Monday, 11 November 2019

Vicky Wilkes, late Deputy Head of BRiC, and founder of Panning for Gold

Be the first to comment!

"So when you do go outside and look at those stars in our universe, take a deep breath, appreciate your existence and that you are able to do these things."

A special message to all of us women with breast cancer, from our amazing deputy head, Vicky Wilkes, whom we continue to miss and love dearly. Key words from a brilliant friend, nurturing mother, dedicated colleague, and loving wife.

This was Vicky's last post, and she was keen for it to be published widely. Thank you to Dave, her amazing husband for sharing with us.

"We all knew this was coming, didn't we? When I would be told that the end is nigh. But it is such a shock when it actually happens and they can't seem to keep your mojo up. I have been strong through my ? years of living with secondary breast cancer but it is the hardest thing I have ever had to deal with mentally and physically and this is not going to get better and I feel that the time I will fall off my perch is coming soon as my ? isn't coping.

I don't think any of us really accept our mortality, and I certainly wasn't expecting to in my early 30s then again on my early 40s, but it is what it is and I felt it arrogant to ever have said 'why me?'

My relationship with cancer started in 2006 at age 31, but it was when I reached 40 that it got terribly serious and I knew my time here would be shorter than expected.

I had imagined growing old surrounded by my family, seeing my children through their school years, into adulthood, getting married and having their own children. It hurts so much to know I won't get to see these milestones but more importantly that I won't be here for them when they deserve to have their mum there on the special days of their lives. How can I leave these two children without a mum?

Each day is a gift and the only moment any of us really have is now. I don't want to go, I don't want to leave my family and friends, but I have no choice, I have done my best but it's out of my hands.

The one, worst, horrible, bad thing about this dying lark is that I have hated causing sadness. I really hope my children can be resilient and bounce back to be the amazing adults I think they can be.

I look at life through different eyes. I wish people would stop sweating the small stuff and appreciate life and how truly amazing it is. It's ok to find something annoying but then you need to quickly get over it and be thankful it's a minor issue.

As the great Stephen Hawking said.. "Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.”

So when you do go outside and look at those stars in our universe, take a deep breath, appreciate your existence and that you are able to do these things.

Think about those things that happen to you, that you put a lot of weight into, but which are sleep, bad hair day, don't like how you look, got nothing to wear, house is a mess...just let all that shit go! My body is wrecked, my mind is wrecked, but I see even those things as pretty insignificant because what I really cared about was how long I had left here, would I see my next birthday, my children's birthdays, Christmas.... I needed to keep going, I needed another day with my family and friends and then I needed another and then another, I needed to be here.

Appreciate your body, embrace it but don't obsess over it and look after your mind, as that will look after you. Be grateful for the days when you are not dealing with anything serious and yes it's annoying but it will go away.

Stop the stress of buying stuff you don't need, with money you don't have, to impress people you don't like!

I learned from everyone who joined me on this precious ride that is life. I have laughed and cried with you and we are all part of each others lives which has helped shape the people we are! Thank you, all of you family, friends, nurses and doctors who did their best for me.

You've given me much support and pleasure. I'm glad to have known some of you for many years and just wish I had more time with others of you I've not known for so long.

For goodness sake people, enjoy life, take risks, be kind always, love, be curious about everything, look at the diversity of the world around's incredible, travel, be a badass, smile, be gentle and forgive whenever you can.

Thank you all, now go and toast life with more alcohol than is good for you on this occasion, laugh, smile and have an amazing time.

Much love and thanks!
Peace out! X"

Weekly Discussion Summary ~ September 6, 2019, Coping with grief and loss

Be the first to comment!

This week, our Sunday discussion focused on our personal experiences of grief and loss. Our members dug deep and gave us some heartbreaking personal stories. How resilient we all are, and how supportive we all are of each other in our sorrow.

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.

Weekly Discussion Summary: August 28, 2019: Complementary therapies and resilience

Be the first to comment!

'It’s not necessarily about being pampered, although this can feel good, it’s more about the support and kindness of another human being.'

Our discussion topic focussed on complementary therapies and their effectiveness in helping us to build our resilience following a breast cancer diagnosis. Our members have tried counselling, mindfulness, CBT, acupuncture, meditation, reflexology, Reiki, tai chi, hypnotherapy and so on. A good therapist will listen to how we feel and offer appropriate therapies to suit our needs. Some therapies offer a quick fix, perhaps feeling more relaxed or targetting something specific like acupuncture for hot flushes. Others may take time to be effective, such as counselling, and things may get worse before a positive effect is seen.

Getting the timing right when trying a longer term therapy such as counselling is key, as acting too soon after diagnosis may result in a negative experience which may be off-putting for later when the talking therapy may be more useful. The trauma of a breast cancer diagnosis may take some time to process, and trying to crystalise our feelings may be harmful if taken on at a time when numbness is a useful self-protection mechanism. A good therapist will help us to make the right judgement at the right time.

Self-awareness can be profoundly liberating when achieved via counselling, CBT, psychotherapy or other kind of talking therapy, but it can also be very challenging work. We have to be ready to face our fears, to dig deep inside and look at what we have been through, what it means to us, now and in the future.

Our members have all had a primary diagnosis of breast cancer and many are living with a secondary diagnosis. Many reported finding the relaxation therapies very helpful both during and just after treatment, Reiki and reflexology proving very popular. Many cancer hospitals and centres offer these types of therapies to cancer patients free of charge and many of our members took advantage of this. Massage is also very relaxing, but many beauty salons and spas won’t offer massage to people who’ve had cancer without a letter from a GP or other medical professional, so it’s worth being aware of this when inquiring.

Sound therapy has been tried by a few of us and has helped considerably with fatigue. Herbal remedies have been used alongside our traditional medication to enhance healing and wellbeing and to counteract the side effects of our post-cancer medicines.

Some of us have shied away from complementary therapies, perhaps seeing themselves as someone who ‘just wants to get on with it.’ Personal wellbeing practices such as meditation and journalling are helpful. Others have taken a ‘bury my head in the sand’ approach, believing they don’t need or wouldn’t benefit from additional help. Calming meditative activities such as crochet, knitting and sewing are popular, providing both focus and distraction. Some of us feel that exercise is our therapy, we run or practice yoga or walk in nature.

Some of us are unclear on what therapies might be available and whether we have access to them as cancer patients. Many centres continue to support patients for up to 5 years after diagnosis, and those with a secondary diagnosis may find they have open access to their local centre. However some centres only actively offer complementary therapies during and just after treatment and this may not suit us, particularly if we are working as much as we can through treatment. Therapies offered vary considerably by region, and sometimes we may decide to find our own private therapists. It is key to trust the therapist and believe in the treatments undertaken. For some of us, we want to go to therapists who have been through cancer themselves, and/or have had specialist training in working with cancer patients.

Counselling is generally offered as a series of six sessions which may not be long enough to be fully effective, and as private counselling is expensive this can be a problem. Scratching the surface and opening up deep wounds but not following them through may leave issues unresolved once the counselling stops. Some of us have had unpleasant experiences with therapies, and it’s worth taking the time to find the right one at the right time, and to check qualifications of the therapist.

As a group we believe that psychological help should be part of the package of treatment following a cancer diagnosis, with much better information about how to access complementary therapies and what they can do for us. Counselling can be helpful even many years after diagnosis, and relaxation therapies provide an ongoing support for wellbeing whatever stage we are at. Self-care is so important following a cancer diagnosis and many of the relaxing therapies give us time and space to focus on our wellbeing, to feel cared for. It’s not necessarily about being pampered, although this can feel good, it’s more about the support and kindness of another human being.

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.

Weekly Discussion Summary: 16th August: Emotional experiences post diagnosis

Be the first to comment!

'The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on.'

This week we asked the question: ‘Why are some emotions harder to experience after a breast cancer diagnosis, and others easier? Does it have something to do with protecting us from emotional distress?’

As you might expect from a group of women who have all had a breast cancer diagnosis, some primary and some secondary, we all find intense emotion triggered by hearing about cancer, reading about cancer, talking about cancer, even adverts about cancer on tv. What surprises us, sometimes, is the unexpected rush of head-on emotion that we are confronted with, often when we are in situations which make it difficult to deal with. Some of us described having to withdraw from situations or conversations in order to take a few deep breaths to stabilise ourselves, to manage the threatening panic that wells up inside us. Our post-cancer brain is on high alert and wants us to run away from anything cancer related, flight being preferable to fight in social situations where we need to maintain our decorum.

The trauma that is caused by a breast cancer diagnosis weighs heavily on the brain. We want to make sense of what we’ve been through, we want to come to terms with it and its impact, but sometimes our need to process what’s happened is just too much for us to cope with in the moment. At these times, our brains will simply shut off the experience and we find ourselves numb and dissociated, distanced from our own suffering in order to allow our broken brain to deal with whatever is in front of us. Our fear is so intense that the brain builds a wall which is a barrier to our emotions. Sometimes we break through the wall, and as time goes on we may find emotions hit us like a train, causing upset that demands we plug the hole in the barrier and leave the emotions firmly shut away from view. As a result we may find ourselves living with conflict and contradictions in our own head, wanting to understand, accept and even make friends with our experience, yet being unable to face the fear which threatens to overwhelm us. Our feelings may become out of synch with our current experience, with sadness flowing over us when we are in beautiful surroundings or living with continuous low level anxiety.

Our members described a huge raft of different emotions which we struggle with, not least anger which sits alongside the cry of why me? Why can’t I move on? Guilt at surviving, guilt at the pain our cancer causes others. We are angry that we didn’t get the support we expected and needed during treatment, that we are not getting the support we need now. We are angry that our bodies let us down.

Self-awareness is strong for our members, many of us having worked with counsellors and psychotherapists in order to process our experience of breast cancer. However, self-awareness may not be enough as our brains will act to protect us without us knowing and this can cause confusion and can lead to depression. A downward spiral of feelings we can’t own or process that overtakes any rationality, with fear dominating our waking thoughts. Our fear may lead us to disengage from anything that forces us to feel strong emotion and we find ourselves living at arm’s length from our feelings and distancing ourselves from life rather than immersing ourselves. Some of us reported evaluating our emotional experience rather than allowing the emotion just to be there. Living in black and white rather than in colour.

There is an external pressure to put on a brave face, to be positive, all the time. However many of us don’t feel positive about our cancer, although we can be positive about the day to day of our lives. The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on. On the outside, we are smiling, positive, in control. On the inside, we may be isolated, lonely, terrified, sad.

We may be at our most vulnerable at the end of treatment for primary breast cancer. The chemotherapy, surgery, radiotherapy is finished. We are sent away, possibly with a packet of pills depending on what type of cancer we have, to get on with it. The structure provided by appointments is gone. Now we have time to think, time to process what we’ve just been through. Our emotions are heightened, just as everyone around us is congratulating us for being brave, lucky, strong (and all the other platitudes) and aren’t we glad we can get back to normal life now? It’s very common for depression to hit us like a stone and we may feel totally bewildered. We may find it hard to sit and think about our cancer, as thinking about it makes it real, and while we were on the treatment rollercoaster we didn’t have to acknowledge it was happening to us, we were just doing as we were told, not feeling very much at all, we were too busy.

Many members commented on how useful it is to have the safe space that is our private group where we can tell it like it is with no fear of upsetting anyone. We all want to protect our loved ones from how we really feel, we don’t want them to be feeling our fear. In time, many of us are coming to terms with what has happened to our bodies and the mental scars left behind. As one member put it: we move on to find joy in the simpler things despite being quick to anger. The depth of our emotion means we can move from elation to sadness in a heartbeat, holding both together with our fragility. We may be broken, but we are here.

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.

Weekly Discussion ~ August 9th: Crying: It's benefits

Be the first to comment!

'Perhaps crying is like a muscle, it needs to be exercised regularly in order that we can regulate it. Tears have a job to do, and serve a purpose.'

According to wikipedia, crying is the shedding of response to an emotional state, pain or a physical irritation in the eye. How often we refer to crying as having something in my eye, to explain it away, make light of it. Crying is as natural as laughing, but it’s seen as inappropriate to cry in many situations, and so we hold our tears in and put on our brave smiling face.

Our discussion on crying showed that within our group we have some women who cry at the drop of a hat, and others who never cry. Some of us would like to cry a little less easily, others would give anything for a good cry. For all of us, we worry that once we start to cry, we won’t be able to stop. Crying is a natural healthy way to release emotion, and can help us to get rid of emotion that we can’t label or talk about. A good cry can help us to feel lighter, relaxed and relieved.

Many of us have been brought up to hide our tears, believing it to be a sign of weakness. We save our tears for when we are alone.

Naz told us that there is some evidence that after a good cry we are better able to cope with stress. This indicates that it is good for us to cry when we feel overwhelmed. Many find that bottled up tears will escape at some point, perhaps when we at last have time to relax, away from our busy lives, or when our tears are triggered by something beautiful or poignant.

Our members, all of whom have a diagnosis of breast cancer, some primary and some secondary, reported many different experiences of crying. Some of us report feeling numb, unable to feel, unable to cry, perhaps because the pain of crying is too much to bear. Crying requires a letting go that feels impossible to face, but if we do, we may find that the very act of crying can bring us closer to our feelings, and by allowing ourselves to feel, we build the resilience we need to help us to move forward through ongoing difficulties.

Some of us noted that tears of joy and pride are frequent, perhaps because we become more appreciative and grateful after a breast cancer diagnosis. A bout of crying may start from something trivial - a tv advert, a newspaper article, something quite distant that resonates with us - but then our tears turn inwards and we find ourselves crying our hearts out, letting go of complicated emotions that we can’t even put names to.

Many of us push back tears, finding them intrusive and feeling that we don’t have time to cry. Some of us are afraid to cry, afraid to unleash our emotions. We may find crying depletes us of energy so we hold on to tears for fear of exhaustion. Some of us are ok with crying, but we don’t like it when tears catch us by surprise and we don’t know why we are crying. This can lead to a feeling of helplessness, that we are out of control and our tears are controlling us.

The shower is a common place for us to shed tears, getting rid of some of our emotion before we start our day. Our tears mix with the water as we cleanse our bodies and our feelings. Many of us find this a helpful way to start our day. Perhaps crying is like a muscle, it needs to be exercised regularly in order that we can regulate it. Tears have a job to do, and serve a purpose. And although many of us worry that once we start crying we won’t be able to stop, we do stop as our bodies have a way of ensuring we continue to breathe.

For those of us who can’t cry, Naz reassured us that it’s ok, it’s a normal reaction to trauma or grief. Learning to sit with our feelings is very hard, and can be helped by practising deep breathing, just sitting still and breathing in and out. Some of us did report a long period of not crying which ended with a surprising trigger and a good long cry.

Dry eyes can be a side effect of our medication and for those suffering, crying can actually hurt, which is a cruel contradiction for those seeking the relief that crying can bring.

We would like it to be ok to cry, for people to be able to sit with us while we cry and not be embarrassed or feel they have to put an arm around us. Counsellors are taught this and can be good at sitting with us while we cry. Lots of us keep our tears for when we are on our own, not wanting our loved ones to see us as weak.

Whether we love a good cry or find ourselves holding back the tears, our crying is part of our healing, part of our emotional release, part of our vulnerability and part of building our resilience.

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.

2 August 2019. Weekly discussions - Mindfulness: Its benefits and drawbacks.

Be the first to comment!

‘Many reported finding mindfulness helpful during periods of relative calm in their lives, but found it too hard to do when very stressed or sad.’

This week we discussed mindfulness, its benefits and drawbacks.
So what is mindfulness? Here is one dictionary definition:

‘a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique.’

Mindfulness has become a fashionable panacea for all trauma and distress, the modern antidote to frantic living. Courses are available in abundance, and it’s commonly taught in the workplace and even in schools. There is little research on how it actually works on the brain, and feedback is mixed on its efficacy, with some reports even finding it to be the opposite of helpful. Mindfulness is prevalent in the buddhist tradition and can include meditation and prayer. Some studies show it improves concentration, can help with a good night’s sleep, enhances quality of life.

Many of our women, all of whom have had a breast cancer diagnosis, some primary, some secondary, have found mindfulness very useful. It can be calming in stressful situations to breathe deeply and simply focus on the self or on our surroundings. However, focusing on our emotions can bring up all sorts of negativity and as a result, far from calming the mind, it can cause panic or upset. Accepting a flood of emotion in the moment, when what we are seeking is distraction from a difficult current situation, can be frightening. The idea that with practice we can actually control our thoughts and feelings is perhaps an attractive one, but it is difficult to master, and even more difficult to put into practice when most needed.

The link between body and mind is also the subject of much research, and it is undisputed that relaxing the body via breathing exercises can calm the mind. The vagus nerve is affected by controlled deep breathing and this has been shown to improve equilibrium. Acceptance is what mindfulness teaches, acceptance that the present moment is as it is, and that we are safe in that moment, despite what is going on inside us and outside us. It’s not resignation, a giving in type of acceptance, it’s an empowering peaceful way of keeping ourselves grounded. As one of our members put it, ‘(there are) subtle and not so subtle feelings that can emerge when we are focusing, and how in riding the waves of those feelings, we can drift safely back to shore.’

Visualising a calming scene when we’re feeling anxious can be a useful form of mindfulness - imagining being on a beach with the waves lapping against the shore can be helpful in counteracting the stress of a medical scan, for example.

Our women described many different ways of using mindfulness. Some of us have attended formal courses, some have used online apps, some have read books, some are self-taught. Some are using breathing techniques for relaxation without knowing much about mindfulness, others have taken elements of what we’ve learned, perhaps meditation or a body scan, and we use these to help them to calm our racing brains. Others have picked up on techniques of mindful eating and use these to address healthy eating issues. Yoga may be seen as a moving form of mindfulness, focusing as it does on proper breathing and fusing body and mind in relaxing movement.

Many of us probably practice a form of mindfulness unknowingly. Any focussed task that takes concentration can be done mindfully, and in a way that brings calm and relaxation. Crochet and knitting are a great example. This type of craft is both a distraction and a mindful activity, repetitive and calming.

For deep-seated trauma, such as may be caused by a breast cancer diagnosis, mindfulness may not be the right ‘therapy’ to address the issues. For some, mindfulness brings on sadness and panic, and this is a common reaction and often seen as failure. However this is perfectly normal and just means that mindfulness doesn’t suit everyone. It’s become so prevalent, everyone seems to be doing it. Mindfulness uses bodily sensations to connect to the present, through breathing or observing sensations in the body, and for those in pain or with scars and ‘broken bodies’ this means facing our trauma head on, which is just too much for many. Many reported finding mindfulness helpful during periods of relative calm in their lives, but found it too hard to do when very stressed or sad, for instance following a bereavement.

Perhaps instead of practising mindfulness we could consider slowing down our pace of life, so that we are naturally mindful of our own needs, the needs of others. For those with secondary breast cancer, this slowing down may be enforced by health needs, and for some it reveals a different way of living, a more mindful way of being. Would we actually be better off spending time with a good friend, really connecting, really listening to what’s going on in their lives, as opposed to taking time out alone to focus on ourselves? There is a lot to be said for mindful living.

Mindfulness has found a place in our world and its popularity speaks for its efficacy. However, it doesn’t take the place of talking therapies for deep issues and post traumatic stress disorder (PTSD.) Perhaps the best use of it is to find what works for you and practice that.

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.


Sunday, 21 July 2019

Weekly Discussion Summary ~ Moving forward

Be the first to comment!
'Most of all we want to spend time with the people we love.'

A breast cancer diagnosis can be traumatic and leave us at one extreme numb, or at the other, overwhelmed by our emotion. A diagnosis of secondary breast cancer even more so. This week our discussion focused on what we have found helpful in moving forward: things we have done, things we have changed.

Moving forward, for those of us with secondary breast cancer, means living with cancer on a day to day basis, knowing that treatment will be ongoing.  For those recovering from a primary diagnosis, it's about gaining physical and mental strength with which to live our best lives alongside the ever present fear that our cancer will spread or recur.  

Our women have found many things helpful, both practical and attitudinal.  After the shattered self-confidence which accompanies harsh treatment, learning self-respect, to value ourselves, damaged as we may be, is key. We find that practising self-compassion is vital, as we try to look after ourselves well, allowing ourselves little breaks, treats, gifts to ourselves. We give ourselves a symbolic hug regularly by spoiling ourselves, just a little bit. 

Exercise is very important for all of us. For some, this is a few stretches following surgery, a totter round the house, a gentle stroll up the road. For others, it's a run, a climb, a hike, a physical challenge that says to the world, here I am, look, I can still cut it! Despite cancer, despite extreme fatigue, medication side effects, I'm here, moving to the very best of my ability, even if it isn't as much as I could do before. 

We pay attention to our diet, drinking more water, eating well. This helps us physically and mentally with mood stability.

We are more accepting, less questioning. We see the bigger picture, we no longer sweat the small stuff, although it's the small stuff for which we are hugely grateful and our awareness of that increases. We notice more. We are open and determined and we do things our way, less affected by what others think. 

For some, setting personal goals and challenges is key to moving forward, this allows us to push forward, to help design our own futures. It's the challenge that is the triumph, not the outcome. If we make up our minds not to be limited, we can stretch ourselves a little further each day.  

For others, slowing down and being less busy is what helps us move towards an inner peace, using perhaps meditation or writing, making choices which allow us to experience life in a more reflective way.

We learn that stress may be self-imposed and we learn to say no, we learn not to worry about things we can't influence. We are more relaxed about what we can and can't do and can let go of getting it all done straight away, allowing things to wait and knowing that we've done our best, that it's good enough.

Some of us have tidied up our lives, de cluttering our homes alongside our lives. We want our surroundings to support us not hinder us. We tidy up our friends list too, seeing more of the people who support us and make us feel good. 

For those of us with secondary breast cancer, there may be an intense desire to re-prioritise and doing what we want to do with our lives becomes more urgent. These may be big things like travelling, getting married.  Most of all we want to spend time with the people we love. 

Others may say to us 'Live every day like it's your last' and some of us want to to tick off bucket list items and off we go, cramming it in and making as many memories as we can. For others, it's a gentler approach, perhaps involving living a life much the same as prior to diagnosis, thinking about careers, studying, always having a self improvement goal to reach for. We might change our jobs, reinvent ourselves in new careers which may be more challenging or perhaps less demanding. We might retire, go part-time. We might find a creative outlet or take up voluntary work. We might get a pet or take up a new hobby.   It's about finding a balance, really understanding what we want from life, and making it happen. It's about changing the things we can change rather than wasting energy on the things we can't change. 

Many women talked about how hard it it to make the adjustments needed to move on, whether that's after primary treatment or following a secondary diagnosis.  One thing is clear, with support our members are all making progress, and we are dedicated to helping one another build the resilience needed not only to cope, but to thrive.

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 the public Facebook page. 

Monday, 15 July 2019

Weekly Discussion Summary ~ The loneliness of cancer

Be the first to comment!
'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

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 the public Facebook page.

Saturday, 6 July 2019

Weekly Discussion Summary ~ Exercise

Be the first to comment!
“We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one.”

This week our discussion focused on exercise, particularly dance, and how it can help us to feel and cope better with the side effects of cancer and it’s treatment. 

The benefits of exercise as part of a healthy lifestyle are well documented, and it makes common sense that a fit body will contribute to a resilient mind. Our group, which is made up of women with both primary and secondary breast cancer diagnoses, were interested in the specific ways in which dance and exercise help us to feel better. 

Naz explained that exercise may lead us to feel more positive, energised and lighter. Our brains work more efficiently and this, in turn, can lead to better emotional regulation. Exercise can lift our spirits as it releases neurotransmitters in the brain which increase the brain’s reward responsiveness, which may become dormant when we are depressed.  

We shared how we had used exercise, relied on exercise, tried exercise for the first time, given up and restarted exercise, become positively addicted to exercise. Some of us stopped exercising during treatment - either because we felt too poorly, or as rest became a priority, some of us continued as much as we could, while others stuck to a gentle toned down routine. 

For those of us who love exercise and have a strong routine, a breast cancer diagnosis can be extremely frustrating as we may have to modify both frequency and intensity. Treatments like chemotherapy and radiotherapy may put a stop to exercise, and fatigue is a very common problem. When we feel weary, forcing ourselves to get up and move is difficult but may be as energising as rest, and many reported feeling lethargic when they missed a few days of exercise. 

For many of us, exercise is a pleasurable part of our lives.  It may be running or walking, swimming, yoga, horse riding, sailing, gardening, cycling, climbing, rowing, caving, dancing. Any activity that involves repetitive movement can be helpful on many levels. It can also be a mindful meditative practice, calming the mind while working the body. More challenging activities that require co-ordination of mind and body, such as more formal dance where we are learning steps and routines, are an excellent mental as well as physical workout. 

The joy of moving our bodies to movement is evident in the comments from those of us who participate in dance. We listed ballroom, tap, ballet, disco, belly & salsa, and many of us have trained for medals and performances, adding the extra dimension of formally recognised achievements to the mix. Zumba is increasingly popular, and many different fitness through dance classes are now available. Music touches us emotionally and dancing brings our bodies closer to our brains and increases the fitness of both. It brings a sense of freedom as we lose ourselves in the music and move, as well as discipline as we learn new moves. Dancing to the radio whilst doing the household chores is also very popular for us! 

We reported feelings of wellbeing associated with all types of exercise, including a sense of release, of alleviating worries and anxieties. Team games can help with feeling cameraderie, a part of something. Exercise has brought a better night’s sleep for many of us, helping us to feel physically refreshed and rested. Many find it’s helpful in managing anxiety. 

Some of us are continually frustrated that since being diagnosed with cancer we are unable to exercise as much as we used to, with some activities proving impossible due to fatigue, aches and pains, and lymphodema (swelling in the armpits, chest and arms as a result of breast cancer treatment.) We felt that there is a need for advice and physiotherapy to help us and offer individually tailored advice.

Although finding it hard to accept the changes in activity levels forced upon us by cancer, or by the side-effects of our treatment, we are all focused on what we can do rather than what we can't do. We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one. We keep trying, we stumble, we start again, we never give up. When we feel weary and beaten, a gentle stroll around the block can completely change our mood. 

A breast cancer diagnosis can undermine our confidence, and our eagerness to join in with group exercise can wane as a result. However exercise can also help to rebuild that lost confidence, and many of us have managed to join classes, gyms or teams. For others, walking in nature with friends, a dog or on our own provides peace and calm, and escape from the hustle and bustle of everyday life. 

A breast cancer diagnosis brings fear and anxiety. For some of us there comes the question - what’s the point? We may put all sorts of things on hold, including our exercise regimes, while we recover physically and emotionally from the trauma of our diagnosis. Once active treatment is complete, many but not all of us, reported that feeling able to get back on track and exercising again can feel like one step on the path towards feeling good again.

Exercise related goals and achievements can make us feel good about ourselves, whether we complete a marathon or manage 10,000 steps a day, it doesn’t matter.   There may be days when getting off the sofa and shuffling round the house may be a huge effort, and when we have down days, moving can really help us feel we’ve accomplished something good. 

As an extra positive, a few of our members were inspired by our discussion to get out there and exercise after and reported back about how much better they felt.  However hard it feels initially, moving our bodies undoubtedly helps our minds to function better, so making the effort to find something we love to do is well worth the effort.

If you’re 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 the public Facebook page. 

Saturday, 29 June 2019

Weekly Discussion Summary ~ Alcohol and breast cancer

Be the first to comment!

"If we give up drinking will we avoid the return of our cancer? Do we worry our friends look at us a little oddly if we have a drink, are they thinking, well, she shouldn’t be drinking, she’s had cancer. Or, do we find others thinking we’re party poopers because we’ve chosen not to drink anymore?”

Always a controversial topic, we talked about alcohol and breast cancer in this week’s discussion.

Naz explained to us that she had read up on the subject to try to provide a balanced view of the evidence to support, or not, a link between alcohol use and breast cancer. 

Her conclusion - the jury is out: some studies appear to find a correlation, while others may go so far as to suggest that a small amount is beneficial in preventing breast cancer. One challenge is that studies consistently fail to account for other factors and many rely on self-reporting which can be unreliable. They don't factor in the many different types of breast cancer, and they don’t differentiate between primary cancer and the risk of it returning, either as recurrence or secondary. All in all, Naz told us, the view is confused and inconclusive.

As women who have all had a breast cancer diagnosis, whether primary or secondary, we gave a wide variety of views and personal stories related to our drinking  habits. Some of us have never had a drink. Some of us used to be heavy drinkers and have now moderated our drinking habits. Others did not drink before diagnosis but have now decided to take a tipple now and again. Some of us have chosen to give up alcohol since our diagnosis, sometimes as a way of regaining control over our health, but often because we feel just plain ill if we drink! Some have not changed their drinking habits much following diagnosis. 

Many of us look around following our diagnosis to try to find something or someone to explain how we developed breast cancer. We may look at our family history, or examine our lifestyles with a fine tooth comb. Some of us would like to find a reason for our diagnosis since this offers us the opportunity and hope that if we change our behaviour following our diagnosis we can keep ourselves healthy for the rest of our lives. 

Can we blame alcohol, give up drinking, be cured? (or for that matter weight gain - we go on a diet and we are well? Or stress, we calm down and relax, and we won’t get sick?)

This, of course, is magical thinking. 

The list of possible causes is long and varied, and there is evidence to suggest that some types of breast cancer can take many years to develop. We look back to our lifestyles and events from years ago. Could it be the age at which we hit puberty, we wonder? The age at which we gave birth to our children? Whether we breast fed our children? Whether we took the pill or HRT or had a Mirena coil fitted? 

Was it what we ate? How little exercise we did? Our weight? Whether we smoked? Or something fixed such as blood type, a faulty gene, family history? 

We can be disappointed to discover that no one factor is involved. Getting breast cancer is, at the end of the day, just rotten luck. 

Some of us find it empowering to take control of things like of our diet and alcohol use. But there can also be a huge pressure to make changes to our lifestyle at a time when we are psychologically vulnerable. Even worse, some of us had experienced critical comments if we don’t make any changes. The upsetting assumption being that we brought this on ourselves in some way.

If we give up drinking will we avoid the return of our cancer? Are we concerned that our friends might look at us a little oddly if we have a drink, are they thinking, well, she shouldn’t be drinking, she’s had cancer. Or, do we find our friends thinking we’re party poopers because we’ve chosen not to drink anymore?

Our choices around alcohol may be affected by our treatments, for example chemotherapy can make us feel nauseous and can intensify the impact of alcohol on us. For others, a little drink is a pick me up during a difficult time. Some of us felt that hormonal treatments can enhance the effects of alcohol and intensify hangovers. 

Whatever our position, we want to make informed choices based on current knowledge, how we feel about alcohol and how alcohol makes us feel when we drink it. We don’t need to be made to feel to blame!

For many of us, enjoying a drink or two is a regular activity and represents the balance between enjoying life and remaining healthy. It is a way of relaxing that many of us are happy with, and we feel we’ve earned it!

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 the Facebook page. 

Saturday, 22 June 2019

Weekly Discussion Summary ~ Coping with Tamoxifen and other Hormonal Treatments

Be the first to comment!
Coping with Tamoxifen and other Hormonal Treatments

The topic for this week’s discussion was ‘Coping with Tamoxifen and other Hormonal Treatments.’ 

Our discussions about Tamoxifen and other hormonal treatments for breast cancer are among our most commented upon. We are struck by the struggles that some women experience and some of us suffer significant adverse side effects. It may be that for every woman who struggles, there are several who tolerate the drugs without problems, but we suspect these are few. What baffles us is not only the lack of support and information available for women prescribed these treatments, but for many, the lack of recognition given to the cumulative impact of these effects on our quality of life. Since many of us are now taking hormonal treatments for ten years (some of us for five), that, we agreed, is a long time to be taking tablets that make us feel unwell. 

Very often, our active breast cancer treatment finishes - surgery, chemotherapy, radiotherapy - and then we are sent off into our futures with a packet of pills, and the message we are given is that we are now “well” and we can carry on with our lives. Our experiences point to a very different reality and many of us feel far from well.

There is substantial evidence to support the effectiveness of tamoxifen and aromatase inhibitors (letrozole, anastrozole, exemestane) in preventing a recurrence of breast cancer. These drugs work by eliminating oestrogen from the body, thus providing protection against oestrogen fed cancers. It’s important to bear in mind that there are many different types of breast cancer, and each of us will have her own individual treatment regime. For those cancers not oestrogen receptive, such as triple negative breast cancer, there is no equivalent ongoing drug, which can leave those not taking medication feeling unprotected and vulnerable.  

Generally speaking, Tamoxifen is given to pre-menopausal women and AIs to post-menopausal women, as the drugs act on the body in a slightly different way, but we do find many older women commonly taking Tamoxifen so this is not a hard and fast rule.

For those of us who tolerate these drugs well, there is a significant comfort factor in knowing we are doing all we can to prevent the recurrence of cancer, although it needs to be remembered that taking these tablets can be a daily reminder of breast cancer.  For those of us who suffer side effects that compromise their quality of life, this can present a huge challenge. The list of side effects is varied and long, and may include: menopausal symptoms such as hot flushes and bone, joint or muscle pain, mood swings, fatigue, weight gain, vaginal dryness and impaired cognitive function to name but a few. Many women reported feeling below par all the time, and unable to fully enjoy life as a result. As a lack of oestrogen may affect bone density, this needs monitoring and is a further worry. For some of us, the side effects are so bad that we cannot tolerate these treatments, and so in consultation with our oncologists, we experiment with different versions of the medication and we try to address the side effects with counteractive treatments. For a few of us, there comes a point where we just feel so awful that we decide not to continue taking the drugs. 

The difficulty is that for these women, there just isn’t enough help and support in managing the side effects. It is a worry that women give up the drug without knowing that they may be able to take action to feel better and find that they can keep going after all.

Our previous discussions focus on how we feel when taking these drugs, and our summaries are available on our website. There is also a specific piece on branding.

What action can we take to help ourselves whilst on Tamoxifen or AIs?  

Trying a different brand is often what it takes to settle the side effects, and sticking to one brand once we’ve found what suits us can also be helpful. This isn’t always easy as pharmacies tend to supply the cheapest option at the time, but it is possible with the help of a friendly GP and pharmacist who will specify and fulfil a brand named prescription. 

Side effects may be more severe at first, so it’s worth persevering to see if they settle, but also we think that side effects may be cumulative with aromatase inhibitors as our body’s oestrogen becomes more and more depleted. 

Hot flushes may be helped by a mild dose of an antidepressant, and some women have found acupuncture helpful.  

Joint pain is helped by regular gentle exercise. Supplements may be helpful, such as magnesium, and we suggest consulting a medical professional before taking these. 

Taking short breaks to allow the body to recover may be useful, again in conjunction with our GP or oncologist. 

Our advice to anyone taking these drugs is not to suffer in silence, but to seek help. Speak to your GP and have a frank discussion. Groups like ours, we agree, can help hugely as we share tips and support each other with our issues.

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.