7. PROCESO DE FORMULACIÓN DEL PLAN DE ACCIÓN NACIONAL PARA LA GESTIÓN
8.3 ACCIONES PRIORITARIAS A CORTO PLAZO (2014) A SER ADELANTADAS PARA LA GIBSE
Barbara felt that she had received her old life back. “My mental attitude is no longer consumed with my illness, and I again have a sense of well-being about my life and future. I have been blessed, God has given me back my health, He has given me back my life!!”44 Many other patients described a
new meaning that cancer had given them. “Cancer doesn't just mean having treatment, it means treating your mind and body to a new way of life” was how Gemma expressed it45. Her cancer, like for many others, provided
44 Barbara Bagley, "Stage I Non-Small Cell Lung Cancer" Steve Dunn’s Cancer Guide Stories. http://cancerguide.org/bbagley_story.html. [Accessed April 5, 2013].
45 Karen Calvert, "Why a Brave Mum Said No to Chemotherapy," (Adelaide Advertiser,
meaning for life, an especially new meaning. The stories studied contained 398 references to new meaning for life arising from the cancer experience. Of these references 206 were made by male patients, 164 by female patients and 28 by affected relatives and friends. This paragraph presents the results of the analysis of these references and what they revealed about the patients’ well-being. Cluster analysis of the stories based on similarity of the words used to describe meaning for life, with the words used to describe well-being, realised a Pr = 0.88. This was taken to indicate a close relationship between the two, i.e. that generally those patients who found new or altered meaning for life, through their cancer, experienced better well-being. The questions being addressed in this presentation of results are what did the patients say when they wrote about meaning for life? Were any gender based
differences found? And what did the 28 accounts by relatives and friends
reveal?
Gaining insight into the content of what the patients said was commenced by making a tag cloud from the 150 most frequently used words in the meaning for life child node of the well-being parent. Figure 5.3 presents this tag cloud.
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Figure 5.3: Meaning for life tag cloud
Tag cloud showing the most frequently occurring words found in the patients’ stories that were stored in the node meaning for life. These words were: cancer (204), life (140), time (115), one (96), people (77), now (70), just (67), god (65), years (56), and day (53). Combining god and one yields 161 references, which after cancer, indicates the centrality locating god, taken in the broad concept, as the principal source of meaning in the storytellers’ lives. Every one of the 10 most frequent words conveys a sense of well-being.
After the word cancer, the most frequent words occurring were found to be “life”, “time”, “years”, “people”, “god”, “help”’ “work” and “treatment”.46
Although the word “well-being” occurred only 42 times the context of the commoner words supported the link between it and meaning for life. The tag cloud provided insight into a set of child nodes that had potential to unlock the content of the stories in relation to meaning for life expressing well-being.
46 The actual frequencies of the words that occurred most commonly were cancer 205, life
Matrix coding query that employed the new child nodes revealed that family became more important to survivors.47 This query also revealed that
after family, volunteering, life as before but with altered priorities, employment, education and sport, contributed meaning to the lives of surviving patients. More men engaged in volunteering, continued employment and education than the women.
Family became more important for providing meaning for the lives of the majority of survivors. Typical of this group Brent wrote “We are currently going through one of the most difficult times of our lives. We have endured tragedies, illnesses, and internal friction like any other family, and like any other family we have dealt with and moved on.”48 Larry typified this group
whose cancer gave a new purpose to both his wife and himself. He said that he was always a “happy guy, not subject to depression”. He shared his melanoma diagnosis with his wife:
I realized that she was living the same nightmare I was. I thought I was alone in the hole I had dug. But I wasn't! This woman, who'd said, "in sickness and in health" those many years ago... She meant it! She was right there with me, when I could only see myself. Together, we decided to live. No, not that evening, but we were together and we would do our best with whatever time we had left together.49
47 Matrix coding query was performed based on the new child nodes of meaning for life
that suggested themselves from the text. These were in order of frequency of references:
family (30), volunteering (29), life as before but altered (27), continued employment (15),
attenuated employment (20), education (9) and sport (6).
48 Brent Galster, "Testicular Cancer Brent Galster," Cancer Guide.
http://cancerguide.org/bgalster_story.html. [Accessed April 10, 2013].
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For another survivor, motherhood helped put her brain tumour behind her. “Forrest has been able to put her cancer in the rear view mirror and embark on another big adventure: motherhood. Today, she, her husband, and her 1-and-a-half-year-old son continue to thrive.”50 For Barbara the
adoption provided the meaning. “God blessed me in two ways back then, one; giving me back my life, the second, bringing this precious little girl into our lives. We now have legal custody of her and this little 45 pound person has enriched our lives more than I can say. I will be forever on my hands and knees giving thanks to our Father in Heaven for both blessings.”51 And in two
other references, divorce was cited as allowing life to proceed. Ed said “after two weeks in the hospital, I was discharged and went to live with my sister Dorothy for two weeks. (After 20 years of marriage, I separated in 1990 and divorced in 1994.) My energy was low and I was able to eat very little”.52
Volunteering was mentioned in twenty nine references by both men
and women as providing meaning for life after cancer. Double the number of men said this. Volunteering was more mentioned in stories sourced from
50Cullen Forrest, "Woman Bounces Back from a Brain Tumor – with Humor Intact” Survivors During and After Treatment.
http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/StoriesofHope/wo man-bounces-back-from-a-serious-brain-tumor. [Accessed April 10, 2013].
51 Bagley, "Stage I Non-Small Cell Lung Cancer."
52 Ed Mitchell, "Ed Mitchell's Story of Esophageal Cancer," Steve Dunn’s Cancer Guide Stories. http://www.cancerguide.org/emitchell_story.html. [Accesed April 10, 2013].
cancer society websites but was well represented in the stories published in books and newspapers. Some examples of volunteering were quite exemplary such as Dave.
After his diagnosis, [Dave] also began volunteering with his local American Cancer Society office in Sacramento and he hasn’t stopped. Since then he’s chaired committees, sat on boards and helped raise hundreds of thousands of dollars through local and national events including Relay For Life, Making Strides Against Breast Cancer, and Daffodil Days. He had volunteered at 7 American Cancer Society golf tournaments, and last May was the survivor speaker at the 7th Annual Capitol Invitational Golf Tournament held at Serrano Country Club in El Dorado Hills. In September, he was the "special guest" speaker at the annual Harvest of Hope Gala held at Dalla Terra Estate in Granite Bay.53
For others, volunteering involved areas of community service unrelated to cancer, such as Deborah. “[Deborah] is a customer service director for the Great Plains Council of the Girl Scouts. ‘I'm definitely more compassionate,’ she said. "When I see someone on the street that's different, I smile at them, because I know I'm in their shoes, too. I'm just happy to be alive and making a difference.”
For some patients the meaning for life in survival took the form of a restoration of their old lives with the superfluous stripped out. This was the case for Barbara quoted as an introduction to this paragraph. Another, Lois, typified many when she wrote:
Thereafter, I explored a part of my life never fully experienced before, the need to be. Slowly, I began to feel that I was worthy of
53 Dave Wesley, "17-Year Prostate Cancer Survivor Feels Great," Stories of Hope.
http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/StoriesofHope/17- year-prostate-cancer-survivor-feels-great. [Accessed April 10, 2013].
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just being, that I need not do all the time. For about a year, I slowed down; I stopped to smell the flowers. I shifted my "gotta's" to "wanta's," doing more of the things I really desired without a sense of deadlines. I spent more time with family and friends. I followed my body's lead—resting when tired, practicing yoga. As I relinquished more of the external controls, I gained the strength of inner control. 54
In addition to the references to meaning for life made by patients themselves above, the lives of relatives and friend were impacted too. Twenty eight references were made by the relatives and friends of patients were about supporting the person who had cancer. Family members and friends were represented as being affected by the cancer of their loved one. They visualised themselves as in it together. Most references were very practical and some accounts mentioned changes in the relationship between husband and wife. Dan recognised the support of his wife when he wrote “"Even though it's a man's disease, it affects the couple. The macho man has to realize that his wife is there with him, and she's probably not being recognized enough as someone who has been very supportive of him… Despite Dan’s mantra that prostate cancer is only an obstacle to conquer in life, they [Dan and his wife] have had their struggles…And although Dan didn’t experience incontinence as a result of treatment, impotence required the couple to make adjustments."55
54 Kelly, "New Meanings of Death," 182.
55 Dan Bard, "Couple Shares Lessons on Caregiving,” Stories of Hope.
http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/StoriesofHope/Stori esByTopic/index?topic=Caregiver. [Accessed April 2.2013].
In several stories, the family and friends achieved new meaning for their lives by becoming involved in cancer support groups, in posting blogs to the internet or in media that raised awareness of cancer. James’ daughter wrote:
I told my dad I loved him and that no matter what we would fight this together. [Her father had breast cancer which is usually thought of as a women’s cancer.] [James] shared his story — and his scars — with a reporter from a local television station. More reporters followed. ‘I might say that a star was born. He just lit up when [the news crews] came over.’ she said. ‘That was the best medicine for him. My dad and Dr. Weinstein turned out to be the
Odd Couple,’ she said. “They appeared on local television
programs, radio talk shows, and were featured in several newspaper articles. Each time, they were spreading the male breast cancer message. [James’] story made international news.
56
Some results suggested the underlying presence of God in the meaning for life search found by so many of the patients studied.57
Theological reflection follows in the next chapter under the same heading to seek an understanding of the reported activities as patients were coming to grips with the requirements of their treatment and of their survival.
In summarising this section on meaning for life, the tools of word frequency tag cloud and matrix coding query provided answers to the questions posed. The CAQDAS results showed that most patients valued family relationships and volunteering as they developed either a restoration
56 James Lowery, "Gritty Determination Sees Survivor Through," Survivorship: During and After Treatment Stories of Hope.
http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/StoriesofHope/gritt ydeterminationseessurvivorthrough. [Accessed April 2, 2013].
57 NOTE: A query under the combined nodes of meaning for life AND creedal found 88%
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of their old lives or embarked on a new life. All reference were characterised by patients improving their well-being. Relatives and friends were affected too. Most visualised their role as helping the person with cancer. They were in it together. Intimate relationships changed. Their lives would never be the same again.