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‘Everything felt like a struggle for me’: myeloma survivor Neda on navigating cancer-related fatigue

Cancer fatigue can impact one’s blood cancer experience in numerous ways, and its effects can linger long after treatment ends.

Long before fifty-two-year-old Neda Master was diagnosed with stage two myeloma, she began feeling tired all the time, which is a sign of cancer-related fatigue. “I began experiencing fatigue about a year before my diagnosis. I thought it was depression,” Neda recalls.

“I was tired and listless on most days, and everything felt like a struggle for me.”

“I think there was a major psychological effect on how I was coping as well. That is, not knowing what was wrong with me probably exacerbated my health issues and increased my fatigue and listlessness.”

What is fatigue?

Fatigue is different to general tiredness, and cannot be relieved by a good night’s sleep. It feels like total exhaustion of the entire body and can be aggravated or even brought on by diseases such as cancer. Fatigue can drastically affect energy levels and interfere with all aspects of one’s life – from sleeping and eating to socialising and working.

Prior to her diagnosis, Neda grew frustrated as she wasn’t getting the answers she was seeking. This caused her to fall further into depression, anxiety, and confusion.

“I felt like I could not control what was happening to my body, like I was experiencing and feeling one reality and the rest of the world was seeing something completely different.”

“My frustration at having no real answers as to why my body was behaving in this way made me feel like I was going crazy. I was angry and frustrated at the doctors whom I had been seeing, and I was losing faith in the medical system.”

Shortly after, in April 2019, Neda was diagnosed with stage two myeloma.

When Neda commenced her 16-week induction chemotherapy treatment program, she found that her fatigue temporarily went away.

“I felt alive and full of energy. I did not experience many symptoms during [that period], but I found I was feeling more energetic, and was not breathless or exhausted.”

Neda also attributes some of this to having her initial concerns about her health ultimately validated by the medical system.

“I guess finally knowing that I had not been imagining things really helped with my mental wellbeing, contributing to my physiological wellbeing.”

Following her treatment program, Neda underwent two back-to-back stem cell transplants, which ultimately put her in remission for three years.

“Initially, after the second transplant, I felt tired but recuperated within a few months and had a lot of energy afterwards. I could go back to jogging, exercising and walking long distances.”

However, Neda’s fatigue returned shortly after, and she relapsed in June 2023.

“I began to experience cancer-related fatigue a year before I was told I had relapsed,” says Neda.

“I began feeling tired all the time, and as my health declined again, I experienced listlessness, lack of energy, fatigue, and exhaustion. I would feel tired and drained after doing something even as small as walking the dog or washing dishes.”

Neda is currently on and off myeloma treatment with the aim of getting back into remission, and still feels the effects of cancer fatigue today.

“I find that I no longer function as well as I did before I became sick, or the first two years after my initial treatment,” Neda says.

“I need extra time to do things such as university work and assessments, and a lot of time on my own to rest, recuperate, process my feelings and emotions, and allow my body to re-energise.”

“I also cannot jog, do push-ups, or walk long distances anymore. But I’m working towards getting back into some sort of exercise such as yoga, short walks and stretching exercises.”

Over the years, Neda has learnt how to manage fatigue and take back some control over her body and energy levels.

“I create to-do lists and set alarms on my phone to help remind me of what I need to get done during the day, and I try to get as much done as I can on my list for the day.”

“I have begun to engage in meditation and prayers to help manage my energy levels, sleep, concentration, focus and attention. I also re-energise by spending time with my family and friends, my Baha’i community, and taking short walks on the beach.

“I’ve also learnt to delegate, and that it is okay to ask for help and rely on others when you need it – it goes a long way in coping.”

“But most importantly, I have cultivated an attitude of gratitude to really help me with staying positive and getting on with life instead of focusing on my disease. That is also a big tool in overcoming cancer-related fatigue.”

Neda has this message for Australian blood cancer patients who are experiencing the effects of fatigue:

“I want to tell my fellow blood cancer patients that it is okay to feel tired, exhausted, or whatever else you are feeling, and to be patient with and kind to yourselves. While it’s disappointing that we cannot do things the way we used to, we can learn new ways to do things and adapt even while living with cancer-related fatigue.”

“Cultivating hope for the future, making plans, and doing things that make you happy all help reduce negative emotions, and feelings of helplessness and hopelessness.”

“Take some time out when you need to and lean on your friends and family, because they are your cheer squad and your support network.”

“And lastly, slowly and patiently try and build resilience to get back to some of the things you used to do, even if it’s in a slightly lesser capacity. Don’t give up, and to keep on trying and cultivating hope for the future. This is what is going to drive you to keep going even when you are exhausted.”