Academic journal article Contemporary Nurse : a Journal for the Australian Nursing Profession

Marking Time: The Temporal Experience of Gastrointestinal Cancer

Academic journal article Contemporary Nurse : a Journal for the Australian Nursing Profession

Marking Time: The Temporal Experience of Gastrointestinal Cancer

Article excerpt

This paper explores the experience and management of bowel, pancreatic and oesophageal cancer. Bowel cancer is the second most common cancer in New South Wales (NSW), Australia. Pancreatic cancer is the eleventh most common cancer diagnosed, while oesophageal cancer is ranked nineteenth (Cancer Institute NSW, 2007a, 2007b, 2007c). This paper aims to use fresh and vivid accounts of the diagnosis and surgical management of gastrointestinal cancer as experienced and embodied within the life-world of patients and families. It is hoped this will lead to new understandings that will inform meaningful improvements in patient care.

BACKGROUND

A number of researchers have used qualitative methodologies to explore the experience of living with gastrointestinal cancer. A diagnosis of colorectal or oesophageal cancer causes disruption in the ill person and caregiver's life (Andreassen, Randers, Näslund, Stockeld, & Mattiasson, 2006; Houldin, 2007) and the pre-operative period is characterised by fear, questions, isolation and uncertainty (Pascal & Endacott, 2010; Taylor, 2001; Worster & Holmes, 2008). Colorectal patients, particularly those from rural areas, may experience a number of barriers to specialist referral (Bain & Campbell, 2000). Subsequent delays of investigations and timely communication of test results leads to greater anxiety (Bain, Campbell, Ritchie, & Cassidy, 2002; Thurston, Perry, & Kirby, 2003). In the early postoperative period patients struggle with loss of dignity and body control (Jonsson, Stenberg, & Frisman, 2010; Taylor, Richardson, & Cowley, 2010; Worster & Holmes, 2009).

People with oesophageal cancer experience a myriad of challenges to their sense of self (Clarke, McCorry, & Dempster, 2010). Dysphagia and fatigue shape the experience of oesophageal cancer (Andreassen et al., 2006) and the illness affects the whole family (Andreassen, Randers, Nasland, Styockeld, & Mattiasson, 2005). People tend to resign themselves to the risks of surgery, nurturing beliefs around surgical cure, and idealised medical expertise (McKneally & Martin, 2000). Surgery for oesophageal cancer changes the embodied sensations of hunger, satiety, swallowing, taste, and smell, rendering the previously taken-for-granted experience of eating alien (Wainwright, Donovan, Kavadas, Cramer, & Blazeby, 2007). Little qualitative work is published in the field of pancreatic surgery, but it is known patients with pancreatic cancer suffer high rates of major depression (Mayr & Schmid, 2010), and where surgery is indicated, it improves both survival and quality of life (Crippa et al., 2008).

Even though there may be a curative intent to surgery, the greatest source of anxiety for people with gastrointestinal cancer is fear of the cancers recurrence (Worster & Holmes, 2009), and this is also true for people experiencing other types of cancer (Pascal, 2010). According to the Cancer Institute of NSW, the combined 5 year relative survival for males and females diagnosed with oesophageal cancer is 17%, while pancreatic cancer is less than 10%. The 5 year survival rate for colorectal cancer is reported to be 65% for males and 66% for females (Cancer Institute NSW, 2010).

METHODS

This paper employs the writings of Heidegger, not only to provide a research methodology, but also a philosophical framework that guides a way of understanding being with gastrointestinal cancer. Drawing on Heidegger's philosophy allows an existential and ontological perspective that frames experience around the condition of human existence and being. Existentialism considers an individual's emotions, actions, responsibilities, and thoughts in the creation of individual meanings (Macquarrie, 1972).

Historically, biomedical research methods are aligned with the philosophy of René Descartes which sees the mind as being thoroughly distinct from the physiological functions of the body (Descartes, 1640/1904, p. 273). This concept of Cartesian dualism gives no space to the relevance of the psychological impact of illness and invasive therapies and their meanings to an individual. The alternative approach of Phenomenology emerged with the philosophy of Husserl (1913). Husserl sought new, rigorous scientific methods that could strip away what we take for granted and believe about things in the world, to reveal the fundamental essence of a phenomenon (Husserl, 1931/1960, pp. 10-12). In his later works, Husserl (1936/1970, 1931/1960) presented the 'life-world' as a place where a man, with both a body and soul lives the life of the world with other men. He believed that scientific judgements should be grounded in such evidence as 'experiences' of men in their world.

The existential philosophy of Martin Heidegger (1889-1976) was built on Husserl's ideas around living within a world and sharing common meanings. However Heidegger did not believe we could separate ourselves from our existing understandings and beliefs. Instead he saw the very nature of our beingin- the-world as shaped by those things in our lifeworld that we 'care' about. The Heideggerian notion of 'care' means being drawn towards things in your world of personal concern that require attention (Heidegger, 1927/1996, p. 83).

Heideggerian hermeneutic analysis relies on the interpretation of written records of discourse or talk. Pioneered by Dilthey (1883/1976), hermeneutics was applied by Heidegger as a method of revealing the existential meanings of lived experience. In our study these written records take the form of verbatim interview transcriptions which allow us to unravel subjective meanings constructed through the person's culture, language, experience and social relationships (McConnell- Henry, Chapman, & Francis, 2009).

Participants

Non-probability, purposive sampling (Llewellyn, Sullivan, & Minichiello, 1999, p. 190) was utilised to recruit gastrointestinal cancer patients and their carers who were willing to share their experience. Twelve patients (median age 65.5 years), eight with colorectal cancer, two with oesophageal cancer and two with pancreatic cancer had undergone elective laparoscopic or open surgery with curative intent. Six carers (five partners and one daughter, median age 57.5 years) also took part. All patients were admitted on the day of surgery. The participant characteristics and therapeutic interventions are described in Table 1.

Ethical issues

The hospital Human Research Ethics Committee granted approval for the study protocol. Participants provided written informed consent. All participants were all over the age of 18 and had a proficient command of English to meet the requirements of an informed consent and interview without an interpreter. The use of interpreters was seen as problematic, due to the need for phenomenological interpretation and accurate semantic understanding. Participants are referred to by pseudonym.

Data collection

Data were collected between April and June 2008. Participants each engaged in a single semi- structured, conversational-style interview between 3 and 6 months after surgery. Twelve interviews were undertaken by phone with speakerphone capacity, and six were conducted faceto- face within the hospital. Telephone interviews allowed us to easily access rural participants after discharge. The efficacy and quality of qualitative telephone interviewing has been demonstrated in several studies (Holt, 2010; Stephens, 2007; Sturgess & Hanrahan, 2004).

Data analysis

The interview data was interpreted using a Heideggerian hermeneutic phenomenological approach. The researchers became intimately immersed with the data during intense discussions and periods of reflection. The QSR International NVivo software package version 8 assisted with initial coding to organise the data into working themes.

The researchers eventually became aware of defining themes or essences of the experience. This essence acted as a lens through which to interpret the broad participant experience; the point of entry into Heidegger's 'hermeneutic circle'. The hermeneutic circle is explained as a 'notable relatedness backward or forward' (Heidegger, 1927/1996, p. 6) interpreting participant quotes and stories against the greater backdrop of the essence of the experience for people within their family and community (Fagerberg & Norberg, 2009). This approach allowed the creation of a 'thick' (rich and descriptive) narrative (Ryle, 1968) that explained meanings of actions and narratives within the experience of illness and hospitalisation.

Rigour

The three clinical nurse consultants working in gastrointestinal surgery received 14 face-to-face hours of research training, including instruction in qualitative interview techniques. An interview guide facilitated a common approach to questioning (see Table 2). Each researcher interviewed patients and carers with whom they had no association during their hospital stay to reduce bias. Data were coded collectively between the three researchers. An independent coder experienced in qualitative research methods assessed and evaluated the data and validated the themes. This enhanced the coherence and consensus around research-decision-making (Roberts & Taylor, 1998, p. 173). We remained focussed on careful preparation of interview transcripts and the balanced integration of our philosophical interpretation with participant quotes to support the analysis of narratives and subsequent understanding of the phenomenon (de Witt & Ploeg, 2006).

FINDINGS

Altered time and temporality were the essence of the experience for our participants having surgery for gastro-intestinal cancer and their carers. Temporality refers to the state of existing within or having some relationship with time (Oxford Dictionary, 2011). Participants described experiencing recall of intricate details, waiting, a changing pace of time and being-towards-death. The person diagnosed with gastrointestinal cancer became distressed and no longer took time-for-granted in an uncertain life-world. The meaning of time for the patient and their loved one altered so it was experienced as a precious commodity to be valued and consciously managed by reorientating their focus towards a changed present and future. Being-towards-death was constituted of fear, but allowed the person to redefine meaning and purpose in their life.

Recall of intricate details

Taking care of time can be carried out in the mode of dating - in terms of events in the surrounding world ... What is existentially and ontologically decisive about reckoning with time must not be seen as a quantification of time, but must be conceived in terms of the temporality of being-in-the-world. (Heidegger, 1927/1996, p. 412)

Patients and carers became acutely aware of time and remembered intricate details they believed were significant and may have influenced the course of the cancer journey. Half the participants (9 of 18) described exact dates, times and test results and recall remained clear in the months following the cancer surgery.

The dates and times that punctuated participant stories became symbols of the disruption to the permanence of the person's life and the milestones in their journey towards cure. Luke, a married, 81 year old pensioner details the disruption that cancer has had on his life-world resulting from multiple hospital admissions.

I had the colonoscopy on the 6th of December at S. Hospital and then was admitted to C Hospital on the 12th of February for the operation. I was discharged on the 22nd, then I went to S Hospital on the 2nd of April ... for some sort of enema ... then on the 9th of April I went back to S. hospital for a sigmoidoscopy and on the 24th I'll be going back to have this bag removed and the ileostomy reconnected.

The cascading nature of the recall of dates suggests a torrent of experiences one after the other, with the pace of care controlled by outsiders. It may be that holding on to the details of events assists the person to define and find order in the steps of their cancer journey.

Recall of intricate details was extended to details of test results. John is a 70-year-old retired accountant whose ability to easily recall numbers may be attributed to his past profession. His knowledge of his own pathological markers against normal blood ranges helped him to quantify the seriousness of the disorder and need for surgery.

I had a haemoglobin of 96 which should have been between 130 and 160. So I was haemorrhaging ... I had a 17 mm growth in the bowel that was detected in early April. ... I had a colonoscopy on 15th of May that revealed the tumour was a malignant tumour. The following Thursday I was operated on.

Participants experienced the tumour as a threat to their continued being-in-the-world. Tumour size became a focus for patients and carers as it was a tangible part of an otherwise abstract illness. Being told the tumour size allowed participants to 'visualise' the disease. If cancer specialists gave credence to the tumour being small, or described it as shrinking due to neo-adjuvant therapy, people allowed themselves to feel more positive about their future. Mary, wife of Derek who had surgery for oesophageal cancer, recalled the relief felt when informed the tumour had significantly decreased in size.

The oncologists were very pleased ... because the tumour had shrunk. When we saw the surgeon, he said 'the cancer was the size of your fist'. He didn't actually say how small it had shrunk to, but ... they were very happy.

People described a sense of urgency to have the tumour removed. The time between diagnosis and surgery was identified as one of utmost importance as the tumour was like a stealthy enemy within that could grow unnoticed. It represented a continuing threat to their existence. Jane's husband Brian said of her oesophageal tumour:

When you know what you've got ... first of all you've got to come to terms with it and then you say 'Right, something has to happen and it can't happen quickly enough!'

Waiting

The less time being-in-the-world has to lose while taking care of time, the more precious time becomes and the more handy the clock must be. (Heidegger, 1927/1996, p. 418)

Waiting was a dominant theme described by patients and carers throughout their cancer journey. The experience of waiting was raised by 13 of 18 participants and seemed to be born of uncertainty, exacerbated by their fear of death. Time became more meaningful in the face of possible mortality.

Waiting heightened anticipation of outcomes and was relieved periodically by medical appointments. Waiting was something endured for both major events, such as a definitive diagnosis, through to minor components of the journey such as blood test results. Cancer created a continuous cycle of waiting, as one period of waiting concluded, another began. Imposed waiting signified loss of control over events in a time that mirrored a loss of control over an apparently failing body.

Brian, 63, emphasised the associated increase in anxiety levels that he and his wife Jane experienced whilst waiting. The meaning of waiting was influenced by the perception of cancer as a growing 'entity' that remained a threat until removed from the body. Waiting was what stood between cancer and recovery.

One thing you experience through all of this is the waiting. We went to see so many people for so many things and it was always wait, wait, wait. You'd be waiting ... 2 hours at a time and going in for the operation was much the same ... So we did an awful lot of waiting and then she got a bed and there's more waiting. You're all pretty nervous about what's going to happen ... but you're thinking 'Well at least we're getting somewhere ... once the day's over, things will have happened and we'll be on the way to recovery'.

Jane's background as a registered nurse and the context that this provided for her illness increased the anxiety she experienced waiting for follow-up scans.

Being a nurse has made me extra scared ... In two weeks time I've got to go for my first CT scan.

Even though Jane wanted the surgery to happen quickly, her apprehension grew as the operation date approached:

It was pretty stressful ... Your mind goes crazy and there are a few sleepless nights waiting.

Fred, 61, who had a Whipple's procedure for pancreatic cancer had been a busy, outdoors man. Fred struggled with the alteration of his life-world, the confines of the hospital environment and perceived delays in diagnosis. His wife Georgia, a former nurse observed:

He was irritable while he was waiting on the tests because he's such an active man ... The last oncology appointment ... we waited an hour and a half and nobody came. ... Fred was hungry and he was tired and he couldn't sit up long, so we left... The hospital rang his mobile and said 'You have to come back because the registrar wants to speak to you' ... It was an hour and a half and he couldn't sit there an hour and a half.

Fred's experience typifies the physical discomfort associated with long waiting times at appointments when people are unwell. The systems within hospitals control time and waiting, and the difficulty for the person with cancer to 'fit in' to this prescribed waiting was not always wellmonitored, appreciated or accommodated.

Participants described feeling a loss of control over time to surgery and this was perceived as a loss of control over the progression of the cancer. Sophie, a 71 year old retired medical secretary sought to minimise the impact of the cancer for her husband John by negotiating a shorter wait for an appointment. This, in turn, expedited the surgery to remove John's caecal tumour.

So he (the colorectal surgeon) was unaware that we waited that long, three-and-a-half weeks. We did mention it to the secretary at the surgeon's rooms. ... I said 'It's been diagnosed!' and she said 'Well, I have a cancellation on the Friday afternoon at 4 o'clock'. ... So that was a medium wait and ... It was a stressful time.

Changing pace of time

Being in the world never understands itself as running along in a continuously enduring succession of pure 'nows'. By reason of this covering over, the time that being in the world allows itself has gaps in it. (Heidegger, 1927/1996, p. 410)

An alteration in the pace of time was described by 7 of 18 participants. Time seemed to speedup or slow-down according to the point of their diagnosis and treatment. For Sophie, time slowed while they were waiting to get a definitive diagnosis for her husband, John. Once the diagnosis of caecal cancer was confirmed, time seemed to accelerate again as they progressed towards treatment.

Waiting to get in to see the specialist ... after the local doctor told John he had a growth, that was our longest wait. John had some black days then and would say something like ... 'if I'm alive'. Once we had the diagnosis ... things moved quickly without too much stress.

Once given the diagnosis of oesophageal cancer, Brian was distressed by his powerlessness to speed-up the time to Jane's surgery. Because of the increased urgency created by the meaning of cancer for Brian and Jane, time seemed to slow in the pre-operative period:

I suppose you think at the time 'well why is it going to be in two week's time, why can't it be next week?'

Jane found the pace of time while waiting for surgery influenced her level of apprehension.

The four weeks that I was waiting around for the operation wasn't too bad, the last week before the operation ... was pretty stressful.

A cancer diagnosis forced everyday life into a holding pattern where plans for the future were postponed while awaiting outcomes of treatment. The everyday activities of being-in-the-world, where the embodied self and life-world are takenfor- granted, were put aside. Robert, a 59-year-old truck driver with pancreatic cancer commented:

My attitude was that we've just got to ... get this thing fixed. ... You've got to deal with it and put everything else on hold ...

Being-towards-death

Death as something possible is not a possible thing at hand, or objectively present, but a possibility of being ... in such being-towardsdeath, this possibility must not be weakened, it must be understood as possibility, cultivated as possibility, and endured as possibility in our relation to it. (Heidegger, 1927/1996, p. 262)

The participants of this study all had surgery with a curative intent, yet they still felt threatened by the impact of the illness on their existence. The word 'cancer' seems tied to thoughts of death despite being, in many cases, a curable disease. Sophie revealed that for a long time, her husband John could not bring himself to say the word 'cancer'.

Patients and carers reflected on relationships, their purpose in life and found it difficult to make plans for the future. Time became more important in the face of possible death. People reprioritised what they considered to be important within their altered life-world. They wanted to spend precious time doing things that mattered. They became attuned to the possibility of death (Heidegger, 1927/1996, p. 340) to the point where it coloured their everyday life experience. Nine of 18 patients and carers described an orientation of being-towards-death. For Jack, 67, a recently retired divorcee, being-towards-death was perceived as much as a phenomenon of age as of illness.

I think when you get to my age, every serious illness you experience must take it out of you and I'm sure it shortens your life ...

Jane was learning to balance hope with realism in her being-towards-death. For Jane, surgery presented hope for cure that gave respite from her consuming and unsustainable immersion in the diagnosis of life-threatening cancer.

... it's hard to handle ... because initially when you find out about cancer ... you're thinking the absolute worst. If you can see a solution, and surgery was a solution, then you can have some hope. Maintaining hope is certainly helpful as you can only go so many nights where you can't sleep.

In a Heideggerian sense (Heidegger, 1927/1996, p. 346), Jane brought herself toward what she hoped for; a projection of herself beyond premature death. In her acceptance of hope, her surgery offered continued living as another potentiality of being.

Although Jane had been given the 'all clear' following her oesophageal cancer treatment, her husband Brian described her longer term perspective as remaining towards-death; an attunement that she was unable to let go of, despite the apparent success of surgery.

Our GP is ... saying 'You should be feeling relieved, ... happy, you should be thinking you've got a second life.' You think that she should be feeling that way but that's not the way she feels. What she's thinking is how much longer have I got to live? Is it going to come back?

Being-towards-death changed the meanings of 'time left' for Mary and her husband, Derek. Frank discussions with Derek's surgeon indicated he should, perhaps, focus on quality of life. It was important to Mary that they understood the level of threat so they could meaningfully reframe their view of the future.

Hopefully Dr M has got all the cancer. As he explained to us, 'there are no guarantees and if you are thinking of doing things like going on a holiday, then do it'. He was upfront about everything and didn't hold anything back. I think that's the best way because if things are not explained clearly, some people will think everything's alright.

For Stewart and his daughter Lucy, who lived overseas, this attunement to death was a perspective managed partly by a determined being-withothers (Heidegger, 1927/1996, p. 118), and partly by managing affairs and practical planning for the possibility of death.

Before his operation, we did have quite a party. We had several people around the bed and we were all playing bridge - including the Public Trustee. [laughing].

The participant's past created context for being-towards-death. Wendy, 64, had a hereditary genetic mutation which heightened the risk of her three adult children developing colorectal cancer. Wendy was first diagnosed with bowel cancer at age 27. The effect of this previous life experience found Wendy's 'care' as grounded in having-been (Heidegger, 1927/1996, p. 328) and shaped her understanding of the impermanence of being. Whilst Wendy's children faced the possibility of their mother's death from familial bowel cancer, the concept of their own death remained an abstraction. They were not able to experience an authentic being-towards-death without the fundamental attunement that owning a cancer diagnosis provides.

My oldest boy ... He was very emotional ... He thought he was immortal and everything was going to be the same and it wasn't. ... My DNA could pass on to my children. It's there and they are aware of it, but they feel that 'It's not going to happen to ME'. That's their attitude, but it is on their mind.

John needed to reposition to a being-towardsdeath that acknowledged the betrayal of his outwardly whole body.

... you think you're infallible, those things don't happen to you, so I was surprised. People can look brilliant, but not be well inside.

Simon, 65, lived alone in a rented, bed-sitter. His being-towards-death located him as an only child from a distant land. Simon returned to his homeland France between treatments to tell his mother of his cancer diagnosis. His experience of cancer was grounded in care; in the sense of being responsible for things that can be taken care of (Heidegger, 1927/1996, p. 282), and this ability to be a 'responsible' son was threatened by his illness.

Going home to France was ... stressful ... I fear I may die before my mum. I'm her only son so I cannot say 'Mum, I cannot come back to France anymore. I cannot live forever, and now I'm sick'.

Robert's experience of being-towards-death caused him to reflect on his relationship with his wife and others. From a perspective of threatened no-longer-being-able-to-be-there (Heidegger, 1927/1996, p. 251), Robert found new appreciation in the richness of life and his enduring relationships.

There's a closer bond ... to family and friends and gives you a clearer look at life because I had so much time on my hands. It just makes you appreciate things more.

Limitations

There are few limitations of this study. Participant recall of events was relied upon up to 6 months after surgery. In some cases there was significant delay between diagnosis and the time of the interview which could potentially impact upon the ability of participants to accurately recall their experiences. Our participants did however, provide rich and detailed accounts and did not appear to have trouble with recall.

Although 12 patients gave their consent to be interviewed, we did not have equivalent numbers of carers; some of our patient participants were divorced and living alone. We did, however, specifically ask patients about their perception of the impact of illness and hospitalisation on their family. This circular style of questioning gave us some insight into important issues for those family members.

Eight of the participants had colorectal pathology yet there were only two each with pancreatic and oesophageal cancer. While our purpose was not to make comparisons between those of varying pathology, we acknowledge that their experiences may be different.

This study only recruited participants from an English speaking background. This may limit the breadth of feedback available.

DISCUSSION

Heideggerian Hermeneutic Phenomenology gave access to a perspective centred around personal concerns of the patient and close family members. This method has been applied widely in nursing research, contributing a unique understanding to advanced nursing practice (Johnson, 2000; McConnell-Henry et al., 2009). A person's experience of illness is not just as a spatial entity located in a particular part of the body, but as a temporal entity, lived through (Toombs, 1998).

Time and temporality were the essence of the experience for our participants living with GIT cancer. We are not the first to identify the significance of temporality in the making of meaning and as a marker for impermanence for the person living with cancer. Several researchers have described the temporal experience of cancer against a framework of past, present and future. In a study that explored the temporality of cancer survivorship, people understood their cancer against their past childhood and family of origin; within the present through their relationships of care; and towards a future of hopes, dreams, anniversaries and milestones (Pascal, 2010; Pascal, Endacott, & Lehmann, 2009). In a case analysis of offspring at risk of familial breast cancer, (Svendsen, 2004a, 2004b) describes temporality as the 'lived-time' where at-risk offspring create meaning out of genetic knowledge. Only one patient participant of ours dealt with a familial threat, but like Svendson's example, family members were forced to consider a new life trajectory, even if that did not lead to cancer screening.

Recall of intricate details

Toombs (1998) proposes that patients experience immediate illness only as an ongoing flux of subjective, inner-time that does not measure itself other than as an extended stream of consciousness. In contrast we found people frequently recall intricate details that tie their experience of a GIT cancer diagnosis and treatment to objective time markers. Our finding is supported by others. In a study of people living with a HIV diagnosis, time is described as the taken-for-granted platform from which life is organised, and that people become conscious of time only when a disruption or shock occurs (Davies, 1997). A number of studies support our finding that, whilst prior to diagnosis the general flow of time often has little context, a cancer diagnosis focuses the person on details that become more significant due to a heightened awareness of mortality (Jennings, 2009; McConnell-Henry et al., 2009; Rasmussen & Elverdam, 2007; Wittmann, Vollmer, Schwiger, & Hiddemann, 2007). Cancer disrupts the normal balance so that time is split between before and after diagnosis, and these dates and times become the point from which to measure new time, either marking perceived cure or as the point from which the person views themselves as 'different' from before.

It may be that by tying the GIT cancer experience to objective time, our participants reigned in the unravelling of their certain being-in-the-world. The anthropologist Postill (2002), describes clock and calendar time as leaving little space for uncertainty, allowing for self-regulation and a way of exercising control over the passing of time in the past, present and future.

Waiting

Waiting was a dominant theme for our participants and it increased their level of distress from pre-diagnosis through to treatment and following discharge. In our study, the nature of waiting appeared to align with Heidegger's notion of 'awaiting' as an existential and temporal constitution of fear; the confused backing away from one's own threatened being-in-the-world (Heidegger, 1927/1996, p. 342). Waiting was not merely an inconvenient postponement of expected events. Rather the tumour was visualised as a growing, malignant entity that situated each period of waiting as a threat to existence.

Waiting for healthcare represents a period of uncertainty and powerlessness (Fogarty & Cronin, 2008, p. 463; Poole & Lyne, 2000). The period before diagnosis is the most stressful time with the level of threat not yet well-defined (Giske & Gjengedal, 2006; Poole & Lyne, 2000; Saegrov & Halding, 2004). For people with possible GIT cancer, this uncertainty, powerlessness and loss of control results in psychological distress and poorer quality of life whilst waiting for treatment (Giske & Gjengedal, 2006; Moene, Bergbom, & Skott, 2006).

The effect of physically waiting at clinics with a tired and ill body was noted in our findings. People with cancer found that their strength was drained by waiting to make and attend medical appointments (Saegrov & Halding, 2004). They too, perceived a heightened risk of the cancer spreading where treatment was not immediately available. Wittmann et al. (2007) proposed an individual's ability to draw attention away from 'time' and waiting is impeded when there are less thoughts of significance in mind. In their study, patients who utilised distraction were better able to adjust to illness and find meaning in their lives.

Changing pace of time

Our participants with GIT cancer experienced a changing pace of time, with time slowing during periods of uncontrollable waiting, and speeding up as invasive procedures were approached with apprehension. Tests and procedures could either occur as longed-for, anticipated and spaced or as a torrent of events, but were usually outside the control of the person and family. In a study of people with haematological malignancy, Wittmann et al. (2007) linked the experience of time to psychological distress. Patient's identified as anxious, with lower quality of life experienced a slowing of time passed, and there was a feeling of emptiness associated with waiting. Rasmussen and Elverdam (2007) also identified varying tempos of subjective inner time after cancer diagnosis, which they believed related to the level of challenge faced and the perceived threat to existence. Life for our participants was put on hold and this resonates with Jennings (2009) personal experience of being 'stuck-in-time' after a cancer diagnosis.

Being towards death

The curative intent of treatment for our participants with cancer did not prevent an orientation of being-towards-death. The word 'cancer' appears to be loaded with meanings of death that remain with the participants even after an apparently successful course of treatment. Little, Sayers, Paul, and Jordens (2000) report patients as feeling 'labelled' with cancer. It was difficult to discard the label, with anniversaries such as the date of their surgery, or follow-up scans and appointments reminding them of their cancer. Separate from the self before cancer, others report a limbo state where life as a cancer survivor lingers with uncertainty (Jennings, 2009; Little et al., 2000; Saegrov & Halding, 2004). Davies (1997) reported a similar uncertainty for people with an HIV positive diagnosis. She proposed Heidegger's notion of angst towards death that remains as a semipermanent veil over the person's life, 'like a festering sore or wound'. Pascal (2010) also used Heideggerian framework in her research that revealed cancer as creating possibilities of both being and non-being. After surviving cancer treatment, patients live with the awareness of a constant danger of relapse. Dormant fears surface when people are due for check-ups or recognise a change in their body (Saegrov & Halding, 2004).

Time became more important to our participants, and people wanted to spend the precious time in meaningful ways. Rasmussen and Elverdam (2007) described this as an 'appropriation of time', as people reprioritised their personal concerns in the face of an increased time consciousness. Chi (2007) described this search for new purpose and meaning as a way of relieving uncertainty. This may manifest as a renewed appreciation of, and closeness within, personal relationships (Evans, Tulsky, Black, & Arnold, 2006; Giske & Artinian, 2008; O'Connor, Wicker, & Germino, 1990). Heidegger frames this concept as being-with- others - spending time with those people from whom a person 'does not distinguish themselves, but to which a person belongs' (Heidegger, 1927/1996, p. 118).

In a meta-analysis of the role of hope for people with cancer, Chi (2007) also notes a phase of being-towards-death, but in this case it was as a mode of acceptance where people move beyond the denial, shock and anger of their diagnosis to reconcile life with death. Information-seeking and active participation in treatment planning assists people to manage uncertainty (Chi, 2007; Giske & Artinian, 2008; O'Connor et al., 1990). Our participants learned to balance hope with realism. Other researchers note that this process allows a focus on what can be done in terms of symptom control, emotional and practical support, and preservation of dignity (Evans et al., 2006).

Implications for nursing practice

Waiting for tests and procedures is noted as a significant stressor for patients and families. Some governments and service providers have created benchmarks for waiting times that have improved access to tests and procedures for cancer (NSW Health, 2007; UK Department of Health, 2009). The organisation Cancer Research UK (2009) reassures people waiting for diagnosis that 'cancers usually grow very slowly ... and do not show up on a scan until they have been growing for some time. So waiting a few weeks for a scan or treatment does not usually affect how well the treatment works'. By bringing up the subject of waiting as a routine point for early discussion may prevent 'waiting' from becoming a major source of patient and family anxiety.

A recent Australian study reported waiting time for diagnostic investigations was not associated with later cancer stage (Viiala, Tang, Lawrance, Murray, & Olynyk, 2007) and is supported by other researchers of colorectal cancer (Bharucha, Hughes, & Kenyon, 2005; Gonzalez-Hermoso, Perez-Palma, & March-ena-Gomez, 2004) and of oesophageal cancer (Grotenhuis et al., 2010). Pancreatic cancer has the poorest overall survival of any major cancer (Nelson, 2009) and a significant delay in time to diagnosis or treatment could impact on survival. It may be useful to provide a realistic context for uncertainty by addressing the likely aggressiveness of the cancer in early patient discussions.

Utilising Nurse Cancer Care Coordinators as a link between patients, families and their medical teams may allay anxiety by providing a point for communication and clarification of the patient's specific situation. Their presence in clinics at the point of patient and consultant discussions may strengthen their supportive capacity. Active involvement of carers in care planning may also alleviate anxiety and acknowledges the heightened importance of family for cancer patients.

CONCLUSION

The strength of undertaking phenomenological research is it can capture and offer insight into the complexity and richness of the life-world as experienced by patients and their close family members. By understanding the temporal experience of gastro-intestinal cancer, the particular meaning of waiting with cancer, and the orientation of being-towards-death despite a curative surgical intent, we can better anticipate the needs of patients and families in our care.

ACKNOWLEDGEMENTS

This study is a joint project of the Sydney Nursing School, University of Sydney, and the Concord Repatriation General Hospital, Sydney. It is the culmination of research output from one research cluster within the Concord Hospital Clinical Nurse Consultant Research Skills Development Project. We acknowledge the practical and academic support of Associate Professor Sandra West, Sydney Nursing School, University of Sydney. This study was funded by a grant from the Sydney Nursing School, University of Sydney, and a CRGH TAB (Totaliser Agency Board) Nursing Scholarship. We acknowledge the important contribution of the patients and carers who so generously shared their stories.

[Reference]

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Received 15 April 2011 Accepted 16 January 2012

[Author Affiliation]

SONIA KHATRI*, IAN WHITELEY*, JANICE GULLICK*,+ AND CAROLYN WILDBORE*

*Concord Repatriation General Hospital, Concord, NSW, Australia; +Sydney Nursing School, University of Sydney, Sydney, NSW, Australia

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