Gemma Hillier Moses is an elite runner, cancer survivor and founder and CEO of MOVE charity. She explains why you might get cancer-related fatigue and what to do about it.
MOVE Founder Gemma was never told that she might experience cancer related fatigue in her recovery from cancer, she was never told what it was or why it happened and she never knew how to self-manage it. Gemma struggled with it personally however she is now able to self-manage it by understanding exactly what it is, unde
rstanding how it affects her and most importantly working on self-management tools so she is in control of it.
So, let's talk about it. Let's talk about what it actually is. Let's talk about how it can make you or someone else feel and let's talk about what you can do about it.
What we need to understand first is that Cancer Related Fatigue isn't 'JUST' tiredness. It is something a lot of people struggle with and struggle to explain what it is. To understand how to deal with it, it's important to understand everything about it if you are going through treatment yourself or you know someone who has been diagnosed with cancer.
It can be very hard to explain to family/friends and even harder to justify why you are feeling this way. It can be one of the most distressing side effects of a cancer diagnosis and it can have a very negative effect on your quality of life. It can last from a few months to years after you have finished treatment and often people really struggle to understand how they can self-manage it. Cancer related fatigue is something I have had to deal with myself over the last 5 years.
People don't talk enough about cancer related fatigue. So, let's start here;
What is Cancer Related Fatigue and what is it caused by?
Cancer related fatigue is one of the most common side effects of cancer and its treatment. It is an excessive whole-body tiredness, and a constant lack of energy. Usually when you are tired a good night’s sleep can solve this tiredness and leaves you feeling better again in the morning. This doesn't happen with Cancer Related Fatigue. Cancer related fatigue usually gets better when treatment ends however it can be chronic and last for years. I have been delivering fatigue workshops with MOVE Charity recently and every single person we work with has experienced long term fatigue. Everyone we have worked with has little understanding of what it is and struggling to understand how they manage it. It can prevent someone carrying out even the simplest of daily tasks and can have a huge impact on your overall quality of life. According to Macmillan 9 out of 10 people (90%) suffer from some form of fatigue and it can affect people very differently.
Why do I get cancer related fatigue? What might it be caused by?
Cancer related fatigue may be caused by a number of different factors. Below I have highlighted some of the common things that can cause CRF. When you have a read of the below make a list of some of the things that you feel are currently affecting you. This process will help when you come to look at the interventions as it will help you identify the factors that you can't currently control and the factors that you can control.
The common causes;
MOVE Founder Gemma also gives her personal insight.
*Cancer - When I was diagnosed with cancer I could feel my body started to shut down. The day before I started treatment I felt like I could have slept every hour of the day. I felt like this during treatment as well. Cancer and its treatment can change normal protein and hormone levels that are linked to anti-inflammatory processes that can cause fatigue. Cancer cells compete with normal cells for nutrients and often at the expense of normal cell growth. Tiredness, weight loss and a decreased appetite can all be common side effects.
*Treatment and medication - Treatment destroys cells both cancer cells and healthy cells. All the bodies energy is directed towards destroying cells during this process. Treatments including chemotherapy, radiotherapy, hormonal therapy, targeted therapies and surgery can contribute to developing cancer related fatigue. CRF usually improves when you have finished treatment but can sometimes be a long-term problem. I have found mine has got better with time. It has improved even more now I have more control and I am working on the self-management interventions. There are still things I struggle to do such as have three busy weekends in a row. If I do this I usually pick up quite a bad infection of some sort. This wouldn't have affected me before I had cancer so it's still a balancing act to enable me to improve my quality of life.
*Anaemia - Anaemia is a common side effect of treatment. Red blood cells carry oxygen to fuel all the cells in the body. Too few red blood cells mean not enough oxygen to meet the body’s needs. If this level is really low you may have a blood transfusion. Your red blood cell levels should increase the further away from treatment you go but make sure you keep checking your levels when you attend your follow up appointments. It's often a good idea to keep a record of these yourself. If these levels continue to be low make sure you consultant/health professional is following this up as this is a big factor that could be making you feel fatigued.
*Low Vitamin D levels - Low Vitamin D levels can contribute to fatigue. Make sure you get your consultant to check these at your next blood test/follow up appointment.
*Side Effects of treatment - Vomiting, pain, nausea, insomnia and changes in mood can all contribute to cancer related fatigue.
*Chronic Pain - Research shows that chronic, severe pain can cause fatigue. When you experience chronic pain you are less active, you can eat less and experience low mood. These factors contribute to fatigue.
*Experience of the cancer journey - The experience of going through a cancer diagnosis and treatment can not only impact you physically but also emotionally. People often suffer from anger, anxiety, depression and post-traumatic stress. People can develop these during treatment but also years after. It is normal to feel some or these emotions but it's also important that you seek help if you are experiencing any of the above.
I didn't talk about it for a while but I now know that I experienced post-traumatic stress in the years after I finished treatment. Post-traumatic stress isn't something that's often associated with a cancer diagnosis however we are seeing it more and more. What you experience when you are diagnosed with cancer is something no one can ever prepare you for. I had nightmares and flashbacks daily. These flashbacks were vivid and intense and I wasn't prepared for this emotional stress either. People often expect you to finish treatment and then move on. It doesn't work like that. Having cancer is an extremely traumatic experience and can leave you with both physical and mental scars. These emotional aspects affect our physical well-being and can have a huge impact on our quality of life.
MOVING more is a key intervention to help manage fatigue.
*Inactivity, Decreased fitness levels, muscle wastage and sedentary lifestyles are some of the biggest factors related to cancer related fatigue. I can completely understand why people don't want to exercise during treatment and in recovery. I couldn't move out of a hospital bed for 5 days and when I finished my first 6 week of inpatient treatment I was told by a consultant I wouldn't be running a year post chemotherapy. We often aren't given the right advice or appropriate guidance to help us consider exercise as an option or how to exercise safely. Hopefully as the Founder of MOVE charity and a level 4 cancer rehab trainer I can help educate around the benefits of moving more during and after treatment and how to do this safely.
*Dehydration - Dehydration is a common cause of fatigue. Everything in the human body is made up of fluid. Dehydration is not having enough water in the body or enough in the places that need it. We should be aiming to drink between 2-3 litres of water per day. More about how to keep on top of this in my next blog.
*Nutrition choices - For your body to work effectively, to recover and to give you enough energy you need to fuel it with the right and appropriate amount of food to give you enough energy. Eating real fresh food can help our mental well-being as well as our physical health and help to balance energy levels throughout the day.
Above I have highlighted the key factors that can contribute to cancer related fatigue. Hopefully this first step has helped you gain a better understanding of CRF so you can take the first step in taking back control.
TOP TIPS TO START MOVING MORE
- Set Goals.
- Build up gradually.
- Find out what works for you. Tap into your own unique ways to become the healthiest and happiest version of yourself.
- Find a routine that works for you.
- Understand how to exercise safely.
- Schedule moving more into your day.
- Make sure you allow time to relax and recover.
- Listen to your body.
- Remember exercise is great for cancer related fatigue.
- FOCUS ON YOU. Don’t compare.
- Focus on what you CAN DO, not what you can’t.
- Take the first step to making small changes in your life.
“Every accomplishment starts with the decision to try”
Gemma Hillier Moses is an elite runner, cancer survivor and founder and CEO of MOVE charity