Brief Communication: Perspectives of survivors: Coping with lifestyle adjustments following cancer diagnosis and treatment

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BRIEF COMMUNICATION

Perspectives of survivors: Coping with lifestyle adjustments following cancer diagnosis and treatment

by Margaret Fitch, RN, PhD

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 can- cer diagnosis changes a lot of things, even if, in the end, everything has gone really well. (#2048 Q33 ONT)

L

arge 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 conse- quence of cancer treatment, as reported in the Transition Study, and the result- ing 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 dis- tributed 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 can- cers; 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-de- fined 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 pri- mary 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).

Getting well again: a number of sur- vivors 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 sur- gery, chemotherapy, or radiation, the treatment was often described as leav- ing them “feeling weak and exhausted.”

As one survivor wrote, “It took all my energy just to get well again.”

AUThOR NOTEs

Margaret I. Fitch, RN, PhD, Professor (Adjunct), Bloomberg Faculty of Nursing, University of Toronto, 207 Chisholm Ave., Toronto, ON M4C 4V9

Marg.i.fitch@gmail.com

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Table 1: Survivors found lifestyle changes following cancer treatment challenging

Theme: Getting well again

• Just getting my life back & health, and looking after myself. (#108 Q33 PEI)

• Trying to go back to the person I was, but really didn’t exist anymore & realizing that would never happen. It changes who you are & how you look at the world & life. (#1175 Q33 ONT)

• Just getting back on my feet again - plus my independence. (#121 Q33 NS)

• After I completed cancer treatment, the main challenge my experienced was recovered my health. (#548 Q33 ALB) Theme: Getting back to my previous lifestyle

• Trying to live as I did before the cancer. Reinventing my lifestyle. (#1118 Q33 NB)

• It took a long time to get back to my ‘baseline’ for health. I am an active and athletic person, and found it difficult to get back to my previous shape. I found myself depressed and anxious and even embarrassed about my condition, (#602 Q33 ONT)

• Trying to get back to doing everything that I once did. (#273 Q33 NFLD)

• Going back to my normal me. (#2743 Q33 BC)

• Getting back to where I was, physically, and able to do my usual activities. (#1449 Q33 NS)

• The main challenge I experienced after completing my cancer treatment was getting back to my life with the changes to my body since cancer and my body still healing. As well as dealing with and getting my life back as a person with chronic illness and the complications to it from cancer. (#1319 Q33 ONT)

Theme: Accepting my new normal

• When I finished my treatments it was like I had been put in someone else’s body that wasn’t well and I was going to have to learn to be comfortable in my own skin. I wasn’t prepared for dealing with quality of life I was left with. My “new normal” kept changing & issues (health) kept arising. (#483 Q47 NB)

• Now that I was done treatment ... now what do I do? How to go back to work and live in my normal world again? (#1068 Q33 ONT)

• Trying to figure out a new normal. Treatment was all done everyone around me thought everything is fine, go back to work and things are fine again, but life has forever changed for me. Things are not as easy as they used to be. (#165 Q33 PEI)

• Realizing I would never be “myself” again. A ‘new normal’ is extremely difficult. (#200 Q33 NFLD)

• Adjusting activities (exercise, visits, etc.) to take account of limitations caused by the disease (e.g., need for frequent washroom visits, limiting exposure to sunshine). (#552 Q33 ONT)

• Feeling alone and stressed with how to deal with the new chapter in life and a “new normal” were particularly difficult 6 months to a year after treatment. I felt that everyone had my back during active treatment and then I was sent on my way with a pat on the back and a

“hope you survive” mentality. (#1102 Q33 NFLD)

• Trying to believe in myself and remake my life. (#1269 Q33 MAN) Theme: Adjusting to bodily changes

Living with an ostomy

• Learning to take care of the stoma. Learning to do things differently. (#1356 Q33 NB)

• Some problems with ileostomy fit & stay on still having times when my bowel is unpredictable trying to figure out diet issues. (#1945 Q33 ALB)

• Learning how to eat properly and maintain my ileostomy bag. What sports I could do w/ it. (#591 Q33 BC)

• Colon cancer has been difficult and changed my lifestyle. Dealing with a stoma is challenging. (#2058 Q33 ALB) Frequent bathroom usage

• The change in body function, i.e., irregular bowel movements. Loss of freedom, i.e. must always be near washroom. Fecal incontinence.

(#229 Q33 NB)

• They took all my colon out and hooked me up to my rectum. I still go to the bathroom 8-10 a day/being careful about what food I eat and what time of day. (#174 Q33 ONT)

• Go to the toilet every half hour. (#448 Q33 QUE)

• Life style adjustment—continually going to bathroom—embarrassing when with friends or dining out. (#1079 Q33 NS) Dietary restrictions/difficulty eating/loss of appetite

• After chemo and radiation, I have ongoing stomach and bowel issues and have ongoing problems with my digestion. I am slowly learning what I can and can’t eat in order to minimize the issues. (#320 Q33 SASK)

• The main challenge I’ve experienced after treatment, was to adapt on how I had to change my eating habits. (#159 Q33 QUE)

• Inability to taste food, difficulty in controlling throat muscles when swallowing, sometimes end up choking and coughing very hard due to something going down my airway. (#761 Q33 BC)

• I still have the odd nauseous time, and I still have problems with my taste buds and my mouth is still sore, like I have sores all through it, but there are none. I also find that foods I used to enjoy now turn my stomach, so I am having to find things that I can eat and enjoy, which is difficult, because I still can’t taste. Everyone keeps telling me that it will all return, I’m waiting. (#355 Q33 MAN) continued…

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Getting back to my previous life- style: Survivors comments categorized under this theme focused on inten- tional 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 per- form 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 sur- vivors had embraced the idea that the changes they were experiencing were a ‘new normal” and reflected a likeli- hood 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 irrevoca- ble 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 wash- rooms 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 per- ceived their situations would continue and required considerable alterations in how they did things, dependence on others, and “getting used to the situ- ation.” In some cases, survivors were not certain if the restrictions were Living with restrictions in mobility

• I am a very active person and found it difficult to adapt to the loss of physical strength, stamina, general weariness and exhaustion. (#1094 Q33 SASK)

• Concern about the future; mobility—not being able to resume “normal” activities. (#239 Q33 PEI)

• Problem of mobility, I walk very badly. (#62 Q33 QUE)

• Coming to terms with my limitations, dealing with residual pain from overactive nerves. (#1233 Q33 SASK) Lack of/insufficient sleep

• Lack of sleep, trying to organize my life back to the way it was before cancer, & worry that it will return. (#1168 Q33 NS)

• Loss of energy & ability to have good nights sleep. (#739 Q33 MAN)

• Coping with hot flashes. Hard to sleep. (#1477 Q33 BC)

• Change in my regular sleep rhythm. (#1275 Q33 ALB) Staying out of the sun/using sunscreen

• Feeling uncomfortable being able to spend time outside without worrying about my skin and sun exposure. My doctor gave general advice to stay out of the sun. (#1993 Q33 ONT)

• Constantly having to cover up and wear sunscreen whenever outside. (#2229 Q33 NS)

• Sunscreen application, all the time, trying not to “burn.” How to enjoy being outside with the family, without always worrying about sun damage. (#2853 Q33 ALB)

• Learning to live in the shade/being “sun aware.” (#3099 Q33 BC) Clothing restrictions/wearing a prosthesis

• It’s hard to get a prostheses or bra to fit properly. The prostheses slides towards the middle or moves around in the bra, also prosthesis make me sweat and my bra and clothes get soaked. ( #354 Q47 NB)

• Trying to adapt to a prosthesis! (#725 Q33 SASK)

• I look lop-sided and the choice of underwear is not very good unless you have a lot of money. (#1444 Q33 BC)

• Site of melanoma on heel reduced mobility, challenges for shoe choices. Need to wear support hose on one leg—challenged clothing choices -> increasing feelings of loss. (#2 Q33 BC)

Social isolation

• I felt fear and vulnerable. I still have days of confusion trying to deal with all these changes and get so overwhelmed I cry. (#513 Q47 NB)

• Profound awareness of my solitude, aloneness, & social isolation. Questioning the point of life & why I was spared & going to survive.

(#904 Q47 NB)

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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 rea- sons 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 osto- mies. 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 use- ful to have had a conversation with a “counsellor” after that last treat- ment, 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)

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 apprecia- tion 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 conse- quence 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 recov- ery. 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.

REFERENCEs

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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/

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