like young adult cancer or breast cancer under 30 or and and I found cancer chicks through Instagram, they've got a Facebook page as well and. So that is that chicks, CHICKS or right? Yeah, yeah, yeah. And there are specialised group for chronic illness and cancer for young women which was just like just so fabulous just to find them. And and I it just so happened that I found them and then maybe the next week they were running a workshop like a scarf tying workshop at A at a great little shop in the city area for memory. And it's you know, it was free. It was an event. Just go and give it a go and you got a beautiful scarf from it and you learn how to do it and they scrape stylist. He came and he showed us how to do it all different ways and and it was just this yeah, I remember just applying or you know like trying to get a ticket for it essentially. And and it was it was next week and I just thought oh I was so sick. I thought I don't know. But I'll just put my name in there and just get it and just see. And the day came and I'm so glad I made the effort and slept and the day before all day to like save up my energy and then went to this this thing and met all these beautiful people and everybody was at a different stage because even for me now like I I've just completed my like active treatment. But I'm still connected with them and I'll still go to the to to the events and things like that. So then other people who were where I was at, like can chat to me and I can say, oh, when I was doing chemo, I tried this and that helped and it was just nice to meet people like. That like minded people? Yeah. So what's the what's the purpose of cancer cheques? What's What's? What are they really being set up for? I think what they're trying to do is create a community of young like minded people, women who are kind of trying to be realistic about what it's like to have chronic illness or cancer as a young woman and and and to just and not just not sorry, I shouldn't say just but not pointing to resources and going you know, go talk to these people at it's council, go talk to these people at this thing go talk to. But it's all in this hub and let's just hang out and feel like we can be part of something. Keeping it real. Yeah, yeah, exactly. So it sounds like it's a it's a wonderful environment to receive that support that's so sorely needed and often missing. Something about maybe? I sort of just like hit the jackpot with the people that I have connected with in the group but it's really tricky what especially when you're going through the treatment to keep up with anybody to have like I said I couldn't hold conversations very well with anybody. I my, my, my Kent chemo brain which is still a thing happening at the moment for me like was was really out very very fuzzy mind all that sort of stuff. So to to make new friends is really tricky as well when you can't even keep up with your your other life you know. But it's low, low maintenance relationships that we all understand that this is this is a bubble and this is a part of our life and you're gonna be there when we need to talk. You know if any of the girls messaged me now like today, I I can chat to them but there's nothing that's going on. But you didn't talk to me two days ago and asked me about how my whatever went in my other part of my life it's we understand this is what this is for. And you know I messaged her one of the girls two nights ago. I was having a a moment where I thought Oh my gosh what is this? I can't believe this happened and I feel like it's going to come back and all those thoughts came rushing in and messaged her late into the evening. She got back to me later on the next day and was like, I get it, I understand and that was it and we didn't have to then go also sorry how's your. It's low maintenance. It's just it's just really, really good. And that's really important when you come out of a long term treatment programme and many people just don't know where to go or what to do. And partners and friends just don't know what to do and how sensitive you are and how vulnerable you are. And not just emotionally but physically as well. To have that support network like Cancer Check sounds like it's really quite a perfect environment to have a group of like minded people just to bounce off. Is that a fair comment? Absolutely. And there are a group of people who really understand the fact that having cancer is not the most tiring thing about having cancer. Just the cancer part is not that, yeah, that's awful and and we have to treat that and and all those things, but it's all of the other stuff that you just don't even think about the day-to-day things and they they really get that you know they've been there. A lot of little things to manage, which you probably don't even realise when you're healthy, but. You don't? No. You just don't. Absolutely. Yeah. You are a light. Thank you. And it's just been wonderful talking to you. And I love your brightness and your enthusiasm. Congratulations on getting through a tough journey and finding your tribe. Thank you. Yeah, it's just so it's so good to be able to share this stuff. It's really important. Yeah. Look, thanks a lot of guts for a lot of people to to speak up about this sort of stuff. But, you know, people want to hear it and is that shared experience that we all learn from and we all benefit from. So really, really appreciate you having that guts to do it. Thank you so much. No worries at all. Take care.