Saturday 25 May 2019

Weekly Discussion Summary ~ Three Words to Describe Us

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Last week for our discussion we offered a challenge to our members, who are all women who have had a primary or secondary diagnosis of breast cancer: to describe yourself in three words, but when picking your three words try to be kind to yourself. For many of our members this was much more difficult than it sounds. So we suggested trying to think of three words our very best friend would use to describe us, or even actually ask a friend.

Rather than writing the usual summary, the very talented Anita took the words we came up with and produced this beautiful word cloud. 

We suggest that when you're being hard  on yourself, look at the words your friends used to describe you. Then take them. Embrace them. Accept the truth in them.

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. 

Saturday 11 May 2019

Weekly Discussion Summary ~ Fatigue

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“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. 

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Saturday 4 May 2019

Weekly Discussion Summary ~ Stress and Breast Cancer Risk

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Stress and Breast Cancer Risk

Our discussion this week focused on stress and whether we believe it has had an impact on our breast cancer, both in the original diagnosis and in ongoing incidents of recurrence or metastasis. In line with mixed evidential research, our experiences varied.

For some, a general observation that our current busy stressful lifestyles may contribute to a cancer diagnosis is convincing.  Stress may lead to a lowering of the immune system, an eat-on-the-run poor diet, little time to exercise and poor sleep. Severe stress may lead to generalised anxiety or other psychological disorders. We know that not looking after ourselves physically affects our state of mind and our wellbeing suffers when we are overwhelmed and under pressure. 

But if stress causes breast cancer then everyone who is stressed would get it wouldn’t they? They don’t. 

However, Naz told us that recent research is increasingly convincing in showing that higher levels of stress are predictive of an enhanced risk of getting breast cancer - reminding us that “risk” is not the same thing as “cause.”

We pondered over the specific stressful events that may have contributed to overall poor health - the loss of a loved one, losing a job, financial pressure, not coping at work, problems with children - the list is endless and varied. Some of us were asked about stress by our medical teams, which alerted us to question whether there could be some link. Many of us are convinced that our own personal stress was a contributing factor in their breast cancer diagnosis. A few don't believe there is any link. 

A cancer diagnosis in itself is a stressful event, and may lead to prolonged stress during treatment and beyond.  Relationship problems are common, as is financial hardship. Many of us reported feeling more stressed in general than before our diagnosis, due to the mental and physical challenges we face. A number of us reported that our diagnosis came after a period of high stress, once the stress was behind us.  A diagnosis after retirement or redundancy from a stressful job is not uncommon.

Many of us have looked back on our lifestyles pre-cancer to see what might have ‘caused’ it - this helps us to make sense of what’s happened, and although we know that it’s nonsense to blame ourselves, we do seek the answer to ‘what did I do to deserve this?’ At the end of the day no one cause is proven.  It makes common sense to take care of ourselves and looking after our own wellbeing becomes paramount for many of us. Minimising stress may be one of the choices we can make, but for many it may not be possible to keep stress levels low as life throws all sorts of stressful events at us over which we have no control.  How we react and deal with these events is within our control to a certain extent, and this is where self-care comes in. One example might be in returning to work following our treatment: it is possible to adopt a new approach, to set boundaries and decide to put ourselves first rather than allowing our work to overwhelm us.  The problem is, it’s really difficult to do. 

Some of us have attended courses on dealing with stress and these can be very helpful.  Exercise, getting enough sleep, eating well, mindfulness, yoga and meditation can all facilitate wellbeing, and it’s when we are very stressed and all our usual self-care routines go out the window that we need these the most.  When we are stressed we feel out of control, and sometimes small acts that allow us to feel more in control can really help, perhaps a ten minute walk or three minutes of deep breathing. Finding ways to minimise our stress can help us to feel that we are doing our best to prevent a recurrence or spread of a primary diagnosis, and to stay stable and prevent progression of a secondary 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.