Our anxieties coming out of lockdown: BRiC's Collective Voice

 

The topic for a recent Sunday night’s discussion suggested by our lovely Anita Traynor, focused on how we feel about, ‘coming out of lockdown’. Naz led the discussion by sharing her personal reflections as we explored our thoughts and opinions on the topic.

Lockdown has played an important part in protecting our well-being and in doing so it’s also ‘over-protected’ our social life and social connections as well as our relationship with the outside world. Anxiety about whether it will ever be the same again, anxiety about whether we will hit another wave and go back into lockdown, the fear of whether we will be exposed too much and become vulnerable, and anxiety about social interactions and how they will 'look'. A lot of us have changed the way we work and study, so there is the uncertainty hanging over what it will look and feel like should we go back to the way 'things were'.

Some of our members had mixed feelings about all this, whilst many of us felt a nervousness, some members actually were not anxious, as all they seemed to hear was how scared people are. There was a common understanding around this as it has been one ‘heck’ of a year and the situation is set to continue for some while yet, as described by a majority of us.

Many of our ladies have made plans and need the ‘taste’ of normality in order to look forward to the future with optimism.

A number of our members have become much more solitary and the loneliness has had a significant impact on our mental health and well-being, we acknowledged similar feelings when we went through our breast cancer journey, however we found that trying new things like meditation, arts and crafts, experiencing the beauty of nature has helped us cope better.

We are worried about resuming ‘normal’ life as some of us don’t wish to go back to how busy life was before the pandemic, and have made firm decisions to learn to say ‘no’ to too many social engagements, as many of us are most comfortable and safe in our own homes and familiar surroundings.

Some of us who are keyworkers have travelled to work throughout the lockdown despite restrictions in place. Seeing patients has been tough for nurses; the anxiety around having to start organising clinics for patients and the fear of how safe we may feel is going to be a challenge.

Many of us are excited and looking forward to seeing our families, friends and colleagues. We yearn to hug our nearest and dearest, the laughter, the touch, the sharing of emotions and face-to-face meetings. However it may not come naturally and may take some time to adjust to a ‘new normal’.

The sadness around not being able to be with others during their hour of need, not being able to be together at funerals to support each other and missing many milestone events like, weddings, birthdays, new babies, graduations and the list goes on. But we have been fortunate enough to have had the internet technology we have nowadays, which has let us connect with our loved ones and mark these occasions differently.

We sometimes bounce between two opposite views. Sometimes we are desperate to get back out into the wider world, eating in the restaurants, travel, theatre, going to the cinema, seeing friends and on the other hand we feel anxious about whether we will ever feel safe in these types of surroundings.

Whilst some of have had the option of working from home, we now fear the pressures of employers wanting us to return back into the office. We are experiencing negative thoughts, like, will I be safe? Would they accept me? Can I still do the job? We need to be open, honest and share how we are feeling, which can be a challenge, so therefore circumstances make us feel trapped.

The rollout of the vaccination programme which is in place gives us hope and a sense of protection, that our fears will subside in time, as we learn to live with the virus and also have some kind of freedom to do what we enjoy.

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.’

Coping in Lockdown #2: BRiC's Collective Voice

 

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.

Mental Health Awareness Week - Naz (Founder of BRiC)

Mental Health Awareness Week 2020.

"Slowly, quietly, never giving up"

BRiC celebrates mental health awareness week 2020. It showcases its members' resilience and coping tips on what has helped in COVD-19 lockdown stressful times.

Every day, we will be posting a few of our members' messages, in the hope to show how we've embraced our anxieties as well as taken small steps to alleviate the distress and uncertainty we've faced. How we've exercised courage to face our fears, and how we've risen to nourish the wounds we've endured as a result of COVID-19 collateral damage to our treatments. The meltdowns, the emotional rollercoasters. We share how self-compassion has helped us when we've been low.

Mental health is important. Just as we nourish our wounds to heal we need to nourish our mental health to heal from the distress it faces in scary and uncertain times.

It is not an easy task, but in the middle of every difficulty lies opportunity, and that is what resilience is about. Finding that opportunity, and to keep going, slowly, quietly, never giving up.

Sending love and virtual hugs to all of our followers and the bigger world.

Naz xx (founder of BRiC)

#mentalhealthawarenessweek

#resilience

#COVID19

#lockdown

#breastcancer

#secondarybreastcancer

#BusyLivingWithMets

The collateral damage of COVID19 on breast cancer treatment: BRiC's Collective Voice

“Who wants to have cancer in the midst of an epidemic?”

Our Sunday discussion last week talked about the collateral damage of COVID19 on breast cancer treatment and well-being.

For thousands of women awaiting treatment for breast cancer, COVID19 has caused considerable delays and uncertainty, with many breast cancer appointments being cancelled, postponed “indefinitely”, or “until further notice”. These have applied to key operations, chemotherapy treatments, follow-up scans, appointments, well-being courses and consultations. The waiting game this has produced means that we don’t know when our medical teams may come back to us to reschedule our treatments, scans and appointments. For some however, appointments have been moved to other hospitals or done over the phone.

The uncertainty has led to many of us feeling unsafe, insecure, and afraid of how these delays will be affecting our cancer status and cancer growth. Imagining women with secondary breast cancer, of course this uncertainty has a much bigger psychological and physical damage. What do you prioritise, cancer treatment or COVID19? There were concerns over whether women with secondary breast cancer have equal rights to access ventilations when there is a shortage of them?

It appeared that many of us had been sent letters and texts at different time points, some of us having only received messages recently to lockdown for 12 weeks. Inconsistency in the manner by which these messages were communicated has caused a great deal of distress for many of us. The mixed reasoning behind these messaging patterns has been a point of ill communication. We have turned to each other for reassurance and help. We have been calling helplines for clarifications and explanations. We are anxious for ourselves and for others in our position. We are in the dark and want more clarification.

Some of us explained that it could be a case of postcode lottery with some treatment centres open as usual and others not. But this has added to our confusion.

Our members believed that much more should be done about seeing to cancer patient treatments in these uncertain times, with much worrying consequences for those who are recently diagnosed with breast cancer.

It is an emotional roller coaster. How have we coped? We’ve been raising our concerns in the group, distracting ourselves doing DIY, waiting and waiting for some imminent solution to the chaos that a majority of us have found ourselves in. Many of us have found ourselves in incredibly vulnerable situations and are scared. The uncertainty by which services may return to normal is adding to this distress. We can only hug and hold hands virtually.

While we want our voice to be heard clearly, we also want to thank all of those who are doing their best in the frontline to help us. We are grateful and we live in hope.

If you are a woman in the UK with a breast cancer diagnosis and want to join our private closed group please message us here or leave your name in the comments.

#BRiCteam
#breastcancer
#mentalhealth
#resilience
#COVID19
#lockdown

COVID-19: The World is Closed

Utterly superb, moving and brilliant, this poem by our own Deputy Head of BRiC, Anita Traynor, captures the essence of how we feel during this pandemic. Also, published on the Breast Cancer Art Project Website, here: https://breastcancerartproject.wordpress.com/2020/03/30/the-world-is-closed/

Sending love and wishes for good health to all of us.