Weekly Discussion Summary ~ Our views about the privileges and challenges of aging

"Do not try to live forever, you will not succeed.” *

How does a diagnosis of breast cancer impact on our views about the privileges and challenges of ageing?

This was the question we focused on in our weekly discussion. Life is a privilege, and one that is often not fully appreciated until it is threatened. When we are diagnosed with a life-threatening disease such as breast cancer, that privilege is brought into sharp focus. 

We are all women with a diagnosis of primary or secondary breast cancer. We are women of all ages and we have all faced our mortality as part of our illness, and our fears that our lives may be shortened by the disease are real. For women with secondary breast cancer, their perspective is shaped by the knowledge that their disease isn't curable, although treatments often halt its progress for many years. 

If life is defined by the spirit, a life well lived, then does the length of that life matter? Is living to 'a ripe old age' a valid goal, or a vain one? If we know someone who is dying, don't we want them to stay, to live, for as long as possible? Is it a trait of the human spirit, to want to live a long long life? If so, then why do some people choose to end their lives, by suicide or Dignitas? 

Our views on ageing were rich and varied, with some of us wanting to live as long and as well as possible, while others value quality over quantity. A life of no regrets, with no time wasted. Some of us throw ourselves into a busy life, with bucket lists and living each day as if it were our last. Others find this approach exhausting and strive for the peaceful and the ordinary. 

We talked about our elderly relatives, of illnesses in old age which may change people, such as dementia. Here, our views and feeling are shaped by our experiences. The suffering we see, the loss of control, and the challenges of living with reducing abilities and having the resources to adjust have parallels with our experience of cancer. 

Some are preoccupied by their worry they are a burden to others, the human spirit does appear to cling on to life, through dementia, immobility, pain. If we have cared for elderly relatives who have been unwell (and for those in the caring professions who work with the elderly), we are confronted with these challenges and their impact on our own values and our feelings about cancer come rising to the fore - we may decide that growing old and becoming dependent on others isn't something we want. When quality of life is poor, how do we find pleasures? Does there come a time when decline leads to a desire for life to be over? We may witness frustration, and fear being old and infirm. However we can try to cast this aside and focus on living every day as best we can and being happy. 

We feel that breast cancer ages us, in that our physical and cognitive capability may be reduced following treatment, at any age. Harsh treatment regimes leave us depleted and adjustment is difficult. For those of us with secondary breast cancer our treatments are ongoing and can be debilitating. We may feel old before our time, which may limit our options, restrict our choices. 

Some of us feel that our diagnosis gave us a second chance, we've reassessed our priorities and our values. Compassion and kindness lead to contentment for many. For others, death feels closer because of our diagnosis, we no longer feel the invincibility of healthy youth, death is no longer abstract. Some of us make wills, plan funerals, declutter and tidy up. We want to be ready. Many of us celebrate life with rituals to mark the passing years, perhaps with lavish family gatherings and big birthday parties, while others let birthdays slip by quietly. 

We talked about our faith and the different ways of coming to accept our suffering, our mortality, our reason to be on the earth and how living in the moment might help us. 

We want to get our vitality back and be the best we can be, without counting numbers. We can't control what happens to us, only how we respond. 

Whatever our views, appreciating our lives was a key theme, whatever age, with many citing simple joys and everyday pleasures as being of huge importance, alongside gratitude. 

*George Bernard Shaw

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

Weekly Discussion Summary ~ Coping with the January blues

Coping with the January Blues 

On the day before 'blue Monday', apparently the most miserable day of the year, our weekly discussion focused on how to beat the January Blues. 

For a few of us, January is a month of peaceful hibernation, a time to rest in readiness for more active times to come, observing those hopeful harbingers of Spring: a snowdrop here, a birdsong there, catkins dangling from the still bare tree branches and blue skies which belie the chill in the air.  For others, January means it's been a long time since the before-Christmas pay day, and the cold short days and long dark nights drag on as we endeavour to keep new year's resolutions made with a brave heart and try to hold ourselves together amidst our sadness. 

Our members agreed that staying active and doing something to keep our minds occupied helps us to feel more cheerful. Sometimes the smallest of activities can lift our mood, from the satisfaction of tidying up to taking a short stroll out of doors.  

Here is a list of little cheered-uppers that our members suggested for you to pick from! 

- read a good book
- do some craft work
- bake, cook
- count your blessings 
- treat shop - a lipstick, a candle 
- browse seed catalogues 
- keep going with that challenge - dry or RED January or that healthy diet, step challenge
- potter outside
- write it down 
- see a friend for a natter 
- plan and maybe even book a holiday 
- do a puzzle 
- have a good cry - very therapeutic 
- catch some Pokemon! 
- eat indulgently - crumpets anyone?
- watch a good movie
- practice yoga, at home or find a class 
- get up a team and to a pub quiz
-  sale shopping, bag a bargain! 
- buy spring flowers for indoors, hyacinths perhaps. 
- treat hands and feet with a nice cream 
- try something new - a book group? An art class? 
- a little wine. If you're not doing dry January, obviously 
- plan days out, even a wedding for a few!
-go swimming
-de-clutter - just tidying out one small drawer can be hugely satisfying 
- if you're really struggling, get help. See your GP or seek out counselling

Having something to look forward to is a great mood lifter, although for some of our members the stress of having cancer means we don't want to look too far ahead. For those of us with anxiety about the future, finding joy in everyday small pleasures works best. One day at a time, the evenings draw out, the sun rises a little earlier and Spring is on the horizon. With the help and support of each other, we will get through.

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

Weekly Discussion Summary ~ Financial cost of breast cancer

We often talk about the emotional and physical cost of a breast cancer diagnosis. This week, in our discussion, we discussed the stark reality of the financial cost.

Having cancer incurs hidden costs that are rarely called out, and at a time when our ability to earn is reduced. We may need to extend our sick leave beyond that which our employer will support with sick pay, we may not be able to return to work at the same income level after treatment, or at all. It is common to move from full time to part time, to change careers for something less stressful. Self-employed women may be left without income for a considerable period and small businesses may suffer beyond repair. 

Our group is made up of women with both primary and secondary diagnoses. Whilst many with primary breast cancer may return to work after treatment - and a few with secondary breast cancer continue working - many of us with secondary breast cancer continue with treatment and often are unable to continue with their careers. There is often a cost for specialist treatment and palliative care if we become seriously unwell.

Returning to work and continuing to work can be fraught with problems, with some of us struggling on short phased returns with little management support. Fatigue is a long term after effect of cancer and sometimes this can be debilitating. For those who do successfully return to their old jobs,  they may no longer be wanting or have the energy for promotions or career progression.

The additional costs of having cancer include:travel costs to our treatment centre, parking costs, hats and scarves and wigs for that time without our hair during chemotherapy, pillows and pyjamas that open down the front for surgery, specialist bras for post surgery and then pocketed bras and swimwear forever (which cost more than ordinary bras and are mostly ugly to boot!). 

Exercise and eating well are key to our health, with many of us taking supplements, and maintaining a healthy lifestyle can be expensive. 

Travel insurance costs rocket up, particularly for women with secondary cancer, and life policies may become invalid. Getting further life cover and private medical insurance may become prohibitive. Being at home all day during treatment means heating costs go up. 

Some of us had paid for genetic testing which we were not eligible for on the NHS. This can be expensive, but so important for many wanting to understand future family risks. 

Many members had critical illness cover which was a huge help for them, with some being able to pay off mortgages. Others turned to relatives for help. Some have negotiated retirement on medical grounds, often involving a huge drop in income. Others have left stressful jobs and set up their own businesses or found less demanding work. 

Some have cashed in savings plans, including pension plans, or sold their homes to make ends meet.  ESA is available for some, and PIP, and prescriptions for all medications are free following diagnosis. 

Some used annual leave instead of sick leave for the time off work needed, but this of course left no holiday time, hardly supporting a healthy recovery. 

Macmillan helps cancer patients in financial difficulty with small grants to cover treatment travel costs. Banks offer cancer support schemes, which might freeze loans provide mortgage holidays for example, but these come with mixed reports regarding their usefulness. Claiming benefits involves completing long complicated forms and assessments which can be very stressful, and Macmillan do assist with this. Macmillan can also advise on unfair dismissal, redeployment and discrimination at work. 

Having cancer can mean a permanent drop in income and lead to a necessary change of lifestyle.  For those who get by, luxuries like travel and overseas holidays may become a thing of the past. It may take years beyond diagnosis to return to financial stability. At its worst, cancer may bring with it real financial hardship, the stress and worry of which cannot be helpful to our reduced level of health and fitness. 

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

Weekly Discussion Summary ~ Goal setting and beginning the new year

“New Year, New You. Are you superwoman, taking on sky-high mountain-moving feats of hard work and courage? Or do you have quieter plans, just as newsworthy but less spectacular?”

In this week’s discussion, our first for 2019, we explored our relationship with goal-setting and beginning new years.

Our challenge, we agreed, going into a New Year is in dealing with the uncertainty that a breast cancer diagnosis of primary and secondary diagnosis brings. We want to do so much, to set goals and new year's resolutions like everyone else, but we can feel nervous about our long term goals as our anxiety about the future kicks in, and we worry about meeting expectations, those of others and just as importantly, our own.

New Year, New You. Are we superwoman, taking on sky-high mountain-moving feats of hard work and courage? Or do we have quieter plans, just as newsworthy but less spectacular. Others tell us we've been blessed with a second chance, or we surely want to make the most of it, after all, we're alive or we’re getting back to normal now?

Post-holiday blues are common after Christmas, and New Year is often an emotional time. Many of us are getting back to work, others are resuming treatment after a break. For those of us diagnosed at this time of year, our holiday is forever tainted with memories of the shock of finding out we have breast cancer. Whether we have primary and secondary breast cancer, there is gratitude in spending another Christmas with family and friends and to those of us with secondary breast cancer described anxiety for what another year of living with incurable breast cancer will bring.

Each of us has our own unique story to tell, and every plan is grand in its own way. Learning not to compare ourselves to others, and learning not to compare ourselves to who we were before our diagnosis, may be key in looking forwards and managing expectations. 

A common goal for so us, unsurprisingly, is to improve our health. This may mean eating well, stepping up our exercise, losing weight. For some there might be an end in mind - feeling and looking great for a wedding, or being fit for the arrival of a grandchild, for example. Others are aiming to complete challenges such as 5 or 10ks, half or full marathons, while others have set walking challenges or are doing dry January or cutting out meat or sugar.

Some of us are feeling cautious, taking baby steps on our road to healing. Others want to take more risks and even be reckless in throwing ourselves into life. Being present in our own lives, being here in the moment, whatever we are doing, and enjoying it, is a decision many women have made. Whether we are conquering Snowdon or resting in front of the TV, fully immersing ourselves in our lives may be a perfect resolution.

Some of us have gardens we want to tend, others have plans to move house or tidy up messy relationships.  Many would like to simplify and declutter. Treating ourselves regularly is another theme. Saying no and being kind to ourselves is something we strive for, we want to spend our time doing the things that make us happy and less time on our shoulds or musts. Goals might be to travel or it might be reading 100 books. Some want to study, to finish courses or take on new ones. New jobs may also be on the horizon.

Several of us mentioned acceptance, in the sense of coming to terms with our capabilities and our limitations. Perhaps looking into what 2019 will bring involves finding a fresh perspective, a positive one but not a falsely bright one as we seek authenticity and a strong streak of realism. We want to be able to have down days, to feel and express our sadness, we seek permission (perhaps from ourselves) to grieve - for the loss around us, for our old selves. If we treat ourselves with kindness, and embrace who we are now and who we want to become, we can achieve everything we choose to aim for, and more. And let's not forget that there is no failure, only learning.

'The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.' (Marcel Proust)

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.

Weekly Discussion Summary ~ Were there moments in 2018 when you surprised yourself?

Were there moments in 2018 when you surprised yourself?

This was the focus for one of two linked group discussions over the Christmas period. While some of us found touching on such moments a challenge, Naz told us that this was a worthwhile exercise with significant rewards because even if we cannot come up with a concrete example, the exercise itself turns on reward hubs in our brain which can reinforce neural connectivity boosting positivity and confidence.

Taking on challenges after a diagnosis of primary or secondary breast cancer diagnosis can weigh heavy on us - both body and mind. We are often exhausted as we end up trying even harder to manage, either to try to maintain our pre-diagnosis abilities, or, by surviving as best we can to the best of our current abilities. As we know from previous discussions, we often develop a different perspective of ourselves that can undermine our efforts to rise up to the occasion. But, just sometimes, we surprise ourselves and we manage something we didn’t think was possible. This can have significant implications for boosting our self-confidence, let alone boosting brain power.

As a group, our achievements made for inspiring reading - for some, the achievement was doing a Race for Life or  another physically demanding challenge; others had taken up a new interest or skill, say art, or writing, some shared completing MA’s or other other academic achievements. Some of us had challenged unfairness, for example discrimination in the work place or advocated for ourselves and our needs to an unsupportive manager. No less significant were what may seem, on the face of it at least, more ‘modest’ achievements - returning to work, doing an extra shift, resuming a much loved skill which we no longer found easy, a road trip, or even driving a car for the first time - all are worthy of celebration.

We learned that it does not matter if we do not always end up achieving the end point of our goal. Success is, as they say, the journey not the outcome. But, Naz told us that the challenge itself is the key ingredient of our goal. And once we make that challenge our own, taking ownership of it, no one can take it away from us, because it represents our mind-set: that we are about thriving in the face of adversity.

If you are a woman living in the UK and you have a diagnosis of breast cancer, you would be welcome to join our private group. Please message us on the public Facebook page.

Image ~ Sunset at Connel with permission from amazing Claire

Weekly Discussion Summary ~ Cancer Related Fatigue

“Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest.”

Cancer related fatigue is a well documented side effect of treatment. What's not so commonly known, except by those struggling with it, is that fatigue can continue to affect us for many years. It also appears to be less commonly known that post cancer fatigue can severely affect us, as many of us described a lack of understanding from our family and friends. For some of us, this lack of recognition was just as hard as the fatigue itself so it was a massive relief to share and to know we are not alone. 

We are all women diagnosed with primary or secondary breast cancer. For women living with secondary breast cancer, ongoing treatments can lead to fatigue becoming a permanent fixture. However, this can be true for those of us living with primary breast cancer or lymphodema too. Many of us spoke about our shock at finding that we were exhausted, perhaps exactly at the time we, and those around us, might be expecting our normal energy levels to return as our active treatment is complete. 

Fatigue may be debilitating to the extent that we can no longer hold down full-time jobs, and some of us have to give up work all together.  Some do this happily and find a more manageable pace of life. Others are frustrated that they can't work, and for many, work is part of our self-esteem and losing it is a huge blow. 

At the other end of the spectrum many women continue to live full lives which from the outside appear normal. Our struggle against fatigue becomes a daily battle requiring a delicate balancing act. For some, this means we give all our energy to our work, leaving nothing for family and ourselves. For others this means a pattern of boom and crash, where periods of activity are followed by a need to rest and recover. This may be on a daily basis or in chunks. 

Fatigue is not just physical, it also tires us mentally and cognitively. The brain takes the energy it needs to get by, and this may leave it depleted, which in turn leads to mental exhaustion. When we are exhausted we may feel low, possibly depressed, and this becomes a vicious circle fuelling the fatigue.

Exercise was widely reported as being helpful in combating fatigue, with everything from swimming to running to walking to dancing to yoga to aqua aerobics to martial arts proving useful. Moving our bodies in a way which is enjoyable can be beneficial, and research into this field substantiates our experiences. Fatigue invites us to rest, but alongside sensible exercise. However, exercise is not a quick fix for many of us, and needs to be graded and gradual to avoid a boom and bust, or further episodes of illness. If exercise can be supervised to ensure levels are controlled and to reduce the risk of overdoing the activity, it seems more effective. Some of us don't exercise formally but incorporate physical activity into our routine by walking everywhere and others have active jobs. 

Some of us spoke of worsening fatigue after the end of treatment, with common colds or stress causing us to flounder.  A few of us have extreme fatigue with burning nerve and muscle pain. It is tempting to be very active on days when we feel good, but pacing ourselves is so important in order to avoid overdoing things on good days and subsequently crashing. Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest. 

Fatigue and sleep are awkward bedfellows, with each affecting the other adversely. We spoke about our problems sleeping, which may have many causes, leading to extreme daytime tiredness. The one thing we crave is sleep, and it eludes us. 

Counselling has been a help for some of us, helping us to devise coping strategies. Stopping to listen to our bodies, and pausing to breathe deeply, are useful too. Acupuncture and other complimentary therapies are helpful for some. Fatigue management clinics exist in some areas but support is not widely available. Deep breathing, relaxation, meditation are all worth trying to improve our sleep. An app called 'Untire' was recommended as a useful.

A key theme is that other people don't understand our fatigue and expect us to be back to normal. It's hard to explain and people to respond by telling us that they are exhausted too! All we can do is try to be responsive to our needs and kind to ourselves, doing what we need to do even when those around us are not empathetic. 

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.

Weekly Discussion Summary ~ Our Strengths and Weaknesses

“Vulnerability and strength are two sides of the same coin: you cannot have one without the other.”

This week, we listed three strengths and two weaknesses in our discussion, including the ways we might address our weaknesses.

Many of us found it easier to focus on  our weaknesses, perhaps indicating a general negative bias. We have all been diagnosed with breast cancer, some of us primary breast cancer, some of us with recurrences, and some of us secondary breast cancer. Our discussion confirmed that our diagnosis changes us and we talked about lessons learned, weaknesses turned into strengths and vulnerabilities transformed into resilience. We have faced our mortality, undergone harsh treatments, our bodies and minds irrevocably changed. Yes, we have suffered, but we have also grown, found strength in sharing, overcoming, enduring. 

Many of us see ourselves as caring and kind, tenacious and determined.  We are good problem solvers and fiercely loyal to family and friends. We are generous, independent, smart, passionate and creative. We are conscientious and we never give up. 

We may come to appreciate the small, simple everyday things in life more, we may find we can let go of insignificant worries more easily. 

We see our weaknesses as often stemming from our sadness and our experience of loss. Inevitably in our group there is loss, as the reality of breast cancer is that women are robbed of their lives too soon. This can lead to feelings of guilt - why her, not me? and a sensitiveness that leads to holding on to deep fears and sadness rather than expressing our feelings. This is where a safe, confidential space to share (provided by our closed private group) can be so important. 

Many of us find it hard to put ourselves first, even though our need for self-care may be huge. Treatments and ongoing medication may leave us fatigued and with numerous side-effects that are difficult to explain to others, and so many of us battle on every day feeling low and tired. Many of us have demanding jobs, family responsibilities, caring roles, and so on, and today's society demands a lot from all of us.

It's hard to slow down and find time to look after ourselves in a world that values busyness. Self-compassion is a value we advocate in our group, but it seems that many of us find it extremely hard to practice it. By contrast, some of us are worried that our self-care is close to laziness and we are good at avoiding chores in the name of needing to rest! 

A few of us have given ourselves permission to be happy. So many of us see ourselves as responsible for everyone else's happiness, which of course we cannot control, and so we never rest because we cannot control how others feel. If we are to address this tendency, we must put ourselves first and attend to our needs before others - the well-known idea that we must put on our own oxygen mask on the failing plane before fitting others' masks. Sometimes we need all of our energy for ourselves, we may need to ask for help, we may need to listen to our bodies and treat ourselves with the kindness we show others. 

Resilience can come from acknowledging that it isn't what happens to us that matters, but how we react and what we can do about it. If we are wise and insightful, we can exploit our weaknesses and move our vulnerability towards strength via blending, melting and moulding. It is not easy and for many, our breast cancer diagnosis brings fatigue and low mood, perhaps depression. However if we can sit up and take notice of the moment, acknowledging the beauty and joy in the everyday and succumb to a craving for life, this can carry us forward. We may seek a bucket list of new and exciting experiences, we may look for quiet moments of joy. As Naz reminds us, vulnerability and strength are two sides of the same coin: you cannot have one without the other.

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 our public Facebook page.