Thursday, 31 December 2020

Winter lockdown tips: BRiC's Collective Voice

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‘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.’



Wednesday, 23 December 2020

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

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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.

Sunday, 20 December 2020

Our favourite books: BRiC's Collective Voice

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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!

Wednesday, 16 December 2020

Three things with positive impact in 2020: BRiC's Collective Voice

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“What three things have made a positive impact on you over 2020?”

In our discussion this week, we looked at things which happened or we did over 2020 which has a positive impact on our lives. By introduction, Naz spoke about how depression can be exacerbated by the disparity between where we are and where we want to be. We have spoken in the past about the “positivity coat” we are expected to wear and that this can make us feel we cannot live up to those expectations. This has been a really hard year for all and we accept that we have no control over many of the events of 2020 but we can seek out those diamonds which we call glimmers of hope in our group. Selectively focussing on positive moments whilst not downplaying the negative aspects is very healthy. With this in mind, we asked the question “What three things this year have you done or experienced which resulted in a positive impact”

This was a lively discussion. There were themes which were cancer/health care related, work/education relates and personal/family related. Not surprisingly, very few of us found a cancer diagnosis or treatment a positive experience. Some did however feel grateful for the care they received from the NHS and that their treatment continued despite COVID-19.






Many of our member had positive changes to their employment whether it be returning to work after treatment, new roles, new jobs or even retirement. There was a feeling of satisfaction for some for a job well done. Some reported they had commenced or completed higher qualifications such as PhD or MSC.

By far the greatest impact came from things we did or experienced with family and friends or at home. Many of us saw the time of lock down a chance to spend time with our partners and children and to have more communication with more distant family and friends using online meeting technology. We loved baking (no wonder there was a shortage of flour!), cooking, making jewellery and having time in our gardens - especially with a spell of lovely weather in spring and summer. Some took time to challenge themselves by taking up writing a book or taking on walking or running challenges. New skills were described too - meditation, Reiki or learning a foreign language. Some of us were lucky enough to have taken a short holiday when restrictions allowed. There were small pleasures too - one member was very pleased that her car passed its MOT!




There were joyful events too - new babies in the family, engagement, weddings and new homes.

There was pride in the achievements of our family and friends; our children passed exams, gaining university places. We were full of admiration at how resilient our partners and children are when facing up to the challenges of this year including our cancer. There was also pride in helping out, such as setting up a regular quiz night or volunteering with the NHS.

Finally, we were grateful for the peer support within this group. The support of our members is invaluable.




Thursday, 3 December 2020

Chemotherapy effects and tips: BRiC's Collective Voice

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A recent Sunday discussion focused on chemotherapy, how we prepare for it, how we deal with it and how it affects us.

Naz explained that along with the physical side effects, research shows that cognitive function can be impaired by chemotherapy and many of our members related experience of “brain fog”, often lasting long after chemo has ended. Cognitive impairment can also be caused by the emotional and psychological effects of a breast cancer diagnosis; and made worse by the ongoing treatment many of us face. Some of us who escaped chemotherapy still recalled a feeling of “chemo brain”. There is hope, as shown in some of BRiC’s research, that we can improve our neural networks with specific training. But chemo-brain is just one of the many side effects we discussed, along with hints and tips on how to cope with chemotherapy, and some of the things we wish we’d known before it started.

For many of our members chemotherapy was the hardest part of their treatment. We recounted tales of horrific mouth ulcers, of sickness, utter exhaustion, diarrhoea, unbelievable constipation, of the well-known hair loss – but why didn’t anyone ever tell us that it would actually hurt when the hair fell out? We talked about broken or lost finger and toe nails, of veins ruined by repeated treatments, of a loss or change in taste and smell (the distinctive smell of the chemo unit, something few can ever forget) and of going off foods and drinks we used to love; there were cases of sepsis and hospital admissions, of chemo induced heart problems and diabetes, weight gain or loss, skin rashes and irritations, eyes and noses that dripped like leaky taps, neuropathy and joint pain, which for many lasts years after chemo. There were headaches and mood swings, there was fear and loneliness, and so many more side effects that can debilitate even the fittest and most determined of us.

Lots of us coped with chemo by reminding ourselves that the benefits would outweigh the side effects and that “it’s just four more treatments” or “it’s just two more treatments”. Having that light at the end of the tunnel gave us hope and strength to carry on. Our members with secondary breast cancer don’t have that luxury. There is no end to treatment; they may be facing many years of chemo side effects and just thinking about that prospect is in itself exhausting.



Our members’ experiences of preparing for chemo varied, with some having lots of information ahead of treatment, honest answers to questions about side effects and good advice on how to treat them. Others were given a leaflet and told to expect hair loss and sickness, but not much else. We all agreed that having the right information prior to starting helps. We wanted to be told what to expect.

You will probably think you are dying at least once.
You will tell yourself you just can’t do another treatment.
You will consider stopping chemo to get some relief.
You will have days where you cannot get out of bed.
You might be a lucky one who suffers very little.
You will probably put on a brave face and people will tell you how well you are doing, even though you don’t feel it – and you will probably get fed up with people telling you your head is a lovely shape and it suits you having no hair!
You will sit up all night in a chemo/steroid induced insomnia.

Members commented that having the BRiC private group was a tremendous help, knowing there would be someone else up in the middle of the night to chat to, knowing there was someone else who’d had the exact same side effect and might know the best way to deal with it, and just knowing that you aren’t alone in what you are going through.

Many of us say we went into some kind of superwoman mode, some had no choice but to continue to work, we often tried to carry on as normal to shield our families from just how bad we really felt. Some of us discovered that trying to be superwoman was not such a good idea, as partners, colleagues and friends didn’t understand how gruelling the treatment really was and as a result had little sympathy when we needed to rest.

Along with practical ideas, like stocking up on ice lollies, laxatives, tasty food, comfy clothes, soft hats (who knew how cold a bald head can be?!), flip flops in case of sore toes, something to do/read during infusions which can take a long time - we often just wanted someone who could sit and listen, hold our hand and not expect anything from us, someone who would do the chores without being asked, who would entertain the children while we rested or bring us our favourite treat.

We did have some members who sailed through chemo with few of the nasty effects and without fail they said they felt extremely lucky. Chemotherapy kills billions of good cells in order to get at the cancerous ones, the overwhelming feeling was that chemo is a special kind of hell, a necessary evil, a war zone, something that isn’t “over” the minute you walk out of your final treatment, and something that not all hospitals prepare us for properly. Knowledge is power and knowing what to expect can help, even if it’s just in a small way.

Tuesday, 17 November 2020

Impact of breast cancer on our nearest and dearest: BRiC's Collective Voice

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“The impact on my family and parents when I was diagnosed with breast cancer at 34 was enormous.”
Our Sunday discussion discussed how breast cancer has affected our loved ones, our dearest and nearest.

We were not surprised that our discussion raised many mixed and diverse experiences when it came to how our cancer had affected our family, our friends, and our children. One thing was certain though: that the emotional toll is there for them too.

Husbands/partners were thought of being excellent with the practical side of things. Some of us talked about how good they were with the housekeeping, hospital appointments and shifting work to be present with us during treatment and so on. Equally though, this dissipated with time, such that as time moved on they had had enough and believed that we should be cured, that they were ‘tired of doing everything’, and that we were lazy. Others not so much, they continued to worry about us, they continued to be our rock. It was agreed that the emotional stuff was harder for them to deal with, and their reluctance to talk and open up, made it harder for them to cope. We heard about depression and suicidal attempts, we also heard about partners leaving and shutting us out.

Telling our children and adjusting what we say and how we communicate, considering their age and disabilities, can be really hard. Our sons, compared with our daughters, some reported, found it harder to digest, but this eased with time. Our children were very instrumental in helping, they took charge, found information, encouraged us. But we also heard that children got bullied at school because of us, and they were uncomfortable to be seen with us in public.

Some of us reported that our children found it hard to talk, to cry, to express their emotions. We can spot the fear in them even when they try to hide it. We get asked if we will die or live with the slightest illness we experience. We make efforts to be honest to the best of our ability so that we can protect them, to look after them, and to nourish them, even so, some break down and need counselling. It helped if our children had friends they could confide in. For some, they have always seen us as a cancer patient, as they were newborns when we were diagnosed.




It can be very hard to talk about our cancer to our parents, especially if they are elderly. In fact we’ve avoided it if they are fragile or suffer from their own vulnerability. For some of us, our mums saw us through treatment, for others our parents abandoned us, either finding it too hard to deal with, and not wanting to discuss it. Because of this belittling effect, some found it easier to distance themselves from their parents. For many, our immediate family did not want to hear that our cancer is ‘ongoing’. Sisters and brothers are important, but again we spoke about how some had abandoned us and/or were not interested in supporting us. The opposite was true as well, with many reporting that their siblings were there in the thick and thin of it.

We acknowledged that for those of us with secondary breast cancer, it can be harder to communicate as pressures can run high for our immediate family. Some of us talked about how writing through our blogs can help them understand how we can be supported.

We were equally grateful for friends who travelled long distances to visit and support us, pleasantly surprising us with kind gestures.

Our members were grateful for having found BRiC: their BRiC family is who they go to. Moving forward courses and other support groups are valuable too.

We concluded that just as much as we need emotional support, our partners, our children and our immediate family need educating and emotional support so that they can care for themselves and us, cope better as well as know how to support us better. They can be better prepared for us and our needs and consequently they can feel stronger in supporting us, and not abandoning us. Hopefully research will emphasise this important point so that we can provide better support for our families.


Sunday, 8 November 2020

Coping in Lockdown #2: BRiC's Collective Voice

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The topic put forward by Naz for last Sunday night's discussion was: How are we feeling about the new lockdown?

Our responses and feelings varied for a number of reasons, not least of which was related to where we are based in the UK. Some of us who live in Tier 3 areas, and those of us living in areas where very tight restrictions have been in place for several months now, felt that not much was going to change. Some of us felt safer at the prospect of another lockdown, whilst acknowledging and showing compassion for those people, many of our own families included, who’ll experience financial struggles and job losses because of it.

There was a shared sense of sadness and frustration for all kinds of different personal circumstances. Striking a balance between acceptance, that this is happening again, and our understanding of why it’s happening feels hard for many of us. Feelings of apprehension, fear and loneliness are very real as some of us look ahead to the next four weeks with a feeling of gloom, not helped by the time of the year. A shorter and darker day with colder weather is quite different from the lockdown climate that we experienced the first time around.

Overwhelm and struggle was expressed by many of us, as was the need for a period of grieving and adjustment in this second round of lockdown as those living with secondary breast cancer consider the prospect of this virus being around for the whole of the remaining time that we have left. The sense of loss associated with COVID-19 eating into our time and cutting short the time of those whose lives have been taken by the virus was very much felt. Within our group, in the last few months, we’ve experienced tragic personal loss due to family members and loved ones dying from the virus and other conditions. We have barely had the chance to grieve for those who have died during the first lockdown and now we face the challenge of another.




The detrimental impact on our mental health and of our loved ones is hugely concerning which has caused lots of tears to be shed but amongst the tears, the care and support for one another in BRiC is palpable. Encouragement, care, love and support is an important part of our group. There are many of us who feel very anxious and vulnerable and who are trying to appear strong for our families. A key message within the discussion was a reminder about kindness and self-compassion. Trying to remember to be gentle towards our feelings is an important part of coping during the next month. Part of that is acknowledging how selfish behaviour from others causes us to feel angry and upset. Worries and grave concerns for family members who are experiencing serious deterioration and decline in the coming weeks sits heavily upon us too, as the prospect of being unable to spend time with them is a reality that feels so devastating.

Trying to find a balance between the loss that COVID has created and gratitude for what we still have is challenging. Finding space in our minds to let these “conflicting emotions co-exist” is hard. The Diwali festival in a couple of weeks' time, a 50th milestone birthday at the end of the month and other family birthdays are just some of the special celebrations that will have a very different feel and tone to them because of this lockdown.

Whatever challenges we face in the next few weeks, our shared support for one another will help to ease our feelings of loss, burden and sadness. Ideas for self-care strategies, tips for supporting our wellbeing and things to help bolster our mental resilience helped to make the mood of our discussion a little lighter. Whilst ongoing uncertainty lies ahead we will continue to shine a light for us all in this special space.



Friday, 30 October 2020

The amazing Vicky (late deputy head): BRiC for Breast Cancer Awareness

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We never tire of sharing the moving message Vicky Wilkes left for us all.

Vicky did so much for BRiC. She was one of the very first members and deputy head. She led our first few October projects and as we forge ahead with new ones each year, her voice is our guidance. Vicky died from secondary breast cancer on 20th August 2019.

'My relationship with cancer started in 2006 at age 31, but it was when I reached 40 that it got terribly serious and I knew my time here would be shorter than expected.

I had imagined growing old surrounded by my family, seeing my children through their school years, into adulthood, getting married and having their own children. It hurts so much to know I won't get to see these milestones but more importantly that I won't be here for them when they deserve to have their mum there on the special days of their lives. How can I leave these two children without a mum?

Each day is a gift and the only moment any of us really have is now. I don't want to go, I don't want to leave my family and friends, but I have no choice, I have done my best but it's out of my hands.

The one, worst, horrible, bad thing about this dying lark is that I have hated causing sadness. I really hope my children can be resilient and bounce back to be the amazing adults I think they can be.





I look at life through different eyes. I wish people would stop sweating the small stuff and appreciate life and how truly amazing it is. It's ok to find something annoying but then you need to quickly get over it and be thankful it's a minor issue.

As the great Stephen Hawking said.. "Remember to look up at the stars and not
down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.”

So when you do go outside and look at those stars in our universe, take a deep breath, appreciate your existence and that you are able to do these things.

Think about those things that happen to you, that you put a lot of weight into, but which are insignificant....no sleep, bad hair day, don't like how you look, got nothing to wear, house is a mess...just let all that shit go! My body is wrecked, my mind is wrecked, but I see even those things as pretty insignificant because what I really cared about was how long I had left here, would I see my next birthday, my children's birthdays, Christmas.... I needed to keep going, I needed another day with my family and friends and then I needed another and then another, I needed to be here.

Appreciate your body, embrace it but don't obsess over it and look after your mind, as that will look after you. Be grateful for the days when you are not dealing with anything serious and yes it's annoying but it will go away.

Stop the stress of buying stuff you don't need, with money you don't have, to impress people you don't like!

I learned from everyone who joined me on this precious ride that is life. I have laughed and cried with you and we are all part of each others lives which has helped shape the people we are! Thank you, all of you family, friends, nurses and doctors who did their best for me.

You've given me much support and pleasure. I'm glad to have known some of you for many years and just wish I had more time with others of you I've not known for so long.

For goodness sake people, enjoy life, take risks, be kind always, love, be curious about everything, look at the diversity of the world around you...it's incredible, travel, be a badass, smile, be gentle and forgive whenever you can.

Thank you all, now go and toast life with more alcohol than is good for you on this occasion, laugh, smile and have an amazing time.

Much love and thanks!
Peace out! X"
- Vicky

Tuesday, 27 October 2020

Gina's story: BRiC for Breast Cancer Awareness

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I finished radiotherapy just as lockdown started, my oncology check up was a 30 second call to see if I was ok, there was a huge nothing, no support nothing, just news of other cancer patients not getting their chemo or radio this caused a lot of guilt in me, covid has meant not dealing with the emotional impact.




- Gina

Sunday, 25 October 2020

Debbie: BRiC for Breast Cancer Awareness

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Hi everyone, I wanted to say thank you for the overwhelming support I was offered yesterday (by BRiC members.) I reached out and the response was incredible.

In any circumstances, a diagnosis can be an isolating and frightening thing. However, with Covid too, I feel we are all living in extraordinarily difficult circumstances.

My situation with secondaries has changed quickly and as a result I feel/felt disempowered and very lost. I slipped into being a patient and not me. I really miss my monthly support group, contact with Macmillan has only just been reinstated and while everyone at the hospital is lovely, I do not feel part of the process.

Yesterday many of you offered such compassion and support. I was also offered excellent information that means I can have some agency and know better what questions to ask. I am so very grateful.
I'm still on rocky ground but picking my way forward instead of feeling frozen to the spot.

This is such a wonderful space, thank you all for being wonderfully you xx
- Debbie



#breastcancer
#breastcancerawarenessmonth
#mentalhealth
#pinktober
#resilience
#secondarybreastcancer
#metastaticbreastcancer

Friday, 23 October 2020

Bal's story: BRiC for Breast Cancer Awareness

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All my treatment finished 5 years ago, reaching this milestone, I should be jumping up with joy but instead this has created a form of numbness inside me, a constant reminder of all the detrimental effects it has had on my healing process and that of my family.

My follow up mammogram and ultra scan appointments for September have been cancelled and rescheduled for next month.

These uncertainties push my anxiety levels at an all time high!

- Bal, dressed in pink, on Wear It Pink day

Thursday, 22 October 2020

Things we wish we'd known: BRiC's Collective Voice

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BRiC provides insightful nuggets of advice that we wish someone had told us at the time than we had to learn through experience.

“I think knowing makes me better able to cope. Not knowing leads to nasty surprises, a lot of fear and sometimes thinking that you're going mad.”

The shock
“I think initially it took me a while to accept or understand that you go into shock upon diagnosis as soon as I realised I could start to get my head round it.”

That everything in your life is about to change
“I wish someone had told me how this would change me and my life forever. That I will forever fear a recurrence and that nobody outside of this community will understand that. I wish I had known that support was vital, that I needed to take care of myself. I'm glad to be here, and I'm grateful. But life has never been the same.”

“Life for me also is not the same....I have had to tell them that I will not be allowed to return to my post due to the physical limitations. It’s really tough.”

“I wish someone had been forthright about having to make permanent adaptations post treatment and how quality of life will be, not may be, affected going forward.”

That the fear of recurrence – it never goes away
“I wish I knew how everyone else around me would move on when treatment was over and get back to ‘normal’ while I still feel mired in fear and fatigue. I wish I’d known how hard it would be to explain to those who haven’t had cancer that the fear never goes, that you can’t just ‘get over it’. That every ache, pain, scan, test is terrifying and that being told ‘don’t worry about it’ is frustrating and diminishes how real the fear is.”

"that once you have secondaries this fear does not go away. Scans are more frequent and any hint of progression throws life back up in the air as you run through another line of treatment. Ongoing scanxiety is all too real"

That I will have a meltdown after active treatment
“At the end of active treatment i had a complete emotional meltdown and seriously considered suicide. I felt i couldn't tell the medical team who had worked so hard to get me to that time. When i did break down during Herceptin treatment i was told these feelings are common at the end of active treatment and especially after sepsis (which i'd been hospitalised with weeks before). I was furious that i wasn't warned to look out for this, i spent weeks in emotional agony terrified to ask for help.”

“my breast surgeon told me at my first appointment when diagnosed don't worry I'm confident we can cure you. Well yes you cut the cancer out but now the fun really starts and I wasn't prepared for that”

“I wish someone had told me that after treatment finished I wouldn’t be able to forget about it as if it had never happened.”

That end of active treatment was the beginning of my journey

“I wish someone had told me the truth when I walked away from my final radiotherapy: the truth that this was the beginning of the journey rather than the end. I would also like to have known how dismissive some friends and family would be about any continuing worries. Almost all greeted me with 'well that's done, how lucky it was caught early, all better now.' I would like to have been informed about secondary breast cancer, and I wish someone had told me how lonely the fear would feel”

“I remember my family took me out to dinner to celebrate. I couldn't eat and spent the evening fighting back tears. Then I stayed in bed for several days, exhausted to the core.”

What Chemobrain is

“I wish I knew about chemobrain and forgetfulness, memory loss, difficulty concentrating and paying attention, and how this can affect my self confidence and self-esteem for a long time. I wish I was told that I can be feeling like a zombie and that it will be hard to go back to work.”

“I wish I had been warned about the negative cognitive effects of chemotherapy long after treatment has finished and what to do to improve brain function recovery.”





That I need time to grieve my losses
“I wish someone had told me a breast cancer diagnosis means you have to give yourself time and space to grieve your losses. You lose breasts, hair, feeling healthy and carefree, your femininity, the woman you used to be beforehand, your sanity and all in one fell swoop. Nothing will ever be the same again so, be kind to yourself."

“I wish someone had told me that the psychological impact on my hair would be bigger than the impact of the mastectomy. As you say knowledge is power (or as Foucault would say power (those who set the agenda) is knowledge”

“I wish I had known that I would grieve losses that I had no idea of.”

“I wish someone had told me that my hair loss after the first chemo was so dramatic I wish someone had told me the angst will go and I will be fine”

That hormone therapy can affect your sexuality

“I wish someone had told me about the lack of sex and intimacy lack of libido.”

“I wish someone had told me that I would fear sex and that it would be painful because of lack of estrogen due to Tamoxifen.”

“I wish somebody had told me about how Letrozole on top of ovarian radiation would cause vaginal atrophy making sex painful and ….. eradication of a healthy libido. It’s keeping me alive and of course I’m grateful for that but it’s the fact the impact of the drug on my body has never been discussed. I wish somebody had told me that worrying is an utter waste of time because life is short”

“Then no mention of the impact of the hormone therapy. I do wish the doctors had been honest, realistic.”

That treatment after-effects are harsh

“I wish someone had told me about the after- effects of treatment also. The pain from bones and joints, damaged intestines severe neuropathy, developed arthritis in my hands from anastrozole, and the psychological effects. I was always a happy person, now I have become a bit more serious, developed depression, thinking about the future and reoccurrence, was told I have only an 18% chance of being alive in ten years. I sometimes wonder was it all worth it. But life goes on and we have to change and face new challenges “

“I wish that I was told about how Tamoxifen and AIs would affect you cognitively, reduce your libido and make intimacy painful and difficult. “

“I wish I'd been told that radiotherapy doesn't just make the breast firm, it can also cause distortion and feel painful to touch.”

“I wish someone had told me about post mastectomy pain and nerve pain straight after surgery. It was a shock and frightening the different pains and sensations I had. Now I’m left with pain that no one seems to think is bad enough to worry about because I manage without painkillers. It has a huge effect on me emotionally though.”

That I could suffer chronic fatigue

“that I would have to alter my working patterns in order to manage the chronic fatigue.”

“I wish I had known how much the fatigue would challenge me in the long term. I am still suffering with it 9 years later and when I get tired I get weepy and irrational which I hate.”

“Fatigue meant l eventually had to give up my teaching job.....just didn’t have the same stamina either.”

What secondary breast cancer is

“I wish someone had told me the stats on primary BC developing in to secondary BC, and what signs to look out for. I thought when I had “beaten” it, that that would be it....then less than a year later.....BAM.

“I wish that secondaries were more talked about and less of a taboo conversation...”
That I would experience menopause

“I wish I knew that I would experience menopause and what to expect .... this has been so hard for me.

That the positivity cloak can be too heavy to wear

“I wish someone had told me about how much pressure there would be to be 'positive' (not just realistic and rational) and that there are so many possible reasons that 'it was my fault' (which it ain't).”

“I hate the implied pressure of “you must be positive, or else”! Or worse still the implied finger of blame “you brought this upon yourself by your lifestyle choices”! Yes I enjoyed cake/chocolates/a glass of wine/carried a little extra weight just like thousands of other women who DO NOT get diagnosed with cancer!”

“if I had a pound for every time I’d been told how positive I am, I’d be spending the rest of my life on the Riviera. The references to positivity are often used by well meaning people when they don’t know what else to say: ‘be postive’, ‘stay positive’, I don’t think the cancer really listens “

“the first moment i realised it was bad news was when the nurse in the ultrasound suite said something like "a positive attitude is so important" i wasn't feeling positive then and it made me feel like a failure.”

"So much better if told that need time to mourn - will pick self up again ... but also positivity and battling, etc. ultimately doesn't decide the outcome!”

That my medical team could have pre-warned me about side effects

“I wish the hospital were more honest about the permanent side effects and not just tell you about the side effects during active treatment.

“I wish the medical team were more upfront about recovery time, likelihood of complications post treatment eg Lymphoedema and cellulitis to name but two.”

“I specifically asked the medical team to tell me everything about the treatment and what could happen but all I got were booklets that suggested that the majority of patients would be back to “normal” circa 12/18 months post treatment what a load of wishful thinking that was.”

“I don't think I really wanted to know about what was coming in terms of treatment and after effects.....I would have spent too much time worrying about the possible impending problems.......saying that, I have been very lucky in that if I had a problem, I had a good unit/team at the hospital and online, so I could ring/ask questions and get answers almost immediately. That was a life saver. I put my trust in what they were telling me was going to be the most effective treatment”

That I would never feel the same again
“But most of all I really wished someone had pre warned me that I would never ever feel well again (as I had pre treatment) and that it would become my new normal”

“I wish I had known at diagnosis that the impact of treatment was not just the first months/year but so much more long-lasting.”

That cancer is NOT a battle to win or lose

“I hate the fight/battle language. Makes it seems that those who die of cancer are weak or failures in some.”

“I feel like that word has been thrown at me whenever I’ve tried to tell someone how I’m feeling. It makes me feel like I’m failing. When I felt so low last week and posted on this page it was so lovely not to hear it”

“I’ve found friends and family very hard to deal with and pretty much avoid them so I don’t have to try to explain myself.”

That support groups are invaluable

“Mentally you understand the physical side of the op, but the psychological side feels somewhat neglected. They keep saying there's support, but there's a long waiting list to access it”

“After my active treatment I found BRiC and with it the emotional support and understanding I need to keep me going.”

“Couldn’t have got this far without these kinds of support groups.”

“We need more timely info throughout our treatment and beyond - and an easy way of accessing it”

That the ‘new normal’ is hard to identify with
“that ‘normal’ doesn’t happen for many of us - then everyone around us thinks we’re just crap moaners ...”

“I have yet to come across one of those ‘back to normal in 12-18 months’ ladies. Good for her if she is out there but this is not achievable or real for the majority of us”

“I’d love to meet one just to find out why she’s so different to the rest of us mere mortals”

“When I saw him (my surgeon) last month about the continual pain, I was told I’ve got to stop worrying about cancer now and the pain will stop. Felt really told off.”