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.