Weekly Discussion Summary ~ Chemo Brain 2

This week the focus of our discussion was chemo-brain, a catch-all term for the 'brain fog' that many women experience post cancer diagnosis. Commonly attributed to the after-effects of chemotherapy and trauma, it may also be present for those who have not had chemotherapy, and in the longer term, hormone treatments and fatigue may also be contributors.

Chemo-brain has long been a controversial issue, however recent research has provided evidence to substantiate brain changes which are significant enough to show up on scans. Our members provided consistent anecdotal evidence for these changes.

Women at various points following a breast cancer diagnosis (our group supports women with both primary and secondary diagnoses) reported living in a brain fog and being unable to function as well as they did before. For many, this leads to frustration and anxiety, with many feeling less competent at work and in their home lives. A resulting loss of confidence was reported by many, with those who have to attend meetings at work struggling particularly. 

We forget names, we lose track of conversation, we feel lost and foolish when memory incidents affect us in public, although most of us are able to laugh at ourselves too! We are unable to spell, write, read, perform basic maths or remember why we walked into a room. Some have found clean washing in the fridge and have picked up other people’s keys in an effort to remember their own. Some have fallen, dropped things, knocked things over. Having a foggy mind can lead to a clumsy body, which may not be such a laughing matter. 

We make lists, use our phone alerts, take copious notes, muddle through. Sometimes those around us are sympathetic but many of us have experienced the frustration of others as they find us different to how we used to be. Some women practise letting go and have found some comfort in acceptance, feeling pleased that they can drop the veneer of being in strict control.

A key point made by several women is that they worry that their forgetfulness may come across as rude or uncaring. Many are hard on themselves, others more able to go with the flow. Some spoke of increased anxiety, others noted a reduction. All those who contributed reported a significant change in their ability to think clearly and a difficulty in adapting to their new state of mind.

Despite these troubling experiences, Naz was quick to point out that there is help at hand. The brain has a plasticity that can be altered by cognitive exercises, and mindfulness and relaxation can be very helpful. Strengthening neural pathways via systematic cognitive practices may help us to rebuild the weakened parts of our brains.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact us by Facebook message https://www.facebook.com/resilienceinbreastcancer/

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Our thanks to Amanda for this lovely photo. 

Weekly Discussion Summary ~ Grief and Resilience

Have you experienced grief following breast cancer?

In our weekly discussion we explored the relationship between grief and resilience. 

Grief, because it involves sadness, crying, hopelessness and even depression, can be seen as a ‘negative’ emotion. We seldom encounter a conversation that encourages us to grieve over a significant loss and instead we are encouraged to move forwards.

Our discussion revealed the many ways women with primary and secondary breast cancer experience loss - the loss of a once care-free life; of normality, of womanhood and sexuality, others described losses associated with the side-effects of treatment, others spoke about the loss of a career and those of us living with secondary breast cancer described grieving for others, or the loss of hope for a future with loved ones.

Many of us described putting on a ‘brave face’ or being ‘positive.’ Some of us were surprised to find that we had not thought about grief in relation to our experience of breast cancer. Those of us who had experienced the loss of a loved one found ourselves comparing our bereavement with our experience of breast cancer and we heard that experiencing a bereavement while dealing with the emotional impact of breast cancer shaped and coloured women’s experience of grief in profound ways. 

The numbness and detachment we commonly experience are our body's defence mechanisms which help protect us and cope with the agonising pain. For some of us, the overwhelming instinct to avoid any painful feelings continues - some of us shared that we did not know how to grieve, either because we were afraid of the depth of our feelings, or because we wanted to protect our loved ones.

Naz told us that recent research has shown that grieving after trauma and significant loss allows us to heal. Recent studies looking at the longitudinal effect of trauma on physical and mental health have concluded that those who managed to grieve for significant periods of time were in better health physically and emotionally in the long run. A process of grieving helps us to come to terms with our losses. To do this, we rely on our cognitive functions which help us to regulate our emotions and as we know only too well, run high in the face of the uncertainty and trauma that accompanies the rollercoaster of breast cancer.

Minimising the traumatising effects of breast cancer and the pressure to be so-called positive - for those of who have finished active treatment, this might mean, putting the ‘cancer chapter’ behind us to move forward; for those of us with secondary breast cancer, this might mean we have to completely deny the reality of our situation - can interrupt the grieving process, increasing our emotional vulnerability to distress, anxiety and depression.

Grieving after loss does not mean that we put our lives on hold and get stuck – it opens the way for curiosity, exploring an emotionally rich life that acknowledges our sorrows, releases tension moving us towards resilience and flexibility. It helps us adjust. It helps us to heal.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

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Many thanks to Vicky for allowing us to use this beautiful image.

Weekly Discussion Summary ~ Improving Physical Health

Steps to improving our physical health after a diagnosis of breast cancer

Our discussion this week looked at how we have tried to improve our physical health after a diagnosis of breast cancer. In the introduction, Naz explained that there is evidence that improving diet and taking exercise can improve the after effects of treatment for breast cancer, particularly fatigue. 

We discussed the techniques we have used and whether they helped in the longer term. There was a feeling from a number of us that our bodies had let us down in developing cancer. For some of us, that came as a shock after not taking much notice of our bodies which had up till then been reliable and healthy; for others it felt a betrayal of a life of good diet and exercise. 

Most of us had changed our approach to exercise and to a lesser degree diet after breast cancer. For some, exercise incorporating mindfulness was helpful - for example yoga, dancing, walking our dogs. For some, more active forms of exercise such as swimming, running and cycling were useful. It seemed important to ladies with secondary cancer to maintain some fitness and exercise through often continuous treatment where possible.

Some of us used fitness trackers such as FitBits; others felt they added too much pressure and could result in fatigue. Many of us had experienced a crash in energy levels after trying to increase activity levels too quickly and there was a strong theme of pacing ourselves.

There was less discussion of dietary changes interestingly although some of us had radically changed our diets or had added a regime of supplements. Slimming clubs were helpful to some but others found them judgemental. 

There are clearly many ways to move forward with physical health and it feels an important topic for us - not least in that it allows us to regain some control over a body which has betrayed us.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

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Weekly Discussion Summary ~ Building Psychological Well-being

Our discussion this week was linked to Mental Health Awareness Week ~ we asked: what are the things that have helped build our mental flexibility and psychological well-being post diagnosis, and how have they benefited us?

Seeking help to support our psychological well-being involved many pathways: from mindfulness meditation, exercise, yoga, CBT, acupuncture, reflexology, hypnotherapy as well as anti-depressants…. Naz told us that there is a whole diverse literature emerging, though sparse evidence has substantiated the effectiveness of complementary therapies.

Importantly, the mechanisms by which they work are unknown, partly explaining why we haven’t been able to develop more targeted interventions. We do know that exercise releases feel-good hormones and the link between mind and body isn’t under dispute.

The majority of those who took part in our discussion had sought support for their mental health and general well-being in some shape or form, and many have taken up new challenges and hobbies. Strong themes of taking control of health and fitness, peace of mind and well-being emerged, although with modification as many of us find ourselves unable to pick up where we left off at diagnosis in terms of demanding jobs and stressful lifestyles.

Fatigue is an issue for so many, and limits energy and often the enthusiasm for high maintenance mental and physical regimes. As the trauma of a breast cancer diagnosis leads to a reassessment of priorities, so a measure of balance is often preferred to being over-busy. Learning to relax, rest, and perhaps meditate, is a huge challenge in our driven high-achieving superwoman society. The strongest message coming from the discussion is the desire to find what works, and to draw mental strength from it.

A common story from our women is that while in active treatment they were coping well, moving from appointment to appointment, dealing with harsh side effects and adjusting to the fact of their diagnosis. Some worked through treatment as a distraction, others took time off, and for most it was just a case of getting through it. Once active treatment has finished and there is time for reflection, many women find themselves unhinged and vulnerable, unsure of themselves and their capabilities. Physical changes, mental fog, an uncertain future – all contribute to a particular type of post-traumatic stress.

Our wonderful women have found, or are finding their way through all of this, and their strategies are as diverse and unique as they are. They run and write poetry, they meditate and try hypnotherapy, they learn mindfulness and create with glass. They take up dancing, learn to swim, have a go at art therapy, try yoga, Nordic walking or join a choir. They make jewellery, care for their children, or grandchildren, they walk in nature, read a book, write a book. Many of us described experiencing anxiety, low mood and some of us depression, and while medication has its place, it is interesting to note how many women were determined to deal with it by other means than medication.

Counselling is a popular choice, though some of us had found it hard to access appropriate services. It was valued most when available via Macmillan or support centres and many found it helpful to have an objective space in which to process their feelings and come to terms with their experiences. It’s common not to want to share everything with friends and family for fear of upsetting them, and of course groups such as ours come into their own here too. Our discussion included women with primary and secondary diagnoses, and an important factor for our members with secondary breast cancer is to find activities which allow them to live their lives without being constantly reminded about cancer. We all relish ordinary stuff like hanging out with friends and family as well as seeking support from specialist organisations.

What shines through our discussion is our determination and grit, our desire to find a new normal after diagnosis and to live each day as well as we can.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

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With thanks to Marie for her lovely photo!

Imposter Syndrome ~ Andria

Mr Darcy told Bridget Jones that he ‘liked her just the way she was’.  I have often wished that I could like me just the way I was and that wish started way before the cancer diagnosis.

It was only recently after reading an article (in The BRiC Centre's group) about expectations of women dictated by society as well as the individual women and how the continuing striving to be the perfect wife, mother, professional etc. is starting to take its toll on physical and mental health.

In this article it mentioned ‘Imposter Syndrome’, the pressure that we place on ourselves to be perfect and the worry that we will be found out to be flawed in some way. I was able to relate to this feeling in almost all areas of my life. As a mum, not being good enough, not being pretty or witty enough and certainly not being fun enough. As a wife I experienced a similar theme with the first husband (not the amazing second one!), not good enough, pretty enough or sexy enough and all confirmed when he left me for a younger, prettier, sexier lady.

As a social worker this theme has also continued. I feel that I am not good enough, that I will be found out as being a fraud, an imposter. I know from my supervisions, appraisals and feedback from colleagues and service users that I am good at my job, so why don’t I believe it? I guess I would need to look further back to see where these feelings come from but for now I am able to recognise that this is something I do and am able to quietly challenge myself and my thoughts and feelings.

So I was shocked reading that article that I also relate this feeling of being an imposter to my cancer diagnosis! It’s taken me some days reflecting on this, to try to work out why I feel like this and I think it’s because I didn’t have to have Chemotherapy or radiotherapy - thank goodness!!

People have helped to reinforce that feeling of being a fraud, an imposter. ‘You got off lightly’, ‘It’s three years are you still thinking about it?’ and ‘At least you didn’t need chemo’, are some of the platitudes I have experienced. I am lucky, I know that. I did get off lightly because I didn’t need chemo but I have lost both my breasts. I have had a chemical induced and then surgically induced menopause and I am on hormone tablets for another 7 years with all the fun side effects that come with that. I still live with the fear that the cancer may come back.

And after the diagnosis, I haven’t run any marathons, or baked a huge number of cakes to raise money, the imposter inside of me is berating me telling me that I couldn’t even do the fundraising bit properly. My calmer more rational side is telling me that I have got on with doing what I do best…being a mum, a wife and a social worker.

I realised whilst writing this that this feeling of being an imposter is one of the reasons I don’t go to any physical support groups and rely heavily on the online support of the the BRiC Centre's group. I think I feel ashamed that I had cancer and didn’t need to go through some of the horrendous treatments that my online friends have had to experience. Just reading that sentence is astounding and so sad.

So I can continue to challenge myself and I can change the way I view things.  I can start to be proud of who I am, the good mum, the good wife and a competent professional.

I am Andria. I am a good mum, I am a good wife and I am a good social worker. I have had breast cancer.

I need to stop apologising for the areas that I think I am lacking in and embrace me just the way I am.

Weekly Discussion Summary ~ Support Groups and Organisations

Our Sunday discussion this week was all about groups, charities and organisations from which people have received valuable support. 

As it is Mental Health Awareness week, our centre's goal of helping women with a diagnosis of breast cancer to build their resilience sits nicely alongside cognitive capability and drawing on mental strength to increase well-being. A sense of belonging to a group or team, and the sharing of common yet unique experiences with others, is well known to contribute hugely to mental health.

It was gratifying to find that so many women had received such great support from their local hospitals and cancer centres, but also disconcerting to find considerable inconsistency across the UK. Some of the charities listed are local, some national. Some enterprising women have filled gaps by starting their own support groups and other initiatives, which may help to provide inspiration for others to do the same. This list is by no means exhaustive, but we hope that by putting our heads together and sharing these resources we may be of help to others seeking support. The best known support organisations such as Macmillan and Breast Cancer Care are of course available to all. 

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The organisations discussed can be found in the existing resource tab here in Panning for Gold: RESOURCES

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact us via Facebook https://www.facebook.com/resilienceinbreastcancer/

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Thanks to Sally for allowing us to use her beautiful photo.

Weekly Discussion Summary ~ Turning Down the Volume on Cancer

How do we not allow our cancer to dominate our thoughts or define us? How are we more than this diagnosis?

Naz introduced our weekly discussion by reminding us that we had found that cancer is not a chapter in our lives that we can put behind us, but we take it forward with us. We are hypervigilant for signs that our cancer is back or progressing. Our emotional and cognitive brains become out of balance, with our emotional brain dominating as it remains on high alert following our trauma. Naz’s research work looks at cognitive interventions which strengthen the seesaw relationship between the emotional and cognitive brains, exercising and challenging the cognitive brain in order to regulate the emotional brain. 

Many of our members have adopted the popular proven cognitive practices which help to restore the balance, namely mindfulness, CBT and support groups. Our discussion highlighted the value of sharing fears and anxieties with those who understand, and the compassion showed by members for each other's stories was particularly apparent this week.

As you might expect, time is a healer, and the longer a woman shows no evidence of disease following diagnosis, the lower the cancer volume may become. However, for many, fear is constant and upsetting. Many find keeping busy helps, and distract themselves with continuous activity. Poor sleep may find us being visited by cancer demons in the small hours, when anxiety finds a high decibel level. Humour is a great way to dispel fear, and many find spending time with friends and family, doing ordinary normal stuff, is the best way to forget about cancer once in a while.

For those undergoing treatment, the noise of cancer is deafening. Some women turn it down by numbing or intellectualising their feelings. Others are bravely immersing themselves in the high volume and may be feeling desolate, unwell and miserable. However we cope, we are not alone, and our group helps us all through these dark times.

Turning to face our fear through acceptance, and then taking control by concentrating on our own well-being, is helpful. We were reminded that the noise of cancer can be a positive in that it never lets us forget to listen to our bodies, and it makes sure we remember how precious life is. 

Our discussion, which included women with primary and secondary breast cancer, reminded us all that whatever happens, with support and the practice of resilience we can live our best lives, with the cancer noise sometimes gentle in the background and sometimes harsh and intrusive. The seesaw may be out of balance, but we are never alone on it. 

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

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Thank you Debbie for letting us use this beautiful image!