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Episode 31: What I wish I knew

Episode 31: What I wish I knew

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about looking back on a breast cancer experience and talk about some of the things you might wish you had of known. Often described as an emotional rollercoaster, no two breast cancer experiences are the same. A common theme, however, is people reporting the immense adjustment required to adapt to a ‘new normal’ once hospital-based treatment has ended. For some there is anxiety, a sense abandonment and difficulty navigating changed relationships, a lack of self-confidence and feelings of grief.

In this episode, we’re joined by Kath Elliott and Janine Keyhoe. Kath was diagnosed with locally advanced triple positive breast cancer at the age of 46, while Janine, also in her 40s received the diagnosis of triple negative breast cancer at the height of the COVID-19 pandemic. Firm friends, Kath and Janine are both passionate about developing more opportunities for those who have finished their active treatment to connect and share their experiences. 

We hear the lessons that Kath and Janine have learnt from their respective experiences, and their reflections on topics ranging from the conversations they had with their families, contrasts in the private and public health systems and the make-up of their support networks to the impact of their breast cancer on relationships and the integration of gratitude and self-care into their daily lives.

RESOURCES:

  • Sign up to My Journey and access a range of resources on treatment and side effects as well as navigating the emotional impact of a breast cancer diagnosis.
  • Visit our Online Network to connect with people going through a similar experience.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

Want to get in touch? Visit our website at bcna.org.au, email us at contact@bcna.org.au, or call our Helpline on 1800 500 258

TRANSCRIPT:

Kellie Curtain [00:00:04] Let's be Upfront about looking back on a breast cancer experience, and talk about some of the things you might have wished you'd known. Let's be honest, the experience of being diagnosed with and treated for breast cancer can be described as an emotional rollercoaster, because of the ups and downs and changes that happen along the way during treatment. Some people find their life is on hold as they navigate their way through the demands of treatment and its side effects. When the hospital-based treatment ends, it can often be a time of immense adjustment. Joining us for this episode of Upfront is Kath Elliott and Janine Keyhoe. Kath was diagnosed with locally advanced triple positive breast cancer at the age of 46, while Janine, also in her 40s, received the diagnosis of triple negative breast cancer at the height of the COVID-19 pandemic. Firm friends, Kath and Janine are both passionate about developing more opportunities for those who have finished their active treatment to connect and share their experiences. This episode of Upfront about breast cancer is an unscripted conversation with our guests. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical opinion. Please exercise self care when listening to this podcast as the content may be triggering or upsetting for some. Welcome, Kath and Janine.

Kath Elliott [00:01:31] Thank you.

Janine Keyhoe [00:01:32] Thanks, Kellie.

Kellie Curtain [00:01:34] So I'm sure it's no surprise to the two of you, that now that you've both come out the other side of active treatment, there must be some things that you wish you'd known on reflection. So, Kath, when you were first diagnosed, do you remember those emotions? Of maybe just that fast, frenetic pace of 'let's get this out'?

Kath Elliott [00:02:03] Yes, I absolutely do. I think those first two or three weeks, I was in complete shock. I think my world had been turned upside down. And it was just it was so much fear and panic, I guess, in those first few weeks. And it's like you've been on your treadmill of your normal life and then all of a sudden you're just catapulted off the treadmill and you're like, what the hell just happened? And I think for most people who are diagnosed there is that that moment in those first few weeks, I had so many tests to attend. You know, I found the lump on a Wednesday. By Friday, I'd had the diagnosis. On the Tuesday I had a port put into my arm. And on the Wednesday, I was starting chemotherapy. And it was just... I couldn't believe it. On the Wednesday, I remember looking back and thinking, this time last week, I didn't know that I even had breast cancer. So for me, it was a huge week or two. And then it slowly sinks in that I think... A diagnosis is a very traumatic experience. It's one that takes some time to process and everyone processes it in their own way.

Kellie Curtain [00:03:26] So based on that, you just mentioned just the sheer express nature of the whole diagnosis. What do you wish you'd known? Now, in hindsight, what do you what do you wish someone had said to you that might have assisted that first week?

Kath Elliott [00:03:47] I think that there would be a new normal with the cancer experience. I think the first few weeks was so full of, as I said, fear and panic, but I did reach a point, I think probably at the third or fourth week, once I had started chemo, where I started to feel like I was getting into the new normal with treatment, and that started to continue each week. The other thing that I guess I wished I'd known was that breast cancer is such a a unique disease, and everyone's experience of it is quite different. And so it was wonderful to hear people's stories about their own experience. But what became really important to me was that it was my experience and that what someone else had told me wasn't necessarily what was going to happen for me. So I think it's really important to remember at the beginning of your own experience, don't take on board everyone else's situation. I was able to speak with another woman who'd just been through, sort of, 12 months of treatment. And the one piece of advice that she gave me was just remember, you're a unique person in the world and your experience will be different to someone else's. So try and stay positive. And yeah, just don't take on too much negativity from other people's experience.

Kellie Curtain [00:05:21] Yeah, which I think when you're diagnosed, even through treatment, everyone knows someone who knows someone that they did this and you should try that. And have you spoken to this doctor and make sure you eat that and don't do that? But Janine, knowing Kath, a friend of yours. So do you think that hindered or helped when you were then diagnosed after her? Did you feel somewhat prepared or is what Kath's saying ringing true about same, same, but different?

Janine Keyhoe [00:05:51] Completely rings true. And it was probably due to Kath that I had a heightened awareness of breast cancer and I'd actually found a lump, but I had a lot of cysts. So for me, I was like, oh, it's another cyst. But I was very aware of what Kathy just been through. So I went and got tested and the ultrasound came back okay, and they were like yup, it's a cyst. But, you know, just to be sure, we would like to do a mammogram. And I thought, oh, there's no real hurry for this. I'm going to be fine. I actually did wait, which is a slight regret, but anyway, you learn, and I went and had a mammogram and actually found my cancer up the back. So it was a completely different area. So I was very grateful to Kath because I then remember calling her pretty much on the day I think I was diagnosed, and it was just great to have someone perhaps speak calmly to me and give me some confidence that I was going to be okay and that I was about to get on the roller coaster of emotions, that I had support with people around me. And I think that that's really important to pull people close and rely on them.

Kellie Curtain [00:07:16] Do you remember feeling fear, particularly when the initial diagnosis was when it appeared that all you would need would be a lumpectomy similar to Kath and then that rapidly progressed to needing a double mastectomy?

Janine Keyhoe [00:07:30] Yes. So that was a real surprise. And that's one thing that I've learnt during this whole experience, is that things can change very, very rapidly. And what you think may be going to happen sometimes doesn't. But look, you know, I was told that I just have a lumpectomy, but then we couldn't get clear margins. So I still remember sitting in that room going, so what does that actually mean? And I was very confused. And I probably didn't really listen after that, because once they told me that, I kind of sat there in my own head thinking, oh god, what's going to happen now? And luckily, my mum was with me and I remember ringing her that night going, so what did he actually say? What has to happen now? So, so thankful that I had someone with me at my appointments who could also hear what was going on, because in that moment, a lot of fear, very frightened. Again, I had someone saying, you're going to be OK. He did say you're going to be okay, but this is what's going to happen.

Kellie Curtain [00:08:39] So practical support is really important, too.

Janine Keyhoe [00:08:42] Definitely.

Kellie Curtain [00:08:43] So we hear about how it's great to have emotional and practical support, but I guess you'd wished you'd known, someone had said to you, make sure you've got someone to not only be there to give you emotional support, but to take notes.

Janine Keyhoe [00:08:57] Absolutely.

Kath Elliott [00:08:58] Yeah, absolutely. Because I think there's so much information being thrown at you in those first few days, weeks. I was lucky because my dad, he's a retired doctor now, but my brother's also a doctor. So I had their support from a medical perspective and I requested to receive all my test results, and that's another thing, you really do need to be your own health advocate sometimes and ask to see copies of all your tests and all the correspondence, because often you don't just get them. So for me, that was really important. Some people maybe don't want to be part of that, but I really wanted to so that I could pass them on to my dad and my brother to have a look at. And we got another opinion from another oncologist friend of theirs as well, which was which was really helpful.

Kellie Curtain [00:09:54] So are you confident, were the two of you confident in asking questions or questioning what was being suggested to you?

Janine Keyhoe [00:10:02] Initially, I probably wasn't, but that was mainly in that first consultation or when they basically told me that the game had changed and we were doing something a bit different. And what I wasn't expecting. And it wasn't until I had time to take that information in, process it and think about it, talk about it with my mum - she was a nurse, so she's very medical and straight down the line, that I felt comfortable going back and going, okay, so what are my options? Is this is the only thing we can do? And actually asking those questions, because sometimes I guess your medical team can have their own opinion and that's the way they want to proceed when sometimes there can be other options you can look at. So I think it's really important to investigate those as well.

Ad [00:10:48] BCNA's My Journey online tool is a new resource that gives instant access to trusted and up-to-date information which is relevant to your breast cancer journey. For more information, visit my journey dot org dot AU.

Kellie Curtain [00:11:02] And obviously the two of you, you have relatively young children and you were both working, so busy lives. How hard was it to relinquish control of the things you couldn't control? Is it, was that an issue for you? I think with with Kath, I remember discussing with you previously that you've really got to just narrow down on the things that you actually can control and try to do away with the fear about things that you can't.

Kath Elliott [00:11:36] Definitely. Definitely. And I think one of the hardest things for me was telling my children, but even now I think about it and I think I had this awful feeling that I was going to be affecting their lives in a negative way. But it's really amazing because kids are just so resilient. And I guess Paul and I really wanted to be honest with our kids. They were at the time, I think 14, 13 and 11 when I was diagnosed. And each of them were in quite different, I guess, developmental phases. So the way they responded was kind of quite different and what they needed. But overall, I feel that they asked the questions really that they needed to. So we gave them the information. We said that, you know, mum's going to be okay. But we told them how long the treatment was going to be, what was going to happen. Mum might lose her hair, but I think initially for kids often hearing that word, cancer, is extremely frightening as it was for me. I heard that word and I... You literally jump to your death bed. Yeah, it's really one of those quite, yeah, quite life changing moments for me. And I, you know, I had dreams about death as well. It was really quite a fascinating experience to go down that rabbit hole and then come out again.

Kellie Curtain [00:13:22] So do you think maybe with hindsight, what you wish you'd known, that you need to be a little more open? But you were open. What are some of the lessons there, that they are resilient? You wish you'd known that they were going to be OK with the right information?

Kath Elliott [00:13:43] Yeah, I think look, I wouldn't change the way we communicated with the kids. I think we did that really well. I mean, I guess what I wish I'd known is that, you know what? They really are resilient and they will be okay and that their schools were so supportive and had their back and our local community and friends were so caring and loving of the kids as well. So I think I had had a lot of worry about the kids, but they were actually they were actually fine, they were okay. And even now when I asked them about the experience, they still say, oh, look, it was stressful, but they had this inherent feeling that mum was going to be okay. So it was, it was fine.

Kellie Curtain [00:14:31] Janine, you have children, and initially when you were diagnosed, you chose to tell your children that you had breast cancer but didn't go into it. And was that because you're a single parent? Was that wanting to protect them a little bit whilst telling them the truth?

Janine Keyhoe [00:14:49] Look, it was a bit of both. In hindsight, I probably would have done it a little bit differently because they did sort of go to find out themselves, they were at that age. They were 14 and 11. And it was really interesting because my children had very different takes on it. My daughter really didn't want anyone at school to know about it. She for some reason, she just didn't want to be treated any differently, whereas my son really reached out to his friends for support and sort of dealt with it that way. So they really did handle it quite differently together. But, yes, you know, unfortunately, with the triple negative, sometimes when you do research it online, it does come up with a lot of negative information. And I just didn't want them reading that at the time. And I also I just didn't want them to know too much because I think sometimes too much information for kids can be a little bit overwhelming at their age. And my daughter really did carry a lot of the stress of it. She did take on a little bit of a carer's role for me, which was quite difficult to watch. And I think sometimes you forget that the kids need as much support as you do and particularly single mothers. I think, you know, I tried to carry on with life as per normal and not change too much for them. But the reality is they're watching you change because I lost all my hair, I didn't feel well on certain days, so I wish I'd probably just been a little bit more honest with them at the start.

Kellie Curtain [00:16:34] And do you think maybe when you say honest, perhaps, do you mean showing your vulnerability?

Janine Keyhoe [00:16:40] Correct, yes. So which they eventually did see anyway, because, look, the reality is I wasn't 100 per cent strong the whole time and there were moments of weakness where I just, you know, it was pretty emotional,.

Kath Elliott [00:16:54] But maybe that's the message too, is it to be kind to yourself?

Janine Keyhoe [00:16:58] 100 per cent.

Kellie Curtain [00:17:01] It's okay to be emotional, to not be 100 per cent? How can you be 100 per cent?

Janine Keyhoe [00:17:04] Well, that's it. And it also showed them that there's nothing wrong with showing your vulnerability and that if you are scared sometimes, you know, everyone throughout your whole life is going to be challenged with certain scenarios where you may be frightened and there's nothing to be ashamed about that. So ultimately, in the end, it's brought us a lot closer. I think, as Kathy said, they're a lot more resilient. And the best part is they also now are very particular about their health, which in young kids, I think it's it's a good thing. So there are some positives from the negative.

Kellie Curtain [00:17:40] What about during your active treatment? What was the... Is there anything you wish you'd known? What did you rely on for support and what were you pleased that you did? And perhaps if you had your time again, wouldn't?

Kath Elliott [00:18:00] I think definitely for me, because I was in 15 months of active treatment, which is quite a lot. So for me, I wish that, and I took this on board a bit further down the track, was to really... Rather than looking at it as a whole kind of 15 months, breaking it down into smaller milestones was really really important for me. So I broke it down, so I had, you know, my four AC chemos, you know, I celebrated after that. Then I had my, you know, 12 Taxols, I celebrated after that. And then chemo was done. So I didn't look too far ahead because as soon as I started looking too far ahead and not being present in what I was going through, that's when I started to panic and think, oh my gosh, how am I going to get through this? Will I be okay? It's such a long time. I'm not going to be able to do this. But what I focused on was just that week. And then I would always, at the end of chemo on the Thursday, have a little mini celebration with myself and tick it off. I drew up like a table that I had on the fridge and it was, I had stars, and ticked it off and it was like high five. I've got through.

Kellie Curtain [00:19:26] And it's like you do with your kids isn't it, little star charts!

Kath Elliott [00:19:29] Totally. And that was really amazing. And look for me. I think for me my approach to chemo was I wanted to and I was lucky that I went through chemo before COVID, I wanted people with me. So I encouraged my friends and family to support me and come and sit with me and energetically, you know, come in in beautiful colours. And that for me made the experience, I guess, just more doable. Yeah. Some people just want to do it on their own and I completely get that as well.

Kellie Curtain [00:20:12] It comes back to doing it your way, isn't it?

Kath Elliott [00:20:15] Exactly. Doing it your way. And that is such an important point because everyone's way is different. And it's really I think as supporters and carers, it's just it's another reminder that just because someone else has done it one way doesn't mean that the person you're supporting is going to do it that way as well. And it's really important to check in and just say is, is this working for you? How can I support you? Or you talk to their partner or a good friend of theirs as well. Because I think some people just bowl in and think they're doing all the right things, like a meal train or something. For example, I didn't want a meal train, so I pretty much put a stop to that. It just didn't make me feel good.

Kellie Curtain [00:21:02] Which is really interesting, but a real reminder that you can still support in other ways, but it doesn't have to be a stock standard for everyone. And as you mentioned, you had your treatment just prior to COVID, whereas Janine, you were right in the middle of it.

Janine Keyhoe [00:21:19] I was. Yes.

Kellie Curtain [00:21:20] And therefore, you had to adapt, didn't you?

Janine Keyhoe [00:21:24] Yes. So I was different to Kath because obviously during COVID, I was actually lucky that my dad could come with me because it was a stage where not even carers were allowed to come in. So, look, it was a completely different experience. And it does come back to, you know, not one hat fits all, because my experience was very much just me and my dad that had to be someone in my bubble who I was saying that was allowed to come with me. So he was really my rock during that whole time. And also the nurses at Peter Mac, who were just absolutely beautiful, they were the people who were helping me get through it. So it was a little bit isolating. But at the same time, you know, I guess for me, I'm quite a private person. So it was also a nice thing for my dad and I to go through together as a team and quite a unique experience. And you know what the sad thing was? Dad actually ended up saying to me, I look forward to chemo days because I get out of the house.

Janine Keyhoe [00:22:25] So there's an upside to everything isn't there! Isn't it funny... what's the lesson there? Is it that... you don't want to sound too Pollyanna, but is there always a positive to something because you wouldn't have chosen to have gone through that during COVID?

Janine Keyhoe [00:22:40] Correct.

Kellie Curtain [00:22:42] There's lots of things you wouldn't have chosen. So where's... what's the lesson there? When things again are out of your control, how do you get through it?

Janine Keyhoe [00:22:52] Yeah, well, look, the lesson there was and you're spot on, like when things are out of control, you just got to give in to it, though, to be really honest and go with it. And it's like Kath said every day, you know, we never knew what was happening, particularly during COVID, with the lockdown. So and week to week when I was having my chemo, it was, are you going to be allowed to come with me or not? And I could have built up a lot of anxiety around that. But I just sort of gave in to it and thought, you've just got to go with it. Accept what will happen, will happen and we will get through it one day at a time.

Kellie Curtain [00:23:26] What are the lessons learnt in the different health system navigation? Kath, you went private, Janine you were public.

Kath Elliott [00:23:37] Yeah, look, I think from my perspective, going through the private system for me was a really positive experience overall. The only, I guess the only thing for me was I had a more holistic approach to my breast cancer. So it was really important when you're navigating kind of, I guess, the medical system, that I had my needs, I guess, expressed as well. Which again, I did feel, I felt supported, which was fantastic. I worked with a wonderful oncology naturopath who I shared all the information with my oncologist. So that was really good. And I look, I always felt very supported by my medical team. It was still a little confusing because I started off with the surgeon then I moved on to the oncologist. Then there was the radiation therapist. So there's, and then I also had my GP, so there was a number of doctors who were kind of in my I guess, my care team. And sometimes it's hard to know who's the one person I go to for this information. And the answer is sometimes you don't know. And I guess if there was one thing I would have really loved in that experience, it was one person who was my health care advocate who was there, who I could talk to about the issues that I had, not a Breast Care Nurse, someone who was like, okay, this is how we navigate this. Because I think, you know, my oncologist knew everything that we needed to do for my chemo. But then radiation was still six months away. It was really hard to know exactly where to go with certain questions. So I think there's a missing, there is still a missing piece there.

Kellie Curtain [00:25:36] Did any of the BCNA services, whether it was the My Journey online tool or the community group or our Helpline, did any of that help fill in the gaps?

Kath Elliott [00:25:47] Yeah, look, definitely the My Journey tool did when I did my own research. And I think that was really useful. But I think when you navigating the system and there's actually in my case, I didn't feel like I had a lot of time initially when I was starting treatment. You do kind of just almost get pushed off the ledge, which is which is okay. Again, I had to accept it too and just go, OK, I surrender to the process and see what happens. And you do learn a lot along the way and through the experience as well, which is why it's so important that we can talk after we've been through the experience, because I learnt so much from other people who had been through their experience as well.

Kellie Curtain [00:26:32] Janine, I remember you saying to me that prior to your diagnosis, you didn't even know there were many types of breast cancer.

Kellie Curtain [00:26:39] No, so I've learnt just so much. I had just thought, when you get breast cancer, there's just one type and you have chemo and you're fine, so it's been you know, it's embarrassing being that naive, but it's been a real eye opener. And I think I was so grateful to Kath because I would ring Kath and say, you know, I've got to go to this appointment. Why am I going to this appointment? What's going to happen? Because as she said at the start, there are just so many you go through. And it's interesting that you talk to having sort of an advocate, because I guess my Breast Care Nurse, Monique, who was my absolute rock. And look, to be really honest, the public system is pretty under-resourced and she's under a lot of pressure. But she never made you feel that you weren't really important and how you're feeling wasn't important. So she was my rock because, you know, once you've seen your oncologist or your surgeon in the public system, it's not like I can ring them back and say, listen, I've forgotten something and I want to ask you a question. You don't have that access, which I think Kath, you had more access to your doctors, if you needed?

Kath Elliott [00:27:45] Yes, definitely. My oncologist was amazing. Like, how could you text her at eleven o'clock at night and she would come back to me or yeah. So I do feel lucky from that perspective that there was always a direct line of communication. I broke out in a rash one night from chemo and I was worried and she came back to me literally five minutes later, which is pretty amazing. They're not all that responsive.

Janine Keyhoe [00:28:10] I had a really bad reaction to Taxol and I got really painful legs and I was in excruciating pain and unfortunately, I had it on Thursday and this happened on a Friday, which meant that I was going to have to put up with it for the whole weekend. And luckily I rang the Breast Care Nurse, I said, you know, I mean, quite a lot of pain here. And she was on it straight away. She got some medication sent out for me, and I was just so grateful because she I said, well, can I speak to the oncologist? And she said, no, not until next week. So very, very lucky to have them.

Kellie Curtain [00:28:48] I think it's worth noting that even if you're not assigned to a Breast Care Nurse, you should ask for one.

Janine Keyhoe [00:28:53] Yes, absolutely.

Kellie Curtain [00:28:54] So unfortunately, there's always a few gaps in the system. Like you said, it's very busy and sometimes it can just get overlooked. So it's really important to ask for a Breast Care Nurse.

Janine Keyhoe [00:29:06] Absolutely and the resources on BCNA were really good. So I would always go on and research stuff if I wasn't aware of exactly what was going on and I couldn't ask those questions. It was a really good research resource to actually look at.

Ad [00:29:20] Want to connect with other people who understand what you're going through at any time of the day or night? BCNA's Online Network is available for people at different stages of their breast cancer journey, as well as family and friends. For more information, visit BCNA dot org dot AU forward slash online network.

Kellie Curtain [00:29:42] I wonder whether another reflection is that don't try and tough something out if you're in pain, if you are feeling sick. Women notoriously Tend to power through. You know, you're right. It'll be all right. Or there are other people before me, even when you are sick. You had the foresight to ring your Breast Care Nurse.

Janine Keyhoe [00:30:04] Yes, because I'd actually also spoken to Kath about it, said, oh, you know, I've got my legs are really I'm in a lot of pain. Did you have that? And you know, Kath's experience was no, she was fine. So, again, no one's experience is the same. And, you know, it was good to know that I had someone that I could call on.

Kellie Curtain [00:30:23] What about when you finished treatment? We sort of call it handing back the vacuum cleaner, because the medical appointments, which are really intense and even maybe in your case, Janine, after a reconstruction, there's a lot of rehab and getting back to, well, your new normal. So we speak about it, but there must be a bit of loss too, you're grieving your old self. Perhaps you're not back at work and the world very much moves on. And were you changed Kath?

Kath Elliott [00:31:01] Definitely. Definitely. Yeah, absolutely. Yeah. I even I was thinking about this this morning. It's... the grief isn't linear. I think some days you do feel a bit back to normal and other days you still feel a lot of grief. For me, my life has changed significantly. Before having breast cancer, I was working in, you know, a busy PR job and now I'm not working in that job. I chose to resign and I've chosen to start, you know, a whole new career and a couple of different businesses. But I think the biggest thing for me that's changed is, you know, my relationship with myself, but also some of the relationships around me as well. I think you look at life quite differently. You have a new perspective on living, because I think sometimes you can take what that is for granted, and I really don't now. So it's this presence in life that you really bring to the table. And sometimes people want you to move on from breast cancer. They just you know, Kath, she looks so healthy, life's back to normal. But part of me is like, no, but I've been through this experience. It's actually part of who I am. And I don't want to forget about it. I really don't. I want it to... I still want people to ask me how I am or how I'm feeling. And sometimes they just don't. And there are people who were there for you and sometimes there are people who you expect to be there for you and they're just not. And you've got to deal with that.

Kellie Curtain [00:32:49] So that's a real reflection and learning, isn't it, that you change and when you change, therefore, probably so do the people that you need in your life?

Kath Elliott [00:33:01] Absolutely. Absolutely. And I think sometimes it's... for me, it's just a reminder, again, that these experiences, those traumatic experiences and it doesn't matter what they are, that so many things in life do change and it's constantly changing. And even though I had cancer two years ago, there's still so many changes that are opening up and I can see them still. And it's hard even looking back and wondering, you know what, who was that person two years ago? I do feel very different.

Kellie Curtain [00:33:42] Janine, did you feel anger at all? You went from an early diagnosis of breast cancer to very quickly progressing to, as we mentioned, the double mastectomy, the reconstruction.

Janine Keyhoe [00:33:57] Yeah.

Kellie Curtain [00:33:58] Were you angry at all and did you feel a little bit sort of guilty that you were feeling angry because well, hell, you're alive and you're coming out the other side? It must be. Was it a rollercoaster?

Janine Keyhoe [00:34:11] It was an absolute rollercoaster. And it was full of you know... I had a lot of shock because, you know, mentally, I prepared for the original plan. And when that all changed and it also made the whole treatment quite confronting because it wasn't, having a double mastectomy just wasn't on the cards. So I've now, coming out the other side of that you know, obviously I've got my scars and I'm reminded daily of what I've been through. So I think sometimes when you're looking at that every day, you do have a reminder of what you've been through. But also, you know, initially I was probably angry because I thought, you know, you told me something else. This wasn't on the plan. How could have this happened, why's this happening, you know, which I think most women, when you go through this, you kind of think that to yourself. A bit of why me happened, but why not me as well, you know? So, yes, anger, but now very grateful. I'm grateful because so far I've recovered well and I've changed my life for the better I believe. I eliminate as much stress as possible. I've got some beautiful, close, tight friendships of people who get it and understand it. And as Kath said, once you - and most women out there who'll probably listen to this - once she go through it, you can't forget it. It will always be with you and it will change you. And you just, again, got to look for the positives in that. And that's what I try to do. You know, my breasts now are quite perky. So you've gotta be grateful about that.

Kellie Curtain [00:36:01] There's that great silver lining. But do you think if you were talking to, you know, the version of yourself from 18 months ago or 12 months ago, actually, would you say, you know, it's OK to flip flop between 100 per cent anger, gratitude fear, comfort?

Janine Keyhoe [00:36:25] Yes, I think so.

Kath Elliott [00:36:27] Totally. Yeah. And I think yeah. It's funny that you mentioned anger because I actually felt really angry last week, which was bizarre because I haven't felt that for a while. But I was just, I could feel something was going on and I thought I'm actually feeling angry. And it was just the fact that, ah, yeah, I think I was thinking back to two years ago and just thinking about how life had changed so much. And I just realised I still have stuff to process and anger's okay. It's fine to be angry. It's actually good to be angry. It's good to acknowledge that you are angry and then the emotion, you move through it and something else comes up. I think one of the feelings I felt initially, though, after finishing active treatment was just this absolute sense of relief. I guess I just relief. But it wasn't an elation. It was just a numb relief. Just thank goodness I've looked, this was the day that I'd sort of marked in my diary. And then I'd got there and I was like, oh, but then everyone else had thought that I'd finished treatment at chemo, you know what I mean? Because COVID hit and everyone, I'd actually got the all clear after chemo. So everyone just thinks you're okay. And then so you sort of, I was navigating all of that, most of that really on my own, that sort of last part. So you're really just giving yourself the high fives.

Janine Keyhoe [00:38:00] So true, people just expect I think once you finish your treatment and even the surgery, they're like, okay, so you're all better now and everyone wants you to move on and everything to go back to normal. But your normal is probably a little bit different now. And I think that can really be challenging to a lot of people who are around you. And because I have had a lot of people say just move on now. And I think that you can't tell someone when to do that. It's something you've got to come to terms with yourself. And that may take a very long time. And particularly, you know, I think for me, with my type of cancer, you've got a period where you have to be very vigilant with yourself, really know your body, and you're very, very aware of what's going on in your body. So it's always with you. So I was saying to Kath earlier today, you know, if I get a new ache and pain, you instantly go too, well, what's that?

Kellie Curtain [00:39:00] Fear of recurrence?

Janine Keyhoe [00:39:01] Yeah, and that doesn't go away. And as much as everyone wants us to move on for me and again, my type of cancer, it's always simmering underneath at the moment. So I try not to focus on that and I try to move forward with it. But that's my new normal.

Kellie Curtain [00:39:21] Well, you've both made significant changes since your treatment, including change of careers and Janine, you're not as anxious. You're focusing more on what matters. So I guess simplifying things and you mentioned about the old you, you can't help but change a little bit. So what would the reflection be? Or maybe some advice to others who are on the cusp of either treatment or are just coming out of the other side? Is it, you can't hang onto the old you because you're just not. Or can you?

Kath Elliott [00:40:04] I think that's really it's kind of yes and no. You can hang onto the old you in that there is still a part of you that is the old you. But you change and there is a grief. And I would just say that it's complicated, but you just got to let go and I guess surrender to what that experience is. The one thing I can say is that my experience with breast cancer has more than anything, I guess, been a positive experience because I've chosen to take the positives out of the experience, which is I realised that there was so much love around me and that the important things in life are really the human connections that you have, whether it's with your friends, your family, your nurses, your doctors, all of that, all of that connection that comes through that experience is so, so important. And you kind of realise that a lot of the other stuff that you've been worrying about as the old you doesn't really mean anything. And so I think for me, that is the thing that I took out of out of it most. And what I would say, if you've just been diagnosed or just starting treatment, focus on the people who you really love and care about, and they will give you a collective hug, I guess. And that's for me, where the beautiful energy came from. That collective hug

Janine Keyhoe [00:41:43] It's so beautiful Kath, how can I follow that? But I probably second, you know, most of what Kath just said, I think you know how I've sort of changed from the experience. As you said, I just really appreciate those who are close to me. My kids love that I probably don't scream as much now. So that's a positive for the whole household, really. But really, you know, I just I'm so grateful, I wake up feeling a lot clearer and just get the most out of everything because everything can change very quickly. So, you know, I look around me and I appreciate every single thing that I've got, and that's my family and my beautiful friends.

Kellie Curtain [00:42:29] Do you miss the old you?

Janine Keyhoe [00:42:30] No, because I think I'm a better person now. I think sometimes these things happen and it gives you a bit of a reality check. And I used to take a lot of things for granted and didn't appreciate the goodness and probably tended to lean towards more negative thoughts and now being a lot more positive and try and give that energy out and try and give back. I think, you know, I wish sometimes at the start of my journey that I you know, I heard all this previously, and that just know that you're going to be OK.

Kellie Curtain [00:43:13] Well, thank you. You both have a beautiful energy. So I'm very grateful. Thank you both for sharing your stories today on Upfront. This podcast was brought to you with thanks to Cancer Australia. My Journey has a range of information and support tailored to your specific needs at all stages of your breast cancer journey, including early breast cancer, DCIS, metastatic breast cancer and survivorship. BCNA's Online Network is also an online peer to peer support community, where you can talk to other people about your breast cancer experience. To sign up to access the My Journey online tool, visit My Journey dot org dot AU. I'm Kellie Curtain. It's good to be Upfront with you.