Monday, 11 November 2019
BRiC's Collective Voice: Complementary Therapies and Resilience; Aug. 28, 2019.
Why some emotions are harder to experience after Breast cancer Diagnosis
'The uncertainty we are left
with, the ambiguity we are trying to process, the side effects we have to deal
with and the positivity we need to live up to. There is so much going on.'
Why are some emotions harder to experience after a breast cancer diagnosis, and others easier? Does it have something to do with protecting us from emotional distress?
As you might expect from a group of women who have all had a breast cancer diagnosis, some primary and some secondary, we all find intense emotion triggered by hearing about cancer, reading about cancer, talking about cancer, even adverts about cancer on tv. What surprises us, sometimes, is the unexpected rush of head-on emotion that we are confronted with, often when we are in situations which make it difficult to deal with. Some of us described having to withdraw from situations or conversations in order to take a few deep breaths to stabilise ourselves, to manage the threatening panic that wells up inside us. Our post-cancer brain is on high alert and wants us to run away from anything cancer related, flight being preferable to fight in social situations where we need to maintain our decorum.
The trauma that is caused by a breast cancer diagnosis weighs heavily on the brain. We want to make sense of what we’ve been through, we want to come to terms with it and its impact, but sometimes our need to process what’s happened is just too much for us to cope with in the moment. At these times, our brains will simply shut off the experience and we find ourselves numb and dissociated, distanced from our own suffering in order to allow our broken brain to deal with whatever is in front of us. Our fear is so intense that the brain builds a wall which is a barrier to our emotions. Sometimes we break through the wall, and as time goes on we may find emotions hit us like a train, causing upset that demands we plug the hole in the barrier and leave the emotions firmly shut away from view. As a result we may find ourselves living with conflict and contradictions in our own head, wanting to understand, accept and even make friends with our experience, yet being unable to face the fear which threatens to overwhelm us. Our feelings may become out of synch with our current experience, with sadness flowing over us when we are in beautiful surroundings or living with continuous low level anxiety.
Our members described a huge raft of different emotions which we struggle with, not least anger which sits alongside the cry of why me? Why can’t I move on? Guilt at surviving, guilt at the pain our cancer causes others. We are angry that we didn’t get the support we expected and needed during treatment, that we are not getting the support we need now. We are angry that our bodies let us down.
Self-awareness is strong for our members, many of us having worked with counsellors and psychotherapists in order to process our experience of breast cancer. However, self-awareness may not be enough as our brains will act to protect us without us knowing and this can cause confusion and can lead to depression. A downward spiral of feelings we can’t own or process that overtakes any rationality, with fear dominating our waking thoughts. Our fear may lead us to disengage from anything that forces us to feel strong emotion and we find ourselves living at arm’s length from our feelings and distancing ourselves from life rather than immersing ourselves. Some of us reported evaluating our emotional experience rather than allowing the emotion just to be there. Living in black and white rather than in colour.
There is an external pressure to put on a brave face, to be positive, all the time. However many of us don’t feel positive about our cancer, although we can be positive about the day to day of our lives. The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on. On the outside, we are smiling, positive, in control. On the inside, we may be isolated, lonely, terrified, sad.
We may be at our most vulnerable at the end of treatment for primary breast cancer. The chemotherapy, surgery, radiotherapy is finished. We are sent away, possibly with a packet of pills depending on what type of cancer we have, to get on with it. The structure provided by appointments is gone. Now we have time to think, time to process what we’ve just been through. Our emotions are heightened, just as everyone around us is congratulating us for being brave, lucky, strong (and all the other platitudes) and aren’t we glad we can get back to normal life now? It’s very common for depression to hit us like a stone and we may feel totally bewildered. We may find it hard to sit and think about our cancer, as thinking about it makes it real, and while we were on the treatment rollercoaster we didn’t have to acknowledge it was happening to us, we were just doing as we were told, not feeling very much at all, we were too busy.
Many members commented on how
useful it is to have the safe space that is our private group where we can tell
it like it is with no fear of upsetting anyone. We all want to protect our
loved ones from how we really feel, we don’t want them to be feeling our fear.
In time, many of us are coming to terms with what has happened to our bodies
and the mental scars left behind. As one member put it: we move on to find joy
in the simpler things despite being quick to anger. The depth of our emotion
means we can move from elation to sadness in a heartbeat, holding both together
with our fragility.
We may be broken, but we are here.
BRiC's Collective Voice: Crying: It's benefits; 28 Aug. 2019
BRiC's Collective Voice. Mindfulness: Its benefits and drawbacks. Aug. 2, 2019
‘a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique.’
Sunday, 21 July 2019
BRiC's Collective Voice: Moving forward
A breast cancer diagnosis can be traumatic and leave us at one extreme numb, or at the other, overwhelmed by our emotion. A diagnosis of secondary breast cancer even more so. This week our discussion focused on what we have found helpful in moving forward: things we have done, things we have changed.
Moving forward, for those of us with secondary breast cancer, means living with cancer on a day to day basis, knowing that treatment will be ongoing. For those recovering from a primary diagnosis, it's about gaining physical and mental strength with which to live our best lives alongside the ever present fear that our cancer will spread or recur.
Our women have found many things helpful, both practical and attitudinal. After the shattered self-confidence which accompanies harsh treatment, learning self-respect, to value ourselves, damaged as we may be, is key. We find that practising self-compassion is vital, as we try to look after ourselves well, allowing ourselves little breaks, treats, gifts to ourselves. We give ourselves a symbolic hug regularly by spoiling ourselves, just a little bit.
Exercise is very important for all of us. For some, this is a few stretches following surgery, a totter round the house, a gentle stroll up the road. For others, it's a run, a climb, a hike, a physical challenge that says to the world, here I am, look, I can still cut it! Despite cancer, despite extreme fatigue, medication side effects, I'm here, moving to the very best of my ability, even if it isn't as much as I could do before.
We pay attention to our diet, drinking more water, eating well. This helps us physically and mentally with mood stability.
We are more accepting, less questioning. We see the bigger picture, we no longer sweat the small stuff, although it's the small stuff for which we are hugely grateful and our awareness of that increases. We notice more. We are open and determined and we do things our way, less affected by what others think.
For some, setting personal goals and challenges is key to moving forward, this allows us to push forward, to help design our own futures. It's the challenge that is the triumph, not the outcome. If we make up our minds not to be limited, we can stretch ourselves a little further each day.
For others, slowing down and being less busy is what helps us move towards an inner peace, using perhaps meditation or writing, making choices which allow us to experience life in a more reflective way.
We learn that stress may be self-imposed and we learn to say no, we learn not to worry about things we can't influence. We are more relaxed about what we can and can't do and can let go of getting it all done straight away, allowing things to wait and knowing that we've done our best, that it's good enough.
Some of us have tidied up our lives, de cluttering our homes alongside our lives. We want our surroundings to support us not hinder us. We tidy up our friends list too, seeing more of the people who support us and make us feel good.
For those of us with secondary breast cancer, there may be an intense desire to re-prioritise and doing what we want to do with our lives becomes more urgent. These may be big things like travelling, getting married. Most of all we want to spend time with the people we love.
Others may say to us 'Live every day like it's your last' and some of us want to to tick off bucket list items and off we go, cramming it in and making as many memories as we can. For others, it's a gentler approach, perhaps involving living a life much the same as prior to diagnosis, thinking about careers, studying, always having a self improvement goal to reach for. We might change our jobs, reinvent ourselves in new careers which may be more challenging or perhaps less demanding. We might retire, go part-time. We might find a creative outlet or take up voluntary work. We might get a pet or take up a new hobby. It's about finding a balance, really understanding what we want from life, and making it happen. It's about changing the things we can change rather than wasting energy on the things we can't change.
Many women talked about how hard it it to make the adjustments needed to move on, whether that's after primary treatment or following a secondary diagnosis. One thing is clear, with support our members are all making progress, and we are dedicated to helping one another build the resilience needed not only to cope, but to thrive.
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.
Monday, 15 July 2019
Weekly Discussion Summary ~ The loneliness of cancer
Saturday, 6 July 2019
Weekly Discussion Summary ~ Exercise
This week our discussion focused on exercise, particularly dance, and how it can help us to feel and cope better with the side effects of cancer and it’s treatment.
The benefits of exercise as part of a healthy lifestyle are well documented, and it makes common sense that a fit body will contribute to a resilient mind. Our group, which is made up of women with both primary and secondary breast cancer diagnoses, were interested in the specific ways in which dance and exercise help us to feel better.
Naz explained that exercise may lead us to feel more positive, energised and lighter. Our brains work more efficiently and this, in turn, can lead to better emotional regulation. Exercise can lift our spirits as it releases neurotransmitters in the brain which increase the brain’s reward responsiveness, which may become dormant when we are depressed.
We shared how we had used exercise, relied on exercise, tried exercise for the first time, given up and restarted exercise, become positively addicted to exercise. Some of us stopped exercising during treatment - either because we felt too poorly, or as rest became a priority, some of us continued as much as we could, while others stuck to a gentle toned down routine.
For those of us who love exercise and have a strong routine, a breast cancer diagnosis can be extremely frustrating as we may have to modify both frequency and intensity. Treatments like chemotherapy and radiotherapy may put a stop to exercise, and fatigue is a very common problem. When we feel weary, forcing ourselves to get up and move is difficult but may be as energising as rest, and many reported feeling lethargic when they missed a few days of exercise.
For many of us, exercise is a pleasurable part of our lives. It may be running or walking, swimming, yoga, horse riding, sailing, gardening, cycling, climbing, rowing, caving, dancing. Any activity that involves repetitive movement can be helpful on many levels. It can also be a mindful meditative practice, calming the mind while working the body. More challenging activities that require co-ordination of mind and body, such as more formal dance where we are learning steps and routines, are an excellent mental as well as physical workout.
The joy of moving our bodies to movement is evident in the comments from those of us who participate in dance. We listed ballroom, tap, ballet, disco, belly & salsa, and many of us have trained for medals and performances, adding the extra dimension of formally recognised achievements to the mix. Zumba is increasingly popular, and many different fitness through dance classes are now available. Music touches us emotionally and dancing brings our bodies closer to our brains and increases the fitness of both. It brings a sense of freedom as we lose ourselves in the music and move, as well as discipline as we learn new moves. Dancing to the radio whilst doing the household chores is also very popular for us!
We reported feelings of wellbeing associated with all types of exercise, including a sense of release, of alleviating worries and anxieties. Team games can help with feeling cameraderie, a part of something. Exercise has brought a better night’s sleep for many of us, helping us to feel physically refreshed and rested. Many find it’s helpful in managing anxiety.
Some of us are continually frustrated that since being diagnosed with cancer we are unable to exercise as much as we used to, with some activities proving impossible due to fatigue, aches and pains, and lymphodema (swelling in the armpits, chest and arms as a result of breast cancer treatment.) We felt that there is a need for advice and physiotherapy to help us and offer individually tailored advice.
Although finding it hard to accept the changes in activity levels forced upon us by cancer, or by the side-effects of our treatment, we are all focused on what we can do rather than what we can't do. We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one. We keep trying, we stumble, we start again, we never give up. When we feel weary and beaten, a gentle stroll around the block can completely change our mood.
A breast cancer diagnosis can undermine our confidence, and our eagerness to join in with group exercise can wane as a result. However exercise can also help to rebuild that lost confidence, and many of us have managed to join classes, gyms or teams. For others, walking in nature with friends, a dog or on our own provides peace and calm, and escape from the hustle and bustle of everyday life.
A breast cancer diagnosis brings fear and anxiety. For some of us there comes the question - what’s the point? We may put all sorts of things on hold, including our exercise regimes, while we recover physically and emotionally from the trauma of our diagnosis. Once active treatment is complete, many but not all of us, reported that feeling able to get back on track and exercising again can feel like one step on the path towards feeling good again.
Exercise related goals and achievements can make us feel good about ourselves, whether we complete a marathon or manage 10,000 steps a day, it doesn’t matter. There may be days when getting off the sofa and shuffling round the house may be a huge effort, and when we have down days, moving can really help us feel we’ve accomplished something good.
As an extra positive, a few of our members were inspired by our discussion to get out there and exercise after and reported back about how much better they felt. However hard it feels initially, moving our bodies undoubtedly helps our minds to function better, so making the effort to find something we love to do is well worth the effort.
If you’re 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.