2. Materials and Methods
3.1. Receiving a Diagnosis of Esophageal Cancer
3.1.1. Initial Reaction to a Diagnosis of Esophageal Cancer
R23: The first time I met [surgeon], he said to me, ‘You’re very sick. You’re going to have to have the operation.’ And I thought, ‘Ah Jesus [irritated tone], what’s this now?’
R08: You are, plain and simple, at your lowest. Your whole world changes.
R40: I didn’t think about people with cancer, or if they got cancer, or that it shortened their life. But when he took me in and he explained it to me, I thought, ‘This is a whole new ball game here.’
R30: If you go on the Internet, which nobody should do but which everybody does—and I did too—you didn’t see very comforting statistics there, you know? It was… frightening, actually.
R08: I’d have been afraid to lift that [points to tea tray] after I was told. I’d be afraid, saying, ‘Should I be doing this? Should I be doing that?’ You become very cagey, you know?
3.1.2. Coping with the Reactions of Family and Friends to the Diagnosis
R40: What I found, in family as well as in friends, is that a lot of people can’t handle the word ‘cancer’. They skirt around it; they treat you as if you are a bloody invalid waiting to go into the box [coffin]!
R33: The whole family was around and all of them were anxious, and when they were told, the first thing my brother said was, ‘She doesn’t meet the profile! How come they picked on her?!’
3.1.3. Strategies for Coping with a Cancer Diagnosis
R39: That was the danger—to fall into feeling sorry for yourself. But you have to get up, keep going, get on with it, you know?
3.2. Navigating Treatment for Esophageal Cancer
3.2.1. Accepting That There Are Tough Times Ahead
R30: You knew they were going to pull your organs around. This operation—it’s as if they take your organs and put them in a bag and shove them up and pour them back into you, so you couldn’t have expected an easy time of it.
R36: I try to be light-hearted—I finds that helps. At home, though, the missus would say to me, ‘You’re very flippant about that.’ And I’d say, ‘No, that’s just the way I deal with it,’ you know?
R41: I wasn’t interested in anybody coming to see me at the time I was going through it. And I made that very clear. I said, ‘I don’t want to entertain anybody that is an extra effort for me.’ It’s a time where you have to mind yourself, and if someone is your friend, they’ll understand that.
3.2.2. Challenging to Engage with Family and Friends during Treatment
R40: When I went home, after about a week, I said, ‘Look, I’ll be back in bloody hospital next week, or else I’ll be looking to go back—I can’t cope with this.’ There were people coming in the whole time.
R40: People were coming up to me when I looked dead, saying—’You’re looking great, you’re fantastic.’ And it used to irritate me, because I knew I was looking dead and I felt half-dead!
R36: I met a fellow I worked with on the bus. What was the first thing he said to me? He said, ‘I thought you were dead.’ Well, I won’t tell you what I thought to myself, but it really shocked me when he said that. I got a big setback—it took me a while to get over that.
3.3. Early Stages of Recovery after Treatment
3.3.1. Feeling Disconnected from “Normal” Life
R33: I mean, when I came out from the operation, oh my God, for about three months I did nothing. I’d sit in my chair, and then I’d walk into the kitchen and look around the kitchen—I didn’t even recognize it—and walk back to my chair. Those were my days for months.
R08: After everything you’ve been through, your confidence about getting back to normal is shattered.
R23: After the operation, I’d be wondering, ‘Would I be able to do the housework like before, do basic things like keeping the house clean?’
R39: Learning to eat again had the biggest impact. I had to learn to eat more slowly, because if I didn’t, it would kill you with the pain—horrendous, terrible pain that would take about an hour to clear up.
R11: After this operation, everything changes. You’re saying, ‘There’s pain—what’s that? Should that be there?’ But you can’t be running to the GP every time, you know?
3.3.2. Fatigue Impeded the Return to Daily Activities
R08: When I was told, ‘You’ll feel a bit of fatigue,’ you automatically think, ‘Ah yeah, so I’ll feel a bit tired.’ But fatigue is totally different—you have to explain that it’s a total knackered—all over. And you haven’t done anything, but suddenly you’re knackered and you don’t know why. And it plays on your mind, where you’re saying, ‘What’s gone wrong now that I’m suddenly like this?’
R30: When you’ve those days where you feel physically weak, it’s not necessarily about other people’s view of you—but it’s your view of yourself that’s weaker.
3.4. Later Stages of Recovery after Treatment for Esophageal Cancer
3.4.1. Difficulty Establishing a New Routine
R33: I remember I couldn’t get back into the swing of things, just not being in the swing of things.
R08: You’re wondering, ‘Is this the right thing to do? Should I be doing this? Should I not be doing this?’ Because you don’t have a clear-cut thing; even though people give you advice, they can’t cover every single thing of every person’s activity, because every person is different.
R41: With regard to driving, it’s only starting back with me—whereas during the postoperative period, I just wouldn’t do it because I was afraid of myself from a safety point-of-view and a lack of confidence.
3.4.2. Well-Meaning Family and Friends Inhibited Recovery
R09: There’s so many people that tell you, ‘Sit down and don’t do anything,’ like, ‘Take it easy, you’re after being through a lot.’ And it’s so easy to buy into that and go down that road of self-pity, to a certain extent, you know?
R40: It’s to do with my other half—she’s over-protective. If I take the sweeping brush out to sweep the garden path, she comes out and takes it off me, and, I do sometimes think, ‘Jaysus, I’m never going to get better.’ Like, I want to do more for myself.
R40: She’ll say, ‘I’m going into town—do you want to come?’ and I say, ‘No, you go ahead,’ and as soon as she’s gone, the sweeping brush is out and I’m in the garden!
R23: My daughter kept saying, ‘I’ll do the housework’ and I kept saying, ‘No—it’s my responsibility. I want to do it.’
R08: People won’t ask you to do things because they say, ‘We don’t want to ask you.’ And that makes you feel worse because now you feel different to everybody else. You’re desperate to feel normal after it. You know you’ll never be normal again—not the same as you were before—but to the same extent you want to get back as much as you can—to be where you aren’t treated differently to everybody else all of the time.
3.4.3. Identifying a Need for Support and Education
R39: I had never met anyone with esophagus cancer, before this [group].
R01: There should be more support groups. It’s nice to be able to chat to other people—it makes you feel normal—the way you can get past that small talk because somebody knows exactly what you’re talking about.
R33: When you go down to the clinic once a year, you’re just in and out.
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Stage at Diagnosis||Neoadjuvant Treatment||Adjuvant Treatment||Type of|
|Time Since Surgery(Months)||Employment Status|
|RESTORE01||F||54||Tis N0 M0||Nil||Nil||Transhiatal||62||Employed full-time|
|RESTORE02||M||74||T3 N1 M0||CT + RT (CROSS)||Nil||2-stage||30||Retired|
|RESTORE04||M||74||T1 N0 M0||Nil||Nil||Transhiatal||23||Retired|
|RESTORE07||M||81||T1 N0 M0||Nil||Nil||Transhiatal||44||Retired|
|RESTORE08||M||65||T3 N0 M0||CT + RT (CROSS)||Nil||2-stage||10||Employed part-time|
|RESTORE09||M||74||T3 N1 M0||CT (MAGIC)||Nil||Not available||35||Retired|
|RESTORE11||M||61||T1 N0 M0||Nil||Nil||Transhiatal||23||Retired|
|RESTORE13||F||63||T1 N0 M0||Nil||Nil||3-stage||37||Retired|
|RESTORE16||M||57||T2 N0 M0||Nil||Nil||2-stage||12||Employed part-time|
|RESTORE23||M||71||T1 N0 M0||Nil||Nil||Not available||17||Retired|
|RESTORE26||M||58||T3 N1 M0||CT (MAGIC)||CT||Transhiatal||8||Employed full-time|
|RESTORE30||M||63||Tis N0 M0||Nil||Nil||2-stage||10||Employed full-time|
|RESTORE31||M||74||T3 N1 M0||CT + RT||Nil||2-stage||36||Retired|
|RESTORE33||F||68||T3 N1 M0||CT + RT (CROSS)||Nil||Transhiatal||42||Retired|
|RESTORE36||M||63||T1 N0 M0||Nil||Nil||Transhiatal||8||Retired|
|RESTORE39||M||74||T3 N2 M0||CT + RT (CROSS)||Nil||2-stage||9||Employed part-time|
|RESTORE40||M||80||T2 N0 M0||Nil||Nil||2-stage||16||Semi-retired|
|RESTORE41||F||67||T1 N1 M0||CT||CT||3-stage||7||Retired|
|Study ID||Fatigue||Sleep Quality||Muscle Soreness||Stress Levels||Mood|
|RESTORE01||Normal||Good||Normal||Normal||Less interested in others/activities|
|RESTORE02||Normal||Difficulty falling asleep||Normal||Normal||Generally good mood|
|RESTORE04||Normal||Good||Normal||Normal||Generally good mood|
|RESTORE07||More tired than normal||Good||Normal||Normal||Generally good mood|
|RESTORE08||More tired than normal||Good||Feeling great||Relaxed||Very positive mood|
|RESTORE09||Normal||Good||Normal||Normal||Generally good mood|
|RESTORE11||Always tired||Restless sleep||Increase in soreness||Feeling stressed||More snappiness at others|
|RESTORE13||Always tired||Restless sleep||Very sore||Feeling stressed||Less interested in others/activities|
|RESTORE16||More tired than normal||Good||Increase in soreness||Feeling stressed||Less interested in others/activities|
|RESTORE23||Normal||Very restful||Feeling good||Feeling stressed||Generally good mood|
|RESTORE26||Normal||Good||Normal||Relaxed||Generally good mood|
|RESTORE30||Normal||Good||Normal||Normal||More snappiness at others|
|RESTORE31||Always tired||Good||Feeling good||Normal||Less interested in others/activities|
|RESTORE36||More tired than normal||Good||Normal||Feeling stressed||Less interested in others/activities|
|RESTORE39||Normal||Restless sleep||Normal||Normal||Generally good mood|
|RESTORE40||Normal||Good||Normal||Very relaxed||Generally good mood|
|RESTORE41||More tired than normal||Restless sleep||Increase in soreness||Normal||Less interested in others/activities|
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