This transcript was extracted from the video ‘Breast Cancer – Fatigue Management‘ video.

So now we move on to our next speaker and apologies. The agenda was not changed Judith Oh, so it’s actually Judith McCullough who is an occupational therapist, and she’s going to do our talk on managing fatigue. So let’s welcome Judith.

Good afternoon everyone. And I thought maybe I was getting out of doing a talk when I saw that, but no, you’re stuck with me today. As Amy had said I’m Judith McCullough. I’m one of the occupational therapists in the Northern Trust working within oncology. And it’s lovely to be with you here today. I’m going to talk a little bit about managing fatigue.

And I just want to say at the outset that I’m quite aware that I probably talking to some people here who are more expert on this than me. You know, for some of you, you will have gone through this. You will have felt that fatigue, you will have experienced it, and you will have managed your way through it.

So, hopefully just as we go through it, there might be some tips or things that other people may pick up from that, as we go along. But I think even just from from the buzz, when I came in just of your chatting with each other, you’ve probably been able to share your own experiences and, and share your story and how you manage through these things yourselves.

So hopefully I’ll get these. This is multitasking and I’m not good at it. So apologies from the outset. So cancer related fatigue I’ve got a lot of words on the screen there that would make you tired reading them, but it’s really just to explain what we mean by cancer related fatigue at the outset. Before I go forward, we say cancer related fatigue is a distressing, persistent, subjective sense of physical, emotional and or cognitive tiredness or exhaustion related to either cancer or the cancer treatment that is not proportional to recent activity and interferes with usual functioning.

And that’s the thing. It interferes with what you would do normally, and that’s when it becomes a problem. It say’s there it’s not just physical. I we’ll to touch on that a bit more as we go through. And it’s not proportional to what you do. So if you’ve had a busy day, you would feel tired. But that’s not always the case.

You might not do an awful lot but still experience that fatigue. It’s subjective, which means it’s just can be different. So what you may have experienced and what the person beside you experienced might be a totally different, characteristics of fatigue. But that they can still be cancer related fatigue. It’s not always relieved by rest and sleep, and as we say, if you’ve been busy and you rest quite often, you wake up, you feel refreshed.

Unfortunately with fatigue, that doesn’t always happen. Resting can certainly help, but it doesn’t always alleviate it. And you may still feel fatigued. Just a few statistics there. There’s some research done, affects that cancer related fatigue affects between 70 and 100% of people that have cancer. And we feel that sometimes it’s maybe underreported. It’s something that people just accept as it comes along with an illness.

But it’s just to say that it’s a high percentage of people will have it at some stage. It can occur during or after treatment as well. Just a few statements that people maybe have have said of how they would describe that idea of just hitting the wall, feeling trapped, not able to go and do what they wanted to do, being overwhelmed, affecting concentration, affecting the memory.

And these are all three areas that maybe we don’t think about initially. When we think about fatigue, just the impact that that has on our whole whole being. So the impact of fatigue, just as we said there, it’s not just physical. Yes, it’s the physical characteristics of it. And it’s that feeling of exhausted, feel lethargic, difficulty getting tasks done, finishing something, maybe start to make dinner and just exhausted before you get that finished.

Emotional. Just maybe those feelings of anxiety, bit of frustration, maybe guilt, and sadness just about the things that fatigue is stopping you from doing and cognitive. And this is our thinking. So when we think about when we do something physical it uses physical energy, maybe we sit down and we try to rest, but sometimes our minds are still very active and that’s still using up energy as well.

And so you might find that maybe more difficult to to concentrate, to read a book maybe you’re a keen reader. And it’s just a wee bit more. You’re tiring quicker. You’re not finishing the chapter. Maybe, things that we’re really good at remembering, dates, birthdays. Never missed them. Maybe something slips your mind. Just sometimes if you’re more tired. This kind of can affect as well.

Thinking spiritually and just about who you are and the things that we all engage in and that we normally do. And fatigue can stop that. And it can just sometimes make maybe feel a bit lost or unsure and socially just getting out and doing those things that you do that takes energy as well. So while we might enjoy those things, if you’re experiencing a lot of fatigue that may be preventing you from going out and doing things with family and friends that you would usually try.

So what causes it? We said back in the definition cancer, that it is caused by the cancer itself or by the cancer treatment, just as the cancer uses energy within the body and the treatments and maybe through surgery, the time for rest and recovery from that afterwards, that body puts that energy into healing. Going through chemotherapy, you may find that your energy goes up and down and cycles along with your treatment.

Through your, if people have had radiotherapy, people tend to see that it maybe builds up as a treatment progresses, that you become more fatigued as you move through that. But again, it’s different for each individual. Just want to put up there that there are other causes of fatigue, and there’s quite a number of them just to touch on. And these are other areas that maybe something can be done about.

So maybe if you’re experiencing a lot of pain, if your pain is not well controlled, that will be affecting your rest and your sleep. By getting pain and getting that pain managed appropriately, hopefully that will help. Anaemia is up there always getting bloods checked, Just checking levels to make sure that that is as it should be.

And your nurse and your GP and your oncologist will be able to, to support for you that. Sleep. You know, we said that rest doesn’t always alleviate it. But having a good, good sleep and good and sleep pattern will really help. And to help to manage it. Dietary problems. You know, we all need to eat and drink to give our bodies the fuel that they need to create the energy.

So that if you’re experiencing nausea, maybe you’re not eating great different symptoms that will impact on your energy levels and that’ll be touched on later. Inactivity and not exercising. And sometimes you think rest is good and it is. But it’s all about balance, a balance between rest and activity. And just by being inactive totally can increase fatigue.

So it’s important to keep some level of activity. Other medications maybe other conditions that you have and just side effects and things along side that, you know, if somebody has a Thyroid condition that can interplay and increase fatigue as well, and stress and anxiety as Kelly’s touched on, you know, through this, you maybe have a lot to think about, a lot to process.

And being stressed or anxious will use up energy as well. So maybe, you know, getting help to to look at those things as we move through. So how do we manage fatigue. Getting to the crux of it now. First thing I want to say is for managing fatigue is if you’re experiencing an increase in fatigue, do report it.

Speak to your GP, speak to your nurse specialist, tell them about it, to see if there’s anything that can be changed, anything that can be reversed to help to manage that, just put up a few examples of things there and that is really important to see what is the cause of it to see what we can can be done.

But as I said at the start, it is caused, cancer related fatigue is caused by the cancer and the cancer treatment and those things are necessary. Your treatment is necessary. So how do we then look at managing. And that’s really about self-management. And what kind of handing it back to yourselves in this through that.

So I want to give you a few tips, and things around that. If we think of ourselves as a human battery, you know, we’ve all got our smartphones in our pocket and they’re wonderful and they’re great, but if you don’t charge it at night, you get to maybe teatime and there’s no battery power. You can do nothing with that.

It’s just this little box that you have. But it doesn’t. It doesn’t work if it’s not charged up. So we are the same. We need to charge ourselves up. We need to get our supply right to meet the demands. Everybody’s demands will be different. Work demands, family commitments, different things that will be different for each individual. Our supply, again will be will be tailored to yourselves.

But it’s things like getting a good diet, good nutrition. And Leah, we’ll touch on that and talk a lot more about that soon and exercise. And I know Meave will follow up on that one. Sleep, having that good sleep pattern, being on the right medication, and then a couple other wee things are relaxation and me time we’ve put down there.

Sometimes if you don’t have a lot of energy and there’s things that have to get done, it’s the things you enjoy or those little things that are your interest that maybe get left out. Those are the things that have to go first. You don’t have the time or the energy for, but those are the things that maybe bring you the greatest joy, that give you that sense of, you know, just really bring you to life and, and things that you enjoy.

So please leave a bit of energy in there for those things. Don’t take those out, build those in, really important to look at that. So if we get this all right, you do everything best you can with your diet, exercise, all of that. But maybe you can’t get that battery to full power. Maybe you’ll getting to 50%. Then how do we get the most out of that energy?

Three P’s? Want you to think about that today. Plan. Pace. Prioritise. Three simple words, but just real key, things to try maybe to help you if you are experiencing fatigue. Planning. And that’s just simple thinking about what? What do you do of a day. What do you do of a week. What’s coming up? Plan on around it.

Don’t put a whole lot of high energy activities together. You know, if you have an appointment and you have to go to the hospital for that, leave in time the day before that, you don’t have as much a on, you know, if there’s a family event coming up, spacing things out like that, you have time around that. If you’re doing things within the house, again, just spacing it out and planning on that.

You’re not doing a lot together. Pacing yourself. And really important, I’ve forgotten to do my clicker now, here we are. So planning as I say. So keeping a diary. Looking ahead, another wee important thing is maybe using our reflective diary. So maybe if you have the little book there, coping with fatigue, there is a little pull-out book there, in the middle of that, where you can keep a note of, of a level of fatigue so you can rate it, time of day, particular day of the week, how you would rate your level of fatigue.

It’s good to look back and see, why was, why was I feeling more fatigued that day than another day? And sort of to look and see if you can see what the triggers or causes are to work around that. Pacing ourselves, preventing that boom and bust sort of routine where you’ve got that over and under activity and we can all fall into that trap where the weather’s good, you get out to the garden.

There’s a lot of things you want to get done. And in Northern Ireland it doesn’t always stay like that. Sure it doesn’t. And so before the rain comes back, you want to get things done. But it’s about stopping on before you hit right. Rock bottom doing a little bit, resting. And if you feel good then maybe increasing that doing a little bit more of the day after I’m building it up rather than falling into that trap of being absolutely exhausted and not able to do anything the following day. Prioritise. You know, we need to think of our energy a wee bit more like our money. It’s, you know, when you spend your money, it’s gone. That’s it, you know, it’s done. An our energy is the same. We try to stretch it, but it’s really thinking about if you say yes to something, you may be saying no to something else.

And if you spent your energy it’s gone. So prioritise then delegation is a wonderful world. If you’ve got, word sorry, if you’ve got people around you that maybe are able to help or often to do something, you know, consider that if there’s tasks and things that you don’t particularly enjoy, if we can move those to somebody else. That would be my, advice there for that one.

But you know, sometimes acceptance not always easy, but maybe accept an offer of help can can can allow you to have that energy for doing something that is really important. Energy conservation. And as occupational therapist we talk about this. And this is really is about trying to stretch that wee bit further, trying to minimise the energy that’s used.

Just thinking about, you know, you go into the supermarket and I’m always looking for a three for two, you know, what can you get for a little bit more spend on the same amount. So thinking about even simple things about where you keep things, you know, you go into the kitchen to make a cup of tea. Are you round to the kitchen four times before you’ve got everything you need?

Or is it easier just to have the mug and the teaspoon and a few bits and pieces sitting where it is? You just need to get to the kettle on the fridge for your for your milk that just just because we do things a particular way, sometimes it’s about thinking, well, let’s do it a little bit differently, and just, adapt and things put up there about, equipment and adaptations and again, from occupational therapy if there, if you know, if you are finding getting round to home, maybe accessing bath showers, there’s things like that a little bit difficult.

Do come and speak to me or we can link you in with your community occupational therapist to see that there are different equipment and things that we can do to try and help to to maintain your independence and keep safety as well in the home. So think about relaxation. What helps you relax? I said earlier, it’s key to make sure you have time for those things that you enjoy.

You know, for everybody it might be different, maybe it’s listening to music. Maybe it’s a bit of gentle exercise time with your friends. Going out and having a coffee, what is important to you and what is good for relaxation? Really, really good and important to do relaxation techniques and exercise. And so many of them, you know, there’s mindfulness, meditation imagery, and lots of different things that you can try.

I would say it’s not one size fits all. Find something that works for you, but they’re all working on the same principle that there trying to focus, not just focusing on the body, resting the body, but resting the mind as well. And I said that already. You know, sometimes you sit down, you go to bed at night and you’re physically still, but your mind’s maybe reeling.

So it’s trying to get something to help you to, to relax in the mind as well. We can help with that for relaxation or maybe complementary therapies as well. You know, some of the charities are here today or speak to Amy or Bernie at the end. About options for that. You know, it’s really important of complementary therapy, that this can be really useful to help with relaxation, but it’s important just to check that the complementary therapist is appropriately trained and experienced for, for and treating somebody with a cancer diagnosis.

So just be mindful and check that out. Well. Big plug for the cancer related fatigue workshop that we have in the Northern Trust. This is an opportunity for you if you, if you are experiencing fatigue, to sign up to come along to a two week workshops, two sessions you will hear from people like me and the other speakers that are here today who will input into that, but it’s an opportunity to come along similar to this, but on a smaller group.

Just look more in depth about fatigue and try to manage that fatigue and what contributes to it. So I’d really say it is it’s a great opportunity to come along and meet other people and share and learn from each other. So if you are interested in that, please do speak to me or to Amy or some of the others here at the end, and we’ll get you signed up for that one.

Just and in finishing then. That’s really me done, a bit of a whistle stop tour through there. Just yeah, the three P’s. If you can take that away and try and put that into your week, try, plan, pace and prioritise this week and see how your energy levels go. But I’ll be about at the end if anybody has any, any questions.

But thank you very much for your time. Thank you. Yes.

Judith, thank you so much. And as Judith says, we do have the fatigue management workshops. We actually have a space or two left on our one happening next week. So Tuesday the 20th and Tuesday the 27th in Ballymena in All Saints Parish. We do have a space for two for the fatigue workshop from 1:00 to 3:00. So if anyone is available, please do speak.

Speak to us at the information and support table and we’ll get you signed up.