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.

Weekly Discussion Summary ~ Impact on sexuality and sexual health

The impact of breast cancer on sexuality and sexual health is a taboo subject for many women.

Here at BRiC, we tackle the most painful and sensitive aspects of our experience of primary and secondary breast cancer. In this week’s discussion, we shared how our sex lives have been affected by breast cancer, for the most part in painful ways. 

For many of us, this was the first time we had shared our feelings and it became clear that a huge number of us are suffering in silence and have no idea where to turn for help.

Breast cancer fundamentally changes us, mind and body. We may lose our breast or breasts, we have scars, we may be unsymmetrical, we may have chosen or have been unable to have reconstruction. For many, breasts are powerfully associated with womanhood and sexuality. Is it any wonder that our sense of ourselves as sexual beings is profoundly altered?

Our confidence and enjoyment of our bodies is shattered by brutal treatments like radiotherapy and chemotherapy, but we also contend with early, severe and prolonged menopausal symptoms as a result of hormonal treatment. These effects often worsen and are impacting us years after the end of so-called active treatment - many of us shared that we experienced a loss of libido, others talked about vaginal dryness which can make intercourse painful. Some of us shared that intimacy is the time when we most miss our breasts, maybe we miss the sensations we used to experience, maybe we miss our previous abandon, maybe we feel inhibited or undesirable as a result of our weight gain. Though our individual concerns varied, our feelings were startlingly similar:

Some of us fear intimacy, we avoid it.
Some of us crave closeness and intimacy but are afraid to initiate it.
Some of us feel single even when we are in what appear on the outside to be ‘happy’ relationships.
Some of us are single and fear having to build a relationship with a new partner and so we choose to remain on our own. 
Some of our partners have walked away from us, leaving us abandoned and alone. 
A few of us experience strong sexual feelings which our partners do not seem to reciprocate.

Very few of us had received any medical or psychological support for these issues. Sex is not mentioned or talked about when we ask about the side effects of treatment. No help is offered. 

We often have no one to confide in and we especially don’t want to talk to our partners - we fear their responses or rejection. We may drift into a sexless relationship, trying to pretend to ourselves that it doesn't matter while we silently die inside. So many of us who had enjoyed sex pre-diagnosis found our womanhood stripped from us by cancer.  

We worry that without sex, our partners may seek it elsewhere. Some of us have sex for our partner's sake but we don't enjoy it. For some, our partners are our carers and are no longer our lovers. Then, comes the expectation for a return to normal only to find loss.

Satisfying sexual activity was experienced by a few of us. We shared that trust, communication and sharing vulnerability and experiencing intimacy in new ways had helped. But the few of us who shared our success stories were hugely outnumbered by those with ongoing difficulties.

What can we do?

Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…
. 

This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, also offers lots of advice 
http://liz.oriordan.co.uk/BreastCancerBlog_files/lets-talk-about-sex.html

Her suggestion is to have a “box of tricks” including a good lubricant. Some are available on prescription so we don’t need to pay for them. 

YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants. 

Another popular product is SYLK. 

We also know that coconut oil or Vitamin E oil can be helpful. 

A small vibrator can help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.

In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - available for women who experience this symptom as part of their menopause - she says that one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation.

A good shop that comes highly recommended by a psychosexual counsellor is: 

“Sh! is a sex shop truly worth shouting about. When it opened in 1992, Sh! was the first ever ‘women only’ erotic boutique, designed to give ladies a welcoming, safe place to shop for intimate items and get sound sexual advice.”

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 message via our Public Facebook Page.

Weekly Discussion Summary ~ Tamoxifen

What is the effect of Tamoxifen (and endocrine therapy) on cognitive function?

This question, asked by one of our members, formed the basis for our weekly discussion.

Although we’ve previously looked at ‘Chemo-brain’, this was our first discussion about the varied effects of endocrine therapy, in particular Tamoxifen, on our cognitive function.

Tamoxifen is described as ‘well tolerated’, particularly in comparison to harsher treatments like chemotherapy and radiotherapy. While there is no doubt about its efficacy as a treatment for hormonal breast cancer, our members, women with primary and secondary breast cancer reported a wide range of debilitating physical side effects including joint pain, disturbed sleep, fatigue, hot flushes and sexual dysfunction.

Some of us also reported that these effects increased or decreased depending on the brand of Tamoxifen we take.

In terms of the effects on our cognitive function, we shared the following symptoms: a foggy brain, forgetfulness, poor concentration, lapses in attention; many of us experience slow processing speed and difficulties in relation to retaining information, particularly our short-term memory, our 'working memory' by which we mean holding one task or piece of information in our mind while completing another task, and, with our 'executive function' which is 'the CEO of the brain' because it involves those skills which allow us to set goals, plan and get things done.

Sometimes our mistakes are small and we laugh at ourselves, but more often our confidence gets undermined and we worry about our ability to function, that we might be seen as incompetent at work or that we are poor company.

How we asked, does Tamoxifen work, and how does it impact on the brain?

Naz explained that Tamoxifen inhibits the absorption of estrogen to cells that would otherwise be nourished by this hormone, especially brain cells which need estrogen for healthy cognitive functioning.

She told us that there is evidence that frontal and temporal structures of the brain are affected most. These areas are involved in everyday memory, our executive functions that enable us to ignore distractions to focus, switch between tasks and update information in working memory.

Tamoxifen, Naz explained, has also been known to interrupt “neurogenesis” which refers to the process by which the brain forms new neural connections and re-generates itself.

Naz told us that overall, research conveyed the simple message that Tamoxifen can contribute to impaired cognitive function. While the evidence can be mixed at times, the general story conveys a similar message in both post and pre-menopausal women.

Aromatase Inhibitors have been compared in their effects on the brain to Tamoxifen and the effects are similar, though the general idea is that they have less of an impact than Tamoxifen.

Naz told us that the longitudinal effects of Tamoxifen are unknown. Although some women report their cognitive function improves over time, this needs to be accompanied by systematic changes in the brain that at the moment have not been substantiated. Changes in cognitive functioning should be explained by changes in the brain that support those observations.

We know that the brain shows under-activity in areas that support healthy cognitive functioning when active treatment ends, but then at times it has shown over-activity to recruit resources that are needed to support daily functioning. Ultimately, more research is needed to see what we can do to keep the effects of Tamoxifen and/or Aromatose Inhibitors on cognitive function to a minimum.

We may not be able to reverse their effects, but we can boost our brain’s capacity to protect itself against the extra possible effects of Tamoxifen.

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 via our facebook page https://www.facebook.com/resilienceinbreastcancer/