Sunday, 9 June 2019

Weekly Discussion Summary ~ Fear

“Fear is part of us, just as having cancer is part of us.”

Resilience may be born from fear and vulnerability, if we can learn to embrace it, but when it comes to our cancer-related fears, how easy is it actually to befriend it our fear or turn it to our advantage?

This week we discussed fear, that most primitive and powerful of human emotions which drives our instinct to survive. 

Whether we have primary or secondary breast, we live with fear: women with primary breast cancer experience fear that our disease will recur. Women with secondary breast cancer fear spread or progression of the disease. For many, fear is our daily reality, and is as present as the air we breathe. Cancer-related fear feels continuous, sometimes we can put it aside, sometimes it can be overwhelming. 

Fear, Naz explained, can fuel anxiety and can be a difficult emotion to regulate because it is so intense and raw. 
Research shows that ignoring fear (by avoiding it or suppressing it), does not help us and can even lead to physical illness. Avoiding fear fuels the fire of this powerful emotion which will force its way to the surface in one way or another. In contrast, expressing our fears, though painful, can be a healthier coping mechanism. 

Fear is hard-wired into our brains, so we are on the look out for danger and by helping us to act, it keeps us safe. Fear following a breast cancer diagnosis performs a protective function by helping us to identify threats to our health and by acting to protect ourselves. However, fear can also easily take over us, preventing us from fully taking part in life. 

There was common agreement that we have all experienced a significant increase in fear as a result of cancer. Individually, the specifics of what we fear varies - we may fear treatment, which can make us poorly. We may fear the pain that the disease brings, or, we fear dying in pain. We fear relying on others to care for us. We fear hospitals, appointments and scans - so called ‘scanxiety’. Ultimately, we fear death. We fear not seeing our children grow up, or, not being here for their milestones. We fear leaving our families or our parents. At its most intense, we can feel totally overwhelmed and paralysed by fear.

The physical effects of fear can lead to debilitating physical symptoms - an upset tummy, hot and cold sweats, palpitations, headaches and even panic attacks. For some, fear increases symptoms like pain, confusing our ability to correctly interpret them.

Those of us who were already anxious shared how our breast cancer diagnosis can magnify it, sometimes leading to low mood and depression. Fatigue, caused by treatment, exacerbates our anxiety because we need to use vital mental resources to manage it, and the subsequent mental exhaustion sits on top of our physical fatigue causing us to feel like shutting down.

Cancer-related fear can spill over into other areas of our lives, making us feel generally anxious and fearful.  Our thinking can become distorted, maybe we blame ourselves for our illness or feel guilty for others’ suffering. We worry that voicing our fears might give them substance and make them come true. Some of us believe that if we have survived something as traumatic as breast cancer, then we can survive anything. Some of us feel fearless, until a niggle, a scan  reminds us of our vulnerability like a slap in the face.

For some, fear recedes with time. For others, it’s just as prominent as it was when we were first diagnosed. For a few, it gets stronger with time, as though we feel our luck will run out, especially around the so-called five year and ten year milestones. It emerged that many of us fear that the cancer is more likely to return the further on we are from diagnosis. We feel vulnerable without the reassurance of regular checks or when we are pushed back into the routine screening plans. 

How do we cope with fear?

Some of us try to notice how it feels to move through and past our fear. Some of us try to build a safe, small world where fear is absent. Some of us look to those things that we can control, our diets, our lifestyle. Some of us use our fear to fuel our fire to live as well as we can for as long as we can. Fear enhances our gratitude and the feeling that life is precious. Some of us channel fear into doing things we have up until now been too scared to risk, taking ‘a what have I got to lose?’ attitude. 

We all have days when the fear feels too much. On these days, it’s best to have some quiet time. It’s natural to fight negative emotion and put on that brave face, but acceptance is not the same thing as giving in. Although continuing on is the way many of us deal with it, we admit that it is exhausting. 

Some of us shared that our anxiety has become anticipatory. We are fearful of fear, of how fearful we are going to be at some point in the future, leading to further worry. We can become stuck, asking what’s the point in doing anything when we might not be around to see it through? Some of us feel we make all our decisions based on this fear, but knowing this helps us decide to go against what fear is telling us and get on with living. Some of us fear living more than we fear dying, and we try to live each day as if it were our last, grasping each precious moment.

When we are going through active cancer treatment, we take a ‘one day at a time’ approach. With a goal to focus on, we only deal with each step ahead and can put aside our fears for the future. We focus on what we need to do to get through and for some this means being positive about the day to day and not looking too far forward or at the bigger picture. 

For women with secondary breast cancer, every scan and appointment brings fear of progression. Many of us fear that signs of progression will not be picked up in time. Fear can also be a force for enjoying life, for living in the moment, for not sweating the small stuff. Saying ‘I’m ok, right now’ and being content with that. Fear can drive us to seek out ways of helping ourselves to be well, as we look for different options and information to help us live well. 

If we can accept our fear, breathe it out, use it to energise us, then it can be a force for change, for action, for engaging fully with all of our emotions. Information and knowledge can be empowering, and understanding our emotional responses can help us to equip ourselves to cope. Some of us allow a period of fear every now and again, wallowing in it for a limited time before we pick ourselves up and get on with it.  Others plough through the fear, knowing that worry won’t help any situation, and let the fear simmer in the background. It won’t go away, but it doesn’t have to hinder living a full life. 

Building resilience can help us to stop hiding away from life, giving us the energy and will to face the world despite our fear. Fear is part of us, just as having cancer is part of us. 

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 Facebook page. 

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