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

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.

#breastcancer

#secondarybreastcancer

#diagnosis

#treatment

#resilience

#mentalhealth

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

 

“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”.

How we feel about virtual appointments, Do we feel safer or forgotten? BRiC's Collective Voice

 

A recent Sunday discussion was all about virtual and remote appointments, how we feel about them and how to get the best from them. A very pertinent topic at the moment, suggested by one of our members, who asked “Do we feel safer or forgotten?”

One of the first points which became clear was that we felt we need to be more assertive than usual in order to ensure we are understood, that our concerns are taken seriously and that our questions are answered. It was mentioned that a lack of confidence could hinder this and leave us feeling ignored.

Many people suggested writing things down before the appointment; having another person in the room to take notes and remembering to ask for things to be repeated if needed. This was a problem often encountered by our members with hearing loss, a telephone call can be particularly difficult without the benefit of lip reading or seeing facial expressions. But the advent of the many video-call options has proved beneficial in alleviating this issue. In the current climate we generally have to attend appointments alone, without what is often a vital support, so being able to have someone with us during an online or telephone consultation can be a real positive of the “virtual appointment”.

Our experiences of online and remote consultation varied widely; many felt they were more prepared, having spent time prior to the appointment thinking about their expectations and needs. For GP “visits” filling out an online form before a telephone call often helps us focus on what exactly we want to discuss. Although some of us find the “tsunami” of questions on the forms overwhelming. For those of us who are at the early stages of diagnosis and treatment, the telephone or online consultations are not necessarily ideal, although often easier if we are further down that line. A common theme was a feeling that it was easier to discuss things openly because of a perceived distance between ourselves and the person at the other end of the call. Lots of our members access counselling, which has mainly now moved to remote sessions; for some this offers a whole new way of looking at things, enabling them to feel freer to discuss issues they perhaps found it hard to talk about face-to-face. Sadly, for others, the lack of face-to-face interaction left them feeling like the sessions were of little use.

One of the things which came up many times was the convenience of not having to travel, of avoiding busy hospitals and waiting rooms, public transport and of course the weather. Some of our members miss going to appointments, especially during lock-down when just getting out of the house can be a treat, even for the most mundane of reasons.

Having to chase doctors and be persistent is important, requesting follow-up calls and results and the amplification of our old friend “scanxiety” was often mentioned; but a positive outcome of the increase in online communication means that for some of us results are emailed much more quickly than when we had to wait for the next face to face appointment. One member only got a much needed appointment after breaking down in tears on the ‘phone; another said she thought she only got her appointment because she lost her temper – we are all under a great deal of stress from our cancer diagnosis, this is amplified by the current restrictions and tempers can be frayed. However, many members noted that they were aware of the exceptional pressure on the NHS and the knock-on effects it is having across the service. Concerns were raised in our group for the safety and well-being of the NHS staff, for their own mental health having worked through this crisis. There was vast praise for the teams who have adapted their systems and done everything in their power to keep our treatments and appointments running. It’s true things haven’t always run smoothly, for some people there have been delays and missed appointments, some will always prefer to see their practitioners face-to-face.

It was suggested that we, as members on an online support group, have an advantage in being familiar with IT and the capabilities of the internet, but perhaps for others it might be a huge challenge to access a video call. For those with sight or hearing loss, or a lack of confidence, preparing for and negotiating a video or telephone consultation could be stressful and upsetting.

The main advice which came from our discussion was that in dealing with this ever-changing system we need to prepare; write down our questions, think about our expectations, ask for things to be repeated or sent in a letter afterwards, have someone with us for support and try not to allow ourselves to be rushed through a consultation. It is also worth remembering some of the more positive outcomes, less travel and less time wasted in waiting rooms for example. For some, telephone and online consultations are too impersonal and will never replace face-to-face visits, particularly if a physical examination is needed. There was an underlying fear that we may never go back to the old way of visiting the doctor and a general agreement that sometimes, we need that personal interaction more than the convenience of a call. But we also agreed that with good preparation a virtual appointment can work well.

"Why I am not breast cancer free." Reflections of BRiC's founder on her 8th cancer anniversary

 

Eight years ago, today, at around 7pm, after a stressful afternoon of tests I made my way to the hospital exit, when a nurse’s voice running behind me brought me back to my ‘to-be’ surgeon’s room. The notes on the desk gave it away: three grade 2 tumours, 9 cm of grade 3 DCIS, and lymph node involved. My brain turned numb to ask my surgeon ‘why’, but the remains of that day play clearly in my vision, with my then 2 year old daughter’s face lighting up as I got back home. My late mum cooking a lovely meal. It is amazing how the brain can switch between different emotions to protect us and to help us make sense of our experiences. Shortly after, my brain went on a speed train trying to plan, but it kept getting stuck at different junctions.

Paradoxically, as I pictured the end of my life, I learned that cancer was giving me a different and new ‘life’. How can cancer give you a new ‘life’? It sounds like a contradiction in terms. But, its true. Cancer gives you a life many of my kind struggle with, but we try our best with gratitude and hard work. An exhausting life with challenges we are encouraged to take, quality-of-life limiting changes we have little choice but to adapt to, and the despair because we are too emotionally and physically exhausted to sustain the roller coasters. In short, a life with a foundation built on the psychological and physical costs of cancer diagnosis and treatment.

Adapting successfully to the life changing experiences of breast cancer does not make it OK for breast cancer to exist. It is not OK for a woman to be diagnosed with breast cancer every 10 minutes in the UK. It is not OK for 30% of them to get secondary breast cancer with an average lifeline of 3 years and a quality of life fuelled with endless toxic treatments that eventually stop working. It is disgraceful and a real threat.

Resilience is more than accepting and adapting to life limiting changes that breast cancer imposes on us. It is about growth and planting new seeds and nourishing them amid the changes we continue to adapt to. Breast cancer takes away control and this can be frightening because it can come back and haunt us again. Resilience teaches us that we can embrace this fear and it is important that we do not simply GIVE UP, but thrive the roller coaster with the highs and the lows. This, I have learned from many of my friends with secondary breast cancer whose control is much more limited than mine.

Whatever the circumstances, we take our cancer forward with us. This doesn’t mean that it can take over our thoughts and what we do. It has its place. An important place because it is from this place, from this platform, that we can rise to our best.

This is why.

I am not breast cancer free."

Naz

Winter lockdown tips: BRiC's Collective Voice

 

‘Please let there be light.’

Our heartfelt request to see us through the winter months of lockdown is sunshine. We shared tips for not only surviving but thriving during these winter months when we are restricted in our activities. Everyone who is well enough to get outside agreed that a walk in the fresh air is the best way to keep our spirits up, even better in daylight but for those working who may not be able to get out during the day, then an evening walk is also beneficial. Sunshine can activate parts of the brain that bring us pleasure, and so we grab it when we can. In these days when we can’t plan or look forward to things - in fact we are more likely to have plans scuppered at short notice as the rules fluctuate - we must seize the day and make the best of what we can do. Constant disappointment does get us down, our brains are tired from dealing with our cancer and the additional uncertainty that covid brings, and we can easily feel low and unmotivated.

Many of us are sorely missing our friends, family, activities and freedom. For those who like to plan, having a routine and structure to the day may be helpful, even if we're at home for the day e.g.scheduling in exercise, planning what we're going to cook for dinner, deciding when we're going to take our walk depending on the weather forecast. Goal-setting is useful, short or long term. Many have taken the opportunity to learn new skills, perhaps new craft activities, a musical instrument, painting, calligraphy. Leisure activities at home have brought joy, and we’re making the most of music, television, DIY and board-games. We incorporate exercise, mindfulness or meditation into our day, taking advantage of online classes and courses. We are reading and writing, challenging ourselves with puzzles, dancing and phoning and zooming family and friends. We are cooking new recipes, baking bread and cakes, and sometimes sharing our products with others which brings additional pleasure.

The lockdown rollercoaster that everyone is living with has many parallels with the rollercoaster that is cancer treatment, where we wait for scan results and make a few short term plans where we can. This is especially true when we have secondary breast cancer, when treatment is ongoing and scans and tests become a regular part of our lives. We live from one to the next, hoping for good news, adapting to bad news. ‘Entirely exhausting but end up looking out for little things’ as one member put it. We may be missing activities and people, but we make small plans and live for the moment, making sure that we don’t just fritter our time away or end up ‘slumped with no idea of what next.’

Many of us find our work rewarding and a distraction, though for those working close up to Covid or in different conditions (e.g. working from home) work may be more challenging and stressful than usual. Making sure we get a break from work which includes getting outside is a useful goal to aim for.

Getting closer to nature is a bonus for many of us, and a simple exercise was suggested by one member: sky watching. It can be done from indoors if the weather isn’t good or you’re not feeling up to going out, perhaps with the window open to get the benefits of fresh air. ‘It’s an opportunity to stop, pause and notice the wonder of the sky.’ It can be done anytime, start with five minutes, and just notice the clouds or the stars. It can be very soothing.

Asking for help may also be key to getting through, as we strive to be more honest and authentic in our day-to-day life. One member described how she made a list of things she wanted for Christmas, not just gifts but activities too, and how she bought some items ready made rather than making it all from scratch. She also handed out tea-towels for family members to dry up with. Many of us are practising accepting and making the best of limitations, whether that’s relating to our own physical or mental capability or the restrictions the covid rules put on us. We acknowledge that we are sad about the things we miss, and then we move through these feelings and find ways to be kind to ourselves. If we can’t concentrate to read, we might listen to audio books instead, for example.

Some of us are treasuring the extra time and space that lockdown is providing. Looking at lockdown as a chance to take stock and knowing that although we don’t know how or when it will end, trusting that it will end, can be helpful. ‘Lockdown gave me time for me and I’ve finally realised I’m not selfish putting myself first.’ Not feeling guilty for looking after our own needs was a recurring theme for many of us. ‘Trying to be good to myself and doing something each day for me.’

What does Quality of Life mean to you? BRiC's Collective Voice

 

What does quality of life mean to you?

The topic for this Sunday night’s discussion suggested by one of our lovely admin’s, Bal Nanray, focused on the question, ‘What does quality of life mean to you?’ Naz led us into the topic by contexualising this discussion from a research perspective as we explored our thoughts and opinions on the topic:

“In research, quality of life is one of the key outcome measures that is used to assess the psychological well-being of individuals.”

There is a shared understanding that for many of us, quality of life diminishes following a breast cancer diagnosis as we try to navigate our way through surgery and subsequent treatment regimes where long term exposure to cancer treatment affects us physically, emotionally and mentally. Although we have all experienced a breast cancer diagnosis, we know that this affects each of us differently and, in the same way, quality of life means different things to each of us. However, there were many shared views on quality of life that were woven into our discussion.

Many of us felt that quality of life centred on our ability to be physically and mentally well enough to be able to do the things in which we find pleasure. It was noted that often, these are the things that we took for granted prior to our diagnosis of breast cancer, leading to feelings of gratitude for the things that we can do and take joy from. This included a range of things that we enjoy as individuals, including having a level of cognitive functioning and concentration to allow us to read literature. Being able to get outdoors and close to nature rated highly on our list of things that contribute to our quality of life.

For some us of us, hard decisions have had to be made about continuing with breast cancer drug treatment as we have been forced to weigh up the limitations and physical burdens that this poses for our quality of life.

Being able to improve the quality of life for others was another discussion point linked to individuals’ feelings of self-worth and self-esteem. As one of our members expressed, the extent to which she can feel ‘useful, helpful and make a contribution to our local community’ was a really important part of their overall view of quality of life.

Having a dog in the family brings great happiness to several of our members and is another way in which quality of life is enhanced for them. A sense of purpose has a huge impact on our lives, as does being involved in activities that help to contribute to finding inner peace and calm.

For all of us, the COVID pandemic has highlighted the detrimental impact of loss of freedom and choice, both fundamental things that are required to achieve quality of life. Having aspects of our lives severely affected by this virus serves to illustrate that without freedom and choice the quality of our lives is so much less. As women living with and beyond a breast cancer diagnosis, we recognise that it has forced us to look at our lives in microscopic detail. Part of this is cultivating our ability to say ‘no’, to free our time to do things that contribute towards our wellbeing.

The view that quality of life in many ways overrides quantity of life is a strong feeling amongst our group, vocalised in this very safe place that we share. Evermore so following a breast cancer diagnosis, we value our independence and ability to participate in things that we hold dear.

We each have our thoughts and ideas about what quality of life means to us. As is usual in our Sunday night discussions, we have been able to share with one another and explore a hugely important topic. Quality of life is everything. Each of us understands its relevance to our lives.

Thank you to everybody who was able to contribute to our quality of life conversation.

Our favourite books: BRiC's Collective Voice

Books and books’’ Our Favourites!

This week our Sunday discussion was about books, our favourite ones and how they may have shaped us as human beings.

Naz explained that as an academic, she reads books that are more about research than she reads widely about the ‘real’ world!

For many of our members, when we read it helps us relax, and provides a sense of release from negative thoughts, or a bit of pure escapism.

Many of our members found reading can actually make us feel motivated and a sense of happiness.

Some of our members found reading difficult/challenging after a breast cancer diagnosis, due to the traumatic experience of treatment and our ability to concentrate which declines, so therefore some members have turned instead to audio books as an alternative.

We feel as if the books draw us in, trying to make us a part of the storyline. Whenever we read a book, the world vanishes and nothing else matters other than the tiny bundle of pages in our hand.

It’s like an addiction, and its touch makes us feel inspired.

The mere presence of a book in our hands brings a mixture of emotions; laughter, sadness, excitement, inspiration, feeling loved and many more different emotions that we experience.

Many of our members have fond memories of their childhood books and how magical they made us feel and the written word can be so powerful and speak right to our soul.

One of our members even named her granddaughter after a book that she enjoyed so much!

Certain books had the most profound affect which resonated with some members who have experienced and suffered child abuse at the hands of their parent and now instinctively understood the behaviours were wrong and how manipulation can be the cause of us in believing that it’s your fault as a child. But after reading particular books we realise the ugly truth about them and suddenly don’t feel so alone and isolated and choose not to repeat the cycle of cruelty and become an empath instead.

Some of our members enjoyed reading books when they were going through treatment and how moved and inspired they felt and it wasn’t all depressing, in a way, helped make sense of many things that we are feeling at the time, can also be very thought provoking when couples don’t communicate enough when we have had breast cancer and constant injunctions to be positive.

Many of our members have been influenced by books and found them therapeutic before/after breast cancer.

A list of our most loved books, handpicked by our members.

Enjoy!