Results

Fourteen cancer survivors participated, these being six men and eight women of European descent, aged 42-75 years, in remission from head and neck, female breast, bowel and prostate cancers. All the survivors had completed a suite of diagnostic and treatment services in their home city, a centre with a population of 400,000 serviced by a full range of primary, secondary and tertiary health services. Our analysis of their experiences exposed a pattern of responses that aligned into positive and negative clusters from which two central themes emerged: ‘connectedness’ and ‘disconnectedness’ that were linked with ‘living well’ and ‘suffering’.

‘I am living well’: connection to self, others and context

The analysis identified that the following attributes were important aspects of enjoying life: being positive, fortunate, accepting, grateful, certain, altruistic, independent, personally evolved, comfortable with self-image and bodily changes, feeling well and strong, being loved and supported personally, well informed and supported in care, and having access to fresh air and outside space. The essence of enjoying life therefore seemed to involve a sense of being connected to self, others and to context (be it the home, social and professional networks, places where care was provided and the people providing care). Being connected to ‘self’ involved physical and psychological aspects. Physical aspects included feeling comfortable with body changes and self-image and being well or strong.
My body has changed. It forced me to try new looks that I wouldn’t have had the courage to do before. It’s been a lot of fun. (P3)
Psychological attitudes related to being positive, optimistic, certain, accepting, confident, independent, resilient and looking outwards.
It’s the power of positive thinking, and for me it was always there.” “All those people that have gone down the road of radiotherapy or… chemo or whatever, some of them have suffered badly along the way… they’ve lost their hair, they’ve lost this, they’ve lost that. They actually have to dig deep. They really have to. And I guess for some of them if it was never in their persona to be like that, they’re going to have a very difficult time. (P6)
I had a really, really, really good positive mental attitude, like massively and the fact that there was no point worrying about it. (P11)
I never doubted, I never had any doubt or disbelief in myself. (P4)
I am a coper, absolutely. (P18)
I woke up after my day of operation the next day I thought that’s it, that’s gone. And I think I have not deviated off that path ever since. (P4)
Having confidence involved surpassing their own expectations and those of others around them in coping with the challenges of the condition. New strengths and previously unknown resilience and abilities to find support enabled them to withstand the pressures and adversities of the cancer journey.
I felt I had my friends to get together with and talk about it and I did. (P18)
Sometimes it’s harder for your partner and your family than it is for you. Because you’ve got it, you’ve got to deal with it. You love all of their support but they can’t reach in and fix it. (P11)
Looking outward comprised being grateful, fortunate, and lucky.
The more people you tell, the more people know, the more support you’ve got. Then more chance you’ve got of succeeding. (P11)
I think it’s [cancer] made me a nicer person, a kinder person. Certainly, more compassionate…I will go the extra mile and help somebody… I guess that’s my philosophy: I do it because I can. (P6)
I tell people this, if you said, ‘I’ll give you a million bucks so you don’t have to have cancer’ I’d say, ‘you can keep the million bucks because it’s an experience you can’t buy’. It’s an experience that not everyone gets to go through and it gives you a whole different perspective on the world. (P11).
We were lucky it got picked up when it did. (P1)
Being connected to others meant feeling loved, supported, personally evolved, and altruistic. It included acknowledging that those providing support faced their own challenges through the cancer journey and that survivors had a responsibility to support them.
I was going through chemo for six months and I had to drive myself there because he [husband] couldn’t. The kids still had all the same things on in the evenings and I had to drive the kids there every night. Even after I’d had chemo. (P18)
It has been just as hard on her to keep her spirits up and try and buoy me up and I’m trying to stay strong for her, so we’re trying to stay strong for each other. (P1)
Being connected to context meant feeling comfortable with healthcare settings and the professionals who worked in them. This, in turn, meant feeling supported by those providing professional and lay care, being well informed and able to seek help and experiencing feelings of indebtedness, gratitude, and altruism.
I enjoy the physical aspect of the farming and I need that. I need to do that for my wellness… I’d rather be doing positive things and out in the fresh air. (P6)
Our contribution to the support group gives us a sense of gratitude and value. (P1)
I needed to give something back. (P11)
Now if I go along [to the support group] I go to see if I can support somebody. (P4)
That’s where we’re ok if we can advocate…Because, you know, you can guarantee we’re not the only ones in this situation. (P1).
It also involved being connected to communities, professional and social groups and the environment. ‘Living well’ was underpinned by a strong sense of connectedness to self, others and context.

‘I am suffering’: disconnection from self, others and context

Our analysis found that the essence of suffering meant being disconnected from self (physically and psychologically), others and context. Disconnection with the physical ‘self’ meant being in pain or uncomfortable, less functional, dependent, and feelings of loss related to self-image.
Every day I still have the pills and aches and pains and I feel like an old nana at the end of the day, I’m an 80-year-old and I can’t walk. I’m in so much agony with the stiffness of my joints without having any oestrogen in my body. (P7).
I look at my face and I don’t look the way I used to. I lost an enormous amount of face tissue. (P4)
Psychological disconnection from the ‘self’ meant being frightened, uncertain, insecure, sad, frustrated, angry, dependent, less mentally focused and mentally dull, and stressed.
…..lying in wait….. It could be a time bomb waiting to go boom. (P14).
Because I didn’t want it to come back. And that was another thing for me, because of where I work I was always thinking it was coming back. And I was really paranoid about it. (P3)
I just cried and cried. And yes, that was Sam and my oncologist said oh Sarah are you having a bad day? And I said yes I can’t stop crying. (P2)
So my mood’s not been good the last three years…. (P14)
I was so pee’d off about it and depressed about it and started to get really down about it. (P2)
The idea that positive treatment benefits would not eventuate was prevalent as was the view that the end of cancer treatment did not necessarily signify the end of the cancer journey.
Having that last lot of chemo, it’s like where is your life going from here? Are you back in six months because it hasn’t worked? Are you gone for good? Are you back in a week because it hasn’t worked? You know, where are you? (P3)
I thought hey, ooh, we’re fixed. Yeah right…It’s the legacy of it [cancer], you know, the cancer’s that small but the legacy’s that big. Problems and the ongoing things. (P2)
Being disconnected from others meant feeling isolated, unsupported, misunderstood, stigmatised and helpless in the face of family suffering and stress. There was little to be gained from sharing their story with others who had not gone through the same experience.
You tell everyone you’re fixed, you tell your family and they all sighed with relief and go great and they all move on. So they’re not focusing on you either. So it’s like …mmm, where am I? Am I ok? (P7)
Others you just didn’t hear from because they had their own issues about whether you are going to survive or not survive and whether it will affect them and they don’t want to know. (P14)
The way I usually deal with them [meltdowns] is to isolate myself. I’ll often leave the family down here and go upstairs and move away from them. (P18)
I felt very alone….. (P2).
Being disconnected from context meant being ‘cut loose’, insecure, afraid, inadequately informed, unsupported, being a nuisance, and not trusting a health system that could be self-interested and capricious; for example, being labelled a nuisance by the health system could undermine access to future care.
I thought to myself now they said they’d do ….follow up, and six months… that came and went so I emailed my cancer care nurse. She said you should have been having three monthly blood tests…I don’t know who was meant to organise that. (P15)
There was no consultation back and there was sort of no follow up process. (P18).
I wouldn’t say its [support group] actually helped me….. (P4)
Support groups aren’t great. They don’t help much and just load it onto the people who are there. (P14)
I’ve got too much of my own stuff to deal with to think about others…(P3)
There’s a lot going through your mind and it’s an emotional time so you’re not always listening or asking the questions you want to ask because a. you don’t want to be embarrassed, b. you don’t want to believe you could be sick again. So sometimes you don’t ask those questions. (P7)
Disconnection meant ‘suffering’. The less connected the person, the more likely their experiences and opportunities would not meet expectations resulting in the absence of a positive lived experience.