The Experience of Young Adult Cancer Patients Described Through Online Narratives

Bora Kim, MN; David Michael Gillham, PhD

Disclosures

Cancer Nurs. 2013;36(5):377-384. 

In This Article

Results

The Life Being Affected by Physical Burdens

Adverse Effects of the Treatment. A number of writers described their treatment journey, and many of them described the brutal adverse effects. One male writer described his journey as having to confront his potential mortality. During the treatment, he experienced pain, excessive fatigue, bleeding, infection, mood swings, severe or consistent pain, inability to walk, and weight gain. He wrote that he lost control over everything and many things were damaged—his life, health, body, future, friendship, dreams, time, energy, and career.

Decreased Function. Some bloggers mentioned their decreased mobility. Some had minor to major interruptions in trying to maintain their normal lives. Writers described how they could not carry out simple tasks such as taking a shower, texting, and house chores. Some writers expressed their dislike for being dependent on other people and devices.

A few writers mentioned having "chemo brain." One writer had difficulties when she needed higher reasoning, focus, concentration, and the ability to recall.

Fatigue. Many writers mentioned fatigue as an issue. One writer stated that she could barely function, and another writer would doze off without even realizing it. Another writer explained that she would sleep so much that she would wake up and realize she had missed most of an entire day.

Body Image. Many writers expressed distress from gaining weight because of the steroid therapy and decreased mobility. A few writers mentioned how their clothes no longer fit because of weight gain. One writer stated that it had affected her self-esteem. Another writer described a day she went shopping. She expressed difficulty in choosing clothes because she needed to cover asymmetrical breasts, a large scar, and toenails that had fallen off.

A number of blogs mentioned alopecia. One expressed sadness when she had to shave her remaining sparse hair.

Future Prospects and Uncertainty

Uncertainty. One writer wrote that she lost strength in her legs so substantially that she was afraid they would not recover. She also worried all the time about how she would be able to fit back into society and what opportunities would be left for her when she finished her treatment. She worried that she would not be able to relate to other people because of what she had gone through and that people would not fully understand her.

Career. One writer stated that, often, the hardest part of his cancer journey was that his life plan had to be postponed during his treatment. Being absent from personal or work-related commitments was described as the "soul rotting away" and "vacating from real world." Several writers described employment as their turning point in returning to life as it had been before cancer. One writer stated that she felt scared about not being physically able to continue working.

Physical and Psychological Isolation

Isolation. A number of blogs mentioned restrictions that hindered their social activities. One writer listed the limitations as not being able to go to restaurants, attend social events, use public transportation, be with sick people, be in a crowd, walk around construction sites, share food, have fresh fruits or vegetables, swim in rivers or lakes, or consume alcohol. One writer described the space around her as "isolated space" and she used the phrase "outside world" to describe outdoors. One writer described her bed as her little safe space, but it was also an island from which she could not escape.

Lengthy Hospital Stay. A number of writers mentioned long hospitalizations, which lasted from a few weeks to almost a month. Another writer wrote that she felt scared, overwhelmed, and depressed during her hospital stay. On the other hand, some blogs showed concern for leaving the hospital. One writer described this feeling as being "scared, confused, unsure, and worried."

Love. A few writers commented on how their cancer diagnosis affected their romantic lives. One writer commented that because he was short and pale and had scars and uneven legs, he would never be a "lady killer." Another writer discussed that she had focused only on her survival for 5 years. She was only then thinking about love and dating. She wrote that her life had been so painful that she would have been reluctant to share it with anyone. A few writers mentioned their previous loved ones leaving them during or after their cancer journey.

Feelings of Guilt

Parenthood. A few writers highlighted a sense of guilt at not being able to provide a "normal" childhood for their children. A writer stated that she had to bring her children to her appointments and treatments, and she felt guilty that spending time at hospital had become a routine for them. She worried how it might affect their lives later.

Facing One's Own Mortality and That of Others

Thoughts on their and their fellow cancer patients' death were commonly discussed in the blogs. Confronting the concept of mortality caused the writers to develop a different point of view toward their lives and the people around them. A writer described her cancer diagnosis as a "wakeup call" on her "own mortality." She wrote that her grief would never end and her death would eventually come, but she did not want her grief to constantly affect her life or cause her to avoid living it. She wrote that she wanted to accept it as a part of her life.

A number of writers wrote about those who died of cancer but nonetheless inspired them. Some expressed denial of and grief at the inspirational person's death. A writer described how he intentionally did not check his fellow cancer survivor's blog when he knew that she was in the final phase of life. Constant exposure to fellow cancer patients' deaths frequently reminded writers of their mortality.

Forming Images of Cancer and Themselves

Perceiving Cancer as a Battle. Often, survivors were described as "warriors" or cancer was referred to as the "devil," suggesting that fighting cancer is a war. A writer commented that surviving cancer requires sacrifices, such as giving up certain body parts or body part functions or needing to rely on devices to stay alive. However, some writers disliked the term survivor because, as 1 person attested, survivor is a label and has a negative image, implying an expectation of death. Similarly, another writer viewed cancer as a part of his life, not something that needed to be fought.

Being a Heroic Figure. As mentioned above, fighting against cancer was described as warfare. Not surprisingly, writers described how they were inspired by fellow cancer patients and developed a positive attitude to become survivors. On the other hand, some writers mentioned how they were viewed as a hero for being a long-term survivor, which they thought was not deserved.

Creating a Positive Attitude

Many comments were made about positivity in life during the cancer journey. One writer realized during her scariest moments of her treatment and the mourning of a loss of possibilities that what she needed was just the mere way of being herself.

One writer wrote that he could not stop being a childhood cancer survivor but he could change his lifestyle. He wrote that he would not cry, complain, talk about cancer, or fear death. Cancer had provided him a different view of life and it kept him from taking anything for granted.

Thankfulness. Many writers expressed gratitude for the support received from family, friends, loved ones, and even strangers. One writer described having a stem cell transplant from her sister as a donor. She wrote that it made her cry when she recalled how much people around her supported her and showed such depth of kindness. She was deeply moved.

Many writers described how their cancer made them appreciate things that they took for granted before. For example, a few of the writers intensely expressed their excitement and gratitude for remaining employed or being able to work.

Opinions on Their Healthcare

Negative Experiences. Issues of late diagnosis were mentioned in the blogs. One writer expressed anger and commented that if the diagnosis had been made earlier, her treatment might have been less intensive and invasive.

Writers mentioned that they were not informed about possible infertility as an adverse effect from their treatment. One writer wrote that she was not willing to have treatment if it meant compromising her ability to have children.

One writer believed that her second cancer was caused by the chemotherapy she had for her first cancer but was not fully informed about the risks at the time of her treatment.

Social Interactions on the Internet

Maintaining Social Connections. A few writers explained how the Internet helped them remain connected with their family and friends and allowed them to meet new people. For example, a writer who had to be hospitalized for a few weeks felt better after making online video calls. Another writer humorously said that it was easier being sick at home with the Internet because one was still connected to the "outside world."

Making New Friends. A writer wrote about how online community Web sites enabled her to meet other young adult cancer survivors around the world. These people became her friends, and they cared about each other. A writer expressed how grateful she was for being able to share her journey through blogs and for receiving great support from people who read her blog. She wrote that her real life continued on through her online life. One writer expressed the theme of strong companionship by referring to people from the cancer community as "brother and sister survivors," stating that they were "friends for life."

Information Network. Some writers mentioned how they sought information through the Internet. Not only did they search for information, but they also shared information on their blogs in the form of written words, video clips, pictures, links, and audio clips.

The Paradoxical Nature of Cancer Survivorship

Having Contradictory Emotions After the Cancer has Been Treated. A number of writers described their lives after remission. Often, writers receiving treatment described the remission phase as "life after cancer" or the "new normal." Many writers expressed gratitude and excitement. Another writer described how she needed to rebuild her life after remission. Another writer expressed worry when she finished her treatment. She wrote that now that her treatment completed, she did not know what to do with her life.

Despite being in remission, a number of writers described how cancer continuously affected their lives. One writer stated that there would not be a full return to the "old normal," but instead she would have a "new-old normal."

It seemed that each regular health check for cancer surveillance caused constant fear and tension. One writer wrote that whenever she came across an unexplained illness or symptom, she related it to the cancer returning.

processing....