“Fatigue, we agreed, is not the same as being tired.”
In this week’s discussion we explored fatigue, a common and debilitating side-effect of treatments for primary and secondary breast cancer.
Fatigue, we agreed, is not the same as being tired. It’s a relentless feeling of living in a barrel of treacle, typified by feelings of exhaustion and burnout - physical and mental. Fatigue tells us we are muddling through on empty, our resources depleted, our energy all used up. Sleep and rest does not replenish us. Fatigue may be sudden, constant, or come in waves.
Coping with fatigue is difficult. Many of us find it hard to acknowledge that we can no longer do as much. For some fatigue is mild, for others it’s severe. Fatigue hits some of us now and again and is a minor irritation. It can stop others from working, socialising and they feel constantly unwell under its weight.
Insomnia seems a common feature of fatigue. As we become overtired, we worry about not sleeping as we lie awake. We worry that we won’t be able to work, we worry that our families will see us as shirkers, we worry that friends will get fed up with us for turning down invitations or leaving the party early.
Many of us are learning to pace ourselves. We plan fewer activities on a daily basis and schedule in times for rest. In a world where being busy is highly prized, it can be hard to slow down to our own pace. Working full time can mean me time, social time and family time is squeezed as it takes every ounce of our energy to hold down our jobs, and there’s nothing left for anything else. We don’t do as much as we used to, as much as we would like, leading to feelings of guilt and a loss of self-esteem.
Many of us noticed that the fatigue caused by surgery, and/or radiotherapy and/or chemotherapy seems to lessen over time. But after active treatment has ended, menopausal symptoms can feed into our exhaustion, either from early or treatment-related menopause, or, from taking hormonal treatment. The effects can be long lasting.
Those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be an continuous problem requiring specialist support.
Many of us have experienced the ‘boom and bust’ cycle where we feel great and do loads, only to crash afterwards and be forced to take time out. We suddenly feel totally wiped out and there’s nothing we can do except stop and rest.
The spoon theory - there’s plenty of information on this on the internet - is useful, but although it helps us understand and validate our symptoms and gives us some language with which to articulate it for others, we still feel frustrated by the times when we just can’t push through, keep going, have a little nap and then feel fine again.
Many of us described fatigue as a tiredness that is not relieved by a good night’s sleep. It can be a weariness of body but also a heaviness of mind. This, we wondered, may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This, coupled with the fear and vulnerability that accompanies a cancer diagnosis, decreases our ability to bounce back from low mood. Our brain is preoccupied with the mental trauma and cannot lend as big a hand to our physical recovery as we might like. Keeping our brains active, even when we are forced to rest, may be helpful here.
Activities can help us to manage fatigue, besides adequate rest, include physical exercise and mental relaxation. Some of us can go to the gym or go for a run, others prefer a gentle stroll in nature or a yoga session. We like to find absorbing things to do to settle and calm our minds, such as reading or creative crafts. Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. There are courses, books and apps to help us understand cycles of fatigue and this understanding can bring an awareness which can be helpful.
Explaining fatigue to others who expect us to be ok now that our cancer is behind us - and for some of us, many years behind us - feels impossible and some of us have given up trying. We just smile, say we’re fine. We decline a night out because we know that if we go, we’ll feel awful, struggle to stay awake and maybe we won’t make it to work the next day because it will just be too much for us.
We find comfort in knowing that fatigue is a common experience and that many women suffer from it. This helps us to feel that we are not “weak” or “feeble” for needing to slow down.
Exercise can help, but it needs to be gradually increased, especially for those with severe symptoms. Many of us who are fit and active still describe experiencing fatigue, and others make the effort to exercise, not to improve fatigue but because we know it is good for our health. Showing self -compassion and not beating ourselves up if we can’t exercise can help us to manage the gap between our expectations and our reality. We do our best. Here is where we share our true resilience. We know we are all different and there is no one right way to improve our wellbeing.
If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook.
Useful articles:
https://www.psychologytoday.com/gb/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend
“Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest.”
Cancer related fatigue is a well documented side effect of treatment. What's not so commonly known, except by those struggling with it, is that fatigue can continue to affect us for many years. It also appears to be less commonly known that post cancer fatigue can severely affect us, as many of us described a lack of understanding from our family and friends. For some of us, this lack of recognition was just as hard as the fatigue itself so it was a massive relief to share and to know we are not alone.
We are all women diagnosed with primary or secondary breast cancer. For women living with secondary breast cancer, ongoing treatments can lead to fatigue becoming a permanent fixture. However, this can be true for those of us living with primary breast cancer or lymphodema too. Many of us spoke about our shock at finding that we were exhausted, perhaps exactly at the time we, and those around us, might be expecting our normal energy levels to return as our active treatment is complete.
Fatigue may be debilitating to the extent that we can no longer hold down full-time jobs, and some of us have to give up work all together. Some do this happily and find a more manageable pace of life. Others are frustrated that they can't work, and for many, work is part of our self-esteem and losing it is a huge blow.
At the other end of the spectrum many women continue to live full lives which from the outside appear normal. Our struggle against fatigue becomes a daily battle requiring a delicate balancing act. For some, this means we give all our energy to our work, leaving nothing for family and ourselves. For others this means a pattern of boom and crash, where periods of activity are followed by a need to rest and recover. This may be on a daily basis or in chunks.
Fatigue is not just physical, it also tires us mentally and cognitively. The brain takes the energy it needs to get by, and this may leave it depleted, which in turn leads to mental exhaustion. When we are exhausted we may feel low, possibly depressed, and this becomes a vicious circle fuelling the fatigue.
Exercise was widely reported as being helpful in combating fatigue, with everything from swimming to running to walking to dancing to yoga to aqua aerobics to martial arts proving useful. Moving our bodies in a way which is enjoyable can be beneficial, and research into this field substantiates our experiences. Fatigue invites us to rest, but alongside sensible exercise. However, exercise is not a quick fix for many of us, and needs to be graded and gradual to avoid a boom and bust, or further episodes of illness. If exercise can be supervised to ensure levels are controlled and to reduce the risk of overdoing the activity, it seems more effective. Some of us don't exercise formally but incorporate physical activity into our routine by walking everywhere and others have active jobs.
Some of us spoke of worsening fatigue after the end of treatment, with common colds or stress causing us to flounder. A few of us have extreme fatigue with burning nerve and muscle pain. It is tempting to be very active on days when we feel good, but pacing ourselves is so important in order to avoid overdoing things on good days and subsequently crashing. Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest.
Fatigue and sleep are awkward bedfellows, with each affecting the other adversely. We spoke about our problems sleeping, which may have many causes, leading to extreme daytime tiredness. The one thing we crave is sleep, and it eludes us.
Counselling has been a help for some of us, helping us to devise coping strategies. Stopping to listen to our bodies, and pausing to breathe deeply, are useful too. Acupuncture and other complimentary therapies are helpful for some. Fatigue management clinics exist in some areas but support is not widely available. Deep breathing, relaxation, meditation are all worth trying to improve our sleep. An app called 'Untire' was recommended as a useful.
A key theme is that other people don't understand our fatigue and expect us to be back to normal. It's hard to explain and people to respond by telling us that they are exhausted too! All we can do is try to be responsive to our needs and kind to ourselves, doing what we need to do even when those around us are not empathetic.
If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via the public Facebook page.
"Many people confuse 'fatigue' with 'tiredness' but it's not the same. Fatigue is the invisible legacy of breast cancer."
Our discussion this week focused on fatigue, a significant side effect of many of the treatments of breast cancer. Fatigue affects our ability to work, relationships, family life and our social lives. Many of us described only just being able to keep our head above water in terms of doing the essentials in our lives, with no energy left for ourselves. Others shared that they have to make daily choices - a game with the children or making dinner from scratch - they can’t manage both. Some women give up work, others reduce their hours, but not everyone can.
Our discussion included women with primary and secondary breast cancer. For the latter, ongoing treatment means their fatigue is continuous and may go in cycles alongside treatment regimes which will never finish.
For many, the support they received from family and friends whilst going through active treatment falls away once treatment ends, but fatigue remains and can worsen. Many of us felt unable to explain our fatigue to others and find family and friends are impatient with our need to rest, change or cancel plans or not join in as much as we used to. We often look well but fatigue is invisible and can continue for many years and is sometimes overwhelming.
The fatigue we experience isn’t just general tiredness, it can be debilitating and is not resolved by a good night’s sleep. Fatigue affects our ability to concentrate and our mood. Many reported feeling frustrated at being unable to focus, and irritable with those close to them, tearful and over-emotional. Fatigue is exacerbated by the fact we find it difficult to get a good night’s sleep, whether disturbed by menopausal hot flushes, anxiety or the fact that being overtired can in itself inhibit restful sleep. A minor illness like a cold can knock us for six. Some of us experience pain (that in itself is tiring) along with side effects of pain alleviating medication.
We shared tips on coping with fatigue and a few common themes emerged, one of them being extra rest. Planning ahead to ensure that rest time can be fitted around other activities is important, and we often have to prioritise rest time over and above socialising. This can make it hard to keep up with 'normal' activities and leads us to feel isolated, especially as we feel people expect us to 'get back to normal.'
We heard that pacing and planning to manage energy can be key to avoid a 'boom and bust cycle' - you wake up feeling good, determined to make the most of your energy, you rush around doing all those things you've been putting off... and then crash. You're exhausted. It can help to plan in a rest day before and after a big day out, a party or family activity, or ensuring a quiet weekend follows a busy period at work. Those lucky enough can schedule an afternoon nap, or rest, others catch up on sleep at weekends. Some go to bed early in the evening, which for those at work may make us feel like we have no life.
Exercise can also help (though it can be hard to feel like exercising). Many described their strength and stamina improving by gradual increases in activity. Others described being energised by exercise, for some that means a walk round the block in their lunch hour, for others a dance or yoga class or perhaps a park run.
A diet that’s low in sugar can help, because it reduces fluctuations in energy, with vitamin supplements, as supported by their oncologist or GP, were also recommended by a number of women.
Learning to delegate and to accept that we can't do everything - at home or work. Cut corners and take short cuts, ask older children and partners to help.
Another suggestion is to take up a quiet absorbing hobby, crafting perhaps, or knitting and crocheting. Meditation and mindfulness also helped some of us to feel more at peace and less exhausted, and lowering anxiety levels helps us to sleep better at night.
So many of us are mourning our pre-cancer energy levels, our pre-cancer fitness levels and cognitive sharpness. Fatigue affects both body and mind, and adjusting to new levels and the corresponding lowering of expectations takes a lot of hard work. This, of course, contributes to fatigue, and many of us struggle with our own expectations as well as the expectations of others.
We were comforted by the fact that we realised we are not alone, and, knowing that fatigue is very commonly experienced following a breast cancer diagnosis.
If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via facebook https://www.facebook.com/resilienceinbreastcancer/
