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/
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