Wednesday, 29 March 2017

Weekly Discussion Summary ~ Balancing Positive and Negative Emotions

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Summary of our weekly group discussion ~ 29th March 2017
This week our discussion explored how we balance 'positive' and negative emotions.
"Think positive” is a phrase we often hear when we are diagnosed with breast cancer. Sometimes we say it to ourselves, sometimes others say it to us as a way of encouraging us. But what does it really mean to 'think positive'? How does it benefit us and are there drawbacks of a 'positive' mental attitude?'
As a group, we shared that adopting a positive outlook had helped us to manage the intense emotions that are in the driving seat when we find out we have primary or secondary breast cancer. Our initial reactions include shock and disbelief; we often have to deal with the practicalities of treatment decisions and schedules, reinforcing our natural tendency to adopt an avoidant style of coping. Many of us described being naturally drawn to avoiding our negative feelings, wishing to appear positive in our interactions with the world at large, and in some circumstances we thought this was helpful. However, draw backs to this attitude include becoming cut-off from our emotions, numb, or unable to share our authentic feelings, leading us to feel isolated.
Some of us shared that we could express positive and negative emotions, and felt this was liberating. Others described consciously or unconsciously finding themselves being drawn to the 'silver linings' - the positives that had come about as a result of our changed circumstances, such as spending time with our children while being on sick leave.
Naz told us about research on cognitive flexibility, its promising influence on mental well-being and encouraging effect on building resilience. The elasticity and plasticity by which we embrace our diverse range of emotional experiences helps us regulate our emotions appropriately and appreciate our experiences, however complex they may seem.
This lyric from the song Elastic Heart, by Sia, helps explain these ideas:
“Well, I've got thick skin and an elastic heart, But your blade—it might be too sharp, I'm like a rubber band until you pull too hard, Yeah, I may snap and I move fast, But you won't see me fall apart, cause I've got an elastic heart”.
In terms of our feelings, this means feeling sad, grieving when we need to and being fearful when it’s necessary. A flexible style of thinking, like the rubber band, is elastic. Naz explained that brain plasticity is not a simple thing to achieve, especially when we have gone through highly traumatic experiences, ones that continue to haunt us. Breast cancer brings with it uncertainty and the danger of recurrence, the progression of disease, loom high. In these circumstances, our brains are geared towards anxiety related thinking styles, appropriately even, hypervigilant for signs of danger, feeding into anxiety and worry. However, this increases our vulnerability.
Naz explained that research shows that our ability to embrace negative thoughts and painful experiences paves our way to allow the positives we experience to nurture us. This is especially relevant to those of us living with breast cancer and its effects because we take our cancer forward with us. Our moments of ‘being down’ can help us to understand ourselves and embracing our inner fears helps us to practice gratitude, and grit. The balance is hard to achieve, but it can be done with practice.
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.


Sunday, 26 March 2017

Weekly Discussion Summary ~ Survivorship

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Summary of our weekly group discussion ~ 26th March 2017


What does it mean to survive breast cancer and be a 'breast cancer survivor'? Does the term 'survivorship' offer an accurate description for our many and varied experiences?

These were some of the questions we asked ourselves in our weekly discussion ~ 'What does it mean to be a breast cancer survivor?'

We started by considering definitions offered by the Cambridge Dictionary: 
1. A person who continues to live, despite nearly dying. 
2. A person who is able to continue living their life successfully despite experiencing difficulties.

Theoretically, the notion of survivor makes complete sense, for example as a way of thinking about those who 'survive' a war, an accident, or abuse. However, our discussion, which involved women with primary and secondary breast cancer as well as women who have had a recurrence, considered the limitations of being seen as a 'breast cancer survivor'.

Firstly, cancer is not a one-off 'event' that we can put behind us. Our experiences are complex - very few of us are told we are cured; we need to continue to be vigilant for signs of recurrence and uncertainty remains ongoing. As a result, rather than putting cancer behind us, we take it forward with us, and in this respect our experience is different from other situations.

What about those of us whose cancer comes back? Are we then no longer 'survivors?' Unsurprisingly, those of us with secondary breast cancer could not relate to the term and it was clear that it is particularly insensitive as they are not going to 'survive' breast cancer. Yet, these are women who adapt and continue to live with grit and resilience.

Some of us saw the term as an unwanted label, unhelpful and something of a cliché. Most of us rejected the assumptions that come with the term 'survivor' such as - 'you must be strong!'; 'you must be positive!';'you must jump out of a plane to raise money' etc etc as well as unrealistically high expectations.

There was not a universal rejection of the term 'survivor' though. Some of us felt it was a good fit for describing our psychological journey. Although most of us rejected words like 'battle' and 'fight', we also felt that there were limitations with seeing our experience soley through the lens of treatment and we needed something to describe the experience.

To summarise, we found the meaning of survivor in ‘Planet Cancer' to be ambiguous. We would all like to think that we continue to survive breast cancer to the best our capabilities. The way we do so is unique and what we really need is to be allowed to speak with our own authentic voices about the psychological impact of cancer on us.

Naz told us that the word 'survivor' and the concept of 'survivorship' is everywhere in the breast cancer literature. While some of us see ourselves as survivors, the insensitivity to the implications of using it widely is both upsetting and inaccurate. We need new words and ways of describing and thinking about the complex experience of cancer.

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


A big thank you to wonderful Bal for allowing us to use this beautiful picture.

Saturday, 25 March 2017

An Open Letter to Any Woman Recently Diagnosed With Breast Cancer ~ HuffPost Blog

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What do you say to someone recently diagnosed with breast cancer?

We are delighted to share this Huffpost blog ~ 'An Open Letter to Any Woman Recently Diagnosed With Breast Cancer', written by Tamsin, with Anita's vital input, and based on one of our weekly discussions.

'Plenty of people will tell you that you’re ‘strong’ and ‘brave,’ that ‘you have to get on and kick cancer’s butt’. But underneath all this fighting talk, you might be just plain scared. We want you to know that we didn’t feel brave. We felt there was never any choice but to go on.'

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private member's group, please contact us by messaging via our public page:

Saturday, 18 March 2017

Weekly Discussion Summary ~ What to Tell a Friend Who Has Been Diagnosed with Breast Cancer

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Summary of our weekly group discussion ~ 18th March 2017


With around 1 in 8 women being diagnosed with breast cancer in their lifetime in the UK, at some point we will find ourselves in a position where we hear about a close friend or acquaintance who has just been diagnosed with breast cancer. But, what should we say? How should we respond?

We instinctively want to reach out and help our friend, we find ourselves thinking back on our own experiences and we wonder what it is that might have helped us, what we might have wanted to know. For instance, would it have helped to know about the effects of surgery and the possible complications? What might have helped us to cope with chemotherapy, or radiotherapy? What would have helped us practically and emotionally so that we might have been better equipped to deal with the challenges that lay ahead?

We all felt that our shared and common experience provided us with a unique perspective from which we could offer generic and helpful advice to bring comfort and support to those affected, like us. Our discussion, which included the experiences of women with primary and secondary breast cancer reflected both the practical and the emotional, beginning with our recognition that our ability to take in advice, support and information changes - in those first days, we just wish for someone who can sit next to us, and give us space talk, to cry, to be scared, horrified and hopeful all at once. Then, once we have a treatment plan, we might find that we begin to galvanize and prepare ourselves for the demands of treatment.

We have found impossible to convey the extraordinary richness and depth of our discussion in a summary. As a result, we plan to try and capture the nuance and detail in the form of a longer blog post which encompasses both the emotional, and the practical, the insights, and our changing needs. Watch this space!

If you have been diagnosed with breast cancer and would like to join our private group please send us a message on our public page:


Monday, 13 March 2017

Lymphoedema Awareness Week ~ Francoise

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Read Francoise's fascinating account of the impact of pioneering super-micro-surgery for lymphoedema in this post which she wrote especially for our #ResilienceinLymphoedema series:

I was diagnosed with breast cancer in September 2013.

I finished treatment (Chemotherapy, Mastectomy and lymph node clearance, and then 5 ½ weeks of radiotherapy in May 2014).
In February 2016, my arm got painful and I realised it was getting bigger. My doctor referred me straight away to the lymphoedema clinic. However, there was over 3 months to wait before the first available appointment and my arm was very sore so I saw a MLD (manual lymphatic drainage) practitioner who relieved the symptoms. (I had to go once a week and it cost £40.00 so it was not sustainable in the long run.) She gave me a compression sleeve and I could see how I could manage the lymphoedema in the future. It definitely was do-able but I hated the sleeve, not just because it is so ugly or uncomfortable but because it reminded me constantly that I had had cancer and that it might come back. Also I was in constant discomfort – not terrible pains but permanent.

I had heard about a new type of surgery - “super-micro-surgery”. The surgeons describe it thus: “Through tiny incisions, often less than 2cm (1 inch) in length, we find lymphatic channels and small veins just beneath the skin. We then connect the lymphatic channels to the veins, using sutures that are less than a fifth the width of a human hair. This gives the lymphatic fluid an alternative route to escape from the affected area, effectively bypassing the area of damage to the lymphatics.”

The clinic is in Oxford and I live nearby so I thought I should at least consider it. I went to a consultation and found out I would be suitable for surgery. There was the small (not) question of money as this procedure is not available on the NHS in England but my husband and children (they are adults) were very supportive and we decided I should have a go.

We found the money (£15,000) and I had surgery in April 2016, before my first appointment at the lymphoedema clinic.

The surgery took 2 surgeons 5 hours: one hour for mapping my lymph vessels and veins (fluorescent green dye injected in my arm). Very high tech stuff but still they used red markers to know where to cut… I did not know veins and lymph vessels follow slightly different patterns in different people. Then two hours on the inside of my arm, one surgeon on the wrist another one at the elbow and two hours on the outside. I ended up with 4 small incisions with 4 connections in each. I was awake throughout, listening to podcasts on my phone. It was quite interesting. Two weeks off work then back to wearing my sleeve for 6 months. Straight away, the pain in my arm disappeared.

A year on I am still pain free. I only wear my sleeve when I go running or to my Zumba class. Very happy I had surgery. #ResilienceinLymphoedema

Saturday, 11 March 2017

Lymphoedema Awareness Week ~ Kathy Bates

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Did you know that Kathy Bates has lymphoedema?

The American actress, perhaps most famous for her roles in the films Misery and Fried Green Tomatoes, has worked tirelessly to promote awareness of this little-understood condition which desperately needs more research and better management options.

Do take a minute to read her candid account about her own experience of lymphoedema as a result of having bilateral mastectomies.

Another amazing example of #ResilienceinLymphoedema

Lymphoedema Awareness Week ~ Karen

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#ResilienceinLymphoedema ~ Karen's story:

My name is Karen and I’m a determined, resilient and downright stubborn woman!! I feel it’s appropriate to start this post by stating my position on life, the universe and everything, which is that I won’t be told what I can/can’t/should/shouldn’t do. Sometimes this serves me well and other times not, but I’ve been like it my whole life and I’m not about to change anytime soon. 

I was diagnosed with grade 3 HER2+ invasive ductal carcinoma in May 2015 – I went 6 rounds with the dreaded FEC-T chemo during the summer of that year, had a right mastectomy and axillary node clearance in November, 15 doses of radiotherapy in January 2016 and finished active treatment in August 2016 after 18 doses of Herceptin.

I noticed that my right arm had swelled up pretty much straight away after surgery, however I assumed that this would ease, along with the swelling across my chest, as I started to heal. Although the swelling did reduce, my right arm remained bigger than my left but this didn’t really bother me until my arm started to ache a lot and feel very uncomfortable about a year after surgery.

I was referred to the local Lymphoedema clinic who, so far, have only offered me a compression sleeve - in a very becoming (not!) shade of beige. I’d like to explore other options, like massage, but they’ve asked me not to until I have a review of the success, or not, of the sleeve.

I’ve been told all the things I “should” and “shouldn’t” do and I have made some adjustments – I now have a handbag with a long strap that I can wear across my body, spreading the weight, and I offer my other arm for blood pressure/blood tests. In the main though, I carry on with the same level of activity as I did before – gardening, carrying shopping, etc – because I’m determined that this is not going to stop me being me.

In the same vein, I didn’t let my cancer treatment stop me either. I continued to work all the way through chemo – I only had 3 days off due to a chest infection after dose 5, I returned to work 3 weeks after my mastectomy and I managed to work around my radiotherapy sessions. I’m fortunate to be doing a part-time (24 hours a week) job that I love (most of the time!) and I needed the focus of work to help me to feel ‘normal’.

I also have a 9-year old son, who brings me so much joy, and for whom I feel a need to maintain a high degree of 'normal'. He is another wonderful example of my resilience and determination, bouncing back after repeated miscarriages to eventually carry (almost) full-term and become a mum at the grand old age of 45. 

The sleeve bothers me because it is a ‘badge’ I don’t want to wear. For the same reason, when my hair fell out during chemo I wore a wig rather than a scarf. I don’t want to be defined by this – I don’t want to have to keep explaining to people I meet who ask me what I’ve done to my arm! So far it’s been easy to conceal as it’s been autumn/winter – how will I feel as the weather gets warmer I wonder? How will I cope on my summer holiday this year? I’ve seen some amazing coloured and patterned sleeves on the internet – am I brave enough to wear something like that?

I was bemoaning the whole sleeve business at the school gates recently and one of my friends said maybe we were missing a business opportunity here and that we should look into customising sleeves for lymphoedema ladies – so watch this space… “Pimp My Sleeve” could be coming soon to a high street near you…..!