Weekly Discussion Summary ~ Coping with Caring

As a group, our caring responsibilities were diverse, reflecting our individual circumstances, for instance, some of us were caring for elderly parents, others had dependent children (both young and adult) with additional needs, or partners with their own significant and long-term health needs.

It was clear that the implications of 'caring' go way beyond looking after a loved one who is ill. The most challenging circumstances appeared to be when a family member experienced their own struggles, including their physical and mental health, and are very dependent upon us. For some of us, especially those with secondary breast cancer, and those of us managing ongoing health difficulties, adopting a position of acceptance, seemed the only - and best - way forward. Acceptance is relative though, as we have a varying ability to influence the way we can shape our near and distant futures.

Naz emphasised that when we are confronted with the role of caring for a significant other, it is inevitable that we need more emotional and physical support, because we implicitly tend to put our needs second, and focus our energy on our loved one. The accumulative effect on us of meeting these needs can be draining, even if we are caring for people we care deeply about, and increases our vulnerability.

Naz also explained that there is research to show that vulnerable carers are at most risk of developing clinical conditions, even though they may find it rewarding to look after their loved ones. Even more challenging is how this relationship sits with the outside world, especially at times of celebrations, including Christmas, when we are encouraged, as one of our members put it so eloquently, to 'see the world through rose tinted glasses' and yet our reality may feel very different.

As carers, our balance shifts and we can end up undermining any new hopes and initiatives in favour of our altruistic passion to care for those dependent on us, a problem that is exaggerated if the person we care for is in our immediate family.

It was apparent from the huge responsibilities described by our members that carers need more recognition and support. We heard stories of love, strength and resourcefulness from women supporting and caring for others, while quietly and privately dealing with their own struggles. As carers, we are in need of more attention, comfort and resilience and while in reality this can feel immensely difficult, we shared that creating even small spaces to nurture ourselves as well as being able to share our feelings with others was incredibly helpful.

#ResilienceDiscussion

Many thanks to Diane for allowing us to use this wonderful photograph

My Past, Please Welcome My Future ~ Naz ~ HuffPost Blog

The latest blog by Naz, Director of The Centre for Building Psychological Resilience in Breast Cancer, published on HuffPost UK The Blog.


"To be able to remember the past is one of the most amazing functions of the brain. Without it, we would not be able to learn, to plan, to reflect, to correct and to grow. Thinking of pleasant memories gives us warmth and encouragement for the future. But what about the memories that are upsetting and painful? Should we try and forget them to protect ourselves from the pain and trauma? Can they hold us back from moving towards a better future?"


Find out here:
http://www.huffingtonpost.co.uk/nazanin-derakhshan/my-past-please-welcome-my_b_13928102.html

Weekly Discussion Summary ~ Hopes for the New Year

The beginning of a new year is a time for reflection, and as women living with a diagnosis of breast cancer, thinking about the year ahead can remind us of our vulnerability, though our fears may be unspoken and we also find ourselves wondering what we can aspire to, our dreams, our hopes and what we want to achieve in the coming year.

For some of us, the future is anxiety-provoking and when we try to be hopeful and think of all the amazing things that could happen, the picture before us becomes blurred and we find ourselves wondering whether we dare to dream. For those of us living with secondary breast cancer, the over-riding hope is for stability in our health, for treatments which continue to keep disease in check, and a sense that the here-and-now is what matters most to us. Some of us shared our dreams to make career-changes, travel, celebrate significant milestones, support our loved ones, take up new interests and give something back to our communities.

For women living beyond the most active phases of treatment (surgery/chemotherapy/radiotherapy), there can be a huge impetus to treat cancer as an event we can put behind us. Naz told us that the past prepares us for the future and gives us the solid foundation in which we can build resilience, a spring board to fly from. To forget the past is to break that foundation, but if we can use it to our advantage, we can make the future an achievement.

Our debate highlighted our rich and varied hopes and reflected our individual interests and aspirations, but what we had in common was our wish to live our lives meaningfully, according to our values, and yes, for some of us our steps forward are faltering and uncertain, but forwards we must go, with curiosity, with love and with hope.

#ResilienceDiscussion

Many thanks to Sally for allowing us to use this photograph.

Being Ill At Christmas ~ Tamsin ~ HuffPost Blog

Our deputy head, Tamsin's latest blog for HuffPost The Blog.  


"I missed my work Christmas party last week. It seems unlikely that I’ll be sending many Christmas cards, given that I have none, and as for presents, there might not be any this year. I’m not the Grinch, I love Christmas and I’m the person least likely to say “Bah! Humbug.”

I’m ill.

The question you want to ask now is, ‘What’s wrong?’"


Find out here: http://www.huffingtonpost.co.uk/tamsin-sargeant/being-ill-at-christmas_b_13630440.html

Weekly Discussion Summary ~ Finding Happiness

We shared the many ways we had learned to find joy and laughter in the small things that make up our daily lives. For many of us this included spending less energy on work and making space in our busy lives to relax and do what is truly important to us, including music, art, dancing, travelling, walking and writing. Many of us valued nature and being outside and described noticing the beauty that surrounds us, the birds singing, gazing at the moon and stars, the sight of a robin on a window ledge. What stood out most from the discussion was the value we place on 'experience', on 'making memories' over 'material things' and the importance of our relationships.

Families, partners, friends, children, grandchildren, pets - it emerged that it is these relationships which are at the heart of our identities and the core of how we experience happiness. We shared the importance of being with those we hold dear, with a profound appreciation for our loved ones as a result of what we've discovered, although if we experience love more deeply, we also experience grief for those we miss, perhaps more acutely too.

We challenge the notion that cancer is a 'gift' because of the intense suffering and distress it causes, especially for those living with secondary breast cancer and long term side effects of treatment. However, we do believe that it is through our extraordinary resilience and strength as human beings that we take from, and learn from the trauma that we experience as a result of our diagnosis. It is this which we can take forward to develop a greater appreciation for life. The gratitude which we feel, Naz explained, is an after effect of trauma that we are inevitably left with, and through practice we can sustain this gratitude, otherwise, like the many sweet things in life, it can disappear.

Some of us described how we had lost the ability to laugh as a result of our diagnosis and treatment, whereas others had found humour, including a 'dark' humour at some of the indignities that we experience, to be a vital means of coping and experiencing happiness.

Naz told us that evidence shows that gratitude and grit come from flexibility and sensitivity, from pain and the will to survive, not from 'toughness' and being 'hard' but the will to sustain along this path we call life and the will to embrace our vulnerability with tears.

Many thanks to the wonderful Sally for allowing us to use her stunning photograph of a winter sunrise.

#ResilienceDiscussion

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

#ResilienceDiscussion

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.

#ResilienceDiscussion