Table 2 Theme: Cast adrift with no direction. Illustrative quotations

Everything revolves around treatment

Everything revolves around your treatment. But also all of the people that have supported you like your friends, your family and everybody. They’re all there, all the time, while you’re going through your treatment. And the minute you’re finished your treatment it’s not that they completely disappear. But they, everybody wants to go back to being normal….So you’re kind of left you know there’s nothing.[P2: FG3]

[…] once you’ve finished your cancer journey you seem to be left out on a limb so I find yeah I really struggled […] I think yeah there’s definitely a lack of information you know everywhere once you finish your cancer journey. [P7: FG4]

You’re dealt with by the professionals to get, you know to get rid of the cancer, give us the treatment, they’re excellent at what they do […] But it’s just you’re really dependent on them at that time […] when you leave them and you’re going back out into the world as such. That piece is missing. [P4: FG4]

“I was chucked into a boat without any oars and shoved out into the ocean” (P9; FG6).

You’re left kind of to your own devices, you feel quite isolated and alone. [P6: FG4]

Panic and fear

I’m just praying the days away to be honest, to get to next week. To feel a little bit better. You know you at a certain level of, before you start all of this but each step the way its 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 [P4: FG5]

I think the biggest fear, is the fear of recurrence and the fear of any little twinge, ache or pain is that something coming back ..[P3: FG4]

I ended up in hospital a couple of weeks ago in agonising pain and straight away I had cancer back, it was in my bones, it was somewhere else, because your head goes there. […] Because straight away any kind of physical pain and you think it’s back, it’s here […] you become kind of hyper conscious and hyper responsive to every single feeling in your body. And I think that does, it’s very distracting, it’s all consuming at times [P5: FG6]

I’m 6 years on now but I still obviously struggle with fear of reoccurrence […] I suffered really bad with depression when everything hit me afterwards […] [P3: FG4]

I thought oh my god definitely going through the treatment would be the worst part but I think I’ve nearly found out that the post treatment [..] was just, for me I found it really difficult, you know what I mean, I was struggling. [P3: FG5]

But like you know when you are struggling daily and whatever people just don’t get it […] you just get really withered with life […] when you are feeling so unwell and you can’t do things and you are pulled down, it’s very, very hard [..] [P2: FG7]

What exercise should I be doing

I certainly felt that there was just no support in any shape or form. And I’m not talking like emotional support or mental support. I’m just talking the physical, what should I be doing […] I wasn’t doing anything [P13: FG8]

[…] when I was having the radiation the radiation oncologist said if you could exercise that would help with the fatigue and I was thinking, he said I know you might think that’s impossible and I was thinking it is impossible. But 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 […] [P12: FG6]

I just feel in my experience there was such a lack of information around exercises, even the nurses had said to me exercise is very important for reducing recurrence etc, I was just still sent off on my own [P3: FG4]

[…] when I finished [chemotherapy] and I asked, I actually asked where do I go for support and help about exercise, diet to shift the weight I’d gained through chemo etc, etc, etc. And the nurse turned around, [..] She said we only do the chemo and we only deal with the chemo you know […] [P9: FG6]

I suppose it was walking that I initially started with. But I suppose it maybe would’ve been helpful if there had been you know some kind of guidance as to what you could or couldn’t do. […]And there was very little of that. [P1; FG3]

I asked my oncologist, you know finishing up [treatment] what’s the dos and don’ts and exercise was, she emphasised very strongly that it was something that you should do, yeah. But like that she quoted the WHO guidelines of, isn’t it 30, what is it 150 minutes a week […] but it literally was tiddle off now and do that yourself. I would have absolutely loved some kind of support like that, absolutely loved it. [P10: FG1]

[…] inside [hospital] they told me exercise, exercise, so my husband was alive at the time and I had a personal trainer and I was paying this fella 45 euro an hour I was going about three times a week. And sure I was going to him and I was going to the physiotherapist So then I tried the gym and 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]