The sum is greater than its parts: Storied lives of people with pancreatic cancer

1. The sum is greater than its parts: Storied lives of people with pancreatic cancer • My experience of using the BNIM • Explore biographic detail in the illness narratives

2. Exploring the experience of living with pancreatic cancer A longitudinal narrative study by Maureen Grant Supervisors: Prof Julia Addington-Hall Dr Nikki Jarrett Dr Jane Hopkinson

3. Pancreatic cancer • Disease of poor prognosis • UK approx 7,000 people diagnosed annually, around 7,000 deaths • 10th most common UK cancer • Majority of cases are inoperable with a mean survival rate of 4-6 months (Cancer Research UK, 2006) • 5-year survival rates for surgical resection are low • (Fitzsimmons et al, 2004) Thank you for your time

4. Pancreatic Cancer Care Pathways: Implications? • Operable tumour (Group S) 2. Inoperable tumour (Group O) • may have pre-op chemo (Gemcitabine, NICE), to reduce tumour size • Whipples op: major surgery 1wk+ ICU, then GI ward • med rest of life (may induce Diabetes) • prone to appetite/ weight loss, tumour recurrence • 5 yr survival low • may have palliative surgery for symptom relief (stent) • Chemotherapy (32 wk cycle) + CT scan; rarely RxT • emphasis on Quality of Life • mean survival 4-6 months, chemo may extend to 9 -12+ Cancer is removed Cancer is present

5. No of participants in Pilot study = 1 Participants recruited to BNIM study = 12 (1deceased) Total no of interviews to date = 17 (+ 1 this week) Longitudinal participants = 5 Post-diagnosis on Ist Interview = 4 wks–18 mths Age range at time of diagnosis 40-78 Age range at time of Ist Interview 40-79 [Men aged 40 – 68; Women 68 – 78] STUDY current status 09/04/08 Group S participants = 5 (1male) Group O participants = 7 (5 male)

6. STUDY AIM: To gain insight into the events and issues of foremost importance to people living with pancreatic cancer. My SQUIN: “Iam interested in your personal experience, yourexperience of your illness. How it’s affected you, your daily life, your family and what’s important to you. You begin your story at any point you want, I will not interrupt until you have finished speaking. I will take some notes and then anything that appears significant, we can go back to and talk about.”

7. What do I know about this individual? SELF Who I am

9. Aspects of the participant’s biographies

10. Bio-medical disease framework NHS Care

11. MH: “The thing first of all I didn’t know I had cancer, I was losing a lot of blood (4 secs) and I was rushed into hospital . for A&E and I had become very anaemic (5 secs) They kept me in the ward at A&E for two days then they take me up to the ward for fortnight and I had scans, Xrays .. And Dr (name) came, he couldn’t understand why my urine had the blood … I’m afraid to say you’ve got cancer .. Pancreatic and I had no other discomfort whatsoever and I was absolutely amazed and he said I’d have to have an operation but the chances are better now than before.”

12. PB: “Struck me when I realised I was ill when my eyes started turning yellow .. And on my back all the time >couldn’t eat <.. being cancer ‘cos that’s what's gone on in the past . with my son >my sister’s daughter, my sister’s son< my dad, main side of the family so I was actually scared or worried that it could be that, just never wanted to face it ..” (Deceased)

13. Internal past + present influences on Person Cancer as illness Personality Family life / deaths Age Gender Relationships Childhood Ethnicity Past illness SELF Who I am Hobbies interests Own philosophy Body image Beliefs and values Responsibilities Work Self

14. Influences on the Self Cancer as illness Family illness deaths Family role Age Relationships Gender Health care professionals Childhood Ethnicity Past illness Hobbies interests SELF Who I am Society politics Canceras disease Holidays travel Health & wellbeing Hospital care Social norms Beliefs and values Body image Responsibility to others /self Personality Own philosophy Work status Time Employment

15. FT: “Absolute SHOCK, absolute SHOCKER >. Was numb for weeks afterwards ... Um, as (wife) can testify ... and er .. an its an it’s the severity of what I’ve got . which is such a shock . Basically I’m a dead man. (Mrs T is crying) For what I’ve got I’m, I’m gunna die from what I’ve got >there’s nothing anybody can do about it which is quite a shock ‘cos when you hear of cancer nowadays <. its not the . big, bogeyman it used to be. Y’know you, you say oh you got cancer . <but its not the big bogeyman y’know you’re not there’s no guarantee your gonna die, there’s a good chance you’re gonna live, but with THIS >..I’m a dead man (5 secs). And that’s that’s it, that’s it really I mean, I mean it’s changed my life completely. I mean I don’t work anymore and that is why, when I worked I mean I was a worker. I went out to work earned some money to buy the nice things in the house, so I’ll, my money’s sort of halved . So all the nice things that we were gunna do we can’t do anymore (5 secs). Um .. and people change when they’re round you as well, people change round you.They treat you differently. They treat you with kid gloves and feather dusters and they won’t be straight with ya .. I mean (wife) different ‘cos she’s so close to it, so shes different but everyone else treats you with . kid gloves. I mean the family .. they pulled round me but they still don’t treat me as . well I spoke more to my brother in the past three months than I have in the past three years. . Um . all because of this. But I don’t work anymore . that’s changed . Sex life’s gone down the tubes . That’s changed. . Um .. I don’t know how to explain how I feel most of the time … ‘cos I’m living under such a cloud. .. And I don’t really know how to explain that . to the people that ain’t living under it. . It taints your whole life. All what you think, all what you do, it taints your whole life. ” …

16. BM: “Oh, right, well. Up until August I was about the healthiest pensioner in (place). But previous to that for . possibly a year on and off, I’d had the odd bad stomach pain. But I’m terrible for going to the doctor… I rang the doctor’s, made an appointment, went down there . > I knew my tummy was lumpy< I could just tell it wasn’t right. But I went in all smart thinking I’d probably had irritable bowel you know, never thinking it was cancer, though I did have cancer thirty years ago . Um .. so anyway, doctor (name) gave me a check-up and the next thing he called me down there and told me I had cancer .. Um, which is a few tumours in the lining of my stomach, which has started shrinking and the pancreas . which they can’t operate on. And I did ask about that recently It depends where it is in the pancreas where they can operate. Um … more than anything it just made me really mad that I’ve got it because I travel a lot. My daughter lives in (country) and if I could save the money I’d go over there a couple of times a year and stay with her. ‘cos she’s really the only family I’ve got you know ” … But apart from that I’m trying to live as normal as I can . I do push myself a lot . Some days I’ll go out and I’m out for a few hours you know, absolutely totally exhausted but I just . I still try to live as I’ve . always lived . which is . you know, get up and go, don’t sit around and ‘cos I’m 68 next month and I don’t feel 68, feel more like 48 (laughs). Keep going and keep pushing myself .. An I think that’s about it . unless there’s things you would like to ask me about.

17. Holiday / pre-diagnosis: TD: “Well you what, I didn’t except anything happen to me like that, cos I been always been so well all my life. I mean I feel so well you know. Anyway I um never had an illness at all, any medicine at all, so when it really did come it was a shock to me obvious, we went out on holiday to Egypt.. and er and er this um, this river what they called .. Nile.. cruise” Holiday / pre-diagnosis / past med history: PB:” Well I mean . I’ll tell you how it all started. Like I mean I was on holiday in Turkey. The initial symptoms were um upset stomach. It wasn’t quite diarrhoea but it wasn’t an actual stool motion. And the urine turned very dark brown and this I know to be a sign of Hepatitis A .. And probably the other Hepatitis’ as well but I’m not sure of those. Which I had 30 odd years ago >that’s funny I thought to myself< cos I seem to remember the doctor telling me that once you had it you don’t get it again. So I thought what the hell do I do now and . you but the local remedies . Whatever they gave me. And as soon as I came back which was what a week later, my eyes had absolutely turned yellow as well. Which was another .. SIGN that um . I had sort of I thought at the time liver problem, that’s what I thought.”

18. Fragmented Self(s) Cancer as illness Family illness deaths Ethnicity Age FAMILY SELF SOCIAL SELF Family role Gender Relationships Friends Childhood Hobbies interests Past illness SELF Who I am Holidays travel Beliefs & attitude BODY SELF Health & wellbeing Knowledge of cancer Philosophy Body image Personality Responsibilities to Self /others Work status Age RESPONSIBLE SELF Time

19. Conclusion • The BNIM is effective: • people like to talk / be listened to • elicits biographic material contextualised by an illness experience • portrays biomedical reality • . draws attention to social and cultural underpinnings • values the participant as a “whole” person • seems to provide participants with some kind of satisfaction

20. Is the interview relationship reciprocal? Does narrative enhance the self-worth of the narrator? Illness narratives function to: Repair “illness damage” - establish biographical coherence (Greenhaigh 2005; Hyden 1997; Frank 1995) Narrative is a fundamental way of attributing meaning in our lives and constructing stories about the self is linked to the construction of self identity. (Kinsella EA, 2004).

21. References: • Jones 1985, Denzin 1989, Frank 1997, Hyden 1997, Crotty 1998, Kinsella EA 2004, Greenhaigh 2005, Cladinin & Connelly 2006, CECo 2006.

22. THE END Thank you for your time