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Living with a pituitary tumour: a narrative analysisJane Simpson a , James Heath b & Gemma Wall ca Doctorate in Clinical Psychology , School of Health and Medicine, Lancaster University ,Lancaster , LA1 4YTb Doctorate in Clinical Psychology , School of Health and Medicine, Lancaster University ,Lancaster , LA1 4YTc Department of Neuropsychology , Salford Royal NHS Foundation Trust , Stott Lane,Salford, M6 8HDAccepted author version posted online: 05 Sep 2013.

To cite this article: Psychology & Health (2013): Living with a pituitary tumour: a narrative analysis, Psychology & Health,DOI: 10.1080/08870446.2013.840784

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LIVING WITH A PITUITARY TUMOUR

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Running head: Living with a pituitary tumour

Living with a pituitary tumour: a narrative

analysis

Jane Simpson*, James Heath, Gemma Wall

1Doctorate in Clinical Psychology, School of Health and

Medicine, Lancaster University, Lancaster, LA1 4YT 2Doctorate in Clinical Psychology, School of Health and

Medicine, Lancaster University, Lancaster, LA1 4YT 3Department of Neuropsychology, Salford Royal NHS

Foundation Trust, Stott Lane,, Salford, M6 8HD

Word count (exc. figures/tables): 4990

*Requests for reprints should be addressed to Dr Jane Simpson, Doctorate in Clinical

Psychology, Lancaster University, Lancaster, England, UK, LA1 4YT (e-mail:

j.simpson2@lancaster.ac.uk)

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Abstract

This study aimed to synthesise the illness narratives of individuals living with a pituitary

tumour. Eight adults with a pituitary tumour were recruited from an endocrinology service in

the North West of England. A narrative methodology was adopted which investigated

elements of the individual narratives such as metaphor and structure but which also aimed to

produce a joint account of experience in this particular illness context by extracting themes

across the stories; these are presented as part of a chronological narrative. However, the

resulting group story was also analysed in terms of different types of narrative plots. The

group narrative started from the recognition of symptoms and then diagnosis though

treatment to post-treatment and future plans. In terms of narrative plots, one notable element

of the joint narrative was the flow between the culturally dominant restitution narrative,

where participants focused on treatment and recovery and the chaos narrative when recovery

did not seem possible. The findings contain many elements consistent with previous research;

however, the use of a celebrity figure to communicate about the illness experience and a

perception that objects or individuals should not be taken at face value emerged as more

novel findings.

Key words: pituitary tumour; narrative; qualitative; psychology

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Living with a Pituitary Tumour: A Narrative Analysis

Pituitary tumours, unlike most other brain tumours, are classed as benign and non-cancerous.

However, as the tumour develops on the pituitary gland, it can have a major impact on the

production of hormones and tumours are categorized according to which primary hormone is

primarily affected. The most common types of pituitary tumours are prolactinoma1,

Cushing’s disease2, acromegaly

3 and non-functioning pituitary tumours

4 (Fernandez,

Karavitaki, & Wass, 2010). In most cases, the main form of treatment is invasive

transsphenoidal surgery5, although transfrontal surgery

6 and pharmacological treatment can

also be used (Jane & Laws, 2002). However, additional treatments such as radiotherapy or

medication may be required. Furthermore, tumour regrowth is common so further surgery or

treatment is often necessary. After the removal of the tumour, the production of hormones

may be permanently impaired and lifelong hormone replacement therapy, either through

medication or daily injections, is often needed. Therefore, individuals may have to attend

regular appointments with medical services to monitor hormone levels and possible tumour

regrowth. Individuals with a pituitary tumour may experience a diverse range of difficulties

such as fatigue, infertility, sight problems, changes in physical appearance and also report

depression and anxiety and, because of the side-effects which often result from surgery, these

symptoms can continue after the tumour has been removed (Shimon & Melmed, 1994).

Much of the research that has been conducted on the psychological aspects of having

a pituitary tumour has utilised a quantitative methodology. These studies have commonly

reported that individuals with pituitary tumour experience impairments in quality of life both

1 The main hormone affected by a prolactinoma is prolactin.

2 The main hormone affected by Cushing’s disease is cortisol.

3 The main hormone affected by acromegaly is growth hormone.

4 Non-functioning pituitary tumours are the only type of tumour which do not affect hormone levels.

5 During transsphenoidal surgery, the tumour is removed through the nasal cavity.

6 During transfrontal surgery, a piece of the bone is removed from the top of the head and the tumour is accessed

between the frontal lobes.

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before and after treatment (e.g. Van der Klaauw et al., 2008) although studies that have

investigated mood difficulties have reported mixed results when comparing mood levels with

control groups (e.g., Korali et al., 2003; cf: Sonino, Fava, Raffi, Boscaro & Fallo, 1998).

However, even though these studies are useful in assessing overall levels of well-being and

distress, the impact of contextual factors and the ‘sense-making’ process are lacking.

Qualitative methods provide an important way of investigating the perspective of

patients and provide an insight into how individuals are affected by personal, social and

cultural contexts in relation to their illness (Lyons, 1999). To date, only one paper with

pituitary tumour participants has been published which used a qualitative analysis. Morris

and Jackson (2007) utilized inductive thematic analysis to explore the experiences of patients

living with a pituitary tumour at different stages of treatment using a combination of focus

groups and one to one interviews. Overall, six main themes (loss; a changed self; visible and

non-visible changes; identity changes; personality changes; relationship issues) were

identified but a sense of loss was reported to have a particular influence through all the

themes.

One example of a qualitative approach which is becoming increasingly used in

psychological research is narrative analysis (Weatherhead, 2011), although it is well-

established in related disciplines such as sociology and medical anthropology (Bury, 2001).

The importance of narratives in the process of adaptation to chronic illness is well described

(Crossley, 2000) and, as Broyard (1992) has commented: “storytelling seems to be a natural

reaction to illness” (p. 21). Indeed the sociologist Michael Bury’s seminal work on chronic

illness as biographical disruption (Bury, 1984, 2001) also emphasizes the importance of

story-telling in understanding the threats that chronic illness makes to the integrity of all

aspects of the self. Narrative approaches suggest that stories are more than a simple,

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spontaneous recollection of events. They incorporate a cast of characters and are often

constructed to follow a plotline with a beginning, middle and end (Riessman, 1993).

A number of theoretical approaches have been proposed to the study of illness

narratives (e.g., Bingley, Thomas, Brown, Reeve & Payne, 2008; Bury, 1982, 2001).

However, this paper will make use of a theoretical approach (Frank, 1995) which is

particularly relevant to the experiences of people with pituitary tumours given the ongoing

nature of the illness experience and the frequent lack of a definitive endpoint in treatment, i.e.

people living in a recovery or remitted state but short of a cure.

Arthur Frank’s influential papers (1995, 1997) have emphasized that through

storytelling individuals attempt to form a sense of self in an attempt to regain control, gain an

understanding and reaffirm their relationship with the self and others. Frank suggested three

broad illness narratives: the restitution, the chaos and the quest narratives. The restitution

narrative has been argued to be the most prevalent narrative about illness within modern

western medical services (Frank, 1995). The basic plot follows the structure of ‘yesterday I

was healthy, today I am sick but tomorrow I’ll be healthy again’ (Frank, 1995, p. 77). It is

based on the notion that for every problem or illness, a remedy, e.g. surgery, will cure the

problem and the person will then return to ‘normal’. In contrast, the chaos narrative is

categorized by a lack of narrative order and sequence which reflects the chaos and loss of

control in life following illness. It often occurs when the restitution narrative has failed and

there is no ‘cure’. Finally, the quest narrative positions illness as a challenge and that

something positive is gained through the experience. There is an appreciation of new values,

the development of new meaning and a desire to connect with others.

Consequently, the aim of this study was to synthesise the narratives of individuals

living with a pituitary tumour. A narrative methodology was adopted which investigated

elements of the individual narratives such as metaphor and structure but which also aimed to

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produce a joint account of experience in this particular illness and this is presented as a

chronological narrative. However, the resulting group story was also analysed in terms of

different types of narrative plots and with particular reference to Frank’s work.

Method

Design

This study used a qualitative design which employed narrative interviews. In

accordance with previous recommendations for narrative analysis, (e.g. Riessman, 1993), a

very brief interview schedule was developed to allow participants to talk about their own

experiences of having a pituitary tumour. This consisted of a single opened ended question

used to initiate the story telling process. The interview aimed to be non-directive so

participants were able to speak freely, reflect, reminisce and have control over the direction

of the interview (McAdams, 1993).

Participants

Participants were invited to take part if they were aged 18 years and above and were

able to read and communicate in English. They had to have been diagnosed with a pituitary

tumour, have begun treatment for the pituitary tumour more than six months prior to

participation and have stable hormone levels. Potential participants who met the inclusion

criteria were invited to take part by a health professional working in an endocrinology service

in the North West of England. Eleven individuals were verbally informed of the study and

provided with the study information sheet. Of these, eight participants contacted the

researcher and agreed to take part in an interview. The final sample consisted of five females

and three males. All participants were white British aged between 38 to 69 years (M = 53.1

years). Brief demographic details were extracted from the interviews (see Table 1).

_____________________________________________________________________

Insert Table 1 here

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Procedure

Appropriate UK ethics and research and development approvals were obtained.

During the first contact, potential participants were able to ask any questions about the study

and confidentiality, anonymity and the right to withdraw from the study were discussed. All

the interviews were digitally recorded and took place in the participant’s home between

December 2011 and March 2012. The interviews occurred in one session and lasted between

90 to 123 minutes (M = 101 minutes). To maintain confidentiality, each participant was

given the opportunity to choose a pseudonym; three participants chose their own pseudonym

and the remaining participants asked the researcher to choose one for them.

Analysis

Narrative analysis is a diverse methodology and a number of different analytic

approaches have been described (Polkinghorne, 1995; Smith & Sparkes, 2006) depending on

the aims of the research. As the first aim of this study was to establish a joint narrative across

the transcripts, guidance was followed from Crossley (2000) to achieve this. The transcripts

were read and re-read to develop familiarity with the structure and content. Individual

summary stories were then constructed. The summary stories were placed in chronological

order and were reduced to focus on key experiences. Each story was returned to the

participants and feedback requested. All the feedback was positive and no amendments were

requested. Each transcript was read individually together with notes from the researcher’s

reflective diary. Initially, for each transcript a coded system was used to highlight narrative

processes and factors. These included language, imagery, identity, emotion, narrative tone,

types of voice, structure, the developments of plots, points of convergence and divergence,

and characters in the story (Crossley, 2000; Weatherhead, 2011). Additionally, where

pertinent, the narrative was also arranged into stanzas based upon on how the narrative was

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spoken (Gee, 1991) . A summary of the narrative for each analysis was produced and these

were then compared, facilitating the emergence of a shared narrative based around five acts

or chapters. Additionally Frank’s work on the most common type of narrative plots in illness

contexts was used as a lens through which the data could be discussed and further interpreted.

Results

Excerpts from participants’ stories are used to highlight the differences and

similarities between the different accounts. Where quotations are used, (.) represents a short

pause and [...] indicates omitted words. In addition, emboldened words indicate a rise in

volume and {cries} indicates an action by the interviewee.

Chapter 1: Symptoms and Diagnosis – “Never in the world did I think I had a brain

tumour.”

The story begins with participants discussing the symptoms (headaches, dizziness

etc.) experienced. All the participants made reference to forming their own diagnoses which

ranged from relatively minor ailments such as migraines (Dave, Jane) to more serious

conditions such as multiple sclerosis (Danny). Dependent on the self-diagnosis, for some, the

symptoms were minimised or put to ‘the back of my mind’ (Jane). However, as the

symptoms persisted or became more severe then medical assistance was sought.

At this point, the narratives diverge, for Chris and Emma there is a sense of frustration

and anger as attempts to gain medical support were thwarted. This led to a sense of

desperation and loss of control as Emma was left ‘grasping at straws’ and Chris was ‘in

limbo’. For Emma, this was the lowest point in her narrative. She started to question

whether she was ‘going looney tunes’ and ultimately led to thoughts of taking her own life.

For the other participants, the recognition of the symptoms occurred quickly and the narrative

promptly moved to the impact of receiving the diagnosis. Initially, all the participants

experienced a state of ‘shock’, with Jane describing it as ‘like being hit with a sledge

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hammer’ (see also Hubbard, Kidd, & Kearney, 2010). For some, the shock was immediately

followed by a state of confusion and lack of understanding for both the participants and their

families as they questioned whether the tumour was cancerous:

Now I didn’t know what a pituitary gland was and a brain tumour (.) I thought ‘have

I got cancer? Is it cancer? Is the tumour cancer?’ (Lisa).

After the initial diagnosis, the pace of the narrative slowed as its implications started

to be absorbed. For some of the participants, especially Chris and Emma who had struggled

to get to the diagnostic stage, there was a sense of relief and even joy: ‘I mean it was

amazing. I thought at least we know what it is.’ There was a more confident tone and trust in

future treatment: ‘if they tell me it can be put right then it can be put right and that’s it’

(Chris).

Chapter 2: Treatment, Hospitalisation and Radiotherapy – “I just didn’t like it at all. It

wasn’t a very nice experience.”

The story then moved on to discussing the treatment and care that was received. Here

a variety of experiences related to specific aspects of the treatment. Initially, the pace of the

narrative quickened as treatment begins. For Jane, she described it as being ‘like a

whirlwind’ indicating a sense of being out of control as the responsibility for treatment was

passed over to the clinicians. The narrative then jumped to the experiences of treatment and

hospital. For some of the participants, the actual surgery was only referred to briefly using

phrases such as ‘it was fine’ (Lisa) and ‘everything went well’ (Chris) and indicates that the

surgery was a relatively minor aspect of the illness experience.

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Nevertheless, a key moment in the narrative occurs for those participants who had

radiotherapy. At this point, the pace of the narrative quickened and the detail became

increasingly vivid conveying a sense of anxiety as the experience was being relived in the

telling. Strong, emotional language was used to describe their experiences as ‘horrific’

(Sarah) and ‘like a nightmare’ (Lisa). The imagery portrays the experience of being trapped

and the treatment being like a form of torture:

I put this thing in my mouth and you have to lie down and then (.) it (.) it’s got like

erm a metal bar that comes from either side and sort of lodges in this frame around

you. Erm, so you can’t move, you can’t move then. (Mary)

Throughout this section, the participants made a number of references to the mask which was

worn during the radiotherapy. As a result, ‘The Mask’ became like a character in its own

right which represented the ‘horrors’ of treatment. As the chapter comes to an end, the

narratives conveyed a sense of relief about getting through the treatment.

Chapter 3: Recovery and the Impact of the Tumour – ‘It’s this stone that’s got dropped

in the pond and the ripples have just gone so far.’

This chapter focused on the period after surgery and other treatment and the

subsequent impact of the tumour on the participants’ lives. All the narratives began with the

expectation of a quick recovery: ‘to tell you the truth, I think, once you have had it removed,

you maybe think the worst is over’ (Lisa). However, this expectation was short lived as the

signs of recovery were slow. There was also little expectation of the psychological impact of

having the tumour; as Danny described:

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The biggest things I’ve struggled with since the op have been the emotional

challenges. It really has been. Physically I’m probably as fit as I’ve ever been in my

life.

However, Danny’s reference to his physical fitness also indicates the need to add some

balance to the admission on psychological difficulties and to try and present some positive

from the illness experience in a way which is reminiscent of the quest narrative.

Yet for the majority of the participants, this was the lowest point of the story. The

tone of the narrative became more chaotic as the participants began to talk about their

difficulties and the impact of the tumour. Psychological terms such as ‘depression’ (Sarah)

and ‘paranoia’ (Mary) began to appear, as a way to make sense of their experiences. There

was also a lack of narrative structure as the boundary between past and present difficulties

became less clear.

After the surgery, I thought that it [effects of having a pituitary tumour] would go

away just like that and it didn’t and it’s still ongoing. (Jane)

Without exception, all participants indicated that they had experienced significant

changes in terms of their work, social life and relationships. Participants also described

significant impacts on their sense of self. The narratives suggested that some had lost their

sense of productive adulthood. Danny used terms such as ‘toddler tantrums’ to suggest that

he had become more like a child in the way that he managed his feelings, suggesting an

unwelcome and inappropriate regression to a stage in his life which he had long since left.

Sarah spoke about her body being ‘like the body of an 80 year old’, indicating feelings of

unattractiveness based on the loss of those aspects of herself which she considered to be

symbolic of youthfulness but also of fertility (hair, good skin, loss of menstruation). Sarah

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had also divorced during treatment and she blamed this on the development of the tumour.

Clearly this also impacted on her new view of herself as sexually undesirable. Indeed loss of

fertility and changes to appearance have been considered important in understanding why

women are more likely to be left by their male partners (e.g., Anderson & Bury, 1998). Chris

described how he was ‘no longer contributing to family life’, emphasising his feelings of loss

around his previously valued role as an economic ‘provider’ and the lack of a suitable

replacement role.

Additionally, reference was made to the influence of societal gender roles. For Chris

and Danny, there was a sense of no longer being what they considered a ‘man’ - i.e. someone

in control of their own emotions:

I just want to be more, more of man than I feel I am, in terms of how I cope and how I

respond to situations. I want to be a rock, a support, a solid husband, a reliable

husband who can go and insulate the loft in the garage. (Danny)

The use of the example of loft insulation, while slightly humorous, also highlights the need

for a return to a safe and secure normality where gender roles are boundaried, expected and

understood and where life is organised, predictable, and is centred on the mundane (but now

desirable) occupations of everyday life. This life is implicitly contrasted with the chaos of

life since diagnosis.

The narrative throughout this chapter is shaped by the influence of society and the

dominant cultural restitution narrative that recovery should follow treatment. This was most

dominant in Jane’s narrative. Initially she described how there was an expectation that after

the operation she ‘should be getting better now’, indicating that societal beliefs on how

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LIVING WITH A PITUITARY TUMOUR

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patients should respond after illness can be an additional major stressor (see McCreaddie,

Payne & Froggatt, 2011). She went on to describe how she felt ‘discriminated’ against when

there were signs she was experiencing psychological difficulties:

They talked to me as though I wasn’t retaining information or grasping it and I was.

So I felt like smacking them one ya know (.) ‘Will you stop that, I am not brain

damaged, ya know’ so that was hard.

Furthermore, the majority of participants expressed anger at either themselves, their

family or some of the medical care that they received. This was perceived to be exacerbated

by changes in hormones levels but was also due to the frustration of seeing few signs of

recovery and a sense of being out of control. The narrative suggests that as the participants

felt more anger, they felt increasingly out of control which then led to increased anger. As

Emma described:

I would find myself erm (.) getting more emotional. Erm (.) but it used to annoy me

getting like that, do you know what I mean. Not emotional as in like (.) [phrase left

unfinished] but I felt weak because of it. But I’m not, I wasn’t weak, it was just (.)

[phrase left unfinished] but I didn’t seem to be in control of my emotions. (Emma)

Emma’s difficulty in specifying her exact psychological response – and her tendency to use

the more default word ‘emotional’ - emphasises the multitude and intensity of the emotions

experienced and, within this emotional chaos, the difficulty of individuating the emotional

response.

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There is no definite end to this chapter. The narrative is dominated by feelings of

shame, worthlessness and self-blame which ultimately led to some of the participants

describing suicidal thoughts:

I’ve even (.) I’ll get upset (.) I’ve thought about doing something silly to myself, like

killing myself {cries} but I wouldn’t do it (.) but it scares me to think that I could

think about it, because I’ve got people who I love and everything (.) and it’s just a

horrible feeling when you get that low. (Mary)

Chapter 4: Coping with a Pituitary Tumour – “People say, ‘God you look really well.’

Yeah, but inside I’m not.”

This chapter moves on to discuss how the participants tried to cope and continue on

with their lives during the recovery phrase. All participants were engaged in trying to

understand and come to terms with the impact of the tumour. Some of the participants spoke

of the need to adhere to and put their ‘trust’ in the medication. Many spoke about having to

‘put a front on’ (Lisa) or ‘putting on a brave face’ (Mary). For Jane, as a result of

experiencing ‘discrimination’ she described having to:

Learn to be guarded over your emotions and your tiredness and everything like that (.)

erm (.) so you feel loathed to actually speak about how you are feeling.

The use of the word ‘loathed’ is interesting here as it also conjures images of self

disgust, which has been argued to be an experienced emotion for people with some physical

health conditions (e.g., Consedine, 2008). For other participants, they described hiding their

feelings to protect the family and to portray an image of being in control. As a result, there is

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LIVING WITH A PITUITARY TUMOUR

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a sense of participants aiming to portray a sense of normality as they continued with everyday

tasks. For some this was indicative in their return to work quickly after treatment. However,

these strategies were not necessarily effective. Jane and Danny described the difficulties of

adjusting to the work environment and ‘embarrassment’ over physical symptoms, such as

‘severe sweating’, which meant it was difficult to ‘carry on as normal’. Mary described how

covering up her emotions led to a ‘vicious circle’ whereby her family and friends stopped

asking how she was feeling which led to her experiencing further distress. She was also

unsure of how she should react:

Sometimes you think, well, people should know how I am feeling and [RELATIVE]

is probably assuming that she must be sort of OKish, because she’s not really saying

anything, do you know what I mean? So I shouldn’t really blame her, should I? I

should blame myself ‘cause I’m (.) this is where my front goes up, I don’t talk about

me.

The use of the phrase ‘front’ is also reminiscent of the phrase ‘The Mask’ which was used

earlier in the narrative structure. This tendency to create characters or alternatives of the self

as a way of coping psychologically with threats is prominent through the narratives and

indicates the dangers and necessary deceptions/transformations which characterised

participants’ illness experiences.

Throughout the narrative some of the participants attempted to maintain a sense of

control by minimising the psychological impact of the tumour. Lisa repeatedly used phrases

such as ‘it didn’t bother me’. For David, the tone of his whole narrative is light hearted

which leads to his experiences being underplayed even though he was the only participant to

have surgery twice as well as additional radiotherapy. David’s tone is consistent with one of

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Kelly’s categorisation of narrative types, the comic narrative, and his use of this represents an

attempt to bring a more positive element to the experience through humour (see Kelly &

Dickinson, 1997). Another common strategy for participants was to ‘block off’ (Lisa) or deny

their experiences. However, some of the participants also described that their ‘memory is

affected’ (Sarah). Even though memory difficulties have been reported by individuals with a

pituitary tumour, it is possible that reported memory loss was also used as a strategy to

protect participants from previous traumatic experiences (Frank, 1995).

The majority of participants also spoke about the importance of being able to share

their experiences and communicating with other people. Some participants spoke about

attending conferences (Sarah) or finding information online (David). Many spoke about the

importance of learning about the treatment and impact of a pituitary tumour. However, this

was tempered by the realisation that not all the information was positive.

I was like, ‘oh, I wish I had never read this’, cause I just don’t read information

leaflets because I think, what you don’t know doesn’t hurt you. (Lisa)

The majority of the participants at some point compared their experience to that of

other people. Interestingly, the most common person with whom the participants compared

themselves was Russell Watson, a famous UK opera singer whose experiences of a pituitary

tumour had been well publicised. For Jane, Russell Watson helped her explain and give

credence to her experiences when talking to others:

So that did help, that it had been highlighted on the TV and it gave me, like I say, a

platform to speak about it. But I think ‘cause somebody famous has had it as well and

it had been highlighted, they wanted to know what was going on.

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Chapter 5: On-going Symptoms and the Future – “I try to think of myself as recovering

rather than recovered.”

As the stories drew to a close the narratives highlighted the ongoing struggle with the

impact of the tumour. Participants spoke about their future scans and how their current

difficulties and symptoms meant they were ‘reminded of it on a daily basis’ (Danny).

However, for some there was realisation and a hope that ‘things have improved’ (Emma).

Nevertheless, a constant thread running through this chapter and throughout the whole

narrative was the unpredictability of the symptoms. Participants used battle metaphors as they

had to ‘fight it again now’ (Jane) and that they would ‘not give up.’ (Chris). It would be easy

to take such metaphors at face value and for them to be interpreted in the light of the

difficulties experienced and the need to be vigilant in the future given the unpredictability of

the condition. However, such metaphors are also common in chronic illness research and

have been argued to be more a ‘conversational idiom’ (Wilkinson & Kitzinger, 2000) as

opposed to reflecting actual cognitions. Even if this were the case, though, the use of such

phases could also symbolise the desire to return to the familiar, the clichéd, through the use of

such phrases.

The analysis of discursive elements of the narratives also reveals parallels between

content and form. For Mary, the unpredictability was indicative of a ‘rollercoaster’ which

was also represented in the pace and tone of her narrative:

‘I was like a rollercoaster, up and down, I still am (.) hence the tears (.) erm (.) oh

god, this is what I’m like, I am alright for a bit, and then I just cry (.) which isn’t me.’

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As a result, it was difficult to make future ‘plans’. This led to some of the stories having a

distinct lack of resolution. Instead, participants lived day to day and predominantly focused

on the past and a ‘wish’ (Jane) to return to their ‘normal’ lives.

I would just like to feel me again

And not have these stupid emotions.

I just want to feel normal again,

Back to the normal me.

(Mary)

However, for the other participants, there was also a sense of ‘learning to live’ (Lisa)

with the symptoms and a desire to focus on the future:

I want to get on with doing what I was doing. I mean the fact, I mean, I had no

intention of retiring and doing nothing. I thought I would get a part time job erm (.) so

(.) there’s a lot, there’s a lot of living to do yet. (Chris)

For many of the participants, the story drew to a close by reflecting on their

experiences. Some spoke about the lack of awareness and knowledge of pituitary tumours.

Others discussed what they had learnt, such as being more relaxed and ‘to sit back and let

things take their course’ (Chris). However for all the participants, there was always the fear

of recurrence and that the tumour could regrow:

Whilst it’s not an overpowering fear, there’s that fear that these things can come back

and if it does, I couldn’t think of anything worse than going through what I’ve gone

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through and having to put everybody through it again. It, it just scares the living

daylights out of me, the thought of it coming back and having to go through that

again.’ (Danny)

Danny’s much more emotional reaction to the thought of reoccurrence (‘it scares the living

daylights out of me’) contrasts with the much blander, more common comments of other

participants and with his own often comic narrative. Indeed perhaps Danny’s admission,

earlier in his narrative, that he experienced ‘emotional problems’ allows his own narrative to

be more emotional and vivid.

Discussion

When considering the overall narrative, the tone and the pace flowed between the

culturally dominant restitution narrative and the chaos narrative. The restitution narrative

was particularly pertinent after diagnosis, once treatment was completed and in the attempts

of participants to cope with the impact of the tumour. The narrative became more chaotic

when participants were unable to get a diagnosis, during treatment and recovery. Indeed, the

flow between the restitution and the chaos narratives mirrored the metaphor of the

‘rollercoaster’ used by Mary and is evident within the chapters and between the chapters.

While attempts were made to adopt the quest narrative this was a far less dominant feature of

participants’ stories and perhaps needs to be understood within the discourse commonly

adopted by those with chronic illness (Wilkinson & Kitzinger, 2000).

This is the only study to look at the narratives of people with a pituitary tumour and

there is a richness and novelty in the data presented in its structure and content. However, in

terms of other studies with people with chronic illness, many of the experiences recounted

here are familiar. For example, the wait for a diagnosis has been widely reported to be related

to increased anxiety, low mood and anger (e.g. Giske & Gjengedal, 2006; Underwood,

Firmin & Jehu, 1993). Previous studies have also reported how individuals can talk about

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treatment as a form of torture as they have little understanding or control over a process

which can be painful. Therefore, individuals may feel threatened or fearful of the treatments

which are designed to help them (Frank, 1995). Moreover, the chaos narrative in chapter

three is reminiscent of Frank (1995)’s concept of ‘narrative wreckage’. This is signified by

the loss of temporality between the past, the present and the future. Furthermore, the loss of a

‘normal’ life and of traditional yet meaningful work, gender and social roles has been widely

reported in chronic illness research (e.g., Bury, 1983, 2001; Charmaz, 1983; Turk, 1979) and

the psychological effects of this have been frequently described (e.g., Mozo-Dutton, Simpson

& Boot, 2012). The extraction of positives from a distressing and unwanted experience has

also been noted (e.g., Charmaz, 1991) although the need to do this has been argued to result

from an emphasis in modern society on achievement and success (Bury, 2001) and certainly

some of the attempts made by participants in this study did feel more tokenistic. The

uncertainty and unpredictability of living with a chronic illness has also been noted (e.g.,

Scrambler, 2012).

More novel findings relate to the process of self-other comparisons. Such

comparisons are common in chronic illness (e.g., Williamson, Simpson & Murray, 2008), and

are usually used to bolster self-esteem and (perhaps paradoxically) sense of self (Frank,

1995). However, the participants in this study predominantly used a celebrity figure who had

also experienced a pituitary tumour as a backdrop to discuss their experiences. The influence

of celebrity figures on multiple life domains, including health and illness, has increasingly

developed in Western culture and the ‘celebrity’ appeared to give credence and acceptability

to the participants’ experiences. Moreover, negative and stigmatising reactions to chronic

illnesses are common and increasing public awareness of celebrities with such conditions has

been shown to reduce stigma towards other people similarly affected (Lerner, 2006). The use

of a celebrity comparison could therefore be seen as an attempt by participants to reduce or

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manage their feelings of stigma and redress their feelings of shame and inadequacy

(Charmaz, 2000). It is also worth noting that, unlike cancer diagnoses or other more well-

known illness trajectories, pituitary tumours have no ‘public story’ (Pinnock et al., 2011) and

so the need to produce some recognisable context for listeners of the story becomes more

salient. Another feature of interest is the emphasis on appearances being deceptive. The

medical equipment used to deliver radiotherapy is in fact an instrument of torture (the Mask),

people develop alternate versions of themselves (a ‘front’) in certain social situations, some

medical staff cannot be trusted and certain friendships vanish (‘she turned into someone

else’) or were maybe never as they had seemed pre-diagnosis (‘it made me think whether we

had ever really been friends’). Perhaps this theme of deception has its roots in participants’

difficulties in receiving a diagnosis and the frustrations of navigating both the medical system

and their social world in their new context of an ill person. It could also reflect a more

fundamental fear relating to the fact that their healthy body has been - and could still be -

hiding a lethal secret.

The findings of the study also underline the therapeutic importance of allowing

individuals to be able to tell their story. When given the opportunity to tell their stories,

participants’ responses were detailed and they described that they felt that it was ‘good to talk

about it’ (Lisa) and helped them ‘to put it all in context’ (Danny). This, combined with

difficulties in relation to a slow recovery, suggest that psychological support which allows

some construction of the illness narrative may be beneficial. The obvious therapeutic

approach here is narrative therapy which has been shown to be beneficial for individuals with

a chronic illness in helping them cope with stress, negative thinking, confidence and social

relationships (e.g. Petersen, Bull, Propst, Dettinger & Detwiler, 2005).

In conclusion, this study has been the first to detail the narratives of people with

pituitary tumours and to compare these with Frank’s theoretical approach to understanding

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illness narratives. The findings present the difficulties and challenges of living with a

pituitary tumour and the efforts of the participants to manage their illness and the multiple

domains it has affected. They also have implications for the psychological understanding of

patients with this type of tumour and it is hoped that such research can both help all health

care professionals understand the experiences of their patients and provide a foundation for

interventions, perhaps building on the therapeutic value of narratives (Carlick & Biley, 2004),

to help those who experience psychological difficulties.

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LIVING WITH A PITUITARY TUMOUR

30

Table 1: Participants’ Demographic Details

Pseudonym Age

(yrs)

Diagnosis Time since

onset of

symptoms

Time since

receiving

diagnosis

Time since

surgery

Type of

Treatment

Marital

status

Family

situation

Work status

Mary 51 Non-

functioning

2 years 1.5 years 1 year Transsphenoidal Divorced One daughter

One grandchild

On sick

leave

Chris

69 Non-

functioning

5 years 2 years 1 year Transsphenoidal Married Six grown up

children

Retired

Jane 53 Acromegaly 4 years 4 years 3.5 years Transsphenoidal Divorced One grown up

daughter

Employed

Danny 38 Non-

functioning

5 years 4 years 4 years Transfrontal Married No children Employed

Lisa

53 Non-

functioning

4.5 years 4 years 3 years Transsphenoidal Married Three grown

up children

Employed

Sarah

45 Acromegaly 9 years 9 years 7 years Transsphenoidal Divorced Two grown up

children

On sick

leave

Emma

57 Cushing’s

Disease

8 years 2 years 2 years Transsphenoidal Married One grown up

child

One grandchild

Employed

David

59 Non-

functioning

5 years 5 years 4 years Transsphenoidal Married Two grown up

children

Employed Dow

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