Friday 23 December 2016

Being Ill At Christmas ~ Tamsin ~ HuffPost Blog

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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:

Weekly Discussion Summary ~ Finding Happiness

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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.


Saturday 17 December 2016

Weekly Discussion Summary ~ Chemo Brain

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Summary of our weekly group discussion ~ 17th December 2016


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.


Friday 9 December 2016

Weekly Discussion Summary ~ Impact on Self Image

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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.