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The Legacy of Cancer:
The Importance of Passing on Beliefs,
Values, and Positive Health Behaviors
for Women with Cancer
Elizabeth G. Hunter, PhD, OTR/L
ABSTRACT. This article describes results from a qualitative study that
explored the role and function of legacy in the lives of women cancer
survivors. Legacy emerged as the passing on of values and beliefs. The
results were derived from information gathered from in-depth interviews
with 14 women aged 31-81 years, diagnosed with cancer. The interviews
collected information related to what the women wanted their legacy to
be, and how and to whom they hope to transmit it. Analysis of the inter-
views was guided by a typology of three distinct but overlapping catego-
ries of legacy: Legacy of Belongings, Legacy of Body, and a Legacy of
Being (Hunter & Rowles, 2005). One recurring theme from the inter-
views was the hope that family members would learn from the experi-
ences of the participants and would adopt positive health behaviors and
cancer screening. The findings suggest that addressing legacy interests
and opportunities may be an important tool for addressing needs of cancer
survivors.
doi:10.1300/J077v26n01_07 [Article copies available for a fee from
The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address:
<docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com>
© 2008 by The Haworth Press, Inc. All rights reserved.]
KEYWORDS. Legacy, cancer, women, well-being, survivorship, cancer
screening
Elizabeth G. Hunter is Post Doctoral Scholar, Cancer Prevention and Control, Room
306F, Wethington Health Sciences Building, University of Kentucky, Lexington, KY
40536 (E-mail: eghunt2@uky.edu).
Address correspondence to: Elizabeth G. Hunter, 1023 Pinebloom Drive, Lexington,
KY 40504 (E-mail: egh1@cardinalhill.org).
Journal of Psychosocial Oncology, Vol. 26(1) 2008
Available online at http://jpo.haworthpress.com
© 2008 by The Haworth Press, Inc. All rights reserved.
doi:10.1300/J077v26n01_07 101
INTRODUCTION
According to the American Cancer Society, there are approximately 10
million cancer survivors in the US (American Cancer Society, 2006). Can
-
cer survivorship is a term that has come to represent the state or process of
living after a diagnosis of cancer, regardless of how long a person lives
(Zebrack & Zelter, 2003). It is crucial to understand issues that might af
-
fect the well-being of this population in order to enhance the physical
and psychological experience of long-term survivorship as well as perhaps
influence positive health behaviors and cancer screening and detection
among the friends and families surrounding these survivors. A first step
to achieving such enhancement is to improve understanding of the social,
psychological, and spiritual/existential impact that cancer has on pa-
tient’s lives (Anderson & Martin, 2003; Zebrack & Zeltzer, 2003;
Weingarten, 2005). Previous related research (Chochinov, 2000) has
included a focus on survivorship issues in work on dignity therapy. Var-
ious factors were examined that either support or undermine a cancer pa-
tient’s sense of dignity (Chochinov, 2000; Chochinov et al., 2002a, 2002b).
Acknowledgement of personal attributes and a unique difference is fun-
damental to preserving dignity (2000). The dignity model places legacy
creation within the “Dignity-Conserving Repertoire” (Chochinov, 2000).
Patient’s sense of dignity is closely tied to psychological and spiritual
aspects. Dignity conservation may be enhanced through such things as
continuity of self, maintenance of pride, hopefulness, control, acceptance,
spirituality, and generativity (Chochinov, 2000). All of these characteris-
tics have the potential to be enhanced through legacy creation. Life also
poses questions that have challenged humans since the beginning of time:
Why are we here? What is the purpose of humanity? How do we make
a mark? How do we leave a legacy? Some people spend their whole lives
attempting to understand and answer such questions while others avoid
such ambiguity. Whether one is compelled to understand the “big pic
-
ture” or not, it appears to be imperative for an individual to at least at
-
tempt to organize and make sense of his or her life (Atkinson, 1995;
McAdams, 1985, 1993, 1996).
In terms of “normal” human development, Erikson (1963) put forth the
final two stages of development, generativity, the desire to pass some
-
thing along to future generations or the failure to do so that results in stag
-
nation; and the last stage, ego integrity, where one makes sense of life as
it comes to a close or doesn’t result in despair. More recently scholars
have taken license with Erikson’s initial idea of generativity and have
applied it in a much broader fashion. Since the term generativity was
102 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
coined, it has been described as a biological phenomenon (reproduc
-
tion) (Erikson, 1963), a philosophical or religious phenomenon (tran
-
scendence and immortality) (Kotre, 1984), a developmental task (normal
growth) (Erikson, 1963), and a societal demand (source of productiv
-
ity) (McAdams, 1996; McAdams, de St. Aubin & Logan, 1993).
Schaie and Willis (2000) expanded their Stage Theory Model of
Adult Cognitive Development to differentiate among various groups
often encapsulated within the broad rubric of “old age.” Originally Schaie
and Willis viewed old age as the stage of reintegrative cognitive work. This
paralleled Erikson’s (1963) idea of ego integrity. They have added a final
stage for the oldest-old stage of life that is called Legacy Creating. This
stage often includes writing or revising autobiographies, putting one’s
effects in order, distributing prized possessions, providing an oral and
material history of family pictures and heirlooms for the next generation,
making funeral arrangements, and perhaps undertaking a final revi-
sion of one’s will. In the current study, the goal was to explore issues of
legacy not connected necessarily to old age, but more specifically to
facing the potential end of life regardless of age through a cancer diagno-
sis. Chochinov (2000) suggested that for some patients facing the end of
life, ensuring that some aspect of life may transcend death is the key to
maintaining dignity.
Legacy creation by patients facing life-threatening illness may help
to maintain dignity by engendering a sense that they are leaving some-
thing of value, whether to thank loved ones, ask for forgiveness, leave
important information or instructions, or provide words of wisdom and
comfort. As described by Chochinov, “For cancer patients, stories have
a special meaning. In negotiating their way through regimens of treat-
ment, changing bodies, and disrupted lives, the telling of one’s own story
takes on a renewed urgency. In the end they are more than just stories but
the vehicle for making sense of, not just illness, but life” (Chochinov,
2000, p. 288). In this paper, we report on results from a qualitative study
that was designed to explore the concept of legacy and how is it trans
-
mitted by women diagnosed with cancer.
METHODS
Participants
The data were collected through in-depth interviews with 14 women
with various cancer diagnoses and time since diagnosis (from 6 months
Elizabeth G. Hunter 103
to 20 years). The women were recruited using theoretical sampling.
A sampling frame was developed during the course of the study as it
became clear that certain characteristics resulted in different experi
-
ences for the women. Four key characteristics were considered: age, chil
-
dren, prognosis, and initial diagnosis or recurrence. To maintain privacy
the names employed are pseudonyms. Table 1 has been arranged listing
each woman by age from oldest to youngest.
Participants were recruited from an elder mentor program associated
with the University of Kentucky doctoral program in gerontology (Victory,
Ravdal & Rowles, 1998), from the University of Kentucky Donovan
Scholar tuition waiver program for persons 60 and over, through the
University of Kentucky Markey Cancer Center Palliative Care Clinic,
and by word of mouth in a process of snowball sampling. The women
who participated ranged in age from 31 to 81 years. There was homoge-
neity in terms of education level, financial situation, and ethnic back-
ground. The majority of the participants was Euro-American, had at least
some college education, and would be considered middle class. How-
ever, the Markey Cancer Center has a large number of patients from rural
Eastern Kentucky. Five of the women who participated were from a very
low socio-economic background, which allowed for a fuller understand-
ing of the idea of legacy. The participants lived in Lexington, Kentucky,
104 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
TABLE 1. Women with Cancer
Name Age Children Cancer Diagnosis Characteristics
Early Diagnosis–Full
recovery
Multiple Treatments
and/or Reoccurrences
Terminal
Trish 81 X
Rebecca 76 X X
Missy 72 X X
Melanie 69 X X
Cathy 66 X* X
Betsy 65 X X
Millie 65 X X
Linda 64 X X
Claudia 62 X
Vicki 61 X X
Connie 54 X
Julie 54 X
Molly 52 X X
Patty 31 X X
*Adopted Children.
a North American urban center of approximately 250,000 residents.
Under the tenets of grounded theory, participants were added until satu
-
ration of data was achieved. Saturation is defined as “data adequacy”
meaning that data are collected until no new information is obtained
(Morse, 1995).
Recruitment Procedures
Each woman was contacted either in person, such as at cancer sup
-
port groups or the doctor’s office, or by phone when referred by a cur
-
rent participant or if responding to an advertisement. The women were
interviewed in a place of their choosing. Interviews lasted between one
and three hours depending on the participant, and were conducted using
a semi-structured interview guide format. Each session started with the
participant reading and signing a human subject consent form. This re-
search was reviewed and approved by the Institutional Review Board at
the University of Kentucky.
Data Collection
The interview began with a discussion of what was to come. It was
made clear that there was no pre-set definition of legacy and that identify-
ing participants’ own definition of the concept was one of the objectives
of the interview. Following the introduction, a general conversation about
the participant’s background including her family life, education, and
work experience was conducted in order to establish a context, enhance
rapport, and begin to uncover potential legacy issues. Once life context
was established, each interview segued into a specific focus on legacy.
Each respondent was asked to provide her definition of legacy and to
express the importance of the concept in her life. The discussion was
then guided to the type of legacy the participant thought was most im
-
portant to them and a conversation identifying what they hoped to leave
behind.
After eliciting the unconstrained ideas of each participant, the discus
-
sion was further focused to consider several forms of legacy, genetic,
material, historical, intergenerational, symbolic, and a legacy of val
-
ues, developed during a series of previously completed feasibility and
pilot studies (Hunter & Rowles, 2005). Each of the forms of legacy was
directly addressed in the interview. Genetic legacy included passing on
genetic material and the family bloodline. Material legacy involved be
-
queathing personal belongings. Historical legacy encompassed passing
Elizabeth G. Hunter 105
on family rituals and stories. Symbolic legacy was the drive for immor
-
tality through attaching one’s name to something that would continue to
exist after one’s death. Finally, a values legacy was defined as passing
on one’s beliefs. All of the stories the women shared were audio-taped.
Data Analysis
Primary emphasis in analysis was on exploring the women’s stories
and uncovering potential themes that arose on the topic of leaving a leg
-
acy. The analysis was completed concurrently as each interview was
transcribed. This technique allowed for an increasingly focused inquiry
and increasing depth of insight as analysis of each interview was com-
pleted. The result from this technique is the potential for aspects of the
study, be it questions or participants, to change as the study progresses
in response to emerging themes and as the investigator’s inquiry be-
comes more focused and information gathered more complex and rich.
Inductive thematic content analysis procedures as used by Rubinstein
(1988, 2001), Shawler, Rowles and High (2001), and Gubrium (1993)
were employed. Coding and interpretation was an ongoing iterative
process. Each transcript was read several times and line-by-line color
coded by specific content categories (e.g., inherited possessions, atti-
tudes toward passing on values, expressions of generativity). Hand cod-
ing of transcripts facilitated nuanced understanding of meanings in the
narrative text (Schoenberg & Rowles, 2002). Examples of legacy per-
taining to each category mentioned above (genetic, material, historical,
intergenerational, symbolic, and a legacy of values) were incorporated
into separate topical files and then aggregated into more general emergent
themes. This process enabled each subsequent interview to be informed by
and achieve increased focus in relation to an emerging typology. A deeper
level of understanding developed as this iterative process continued
(Dreyfus, 1995)
RESULTS
The information from the 14 completed interviews demonstrated that
legacy creation is more clearly associated with nearness to death rather
than with advanced age. Potentially facing death was crucially impor
-
tant regardless of the person’s age. The degree of illness influenced
the level of change of beliefs and meaning. Not everyone truly believed
she might be facing death once they were passed the initial shock of the
106 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
word “cancer.” Indeed, three of the women felt that their cancer was a
non-event. Melanie was diagnosed with uterine cancer fifteen years ago.
After an initial reaction of fear she realized that the cancer had been
found very early and was treatable with surgery. She had the surgery
and is now cancer free. Interestingly Melanie was almost apologetic
when describing her illness. She had not “suffered” as most people with
cancer had and actually was embarrassed to identify herself as a cancer
“survivor.”
I think I honestly believed that it was not going to be a big deal
from the beginning. Luckily it wasn’t. I can’t ...Imean I even feel
a little diffident labeling myself a cancer survivor because I didn’t
suffer.
Due to this conflicting feeling about her diagnosis and her not fearing
death during the illness, Melanie did not describe feeling that she had
learned from the experience or had a values’ shift due to her experience.
She was one of three who had early diagnosis and a fairly easy treat-
ment. Degree of illness seems to influence the degree of influence the di-
agnosis has on people. This is in no way meant to imply that one woman’s
experience of cancer is more meaningful than another; it is just another
aspect that emerged as having some influence on legacy creation.
Somewhere in the struggle of painful treatments and recovery the
strong feeling of mortality is born. The other eleven women had signifi-
cant growth experiences from their diagnoses. Three of them were
struggling with what was most likely a terminal case of cancer. For these
women, cancer was indeed the most important thing in their lives. They
had quite a bit to say about their experience with the disease and how it
had focused their attention on dying and making meaning of their lives.
The rest of this article will explore how the experience of a cancer diag
-
nosis interacts with the legacy typology of Belongings, Body, and Be
-
ing for the women that were interviewed.
Belongings
Belongings were not the most important type of legacy for women
with cancer. In fact, they were anathema to the core value that emerged
time and time again: decreased materialism. Having noted the change in
values, however, the women with terminal cancer were quite involved in
either planning for or the actual process of dispersing of their belongings,
Elizabeth G. Hunter 107
depending on their nearness to death. Patty, Vicki, and Linda were at
various stages of facing a terminal diagnosis.
Patty was the youngest woman in the study. She lived in Eastern
Kentucky and had completed eighth grade. Patty was very involved in
issues of legacy due to her continuously reoccurring cancer. When inter
-
viewed, she had just come back from Boston where she had undergone
experimental treatment. The doctors there had not held out much hope
for recovery for her.
Patty had started writing journals to her eight-year-old son and 10-year-
old daughter when she was diagnosed with cancer. This was the most
important item she was planning on leaving them. The journals are be-
ing used as a way for her children to know her after her death and a way
for her to pass along her values to them.
I’d never thought about legacy until I got cancer. I’d have to say
cancer had the biggest role. I’m dyin’ and I want to leave some-
thing behind for my kids. I want to leave them honesty, trust in
themselves and I’m always telling them to never say you can’t do
somethin’ because you can. I thought when I first got the diagnosis
that I’s goin’ to go through the chemotherapy and everythin’ would
be fine. I’d go into remission and I’d be fine. I never dreamed it
would go on this long and it’s taken a toll on the whole family not
just me. Me and my husband talk but he really don’t want to hear it.
He thinks I’m goin’ to be fine. I think he’s in more denial than any-
body. My little boy don’t understand and my daughter when I try
andtalktohercriesso...I’vebeenwritin’ a journal and I’m leavin’
that to them to read. I write down everythin’ in my journal. I just
write down day for day what happens and what I think and to let
them know I’m fine with this. God has a purpose for everythin’.
That’s what I told them. I just want everyone to know that the can
-
cer’s with me but it’s not goin’ to ruin my life. I’m takin’ control
over my life not the cancer. I want to be a role model. That’ll be
passed on through my journal. I just want my children to stand up
and be strong, be independent, don’t let no one tell them what they
can or can’t do.
Through her material belongings legacy, Patty was able to transmit,
not only a concrete object, but also that which is most important to her
such as her values. Those journals were allowing her to express herself
at a time her family was not ready to hear what she had to say, and they
108 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
were becoming the most important belonging she would pass along to
her children.
Linda was interviewed during the last months of her life. She was
actively in the process of gathering her family around her and giving
them her possessions. The first weekend she was interviewed, she had
children, cousins, brothers, and friends visiting in her home. Linda was
bedridden but still able to laugh and have fun. She was being successfully
treated for pain management. That weekend there was a lot of laughter
and tears involved in the divestiture process. This unique perspective
gave rise to the observation that although belongings might not be the
most important legacy they were often the vehicle for transmission
of values and beliefs as well. Linda would call in different people for
private conversations as she gifted them the things she held dear, be
they belongings, memories, or beliefs. The whole process allowed for
interpersonal communication not experienced at that depth in a typical
day-to-day life. Linda seemed to feel good about being able to give items
to the people she loved as well as to take the opportunity to pass along her
love. The process seemed to be easier for Linda than for the family and
friends who were the recipients of her legacy. Linda was on a mission
to place her cherished belongings and to finish the job of tying up
loose ends.
Sixty-one-year-old Vicki was undergoing treatment for a reoccurrence
of stage four breast cancer. She was given a 10-18% chance of survival.
Having the time to act after being given a potential death sentence had al-
lowed Vicki to make a personal gift to each of her children as keepsakes.
I do cross stitch and I have made sure to do one for each of my kids.
I did an angel, “Terry” belongs to an organization that helps ani
-
mals and things so hers is an angel. My youngest son loves wolves
so I did a wolf for him. My oldest son looks more like an Indian
than the rest of the kids. He looks more like my dad’s family so he
wanted an Indian and I did that for him and so on. They will all
have somethin’ I crafted.
Like the other women, Vicki was making special preparations in case
of her death. She also was very clear and summed up the attitudes of all
the women in terms of belongings.
Havin’ an illness like mine changes you in some ways and you
know what’s important. If this disease has taught me nothin’, it has
Elizabeth G. Hunter 109
taught me to realize what’s important and material things aren’t
important. It’s what you can do for others and the love that you can
show others.
Having a terminal disease was not the only stimulus to planning di
-
vestiture. Sixty-two-year-old Claudia was not facing a terminal diagno
-
sis, but she did feel that one could leave something important behind
through their belongings. Coming face-to-face with death had made her
realize that if she knew she was dying, for example, if her cancer came
back, there are things she would now want to do.
I think ever since I was sick I have begun to think more about pass-
ing things on to the future generation. I think this is why women do
quilts. I don’t quilt but I think it is one of the reasons women do
quilts because it is something of theirs, something of themselves
that they pass on as a legacy. I thought about this and what I could
do. If I knew my time was very short I would want to fix a gift for
each person. My siblings, my nieces and nephews and my grandkids
and close friends. Some of it would be things that I received from
my mother, that would need to go back into the family. I would
want to do some of it before I died.
Claudia seemed to feel that if she knew she was dying she would
want to be actively involved in gifting her belongings to her friends and
family. The actual act of giving would supercede just leaving things to
people through a will.
Body
Legacy of the body was of crucial importance to the majority of
women with cancer. Being childless made genetic legacy much less im
-
portant. So, for Trish, Millie, Claudia, Connie, and Julie, their cancer
experience did not result in much worry about passing on the genes for
cancer. As Claudia put it:
It doesn’t worry me as much that I’m passing along breast cancer
since I don’t have kids. I don’t think as much about passing on
medical history because I don’t have children and I don’t think my
dog qualifies! My nieces are aware that it is in the family now.
There were already other cancers in the family that everyone needed
to be aware of.
110 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
For the mothers the potential for a negative genetic legacy was a con
-
stant fear. Mary’s response to her cancer diagnosis was to create an elab
-
orate family tree that included information about each person’s health,
the diseases they had and what they died from. Once she began talking
openly about her cancer diagnosis she was shocked to hear from a num
-
ber of cousins that they, too, had dealt with breast cancer. Her very large
family was being charted and the information was being transmitted to
everyone in hopes of increasing awareness and preventive behavior.
As a young mother, Patty stated “I think about whether they’ll inherit
this cancer from me and that’s why I’m constantly havin’ them checked
up. It’s pretty scary to me.” The hope of these women was that through
their fight with cancer, their children would learn the importance of
screening and early detection. This was one of the ways for the women
to create a positive legacy out of a negative one. Vicki explained:
My kids are worried. My daughter’s had a mammogram and she is
Goin’ to have a colonoscopy too. My middle son is seriously thinkin’
about what he needs to get checked. It worries all my kids and
it worries me. I had my breast cancer at 58. That puts my kids at
high risk.
One good outcome of a negative health legacy is forewarning. The
mothers in this group stressed the importance of prevention and screen-
ing to their children.
Being
The legacy of being was the most important form of legacy for these
women. It was clear that the passing on of belongings and body legacies
were permeated by the real goal of passing on the meaning of one’s life,
one’s beliefs, and values. Belongings were chosen specifically to elicit
memories of the person, who they were and what they stood for. In terms
of the body legacy these women were interested in passing along their
beliefs in prevention and positive health behaviors; in other words, be
-
havioral transmissions of beliefs and values.
One of the themes that emerged in the overarching story of some
-
thing good coming from something bad was the improvement of rela
-
tionships among family and friends. Through the struggle of fighting
cancer Missy, 72-years old, realized how important she was to the peo
-
ple in her life. She felt that this was a gift from her cancer diagnosis. Vicki
also found that family interactions were improved due to her illness. One
Elizabeth G. Hunter 111
of the messages Vicki wanted to pass along to her children was to slow
down. Her diagnosis had that influence on them.
My kids were all busy in their lives and they didn’t see much of
each other. They had their own families, lives and jobs. They
couldn’t get together and see each other. The one thing that hap
-
pened is that my kids are real close now. They spend time together;
they make time to spend together. They have gotten real close
now. They have gotten together for the holidays and just for no
reason. Or one says they are coming to visit so the rest of them all
do too. If anything really good came from my getting sick it was
that my kids all got close. I’m very happy over that. It made my hav-
ing cancer worth something. They all have slowed down enough to
focus back in on the family. Even with their own families they are
spending more time with each other.
Vicki’s value of family life was transmitted through her illness and
the result was a legacy to her children and grandchildren. This was a
common thread in the conversations.
A second theme that emerged from the interviews was how values
were clarified by realizing that death might be near. This happened in
two major ways. The first was being motivated by their experience with
cancer to become involved in cancer prevention movements. Through
joining political and support groups a number of the women were quite
motivated to try and help future generations avoid the experience they
themselves were going through. Vicki had experienced quite a lot of
hardship through her cancer experience. Beside the fact that she was
fighting valiantly against an ever encroaching bout of breast cancer, she
was doing it without insurance. She was constantly battling for her Medi-
care benefits. This experience had given her the goal of making a differ
-
ence for the women who came behind her. This goal was actually the
thing that kept her in the constant fight against her cancer.
Any money we did have is long gone. I just went out and got my
month’s supply of medicine, it runs almost $400 a month. The
thing with social security, they found me 100% disabled but you
don’t get Medicare for two years after that. You get the social se
-
curity because you are ill then you don’t get medical bills paid for
two years! I guess they hope you die before the two years are up.
With a spend down card you are only allowed $285 a month to live
on. All the rest of the money you bring in has to go toward medical
112 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
bills. That’s for two people including rent, food, car, gas and every
-
thing! That’s what I’m in the midst of fighting right now. I don’t
have any children at home and I’m not over 65, so I fall into a
group that doesn’t get anything. If I was 24-years old and could get
pregnant I could have a medical card and pay all of my medical
bills. My goal is to recognize women that need medical help for
catastrophic diseases that don’t have small children in the house.
I have written to a state senator, I have contacted some big stars.
I have a congresswoman in Texas that is real big on breast cancer
issues, so I’m going to get her in line with me. Something has to
be done.
Her negative experience during her cancer fight had made a differ-
ence in her life and resulted in her goal to help others in her same situa-
tion. This fight had given meaning to her life. Claudia, too, was now
actively involved in a Coalition on Breast Cancer.
It is kind of political. I consider myself an advocate. It’s important
not just for myself but for others.
These activities, directed at a societal level, were ways for these
women to transmit their beliefs and their values. As Missy put it:
Values is the most important legacy. Fortunes and money and build-
ings come And go. You can lose things, things can burn down, a
tornado can come through. I think you have to be constant and pass
along a value.
Each of these women wanted to help future generations through such
legacies.
One further theme that emerged in the interviews was the fallacy of
the belief that one is in control of one’s life. Participants suggested that
having a cancer diagnosis is a sure sign that one quite often is not in con
-
trol of what happens. There are no guarantees and living well does not
necessarily protect one from all the trouble in the world. Cathy was able
to transmit the legacy of her beliefs by discussing this topic.
I have a philosophy about illness that I kind of hope that a few
people catch and keep. It is sort of summed up, not long after I was
diagnosed with cancer. I was scheduled to sing a solo at church.
Someone asked me why did you get cancer? That morning before
Elizabeth G. Hunter 113
I sang I said I need to share something with you, I said I have been
diagnosed with cancer and it is scary. I said my response to why
I got this is why not me? I said when I was created I was never
promised that I would always be well. In fact I was not promised
that I would live forever. It is all just sort of a matter of time. I don’t
blame anyone, I don’t blame God for this. It is just something that
happens. Some of it may be my fault, but basically it is something
that has happened and there is no one to blame. The promise I have
is that God will be with me through the whole thing no matter
what happens. With that comes peace. I hope that idea will live
beyond me.
The Legacy of Cancer
The first legacy of cancer is the cancer itself, the lessons learned and
the potential for personal growth through struggle. The majority of
these women had fought through a tough and often painful battle. Some
were winning and some were not. All were able to talk about their strug-
gles in great detail. These stories would be considered a negative legacy
of cancer; the disease process itself. For example, Linda’s struggle to re-
main strong for her adult children:
The other night “Mark” was sitting on the bed talking and you
know he just fell into my arms crying. [Linda starts crying] You
know things like that will affect you but I have to turn around and
be a supportive parent. He said “We thought you were going to
grow old and we were going to take care of you.” And I think this
shows them that that’s not always true. It’s hard. You have to be
strong. I mean I feel like you’re supposed to be there for your kids
until you are so old that they end up taking care of you. I feel like at
62 I still had a long way to go. I used to tell my kids “I’m going to
live to be 100.” When you hear the word cancer it is like knocking
the legs out from under you. When you are 61 and hearing those
words you’re like that’s too young.
There was also however a positive legacy of cancer that emerged
quite clearly. This is the silver lining, perhaps a testament to the resilience
of human beings. All of the women who felt that their experience with
cancer had strongly influenced their lives, that is, all but two, talked
about the good that had come of it. Connie was quite clear about this.
114 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
My philosophy is that bad things come into your life as a growth
opportunity. If that sounds Polly Annaish so be it! You don’t grow
when things are going along swimmingly. You think that things
are going well by your own hand, that’s the funny thing. That you
are making things work. What a fallacy that is. Maybe that’s why
we encounter bad things, as a wake up call. I’m pretty philosophi
-
cal these days about things. That’s a good thing that has come out
of it all. I can’t say I don’t sweat the small stuff, but I don’t sweat
quite as much as I used to! I think I have the capacity to tell the big
ones from the little ones now. That’s a good thing.
Claudia summed up a common sentiment among the women:
I think a lot of good has come from it. It makes you slow down, to
stop and think and evaluate some things. I used to get all bent out
of shape over the house and all kinds of things that were so superfi-
cial. Now I wish I had a little of that left in me! [Laughter] I think
to my self that’s not important. Who’s going to care? Fifty years
from now! I’m not as uptight about a lot of things as I used to be,
I just mellowed out. If I can get to it I’ll get to it, if I don’t it’s not
important. Completely different priorities now. The legacy can be
toward other people, but there is an element of personal growth in
many of the sentiments and experiences. Joan felt she had experi-
enced a huge amount of personal growth: I look at it as a good ex-
perience. I got really sick but I had a great group of friends that got
me through it. I was really grateful for that. Then I started with the
breast cancer support group. Now I’m with the National Cancer
Survivors Day. When I got started with that I was saying I don’t
know what I can offer this group. Maybe I can do the labor. The
next thing I know I find myself on TV being interviewed about be
-
ing a survivor. After the whole experience I was like well there is
something I never would have done. I never would have been on
TV. I said so there is a new experience that came from cancer. I tell
people look at all the great things that have happened since my di
-
agnosis. It has opened up my life, okay I’m still missing a breast
and that stares at me everyday, good things did happen.
Since her experience with both her husband’s death from cancer and
her own fight, Joan has become deeply involved in her local hospice.
She volunteers tirelessly for others in their own fight with cancer.
Elizabeth G. Hunter 115
One last legacy of cancer is the motivation to take stock at possibly a
much earlier age than one might otherwise address this issue. Molly was
forced to perform a sort of life review, an activity often associated with
the recognition of mortality in old age (Butler, 1963), while barely out
of her forties. She took the time to reappraise her life to assess the need
and potential for change. She was very happy to find herself quite con
-
tent with her life lived so far.
At the time I was diagnosed with cancer, in looking back over my
life I asked myself and talked to my husband about whether I would
have done anything differently. I’m comfortable with the choices
I made. I don’t have any big regrets. I feel good about the choices
I’ve made about profession, my children and how we raised them.
While certainly the potential for depression and despair exists, hav-
ing the time to think about regrets and possible changes one might make
can also be a gift (Butler, 1963). Molly was reassured that she was con-
tent with her life. For someone who might not feel as sanguine this intro-
spection could possibly lead to major changes and a more fulfilling life.
This study revealed how the motivation for legacy transmission was
heavily influenced by the experience of cancer. Regardless of age, each
of the women interviewed had quite consciously considered their lega-
cies and what they wanted to pass along to others. The cancer experience
had led to the contemplation of death and a distillation of that which was
most meaningful to each woman. Whether it was hoping to influence
health behaviors, medical decision making, or finding the positive in a
potentially negative experience, each of these women were strongly in-
fluenced by their cancer diagnosis physically and psychosocially.
DISCUSSION
The women interviewed for this project supported this idea that the
specter of death can strongly and often positively influence one’s life.
Granted, none of the women were thankful for her cancer diagnosis, but
the majority was able to clearly explain benefits she received from the
experience. All of the women whose lives were changed by their diag
-
nosis were able to talk about the good that has come out of this bad
situation.
116 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
Frank (1998) writes of the different types of illness narratives
that emerge in interviews with people dealing with sickness. The one
that emerged continually among these women was what he called the
“quest story.” In this way of speaking of one’s illness, illness is lived as
a quest. The illness becomes a condition from which something can
be learned and the learning can be passed on to others. Quest stories
are about illness leading to new insights. All but two of the women were
clear in their stories that it was important to learn something from the
experience they found themselves in and even more important to then
attempt to help others learn the lessons without having to go through the
pain. The illness is the occasion of the journey that becomes a quest
(Frank, 1998).
Death the stoics said was the most important event in life. Learning
to live well is to learn to die well or, put another way, learning to die
well is to learn to live well (Becker, 1973; Yalom, 1980). Facing death
has the ability to strip one of all artifice and to clarify what is real and
what is unnecessary. Martin Heidegger’s (1962) concept of how death
interacts with being human represents a core concept of existential phi-
losophy. It is possible that the important insight and awareness of one’s
future death acts as a spur to shift us from one level of existence to a
higher one. Heidegger (1962) believed that there were two basic levels
of existing in the world, a state of forgetfulness of being and a state of
mindfulness of being. At the level of forgetfulness of being, one lives in
the world of things and the everyday diversions of life. On the higher
level, the mindfulness of being, one marvels at existence and is continu-
ally aware of one’s state of being.
According to Heidegger, there are certain “urgent experiences” that
jolt us to the state of mindfulness of being. Of these experiences, death
is the ultimate. This point of view has a foundation in the presupposition
that death makes a positive contribution to life. In one study two hun
-
dred individuals who had near-death experiences reported years later,
as a result of their experience, they had a strong sense of the shortness
of life and its preciousness (Yalom, 1980). They had a greater ability
to live in the moment and to savor each moment as it passed. Yalom
(1980) described the positive changes that he saw in his years of work
-
ing with people with terminal cancer. Their personal growth included a
rearrangement of life’s priorities, deeper communication with loved ones
and fewer interpersonal fears resulting in a greater willingness to take
risks and less concern with rejection.
A cancer diagnosis can be the impetus for active legacy creation and
transmission regardless of one’s age. The legacy of cancer melds with
Elizabeth G. Hunter 117
the individual and allows for a richer, more conscious transmission of
one’s legacy. Meaning is not something that can be taken for granted,
but through the achievement of finding meaning one can experience a
sense of transcendence. That feeling allows one to be able to rise above
one’s situation through being part of something greater than oneself.
This impetus helped these women come to terms with the specter of
death that emerged with their diagnosis of cancer. By focusing outside
of themselves they were able to find a meaning in their experience and
then were better able to pass along this wisdom as a legacy to friends,
family, and society as a whole.
A final example of the power of cancer in legacy creation comes from
Connie. When faced with her potential death, she had come to the con-
clusion that she owed something to future generations. She had no chil-
dren and was moved to influence the future through teaching. So in her
50s she began working on her PhD. Her cancer diagnosis caused her to
take stock and to move forward in her life in such a way that she would
positively influence society and would be able to feel good about the
legacy she would transmit.
Many experiences guided me to a greater appreciation of spiritual-
ity that has allowed me to ponder my cancer diagnosis with great
tranquility. Death has made me quite conscious of the passing of
time and the responsibility to see that whatever time I have left is
well spent. I have a strong sense of stewardship and connectedness
to those coming behind me. I developed a yearning to teach. In
teaching I hope to leave a legacy of the technical knowledge I’ve
accumulated, but more importantly a world view that encourages
those that come behind me to embrace every experience, including
the painful ones, as an opportunity to grow. My cancer fueled that
sense. We are all mortal, and we will all die. It’s what we do with
the time that we are given that makes the difference, and I mean to
make a difference.
IMPLICATIONS FOR CLINICAL PRACTICE
Clinicians must be aware of how legacy creation interacts with treat
-
ment decision making, how one confronts and reacts to a life-threatening
illness, how quality of life is influenced by legacy creation, and how
family/caregiver relations are affected by legacy creation. Cancer re
-
search is constantly facing issues in participant recruitment; in the
118 JOURNAL OF PSYCHOSOCIAL ONCOLOGY
future the importance of legacy to individuals may influence the drive to
take part in clinical trials. Legacy creation might be used as a possible
intervention for those facing life-threatening illnesses. Finally it may be
important to explore how a patient’s creation and transmission of a leg
-
acy might change during the stressful course of diagnosis and treatment.
In sum, the interviews clearly conveyed the concept that this group of
women seemed to require meaning in their lives. This is consistent with
previous research that has indicated that living without meaning, goals,
values or ideals can provoke considerable distress. In a severe form it
may lead to the decision to end one’s life (Yalom, 1980). Yalom (1980)
suggests that individuals facing death are able to live “better” lives if
they have a sense of purpose. Meaning and purpose have different con-
notations. Meaning refers to a sense of coherence; purpose refers to in-
tention and aim. But in conventional usage these words are often used
interchangeably. To further delineate terms, there is a difference be-
tween “the meaning of life” and “the meaning of my life.” The meaning
of my life embraces purpose. If one possesses a sense of meaning they
experience life as having some purpose or function to be fulfilled. There
is some overriding goal to which one applies oneself. Among the behav-
iors that provide human beings with a sense of life purpose are; altruism,
leaving the world a better place, serving others and participating in charity;
dedication to a cause; creativity; and self-actualization (Yalom,1980).
Making meaning of one’s life and leaving some sort of mark become
muchmore important to women faced with possible death after receiv-
ing a diagnosis of cancer.
STRENGTHS AND LIMITATIONS OF THE STUDY
The results presented here are based on in-depth interviews with
fourteen women representing select segments of the United States pop
-
ulation. Future studies can usefully probe each type of legacy in more
depth. Comparative studies employing larger samples are warranted. There
is a need for deeper probing of variations in expressions of legacy manifest
by individuals from different socio-economic and ethnic groups. There is a
need to investigate gender differences in legacy. Cohort differences in
legacy merit investigation: to what extent do different generations attrib
-
ute different levels of importance to one type of legacy over another? It is
also important to expand our conception of legacy to embrace the recipi
-
ents of legacy. In this study the topic was approached from the perspective
Elizabeth G. Hunter 119
of the individual creating the legacy, but what about “legatees,” those who
receive the legacy? To what extent is the meaning and value of legacy
defined by its acknowledgement and acceptance by the receiver? Finally,
and perhaps most intriguing, there is a need for longitudinal studies of leg
-
acy that explore the concept as it evolves over the life course and among
generations and to provide insight on the increasing concern with one’s
legacy that appears to become a key issue during life-threatening illness
and during the terminal phases of a life.
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