Introduction to Fatigue
Fatigue can occur secondary to several chronic conditions such as Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson Disease, Stroke, Brain Injury, Lyme Disease and Post-Cancer.
Cancer related fatigue has been described as the most frequent issue related to cancer, during and beyond treatment. Cancer Fatigue is far more common in post-cancer clients that you might think. Up to 99% of clients experience moderate levels of fatigue following chemotherapy and / or radiotherapy. Evidence suggests that fatigue symptoms can persist for some time in up to 60% of clients after the conclusion of treatment.
A growing number of people with cancer are achieving periods of long-term remission, which is fantastic news!! The problem with this is that there has not been a lot of consideration about the needs of people for whom fatigue remains a serious ongoing concern. This is a developing area in the post-cancer rehabilitation field.
Given that Cancer Fatigue is increasingly being accepted as a potential long-term side effect of cancer treatments, more efforts are being made in the past few years to determine ways to best screen, assess and manage fatigue. In fact, in 2015, the American Society of Clinical Oncology has adapted their guidelines for screening, assessment and management of fatigue in adult survivors of cancer.
Efforts are also being made to educate both clients and health professionals. Clients have found that their health professionals lack knowledge about Cancer Fatigue and that they often have confusing or conflicting messages from health professionals about how to manage their fatigue.
Some of the comments we have heard here at Purple Co include:
“I’ve been to the doctor, he says just rest. He just totally ignores it. I’ve been quite a few times about my fatigue and all I just get are blood tests.”
“Do exercise and lose weight”, and then another nurse said, “don’t do too much too soon.”
Effects of Fatigue
Researchers are still investigating how to best define Cancer Fatigue. As more research is completed, the more it becomes apparent that Cancer Fatigue is a multidimensional concept. Client quotes across many studies suggest that fatigue in cancer is different than any fatigue or tiredness experienced prior to cancer and its treatment. It is more intense, less predictable, longer lasting and more problematic. Clients state that fatigue impacts every aspect of their lives, and has physical, emotional, cognitive and social impacts.
It is important to recognize that fatigue is a legitimate symptom and requires real, evidence based management strategies.
The Impact of Fatigue
Fatigue is difficult for others such as family, friends and work colleagues to understand and appreciate. As a result, it can cause disruption in relationships. This is an insightful quote from a client:
“Fatigue just seeps into every part of your life. It doesn’t just affect one thing, or two things. It affects my relationship with my kids, my relationship with my husband, my relationship with my friends.”
People who have undergone cancer treatment often feel like family and friends underestimate their level of recovery because fatigue is often invisible, this is how a client explained it to us:
“At work, they think ‘oh your hair has grown back, you’re way out of treatment – but that can give a false impression because everybody thinks you’re fine now”.
Fatigue can impact people’s ability to participate in chosen activities whether they are obligatory in nature or activities for enjoyment. Some clients find that they withdraw from social activities.
Fatigue can have an emotional impact; and make it more difficult to cope with stress. Increases in stress can also impact fatigue. And we all know that stress is unavoidable.
With more and more people surviving cancer, we will have more and more people who will struggle with this very real and often disabling experience of fatigue and is simply not relived by more sleep, improved nutrition or losing weight.
Here at Purple Co, we observed how fatigue was causing such a significant disruption to the lives of many post cancer survivors, with much fatigue treatment being available to those who were well enough to travel to a hospital-based group program often after waiting 6 months for a place to become available. We wanted to offer an alternative especially to those people who were simply unable to access a hospital-based program.
So, we set about researching trailing, testing and refining the Post Cancer Fatigue Management Program. Our program is not a group-based program, nor is it all about diet and exercise. It aims to assist participants to reduce the impact of fatigue in their lives and the severity of fatigue in their lives. You can read more about the program here.
If you, or someone you know is living with fatigue post cancer, then please let them know they are not alone. Feel free to share this blog with them, encourage them to reach out to see how we can help.