UNIVERSITY OF CALGARY Striving to Live Well in Limbo:

UNIVERSITY OF CALGARY
Striving to Live Well in Limbo:
A Hermeneutic Exploration of the Family‘s Heroic Journey
Through the World of Chronic Cancer
by
Linda Christine Watson
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE
DEGREE OF DOCTOR OF PHILOSOPHY
FACULTY OF NURSING
CALGARY, ALBERTA
MAY, 2014
© Linda Christine Watson 2014

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Abstract
Over the past 20 years, numerous therapies have emerged which are
changing the face of how we understand and treat advanced cancer. These drugs,
new therapeutic approaches, and improved outcomes have enabled more patients to
live longer with advanced cancer than ever before. However, the control achieved
through these interventions is neither permanent nor consistent, and maintaining
disease control in the advaced setting, requires ongoing treatments. More and
more often, the term chronic cancer is being used to characterize advanced (stage
III or IV) disease that is no longer curable, but is, or may become stable in
response to treatment (Berlinger & Lederman Flamm, 2009). In addition to
changing the language used to speak about incurable but treatable cancer, these
new medical interventions are changing how individuals and their families
experience this new phase of their cancer journey. In an effort to understand the
needs of this emerging population, this qualitative study, informed by Gadamerian
philosophical hermeneutics, was designed and conducted with the primary goal of
understanding how living with chronic cancer is experienced by families.
Unstructured interviews were conducted, recorded, transcribed verbatim, and
analyzed with that goal in mind.
The findings of this research highlight that living with chronic cancer is
substantially different than living with either curative cancer or dying of cancer.
Individuals and families who are living with incurable but treatable cancer inhabit
the space between these two extremes, which is metaphorically referred to in this
dissertation as the liminal world of chronic cancer. Participants spoke eloquently

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of their struggle to learn to live well in limbo. The metaphor of a heroic journey
has been utilized to organize and reflect both on the complexity and similarities of
the experiences that these families grappled with. This dissertation concludes by
identifying how these research findings apply to oncology nursing practice and
what innovations in education, professional development supports, and practice
roles would contribute to improved support for families who are living with
chronic cancer.

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Acknowledgements
To the families who shared their experiences:
Your generosity and honesty made this dissertation possible.
To my supervisor and friend, Dr. Shelley Raffin Bouchal:
Without your support, wisdom, guidance and encouragement I would not be poised to
complete this major accomplishment.
To my supervisory committee, Dr. Nancy Moules and Dr. Constance Barlow:
Thank you for your thoughtful comments, encouragement, and contributions that you
made to this dissertation. You made my dissertation stronger.
To the Social Sciences and Humanities Research Council of Canada:
Thank you for selecting me for a Doctoral Fellowship to complete this important
research. Your financial support created space for me to focus my time and energy
on completing this work.
To my colleagues at work:
For finding ways to support me in this work, either through allowing me to take time
away to write, by covering in my absence, or by your constant encouragement and
support. That we kept all our provincial projects moving forward through these past
few years is nothing less than remarkable given how many things were going on in
my world. I will forever be grateful for the support of my team.

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To the Cancer Care Team who cared for us during our journey with cancer:
Thank you from the bottom of my heart for the care and support you offered my
family as we strived to live our lives well in limbo. Your work is beyond important.
To my parents, Frank and Phil Sopracolle:
Thank you for giving me roots.
These past few years have required incredible strength, perseverance, and resiliency
to finish this work. Just as a tree can stand tall in a hurricane if its roots run deep, I
know that the roots that you gave me allowed me to be strong and stand tall through
the difficult times over the past few years. Please know that I am who I am today in
large part because of your love and support.
To Doug, Marie, and Levi:
I wish we did not have to travel through the liminal world of incurable but treatable
cancer, but we did. Thank you for allowing me to walk beside you and help in
whatever way I could. I learned so much from you.
To my children, Adam, Tyler and Amanda:
Thank you for being so understanding with me.
I have been a grad student for more than half of your lives, and you have never once
made me feel bad for choosing to pursue my dream of becoming a ―Doctor Nurse.‖
Many times that meant that you had to share my attention with my academic work, or
worse yet, you had to do things without me because I had homework to do. You have