Weekly Discussion Summary ~ Supporting Women with Secondary Breast Cancer

The topic of this week's discussion was ~ 'How can we support someone with secondary breast cancer?'

Not everyone knows that secondary breast cancer occurs when breast cancer spreads to other parts of the body. Also described as ‘stage 4 breast cancer’, or ‘metastatic breast cancer’, secondary breast cancer is incurable and treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible.

Our discussion included women with secondary and primary breast cancer as well as women who have had a recurrence. Women with secondary breast cancer spoke openly about their feelings, including their intense grief on finding out that breast cancer had returned, their challenges, and the different ways they were living rich and meaningful lives with resilience and fortitude.

While women with primary breast cancer fear recurrence, the fears of women with secondary breast cancer relate to progression of their disease, the availability of treatment options and concern for loved ones, especially their children. We heard about the losses that can accompany a secondary diagnosis, for instance, work, independence; that some women feel freed from having to do things they had hated; that some do amazing things and 'live it up'. Everyone, when they feel well enough, described wanting to really make the most of every moment by doing the things that matter most, including travelling and spending time with family and friends.

In terms of support, a number of key things stood out that really make a difference:

• To be supported to get on to lead our lives, as 'normally' as possible.
• To be treated 'normally', to be able to share our highs and lows, to be able to do both fun and ordinary things.
• Practical help can make an enormous difference.
• Knowing we are loved and cared for.
• To be able to have honest conversations with our loved ones about the future, and for our friends and family to be comfortable talking about cancer (we know this is hard - the support for our partners and families is almost non-existent).
• Hardest of all is when those around us seem to want others to pretend it's not happening and, worst of all, are platitudes, saying something like 'you can beat this!' or 'don't worry, we could get hit by a bus tomorrow' just isn't helpful.
• Increased awareness and understanding of secondary breast cancer.

It was shocking to hear about the lack of support offered to women with secondary breast cancer, and, often without access to a designated Breast Care Nurse, having to chase scans and co-ordinate aspects of their care. Opportunities for emotional and psychological support and wellbeing were generally limited, though there were some exceptions, for instance some women described being supported by hospices.

Some, but not all, had campaigned for the needs of women with secondary breast cancer to be understood better, and for many of us, lobbying government is a way to bring about change. It was clear from the experiences shared that secondary breast cancer can occur soon after - and even at the time of - initial diagnosis, as well as many years later.

We are proud that in our group women with secondary and primary breast cancer can stand together in our quest for resilience. Each group has its own fears, and naturally neither group wants to upset the other, but by talking and listening to one another, we can support each other, whatever stage we are at.

If you are a woman with a breast cancer diagnosis and you would like to join our private group, leave your name in the comments so we can get in touch.

Around 35,000 women are thought to be living with secondary breast cancer in the UK. For further information: http://breastcancernow.org/about-breast-cancer/secondary-breast-cancer/what-is-secondary-breast-cancer/how-common-is-secondary-breast-cancer

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.

#ResilienceDiscussion

Thank you Jenny for letting us use your fabulous photo!

Balancing Positive and Negative Emotions

“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” (Sia, Elastic Heart)

"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?'

In our network, 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 are often forced to make treatment decisions​ and manage schedules, adopting 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.

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.

Weekly Discussion Summary ~ Survivorship

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.

#ResilienceDiscussion

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

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

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.'

Read the full blog here:
http://www.huffingtonpost.co.uk/tamsin-sargeant/an-open-letter-to-any-wom_b_15544112.html

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: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

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

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: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

#ResilienceDiscussion

Lymphoedema Awareness Week ~ Francoise

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

Lymphoedema Awareness Week ~ Kathy Bates

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

http://www.weizmann-usa.org/media/2015/06/24/kathy-bates-my-battle-with-lymphedema