Abstract
Adjusting to a new “normal”! When I finished treatments, I thought I would be “over the top” happy... but I wasn’t. It felt good to be done of course, but I found myself being in limbo. When I was undergoing treatment, people would ask how I was doing. When I was done nobody really asked anymore. It’s like they think “Hey, you beat it... now you can go back to your everyday life”. But it’s not like that!! Cancer changes you! The trauma of a cancer diagnosis changes a lot of things, even if, in the end, everything has gone really well. (#2048 Q33 ONT)
Large sample surveys have reported that cancer survivors experience physical, emotional, and practical changes following completion of their cancer treatment (Burg et al., 2015; Cancer Control Queensland, 2015; Lerro et al., 2012; Li et al., 2019; Moslassiotis et al., 2017; National Health Services, 2015). The kinds of changes survivors report are remarkably similar across these surveys and include, for example, physical limitations, mood swings, fear of recurrence, return to work challenges, and financial burdens. These changes can have a profound impact on the day-to-day lives of survivors. It is important for oncology nurses to know how these changes may impact the daily lives of cancer survivors, as a basis for their assessment and efforts to improve the experience of survivors.
The Canadian Transitions Study (Fitch et al., 2019) provided an opportunity to explore the needs of cancer survivors and gain a deeper understanding of the impact changes could have one to three years following completion of treatment. One change described by the responding survivors was coping with lifestyle adjustment following cancer treatment. This brief communication will present perspectives of the survivors about living with this consequence of cancer treatment, as reported in the Transition Study, and the resulting implications for oncology nursing practice.
METHODS
The full description of the Transition Study is presented elsewhere (Fitch et al., 2019). In brief, a survey was distributed to a randomly selected sample of 40,790 cancer survivors from across 10 Canadian provinces. The sample included adult survivors (aged 30+) of breast, prostate, colorectal and melanoma diseases with no metastatic spread, and selected hematological cancers; and adolescents and young adults (AYA, 18–29 years) with all non-metastatic cancer types except testes, where metastatic disease was included. Ethical approval was given by the respective ethical boards of the 10 provincial cancer agencies that disseminated the survey.
Several survey questions asked respondents to indicate, on a pre-defined list, changes they experienced following completion of their treatment. Opportunity to write comments about these changes was also available. For the purposes of this brief communication, only the responses and comments concerning lifestyle adjustments are presented. Frequency counts were calculated for the numerical data and content analysis was conducted for the written comments (Hsiu-Fang & Shannon, 2005).
RESULTS
The 13,258 respondents who completed the survey were predominantly adults aged 30+ years of age (97%) and 65% were 65 years or older. Fifty-one percent of the respondents were female and 77% had not experienced metastatic disease.
Sixty-six percent (n = 8,706) of the respondents identified at least one primary challenge following the completion of their cancer treatment. In total, they identified 15,351 challenges. Of those challenges, 5.8% (n=883) were categorized as challenges with lifestyle adjustments.
Themes that emerged from the analysis of the written comments concerning lifestyle adjustment challenges included getting well again, getting back to my previous lifestyle, accepting my new normal, and adjusting to bodily changes (see Table 1 for illustrative quotes).
Table 1.
Survivors found lifestyle changes following cancer treatment challenging
Theme: Getting well again
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Theme: Getting back to my previous lifestyle
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Theme: Accepting my new normal
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Theme: Adjusting to bodily changes Living with an ostomy
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Getting well again: a number of survivors described how their efforts following cancer treatment focused on recovering from the effects of treatment. They focused on “simply getting back on my feet after the surgery” and “regaining my health again”. Whether it was surgery, chemotherapy, or radiation, the treatment was often described as leaving them “feeling weak and exhausted.” As one survivor wrote, “It took all my energy just to get well again.”
Getting back to my previous lifestyle
Survivors comments categorized under this theme focused on intentional efforts to regain a previous level of functioning with regards to activities of importance to them. For some, the activities involved household chores and yard work while other were more focused on their return to work, engaging in physical activities, or performing at a previous level with sports-related activities. Survivors described feelings of frustration at not being able to perform according to their expectations and a degree of impatience at how long it was taking to reach the outcomes they desired.
Accepting my new normal
Some survivors had embraced the idea that the changes they were experiencing were a ‘new normal” and reflected a likelihood of being permanent. Being acutely aware of the changes and how they influenced their daily live was part of a dawning recognition that cancer and its treatment had changed life in irrevocable ways. The challenge now was how to accept and learn to cope with the reality. Just how that was best handled left some survivors feeling uncertain and wanting help to know what would make the process easier.
Adjusting to bodily changes
Survivors described a variety of bodily changes they experienced following cancer treatment that required them to make changes in their daily routines or ways of doing things. In some cases they needed to learn new skills (e.g., living with and managing an ostomy), while in others they found they were planning their routines differently. For example, bowel and bladder changes had implications for needing to be close to washrooms so they could access facilities quickly. Survivors found this restriction interfered with being away from home or actively engaging in social events.
Adjusting to dietary restrictions or changes in taste, appetite, or ability to swallow created challenges for many survivors. Most found they had to experiment to find what worked for them and what created difficulties. Some were no longer able to eat favourite foods, eat out of their own home with friends or in restaurants, or enjoy what they were eating.
Learning how to live with physical restrictions and mobility issues also presented challenges. Fatigue, pain, neuropathy and issues with imbalance, and reduced capacity to walk because of leg weakness were described by many survivors, some of whom had not seen improvements over the time since the end of their treatment. They perceived their situations would continue and required considerable alterations in how they did things, dependence on others, and “getting used to the situation.” In some cases, survivors were not certain if the restrictions were entirely because of cancer or were because of other comorbid conditions (i.e., advancing arthritis).
Difficulty sleeping developed for many survivors, although a range of reasons were offered, including hot flashes, anxiety, and pain. The lack of sleep contributed to the sense of fatigue and exhaustion survivors experienced and a reduction in the energy to cope with what was happening to them.
Wearing a prosthesis or wig also demanded adjustment and many survivors struggled finding appropriate clothing. Survivors felt their clothes were not fitting properly (e.g., weight gain or loss) or accommodating the prosthesis or ostomies. Adjusting to the changes in physical appearance and finding a level of comfort with their situation could be difficult.
Finally, some survivors experienced a profound sense of social isolation because of their status as a cancer survivor and the types of bodily changes with which they are dealing. Reduced social engagement or family and friends not being available to support them contributed to this sense of “being alone.” A few survivors indicated having access to “someone to talk to about all this” would be beneficial. One survivor captured the sentiment with the following comment:
Not sure what I wanted, just an odd feeling of now working my way back to ‘normal” life. It would be useful to have had a conversation with a “counsellor” after that last treatment, just to confirm “here’s what’s next for you, what else can we do for you”. I guess I was looking for some kind of closure to all of what had gone on. (#1167 Q33 SASK)
PATIENT AND FAMILY RESOURCES.
American Cancer Society. Survivorship: During and after treatment. https://www.cancer.org/treatment/survivorship-during-and-after-treatment.html
Canadian Cancer Society. After treatment ends. http://www.cancer.ca/en/cancer-information/living-with-cancer/after-treatment-ends/?region=on
IMPLICATIONS FOR ONCOLOGY NURSING PRACTICE
The Transitions Study provided opportunity to learn from a large sample of Canadian cancer survivors about their experiences and gain an appreciation for the types of changes they were handling following completion of treatment. The struggles survivors reported regarding their adaption to lifestyle changes provide support that this consequence of treatment should be a focus for care of survivors. Oncology nurses are in an ideal position to support individuals with regards to this challenging aftermath of being treated for cancer.
Based on the perspectives shared by the respondents in the study, patients and survivors ought to be informed regarding the possibility of lifestyle changes during the teaching about side effects prior to treatment. They should also be alerted to the possibilities during preparation for the transition following cancer treatment. Ongoing monitoring of survivors’ status ought to include attention to whether the individual is experiencing lifestyle changes or if any changes are a source of concern for the person. Asking about lifestyle changes and their impact on daily activities can be a signal to the person that it is relevant to share their concerns with oncology nurses.
Should an individual be struggling with lifestyle changes, oncology nurses can provide support by acknowledging the reality of the struggle and discussing what actions the person would like to take that might reduce the burden they are experiencing. Helping the person understand what is happening is important, as well as sharing the message that they do not have to feel alone or isolated in the experience. Those individuals who are striving for a return to their previous lifestyle when there is clear evidence this is not apt to be possible, may need gentle conversations about their physical status and expectations for recovery. Assistance in adjusting to the reality of a ‘new normal’ may need to be a focus of discussion with the individual. It could also be helpful to share information about strategies that could be useful in coping with the various bodily changes and physical restrictions, resources that are available (see insert for resources for patients), or what referrals are possible for further instruction or counselling.
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