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Let’s be Upfront about managing fatigue related to breast cancer treatments. Fatigue is a common side effect of treatments related to breast cancer, particular chemotherapy and radiotherapy. Fatigue doesn’t always go away with rest and sleep and may last for months after treatment is finished, and for people with metastatic breast cancer, lifelong treatment means fatigue associated with treatments can be ongoing.
Joining us for this episode of Upfront are Kathy Wells, Kathryn Wallace and Rina Portet. Kathy is a long-time BCNA staff member who was diagnosed with breast cancer at the end of January 2021. At the time of recording, Kathy has had five months of chemotherapy treatment followed by breast conserving surgery, with radiotherapy still to come. Rina was diagnosed with metastatic breast cancer in 2014 when she was pregnant with her 3rd child, who is now 6.5 years old. Rina had treatment while pregnant and has continued treatment since.
Kathryn Wallace is an experienced Specialist Breast Care Nurse having spent over 25 years in a variety of settings supporting people affected by breast cancer diagnosis. Her roles have been diverse and comprehensive, providing support and education in acute clinical settings, private practice, non-for-profit organisations and working closely with GPs to improve links between primary health care providers and clinical specialists.
We hear about Kathy’s and Rina’s personal experience with fatigue associated with breast cancer treatment, and helpful advice and strategies they’ve both used on their journey to help manage their fatigue from their differing experiences. We also learn about the key causes of fatigue, the differences in breast cancer treatments can contribute to fatigue and what you can speak about with your treatment team to identify the right treatment to help you manage your own 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.
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Kellie Curtain: Let's be upfront about fatigue and breast cancer. Fatigue is a term used to describe persistent tiredness and exhaustion and is one of the most common side effects of having breast cancer. Fatigue can have a physical and emotional impact, and it can be overwhelming and debilitating. The other thing about fatigue is it affects everyone differently and at different stages. And sometimes rest helps, other times, it doesn't. So how do you manage it?
Today on Upfront we're talking to two women with different experiences of fatigue. Kathy Wells is 58 years old and was diagnosed with early breast cancer in 2021. She's had surgery and chemotherapy. Rina Portet is 43 years of age and was diagnosed with metastatic breast cancer in 2014. Also joining us is specialist breast care nurse with more than 25 years' experience, Kathryn Wallace. A reminder that this episode of Upfront about breast cancer is an unscripted conversation with our guests. The topics discussed are not intended to apply for medical advice, nor necessarily represent the full spectrum of experience or clinical options.
So please exercise self-care when listening as the content may be triggering or upsetting for some.
Kathryn, if I could start with you. Can you explain to us what is breast cancer related fatigue, and what causes it?
Kathryn Wallace: OK, thanks, Kellie. Thanks for the invitation to be a part of this very important conversation. You know, breast cancer in fact, any cancer, one of the major side effects is fatigue - whether it be mental fatigue or physical fatigue. I think it's just...it's often not relieved by rest or sleep. It can severely affect an individual's quality of life. I often refer to it with women as they're running a biological marathon. And we use the term 'journey' and it is a journey, but sometimes that journey can turn into a very long marathon. And, you know, it's probably the most, as I said, the most common side effect. It can be caused by medication. It can cause both some physiological issues around anaemia, suppressed immune systems, maybe insomnia due to menopause symptoms, hot flushes, anxiety, chemo fog, muscle fatigue, and it can be chronic. It's one of those things that women say that they've just hit the wall, and they find it very difficult to deal with.
Kellie Curtain: Kathy, your diagnosis is fairly recent. Can you describe the fatigue you've experienced related to the treatment you've had?
Kathy Wells: Yeah. So I've had five months of chemotherapy treatment, and that's where I've experienced my fatigue. I'm still to have radiotherapy, so that's all ahead of me. The fatigue I have was really quite overwhelming. I've been working at BCNA for a long time now, and I've listened to women talk about fatigue. And I've had children, and I've worked full time and been a single mum. So I know the fatigue of lack of sleep and having a busy life. But the fatigue with cancer is completely different. It's completely overwhelming. It makes it really hard to get out of bed - some mornings, you know, I would find, you know, I could struggle out of bed, have a shower, and then I'd have to have a rest before I could dry myself off and get dressed. And I'd need another rest before I could get down the stairs to think about breakfast. So, it really is overwhelming. It's physical fatigue as well as a mental fatigue.
Kellie Curtain: Did it catch you by surprise, somewhat? I mean, given that you've been working at BCNA for 15 years, you've had a lot of firsthand relations with many women, and their different experiences, so you're not a stranger to the area by any means. Did the actual fatigue that you felt catch you by surprise? Because the other thing, many people talk about fatigue after radiation as opposed to chemo. So it was almost like you were possibly preparing for the radiation fatigue, not so much the chemo.
Kathy Wells: Oh, well, that's something to look forward to, isn't it? (LAUGHS) It did catch me by surprise, yes. Although I have to say I have an underlying issue with some anaemia. So, we'd been investigating that prior to my breast cancer diagnosis and hadn't come to a cause for that. So, that could well have contributed to it. And I actually had two blood transfusions during my chemotherapy treatment because of the anaemia. So that I'm sure contributed. But yeah, it certainly...yeah, it's very hard to explain. I've tried to explain to people in the office the difference between cancer fatigue and fatigue that's related to everyday life and living a busy life. And they're just completely different. I can sleep a good, solid eight hours or ten hours. You know, my sleep has been good, but I still can hardly, you know, can hardly function the next morning.
Kellie Curtain: Rina, you have metastatic breast cancer, which means the cancer has spread, and you've had it for a while now. What's your experience of fatigue?
Rina: So when I was diagnosed, back in 2014, I was pregnant with my third child. I already had a one-year-old and a three-year-old. So I also knew what fatigue or what's being exhausted what that meant. I would say, because it was such a busy time of my life, I had a really good support network around me that sort of closed in and took care of everything in my life when it happened and for the first six, 12 months, meaning that my parents came up from Denmark, lived with us, took care of the kids. So it really...I really stepped out of my life in that sense. I had chemotherapy for eight months at the time, and of course, that caused fatigue. But I think...I was so focused on my fight at that time, so I could also focus on getting my rest. I had radiotherapy after that. And as you said, Kellie, that's a fatigue where it sort of comes up to months afterwards, and that really hits you like a hammer, as you describe it, Kathy. I always have a picture in my head of a sausage. Like you can squeeze a sausage and squeeze it all flexed.
And under normal circumstances in my life, I would always have a little bit more energy to give things. But with this cancer fatigue and the radiation fatigue, it's just flat, and there's nothing else to squeeze out of it.
Kellie Curtain: So it's not a mental thing to say, come on, you can actually do this, it's bigger than that.
Rina: Yes. All my life, I've been a very high achiever. I've always believed that I could do whatever I wanted to. And it's not just about pushing through, I've done sport on a very high level. So pain is not a problem. It's actually a way of getting to success. But this is something where you just can't overcome it. It's just flat. I mean, I've been sitting on the couch looking at my legs and just thinking, I can't actually get up from the couch right now.
Kellie Curtain: Kathryn, that must be, that sounds like it in a nutshell, why is that? Why can't you actually find that little bit extra in the tank?
Kathryn Wallace: Yeah, look, it's a really good question. And most women I meet, you know, are doers, you know? Most women are doers. They like to be physically active. There's not many couch potatoes out there, you know, and a diagnosis can strike at any time. And I think how Rina and Kathy have explained it is perfect. It's like in under any normal circumstances, a good night's sleep can often relieve the...if you're generally tired. But this is not just being tired. This is a different experience. And whilst I haven't experienced that personally, I've certainly... you know, the frustration I think, for women. And it can be caused by things like, as Kathy's mentioned, anaemia. It might be because your immune system's suppressed during your treatments. It could be muscle fatigue. It could be...for some women with bone metastases, it could be pain that also affects. And anyone that's dealt with chronic pain, regardless of whether it's been cancer or not, knows how tiring that can be. So I think it's a combination of all of those things.
And I think it's important for women to...well, when I say important, I think more or less it's acknowledging, and that's what I do. I say, "look, you're not alone with this. This is extremely common." And you've got a young woman who was, you know, been very sporty or any older woman that's been very active, and then they just find they're really frustrated. They just cannot find the energy that they want to be able to do the simplest of things, whether it be, as Kathy's mentioned, getting out of bed and having a shower. A lot of women say that is just the most exhausting thing. And after the shower, it's almost like they're whole morning's gone before they can actually do anything. And sometimes it might be working out for yourself, when is your best time of day? So maybe having the shower before you go to bed at night might be a better idea than in the morning. It's kind of working out where your energy levels are, perhaps, at their best.
Kellie Curtain: Does it follow a template, is there any sort of standard fatigue, if you like? Or like I said to Kathy, so many women experience the cumulative effects of radiation, and they're finished their treatment and all of a sudden they fall like a tonne of bricks 'cause it's just caught up with them. Kathy's experience is the chemo, is... are there some flags that we can look out for that are almost certain to cause you fatigue?
Kathryn Wallace: Look, I think where you're coming in at a cancer diagnosis can make a big difference. If you're carrying a lot of extra comorbidities on top of your breast cancer diagnosis, that means you are going to probably start on the back foot. We know that exercise and activity can counteract fatigue. I have a bit of a mantra I use for women. I say, "look, if you feel a bit tired or if you feel tired and "you can't really be bothered going for that walk, "definitely go for that walk. "But if you've hit the wall, then rest." And it's really listening to your body. I think the flags might be, you know... I know for women having Taxol in particular, by the end of their Taxol treatment, there is just that feeling of like I just need this to be over. This seems to just be going on forever. So there can be that feeling of... You know, setting realistic goals is really important, I think, tuning in to what you can do and what you can't do. The flags might be changing treatments from AC through to Taxol.
Some of those oral chemotherapies can be quite difficult as well. Dealing with general side effects, and what level of support people have. If you're dealing with three young children, it's quite different to someone who's perhaps retired and they're empty nesters, you know? I always say to women, "always accept help. It's a win-win" because some people just don't know what to say. So if they can do something for you, it's helping them and it's helping you. And the three C's for young mums is the cooking, the cleaning and the childcare. So, that can be really helpful. So, a lot of women find it difficult to accept help.
Kellie Curtain: I think most women regardless find it very difficult to help. So, Kathy, you have adult children, but you live alone. So that presents a whole different set of challenges. And you live in a two-storey home. Take us through some of the challenges that you faced and how you had to rethink what you did and when you did it.
Kathy Wells: Well, to start with, I had to plan at the beginning of the day to take downstairs everything I thought I was going to need during the day because, you know, I had to have a think about, do I really want to go up and down those stairs again? In terms of my children, yes, they don't live at home. They're in their 20s. But they were a fantastic support for me. So each chemo session, my daughter would come and stay with me the night before and take me and drop me off to chemo and then pick me up afterwards. Because, of course, during this COVID period you can't have anybody in take... you can't take anybody to your appointments with you, which is another issue altogether. But she would take me and pick me up afterwards and then stay for the next few nights and just keep an eye on me. So, yeah. So they were a great support. I relied on them. I relied on... oh, I'll try not to get emotional, but a few, close good friends who live nearby who are there, you know, at the end of the phone and will drop everything to come and support me.
So they've been fantastic. And, you know, I wouldn't have got through it all really without my two kids and without those few close friends who really have supported me. And then they've been...as Kathryn was saying, you know, we keep hearing, you know, when people offer help, accept it. Sometimes it's hard to know, you know, people say what can I do, and it's really hard to know and to actually give them a task to do. But sometimes just having somebody to talk to, somebody on the phone, a phone call was good. And then, you know, the people to do a bit of shopping and help out, somebody do my washing and hang my washing out for me at some stage. So, all those little things were really helpful.
Kellie Curtain: Do you find that it's better to lean into the fatigue, so to speak? I know you are saying that you'd have a shower, which is in normal day, a fairly simple process, but by the time you dried yourself, you actually had to lie down on the bed and rest.
Kathy Wells: Yep. So there were days I just had to accept I couldn't, you know... I can't do anything or I can't do anything this morning. After my first six weeks of chemo, once I started the Taxol, I started to get back into doing some work, so all work from home. So there were days I'd take the laptop up and sit in bed and do a bit of work. There were days I just sent an email and said, I'm actually not up to doing any work today - my brain's not working, let alone my body. So I was really lucky with BCNA that they were so flexible. And, you know, I appreciate that I'm in a, you know, a special situation here with my work where I can work if I feel up to it and not if I don't. So, yeah. So I just really had to give in to how I was feeling. You know, everybody says, you know, put yourself first, look after yourself, listen to your body. They all sort of sound like platitudes, but it's actually really so true when you've got breast cancer. You do...you have to listen to your body. And, you know, if you're not up to doing anything, just accept that.
And really, right at the beginning, I just accepted that 2021 is going to be a write-off for me this year. I'm going to...it's my year for treatment. I'm giving it over to breast cancer. And hopefully by Christmas, I'll be back on my feet and back to a more normal life. But I really started with that outlook that I've just got to deal with this as best I can. Take it day by day. Don't look too far ahead and just manage. you know, what comes up each day.
Kathryn Wallace: I think, actually, can I just interrupt there, Kathy? That's a really good point. Often I say to women, regardless of what type of treatment, what length of treatment, we know there's lots of different types of breast cancers and treatments, you know, put aside six to 12 months. You know, kind of set that in your mind that, look, this is an unchartered waters for the next six to 12 months, I don't know how I'm going to feel. And then give yourself the same length of time for kind of a recovery phase. There are different phases. A lot of women say when they're first diagnosed, they're exhausted simply because of the information overload. You know, for many women, it's like a new language (UNKNOWN). And then they've got family and friends constantly asking them questions. And it's responding to other people's responses to your diagnosis, which can be exhausting. And I'm sure Rina's felt that too. And you've got family long distances away, which makes it even more challenging, I'm sure.
Kellie Curtain: And Rina, of course, yours isn't a six to 12 months experience. Yours has been going on for six years and will, for the rest of your life. How do you cope with that and make it part of your life? Because metastatic breast cancer is part of your life and will be. So what do you do to, a, get your head around it, and, b, make life possible?
Rina: So it's a constant learning curve I... (AUDIO SKIPS) ..say. For me, it has been really important to make my priorities of what do I spend my energy on, because with three young kids, they are my highest priority, of course. So there are things that I've said I can't cook them... Everything is not homemade in our house anymore because that's where I can save some energy. I would also say, like Kathy, when people ask, because everyone is so lovely, of course, friends and family, what can I do, just anything? I have like a standard answer because it's always hard to come up with something on the spot and it's always, "A meal would be lovely." And that's something everyone can do. And it is an enormous help. It just saves, yes, the energy of going shopping and planning and cooking while you're doing the rest of your life. Many little things in my life I've changed. You know, we do the shopping online, for example. We get our groceries delivered once a week now since my diagnosis. So for me, it has been important to carve out a time of the day where I'm not accessible to anyone, family or phone calls or anything, and that's my rest time.
So to sort of be on top of the fatigue that I would otherwise experience later in the day, late afternoon. I'll go to my bedroom between 1:00 and 3:00 and make a pot of tea, healthy snacks, read a book, or just lie down and listen to an audiobook or...yeah, read a book. So to really be ahead of, like on the front foot with the fatigue.
Kellie Curtain: I think that's a really good point. Kathryn, everybody's experience is different, but with Reina, if she didn't get ahead of it, it was going to come back and bite her, so to speak. Is that a good way to approach to try and be proactive in conserving your energy, and not getting to that point of being so tired that you can't move, actually take the break before?
Kathryn Wallace: Yeah. It's a bit like what I was saying before, the difference between sort of, you know, I'm tired and can't be bothered to...you know, I've hit the wall. And I think it's also about identifying what works for you, which time of the day is generally better for you? And that might change on a weekly basis. It could change on a daily basis. But I think what Rina's identified is that that space in time in the afternoon allows her that very important 'me' time where she's not at, I guess, you know, with, as I said, the young children and understanding that that's her time for regeneration, rejuvenation. Some women use that time to do some mindfulness or some gentle exercise or just to rest, or as Rina's said, audiobooks - whatever it is, I think, that can fill your cup or at least half fill your cup. And it's having the realistic expectations of what you can and can't do. I know I've said that a few times, but I think for many women it is frustrating, and having to readjust just their daily activities and the way they do things.
I mean, diet is important, yes. Exercise is really important. You probably get lots of well-meaning friends and family who say what you should be eating and what sort of exercise you should be doing. And there's a lot of 'shoulds' out there and very well-meaning family members and friends giving you great ideas about how you should change your diet. But look, for me, I think what works mostly for women is a sense of routine. Trying to go to bed at the same time, you know, at night, and just trying to have some form of routine - whether it be exercising, whether it's a walk for 30 minutes, where there's some Pilates or yoga. There's lots of exercise programs out there that really show some strong evidence about how that relieves fatigue. And for some women, look, that may not be possible until they've finished their active treatment phase.
Kellie Curtain: Is something better than nothing? Doing exercise is often hailed as the magic bullet that everybody's looking for. But time and time again, we see evidence that it has so many benefits, both as part of a physical recovery or rejuvenation as well as emotional.
Kathryn Wallace: Yes, for sure. For sure. I mean, exercise physiologists are going gangbusters out there at the moment. You know, since the two to years back, so much evidence has come back in, particularly in the arena of breast cancer and in particular some of those hormone positive, oestrogen-progesterone positive breast cancers. We know the body puts on a lot of tummy fat as you go through menopause. And of course, menopause is a whole different subject. But I mean, if you're talking insomnia, lack of sleep, that could be due to night sweats, hot flushes. You know, going through menopause, most women who were diagnosed with breast cancer either go through a chemically induced menopause or they're going through it anyway. So it's trying to deal with that sort of, yeah, those sort of things as well. Yeah. So I think it's just about what suits. It's not sort of...not prescribed, although we know that exercise and keeping fit and active throughout your treatment often results in less side effects and more energy.
I don't know, Kathy. Have you felt that at all?
Kathy Wells: Well, yes, I have actually. I was just going to jump in because I think my medical oncologist really did prescribe exercise for me at my first meeting, so before I'd even started my chemo, she said to me... she introduced me to the exercise physiologist who I went off to see, and I had a program. So I've been trying to go weekly into their rooms or on Zoom when we're in lockdown. And I've had a program which certainly has made me feel better. And especially, I'm really finding now that I'm sort of between my surgery and radiotherapy that I'm benefiting. When I was having my chemo, some days, you know, sometimes it was just too hard to do very much. But the EP was very good and flexible with the program. So, I started off with some aerobic sort of exercise. But when I got too fatigued to do that, we switched it to just stretching, gentle stretching, and just a bit of movement. So, you know, it always incorporated a half hour walk and then some gentle stretching and a bit of movement. So, yeah, I've found exercise... you know, a daily walk out, especially if it's sunny, if it's a beautiful sunny day, that really does a lot for your mood.
And then that, you know, doing a bit of exercise at home or at the EP clinic has been terrific.
Kellie Curtain: What about you, Rina?
Rina: Yes, I have really benefited as well from seeing an exercise physiologist. I personally have always thought that if you got a strong body, then you're more you've got more energy to do more, right? We all know that. And I can't recommend it highly enough to see an exercise physiologist and get that tailored program for you, because they will look at where are your tumours, where are your pains? For me, they said in bones and spine, and then...and my hips. So really build up strong muscles around that to support it, and also to minimise pain - like that's another great side effect from strengthening your body. (CROSSTALK)
Kathy Wells: Sorry, I'm just going to say I have some peripheral neuropathy too from my chemotherapy from the Taxane. So, the EP is able to help with that too. So I'm doing some balance exercises to manage that. So, you know, there's all sorts of benefits with exercise and all sorts of things you can do with it.
Kathryn Wallace: Yeah, and I think having a tailored approach is the key. You know, the individual approach. And, you know, we've got programs like EX-MED. We've got sites where you can access, I think it's the ESSA site that you can access, exercise physiologists in oncology care. I mean, it relieves fatigue. It's good for mental health. It's good for bone health. Like you said, Kathy, a nice sunny day getting your Vitamin D. You know, I think it just... there's so many benefits to it. And starting off small is fine. And starting off at whatever level you're at. There's some women, as I said before, that come in, who have always been very active. And there are others that maybe haven't. So they're at a different starting point. But, you know, my experience is that there's only benefits to exercise and just a well-balanced diet.
Kellie Curtain: What about listening to your body? So there's part of you that goes, I can't get out of bed. This is so tired. But how do you balance listening to your body and knowing that perhaps pushing yourself a little bit will have a positive effect on that fatigue?
Kathryn Wallace: We call it 'motivational interviewing' from a health professional point of view, because it can be a challenging conversation. You know, if somebody is feeling totally exhausted and they've actually led a reasonably sedentary lifestyle, you're not going to get somebody all of a sudden going through this who's going to be enthused about the thought of going out for a 30 minute walk. One of the side effects from treatment can be not just the fatigue, but the weight gain. And for some women, that comes with feeling even worse mentally and physically. You know, putting on a few kilos during chemotherapy is quite common. So it's more sometimes dealing with the mental hurdles rather than the physical. And I think when you can come from a... I guess I'm going to say an evidence-based background of exercise physiologist saying that this is going to improve your energy, this will decrease side effects, this may even decrease your risk of recurrence with breast cancer in some cases, so talking about it in a really proactive, motivational way rather than saying to someone, "You have to do this or you should be doing this." Because that's just not the way to approach it.
I think it has to come from a deeper place and a place of compassion and understanding, and just encouragement.
Kellie Curtain: What about diet? Kathy, have you changed what you eat in order to try and reduce fatigue or what?
Kathy Wells: Not really. I've tried to be better with my fruit and veggies. But no, I haven't really changed my diet much. I don't know about Reina, whether what she's doing.
Rina: I have actually changed my diet a lot. I'm a food scientist by degree. So I'm also very...I love food. And I think the way that it is so essential that what we put in our bodies is what we get out of it, basically. And I really believe that if you fuel your body with good and healthy things, then of course it's stronger to tackle whatever - whether it's fatigue or treatment, cancer, anything. So I did change to... You know, eating lots of high antioxidant... like antioxidant rich foods and just include it in my daily life, so green tea, berries, kale, all these things. And I realised when I started doing that, that I actually preferred it so much more than, you know, the bad habits I would have had before. So it's a really positive cycle for me was that when I started eating really healthy and a great variety of food, then I felt better, and I didn't even feel like food that wasn't that healthy.
Kellie Curtain: Do you think that it actually did something to ease your fatigue? I can appreciate that it was better for your body, but do you think it had a flow on effect to how tired you might have otherwise had... I guess if you had a sugar rush or something, that then leads to a drop in energy levels. Did you actually notice any impact or reduction on your fatigue?
Rina: Well, I didn't... I can't compare it because that's what I changed straight away. But I, for some reason, felt that, yes, my body was strong in a way that I was undergoing treatment and I did have fatigue, but I felt strong. The whole family had a virus and I didn't catch it. I just in a way felt like my core was strong still.
Kellie Curtain: Kathryn, is that a real thing? Can you really help yourself with the food you eat and reduce fatigue through that?
Kathryn Wallace: Do you know what, I think it's more about what can you have control of? What is it in this experience that you can control? And for some women who often feel that there's a total loss of control... I mean, nobody asks for breast cancer. And, you know, over the 25+ years I've seen all demographics, you know, vegans, meat eaters, people that like a glass of wine, you know, people that don't drink. I think diet can be partly about, what can I do that can help me have some level of control about how I feel? So it's not doing sort of these wild fad diets. I'm not a big fan for that. But I think if somebody wants to cut out meat or they want to increase their, like Kathy was saying, vegetable or fruit intake. And so Rina's saying she was really focusing on some really good foods that felt...maybe gave her some more energy. I think that's quite empowering. It's a bit like the exercise. You know, it's using an encouragement rather than a, you know, well, this is something you should be doing.
And I think somehow exercise and diet can be more within the realm of an individual's control.
Kellie Curtain: So, Kathy, a final 'what's you been your biggest learning' when it comes to fatigue and your greatest insight?
Kathy Wells: I think my best advice I could give to women, apart from the exercise which really does help, is to pace yourself. And I found I could only schedule one thing in a day, and I couldn't schedule something every day. So if I was having coffee with a friend, that would be all I could do in a day. And I would make sure I had the coffee out. You know, I'd go and meet in a cafe when we could. And that way I could control the period of time that I was with her so that once I felt tired, I could go home. I could say, "you know, I've got to go now." Whereas if they came to my place, you know, sometimes it's hard to get rid of people. (LAUGHS) They're well-meaning and they want to stay. And they want to keep you company and look after you. But all you want to do is go and have a lie down now. And, you know, I need my nap. So I really I just scheduled one thing a day, and as I say, and then I gave myself some days off. Actually, there's a book that I read an article in the paper on the weekend, a book by a young woman called Briony Benjamin.
And it's called 'Life is Tough (But So Are You)'. And she was diagnosed with Hodgkin's lymphoma when she was young. And she's written this book about navigating her way through that. And her advice about pacing yourself is on days you feel bad, do a little more than you think you can. And on days you feel great, do a little less than you're capable of. And I think that's really good advice. You know, it's easy to overdo it when you're feeling good and think, I'll just do this one more thing, and then you're exhausted the next day. So, I like that bit of advice from her.
Kellie Curtain: Yeah. Really good. Rina, what about you? You've got, you've had a fair old journey so far, and you've got a long way to go. So, what's your greatest learning so far into this experience, and what has been your biggest takeaway?
Rina: So I think, for me, it is set the bar lower than you think, and then you can be positively surprised that you didn't feel exhausted, instead of really try and push yourself and then you pay the price for the next many days. I've done that a few times where I'm just in bed for five days after doing some gardening or whatever. If you really try and... And take it, as you say, plan one thing a day. Take it nice and slowly, and then you can... then it's a good experience for you instead of just go, go, go and then you just burn out, and everything is on fire.
Kellie Curtain: Kathryn, final bit of advice from you.
Kathryn Wallace: I think normalising fatigue. Saying, you know, acknowledging that it's probably one of the most common side effects from having a diagnosis and going through treatment. Setting realistic goals, pacing yourself, definitely. I say to some women in the beginning, if they just feel like they're getting too many text messages and phone calls from friends, maybe set up even a private Facebook group with a select number of people check in once a week. You know, get your friends and partner, if you've got one, to maybe be the gatekeeper for some of those visitors. And, you know, in those early days, because that can be a bit of a whirlwind. And I think, yeah, just resting when you need to, but otherwise be as active as you possibly can. And just accept all the help that comes your way, you know, gratefully and just say, "Yes, that's fantastic" - like Rina has said, "A meal would be great." You know, people want to help. They really do. And...yeah.
Kellie Curtain: You did touch on the fact that sometimes rest doesn't work. Rest is not about getting sleep. What do you do then?
Kathryn Wallace: It's a typical question. I think... Like I said, you know, if you can go for a walk, if you can...20 minutes, you know, I can guarantee there are mornings and I think I really don't feel like doing my morning walk, but I know damn well that by the time I get back in the door, I'm feeling better. So sometimes it is. It's just, you know, putting one foot in front of the other and just, you know... 20 minutes might be all that's needed. So it's, yeah. Just, I guess, persevering and working out what's going to work for you. Try to become habitual in some of these things. The routine, knowing that, like for Rina was saying, between 1:00 and 3:00, that's her rest time. And mindfulness always helps. There's a great app called 'Calm', which is wonderful. You can't sleep, those sleep stories can be really good. And just if you're feeling a bit anxious, sometimes a five, ten-minute mindfulness that you can be guided can also be quite helpful as well. Just depends what works for you.
Kellie Curtain: And we're all different.
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