Weekly Discussion Summary ~ Chemo Brain

Summary of our weekly group discussion ~ 17^th December 2016

CHEMO-BRAIN' - WHAT IS IT AND HOW DOES IT IMPACT ON US?

Chemo-brain is a common term used to describe the thinking, attention and memory problems that occur during and following cancer treatments.

Though chemo-brain is a widely used term, it is somewhat misleading because even those of us who had not received chemotherapy reported a notable impairment in our thinking abilities. However, Naz told us it is widely recognised that the trauma of a breast cancer diagnosis plays a significant role and that hormonal treatments also contribute to a reduction in our cognitive abilities.

Although there were exceptions, the overwhelming majority of us described experiencing significant difficulties in relation to thinking and retaining information, particularly our short-term memory and working memory ie holding one task/piece of information in mind while completing another task. Sometimes our errors were small, and we could laugh off our lapses in memory, but at other times, we felt our thinking problems were much more significant, undermining both our confidence and our ability to function in our everyday lives, for instance at work, in social settings and our relationships with our friends and families.

Naz explained that it is clear that the brain networks involved in processing (cognitive) information efficiently are heavily impaired in women with a breast cancer diagnosis. Both the attached paper and our own experiences highlight that these difficulties continue to impact on us to a varying degree, sometimes over many years.

Naz told us that there is also solid evidence to show that brain grey and white matter is reduced as a result of a breast cancer diagnosis and chemotherapy treatment. The mechanisms in our brains which are involved in cognitive function have to work harder to achieve similar outcomes to those which individuals without a breast cancer diagnosis (matched controls) achieve with less effort which explains why some of us experienced mental as well as physical fatigue.

Psychological interventions focus on our depression and anxiety, yet our symptoms and experiences only served to highlight how little support and understanding is available to us. We need the medical world to take 'chemo-brain' and the consequences of it seriously as well as interventions which improve the brain’s attention and memory and in turn our overall psychological well-being.

http://www.curetoday.com/community/barbara-tako/2016/12/chemo-brain-it-doesnt-always-go-away

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Weekly Discussion Summary ~ Impact on Self Image

How does a breast cancer diagnosis impact on our body-image, self-esteem and sense of physical well-being?

The way in which we perceive our bodies has a significant impact on our personal and social well-being. As women, breasts constitute part of our femininity - the way we see ourselves and the way others see us, not only our partners, but the way we present ourselves socially and professionally.

There is good evidence to show that women diagnosed with breast cancer are less confident about their bodies and that our diagnosis and the impact of treatment carries significant implications for all aspects of our health.

We shared our varied experiences as a group - some of us had had a lumpectomy, others had had mastectomies, some of us had chosen not to have reconstruction, others had experienced complications, perhaps as a result of breast surgery, including failed reconstructions, recurrence and secondary breast cancer.

Our attitudes towards our breasts reflected our varied views about what our breasts meant to us as women, for instance, some of us were very comfortable with life after a mastectomy, and without reconstruction, whilst others described feeling a huge lack of confidence. It was clear that a loss of confidence about our body image undermined our sense of self-worth and 'other' worth in personal and social relationships.

Some women had been able to regain confidence as a result of reconstructive surgery, others had not. Some women had been able to regain their confidence as a result of supportive partners, whereas some partners had also found it difficult to cope with the changes in our bodies.

We all had in common an experience of a complete loss of our confidence in our bodies as a result of developing cancer and we shared our continued anxiety about whether we would remain well. The ongoing impact of challenging treatments on our bodies and health, including our sexual health, is often hidden from our loved ones - weight gain, pain, fatigue, hot flushes and vaginal dryness are just a few of the challenges some of us experience. All these symptoms have a significant impact on our overall health and well-being and for some, this was far more difficult to manage than the impact of breast surgery.

Naz told us that a lack of self-compassion and a tendency to depreciate ourselves is one of the biggest risk markers for depression. Isolation and being unable to share our concerns increases our vulnerability. We all shared how much we valued the support of the group and having a safe space to share our deepest fears and concerns.

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Weekly Discussion Summary ~ Learning to Live a Rich and Meaningful Life

In this week's discussion, we shared the varied ways we are learning to live rich and meaningful lives, despite our our physical ill-health and losses, including perhaps aspects of our identity, such as work, and despite the ongoing uncertainty of living with cancer and it's effects.

Our breast cancer diagnosis had led many of us to experience a greater appreciation for 'life' and for what it means to be alive, as well as a profound joy in the small - perhaps previously unnoticed - details that make up our day-to-day lives: acts of kindness, being outside in nature, spending time with loved ones, volunteering, learning or establishing new traditions for our children and grandchildren.

Some of us described how our outlook on life had completely changed, we might for instance have become calmer, more tolerant, kinder to ourselves and by re-evaluating what is important to us, have decided to take up new interests. Our awareness of our mortality, though painful and frightening, had led many of us to find within ourselves a freedom to be more authentic, perhaps giving up aspects of our previous lives which we realised were unfulfilling. Some of us had also decided to take more risks and embark on new adventures.

Viktor Frankl, a psychiatrist and holocaust survivor, said “Those who have a 'why' to live, can bear with almost any 'how.'” To find and have a purpose in life brings a much more powerful meaning to those of us living with breast cancer and its effects, because our experiences are that we have a life that we no longer take for granted. While some of us have faith and spirituality, we discovered that we don't need to be religious to search for meaning in life, instead, we all have within us a spirit that can reach far and high, in search, not for 'the truth', but 'our truths', that with courage, we can discover our inner selves and what makes each of us unique and resilient.

Frankl also says: “But there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer.” In his timeless classic, 'Man's Search for Meaning', Frankl shows us that the 'freedom' we have is not, as we might believe, in events that happen to us, or the way our bodies behave, but rather, in how we choose to respond. We discovered that whatever our physical limitations, we can still make choices about how we want to live day by day, and do what brings us pleasure and joy.

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Weekly Discussion Summary ~ How Do You Talk To Children About Breast Cancer?

In this week's discussion, we shared our experiences of talking about our breast cancer diagnoses with our children which highlighted a universal, instinctive and over-riding wish to shield our children from the fears and uncertainties that a cancer diagnosis inevitability brings into their lives.

How do we help our children cope? How do we find the words to explain a complex and frightening disease? How do we choose words so not to mislead? How do we give our children confidence at a time when we ourselves are likely to be dealing with overwhelming fears and the physical demands of treatment?

These are some of the questions our members, with children between infancy and adulthood, are grappling with. We touched on the demands of parenting while living with a life-changing illness, and our joy in being with, and caring for our children. Some of us had experienced multiple diagnoses or are living with secondary breast cancer, which meant that our children were exposed to further, or ongoing uncertainty.

Our views on what to tell children varied depending on the stage we ourselves were at, the age, needs and personality of our child, and our own views as a parent. Some of us favoured openness whereas others were more reticent about sharing worrying information. We also realised that just like us, children take their experience of cancer forward with them, and it's a subject they may come back to again as their understanding of the disease changes, or memories and new questions are triggered by media stories.

From a psychological perspective, Naz encouraged us to consider that the more our children can talk about their fears, the more resilient they become as we can support them to prepare themselves for their future.

We heard that talking, writing and confiding in a trusted adult are all tools which can give our children the strength they need to deal with the uncertainty they face. If we can talk about issues, in a simple and honest way, while believing in our own resilience, then we can strengthen our relationship with our children, whilst opening up avenues to make the situation easier for them.

We learned that there is no golden standard, or rules, to say what works and what doesn't – it’s all about managing, confronting, and accepting. While it certainly is not easy, we all wanted to help our children to express and manage their fears - whatever their age.

It was incredibly painful for us to accept the potential vulnerability that our cancer imposes on our children. However, we learned that our children are more resilient than we think they are, and although some of us described our diagnoses as having a profound impact on our children, we also heard how, with time, and support, it was possible for them to come through these dark times and thrive.

Attached is an article which paints a beautiful and moving picture of how a mother explains her depression to her toddler, offering a parallel to the complexities of talking about breast cancer; '5 top tips' from Macmillan, and a link for rethink, a service which aims to raise awareness of cancer in schools:

https://www.washingtonpost.com/news/parenting/wp/2015/10/08/mommys-boo-boo-explaining-depression-to-a-toddler/?postshare=2411444403951250&utm_term=.80197e21dce7

http://www.huffingtonpost.co.uk/laura-rentoul/tips-for-talking-to-children-about-cancer_b_10332142.html

http://rethinkcancer.com/

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Weekly Discussion Summary ~ Loss of a Friend or Loved One to Cancer

In this week's discussion we shared our feelings about the loss of a friend or loved one from cancer.

We all described feelings of intense sadness and how deeply we are affected by the loss of someone with cancer. For some of us there is numbness, which can shield us from our most painful emotions. Others described feelings of guilt, or worry for their own family and friends and some of us shared that they had needed to withdraw from groups and forums. We also acknowledged that our immediate reaction is often a combination of sadness, mixed with deep fear for ourselves. We realised that underlying our grief is the obvious - yet unspoken - fact that we are reminded of our own vulnerability, something that we carry with us, yet often suppress to keep going. This uncertainty, adds to our fear, which can then make us extremely apprehensive about the future.

More than loss though, was the importance of our friendships with one another, the way we enrich one another's lives through our shared experiences and our understanding of one another's feelings and fears. We all felt this was a positive we had taken from our experience of cancer. Our discussion concluded that while there is loss, we gain so much more from our friendships with one another and there is love, which outweighs the sadness, and which we carry forward with us.

In relation to our psychological resilience, the question we asked was what is the best course of action?

Naz told us about George Bonanno, a profound Research Professor of Psychology, who has written a book called 'The Other Side of Sadness'. In it, he outlines evidence from longitudinal studies showing that people who allow themselves to grieve and express emotions associated with the trauma have better psychological and physical health in the longer run.

As our discussion highlighted, there is no right or wrong way to experience fear, sadness, and grieving for our loved ones, but if we allow ourselves to get closer to our emotions, our 'hurt', then this evidently has beneficial effects on a number of levels. This is the opposite of denial, and of course needs much flexibility and strength to know how to down regulate our emotions when we feel ready to move forward. Grieving, and acknowledging our fears can only give us the strength to move forward.

For interest, here are two blogs on the bonds of friendship between those living with cancer and its effects. One by our very own Tamsin, the other by Kira Goldenberg:

http://www.huffingtonpost.co.uk/tamsin-sargeant/the-living-infinite-frien_b_11996066.html

https://www.theguardian.com/commentisfree/2016/jun/23/cancer-survivors-bond-grief

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Weekly Discussion Summary ~ The Impact of Breast Cancer on Partners

Our weekly discussion explored the impact of our cancer diagnosis on our partners, with a focus on our relationships, including the support, or lack of it in some instances, that was received from partners during diagnosis, treatment and beyond.

The experiences of our members were diverse, with some relationships breaking up because the partner was unable to cope, and others becoming stronger and closer following the illness. Some experienced their partners shying away from engaging with the treatment, others' partners attended every appointment and became carers. Some of us felt guilty that partners had to take over practical tasks such as housework or childcare, and expressed their worries for their partner, and that their illness might make them a burden.

The article Spouse Support Doc outlines the important role supportive partners play in helping their partners with breast cancer. More than this, irrespective of whether partners ARE or AREN'T supportive, they also need support and psychological care in their own right. Not only would this help partners to address their own needs, but would also help us, because we could be more open about our feelings, and this in turn fosters healthier relationships.

Those partners who did have support did a better job at supporting their partners with breast cancer, and this lowered psychological distress as well as depression for both of them. It was a challenge to consider how our cancer experience has affected our partners' emotional wellbeing, because our own needs can feel so overwhelming, however, the research concludes that partners deal better with the breast cancer diagnosis if they receive some kind of psychological assistance, even if it's just a friend or family member to talk to.

The husband of one of our members has written a book about his experience: you can read it here: https://www.amazon.co.uk/Coping-Your-Partners-Cancer-Husbands-ebook/dp/B01LXU5WI6

Profits will be going to charity.

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Weekly Discussion Summary ~ Cancer and Anti-Depressant Use

This week's discussion was triggered by this article posted by one of our members highlighting that the use of anti-depressants amongst those diagnosed with cancer is double that of the general population (1 in 5 compared to 1 in 10).

Some of us shared that we'd found anti-depressants a great help, others were adamant that we don't wish to use them, although even those who have abstained so far were clear they would consider them. Experiences of taking anti-depressants varied, from providing clarity at one end of the spectrum, to masking reality and numbness at the other. The difficulty of coming off medication due to withdrawal side effects was also highlighted.

What is clear from our members' contributions is the immense psychological challenges that accompany a cancer diagnosis. Many of us have sought help for low mood and anxiety, others have experienced fatigue and long term pain, many had been given anti-depressants - sometimes because they felt that there was little alternative. The end of treatments like chemotherapy/radiotherapy/surgery was identified as a vulnerable time, accompanied by and a sense of feeling lost and being cast adrift. We also wondered about the psychological needs of those living with secondary breast cancer.

Though we would never want to take away any strategies for coping, we think it is important to highlight the contradictions, and controversies in relation to anti-depressants, including the lack of understanding about the mechanisms by which they 'work'.

While we need to cope as effectively as we can, and we need to survive, Naz told us that the longitudinal 'effects' (or lack of) in these drugs are problematic - we expect the brain to take over after a course of antidepressants, but what happens? Many people need to go back on them again. We also don't know how they affect cognitive function.

We all feel that more holistic and longer term support is required to help us with the breadth and depth of the psychological adjustments required and identified the importance of our group as a safe place to share our feelings.

http://www.everydayhealth.com/cancer/living-with/high-rate-antidepressant-use-after-cancer/

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