Friday 26 March 2021

"What we resist, persists"; BRiC on how we embrace our mixed emotions after loss

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A recent Sunday topic for discussion focused on acknowledging the many mixed emotions we are feeling right now; for the losses we’ve experienced, coming to terms with how we feel, and being mindful of the pain we may be going through. This topic was very sensitively suggested by Naz after a hugely emotionally challenging week in which we all felt shocked and sad at the death of our wonderful administrator and friend, Bex Lewis.

Commonly expressed was the vulnerability that we all feel following Bex's death and how the impact of that is far-reaching. It triggers so much sadness and grief within us, as we mourn for the many precious lives that have been cut short. It’s only a matter of weeks since Fiona, another hugely valued and much-loved member of our administrative team died. We experience feelings of fear, disbelief, and sometimes despair as we reflect on what the future holds for each of us. None of us are immune to the possibility of secondary spread of breast cancer and for those of us currently living with the advanced version of this disease, the anxiety, and uncertainty about what lies around the corner is amplified.

We are each forced to face our own mortality every time we receive the devastating news that a member of our group has died but it’s reassuring to know that we are not alone in feeling emotionally vulnerable and fragile. Naz’s academic expertise and professional knowledge around how our brains respond to trauma helps to guide us. She is able to gently articulate the reminder, that as humans, our brains are hardwired to feel fear. This is part of our protective mechanism as we scour our internal and external landscape for danger as “a threat to our own survival has been flagged yet again.” Along with that comes the supportive message to us all, that “it’s ok not to feel ok.”

Each of us can behave harshly towards ourselves as we tell ourselves that we should be able to cope or better manage our feelings and emotions. Several of our members commented on how exhausted it makes us feel, as we try to muddle through the emotions in our minds. We acknowledged that talking to ourselves in a way that sees us trying to fight or resist our difficult emotions isn’t helpful. Instead, many of us are gradually accepting and understanding that if we embrace how we are feeling, this is much more nurturing and supportive of our wellbeing in the long run.

As individuals, several of us were able to open up and reflect on recent tragic circumstances and losses within our own families, friendship groups, and local communities. We are all one family here in BRIC but of course, we know we’re all part of wider families, friendships, and communities. There are many of us who have been recently trying to cope with feelings of sadness and grief in connection with experiences of loss closer to home.

The word ‘rollercoaster’ was used several times to describe the peaks and troughs of our emotional responses. Some of us are looking to a future that we know won’t include us and that burden weighs heavy as we present our ‘brave face’ to the world. The highs and lows of our emotions often manifest themselves in us becoming angry and frustrated at seemingly small things but our discussion highlighted a more accurate picture; that it’s not really the small things that are triggering us, it’s the layers that we’ve piled over the big things in our lives that see our emotional response bursting to be freed and acknowledged. This is upsetting for us as we reflected, that often, we don’t feel in control of our emotions however our discussion helped to shine a salient spotlight on this: we don’t have to put pressure on ourselves to be in control of our emotions; this is an impossible task. Blocking tears and burying things inside of us only serves to help our emotionally challenged internal landscape to become more overloaded.

There is an expression in mindfulness which is, what we resist, persists. This is a gentle reminder that facing all of our emotions head-on with kindliness and self-compassion is much more helpful in bolstering the vulnerability of our human experience as we encounter both pleasant and unpleasant feelings, thoughts and emotions. To accept only the pleasant aspects of our experience is to acknowledge only one-half of each of us.

The opportunity to talk, connect, and be part of our collective voice is life-enhancing and life-affirming. Hearing the message that all of our feelings are valid, that it’s ok not to be ok and that BRIC is a safe place where we can receive and accept support is very much felt and hugely appreciated.

“If we are physically hurt, loving our wounds, and nurturing them with TLC, makes them heal faster, ignoring them doesn’t.”

The life lessons, insights, and sharing that our Sunday night discussion provides help us to embrace all aspects of ourselves. We are held together by our experience of breast cancer and we are all heard. Sharing and communicating with one another helps us to feel supported, uplifted, and less afraid. We are helping one another to face all of our emotions.

Wednesday 17 March 2021

Quality of treatment and early diagnosis: "A geographical lottery for some"? BRiC's Collective Voice

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Quality of treatment and early diagnosis: "A geographical lottery for some"?

A recent BRiC Sunday topic discussed early detection of cancer and if we feel that our treatment has not been all we would have wished for, for whatever reason, how do we come to terms with that?

Our women, with primary or secondary diagnoses, felt this a most pertinent subject to discuss and the variation in our experiences was vast. Quite quickly, it became clear that not just a small but large proportion of our women had concerns about the lack of tools in early diagnosis, and their implementation in picking up signs of primary breast cancer and metastasis in secondary breast cancer.

Amongst our biggest concerns were failures in initial diagnosis (inconclusive tests not followed up) and considerable delays in getting diagnosed. For the former, some of the initial tests were unable to confirm a diagnosis and were not always followed up with a biopsy to produce conclusive results. Some expressed their fears around missing lumps on mammograms. Some expressed their disappointment of being ignored for tests when later they were diagnosed with lobular cancer, which is hard to diagnose in the absence of a lump. These all were believed to lead to the danger of letting tumours grow and metastasise. Given that breast cancer can express itself in all kinds of forms, it is worrying to hear so many accounts of late diagnosis.

Equally, a common issue experienced by many was the long interval between seeing our GP and getting tests for breast cancer. Some of our members believe they were ‘ignored’, that their ‘red flags’ were not seen, that their concerns were attributed to benign factors like age, muscle tenderness (or injury), fatigue and overdoing it at work. When in fact, they had breast cancer and it was undetected. For some an experience of a red rash was responded with ‘there’s nothing to worry about’. This coupled with the delay in administering tests led to a primary turning into a secondary diagnosis.

Some of us had experienced considerable delays from when we found a lump (for example in 2011, but not diagnosed until 2014). Similarly, we had a member say, “they could have done without the nearly a year of going back and forth to the breast unit and being told it was only a 'cyst’.”

We expressed our disappointment at why we had to resort to complaining to PALS to get heard for speeding up our treatment procedure or reporting our upset with our medical team. A member voiced their concern about a macmillan nurse who was not only unhelpful but said, “ I’ve never known or helped anyone as young as you with a diagnosis like this and I don’t know what to advise”. In a situation where fear dominates, the psychological ramifications of such responses can only run high.

We understand and acknowledge that breast cancer is a malicious and deceptive disease. Therefore, early scrutiny of signs is key to diagnosis and saving lives. Irrespective of what we experience, we put our trust in our medical team whom we believe will do the best for us. Breast cancer is also not an older woman’s disease, it can happen to anyone at any age. For younger women we believe there needs to be better education and vigilance on part of the medical team, for example discharge from the breast can be a sign of breast cancer but for a mum who’s just finished breast feeding this can be a benign symptom.

One member said it felt like a ‘geographical lottery for some’. There were many of us who believed that we’d had the best treatment possible, and that we were so grateful to our medical team for it. We had good accounts of attentive surgeons, oncologists and breast cancer nurses who looked out for us, who held our hands and who comforted us. Having said this, a large proportion did not have this experience. Those of us with better treatment regimens felt angry that we had to consider ourselves lucky to have had a smoother journey through treatment.

If you are a woman with a breast cancer diagnosis and would like to join our private support network please message us here and we will get back to you.

Friday 5 March 2021

Hope and what it means to us to be hopeful: BRiC's Collective Voice

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“Hope gives us the gift of enjoying life”

A recent Sunday discussion centred around hope and what it meant to us. Hope was felt to be an essential part of life. Without hope, there is despair. One of our members shared the beautiful quote above, written by her father - “Hope gives us the gift of enjoying life”. Hope helps us find the way out of darkness.

Naz introduced the topic by telling us that hope is linked to resilience - hope allowed us to bounce back from difficult times. When we are faced with the diagnosis of cancer, our hope is shattered, especially for those of us told we have secondary breast cancer where cure is no longer possible. Facing such shattering news sometimes made us feel that it was hard to be hopeful. One member described the sensation of needing to “dig deep” to be able to be hopeful for the future. Many of our members told us that it was difficult to hope for long term goals or were worried that by doing so, they would be faced with disappointment. It was almost universal that it was easier to feel hopeful about short term expectations and by living in the moment. Sometimes it was difficult to be hopeful, especially when faced with overwhelming events and mental health difficulties. Naz explained in her introduction that we may need a time of hopelessness to find hope and resilience - one of our members called this as seeing “glimmers of light to sparkle hope”.

Some of our members had experienced taking part in a “Hope Course” through their local cancer service or through a charity - the majority of our members found these unhelpful - they felt that hope is such a personal experience which cannot be taught. Some felt that terminology around hope was difficult. One member heard the term “no-hoper” being used to describe a woman who had died from her cancer. Acronyms such as “HOPE - having only positive experiences” were disliked. More helpful were the kind word and support from family and friends, including those in private groups such as BRiC.

What do we hope for? We hope that our future will be OK and that we stay well. We hope our cancer will not return or that it will not worsen. We hope our families and friends will stay with us when things are hard. We hope for new drugs and new breakthroughs for treatments. We hope our next scan will be good. We hope to see our children achieve their milestones and we hope to see all the seasons again. We also hope that our families remain healthy, that the Covid vaccines work and that life will return to some level of normal again. We hope that the time will come when we can be with our friends and families again. As one of our members told us “We hope to find the joy in every day”.