Feeling Depressed

Depression. It's a word that has come into our everyday language, sometimes in ways which are not so helpful. We all feel sad, we all feel low, but when someone experiences depression, these feelings persist for weeks and months. Depression is not a sign of weakness. It's not something someone can simply "snap out of."

 

Clinical depression affects people in different ways and takes many forms, including feeling sad and unable to cope with everyday life, feelings of pointlessness, desperation and in severe depression, suicidal thoughts. It can cause physical symptoms like fatigue, pain, insomnia and loss of appetite too. Depression can be a lifelong problem for some, with episodes being triggered by stressful life events and experiences which are traumatic - like a diagnosis of breast cancer. Depression can also come in cycles, seemingly without any particular trigger.

 

We poured our hearts out, women with a primary breast cancer diagnosis and women with secondary breast cancer, sharing some of our personal experiences of depression. We described dark days with no zest for life, a weariness that took away our motivation to carry on.

 

Many of us described becoming depressed once active treatment had ended; the hospital appointments cease and, with them, the structure that kept us going. Everyone around us expects us to be back to our old selves and it’s time to go back to work or other routines. However, we feel shaken and lost, our confidence shattered by the whole trauma of invasive surgery and treatment as well as continuing to deal with longer term physical side effects. We may wish to protect those around us and pretend we are back to normal, or we may be made to feel we should have ‘moved on’ once the primary treatment has ceased. It’s easy to see how depression can either creep up on us, or hit suddenly as the enormity of what we've just been through hits home.

 

The debilitating effects of hormonal treatments taken by so many women, or, early menopause symptoms, increase the psychological demands we face, causing us to experience mood swings and fatigue at a time when we are already psychologically vulnerable.

 

Women with secondary breast cancer face unique psychological challenges - living with the knowledge that we cannot be cured, our treatment is ongoing and our regular scans and checks cause great anxiety as the quest to halt progression continues. We cherish every day, but we can also experience bouts of deep depression as the relentless treatment regime punishes our bodies and minds.

 

Depression can make us feel worthless, it can strip us of all joy in living and make it difficult to accomplish everyday tasks. Fortunately help is available. Many of us shared that we had found talking therapies such as counselling, psychotherapy, Cognitive Behavioural Therapy and support groups helpful. Exercise - in many forms - can also be helpful. Anti-depressants and sleeping tablets have their place too.

 

Depression can mean we have to rest and take time away from work and possibly family leading to isolation and contributing to feelings of hopelessness. Some of us spoke about times in our lives when we felt we could no longer carry on. We also described how something or someone prompted us to reach out for help, to seek support from professionals, family and friends to get better.

 

Naz explains that depression presents an evolutionary paradox to scientists. Is depression a cry for help? Is it an attempt to conserve resources? Does it represent an exhausted brain? Is it a consequence of chronic anxiety? Is it a state of no hope, helplessness, and repeated failure? There is no future to look forward to. Is it a chemical imbalance?

 

Depression, Naz told us, is all of these things, but mostly it signals an exhausted brain, a brain so full of fear, anxiety and negative and traumatic thoughts that no room remains for cognitive thinking and common sense is replaced by irrational hopelessness. The neural pathways involved in goal driven behaviour are no longer working efficiently, and there is a reason for this. They can’t.

 

 

How Do We Cope?

 

For many of us, a first encounter with serious ill health or depression taught us how to look after ourselves. We learn to spot signs of sinking into depression and seek help to prevent it before it gets a stronghold. We learn to practice extreme self-care, and to reach out to each other for support.

 

However desolate depression makes us feel, there is always a way back up. Naz told us how we may learn to thrive following depression, as our severely depleted brain resources slowly but surely return to normal. We can, with the help of others, bring ourselves back from the brink by training our brains to respond differently, by practicing cognitive focus. There may come a time when we can use our depression to our advantage, beating it down with determination and our will, our desire to overcome adversity and thrive again.

‘Let it Go’: Overthinking and how to overcome it

 

Our experiences of overthinking the past (also known as rumination) and our fears about the future (also known as worry) is much of a topic for discussion in BRiC. 

 

We have shared how overthinking can sometimes get the better of us, that we wake up at weird times in the night and get stuck in these repetitive negative cycles of thinking, how it can interfere with our sleep. Some of us have described its effect as paralysing, holding us captive, how it can lead us to self-blame and grieve over our actions; make us feel low in self-esteem and confidence.

 

Some of us have thought we had a predisposition to ruminate about the past, and/or worry about the future, because of our childhood experiences, and learning to feel guilty and self-blame. Having breast cancer also increases our tendency to overthink. These tendencies are even more alive in situations where we feel alone and are in self-isolation. Yes, we have a lot of time to think and overthink, fear the future, and detail what we could have, or should have, done better.

 

Research shows that overthinking the past is one of the biggest predictors of later depression, and worry is closely tied with anxiety. Interestingly, rumination discriminates, it is more prevalent in women than men.

 

A lot of research shows that when we get stuck in cycles of negative thinking we are using up quite a bit of our cognitive resources that would have otherwise been used more efficiently getting stuff done. So, overthinking can slow the brain down, making us inefficient and sluggish. While rumination and worry can be natural responses of the brain, when they get excessive they become interfering, and circumstances which breed uncertainty and lack of control over our immediate situations can enhance our tendency to worry and ruminate. The brain is trying to make sense of what is happening.

 

Managing Overthinking

 

We’ve discussed that if we acknowledge it, give it some space, then it is less likely to dominate us. While this may sound counter-intuitive, as we would immediately want to fight it and push it aside, it can actually make our thoughts less threatening. Some of us have developed a laid back approach, others have found meditation and fresh air helpful. Structured breathing has also helped. Finding resources to be grateful and count blessings were also mentioned as useful strategies.

 

Our brain has an amazing capacity to learn and to adapt because its goal is to help us survive in the most effective manner. When our brains respond, with fear, with overthinking, with sadness and so forth, they are signalling emotions that are critical to our experiences, to our being as humans. We want to be able to embrace them and listen to them, perhaps let go of their controlling forces because then they may not be so loud once they are heard, they may not be so threatening when they are embraced, and we may not need to overthink, when we have accepted.

Uncertainty and Managing It

 

‘Confronting, accepting, even embracing fear, according to research, can lower uncertainty. ‘

A key flash point for uncertainty is once active treatment for primary cancer is finished and we are no longer attending regular appointments which give us momentum in attacking our cancer. We have time to reflect and to worry. 

The enormity of what we’ve experienced sinks in and we wonder what we can do to prevent recurrence or spread. Cancer does not discriminate, it pounces on those who run marathons and eat their five a day just as regularly as it seeks out those who are not as healthy in their diet or as active. 

We realise that our future is outside our control, and this brings feelings of guilt, why me? And what if? If we are living with secondary cancer, as many of our members are, then stability versus progression becomes our uncertainty.

One of the most uncertain times in a breast cancer diagnosis is when waiting for test results. We have all experienced the agony of this, and a few days or weeks can seem a very long time. Once we know, the uncertainty of what’s next reduces and we can get on with whatever treatment our medical teams recommend to us. Some of us like to take control by questioning and researching our treatment plans, seeking the very best way forward for our particular situation.

How can we minimise the effect of uncertainty on our mental wellbeing? 

For some, distraction is the key, keeping busy, with work or other activities. The downside of this is that relaxation may become difficult as intrusive thoughts ruin any attempt at taking a break. For others, peaceful reflection, mindfulness and living in the moment helps. Walking in nature and creative hobbies are absorbing popular pastimes. 

To realise that everything is ok in this moment, right now, works for some, but for others the uncertainty simply overwhelms the present moment. 

Talking about our fears and sharing experiences helps many of us. Confronting, accepting, even embracing fear, according to research, can lower uncertainty. The brain is so powerful, and the more we allow our vulnerability in and think of it as an opportunity rather than a threat, the more we can shield ourselves from the anxiety inducing effects of uncertainty.

For those of us prone to anxiety, the added uncertainty of a breast cancer diagnosis has the potential to be be crippling, but many of us take a pragmatic approach and ‘just get on with it’, not allowing fears related to cancer to add any extra weight. Some of us feel angry and bewildered, and increased anxiety can lead to depression. If we can turn these strong emotions to our advantage we can find a strength and determination to change our lives for the better.

Self-care is an aspect that we embrace in our group, and members report that this attention to our own needs and wants is key to our wellbeing. 

Some of us make a lifestyle change following cancer, as this can help us to feel that we are doing the best we can to look after ourselves. We might eat healthier, exercise more. Some of us throw ourselves into life with renewed zest, with a feeling that we want to make the most of every moment. Some of us have the urge to give back to life, and take on charity projects or volunteer. Some of us seek out help from professionals to improve wellbeing, this could be a counsellor or a cancer support group or course. 

Others talk to friends (although many of us find we don’t get adequate support from those who have not had cancer, and we often stay quiet with family as we want to protect them from the worry) and spend lots of time with loved ones, and still others prefer lots of alone time and make time to relish their solitude.

Calming Strategies for Anxiety

 

‘I took a deep breath and listened to the old brag of my heart. I am, I am, I am.’ Sylvia Plath

Our discussions have focused on strategies that our members have found useful to calm themselves, both in times of stress and generally in the day-to-day. We have confirmed that anxiety may be a major problem following a breast cancer diagnosis.

Naz explained what happens to our brains when we take a moment, sit down and breathe. Our neural networks are highly active when we are busy doing things, occupied with thinking, remembering, attention, decision making and so on. When we stop and ‘do nothing’ our brain is just as active, but it’s our default mode network (DMN) that takes over in this state. 

Its job is to make sense of our experiences, to process what has happened and what it has learned. This is essential for our survival. If our DMN didn’t do this for us, reaching homeostasis, we would be continually overwhelmed. It makes sense that if we encourage our DMN to engage by being still, then we will cope better when we are busy. Meditative breathing induces calm into the body and mind via a two way exchange of relaxation signals. Practicing being calm means we’re better able to calm ourselves at will.

For many, seeking a calm state is part of a general desire to look after ourselves. Calming activities that we’ve shared include movement, activities such as walking, running, yoga, Pilates, cleaning and gardening. 

For those too unwell to move much, then simply getting outside into the fresh air helps. Activities such as reading, watching a film, listening to music – all can be both distracting and calming. 

Occupying the brain whilst resting the body is an essential part of healing. Knitting, crochet, doing jigsaws and colouring are absorbing soothing activities that many women find helpful. Visualisation is seen as a useful tool, particularly as a distraction during treatments such as scans. Many enjoy being in nature and imagining a beautiful place can be very relaxing.

Specific calming exercises recommended by our members include breathing exercises of various kinds (e.g. alternate nostril breathing, box breathing, the three minute breathing space) and some have tried sipping ice old water very slowly which works as a mindful activity. Grounding exercises include things like rubbing our thumbs together to feel the lines, and stopping what we are doing to observe and be mindful of our bodies and our surroundings. Some women find their faith helpful in keeping them calm.

Not everyone finds focusing on the breath helpful. One of the problems with classic meditation is that focusing on breathing leaves the sub-conscious brain free to roam. Following trauma such as breast cancer, this may interrupt our attempts at becoming calm by presenting intrusive troubling thoughts. 

For some women this makes them feel overwhelmingly sad and leads to overthinking and dark 'worst case scenario' thoughts. For this reason some women may choose distracting relaxation over sitting in silence. Playing an instrument, singing and listening to music provide pleasure, and require concentration which focuses the mind and relaxes it too. Some women like calming neutral music (it may not be a good idea to play songs that are associated with memories) but others prefer something heavy and loud which they find dispels their worries much better.

Taking part in activities where we are out and about meeting others can help us to feel more confident, which can assist in alleviating anxiety. Several of us sing in a choir and many belong to groups to practise their hobbies and suggested classes or workshops in improv comedy and laughter yoga.

An exercise in gratitude was mentioned which many women find helpful: listing three things each day we are grateful for, or perhaps keeping a gratitude diary. A good cry is a great stress reliever too.

Menopause: Our experiences and coping; BRiC's Collective Voice

Our most recent Sunday discussion focused on the topic of Menopause, its impact on us and how we deal with its effects. This heated discussion revealed that chemically induced menopause through breast cancer treatment affected those of us who were in our 30s and 40s as well as those of us who’d experienced a natural menopause prior to diagnosis. What was agreed on was that the severity of a chemically induced menopause was much greater than a naturally occurring one. For those of us who’d already experienced menopause there was a chance to be affected by it yet again.

A running concern through our comments revealed the lack of communication from our medical teams about menopausal effects, or how to manage them. We were to research the effects of treatment induced menopause ourselves and seek help on how best to manage the symptoms which are at most times debilitating. There were very few who reassuringly had more manageable symptoms. Many of us were grateful to support groups like BRiC who provided some information on how to address the symptoms.

Menopausal symptoms are challenging and can be debilitating. BRiC members discussed a vast range of symptoms affecting our quality of life: from vaginal atrophy and dryness, lack of libido and sexual dysfunction threatening our ability to maintain intimacy, to brain fog, forgetfulness, joint pain and cramps, as well as fatigue and hair loss, weight gain and let’s not forget hot flushes and insomnia… the list continues.

For many of us such symptoms persist for years post active treatment mainly sustained through endocrine therapies such as Tamoxifen, Anastrozole and Letrozole. The impact of such symptoms adversely affects our workability with many of us reporting that we’ve either had to scale down, take early retirement, or change jobs to less-demanding ones. Our self-esteem is affected and our confidence diminished in the workplace, with some of us reporting we felt dumb and stupid (something also pointed out by family members). A radically induced menopause with full blown symptoms can leave us emotionally and physically shattered and increase our vulnerability to anxiety and depression.

We discussed the possibility of supplements aiding in the management of menopause, though these were organic developments not necessarily prescribed by our medical teams. Some of us mentioned Vitamin D and Calcium with Magnesium, as well as cod liver oil. Any supplements taken should be discussed with our medical teams we noted. Some of us mentioned that acupuncture has helped and many emphasised the positive effects of exercise and diet, though shedding weight even with a balanced diet and much exercise was a challenge for many. The benefits of exercise are long documented and research from BRiC shows that challenging our brains in adaptive ways can help with brain fog improving cognitive health. With research documenting a causal role for cognitive function in protecting against anxiety and depression, this self-management tool can only empower us with the control that cancer has so cruelly taken away.

Unfortunately, unlike cancer-free women, HRT is NOT an option for us as it can fuel recurrence and increase our chances of secondary breast cancer especially if our original diagnosis was hormone related. In fact some of us wondered if our diagnosis was fuelled by HRT in the first place. In addition, most women who are not affected by breast cancer do not know that HRT is NOT an option for us, so some comments on how HRT can help us may come across as insensitive. The fact is that there are no simple solutions for us.

No one symptom of menopause affects us in isolation, the symptoms are very much linked providing a difficult environment to function healthily at best of times. Our emotional, sexual and cognitive health are all interlinked as our bodies work in harmony. A collective threat to our basic functioning is damaging and our members' experiences clearly demonstrates the emotional and physical pain they endure. This calls for an urgent need for measures to systematically address menopausal effects, longer term. A link suggested by one of our admins: Dr Caroline Humber, provides some useful information as a starting point, but more needs to be done: https://flipbooks.leedsth.nhs.uk/LN001794.pdf

#breastcancer

#secondarybreastcancer

#wellbeing

#menopause

#mentalhealth

#resilience

#cognitivefunctions

What advice would you give to someone newly diagnosed with breast cancer? BRiC's Collective Voice

What advice would you give to someone newly diagnosed with breast cancer?

When we are diagnosed we go through a trauma and our brains are emotionally overwhelmed. We asked our members what would have helped us at this emotional time when we are feeling vulnerable, tearful, and scared.

For some of us, we would have liked to know “you will get through this”, that the treatment is “doable” but that the treatment wasn’t something we could “sail through”. And that those who offer toxic positivity “Stay strong, you’ll beat this” may drive us crackers. Some definitely learnt the hard way, trying to be “super woman” and “push through” while caring for everyone else as they always did, and would now offer advice of “take it one day at a time” and, a recurring theme, “listen to your body”, alongside encouraging women to take all the help offered by friends and family. A few members said “knowledge is power” which related to us gleaning as much information as we could about our disease and its treatment. However we acknowledged that it was easy to be overwhelmed with too much information and that we can all handle it at slightly different rates. Some of us did feel we had not been given enough information at the start of our treatment plan, that knowing the long term side effects more thoroughly could well have affected our treatment choice. This also ties in with, as one member put it, “be firm with your medical team, you are the expert on YOU”. Ask for copies of your medical reports if you are like me and need to know everything” And take time to consider choices you are given about your treatment, take a 15 minute walk round the car park if you need to in order to help clear your mind. Also, celebrate the wins: “if you get out of bed and stagger outside for a walk on some days that’s bloody amazing”.

From an emotional level, we needed to be reminded to look after our stress levels, that “this too will pass” even if it takes a while to feel emotionally stronger. We should give our emotions the attention they deserve, that this is “your story”, that it was ok to not be super strong about this, that it was wise and even healthy to acknowledge our feelings. Some of us felt that some warning about the emotional rollercoaster that may happen afterwards would have been good, that we may push through emotionally to get through the treatment, but that we may crash down when it has finished, that even though our friends and family think it is all over when treatment has finished, it isn’t over for us. And that we may need to seek help at this point and acknowledge our struggle, and ask for support from a professional, many of us didn’t know this was available.

For self care, we needed to know how to administer some self care! That breast cancer is a disease, not a cold. Members suggested treating ourselves with kindness and compassion, and also seeking out support groups such as ours, (Building Resilience In Breast Cancer private group or BRiC) to find women who would just “get it” and could provide some answers. One member said groups like BRiC gave her hope as there are members here who talk about being 5, 10 or 15 years post diagnosis and that helps us see beyond the immediate danger we feel. One member offered some practical self care advice that she would have liked: “You will laugh again. Eat well. Rest. Treat yourself. Take time in nature. Put on your best clothes and makeup - it will make you feel good” Another member said: “It’s ok to feel everything you feel, don’t bottle it up. This is crap, but if you stay open, your life will open up and change in ways that you would never have thought possible”.

Things that get us excited and put breast cancer on the back burner: BRiC's Collective Voice

A recent Sunday discussion of ours focused on “Some of the things that get us excited and put breast cancer on the back burner. Have you found something that reignites your joie de vivre?”

Naz started off by saying that she has used work as a distraction to her breast cancer, but that writing grants, publishing papers and supporting her students mainly gives her a “sense of happiness”

Other members could relate to Naz on the issue of work, it distracts, gives them some normality, and by stretching themselves, gives them a sense of accomplishment too. Also, “being around my colleagues was very helpful to me, they were great”. One member is a tattooist, and, once she was allowed to work again post covid restrictions, has found a real buzz about her work, enjoying the creative process and doing what she loves.

A long term project has also helped one member, a project to convert a horsebox into accommodation. The project will allow her and her husband to travel, and afford them adventures, and make memories. This “happy project” gives a sense of accomplishment too, with a long term goal.

Creativity has been a great go-to for many of us, we have taken up art, written poetry, made jewelry, miniature flowers and renovated dolls houses. Activities such as knitting or crochet have proven links with mindfulness and improving depression so it is no surprise that this sort of creative process is something we reach for in various guises. Cancer has helped us push the boundaries of our abilities, and encouraged us to experiment and learn different techniques and skills - given one member a “self confidence I never had before”. We feel that sense of accomplishment again, and are surprised and pleased by it as many of these activities were initially taken up to distract us from our dark thoughts when we were on active treatment. We have found we want to carry on with them because of the joy they give us, in the process and the end result.

Being outside in nature was another common theme for us, how being outside helps us still our minds, looking at the space around us, the countryside, the colours, the expanse of space. Nature, animals, the night sky, camping and being with friends around an open fire makes us happy, helps us feel calm and chases away anxiety while we are in the moment. It allows time to reflect and get motivated by our own thoughts and theories.

We exercise too, if we are able to within our physical limitations: yoga, horse riding, dressage, running, long hikes, exercise classes at the gym. Setting an exercise goal, and hitting it gives us a natural endorphin high, and keeps us challenging ourselves. Or just having a dance to our favourite playlist!

For some members, they are still searching for something that “clicks”. Reading a good book can provide escapism, but if our minds are wandering then we may not remember what we read. Sewing and yoga can give some temporary distraction but may not fully “excite or engage”. Our concentration and focus may have gone and anxiety has replaced it, we may struggle to look forward to events that gave us a joie de vivre before cancer, and that can block us from those activities that may have excited us before.

However, we should be mindful of not using whatever gives us joy and excitement to help us avoid thinking about our breast cancer. It is healthier for our minds to not suppress our emotions, but give them the attention they deserve and when they deserve it. We are aware of pushing cancer to one side with the things we enjoy doing, but this can only be temporary and the darkness can return. We have to learn to live with the darkness we may sometimes fear and learn what we can do to excite us, what makes us smile and the world seem a little brighter.