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The main findings of the study are organised into themes below.
Theme: cast adrift with no direction
This theme reflects participants’ experiences on completion of active treatment. They felt shocked by the dramatic end of structured support when their treatment ended and left feeling lost. Ongoing feelings of fear were also an issue, especially fear of cancer recurrence. They had mixed experiences regarding health care professionals’ advice on exercise. When given information, it was mostly general, with little guidance on suitable exercise for their specific needs (Table 2).
Everything revolves around treatment
In the sub-theme ‘everything revolves around treatment’, participants reflected on health care professionals’ primary focus on treatment and their sense of isolation on discharge, feeling ‘left out on a limb’ (P1: FG4). They used terms like ‘loss’ and felt they had fallen ‘between the cracks’ (P2: FG7) and struggled with the transition, not knowing what to do next to improve their sense of wellbeing: ‘being able to move and functionality is just, it’s missing’ (P1:FG6). This aspect of their journey permeated deeply into their overall experience.
Participants explained how upon completion of treatment, they yearned to return to how they felt pre-diagnosis. However, cancer and its treatment resulted in a myriad of physical and psychological side effects that made it extremely difficult to begin the process of restoring their health; ‘if you’re feeling a bit rubbish. It’s, you know it is much harder to (Laughs) talk yourself into going out and doing some exercise’ (P1:FG3). Participants wanted to kick-start their recovery by improving their lifestyle but there was no structured guidance; ‘there’s not a lot of structured follow up with regard to exercise and nutrition (P4:FG1). Some participants relied exclusively on cancer charities, such as the Irish Cancer Society for information. Others accessed online message boards; ‘searching the web myself and doing my own research’ (P2:FG8).
Panic and fear
A common experience shared across all focus groups was participants’ sense of panic and fear. Many descriptions suggest distress including ‘rolling panic attacks’ (P5; FG1) and ‘facing death’ (P3; FG1). Other frequent terms used included ‘depression’, ‘fear’, ‘isolated’, ‘feeling down’ and ‘paranoid’.
One reason explained for these feelings was related to a worry about deteriorating physical function’ ‘it’s a long time to lose strength, fitness and it’s very hard at an older age to actually regain that. That’s what kind of gets me. You know you at a certain level of, before you start all of this but each step the way it’s getting worse, it’s going down and down, you’re losing strength, losing stamina, fitness, cardio, ability and you just at some point, you just feel so, I feel old, I feel weak’ (P1:FG5). Participants were acutely aware of their decline in physical function but they also felt incapable of halting or reversing this decline due to a lack of support and guidance: ‘it’s all about prevent recurrence and you know keep yourself healthy but sure if nobody tells you the details it’s very frustrating’ (P2: PG4). Participants stated that a continued feeling of helplessness can lead to negative thoughts and depression in some instances. Moving on from treatment was for some, more difficult than the treatment itself; ‘to get through the treatment psychologically is as difficult as getting through it physically. And when you finish treatment picking yourself up and carrying on is far more difficult than the treatment itself’ (P4: FG3).
There was also a ‘fear of recurrence’ (P3; FG4), which resulted in a heightened awareness of their bodies ‘of any little twinge, ache or pain is that something coming back’ (P2; FG4). The cancer diagnosis caused participants to feel let down by their bodies. ‘It is frustrating when suddenly your body lets you down’ (P1:FG3). Regretfully, participants examined their past lifestyles to try and find the cause of their illness: ‘was I drinking too much, oh I smoked in my 20s, you know you do kind of look back and kind of start feeling guilty then about. And then start feeling guilty about things you’re doing now’ (P1:FG1). Unable to explain why they developed cancer, participants were intent on changing their lifestyle to reduce the likelihood of reoccurrence. However, without support or guidance, and ‘little emphasis’ put on activity levels (P5; FG4), participants felt stressed, anxious, and fearful in relation to their post-treatment lifestyle; ‘the mental side, so it was just a domino effect of kind of a negativity, just because of the lack of knowledge’ (P2:FG2).
The COVID-19 pandemic was also the source of fear for some participants. They explained their sense of isolation resulted in feelings of loneliness; ‘could it be the fact that we have covid at the moment and you can’t go out and see people?’ (P3; FG1). As vaccinations were rolled out and restrictions were lifted, participants were anxious about their immunity status: ‘I just don’t trust my immunity and there isn’t a lot of clarity either on people of what stage they’re at in their treatment, how many months after or how at risk they are or. So that definitely brings anxiety for me at the minute’ (P2:FG8).
What exercise should I be doing
Participants discussed their uncertainty on what exercise was suitable for them. The sub-theme ‘what exercise should I be doing’ captures the lack of support, encouragement, and guidance participants experienced post-treatment during their quest to utilize exercise to maximize their recovery from cancer.
Participants were acutely aware of the positive impact exercise could play in their recovery from cancer; ‘exercise is so important’ (P2:FG1). They discussed how health care professionals promoted exercise as a tool to improve survivorship outcomes; ‘the nurses had said to me exercise is very important for reducing recurrence’ (P2; FG4) but expressed frustration with the vague nature of guidance given and inappropriate support or encouragement; ‘there was no one out there to help or to know how to go about doing this exercise, how much or I felt I needed guidance’ (P4; FG6); ‘would’ve been helpful if there had been you know some kind of guidance as to what you could or couldn’t do. Or what things were more beneficial than others’ (P4; FG3).
Feelings of isolation were expressed by participants with pre-diagnosis inactivity. They were being advised to change their lifestyle but left without appropriate support or encouragement: ‘I couldn’t do the kind of exercise I needed to do […] I had a fear of going for a walk with somebody. Because I couldn’t keep up and I was walking like somebody who was twenty years older than I am’ (P2.FG3). The enduring threat of cancer recurrence also added to this sense of isolation.
Fear of doing more damage than good when exercising was a major concern for them: ‘it’s the fear of doing yourself more damage…the fear, you’re told oh protect the arm, mind the arm’ (P5:FG6). A lack of guidance combined with treatment side effects, such as fatigue, forced them to choose to refrain from exercise: ‘the physical (side-effects) end of it for me was, made it quite difficult to exercise’ (P1:FG3).
In addition, lack of guidance resulted in feelings of regret and anger; ‘then I injured myself in the gym. Then I said no, forget about it. So yeah I stopped to be honest with you because I was doing more harm than good’ (P1: FG7). This was also an issue for those who had been regularly active prior to their cancer diagnosis. One participant was ‘very fit’ before diagnosis and had engaged in ‘high intensity training classes’ but now ‘couldn’t even attempt’ such level because of ‘head spinning’ and ‘dizziness’ (P6; FG4).
Even younger, fit participants were cautious and felt frustrated by a lack of support and guidance; ‘you have to be careful about what kind of exercises you’re going to do…even sort of trying to get clarity about that they [HC professionals] were a bit like, why are you asking that question. And I was like, well you know in terms of going back to doing exercise and you know if I’m going to go to the gym. Or even just you know I don’t know carrying heavy groceries or whatever. Like what’s okay and what can I do and what can I not do’ (P1; FG3).
Theme: everybody is different
The second theme ‘everybody is different’ captures the ongoing side effects which impacted participants’ wellbeing and ability to exercise. They emphasized the unique needs of each person living with cancer, depending on their cancer and its treatment, and the importance of tailor-made instructions and support within a personalised exercise program (Table 3).
A variety of symptoms were experienced, some only experienced by a few participants and others experienced by many. The less common symptoms included cording (axillary web syndrome), pain, fibromyalgia, lymphedema, noise sensitivity, dental issues, systemic thrush, psoriasis flare up, nausea and vomiting, weight loss, and dry eyes.
Fatigue and brain fog
Cancer-related fatigue (CRF) was the most commonly mentioned physical side effect highlighted by participants. CRF diminished their ability to carry out everyday tasks, such as housekeeping; ‘I’m wrecked after a little bit of housework now these days, if I actually get to do it. [P1: FG5].
They wanted to exercise but were ‘pretty exhausted…My head wants to do everything but my body just won’t allow it’ (P2:FG8). CRF impacted their lives and their motivation to exercise; ‘you’re not in the mood and not in the form to be exercising’ (P4; FG4); ‘my body just feels like heavy and weak and like there isn’t a hope I’d be able to exercise today’ (P2; FG7). The constant nature of CRF prompted participants to ruminate and worry if they would ever return to their pre-illness energy levels. ‘I’ve had other bits and pieces but yeah that’s the one that’s kind of lingering’ (P6: FG6).
Participants commonly referenced their experience of CRF with cognitive fatigue. They used the terms ‘brain fog’ or ‘chemo brain’ and described how it negatively affected their ability to multitask or concentrate. Some also highlighted a decline in memory and reduced thought processes; ‘my cognitive function, I think has been badly affected, certainly going back into a school setting, multi-tasking was extremely difficult’ (P4; FG2). ‘I’ve gone completely more scatty than I was, I have to write everything down’ (P1: FG4). Participants referred to the psychological toll of constantly feeling fatigued. They were downhearted and despondent due to their inability to return to pre-illness energy levels: ‘[…] the fatigue and the brain fog and everything else, it’s just a nightmare (P5:FG6)’.
Nerve pain and neuropathy
Nerve pain as a consequence of breast cancer surgery and neuropathy from chemotherapy were experienced by some participants. Nerve pain was described as ‘very scary’ (P3; FG1) and a ‘severe disability (P5: FG1) affecting movement in shoulder and arm activities. At times, it was necessary to ‘tap’ the arm so the feeling would ‘come back’ (P5; FG3).
Numbness and pins and needles were experienced with feet ‘changed in appearance’ and extreme ‘difficulty’ in walking (P1; FG7). Fine motor movement was also affected; ‘I lost the pincher ability’ (P2; FG6) and holding items was a problem; ‘I can’t really hold anything here. I mean you know most of the stuff you need both of your arms and your hands, those are the things I can’t really do anymore’ [P5: FG3].
Menopausal symptoms
Menopausal symptoms were experienced related to chemotherapy and the anti-hormone treatment, tamoxifen. These symptoms were described as ‘more problematic’ in young women (P4; FG1) was ‘probably one of the hardest things’ (P2;FG1) to deal with post-treatment. Joint pain, ‘bone pain and aches’ (P4; FG4) affected participants’ ability to exercise and maintain a healthy weight; ‘I’ve gained like over 2 ½ stone…the joint pain was so bad it was inhibiting me from exercising’. (P3;FG4). Giving up tamoxifen was decided as the only option ‘for quality of life and being able to exercise’ (P3;FG4).
Weight gain was a common issue discussed and affected participants’ ability to exercise; ‘I’ve put on a lot of weight that’s causing the fitness issues I have at the moment’ (P2; FG3). Weight gain was hard to lose, even with engagement with exercise and a healthy approach to diet; ‘even with all the exercise, the walking, the rowing, I’m not able to get rid [of the weight]. I cook my food from scratch’ (P5;FG3). Hot flushes were also very troublesome with regular experiences of being ‘completely soaked’ (P2; FG7) and disturbed sleep at night which impacted on fatigue.
Theme: personalised exercise program
This final theme reflected participants’ view on ‘everybody being different’ and the need for individualised exercise programs (Table 4).
Participants were knowledgeable on the wider benefits of exercise. They highlighted its usefulness in alleviating anxiety and stress, reducing the risk of lymphedema, improving cognitive function, and improving symptoms of fatigue. They acknowledged the uniqueness of each cancer survivor with their varying levels of competencies in relation to exercise and activity and the side effects that impact exercise engagement; ‘everybody is different, their levels of fitness are different. And as you say if they’ve had different surgeries and that, how debilitated they are after the surgery […] I think we have to give patients, you know instead of just saying exercise is important, we have to kind of get them assessed and see what exercise is appropriate for them’ (P4: FG1).
For all these reasons, participants highlighted that cancer survivors need personalised exercise programs tailored to each individual’s ability and lifestyle. For those who had already started the personalised exercise program, feelings of success were shared. ‘I’ve my own notes written and so that I can actually do this’ (P1; FG7). These participants were motivated and felt accountable to achieve their best level of fitness in response to the different supports available to them on the program. ‘I can talk to somebody if the programme isn’t going well […] I’m doing something, because I’m, maybe its accountability, I don’t know. But it’s knowing somebody is there to talk to about the programme, if you need to talk about it’ (P2:FG3).
Participants utilized various forms of social media such as WhatsApp and Zoom to stay in touch with their exercise physiologist. This allowed them to exercise at home, at their convenience, whilst knowing support was always available. ‘So it wasn’t just like a one for all program, which was brilliant. So yeah he [exercise physiologist] took everything into consideration and came up with a fantastic plan (P2: FG8). These participants also stressed the need for any exercise program to progress gradually; ‘he [exercise physiologist] would be the one who would say to you start slow, we build up’ (P1; FG8). ‘I’ve really enjoyed the last few weeks. Because it kind of finally feels like I’m getting back a little bit of that fitness that I’ve lost. And I feel myself progressing’ (P1:FG3). This was a crucial aspect of the personalised program, as it allowed participants who may previously have been inactive, to gain confidence and incentive from achieving their achievable exercise target.
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