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

Bal's story: BRiC for Breast Cancer Awareness

 

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

23/10/2020

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

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.”