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

 

“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.

Chemotherapy effects and tips: BRiC's Collective Voice

 

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.

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

 

“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.

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.

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

 

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

30/10/2020

Gina's story: BRiC for Breast Cancer Awareness

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

27/10/2020

Debbie: BRiC for Breast Cancer Awareness

 

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

25/10/2020