Table 3 Theme: Everybody is different. Illustrative quotations

Fatigue and brain fog

[…] your wellbeing is impacted because you’re not in the mood and not in the form to be exercising, moving, you know you’re just exhausted you know and you’re tired and you’re fatigued and you’re wanting to feel the way you did pre all of this but you’re not feeling it. [P6: FG4]

[…] even from the beginning of diagnoses to going through treatment to getting into a post treatment stage, the fatigue is just horrendous […]Like even housework, I’m wrecked after a little bit of housework now these days, if I actually get to do it. [P4: FG5]

I’m absolutely floored today I’m actually struggling really bad with fatigue today and just like heavy eyes and dull headache [P14: FG7]

[…] the fatigue is still there, the joint pain is still there, [...] I got into a place where it was like I know I need to do this [exercise] in order to feel better but in order to feel better I don’t feel I’m capable of doing this. And it was a vicious circle […]. [P13: FG8]

[…] cognitive, fatigue, I suppose it would go into fatigue but certainly my cognitive function, I think has been badly affected, certainly going back into a school setting, multi-tasking was extremely difficult. White noise, massive issue for me [P4: FG2]

My ability to put thoughts together, my mind is really slow, extremely. And on the Tamoxifen was really, I couldn’t put a thought process together [P2: FG5]

Nerve pain and neuropathy

I remember the first time I experienced nerve pain, it scared me. Like it was very, very scary, it was very painful. [P3: FG1]

So first of all I was in nerve pain, like severe nerve pain from when I came out of theatre and I ended up having nerve pain for 6 months afterwards. I had severe disability in my shoulder, like I couldn’t move, I was having nerve spasms, you know muscle tightness [P5: FG1]

[…] there was all this weird nerve pain kind of going around into my shoulder and I got a bit of cording under my arm [P1: FG1]

I suppose the biggest side effect that I’m struggling with and my treatment doesn’t end now till November but it’s the neuropathy. [..]I very much had it in my face and my hands and my feet. And just walking on carpet is akin to walking on broken glass. And that hasn’t quite changed even though an awful lot has returned to my fingers thank goodness. [P2: FG6]

I have peripheral neuropathy, I mean I could keep on going with the side effects that I’ve had from it. My feet have completely changed position, they’ve changed in appearance. So it is extremely difficult to walk. And it’s all related back to the chemotherapy. Which is better the cure or the drug, you know, it’s hard to tell. [P1: FG7]

Menopausal symptoms

Not only hot flushes, vaginal dryness, mood changes, loss of libido, all those things which are not really, I think chemotherapy units are geared up to give you chemo and deal with neutropenia, nausea and vomiting. And I think there is definitely a deficit there dealing with menopausal symptoms in younger women. All women but particularly in younger women, it’s more problematic. [P4: FG1]

I probably found the original, the kind of hot flushes, the hormonal treatments after chemo, that was probably one of the hardest things […] your sleep is off and you’re dealing with I suppose a lot of other stuff and suddenly you’re feeling like this kind of menopausal person, like 10 years ahead of what you ever anticipating to be like that. [P2: FG1]

My biggest issue is the weight gain, I’ve gained like over 2 ½ stone. I know I was put into full blown menopause after my treatment but it totally was like unexpected […] [P3: FG4]

I went into a very radical menopause when I started my chemotherapy. And I found that very isolating because no one of my age at the time was going through that and there was no support for that or there wasn’t even any information, nobody told me that this perhaps could happen to me. [P4: FG4]

I had phenomenally aching joints, as in all over my body. And the physio said it is like arthritis. And I still have it, particularly in my feet and hands. We don’t know if its from the treatment or if it’s from, you know I’d be going through severe menopause now, we don’t know what it is. So again that was one I really struggled with […] I get a lot of hot sweats now and they really keep me awake at night actually […] yeah the nights, I wake up a lot at night with hot sweats and things like that. [P1: FG9]