Movement and Cancer Related Fatigue
This article is a transcript from a presentation on Movement and Cancer Related Fatigue (CRF), done for the Leukaemia Foundation in April 2016. Please note that some further explanations which were given during this talk do not appear in this written version. The presentation of blood and bone cancers is very diverse, and individual expert advice should always be sought for your specific condition and circumstances. You're a snowflake.
Exercise and Sport Science Australia; find an AEP in your area register: www.essa.org.au
Katy Bowman; Biomechanist, interesting information on walking and incorporating movement into daily life: www.nutritiousmovement.com
Comfortable with Uncertainty; book by Pema Chodron: available through online booksellers
Mindfulness-Based Stress Reduction (MBSR) programs run in several locations around Melbourne, Google should be able to point you in the right direction.
Movement for those with Cancer Related Fatigue: A Practical Guide
Cancer related fatigue (CRF) is experienced almost universally by people going through treatment for all types of Cancer, and yet it is not very well studied. This is likely because is difficult to measure objectively, there are a host of interdependent variables to consider, and there is no pill for it. Furthermore the quality of research specifically on CRF and exercise is not a good as it should be, given the high prevalence of CRF. As much as exercise and CRF is under studied, what is well known is that that physical activity is the single best way to ameliorate this fatigue. Whilst it may seem counter intuitive at first, movement has a really positive effect on CRF. This much is not in doubt.
Movement works in a whole host of different ways to help the body cope with cancer treatment. You may be able to name off the top of your head some of the more familiar benefits; increased functional capacity, positive effects on red blood cell count, improved immune function, bone density, balance, mental health, self-efficacy etc. All of these things definitely contribute to ameliorating CRF, but it doesn’t fully explain just why exercise is so damn good for it. In time, I believe the answer may very well be found at the cellular level.
Research on the effect of movement on cellular function continues to redefine how we look at the relationship between exercise and health. Recent research on cell function has shown that it is the physical force associated with movement which is the principal driver for many cellular processes. So when you think about things that apparently have nothing to do with movement, like biochemistry, gene expression, cell remodeling and healing: it turns out that what drives these processes, what stimulates them, is movement. Movement stimulates cell responses, adaption and healing; or at the very least slows down degenerative change. This is particularly observable in the nervous system, which is so adaptable that parts of it can turn over in as little as two days. And since that old nervous system plays such a vital role in recovering from illness and CRF, anything that we can do to have a positive influence on it, will help us a great deal.
So we know that we have to do something. The answer to the questions “should I exercise, and is it safe to do so?” - is a pretty big YES. So then the next question is “What should I be doing?”
So we’ll start with what studies have shown…(because studies have shown that when a presenter uses the term “studies have shown” prior to saying anything, it immediately makes them appear more clever, and I figure I can use all the help I can get! So, studies have shown…)
Exercise is both safe and beneficial for the treatment of cancer related fatigue. The best approach appears to be graded exposure (gradual increase in volume) to light/moderate intensity activity. There is some suggestion that aerobic activity is more beneficial than resistance training - but this is not conclusive, so choice of movement can and should be tailored to the individual. The recommendation is to start with about 30mins per day. This does not have to be a consecutive 30mins.
Therefore, if I were tasked with making a dot-point flyer with exercise guidelines for CRF, straight from the research, it would look like this:
Graded exposure - start with a smaller volume, and slowly work up over time.
Low to moderate intensity is best - this applies to intensity, impact and load.
Do some type of aerobic exercise - walking is best.
[ Side note: the work of Katy Bowman on walking is really interesting. Some of her outdoor barefoot activities may not be suitable for those with a peripheral neuropathy, however, so do get in touch with me and ask if you are uncertain.]
- Other modes of activity can also be beneficial, can be added under supervision of an exercise physiologist familiar with oncology.
Get Support from other people with CRF - shared experiences are very valuable.
For blood and bone cancers - immune function and bone health are also key things to consider. This should be discussed with a professional.
I would also add the following points, which are not in the research specifically on CRF, but are good things to know:
Your programme should be tailored to you, with CRF taken into consideration, and not the other way around. CRF is not the only thing to consider. Don’t forget about other things that you need to address, like painful joints, old injuries, personal preferences etc.
Be consistent - For energy management and to avoid the boom/bust cycle, don’t fall into the trap of trying to do a whole lot of exercise on good days, and then being wiped out for two days after. Be as consistent as possible on both the good days and the not so good days. Obviously take time out when you are in acute treatment, as you need to.
Consider that what you are working with is not just the heart, lungs and muscles, but the nervous system.
If you are inclined to do so, try a "mindbody" activity such as Yoga or Tai Chi. Be sure to do yoga under the supervision of a highly trained teacher, as some postures can put a lot of strain on the spine, and are not suitable for those with bone cancers. Generally Iyengar yoga is a good place to start - but be sure to talk to the teacher beforehand, or find an exercise physiologist who understands yoga, and can communicate with your teacher.
Movement complexity is also very helpful for providing stimuli for the nervous system, and specifically for the brain - so learning any new skill, dancing, juggling, martial arts like tai chi, or just playing with a ball - will be helpful. It will also ensure you get a wide variety of loads going the through the body, so you are less likely to overwork one thing.
Play - playing is something that kids do so automatically. If you can find something to do that makes you laugh, or at least something that is pleasant to do, it will not only help you stick to your programme, it will add its own benefit in terms of mental wellbeing.
Make your strength work as applicable to daily life as possible. Do real world activities and movements for the maximum amount of carry-over.
Get your people on board. Talk to friends and family, and join a relevant support group through the LF.
Get some expert help. Accredited Exercise Physiologists can really make a big difference.
Do incorporate activity specifically for peripheral neuropathy. This is a tricky area that is not well covered in research, so if you are interested, please feel free to get in contact with me after today.
That is really pretty simple and straightforward. In theory.
However, if the theory is simple and straightforward, the practical implementation is often anything but. There are large gaps within the research, and a larger gap still between reading the information in the research, and actually applying it to yourself. No research study is ever going to be 100% applicable to you as an individual. And so whilst you can draw on that information, you have to fill the gaps in with your own experience. Which can be really scary because there is a lot of uncertainty there, and with uncertainty comes fear.
[Side note: learning to become comfortable with uncertainty is incredibly helpful for anyone living with a chronic illness. It is probably a useful skill for life in general as well. I would recommend the book, Comfortable with Uncertainty by Pema Chodron, for those who a readers of such things.]
Fear is a significant barrier to exercise for many - so I would like to talk about that for a bit. Acknowledge that caution is not a bad thing - you probably want to avoid public pools when you are at high risk of infection, and taking up olympic weightlifting is probably not the best idea if you’ve just had a stem cell transplant - sorry! But in most cases, the very worst thing you can do, is to do nothing. The body needs movement. Remember those physical forces that drive cell metabolism and regeneration - movement is essential for rebuilding.
And the number one thing people who come to my clinic say they are afraid of? Doing damage.
So let’s explore this concept of “doing damage” just a bit:
At my house, there is a wooden pole holding up my veranda. Twice a week I head outside and take to this pole with a hammer (what can I say, anger issues). Over the course of time, the wear and tear - or microdamage - that I inflict on this pole will have a predictable result. The damage to the material will weaken the structure, and it will eventually break under the weight of the roof. Bye-bye veranda.
During this same period, I find a better outlet for my anger issues, and I also start to do some weightlifting. Twice a week I head to the gym and do my programme. Over the course of time, the wear and tear - or microdamage - that I inflict on my body will have a predictable result. The damage to my tissues will cause the tissues to adapt and respond to the load, and my body will eventually get stronger from lifting the bar, provided that I slowly progress the load.
Can you see the the difference? Do you understand the implications of this difference?
We are so used to thinking about our body as analogous to a machine, that we can forget that it is not one. Machines are inert, biological tissue is alive.
Inert material, subjected to load, only has the capacity to withstand that load. It does not have the capacity to adapt in response to load. Once damaged, it can never repair itself or adapt. Failure is always a matter of mechanics only.
Living biological tissue, on the other hand, not only has the capacity to withstand load, but also - CRITICALLY - the ability to adapt and change in response to load. When failure happens it is a failure of process, not purely just mechanics. Note that we are not talking about an acute force trauma here, or exercise to exhaustion, but about sub-maximal loads.
We are so afraid of overstepping the mark, of doing damage, because in our mind we see our nerves and our bones like that piece of wood. We think that once the damage is done, it can never be undone. Nothing could be further from the truth.
What is more important here is not going miles out of your way to significantly restrict loading, but rather going out of your way to put things in place which will help the rebuilding process after loading - repair, recovery and growth. These are the things like nutrition, sleep, stress management etc.
So when we then talk about loading the body in this way, we can say the body has the ability to adapt and repair, but natually those processes have their limits, and these limits change in response to pathology. Think about fatigue in a healthy body vs CRF. The threshold for a useful load is going to be different. So what is acceptable practice in a healthy person, is not necessarily going to be applicable here. It is really important to get some expert help to tailor something specific to you.
So then next question is naturally: how much then? How much should I be doing? How do I know when I’m too tired? How do I judge? It is really not a simple question to answer, I really wish it were otherwise. Well meaning folks may tell you to just "listen to your body". That’s not bad advice, but what does that even mean, really? What does this advice look like, in a practical sense?
Let’s be honest, even if your body could speak, it would probably speak in a language that you wouldn’t be able to understand anyway. Furthermore, many of us spend much of our lives ignoring our bodies. The ability to suddenly “listen” isn’t going to magically appear. It is a relationship with your body that has to be cultivated. And it can be cultivated by everyone.
In order to create a relationship, and to gain back some control, you have to bring conscious attention to both your body, and your mind. If this sounds suspiciously like Mindfulness - it’s because it is.
As I mentioned before, the language of the body is purely physical. Sensations like fatigue, pain etc, are subjectively perceived as physical sensation. They are self-perceived, that is perceived purely subjectively. Which is part of why it is so difficult to study.
The narrative - the talking bit - is the domain of the thinking mind (this includes emotion, even though emotion is really closer to physical than cognitive in nature). So there is the physical aspect, the sensation that you feel, and then there is what you tell yourself about those sensations: your perception of them.
These are two different things altogether. This distinction between the actual sensation and perception of the sensation is important.
Let’s break that down in a different way:
There are two things going on here: the EXPERIENCE and the PERCEPTION of that experience.
When there is a sensation of fatigue, it is closely followed by an emotional reaction, and then a thought reaction. How we react will determine what we do, and how we feel, and in turn how our body responds. How we react is largely dependent on our perception of the sensation. Our response is like a dial through which we can turn up or down the perceived level of threat to our system, and either up- or down-regulate our fatigue response.
[Side note: If you need to be convinced about the importance of perception perhaps consider the experience of the person who is being whipped at the downtown BDSM venue (you know who you are). I am not speaking from experience here, but I dare say it is not the same as the experience of the person being beaten in a prison somewhere. The stimulus is the same, the difference is context, and perception.]
Please do not misunderstand. I’m not saying that in order to get better, you simply need to “think yourself better”. I am no fan of fluffy, superficial New Age ideology. Whilst I am sure that there are those people who can move mountains and manifest wealth with only their beliefs, for the rest of us mere mortals, some actual physical effort is also required. More’s the pity.
I think Viktor Frankl (the author of Man’s Search for Meaning), puts it rather well:
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.”
So then, here are some practical things you can do to start to incorporate mindful practices into your movement, and your day to day life:
Mindful Walking - Not walking with the purpose of getting somewhere else, but walking with the purpose of being where your are. In mindful walking, you may focus on the breath, explore the sensations in your body and the stimuli around you. Incorporate some variability of scenery and terrain. [Katy Bowman]
Have a Daily Practice - do something every day if you can, even if it is just taking some mindful breaths. Notice how your body feels from one day to the next. You will start to come to grips with your own cycles and patterns. It may be useful to keep a written record of mood, energy level and such. The best vehicle for this type of thing are those activities that were designed for this purpose: yoga and subtle martial arts (tai chi), as well as seated and walking meditations.
Observe Yourself - learn to just observe sensations without judgement. Notice the difference between the actual physical feeling of fatigue, and the story you tell yourself about that fatigue. Mindfulness-Based Stress Reduction (MBSR) programs can be a good place to start to learn some skills.
Mind and Mood - talk therapies like cognitive behavioural therapy works for some people and others prefer meditation. There is no right or wrong way, find what works best for you.
Social Support- people: support groups, family, friends, exercise buddies. Social support makes a huge difference.
Play - find enjoyment in movement if you can.