Loneliness

 

“Cancer is a lonely place to be”

In our discussion this week, we talked about our experiences of loneliness. Naz told us that loneliness can be a long-lasting effect of a cancer diagnosis and can increase the chance of developing depression. So why do we feel so lonely, even among our family and friends?

We found that whilst some of us have experienced loneliness lifelong, for many of us the experience of feeling lonely after diagnosis of breast cancer is new. We find that loneliness continues even years after developing cancer. We find that there is a lack of connection between ourselves and our friends and family, even in the most supportive of our relationship groups. Having a serious illness such as cancer changes our perspective on life with a real sense of fragility and a loss of our own sense of self in a way that cannot be fully understood by others who are not directly affected. We have all lost friends who did not - or could not - support us, which was hurtful. This adds to the feelings of being alone. We feel apart from those around us.

Many of us describe that we prefer to spend time in our own company and that this makes us feel “lonely - but safe”. We don’t feel the need to put a smile on when we feel so alone, even in company.

For some, the physical reality of breast cancer exacerbates the feelings of loneliness. Some have retired from jobs we enjoyed and miss that purpose and connection with our colleagues. Symptoms such as fatigue mean some of us cannot participate in activities we used to love and this makes us sad - missing out spending time with others makes us lonely.

Almost all of us find that being in the company of others who have been diagnosed with cancer allows us to talk honestly about our feelings. There is a sense of connection and common experience in spending time together - either in a local support group or in a virtual group. Nearly all of us agree that our mutual support eased loneliness and many of us have found firm friends in this way - people who “just get it”.

In BRiC,  we realise we are no longer alone - we hold hands together.

The Lonely Poem

We didn't know it was possible to feel so alone and yet be surrounded by love and people.'

The collective voice of BRiC: the loneliness of cancer. In free verse, in our own words, from one of our recent discussions.

A silent holding of hands

A listening ear

Is that too much to ask for?

They don’t want us to talk about our cancer

Our friends fall away

They block us out

Put distance between us

So much time alone at home,  recovering from our treatment, not just alone, but lonely

We see our scars every day

But we can’t talk about it.

Others don’t get it, they don’t get us

They change the subject

‘But you’re ok now, aren’t you?’ they say

We’ve given up trying to explain

Our emotions belittled because they feel uncomfortable

We hide our feelings to protect our loved ones

We didn’t know it was possible to feel so alone and yet be surrounded by love and people

We feel like ghosts

Not able to be our real selves

We hold back, hold it in, hold on

Deny who we are 

Our cancer is part of us now

We don’t really know who we are anymore

It’s the whole effort of figuring it out, not burdening people with it,

Yet lacking that connection because we can’t explain it

Sometimes we self-impose isolation because we don’t feel 

Important enough to take up other people’s time

And we find it hard to accept support

A lonely place to be, especially at night when the pain is bad

And our minds are working overtime

Are we responsible for our own loneliness?

We’re not OK

We want to be allowed to not be OK

We want to be acknowledged

But they are bored of our journey, living with the legacy

And no-one understands this inbuilt fear

The loneliness of our thoughts

So busy fearing the future that we aren’t living in the present

We’ve learned it’s ours to carry alone,

We withdraw into our little lonely bubble 

Our loneliness a constant companion

Alongside isolation, fatigue, boredom, silence, regret

Where is our joy?

Where is our excitement?

We carry this huge secret,

We want to shout out, ‘if only they know what’s going on inside me!’

We are scared, we are alone, we are lonely in this new world

We walk alone.

Yet there are a few of us, who have limited time left

Who have never felt less alone.  We are blessed to have devoted family 

And our happiness may seem inappropriate

Are we in denial? Or just acknowledging our real feelings, 

Rather than the emotions the situation would seem to demand?

Does it even matter?

For others this is a terrible time,

Thinking about death, we try to be part of the crowd, the living,

But we are sad and lonely there. 

We cling to each other, our cancer friends,

The ones who’ve been there, the ones who understand

Sharing our loneliness through our honesty

And when we reach out to those who understand, we build a bridge

And for a time we can feel less alone

As Joseph Conrad said, ‘We live as we dream, alone.’ 

Alone at night, afraid of the future,

But with hope 

We’re finding our way now

And other special people become our friends

In our parallel world

Our virtual safe space

To be whoever we want to be, and know we are not quite so alone

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.

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.