Fatigue is one of those issues that many people living with cancer experience, but that few discuss and even fewer understand. At Shine, we know that fatigue often lasts far longer than the period when everyone expects you to be ill – if you’ve finished your treatment, friends and family often expect you to be back to normal relatively soon. And if you’re living with a chronic cancer, you might not look ill or tired, making it even more tricky to explain to people exactly why you feel so wiped out.
In this week’s blog, Sam shares her experiences of coping with fatigue, the impact is has, and how she is coping. Please share this if you can – the more people understand how tiring cancer is the better!
Guest blogger: Sam Reynolds
The first virtue in a soldier is endurance of fatigue; courage is only the second virtue.
– Napoleon Bonaparte
Living with cancer-related fatigue is like walking through quick sand. You constantly feel as if something is pulling you down or that you’re fighting a current. Whether you are going through treatment, recovering, or moving forward, once you have succumbed to the drugs and/or surgery that help your body fight the cancer, it’s as if your body has crossed a line and you can’t turn back. Fatigue is the shadow that the drugs leave behind, and I don’t think my energy levels will ever go back to what they were before cancer. I battle with this every day and have done since I first had chemotherapy eight years ago. After two rounds of radiotherapy, seven years of Tamoxifen, three operations and now Zoladex, believe me when I say that fatigue is something I have had to adapt to for a while.
One could argue that at this particular stage of my life, tiredness is very common. Running after small kids, managing your home life, holding down a job and being busy with ‘life’ makes us all feel wiped out on a daily basis. But chronic fatigue is more than this; it is a state of mind as well as a form of exhaustion. It can become a vicious circle: as the tiredness gets worse, your mood gets lower and you fall into a spiral of depression. It’s draining and cancer patients often feel isolated because suddenly the difference between normal tiredness and cancer-related fatigue (CRF) are that much bigger.
An expert panel of the National Comprehensive Cancer Network (NCCN) recently proposed the following definition of cancer-related fatigue (CRF): a common, persistent, and subjective sense of tiredness related to cancer or to treatment for cancer that interferes with usual functioning. This fatigue differs from the fatigue of everyday life, which usually is temporary and is relieved by rest. CRF is more severe, more distressing, and usually is not relieved by rest.
– Roberto Stasi MD
The effect CRF has on being a mother, a wife and my day-to-day life are huge. It has become a standard joke that I’m in bed at 9pm, though this doesn’t always mean I sleep. Insomnia can be a brutal part of fatigue, brought on by side effects of certain drugs. I experience days when I feel like my body is made of lead and I am literally dragging myself out of bed. My mood can be low and the most basic tasks feel like a marathon, yet I know some people who experience this much more severely and consistently than me.
Everyone is different and what has worked for me may not work for others. Over the last few years I have found a few tools that have helped; this hasn’t been easy and I have had to actively make changes to my routine, diet and outlook in order to cope.
One of the things I’ve recently tried is to cutting out sugar. I am not about to preach about the different diets we can all try and all the ‘nasties’ we should be avoiding, but over the last few years it has become apparent to me how much my body suffers from eating refined sugar. Being the chocoholic I am, this has been a huge sacrifice! Still, I gave it up completely a month ago and think I already feel better. In any case, giving up sugar certainly isn’t bad for you!
After my second diagnosis I did a mindfulness course and, while it was a good distraction at the time, I failed miserably at regular practice. How on earth do you manage to sit and meditate with a three year- old who doesn’t nap anymore?!
After my third diagnosis, however, I realised that the pressure I was putting on myself to meditate every day wasn’t necessary. If I did it for five minutes three times a week, that was enough. Even having five minutes in bed before falling asleep at night is better than nothing at all. I also began to appreciate that mindfulness is simply a way of standing back once in a while and taking time to breathe properly. It is a chance to have some space to oxygenate my body. This, in turn, has slowly begun to make me feel more energised and calmer at certain times.
In the same vein, yoga has also become a proactive way of helping me manage my fatigue. I’m in the process of getting into a steady and regular routine with classes but stretching and breathing deeply has also slowly started to help, especially after my most recent major surgery.
Fatigue will always be a factor in my life and I regularly find myself rebelling against it only to crash and burn as soon as my body catches up. Having an understanding network around me has been hugely important, as has honesty. I often fall into the trap of looking like I’m coping even though underneath I am paddling like hell. Charities like CRUK have a lot of information on chronic fatigue and there are loads of ways they can help you deal with it. You may feel its one step forward, two steps back but at least you’re moving forward and there is nothing wrong with a step at a time!