BRiC's Collective Voice: Friendships in breast cancer

BRiC is: "Immeasurable". "A connection like no others understand". "Educational, supportive, and downright hilarious."

This week our BRiC members discussed the value of friends and friendship in coping post diagnosis and beyond into survivorship.

Psychological care is lacking post breast cancer diagnosis. While medicine is doing an increasingly good job in treating physical symptoms of breast cancer, the psychological challenges post breast cancer increase once active treatment for primary BC is over. In secondary breast cancer such challenges weigh even heavier.

Research shows that the mind and body work together, so it is vital that psychological well-being is prioritised to promote better quality of life as well as keep us stronger physically.

In our discussion, almost everyone of us voiced the value of online groups such as BRiC, the 'virtual' friends we've made, stronger even when we've met in person, because we have been able to connect even more. We've cried, laughed, and held hands. A recent meetup of ours in London was spoken of as feeling like "A warm blanket" "An extended family" "An assurance that we are not alone". As many of our members highlighted BRiC has been the safest group they've ever joined.

Moving Forward courses have also provided a platform for small groups of us to stay in touch and meet up, understand each other, when it has been hard to open up to family and cancer free friends. 'Bossom Pals', 'Breast Buddies' WhatsApp groups and other names we've used to treasure our friendship. The friends we've made through Maggies, Cancer Support groups, as well as Yoga for Cancer classes have helped us enormously too.

Sadly, many of us have lost our previous friends post breast cancer, and we've had friends who've abandoned us. As such, the value of friends we make post breast cancer diagnosis becomes even more pertinent.

We can be nervous when we first meet with our new online friends in person, but we soon feel connected and understood, feeling free to talk without being judged, and to know that our friends 'get it'.

So, here is a little 'thank you' to all of us for being there, online or in person.

If you are a woman with breast cancer and are living in the UK and would like to join our group please message us here and we will get back to you.

#BRiCteam

BRiC's Collective Voice: Uncertainty, and how we cope with it, Jan 17, 2020

‘Confronting, accepting, even embracing fear, according to research, can lower uncertainty. ‘

This week we talked about uncertainty since breast cancer: how it can affect us and what strategies we’ve found useful in managing it.

A key flash point for uncertainty is once active treatment for primary cancer is finished and we are no longer attending regular appointments which give us momentum in attacking our cancer. We have time to reflect and to worry. The enormity of what we’ve experienced sinks in and we wonder what we can do to prevent recurrence or spread. Cancer does not discriminate, it pounces on those who run marathons and eat their five a day just as regularly as it seeks out those who are not as healthy in their diet or as active. We realise that our future is outside our control, and this brings feelings of guilt, why me? And what if? If we are living with secondary cancer, as many of our members are, then stability versus progression becomes our uncertainty.

One of the most uncertain times in a breast cancer diagnosis is when waiting for test results. We have all experienced the agony of this, and a few days or weeks can seem a very long time. Once we know, the uncertainty of what’s next reduces and we can get on with whatever treatment our medical teams recommend to us. Some of us like to take control by questioning and researching our treatment plans, seeking the very best way forward for our particular situation.

How can we minimise the effect of uncertainty on our mental wellbeing? For some, distraction is the key, keeping busy, with work or other activities. The downside of this is that relaxation may become difficult as intrusive thoughts ruin any attempt at taking a break. For others, peaceful reflection, mindfulness and living in the moment helps. Walking in nature and creative hobbies are absorbing popular pastimes. To realise that everything is ok in this moment, right now, works for some, but for others the uncertainty simply overwhelms the present moment. Talking about our fears and sharing experiences helps many of us. Confronting, accepting, even embracing fear, according to research, can lower uncertainty. The brain is so powerful, and the more we allow our vulnerability in and think of it as an opportunity rather than a threat, the more we can shield ourselves from the anxiety inducing effects of uncertainty. For those of us prone to anxiety, the added uncertainty of a breast cancer diagnosis has the potential to be be crippling, but many of us take a pragmatic approach and ‘just get on with it’, not allowing fears related to cancer to add any extra weight. Some of us feel angry and bewildered, and increased anxiety can lead to depression. If we can turn these strong emotions to our advantage we can find a strength and determination to change our lives for the better.

Self-care is an aspect that we embrace in our group, and members report that this attention to our own needs and wants is key to our wellbeing. Some of us make a lifestyle change following cancer, as this can help us to feel that we are doing the best we can to look after ourselves. We might eat healthier, exercise more. Some of us throw ourselves into life with renewed zest, with a feeling that we want to make the most of every moment. Some of us have the urge to give back to life, and take on charity projects or volunteer. Some of us seek out help from professionals to improve wellbeing, this could be a counsellor or a cancer support group or course. Others talk to friends (although many of us find we don’t get adequate support from those who have not had cancer, and we often stay quiet with family as we want to protect them from the worry) and spend lots of time with loved ones, and still others prefer lots of alone time and make time to relish their solitude.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comments or send us a private message.

BRiC's Collective Voice: Our values before and after BC diagnosis; Jan 12; 2020

‘Now it is about living one day at a time and being kind to ourselves, perhaps we are more spontaneous’.

For first Sunday discussion of 2020 we focused on ''Values and Behaviours'' and how these may have changed since our cancer diagnosis.

Let's start with a personal values definition. Personal values are the things that are important to us, the characteristics and behaviours that may motivate us and guide our decisions. Living by them sounds simple in theory and it should be natural to live by them, but sometimes it's not so easy.

Naz mentioned how she challenged and supported a student's 'fate' during discussions with the university board and suggested that standing up for the 'right' thing to do is a sign of truly living by our values and behaviours, like fighting someone's corner! Being bold, assertive and determined to put ourselves first, we may be bolder and heartier and find laughter. However, crying out loud is not a weakness but shows our inner strength.
Some members enjoyed personal achievements or we enjoyed treating family and friends, make donations to good causes, which gives us a sense of belonging.

We tend to worry less about material things because they are less important, silly things don't matter as we are only human, and it’s about self-acceptance, self-compassion, self-forgiveness. People and their feelings are the real meaning in our lives.

Often, we enjoy our own company which is about self-care, self-love (compassion) and happiness.

Our outlook in the workplace changes and we take action for a better work/life balance as our life is precious, just as much as the lives of those we love. Watching TV all afternoon or treating ourselves is not laziness or being extravagant, we re-frame it as self-care.
We might value making a difference to someone who needs help to live their life well, as every second counts and we put things into perspective, a bit like looking through a different 'lens'.

Planning for the future used to be an activity that was part of our daily routine, now it is about living one day at a time and being kind to ourselves, perhaps we are more spontaneous. Taking risks which we may not have dared to take previously, it’s about bending the rules. We no longer save clothes for 'Sunday' best, we now enjoy wearing them every day, as we have learned that 'NOW' is all that matters.

Appreciating every breath we take, valuing simple things in life, embracing our existence, valuing our changes and learning to accept/live with our 'new normal'.

Thank you Jan Snape for the following poem.

BRiC's Collective Voice: The Bitter Sweet Symphony of Christmas, Dec. 20, 2019

The bitter-sweet symphony of Christmas.

"I have mixed feelings about Christmas. I feel like I SHOULD be loving it, but that's not working."

This week our Sunday discussion focussed on the highs and lows of the Christmas season, and our experiences surrounding the joys and the sorrows that this season may bring for us.

While we acknowledged that Christmas is a time for celebrating joy and happiness, families coming together and sharing love and laughter, for many of us Christmas is a time that reminds us of the loved ones we've lost, to breast cancer, and our loved ones who could not be here with us. Many of us are reminded about the cancer anniversaries, when we were either diagnosed around Christmas time, having active treatment on Christmas day and/or waiting for scans and appointments around Christmas. These memories can put a dent on our 'happiness'. Some of us have just been told that our cancer has come back, and thus incurable. As such, Christmas is not a time to remind about what we've gained, but what we've lost.

For many, the pressures that build up with the expectations near Christmas are unbearable. If we have finished active treatment recently we are experiencing the side effects with greater intensity, and we will need 'me' time and space to cope with them.

Christmas brings emotions to the the surface, expectations that we are OK, when we are not. For many of us with a primary diagnosis of breast cancer, Christmas time can exaggerate our fears of recurrence, and for those of us with a secondary diagnosis it may trigger thoughts about whether this Christmas will be the last one we experience with our loved ones.

Some of our members said that they will keep Christmas simple and spend it in PJ's with close family watching TV. Others mentioned of plans to spend it with fewer people to manage expectations. Some of us have no particular plans, and others want it to be a time to reflect and be mindful of.

We conclude with one of our member's notes which we think is really poignant: "I think Christmas should be what you need it to be. Enjoy the parts you can and give you joy, and get rid of the parts that harm you".

Sending love to all of our amazing followers. We've made it to today, so can all of us.

If you are a woman with a diagnosis of breast cancer and are living in the UK please do contact us here and we can add you to our private support group.

Happy Holidays!

#BRiCteam

BRiC's Collective Voice: What have you done to make you feel proud? Dec. 14, 2019.

Our Sunday discussion this week was a little bit different; inspired by music played at the Breast Cancer Now fashion show we thought about “What have you done today to make you feel proud?”

The thoughts of our members ranged from small, but important achievements, to huge accomplishments and unusual activities. We had people raising vital funds for charities, taking part in races and walks, often overcoming aches and pains to manage it. Many of our members were proud that they had taken time out for themselves, a lazy morning lie-in or a pampering session were mentioned, a shopping trip with a friend or a special lunch treat. One lady had a fabulous photo shoot, stepping right outside her comfort zone. Some were proud of keeping up with exercise regimes or starting new ones.

There was some focus on the upcoming festivities too. One member said that she was proud to have shopped locally for Christmas gifts, supporting local businesses in her community. Another felt her biggest achievement was putting up and decorating the Christmas tree. For others the decorating was of the more traditional kind, paint and wallpaper conquered and homes refreshed.

For some members just joining in the discussion was a personal achievement, sharing with others isn’t always easy for everyone; many members are proud of our group and the friendship it fosters. On a similar theme one member talked about taking time to visit elderly neighbours and how much joy both she and they get from the visits. Many of our members take time to help others, to work with charities and give back to those who have helped them in the past. Forgiveness and “letting things go” also featured in our list of things to be proud of.

There were tales of speaking to large numbers of people, or attending events they might usually avoid. There was also talk about future plans: targets set for 2020 and ideas for ways to help others, courses to attend and things to look forward to – often things unrelated to breast cancer to move the focus in our lives. Our group has members with primary and secondary diagnoses and our achievements reflect the wide range of both physical and emotional restrictions caused by our cancer. Some members mentioned feeling proud of how they have coped with their illness and treatment, despite the difficulties they bring.

It was uplifting to hear everyone sharing the things they were proud of, achievements big and small, but all equally important and shared in an atmosphere of support and friendship.

If you are a woman in the UK who has been diagnosed with breast cancer and would like to join our private group, please add your name as a comment below or send us a private message and we will be in touch x

BRiC's Collective Voice: Putting on a Brave Face; Dec. 5. 2019.

“A brave face spares the feelings of others”

For our discussion this week we looked at keeping a brave face. Why would we put on a mask? Naz explained that there are many dimensions to this. Firstly, there is an expectation from others that we should be brave. Secondly, we may put a brave face on ourselves to say that the “new me” is just as good as before breast cancer and possibly better. Thirdly, many equate strength to endurance. Putting on a brave face can sometimes be healthy but it can also undermine the fact that we are also vulnerable. We need both strength and vulnerability to build resilience. Admitting we are vulnerable is a sign of strength.

We found that putting a brave face on is very common, although some members told us that this was impossible to do given the trauma of diagnosis of breast cancer. Many of us felt that there was a need to protect the feelings of family and friends. For one member, it was a result of a lifetime of not being allowed to express her feelings openly by her family. There were feelings that others didn’t really want to know how we were really feeling - some even felt that they were boring others by talking about their illness. A common expression was “I’m fine, thanks”. Some of us felt that we would be labelled “weak” by talking openly - one member reported being “savaged” for not being strong enough. Some were worried about our livelihood so put on a brave face with employers so that we are not disadvantaged. For some members, a brave face was helpful, distracting themselves and preventing “thinking too much” about their illness.

So how do we put on a brave face? Some of us found distraction helpful, keeping busy, working or staying active. One member told us that she tries “grabbing life, filling every moment and never allowing quiet time”. The difficulty with doing this is that all the contained emotions build up “like a pressure cooker” and many of us commented that, at some point, it felt as if everything fell apart. Another member told us that, when this happened for her, she felt bad for not dealing with the bad times well. A brave face can only last so long. Some of us told us how receiving bad news, either about themselves or friends they had met through breast cancer knocked any brave face sideways.

So, what should we be doing? One of our members had wise words - she tries to recognise when she is experiences a tough time, acknowledge it and use self care. Self care can be simple but effective - being kind to yourself and prioritising your own well being and needs. Many of us find that talking to to others who have similar experiences can really help. We feel able to to confide in our feelings and worries without the need to put on a brave face. Some of us were able to access a local support group. We all felt the support of a group like BRiC made a substantial difference in our well being, despite the fact we all live in different parts of the country.

Sometimes you just need to take the mask off.

If you are a woman in the UK who has been diagnosed with breast cancer and would like to join our private group, please add your name as a comment below or send us a private message and we will be in touch x

BRiC's Collective Voice: Exercise and Breast Cancer; Nov. 28, 2019

'Accepting our physical limitations is one of the most difficult mental challenges we face with serious illness.'

We all know that exercise is good for our bodies and our minds. It's good to raise our heartbeat, move our limbs, stretch our muscles. Exercise releases feel good chemicals into our brains and it lifts our mood. Recent research shows that exercise positively affects our brain, improving processing ability and connectivity. We just need to get up out of our chairs and move. It's as simple as that. Or is it?

This week our women, who all have a breast cancer diagnosis, some primary, some secondary, discussed exercise. It soon became clear that our personal experiences bear out the idea that being a regular exerciser does not stop us getting breast cancer. Nor can it prevent recurrence or the development of secondary cancer. There is no evidence to suggest that exercising can prevent progression of cancer either. Many of us were 'fighting fit' and still got the disease.

What exercise can do is help us to feel better about ourselves. It can assist in speeding up recovery from harsh cancer treatments and surgery, helping our bodies gain strength and heal better. Exercise can, most importantly, lift our mood. It may be the hardest thing, but to get out of our chair and move our body, whether this is a few gentle stretches or a full gym workout, will undoubtedly help us to feel less fatigued and less stressed, and better equipped to deal with daily life.

We were reminded that for many women, exercise is curtailed following a breast cancer diagnosis because of the debilitating effects of active treatment and the side effects of ongoing treatment. When getting out of bed and showering becomes a major feat, then exercise has to take a back seat. Much as many of us might like to be swimming the channel and running marathons, for many of us this just isn't possible. We do what we can, and rest when we can't.

Accepting our physical limitations is one of the most difficult mental challenges we face with serious illness. As one member put it, we need to stop beating ourselves up about what we should/shouldn't be doing. We each need to find a way to enjoy exercising in a way that supports our healing.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comment or send us a private message.