BRiC's Collective Voice: Self-perception and well-being; Nov. 14. 2019

“If I can be kind to myself as well as to others then I’m half way to being happy in my own skin.”

Last Sunday we discussed self-image after a breast cancer diagnosis and how our self-perception affects our psychological well-being.

Naz started the discussion by pointing out that how we perceive ourselves has a huge impact on our self-respect.

The scars and ongoing side-effects can have long-lasting effects on how we see ourselves. As breast cancer patients we undergo many serious changes as a result of surgeries and treatments. The physical changes we undergo are many and varied. If we have chemotherapy as part of active treatment we may lose our hair, eyelashes and eyebrows, and nails can also suffer, but even when (if) our hair grows back its texture is often different. Ongoing hormone therapy or chemo-induced menopause can result in thinner hair and other changes such as increased weight, fuzzy brain and feeling like we’ve lost ourselves. Surgery may leave us with one breast or none, or an imbalance between the size of our breasts following lumpectomy, with scarring for all in varying degrees. Some also find they have permanent lymphoedema (a condition where damage to the lymphatic system results in the arm on the affected side being swollen and painful so we need to wear an compression garment on that arm for life). But the most noticeable – and most disliked – change for most of us was weight gain, often accompanied by difficulty in losing weight. And despite it not helping at all with losing weight, comfort eating was an issue for many.

For all of us, the experience of cancer and its treatment has changed us. Many of us said that we don’t like how we look, and some actively dislike looking in a mirror because we feel that we see a stranger looking back at us: “I don’t look like me any more.” Some have found it hard to adjust to and accept our changed shape and have difficulty finding suitable and appropriate clothes for our new body. Some members dislike their bodies without clothes, and because breast cancer leaves us with scars that aren’t visible to others most of the time, they forget what we’ve been through. Even when someone compliments us, we may have difficulty accepting the compliment – one member summed this feeling up succinctly: “even if I do look alright I don’t feel it.”

We are not only concerned about how we see ourselves but also the impact the changes have on our partners. We may feel sad for partners, as dealing with cancer is not what they signed up for. Most have said that partners have been very supportive and still say they love us and find us attractive, but a couple of members related that partners have stated they no longer find them attractive, so physical intimacy in the relationship has suffered.

Being single is particularly difficult after cancer treatment, because of both the physical and emotional changes: “I can’t honestly ever see me dating again.” Our single members may be unsure what kind of reaction a potential partner may have, and even if they’ve had a few dates they may not have the confidence to develop a relationship.

We can be told every second that we are beautiful, but if that’s not what we believe ourselves then nobody else saying it matters. So what have we done to help us improve our self-image?

Some members said that they have come to feel happy with their new body, and work hard to get to know and accept their new bodies. One member commented, “Self-love and self-image is something I’m working really hard on. I wouldn’t be so harsh on anyone else so why do it to myself?”

We have learned that in the grand scheme of things, appearance isn’t everything. While society seems to encourage us to judge and compare ourselves to unachievable body shapes, we need to realise that it’s us who need to change our own opinions of ourselves and reclaim our bodies. One member found a programme on Channel 4 by Kathy Burke very helpful – she is not a classic beauty, but she believes she’s a beautiful person in a beautiful body.

We also shared some practical tips.

Some members have taken up fitness activities since diagnosis and work hard at maintaining their new body. One member found it very hard at first but perservered and has made new friends of all shapes and sizes. In the words of one member, “I work hard at maintaining my new body in order to like something about myself”.

Those of us who have pets find them a great source of solace as they still love us, however battered we are. Dogs in particular mean we have to get exercise, which helps with the difficulty we may have losing weight. Some members swim, and one member even plays Pokémon GO in order to get out and walk!

How we dress can also been positive. Nice underwear can help us to feel better about ourselves, but although it can be a challenge finding something nice, particularly for those who have had mastectomies or are now odd sizes, finding some reasonably priced sets has boosted our morale.

For others, in order to get to feel comfortable with our “foob” (a contraction of “fake boob”) or mastectomy scars we have chosen to have a tattoo, and this has been a positive choice as it has allowed us to take control. Some have had other smaller tattoos elsewhere, and all who have had tattoos have been pleased with them.

The idea of control continued for those members who have actively chosen to “go flat” and not have reconstruction, either after a double mastectomy or after getting a second mastectomy. They have found that being able to make the choice has helped them to accept it, and helped with their psychological wellbeing.

“Learning to accept the ‘new you’ both physically and emotionally can be very difficult, but it can improve our general wellbeing and eventually bring about contentment and happiness.”

If you are a woman in the UK who has had a breast cancer diagnosis and would like to join our private group, please send us a private message or leave your name in a comment and we will be in touch.

BRiC's Collective Voice: Coping with the (literally) darker days; Nov 4. 2019

‘Focussing on and finding joy in the changing seasons’

Our discussion looked at the impact of the shorter and darker days on mental health and wellbeing.

Naz started this discussion by describing how going through a traumatic experience that impacts upon hope and the future can magnify the heavy and dark side of the dark and short days, and she was curious about how we coped with the autumnal changes and the impact that they can have on our emotional well-being.

Many of us agreed that this time of year can affect how we feel. The changing season can cause a general reduction in energy, lowering of mood, or even depression. Getting up and going to work in the dark, having to deal with the cold and damp and, for some of us, the added trauma of going through active treatment, can have a negative impact on us. We spoke about the lethargy that we can feel at the darkness, and the pain that the cold and damp can cause, making mobility difficult. Some also mentioned that this time of year coincides with the anniversary of diagnosis – a time that many members already find difficult.

Several practical solutions were suggested, with getting outside for a walk in the daylight and making the most of the fresh air being the most popular suggestion. Some members who work in an indoor environment found it particularly useful to arrange a lunchtime walk with colleagues so they had the chance to be exposed to daylight. Others use Lumie or SAD lamps to support their well-being, with differing success rates. Those members with dogs were grateful that they were forced to go outside whatever the weather, and found that once wrapped up against the elements they actually enjoyed getting out there in the weather.

As the discussion progressed, some other ways that help us cope with the changes to the season were shared. Many of us found that we embraced the shorter days and the darkness, making our homes feel cosy with sparkly lights and candles, and we enjoyed being able to snuggle under sofa blankets and have an excuse to watch TV, read or complete craft activities, accompanied by our favourite warming comfort food and hot drinks.

Focusing on and finding joy in the changing seasons and the different celebrations such as Christmas was also discussed and the way in which the ‘lights and sparkle of christmas’ helped to brighten moods, maybe because it gave notice that the days would start to get longer soon and the seasons were on the turn again.

Maybe the answer is reframing what we see, one member spoke about ‘falling in love’ with autumn and seeing the changes as positive, the dark nights drawing in giving excuses to hibernate and feel warm and content rather than sad. Another member shared that they had a picture that had changed the way they thought about grey skies, seeing them as silver instead of grey and being able to ‘see and feel the light behind them’.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comments or send us a private message.

Tamsin Sargeant and Vicky Wilkes: Stories of Resilience After Breast Cancer

"Some stories don't end with the words 'they all lived happily ever after.' But we go on. Even when we think we can't go on, we go on. We go on slowly. We go on quietly. And we never give up."

#BreastCancerAwarenessMonth ends today, but at BRiC, our cutting edge research helps us continue to find and practice ways by which we can promote resilience to the best of our abilities. As Vicky Wilkes our late deputy head said: "If I cannot fix it, I will carry it".

The amazing Vicky and Tamsin, united in their voice, share words on why #resilience is important in both primary and secondary breast cancer.

#notjustoneday
#metastaticbreastcancer
#secondarybreastcancer

https://www.huffingtonpost.co.uk/tamsin-sargeant/stories-of-resilience-after-breast-cancer_b_9997488.html?ncid=engmodushpmg00000003&fbclid=IwAR2_dgyhP2QfD0mu1cwYymentMzJBvQbZG3NLuV9XL8QVghBXtult4R6u2U

Tamsin Sargeant: "We need to keep talking about Secondary Breast Cancer"

“We Need To Keep Talking About Secondary Breast Cancer”

“Women with secondary breast cancer were – generally speaking – once women with primary breast cancer. Ignoring this simple truth does a disservice to us all. Primary and secondary breast cancer are not separate entities, they exist on a continuum, and a better understanding of both our common and specialised psychological needs fosters greater mutual support and advocacy for improved treatments. Women with secondary breast cancer need women with primary breast cancer to support and advocate for them; women with primary breast cancer can learn from other women with secondary breast cancer. We need to keep talking about secondary breast cancer.”

Pleased to share this brilliant piece by BRiC’s former Deputy Head Tamsin Sargeant on why we need to keep talking about Secondary Breast Cancer.

https://www.huffingtonpost.co.uk/entry/secondary-breast-cancer_uk_5c50a804e4b07818afbea4da?fbclid=IwAR1-SuW9k96GcmmojH4y23qHEdErmkpA90Jn4hKunI3dxG5XRY2r63nENLk&guccounter=1&guce_referrer=aHR0cHM6Ly9sLmZhY2Vib29rLmNvbS8&guce_referrer_sig=AQAAAAUaArmFxz3JnuMt_I96qf_rDYSvgUWedJZoSt1-igGF4cN0qhmnEuXpf4vIuupGEcrXgU--wyeE7ngeNa6GIhhsHS5qV_CknCfukCawfNeu9o4efnueZLoxGt2Yxi7SgurGhr079NtjmiIFxKtxMB5Eh6RTonCIheymQYtGo2fC

#notjustoneday

#secondarybreastcancer

#breastcancerawarenessmonth
#metastaticbreastcancer

BRiC's Collective Voice: Our Coping Strategies, Oct. 28. 2019

'It’s often said that it’s the little things that matter, and never is this more true than when we’re dealing with a great big uncontrollable thing like breast cancer.'

This week our discussion focussed on coping strategies: what has worked well for us in dealing with our breast cancer diagnosis.

Our members described many different ways of coping, a dominant theme being avoidance and distraction. By keeping busy, with work, families, activities, we remain outside ourselves, we don’t have to face our fears or process our trauma. We don’t want to see what is going on inside our heads, our hearts, and so we keep our brains occupied at all times, with doing, planning, worrying. If we never stop, the fear cannot harm us. Busyness becomes our default mode of operation, our way of maintaining normality after our breast cancer diagnosis throws us off our planned path and we constantly strive to go back to how and who we were before. Many of us realise that this just isn’t possible, and it’s an uncomfortable truth.

For those of us used to being very active and busy, the fatigue that comes with our breast cancer can be hugely frustrating. We may try to overcome it by keeping going until we crash, and develop an unhealthy pattern of start/stop. We are trying to fix what we perceive as a problem instead of addressing our fatigue by adapting to our new capability. If we can no longer do everything we used to do before, can we do a gentler version, find a different way. Flexibility is key to coping well.

Hiding our emotions away for long periods of time can lead to an unhealthy mental state, with pent up feelings likely to come to the fore at inappropriate moments. How much better for our wellbeing to acknowledge and where possible, accept. We can allow ourselves to do nothing, to cry, to feel. It’s simple, but it’s not easy.

As one member wrote, ‘I definitely need to press the pause button, for me and the family at times. It’s always worth it.’

Many of our members pride themselves on being organised, as this helps with anxiety. Some of us like to imagine the worst case scenario for a situation and plan for that, knowing that we are prepared for anything can be helpful in managing worries about the future. Antidepressants have their place in helping us to cope. Humour is a great way of dispelling fear too, but a few of us have found it difficult to access after diagnosis, and it may return a darker shade! Some of us are seeking better balance in our lives, planning in downtime, alone time, me time. Scheduling blocks of free time without external commitment can be very therapeutic, giving us choices in how to spend that time: sleeping, walking, reading, whatever we want.

When we feel overwhelmed, breaking things down into small chunks can be very helpful, along with slowing down the pace of activity and doing one thing at a time, taking one day at a time. Building in small treats - our favourite cake, a candlelit bath, a short walk - when the going gets really tough, is priceless. It’s often said that it’s the little things that matter, and never is this more true than when we’re dealing with a great big uncontrollable thing like breast cancer. Particularly secondary breast cancer, when treatment is ongoing and relentless and we have huge horrible tasks to contend with such as telling our loved ones about our prognosis. Extreme self-care becomes a priority.

Journaling has helped many of us, we find that writing down how we are feeling brings clarity. Others find meditation and mindfulness invaluable. Others have used selfie photos to remind themselves of how far they have come. Familiar podcasts can be soothing and provide focus when the mind is racing out of control. Breathing exercises can help us to be in the moment and find calm during times of stress. Exercise and fresh air can be of huge benefit also. Pets can be a huge source of love and comfort.

Lots of these pleasurable leisure activities can be seen as distractions in the same way as working too hard, and it’s clear we need to be careful that we are not continuing to make excuses in order to avoid our feelings. We may become accustomed to the numbness and take comfort in it. In order to actually move on perhaps we need to actively change our internal dialogue. Mindfulness can help with this: observing what is happening in the body and in the mind and around us in this moment, not trying to make anything different, not labelling or judging, just noticing and letting each moment go as it passes. This practice can lead to an inner calm and peace which can be transformational.

Some of us have had counselling which has helped to put things in perspective. Talking through our experiences can help acceptance. Others are blessed with supportive friends and family and like to talk things through regularly. Some of us are struggling with our relationships and find we hold our feelings inside to protect others. This can be where private groups like BRiC come into their own, as everyone is in the same boat and ‘gets it’ and we encourage sharing the bare raw truth.

Moving from coping to thriving may be all about self-care and self-compassion. So many of us have grown up looking after everyone around us and leaving our own needs until last, so that often they remain unmet. We must learn to put ourselves first, and that means searching within for the strength to find the answers. With a little help from our friends, of course.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please leave your name in the comments or send us a private message.

BRiC's Collective Voice: Value of Mutual Support; Oct. 22, 2019

'We have had the same thought, fear or shared joy in the middle of the night as well.'

Our discussion this week explored the value of mutual support and friendship, and what has it meant to our members.

Naz described briefly how social support has been one of the biggest predictors of psychological well-being in the research literature. The benefits that this brings with it include protection against depression and loneliness, as well as boosting self-esteem and self-compassion.

The discussion highlighted a variety of support, differentiating between family, friends and online support. Many of us protect ourselves, and our families and friends, from the reality and impact that this disease has on our bodies both physically and emotionally. Many described the loss of confidence, feeling and looking physically different as well as the long-term impact that chemotherapy and other treatments can have on us.

Many described finding friends, and in some cases family members, disappearing from our lives, and whilst it was recognised how difficult it is to be able to be supportive, it was generally felt that there was an expectation that family and friends did not understand the impact that breast cancer can have. Many shared that after a few months of finishing 'active' treatment there is an expectation that we should be 'over' it and getting on with life without fear and worry. Many found that the lack of understanding led us to be less vocal about the impact the illness has had on us, and that has in turn led us to feel isolated.

There were a couple of members who identified that they were lucky enough to have a friend who was there for them regardless, and that this acceptance and willingness to try to understand was invaluable to them.

Online groups were seen as a massive source of virtual support. Being able to share thoughts and feelings, being able to ask if something is 'right' or should be checked out by professionals, and just having a safe place to be able to say how we are feeling, without the worry or need to protect others, was seen as invaluable.

Being able to write what the fears are in black and white doesn't make them less scary, but the responses from other members helps to stem the feelings of isolation because we understand, we have been there, we have had the same thought, fear or shared joy in the middle of the night as well.

The benefits of face to face meet ups was also thought to be positive. The value of meeting in person cannot be over-estimated. A real hug as opposed to a virtual one means so much, and online friendships tend to deepen when we've met in the flesh.

Being able to give and receive support is essential and being able to just 'be', to be accepted and not be the odd one out because of breast cancer.

Some members described that they did not feel that they had the right to be a part of these groups because they didn't have chemo or mastectomy, but it soon became clear within the discussion that everyone is valued equally. Whilst our experiences are all individual, the one thing we have all had in common is being told we have Breast Cancer. There is no light or lucky form of cancer.

If you are a woman living in the UK with a breast cancer diagnosis, and you would like to join our private group, please leave your name in the comments or send us a private message.

BRiC's Collective Voice: Lack of Psychological Care, Oct. 10; 2019

“Living with #secondarybreastcancer as a “chronic illness” which brings even more stress and emotional trauma, makes it difficult to move on and “get over it”. We are left in a constant state of anxiety and stress.”

Thank you to Susan Quirke, One of our new admins, who summarised our Sunday discussion this week.

For our discussion we focussed on (the lack of) psychological care after diagnosis. Naz told us that psychological well-being and physical well-being go hand in hand, they promote each other. 

Unfortunately for us women with breast cancer, there was a big consensus that psychological care when we most needed it was not available.

Our members mentioned the benefit of online support groups. Many members mentioned that groups like BRiC are their lifeline. They can feel like they aren’t alone and members support each other. No matter what part of the country we are in we feel supported. Some areas don’t have any counselling services so groups like BRiC become extremely important to help us not feel isolated.

Lack of support after treatment meant that many members felt that once treatment for primary breast cancer had ended, everyone expected them to be happy, move on and forget about cancer. And once treatment ended there was no follow up or support from medical staff. Our members with secondary breast cancer, where treatment and monitoring continues for as long as it remains effective, felt the lack of ongoing support particularly keenly.

Another source of depression and anxiety came from "scanxiety" (scan anxiety) - the terror of the cancer coming back, or for those with secondary breast cancer the fear of progression, and people around us not understanding how every scan sets us off in blind panic and fear. There is a feeling of loneliness and isolation as we feel we can’t express our fears to others outside these groups.

People we love are important to us. We feel guilt at not being able to just move on and “get over cancer”, if we have been through treatment for primaries, and those of us with secondaries feel guilty about the worry we are causing our loved ones. We feel like we have to put on a brave face and that we can’t truly express our worries and fears in case they get upset, which leads to feelings of isolation.

We actively seek out help. Many members feel like we have to seek out help, that no one offered us any counselling or asked us how we were coping.

There was a real feeling that others say, or imply, "you are cured, now move on with your life."

Moving on courses are helpful. Many members have been to a moving on course through Breast Cancer Now or other places like Maggies, Macmillan, The Haven etc. Many were referred by their breast care nurse.

However there are often long waiting times for these courses. Some members pointed out that these courses are always on in the day time and with work and family commitments they can’t make the courses.

Counselling helps. Some members have seen their local hospice psychiatrist and some have been referred by their GP for counselling and CBT which they have found helpful, but also that there aren’t enough sessions. However, we are usually offered only four to six sessions and then we are supposed to move on with our lives.

Some members said they weren’t honest about their mental health and would pretend they were fine because they felt that’s what everyone wanted to hear. Others admitted to self-medicating with alcohol to numb the trauma and fear. Others felt disappointed in themselves that they couldn’t just move on and get over it, like they had let everyone down as they weren’t behaving how others expected them to. There was a feeling of shock that as soon as treatment is finished you loose all support and the expectation is that you should be delighted to be over treatment and that wasn’t how many members felt. They felt lost after treatment and anxious and very unsupported.

Some members reported that they were offered complementary therapies such as Reiki and massage and they found this helpful in feeling calmer and more mindful. Nature and distraction techniques were also mentioned, that being in nature really helps to quieten the mind and put life’s worries in perspective. Our members have a new appreciation for immersing themselves in the outdoors. Some members use distraction techniques to avoid thinking about their cancer experiences and try to keep themselves immensely busy to avoid any deep thoughts about cancer sneaking in, though it was acknowledged that this may not be productive in the long run.

Some members found that it was too painful to relive their cancer experiences and didn’t want to talk about it or seek out counselling they didn’t want to go through what they had experienced again.

Many felt that exercise helped with their moods and had become more aware of this and made sure to make time for exercise as they could feel the difference mentally.

Financial insecurity was an issue. A number of people have commented that having less money means more stress due to not being able to work or working less hours. So as well as having to worry about the cancer coming back and feeling trauma from everything we go through they also have to worry about paying bills and trying to manage to keep everything going.

Though it is possible to get NHS support for family members in terms of counselling, the majority of us felt this seemed to be unusual as we struggle to find support.

Some members expressed the thought that Private get more support versus the NHS. That it’s easier to access a mental health professional and on the NHS the waiting lists are prohibitive.

Timescale to recovery was a controversial issue. Some members have expressed that they have more anxiety three years later then during treatment but now it’s unacceptable and they cannot express their fears. They felt like there is a timescale on recovery that we aren’t allowed to still feel worried or concerned as time moves on.

Some members have gone to their GP as they feel suicidal and have been put on antidepressants. There is a real feeling that there is pressure to put on a “happy face” around their children to not show any fear or anxiety as they don't want their negativity affect their children’s lives any further.

Doctors’ attitudes are key. There was also a mention that when doctors reel off facts and figures about survival rates and so on, it actually make us feel even more anxious and worried, that they don’t have the ability to feel empathy and speak in a more considered and thoughtful way.

If you are a woman with a breast cancer diagnosis and would like to join our private psychoeducational support group please messages us here and we will get back to you.