This transcript was extracted from the ‘Fatigue Management‘ video.

Hello everyone, it’s lovely to be with you today. As Amy said, I’m Judith, I’m one of the occupational therapists in the Northern Trust working in oncology. So I’m here today to talk about cancer related fatigue. And I know that’s already something that’s come up in the question time. So I’m sure this is something that, some of you have already had some experience with.

And, really just want to take a short period of time because this is a long session for you this morning and if fatigue is something that you are experiencing I can appreciate that this can can be quite a lot of information to take on board as well as we go through, but just want to spend a little bit of time thinking about what is cancer related fatigue? What, how, why does somebody experience it? What causes it?

Then what can we really do about that? Or how can we try and manage it? And you’ll see that word manage in there a lot. So it’s not, unfortunately, just about how we can get rid of it, which would be lovely, but how we can manage and work through that. So here we are. This is a very wordy definition, but I wanted to put that there just to really explain the difference when we’re talking about cancer related fatigue.

How is that different to tiredness? How is that different to you being busy and feeling tired at the end of the day, or having a a really hectic week and being exhausted? What what is cancer related fatigue and how does that differ? So it says cancer related fatigue is a distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness.

And we’ll look at that in a wee bit more detail as we go through, related to the cancer or the cancer treatment, that is not proportional to recent activity and that interferes with usual functioning. And that’s the tricky part, is when it starts to interfere with what is normal functioning and what is and what is normal for you, what activities do you do?

What different responsibilities do you have of the day and how does it affect and interfere with that? And that’s why sometimes people find that maybe later on as your maybe as treatment comes towards an end, or maybe you’re starting to go back to doing things that you did before. Where you start to realise this fatigue is getting in the way. It’s subjective, and that really just means that it’s different.

So how you experience it may be totally different to somebody else at the table beside you, but that is still can be fatigue. And we’ll talk about how the different elements of it as well. Big difference to tiredness is that’s it’s not always relieved by rest and sleep. Now rest can help and it is very important and we’ll talk about the balance between activity and rest.

But just to say that, you know, you might feel very tired, very fatigued. Go to bed, sleep great sleep, but get up in the morning and still have that fatigue there. You don’t feel refreshed after your sleep and that’s really where it starts to be different to tiredness. It affects somewhere between 70-100% of people. And that’s really to put that up there to say that high numbers do experiences this at some time. It can be during treatment, it can be post-treatment, it can vary in length and duration that people experience it. But it is something and you’ll see it’s already been reported on and it’s one of those symptoms, that that people do report and probably over the years have underreported because maybe when you’ve been unwell, there’s an expectation that you’ll feel tired or have less energy.

So it’s maybe not always been captured as something that, as a symptom as much as it should have been.

Fly these up here. Just a few statements of ways of people have described it, just so you can see that it’s for some people it’s very physical, for others it can be that sort of emotional or cognitive tiredness as well. I think that’s. Yeh. So yeh. Or feeling trapped that you can’t get out, can’t get out and do things that you maybe did before, feeling that suddenly hit the wall.

Perhaps you’re maybe in the middle of something, you might be making dinner and you just suddenly feel, I can’t go on. I can’t get this finished. I just have no energy, nothing left in the tank here at all. And it can take people by surprise. So just a few ways to report it. There’s another one coming up, distressing.

Here we are. So the impact, as I said at the beginning, it’s not just physical and we can sometimes think about that physically, that lethargy, that exhaustion that you might feel. But it also impacts on other levels as well, emotionally, cognitively, spiritually and socially. So it’s that whole impact on the body. And that again, will be something that is different for everybody as we go through.

Keep me on the notes here. Keep me on track because I could wander off here. But emotional, it’s that maybe feeling quite often people talk about a frustration or maybe a guilt that maybe there’s things that you think you should be doing or want to be doing, that you don’t have the energy to do, and it prevents you from doing that. Cognitive, and by that we mean just our functioning, how we concentrate, our memory. Maybe it’s something that, you know, a birthday or some event that you have forgotten about and kind of takes you by surprise because you’re always very good at remembering those things. But just as if taking the energy affects us physically, it can just affect those processes as well, and it can just slow that down for us.

Spiritually, it’s that stopping you doing the things that are you the things that you engage in and it may stop you from doing that. Socially, stopping you from being able to get out and and enjoy things as well. So what causes it? And broadly speaking, as we said, it is caused by the cancer and the cancer treatment and that different treatments, whether that’s surgery and that time post-op where you’re recovering and, regaining your strength from that, whether it’s through chemotherapy, hormone treatments, the different treatments that you may have. But just want to highlight that there are other things that come along with that as part of your cancer and the treatment that can increase the fatigue as well, that you may experience things like pain. If you experience pain and it’s not well controlled, that’ll effect you being able to rest and being able to relax and that can then increase, the level of fatigue that you experience.

Thinking about your bloods and anaemia different things like that or if you have an infection on board as well. So we’ll talk about why it’s important to get those things checked out just to see if there’s something that’s causing it that could be treated and reversed. Poor sleep and that’s been highlighted and you know while rest and relaxation, as I’ve said, rest doesn’t and good sleep doesn’t always alleviate it, it can help and if you’re not sleeping well, then that’s going to affect your energy levels throughout the day. Dietary problems, not going to say too much about that because Leah’s going to talk on that. But the importance of being able to to have a good diet and get those nutrients that you need to have that energy. Again inactivity and sometimes there’s always comes a wee bit of a trade off here between rest and activity.

But it’s important to have a balance on that and by not doing anything and maybe by sitting or spending an increased time in bed that can actually increase your fatigue. So it’s about getting a balance and a balance that’s right for you and that will be an individual thing. And I know that Maeve will talk a lot more about exercise from physiotherapy coming in a later talk here and go into that in a bit more detail.

Other medical conditions, you know you may have another condition that that you’re maybe you’re on some medication for, maybe a thyroid condition, something else that you’re taking medication for and that can interplay along with it and medication. And stress and anxiety and as it’s already been touched on here, with Kelly’s talk, the importance of that and you know, I think quite often maybe you may sit down or go to bed and rest physically, but maybe it’s hard to switch off our mind.

And maybe there’s things running through your mind and that’s using up energy as well. So maybe it’s, you know, if there’s particular anxieties or stresses that you are experiencing, being able to address those or have support with that will help, as well. So how do we manage fatigue? And I think it’s really great that whenever Dr Quinn and both Patricia were up here, there was saying contact them, know your body, know yourself, contact them if anything’s different.

I just want to highlight if you do start to experience fatigue or a change in the level of fatigue your experiencing, seek medical advice, talk to to your oncology team. Talk to your nurse specialist. Talk to your GP, raise it with somebody. And for the very things that I have mentioned there, that there are some other things that can be impacting on that that maybe can be reversed, that can be treated, and it’s important that those are addressed and that may make a change in the level of fatigue that you’re experiencing.

But as I also said, we talk about managing fatigue and unfortunately there isn’t a quick fix or a tablet, a medication that can get rid of this fatigue. And quite often it is that because the fatigue is caused by the cancer and the cancer treatment, and you go through that really important treatment, that sometimes the fatigue comes alongside it.

And we need to look at how to manage that and how to, I suppose, get the most out of the energy that you do have and that’s really a lot of it is kind of back over to yourselves and looking at self-management and within occupational therapy, we really want to help to sort of maybe give you a few ideas and a few tips on, on things that maybe you can do to to help with that at the minute.

And that’s what we’ll just cover in the next few minutes. So if we think of ourselves like a human battery, I have my mobile phone here. That’s my doing a stopwatch job for now so that I don’t be up here too long, hopefully, but that phone is so important to me. That phone keeps me in touch. I know that family have my number if you need to get in touch with me, I have my diary on that, which makes sure that I turn up at the right places at the right time most of the time, you know, and I use it for anything, want to find out about the news you can go onto your phone, you can do all of that.

But if I’d of forgot to charge that, if I forget to plug it in at night and charge it up, it really once the battery runs out it’s pretty useless. It’s not doesn’t do anything for me. And we’re the same, you know, we’re much more intricate and so much more important than the phone as individuals but we need to ensure that we are getting our supply right.

If we’re going to have energy, we need to try and work on that. And you’ll see over on the, see if it comes up. Yeh. Supply sorry and demand. Our demands will be different for each individual, work, family commitments. What you’ve got going on will be different. Your supply, some of the headings there, things that we need to do we’ve touched on it, diet, nutrition and Leah will cover that a lot more, exercise and Maeve will cover that one.

Sleep, having good sleep and talk about good sleep hygiene, cutting out caffeine at night, you know, not watching TV very late at night, different things that you can do and I’ll not go into it in detail, but there are good information out there about sleep and how to help with sleep. Being on the right medication what’s right for you, the optimal medication.

Relaxation and Kelly’s touched on that as well and the importance of that. Relaxation is really about resting your body and your mind. And as I said, sometimes you maybe sit down but your mind’s still very active. Relaxation can help you to to cut out that that mind activity and to really rest your mind as well.

That can be many different things. Relaxation can be a hobby, an interest that you have. It can be spending time with family, friends. It can be reading a book. It can be taking, enjoying complementary therapies. It can be engaging in a relaxation activity such as mindfulness, different things that are out there. So there’s so many different things, not one fits all. So it’s something to think about. And me-time really, really important. I think if your energy’s low, those are maybe the things that get cut out, the things that you really enjoy that we don’t make time for. But just to really say that those are often the things that bring you joy, that lift your mood a little bit.

So they are really important. So try and incorporate those in, don’t cut those out. Make sure there’s a bit of time for you and for what you enjoy doing.

But what if you do all that and you do everything right and you maximise your diet and you have good sleep, but still your battery’s not full. If we can only get that battery half full or two thirds full, then how do we go from there? A few wee P’s here. We talk about the three P’s. So if you can maybe remember that when you go away today to plan, to pace and prioritise, three simple terms but can be really useful if we’re trying to manage a less lesser amount of energy. Planning, you’ve maybe seen this little booklet from Macmillan “Coping with Fatigue”. Really useful if you haven’t, pick up a copy today. There’s a lot of useful information in that for yourselves or for family members, friends as well, just to explain what cancer related fatigue is a lot of what we’re covering, but in a lot more depth.

In the inside the wee booklet, there is also a diary that you can use, which is a really good way if you’re experiencing fatigue to record, and it allows you to record what level of fatigue you feel at a particular time of day and throughout your week. Useful to then look back at the end of a week, or even at the end of the month to see what why was I more tired then? Why did I feel more fatigued? What was triggering that? What was I doing? How could I change that? Also, going forward, using your phone, your trusty phone, or your calendar at home, thinking about what’s coming up and planning things out. If you don’t have as much energy as you would like to have, it’s maybe about spacing out those higher energy activities.

Now you say higher energy activities, what is that? But it’s just thinking about something that you’re doing you know, if you’re going to a family wedding and you’re out all day, that’s a big thing that’s going to use a bit more energy than maybe an hour meeting someone for coffee, a friend who calls round that’s less energy activity.

You know, if you’re cleaning the whole house, as opposed to, I don’t know, cleaning one room of the house, things like that. It’s just trying to think about the way we do things and space them out as well, so that you’re not doing a whole lot together. If you’ve appointments or you’re coming to something like this today, which has taken quite a chunk out of your day, build in time in maybe to rest before that and after it, that you’re not doing too much. Pacing yourself.

I think we all get fall into that trap of that boom and bust, up and down. Where maybe you feel this is a good day, I’m just going to do a job or two around the house here, feeling pretty good, I’ll do a wee bit more and then you sit down, you’re exhausted, you feel I’m going to rest, but you see something that needs done and you get up and you do it.

Then you maybe see something else and you push yourself on until you end up right down at the bottom here where you’re totally exhausted, takes time for your body to recover and build back up from that. So we would say try and avoid that over and under activity, as well as trying to avoid under-activity where you’re maybe not active at all.

So try and find somewhere in the middle that works for you. A really good way if you’re wondering where that is, is to pull it back, do a little bit. See how you feel tomorrow. If you feel good, do a little bit more and build it up very gradually and slowly to increase it that way, to have that comfortable level of activity.

Prioritise. I’ve got my money box here thinking about putting things in order, of importance and being realistic. You know, if your battery’s not full it is a bit like money, once you spend it, it’s gone. So if you say yes to something, it can mean that you have to say no to something else that might be more important.

So it is about thinking out what are your priorities? As it’s been said, being realistic about those goals, thinking of your ladder, you know, where you’re getting to, your steps in between that, delegation. You know, if there is somebody there that is offering to help or support, if there’s something that they can do that removes a task that you feel that needs to be done, that will again allow you to have that chunk of energy, maybe for something else.

Energy conservation, now I’ve said it’s like money once it’s spent, it’s spent. But we all love a bargain, don’t we? When you go to the supermarket and there’s a 3 for 2 or something on like that. This is about trying to stretch that energy. How can we get the most out of it? What can we do to minimise the energy used?

And in occupational therapy we talk a lot about that. Different ways to do something to conserve energy. We use a lot of equipment as well. Things thinking about that in the house, you’ve probably got loads of labour saving equipment and appliances that you have.

Some of them are wonderful. Some of them are really not worth it because of the time you clean up afterwards or wash them it would have been easier just to do it by hand first off. But thinking about that really straightforward thing, thinking about where you store things at home, you know, if you’re coming down the stairs in the morning, have you got something you need to bring down with you, or you’re going to be rushing back up the stairs in a minute because you’ve forgotten it?

Sometimes it’s just pause and thinking where it is, keeping things that you use frequently where it’s handy, not away in a back cupboard because they’ve always stayed there. Even thinking about something as simple as in the kitchen, making a cup of tea, you know how far do you walk between you lift your mug, you get your spoon, you go over, you get the milk?

Obviously, your fridge is where it is. But thinking about where we keep things, if it is that you leave the teabag sitting out in a mug, out in the bench, and it’s handy for you, do it that way. What works for you? Equipment and adaptations, if you’re finding difficulties at home, maybe difficulty managing the stairs or difficulty accessing bath/shower, things like that, do you get in touch with occupational therapy we’ve community OT’s throughout the whole of the trust.

You can self-refer to them. You can also speak to me or get in touch through Laurel House. You know, if there’s a if there’s something that we can do to provide equipment just to help you to maintain your independence and maintain safety in those tasks at home, we’re really keen to do that as well.

Relaxation. Yeh I’ve said relaxation is different for each individual. Thinking about what helps you to relax, that can be many different things. There are those relaxation techniques, exercises that we can certainly direct you towards, things that do try to help to rest the mind and the body as well. So it’s just to try and help to switch off so that you can get that full relaxation.

We do have some resources that we can get for that. There are others out there as well, complementary therapies. Some people find this really useful to help to relax. Do speak to Amy or to some of the people that are here today. You know, if you’re thinking of availing of complementary therapies, you can access that through Laurel House.

But, you know, accessing someone who is appropriately trained and able to to provide the treatment that’s appropriate for you with your cancer diagnosis. Just being aware of that as well. To go to somebody reputable too.

Fatigue workshop I’ll put this up at the end. We are fortunate here in the Northern Trust that we have a fatigue, cancer related fatigue workshop that’s a two week programme that runs and I see it’s up there for January. Coming up in the new year, there will be talks kind of similar to what you’ve had today, but focusing on fatigue.

And there will be, input from a lot of the professionals here. We’ll go into these things in a lot more detail, be able to look at your own individual fatigue, what triggers it for you? How can we help to manage your particular fatigue? But a really important thing about the workshop is that it’s an opportunity to, in a smaller group, meet people who are also experiencing cancer related fatigue and just share with them.

And it can be a really great experience from that and I think that’s one of the key things about the workshop that we really enjoy is that opportunity for people to come together and work through those things. So if you are experiencing fatigue or you are interested to know more, please do consider signing up for the workshop and coming along to that. We’d really love to have you at it. And I think that is me. Yes. Just in the last closing. If you take nothing else away from what I have blabbered on about, think about the three P’s and if you can think of something that you could do either to plan, to pace yourself, or prioritise, some small change that you could maybe make, and hopefully that will have an impact on how you’re feeling.

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

Brilliant.