This transcript was extracted from the ‘Thyroid cancer – Managing fatigue‘ video.

So good afternoon everyone. I have the lovely job of meeting you all during the afternoon slump whenever you are all probably fatigued anyway, and try and keep you engaged to talk about fatigue, but we’ll give it a wee go. So my name’s Aileen, I’m an OT and I work in Antrim Area Hospital. I work in the acute ward, so if you have been admitted or with any complications of your cancer, you may have met me.

But I also would go up to Laurel House as well. So if you are having treatments in Laurel House, and you think after the talk today, you might want to talk to an OT just speak to one of the nurses and we can go up if we’re available or arrange a wee appointment or something with you. Ok. So just to let you know how to avail of our services.

So the first thing I’m going to read out this definition of fatigue. So, fatigue is like a recognised symptom of cancer and it’s really important to like acknowledge that because so many, so many people suffer from fatigue. So it is to be recognised. And this is the this is what our guidelines tell us what it is. So, cancer related fatigue is a distressing, persistent, subjective sense of physical, emotional and or cognitive tiredness or exhaustion related to the cancer or cancer treatment that is non-proportional to recent activity and it interferes with usual functioning. So that’s a big blurb so we’re going to try and break that down a bit. So just the first thing to recognise is that fatigue is very subjective.

So everybody experiences fatigue in a different way and as Sue very highlighted in her talk, like we do have things now like social media and you might be seeing somebody out that has gone through a similar journey to you and they’re walking the roads, they’re doing this, they’re living life to the full and there you are, feel trapped in the house that you can’t feel you can leave the house.

Social media is very deceiving. So just take one thing away and just don’t be comparing yourself to other people, because everybody’s journey is subjective, and we only ever hear the good reels of people’s lives. It’s always not alleviated by rest. So I’m sure you all have recognised that you’ve maybe went down to have a wee nap and it’s really hard for loved ones to understand this as well, that you’ve had a wee nap and you’re not coming up and you’re not bouncing ready and fit for the day because it’s not always relieved by them wee naps and rest and sleep. So rest is not always best where fatigue is concerned and it affects nearly everybody, there’s 70 to 100% of people it can affect with different cancer groups.

So nearly everyone is affected at some stage. It’s also important to highlight that fatigue can happen at any time on your cancer journey. So it is really easy to kind of recognise if it’s happening with your treatment and your cycles of chemo, that’s like nearly expected. But some people experience fatigue, you know, after they’ve maybe finished treatments and they’re maybe 3 or 4 months down the line and they’ve just suddenly hit a wall.

So basically, sometimes we’re running on adrenaline and we can just crash at some stage whenever you think, oh right here we go. We’re getting up to go again and fatigue can just hit you. So it is really important to recognise that at any stage and everybody’s journey fatigue can affect you at different stages. So this is what we hear some people describing fatigue as.

“Everything takes so much effort. I’m exhausted and drained. I’m overwhelmed. I’ve just felt like I’ve suddenly hit a wall. I’m tired even after sleep. My memory is not what it used to be. I’m frustrated and I can’t finish tasks. I’ve got poor concentration. It just won’t go away. I feel trapped. It’s distressing”. Ok, so that’s all the things we have heard people describe fatigue as and many more as well.

So fatigue impacts all areas of our life. So it is always obvious whenever it affects our physical being. So when we physically can’t complete tasks because of fatigue, but it also affects us emotionally. So that’s whenever we’re emotionally drained. Like we just feel like we can’t we’ve got anxiety, we feel depressed because of fatigue, so it affects emotionally as well.

Socially, you’re not getting out to be able to do the things that used to be able to go to, groups, socialising with friends, meeting up with family sometimes can be very difficult. So our cognitive ability, so that’s our thinking. So it affects lots of people’s memories, memory, concentration and attention. And then also our spiritual well-being as well.

So we mightn’t just feel who we are supposed to be. So maybe you identified as being the gardener, you were the biker, you were the baker and you’re not able to do them things anymore. You’re not able to get out to your church, to get out to all your activities. So you lose your sense of who you are as well.

So it can affect how you are spiritually as well. So these are all the areas. So it’s just to recognise that it affects all parts of our lives. So what causes fatigue? Well our cancer and fighting the cancer uses lots of energy in our body, the cancer treatments, if our pain’s not managed well, we’re not getting good sleep, we’re not getting good rest and obviously pain can affect our fatigue levels, if you have other medical things going on like anaemia, poor sleep or dietary problems, and we’ll hear from the dietitian later, inactivity so obviously we’ll hear from Maeve the physio later about activity, how it can help with fatigue as well, and then other medical conditions that you may have going on, medications and also stress and anxiety.

So there’s lots of things that that cause or that contribute to fatigue. If you are feeling fatigue is just totally the main symptom of your cancer that is really disrupting your life. I would advise you first of all, to go to your GP or go to any of the oncology medical professions just to get bloods checked, just to get anything medical ruled out before you move on to this next one, which is self-management.

So this is what you can do for yourself. So do speak to GP/oncology professionals just to see if there’s anything else that’s contributing to the fatigue. Get that kind of ironed out first before you think about how you can change your day. So self-management is what we’re going to talk about today. I want you to think of your body as a human battery, ok.

And a human battery, any battery, you have to put something into it to make it go. So you have to put fuel it up, you have to fuel up a car, you have to fuel up your phones, you have to fuel up your home and your human battery as well. So things that fuel up our human battery are things like your diet and nutrition, your exercise, sleep, medications, relaxation and your “me-time” so that’s things that fill up your cup. And then the things that use up the energy. This is things like family commitments, work demands, household activities, dealing with your illness and the treatments and stress and anxiety and many more. But basically, what we’re going to try and do is to balance these out and think of ways that we can maybe change things in our daily routine, that we can balance these things out.

Oh, that’s our supply and demand. Sorry. So these are some of the wee strategies that we have worked out that help people and it’s just about reframing your mind and reframing how you do things throughout the day. So, we talk about the three P’s, the planning, pacing and prioritising. So first wee P is to plan your days. So, some people find it really useful there is a wee booklet down within the Macmillan, there might be one down on the desk and it’s how to manage your fatigue and in that’s a wee diary and it’s basically just for the next couple of weeks, keeping a diary of the activities you do and like which activity that you need to use the most energy for or what the activities are that are the relaxing activities that fill up your cup.

And just keep a wee note and it might surprise you the things that are really actually draining your battery. So it’s a good idea for the next couple of weeks to keep that diary, so as then you can start to plan and look at how to plan your week. Space out that high energy activities.

So if you’re doing like mowing the lawn or doing the housework, not doing it all in the one blast, try and space that out throughout the week just to try and conserve your energy, and then using your phone as reminders, as wee cognitive reminders as well. So the next one is pacing, so this demonstrates the boom and bust cycle.

So often if you have recognised, do you know, in the morning time, that’s whenever I have the most energy, in the afternoon I have the most energy, on a Tuesday and Wednesday I have the most energy, we try and fit in all them activities in them two days or in that one afternoon, and it’s just important that’s whenever you’re going to come in that’s whenever you’re peaking, you’re doing all activities, but after a peak always comes a bust, ok. So we want to space the activities out a wee bit and not get into this cycle of booming and busting. Lots of people they will peak for half a day, but then be floored for two days afterwards. And whenever you’re continually doing that boom and bust cycle, you’re going towards burnout where you won’t be able to function at all for a wee while, ok. So we have to try and level activities we go, we go throughout a day, throughout the week and try not to get into this boom bust cycle.

So that’s just about pacing activities. The next thing is about P is prioritising activities. So putting activities in orders of important. Sometimes it is useful to label activities. So if you think you have three buckets, put the most important things, the ones, the activities that are non-negotiable, you have to do.

And non-negotiables are different for everybody. So somebody might feel they need to have a clean floor to be able to have a clear mind, so if that floor is not washed, I can’t go on it, if that gardens not mowed, I can’t do anything else. That is a non-negotiable for one person, whereas another person that can be something that’s left till a day, whenever you feel a bit more energetic.

So everybody’s non-negotiables are wee bit different. So you think of your non-negotiables, so that’s the things you can put in your high priority bucket. Then you have things that you can do but you can be flexible around it a wee bit. So like mowing the lawn you could for some people it might be, do you know what that’ll do to next week,

I don’t need to do it, it might be a wee bit overgrown but it’ll do to next week. So put that into your middle bucket. And then you have things that you can put in that you could do, but you don’t really have to do and it could be as simple as ringing somebody that you think you need to talk to, but they drain your energy so they don’t need to be done, that doesn’t need to be done this week, whenever you’re having a bad week, ok. So put that into the third bucket. We we all have them people, I’ll not shy away from it. But just labeling things, whenever you label things and put them into these three different buckets, it does make you have less guilt whenever you don’t do something and like it just frames things and changes your frame of mind around activities that you have to do.

And also there’s a wee diagram of a piggy bank. So if you think of how you use your money, just think of your energy as how you use your money. So once you spend your money, it’s gone. Once you use that energy, it’s gone as well. So spend it very wisely. And every time I get up here, we’re always pinching pennies a wee bit further.

So it’s always, you know, just think of your energy like that as well. We’re all in this fuel crisis at the minute and thinking about how many journeys we do a day, think about how many journeys you’re, how many activities you’re doing a day as well. Ok, so that’s prioritising. Then another just another wee point to make just energy conservation.

So where your positioning yourself whenever you’re doing activities, think if you could, you’re always conserving your energy a little less whenever you’re sitting down to do activities. So if you could sit at the kitchen peeling potatoes, sit out in the garage while you’re working at something in the garage, if you conserve your energy, just think of your positioning of where you’re at.

We do have bits and pieces of equipment within OT, and if you do feel that there is anything we can help you with, do get in touch. We have community OT’s then as I say if you’re attending Laurel House, or even if you’re attending consultant appointments in Laurel House, you can ask to see an OT as well. Ok. If you think there’s any aids or adaptations that just might conserve your energy a wee bit, every little bit of energy counts. And then relaxation, Sue has touched on this.

So just factoring in relaxation into your day and your week and this can come in many different forms for many different people. So it can be meditating, it can be playing music, it can in fact be going out for a walk as well, that can be a relaxation activity and then using complementary therapies as well. So just think about how you’re going to use your relaxation time and your “me-time” to fill that cup back up again and that battery back up again.

And just to finish off with in with Macmillan, we have a wee fatigue workshop and it runs over a couple of weeks and it’s an opportunity for you to come in and meet your peers, meet people that’s going through a similar journey than you, and just to chat with them. We there’s going to be health professionals as well, and we will give you some tips.

It’s just a bit more informal and gives you a chance to discuss how you’re managing fatigue or how we could manage fatigue. And often people are going away with wee ideas they actually got from a peer that attended the group as well. So it’s a really nice it’s really nice group to attend. If you think it is a group that you would like to attend, just do chat with Bernie or someone from the Macmillan desk and they can put your name down and let you know whenever the next wee group’s going to be run.

So that’s really all for me. I hope you didn’t fall asleep during that talk and as I say, we are available. OT’s are available, so if you feel you need to talk to one of us, just give us a shout, ok? Thank you.