The period before and after a person is diagnosed with a disease creates the greatest uncertainty and is accompanied by a large amount of new information to be digested and acted upon.
He thought he had hemorrhoids and ignored the blood in his stool for about six months. When his wife called for an examination, doctors found that she had colon cancer that had spread to her lymph nodes.
One leg of his colon was removed in February 2020 and then chemotherapy continued until October 2021. Although many patients were able to tolerate chemotherapy, it had severe side effects. “About June or July, I started to feel like I couldn’t do it,” he said.
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According to Monique James, a psychiatrist, being sick is the first of three major categories of personality changes at the Memorial Sloan Kettering Cancer Center.
The other two involve arresting the current stage of a person’s life — such as getting married or retiring — and changing the role of loved ones.
The pre- and post-diagnosis period is the most uncertain and is accompanied by a high amount of new information to absorb and act on.
“I hear a lot about how this personality changes so quickly,” James said.
This change may be more dangerous for teenagers and young adults. “It’s different for young people because they may not have taken any medication before,” he said. “Now they come to the cancer center several times a week,” they say.
Physical changes as a result of illness and treatment can cause many patients to withdraw from regular work, family responsibilities, and recreation.
“There is hope that this will be suspended. But when you face it [uncertainty]”It can be really hard,” James said. “It can affect emotions and worries and can be very motivating for some.”
He remembers a time when cancer killed him. She spends most of her time in bed, unable to walk or bathe helplessly. One day, dressed and asked for a 20-minute assignment, he asked if he wanted to continue.
He told his wife, Nola: “I’m done. I can’t do this anymore and I want to stop chemotherapy. ”
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However, her treatment paid off, and the couple talked about wanting to be around each other and their two young children.
“The experience of feeling like I was dying was more personal than philosophical. The idea of death seemed almost appealing, “he said.” At the same time, I was at peace with my life and the philosophy of a great being. “
He completed a course of chemotherapy and returned to work as the CEO of a small software company. Before she was diagnosed with cancer, she spent a lot of time worrying about potential business problems. After her cancer experience showed her that anything could happen to her, she found peace of mind that she couldn’t control the results.
Upcoming contract negotiations, which highlighted him for weeks before he was diagnosed with cancer, are now “a meeting on my calendar at 2:00 p.m.”
When he fell ill, Aga and his wife switched roles 10 years ago and his wife was treated for cancer on her own. He said he felt weak as a caregiver and felt guilty that he needed so much support when he became ill. His treatment was pandemic, and it was not possible to support a large family.
“Swapping roles and knowing what Nola and the kids had to do hurt me,” she said. “I put you in this situation by being sick. It was really hard for me. ”
Continuous treatment and resistance to death can be very difficult and complicated, which often leads to a change in outlook on life.
After 10 months of treatment for breast cancer, 33-year-old Alicia Boulder experienced a new goal and a sense of dread.
“I have more of this blessing now than I ever wanted to be to be better and greater,” he said.
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At the time of diagnosis, Bulver, 30, felt like a different person. When he returned to work in the new department, no one knew that he was on medical leave.
“When you look bald or sick, it’s a kind of presentation,” he said. “As my hair grew and my physical ailments faded, … my scars disappeared and the world seemed to no longer see me living with it.”
The transition to the new norm will take time. Monitoring for relapse or progress is done by visiting the cancer center several times a year to scan patients, which has become commonplace every week for several months.
James says there must be some reconciliation and perhaps grief, from finding a schedule that is exempt from medical assignments to baptisms in patients ’hoods.
“The consequences of cancer are worse than the consequences,” Bulver said. “I’ve never been afraid of losing myself or knowing who I am now and my limits.”
Boulware has found a virtual support group for African Americans through the Young Survivors Coalition of the Young Breast Cancer Community. Unaware of the need for racial-based support, Boulware found a strong connection through joint struggles and expectations.
“Whether other people are talking about brain chemotherapy or being distracted from work or‘ worrying ’makes me feel good and I can continue,” he said.
Scanxiety refers to feelings of anxiety and fear around the scanning process and then waits for results.
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Other community support options include programs such as First Descents, a nonprofit group that provides free outdoor adventures for young people struggling with cancer and other serious health conditions.
Ryan O’Donoghue, CEO of First Descents, says the goal of the programs is to be a catalyst for participants to help each other.
“Our goal is to hold the space to build a natural support system,” he said. During the week-long vacation, participants travel to places they have never seen, with people they have never seen, and do things they have never done before.
The first Descents were part of two externally led research efforts.
Research has shown that weekly programs have positive psychological effects associated with anxiety, body image, lack of community, and health care management. There are some customs and rituals on each trip, including getting to know everyone’s nickname. But “we don’t want to over-subscribe,” he said. Instead, programs such as kayaking and rock climbing counteract what is offered in the clinical setting. They are a way of healing the mind and soul and reconnecting with parts of the patient’s humanity that go astray as they endure treatment.
They found it easier to return to the pattern of hardship without regular support. Contacts of cancer survivors are based on common experiences of trauma.
Retreat-style programs and community support groups encourage people to rely on their peers. They find safe places to talk about their emotions and how to travel the world as a person with cancer.
Stephanie Cheng, a palliative care physician at UCSF, saw people grow through their cancer experiences. Indeed, there is a growing field of research on post-traumatic growth, including cancer patients and survivors of other life-threatening events.
“A person can enter a deep well of stability and resilience … and find that as part of their personality, they are someone they can jump back into,” Cheng said. “The obstacles in the future are not so great.”
The process of rediscovering identity is not linear. For Boulware, the expectations of others can affect the experience.
“In the world of cancer, we often say that you are not a person who has been diagnosed in advance,” he said. “You still have all the worries of humanity and society … you have to go back to that. But you are coming back as a different person. ”
Emily Weach is a writer living in Indiana. They have been living with metastatic breast cancer since 2017. At the Young Survivors Council in Veach Bay, SHARE established a telephone support line for the MBC community through Cancer Support and completed training for advocates for the National Breast Cancer Coalition’s LEAD project. of course.