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

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.

Weekly Discussion Summary ~ Fatigue

“Fatigue, we agreed, is not the same as being tired.”

In this week’s discussion we explored fatigue, a common and debilitating side-effect of treatments for primary and secondary breast cancer.  

Fatigue, we agreed, is not the same as being tired. It’s a relentless feeling of living in a barrel of treacle, typified by feelings of exhaustion and burnout - physical and mental. Fatigue tells us we are muddling through on empty, our resources depleted, our energy all used up. Sleep and rest does not replenish us. Fatigue may be sudden, constant, or come in waves. 

Coping with fatigue is difficult. Many of us find it hard to acknowledge that we can no longer do as much.  For some fatigue is mild, for others it’s severe. Fatigue hits some of us now and again and is a minor irritation. It can stop others from working, socialising and they feel constantly unwell under its weight.

Insomnia seems a common feature of fatigue. As we become overtired, we worry about not sleeping as we lie awake. We worry that we won’t be able to work, we worry that our families will see us as shirkers, we worry that friends will get fed up with us for turning down invitations or leaving the party early. 

Many of us are learning to pace ourselves. We plan fewer activities on a daily basis and schedule in times for rest. In a world where being busy is highly prized, it can be hard to slow down to our own pace. Working full time can mean me time, social time and family time is squeezed as it takes every ounce of our energy to hold down our jobs, and there’s nothing left for anything else. We don’t do as much as we used to, as much as we would like, leading to feelings of guilt and a loss of self-esteem. 

Many of us noticed that the fatigue caused by surgery, and/or radiotherapy and/or chemotherapy seems to lessen over time. But after active treatment has ended, menopausal symptoms can feed into our exhaustion, either from early or treatment-related menopause, or, from taking hormonal treatment. The effects can be long lasting. 

Those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be an continuous problem requiring specialist support.

Many of us have experienced the ‘boom and bust’ cycle where we feel great and do loads, only to crash afterwards and be forced to take time out. We suddenly feel totally wiped out and there’s nothing we can do except stop and rest.  

The spoon theory - there’s plenty of information on this on the internet - is useful, but although it helps us understand and validate our symptoms and gives us some language with which to articulate it for others, we still feel frustrated by the times when we just can’t push through, keep going, have a little nap and then feel fine again. 

Many of us described fatigue as a tiredness that is not relieved by a good night’s sleep. It can be a weariness of body but also a heaviness of mind. This, we wondered, may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This, coupled with the fear and vulnerability that accompanies a cancer diagnosis, decreases our ability to bounce back from low mood. Our brain is preoccupied with the mental trauma and cannot lend as big a hand to our physical recovery as we might like. Keeping our brains active, even when we are forced to rest, may be helpful here. 

Activities can help us to manage fatigue, besides adequate rest, include physical exercise and mental relaxation. Some of us can go to the gym or go for a run, others prefer a gentle stroll in nature or a yoga session. We like to find absorbing things to do to settle and calm our minds, such as reading or creative crafts. Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. There are courses, books and apps to help us understand cycles of fatigue and this understanding can bring an awareness which can be helpful. 

Explaining fatigue to others who expect us to be ok now that our cancer is behind us - and for some of us, many years behind us - feels impossible and some of us have given up trying. We just smile, say we’re fine. We decline a night out because we know that if we go, we’ll feel awful, struggle to stay awake and maybe we won’t make it to work the next day because it will just be too much for us.

We find comfort in knowing that fatigue is a common experience and that many women suffer from it. This helps us to feel that we are not “weak” or “feeble” for needing to slow down.  

Exercise can help, but it needs to be gradually increased, especially for those with severe symptoms. Many of us who are fit and active still describe experiencing fatigue, and others make the effort to exercise, not to improve fatigue but because we know it is good for our health. Showing self -compassion and not beating ourselves up if we can’t exercise can help us to manage the gap between our expectations and our reality. We do our best. Here is where we share our true resilience. We know we are all different and there is no one right way to improve our wellbeing. 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook. 

Useful articles:

https://www.psychologytoday.com/gb/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend

Weekly Discussion Summary ~ Sleep Struggles

"Intrusive thoughts about cancer are magnified in the lonely, dark of the night, and our fears about our health can easily occupy us for hours when we want to be sleeping."

This week we talked about sleep and our struggles to get a good night’s sleep following a diagnosis of primary and secondary breast cancer.

Some of us find it hard to get to sleep, others drop off quickly but wake frequently throughout the night. Some wake in the middle of the night and then cannot get back to sleep again. We've forgotten what it's like to have a good night's sleep. Many of us dread the sound of our alarm clock and feel as though we live in a constant state of exhaustion.

Sound familiar?

We are all aware of the usual tips: going to bed at the same time, turning off screens an hour or so before bed, limiting caffeinated drinks in the evenings and eating dinner early. But, it seems that a solid night’s sleep eludes most of us.

Our struggles with sleep are impacted by many factors: night sweats and shivers wake many (caused by hormone medication and early menopause), pain associated with surgery, lymphoedema and stress, worry, anxiety, fear – associated with our cancer or relating to family or other matters – can all cause insomnia.

Many of us described our worry about functioning on so little sleep.This sets up a vicious circle of being unable to sleep because of our worrying about not being able to sleep! Naz told us that it can be really hard to break out of this cycle as the brain gets used to the habitual patterns of sleep, and learns the pattern as a familiar state which it will try to maintain and replicate.

Pain and discomfort is a common cause of night waking, and trying to get comfortable leads to tossing and turning which is disruptive to getting back to sleep. Cramps and restless legs are a regular problem for some. Pain killers and other medication can cause side effects that interrupt sleep. There are no easy answers.

Nights are the time when we are often most aware of our fear and worry. The tide of all those emotions we have pushed away so well during the day wash over us - stress, worry, anxiety, fear associated with our cancer or relating to family or other matters - can cause insomnia. Intrusive thoughts about cancer are magnified in the lonely dark of the night, and our fears about our health can easily occupy us for hours when we want to be sleeping. Nightmares plague many of us.

Chemotherapy and the anti-sickness and steroid drugs used to manage side-effects cause huge problems for us, preventing us from sleeping and as a result leads to extreme fatigue. We feel completely washed out but unable to sleep due to the buzz of the chemo cocktails.

The most common helpful tip shared was to do breathing exercises, either just before bed or while lying in bed. Ante-natal breathing exercises are great, and a simple 'breathe in relaxation', 'breathe out tension' repetition is a good place to start. Naz explained that the way these practices work is by taking us from the body to the brain, rather than trying to directly calm the brain by other means.

Being active during the day and exercising can help. Many recommended yoga, relaxation and meditation and some of us are keen to try this. Reading before bed can be helpful (and much better than watching tv or surfing the net.) For those who can, a short, early afternoon nap can help to make up for sleep deprivation, and those of us some women who are at work full-time often need to have a restorative nap at weekends.

Naz explained the important role of sleep in our lives and functioning. She reminded us that a bad night’s sleep interferes with cognitive function, especially attention and memory. Our brains are highly active during sleep, and deep sleep performs a restorative function, processing our daily activities and refreshing and stabilising our brains. Sleep is important for retaining memories and for learning new things. She told us that women with a breast cancer diagnosis can take at least half an hour longer to fall asleep than those without, research shows, and their sleep quality is impaired as substantiated by our members. Brain function and structure are affected by the PTSD and anxiety inhibits the brain’s ability to become calm as we try to fall asleep. Our hormones are severely imbalanced, whether due to medication or trauma or both, and our brains remain on high alert and we are fearful, even while we are asleep.

What helps?

A great tip is to start every night anew, putting behind us all our wakeful nights and treating every night as new. Keeping a sleep diary may also help, noting bed times, treatment undergone, food and drink, activity and anxiety levels and so on. Audio books of familiar tales help some, and relaxation scripts, guided meditations or music may be useful too. Herbal remedies help some of us (these must always be checked for safety with a medical team to ensure there is no adverse interaction with prescribed medication.)

Gratitude can also help to induce a relaxed state of mind before sleep – reflecting on three positive things that have happened during the day, things we are thankful for.

If you are a woman living in the UK with a breast cancer diagnosis, and you would like to join our private group, please send us a private message via 
https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Depression

This week our Sunday discussion focused on depression.

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; 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. 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. 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.

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.

Naz explained 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.

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.

This article highlights that we can learn to shake off depression, we can grow through it and beyond it to a place of strength where neither depression nor cancer defines us. This is our resilience.

https://theconversation.com/thriving-after-depression-why-are-scientists-ignoring-good-outcomes-98288?utm_medium=amptwitter&utm_source=twitter

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Wide Awake Club! Insomnia

Our weekly discussion focused on sleep, or lack of it. Insomnia is a faithful partner of anxiety, and so many members reported having that middle of the night active mind that refuses us rest.  Naz told us that insomnia may be harmful to cognitive function, both in the short and long term. A vicious circle is formed as our worry about not sleeping makes the condition worse. 

Our members are women with both primary and secondary breast cancer, and they shared many things which lead them to sleep poorly.  Side effects of treatment and early menopause can hinder sleep:  fatigue is in itself a symptom and a contributor, and hot flushes which wake us up were cited by many as the main issue. Anxiety affects many - fear of recurrence, progression, family and work worries.  Pain is another factor, also cramps, and needing to get up for the toilet frequently.

Some women reported a reduction in the quality of their sleep rather than insomnia, with many sharing the feeling that they sleep very lightly.  The trauma of a breast cancer diagnosis may also affect our subconscious and introduce fear we aren't even aware of, which affects our peace of mind and consequently our ability to sleep well and wake refreshed.

Despite all the complaints about insomnia, our members have many ways of helping themselves to sleep better. Some have asked their GPs for medication, others rely on lavender oil. Some fall asleep to an audiobook or music, others count backwards, meditate, or write down their worries before bed. Breathing and relaxation exercises, and Reiki, may be helpful in calming us. Relief from hot flushes may help better sleep, with women trying acupuncture, medication, and chill pillows. Not drinking caffeine late in the day and cutting out all liquids (yes, even that glass of wine may have to go!) in the evenings may help with the regular trips to the loo. A cool dark quiet well-aired bedroom, a bedtime routine without the phone or tv, a warm bath or a cool shower, all are helpful.

Naz pointed us towards this article, which largely aligns with what our members find useful:

http://healthysleep.med.harvard.edu/healthy/getting/overcoming/tips

Naz's advice to all of us who struggle with sleep is to accept it, work with it, rhyme with it. It will, if we're lucky, come and go. We may feel at a low ebb after we've slept badly, but generally our bodies cope well and can live with it. A visit to the GP would be sensible to address any prolonged period of insomnia.

Post Traumatic Stress Disorder and Breast Cancer (PTSD)

Some evidence* suggests that nearly 80% of women with a breast cancer diagnosis experienced PTSD for at least one year after their diagnosis.

As a network, our experiences are diverse, including women with primary breast cancer, recurrence, and secondary breast cancer. Some of us had finished our active treatment, while some of us were still undergoing treatment for primary and secondary breast cancer. Many of us shared that we experienced insomnia, nightmares, flashbacks and panic attacks. Some of us described our minds going into over-drive and our efforts to manage, as well as feeling disconnected, or, conversely, highly sensitive. Some of us have been diagnosed with depression and/or anxiety.

Naz explained why anxiety, depressive vulnerability and PTSD can be seen as ‘normal’ responses to an ‘abnormal’ set of adverse events and experiences. For instance, depression is a natural response to loss and trauma involving helplessness and despair; anxiety and worry are natural responses to profound, single, or prolonged sets of fearful experiences, particularly when they are beyond our control and involve uncertainty, fuelling our stress responses.

What happens when we are confronted with life threatening events involving significant degrees of uncertainty?

Naz has mentioned us that our amazing brains have evolved to respond in ways that protect us and aid our survival. So, if our goal is to be vigilant to a potential threat awaiting us, the emotional neural networks in our brain will be on high alert, responding continuously, sometimes on over-drive, impacting on stress hormones such as cortisol. Our cognitive systems in principle help us to regulate our emotions, but the emotion - cognition network is highly connected so that in trauma, our cognitive systems take a backseat while the emotional networks keep firing.

Naz has shared that evidence which shows that in anxiety especially, a system called the default mode network, a network supposed to recharge our brains at resting state, and the amygdala, an organ key to experiencing fear, become highly active. This is linked with a prolonged experience of anxiety symptoms well after the event, even for years to come. The brain adapts to this vigilant response and clinical disorders can develop because it is simply too much for the body to take on.

The article* summarises several PTSD symptoms, many of which were experienced by the group including: Emotional numbing, or distancing, because the brain goes in protective mode. Poor concentration. Lapses in attention and poor memory.

Why does this happen?

Naz has explained that our emotional networks prepare us for danger which means our cognitive systems, which have a limited capacity, need to work harder to help us regulate powerful emotions, such as intense fear.

Almost all of us had vivid memories of our diagnosis and experienced a range of powerful emotions such as fear and anxiety which continued during our treatment, for instance, surgery, or emergency admissions during chemotherapy. Some of us described witnessing deeply distressing scenes while in hospital, for instance someone witnessed a heart-attack, as well as other breast cancer patients in various stages of illness or treatment. Our heightened, and sometimes overwhelming feelings continue, not only during active treatment, but following it, for instance, when we have scans, or when new symptoms arise which require investigation. For those of us living with secondary breast cancer, these intense emotions are ongoing and relentless.

Some of us had experienced trauma prior to our diagnosis of cancer, for instance neglect in childhood, or abuse. As horrific and distressing as these experiences are, and especially challenging when they were followed by cancer, it became clear to us that the experience of trauma in cancer presents unique challenges: when we think of trauma as a result of war, abuse, a serious accident or crime, the task facing the individual is to move on in their life after these terrible events and experiences. However, in cancer, the threat to our lives comes from within us. We cannot flee from our selves and our body represents the source of our fear. For many of us, especially, but not solely those of us living with secondary breast cancer, the threat of recurrence and progression of disease is ongoing and very real. It is not something we can put behind us and our survival may depend upon our ability to be vigilant to symptoms which we need to report to our doctors.

Like it or not, we continue to take our cancer forward with us.

Very few of us had been able to share our feelings with our loved ones, partly because we did not want to worry them; because in our gratitude to be alive, we felt we could not share our contradictory feelings, or we felt under pressure to 'move on' and 'put cancer behind us.'

According to Naz it is possible to manage and regulate PTSD, but our brains will not be working with us to eradicate it because of the way they have evolved to ensure our survival. We can, however, build our cognitive strength towards resilience. This can then help us to regulate our responses over time, strengthening connectivity networks in our brains. Naz explained that there is much scope for understanding and managing PTSD through understanding the cognitive functions behind our emotions.

In terms of psychological support, some of us reported positive experiences in terms of accessing psychological support in a timely manner which was flexible enough to meet our needs. However, most of us felt cast adrift and either had limited support or we had found sources of support ourselves. Most of us had not even been told about our potential psychological vulnerabilities.

What can help?

We shared that counselling, CBT, mindfulness, yoga and in some instances, medication, haveall helped. Opportunities to talk and share as a group were invaluable because they both validate and normalize our responses - we could say 'What you too?' and breathe a sigh of relief we are not alone.

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*Brief summary: http://www.breastcancer.org/research-news/many-women-have-ptsd-symptoms-after-dx