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.