Our Partners and Families

 

“The impact on my family and parents when I was diagnosed with breast cancer at 34 was enormous.”

 

Breast cancer affects our children, partners, parents, siblings and wider family relationships.  We were not surprised that our discussions raised many mixed and diverse experiences when it came to how our cancer had affected our family, our friends, and our children. One thing was certain though: that the huge emotional toll is there for them, too.

 

    Husbands/partners were thought of being excellent with the practical side of things. Some of us talked about how good they were with the housekeeping, hospital appointments and shifting work to be present with us during treatment and so on. Equally though, this dissipated with time, such that as time moved on, they had had enough and believed that we should be cured, that they were ‘tired of doing everything’, and that we were lazy. Others not so much, they continued to worry about us, they continued to be our rock. It was agreed that the emotional stuff was harder for them to deal with, and their reluctance to talk and open up, made it harder for them to cope. We heard about depression and suicide attempts, we also heard about partners leaving and shutting us out.

 

     The period at the end of treatment is a crucial point for women with a primary diagnosis as partners expect and want things to return to 'normal', to be as they were before the diagnosis. This return to how things were isn't going to happen and it can cause rifts in even the strongest of relationships.

    Our partners play an important role in helping and supporting us with breast cancer. More than this, irrespective of whether partners ARE or AREN'T supportive, they also need support and psychological care, in their own right. Not only would this help partners to address their own needs, but would also help us, because we could be more open about our feelings, and this in turn fosters healthier relationships.

 

    Those partners who did have support did a better job at supporting us with breast cancer, and this lowered psychological distress as well as depression for both parties. It was a challenge to consider how our cancer experience has affected our partners' emotional wellbeing, because our own needs can feel so overwhelming, however, the research concludes that partners deal better with the breast cancer diagnosis if they receive some kind of psychological assistance, even if it's just a friend or family member to talk to.

 

    It can be very hard to talk about our cancer to our parents, especially if they are elderly. In fact, we’ve avoided it if they are in poor health themselves or suffer from their own vulnerability. For some of us, our mums saw us through treatment, for others our parents abandoned us, either finding it too hard to deal with, and not wanting to discuss it. Because of this belittling effect, some found it easier to distance themselves from their parents. For many, our immediate family did not want to hear that our cancer is ‘ongoing’. Sisters and brothers are important, but again we spoke about how some had abandoned us and/or were not interested in supporting us. The opposite was true as well, with many reporting that their siblings were there for us through thick and thin.

 

    Whether we have primary breast cancer, a recurrence, or secondary breast cancer was important - some individuals and families had coped well during one bout of cancer, but then struggled further on. Other factors included - whether we were single parents, had caring responsibilities ourselves, for very young children and elderly parents, and some of us felt a strong sense of responsibility to protect them from the burden of our illness.

 

    We acknowledged that for those of us with secondary breast cancer, it can be harder to communicate as pressures can run high for our immediate family. Some of us talked about how reading through our blogs can help them understand how we can be supported.

 

    A universal concern in the group was the potential impact of breast cancer on our children, particularly young children, those with vulnerabilities and at transition points. We heard about the different ways younger and older children expressed their feelings - some, but not all asked questions, or talked about their fears, sometimes behaviour was challenging; some struggled with school or academic work; some support and care for us.

 

    Our relationships are far-reaching and we wanted to include our friends in this discussion.  We were genuinely grateful for friends who travelled long distances to visit and support us, pleasantly surprising us with kind gestures. Our members were grateful for having found BRiC: their BRiC family is who they go to. Moving forward courses and other support groups are valuable too.

 

    We concluded that just as much as we need emotional support, our partners, our children and our immediate family need educating and emotional support so that they can care for themselves and us, cope better as well as know how to support us better. They can be better prepared for us and our needs and consequently they can feel stronger in supporting us, and not abandoning us. Hopefully research will emphasise this important point so that we can provide better support for our families.

Antidepressants: To Take or Not to Take?

 

‘Asking for help when you need it is not weakness, it is courage in vulnerability’.

    Our discussions have been lengthy on the use of antidepressant medication (ADM) in alleviating side effects of ongoing cancer treatment such as tamoxifen and aromatase inhibitors. Our members talked about a variety of situations where they had experience of taking ADM, both directly to target unwanted side effects and as a medication to treat depression and anxiety. A cancer diagnosis can lead to low mood and depression of itself, and taking cancer drugs can affect both physical and mental wellbeing, leading many of us to seek help from medical professionals.

    Many of us find it irritating that we have to take further medication to counteract the effects of the primary medication which is treating our cancer or helping to prevent recurrence or progression. Our membership is made up of women with primary and secondary diagnoses of breast cancer. Once active treatment for a primary cancer is complete, many women take medication which may prevent recurrence, and the side effects may be debilitating for some. When quality of life is compromised, we seek help and are often prescribed ADM to help with joint pain, hot flushes or low mood. For those with a secondary diagnosis treatment is ongoing and again, quality of life is a goal which may be enhanced by tackling unwanted side effects using ADM.

    For some women, the side effects of cancer drugs impede quality of life to such an extent that they decide not to take them. If we had more information about how ADM might help us, and support from our medical professionals in finding the right pill and dosage, then we might be able to take the protective medication we need without quality of life being compromised. It seems it’s often up to us, the patient, to ask for a particular drug to treat a particular side effect, having done our research or listened to the experience of others in groups such as BRiC.

    Several of us have taken ADM to treat depression, both before and after cancer. The general consensus is that tablets have their place, but work better alongside good quality talking therapy. They can be helpful in the short-term to get us through grief or trauma. Some of us saw ADM as a last resort after having resisted taking them, but resigned ourselves to giving them a try when other options failed to lift us out of depression. As one member put it ‘Taking this kind of medication is a big decision, but I think you know when you’ve exhausted all other avenues and it’s time to give it a go.’ For a few who have felt at rock bottom, ADM has been a life saver. ADM can help to lift mood and disperse brain fog, some feel numb to all feeling, others just generally feel more cheerful. Others are adamant that we will not take ADM, and continue to seek other avenues to help. Exercise, good nutrition, yoga, mindfulness, all can be helpful in lifting mood.

    There is a preconceived idea that taking ADM shows weakness, it’s a bit of a cop out. The stigma of taking it is widespread, the view is that we should be able to cope with whatever life throws at us. Cancer has made many of us realise that this just isn’t true. Asking for help when you need it is not weakness, it is courage in vulnerability. It is awesome strength and bravery. If ADMs help us through, then they have their place. However it is worth remembering that many of us suffer worse side effects from the ADM than from our original medication, and research shows that roughly only half of the general population respond positively to ADMs. It is not entirely clear exactly how ADM works, they appear to operate on the neural pathways in our brain that control emotional regulation; it is also unclear how our brain’s natural plasticity is affected once we stop taking the ADM and our brains return to ‘normal’ functionality. There is also an issue with long-term efficacy and lack of review, with many receiving a repeat prescription over and over without any consultation as to whether this is the right thing to do.

    A worrying theme is that talking therapy to treat depression is not always available immediately. Some cancer centres offer support and many of us seek help via our GP but there can be a long waiting list. Taking ADM in the meantime can be a short term fix, but it would be far more helpful if counselling was more readily available in a timely manner. As one member put it: ‘I think so many women’s symptoms are dismissed with antidepressants rather than being properly investigated.’

    ADMs can cause challenging side effects themselves, one of these being a detrimental effect on sexual health. Some of us worry about dependency issues, and they can be difficult to come off without adverse side effects. However this is not always the case, as some of us reported coming off ADM quite smoothly without support.

    Some of the old fashioned ADMs are used in low doses to help with nerve pain, which can be a problem after chemotherapy. Our members had mixed success with these, some finding them a life saver, others finding the side effects intolerable. There are many different types of ADM and it can often be trial and error to find one which suits.

    A few of our members have questioned taking ADM alongside tamoxifen, letrozole and other AIs because there has been some research suggesting that the ADM may reduce the effectiveness of the cancer drugs. This possibility can cause further anxiety and make it difficult to decide whether to take ADM as well as cancer medication. As cancer patients we may have to do our own reading to find out more as this is an area where our GPs and oncologists may not be fully up to speed. BRiC is a group which is helping so many women to find the information we need to ask the right questions, weigh up the pros and cons of different medications, and to seek and receive supportive treatment, which may or may not include taking ADM.

    There is a view that antidepressants are prescribed too routinely as a simple option, with not enough focus on alternative approaches to treating depression. However, many of us felt they are part of how we practice our resilience by being aware of our choices and by researching different approaches. For those of us who choose to take antidepressants, they may be a useful short term solution to negotiate the bumpy ride that is a breast cancer diagnosis, or in the longer term, an effective aid to optimum functioning. Others choose alternative routes to wellbeing. Whatever we choose, we decided, it’s 100% ok.

A Holistic Approach?

 

Do we think that we are holistically treated during our breast cancer treatment, by our medical teams, or was it just an illness that was treated?

    Naz opened up this very thought-provoking topic and explained that it hits a chord with her, because of the connection between the brain and the body. If breast cancer is to be treated using a holistic approach, then the patient’s individual needs must be assessed and catered for, with treatment offered to cover both physical and psychological aspects. If our wellbeing is not addressed alongside treating the actual disease then we may not fully recover physically as quickly or as thoroughly. Breast cancer is a life-threatening disease that affects our identity as women. Treatment and its after-effects can impair quality of life. For women with secondary cancer - and our group embraces women with both a primary and secondary diagnosis - a holistic approach is even more important as quality of life becomes paramount in ongoing treatment. A holistic approach treats the person first, not just the disease.

    There is a general consensus in the group that the main focus is to get rid of the cancer, which of course is very important, but as the cancer may be “toast” at the end of active treatment in a primary diagnosis, so we are expected to start a long journey of ‘recovery’ and ‘moving forward’, learning to adjust and live with ‘the new normal’. We are expected to return to our lives, our families, our work, functioning fully as we were before diagnosis. Those around us add extra pressure as they encourage us to keep our chin up, to be strong, to keep smiling, to think positive. We are often made to feel that we should be grateful for our treatment, grateful to be alive. However surviving breast cancer is more than just physical recovery.

    A recurring theme amongst our members’ experiences was being abandoned at the end of primary treatment and told to just get on with it. Many of us were given leaflets telling us the facts about our disease and treatment, but very few felt listened to and understood in terms of our ongoing wellbeing. Most of us have found we need to seek out knowledge and reassurance, information and support, rather than having it offered to us. Bewilderment regarding our treatment was common, and finding supportive oncologists and nursing staff is rare. Many of us felt unprepared for our treatment, for surgery, chemotherapy and radiotherapy, and for the ongoing medication that keeps the cancer at bay but causes so many debilitating side effects. We feel like we’ve been on a conveyor belt, with boxes ticked until we are shoved off the other end and on gets the next poor person.

    Many of our members felt that there was no attempt to listen to our wishes. At the initial appointment, we were often told that the medical team won’t know anything so there isn’t a need for someone to be with us, but then we find ourselves alone when we are told that it is definitely cancer. We had lots of examples of decisions being made without consulting us. Our family and partners are not told what is going on and are left in limbo, and of course they are unable to support us without information. We are told to contact our Breast Cancer Nurses for help, but they are often too busy to speak to us. There is often no continuity in who we see, and no-one asks as how we feel. We continue to be treated like objects with no voice or views about our bodies and what’s best for us. As one member put it, ‘I often felt like a tumour on legs with a few useful veins attached’. So many members are left with traumatic memories of conversations with medical teams where we felt lost and cold and uncared for. Many have traumatic memories of incidents in hospital where we felt exposed, vulnerable, helpless. We were sent away and told to contact our GPs with any problems, many finding this an impossible route for support as GPs do not have any specialist knowledge of breast cancer.

    With a secondary breast cancer diagnosis there is rarely a holistic approach, in fact quite the opposite, the care can be completely focussed on the physical, the pain relief, the drugs to keep the cancer at bay. Women with secondary cancer do not want be written off, we have the right to a better care system. It’s gut wrenching to be told that we can’t be cured, and psychological support in dealing with the mental crisis this presents is absolutely paramount, but sadly lacking. The breast cancer care system appears to be set up entirely to support primary cancer, with few specialist nurses or support for secondary cancer patients. Many of us turn to hospices for support, and we do find a lot of help there, but it may be challenging to push for referral, often due to lack of communication from our medical teams. Many of our women with secondary cancer have become strong advocates for our own care and unselfishly fight for better care for others in the same boat. Many of us have raised complaints when we have been badly treated, and we hope that this paves the way for improvement for those following us.

    Lockdown has made the situation even more difficult, as the support we would normally get has disappeared or gone online, this in itself excludes those of us who do not have the technology to access such information. Complementary therapies and face-to-face courses and support groups either shut down or were replaced by online offerings. Reviews and appointments have been done by telephone and we’ve had to attend appointments alone without the valuable reassurance and support that being accompanied brings.

    A few of us have been lucky and have been supported by holistic cancer support centres, where we have found people to talk to and where complementary therapies have been available for free. Reflexology, Reiki, mindfulness, advice on diet and exercise, all these things are crucial to our wellbeing. Some of us have been offered counselling and have found it helpful but it is usually limited in both length of time and scope. Some of us have had supportive caring oncologists and breast care nurses who have made the time to ensure we feel confident about what is going to happen to us during treatment, and who have helped us to understand how to look after ourselves. Unfortunately these good examples are rare.

    Many of our members have turned to our BRiC group for help and have found the support and information available invaluable. For many, BRiC has provided the holistic lifeline: the place where women are listened to and heard, as a whole person not a broken cancer patient.

    How sad it is that still this disease is not managed in a truly holistic way for the vast majority. The focus is to treat the cancer and move us on. We believe that excellent holistic care and support, including access to complementary therapies, should be made a priority for everyone who has had a breast cancer diagnosis.

Planning for the 'future'

 

To plan, or not to plan?

Cognitive processes are very much involved in planning for the future - making predictions, being insightful, calculating the possibilities and probabilities of outcomes and managing reasonable goals within the time-frame we have in mind. Following a trauma such as cancer, these processes can be impaired as uncertainty dominates, making us apprehensive. 

    Some of us described a reluctance to plan, often due to fatigue leading to a fear that plans will be cancelled, as we don't like letting others down. Fear and uncertainty about our health in the future leads many to look only to the short term, with many planning in small chunks around check-ups. We feel frustration that we can't do as much as we used to, but conversely many have stopped putting things off and are packing lots in to every day whilst also scheduling holidays, concerts, days out and family time. A few have embraced living in the now and retired, planned big holidays, moved house. Others feel life is passing them by. 

    

    Some of us have always been planners, others more 'go with the flow'. All of us described feeling differently about our future after our diagnosis of breast cancer, although whether we have a primary or secondary breast cancer had significant implications. We wondered whether the key to future planning is to live for each day but look to tomorrow as well, to ensure that it is planned to an extent that provides us with the activities and lifestyle we really want. As one lady put it 'I have very little power over the future and all there is now.' 

    

    But, Naz explained that while being in the ‘now’ is good, we are evolved to be goal oriented and to hope for a bright future, to have hopes, dreams, desires and objectives. Our tough challenge is to hold on to and strive towards our dreams whilst accepting that we have little control over the outcome, and, it is this acceptance that is so very hard for us all. 

Finding the 'New Me'

 

We have explored the ‘positives’ and ‘negatives’ of living with cancer and its effects and the challenges of understanding the ‘new’ me.

We began by asking some challenging questions:

Should the cancer have changed me? For the worse AND better? 
What should my ‘profile’ look like? Stronger? Weaker? Both? 
If both, then how can weak and strong live together in harmony?

    Naz explained the huge role working memory plays in our everyday lives and how our responses to cancer can lead to cognitive interference as our working memory is dominated by our vigilance. She believes we need to build resilience. This allows us to develop cognitive flexibility by finding a lightness within our fear and sadness. Bringing together the 'good' and the 'bad' can lead to a new normal which can be special and complete. 

    Our responses were diverse: some spoke of physical challenges, and our points of view were partly shaped by whether we were recently diagnosed, living with 'no evidence of disease' or whether we had a secondary diagnosis. We agreed that whether we like it or not, we are not the same, we have changed bodies and feel different. Some of us described feeling comfortable with our new selves. Some of us feel anxiety and fear, a sense of loss and grief for the person we once were. Many of us described seeking new opportunities and discovering a new zest for life, even while experiencing sadness and loss. 

    While we could acknowledge that we are different, accepting our new selves is another matter. Many of us experience fatigue, but are reluctant to admit our physical struggles as we don’t want to appear weak, especially at work. The fear of recurrence is strong, but can also be a driver for positive change leading us to adopt a 'can do’ attitude. Many harness this to make life changes, and others say they’ve stopped planning for retirement, preferring to live life now, spending more freely to enjoy the experience of being alive and taking more pleasure in the everyday. 

    Some of us look back and cannot relate to who they were before cancer, we are perhaps more emotional, sensitive and empathetic now. Some days we find ourselves grieving for our old selves, we feel lost and want to hide away. Some days we feel strong, we can take on the world. The challenge of being on this rollercoaster is to bring these extremes into balance. 

    We learn from cancer that we need to live now. As one member put it: ’The old me was worried about getting old, the new me is scared she won’t get to.’ 

    Our overall discussion concluded we are undoubtedly changed. We are weak, AND we are strong. We are darkness AND we are light. We are sad AND we are joyful. 

My 'New Normal'

 

"The "new normal" also means facing a new reality. One which we didn't choose."

What is the "new normal" after a diagnosis of primary or secondary breast cancer?

This has been discussed to length in BRiC's support network.

    People tend to speak of the "new normal" in relation to the process of adjusting to life after a cancer diagnosis, often when active treatment has finished, when the physical demands on us have receded somewhat, allowing us time to reflect and to "find our new normal."

    In our experience, the phrase "new normal" is actually an ambiguous term used to convey somewhat contradictory ideas - firstly, a fresh way of being, suggesting the idea of a new start, and secondly, the process of adjustment to a reduced or more limited way of being and learning how to manage the different roles that make up our identities.

    Our discussions, which have included women with primary and secondary breast cancer, highlighted that one aspect of our "new normal" meant living according to our changed values, changed health, changed energy, perhaps with a new appreciation for what was important to us, and was coloured by gratitude and opportunity. It was idealistic. It was fruitful.

    The kinds of things we might hear or say to ourselves from this perspective are - "You must really appreciate your life now." "Go and be happy." "You have a second chance." "Make the most of your life."
However, this is just one part of how we feel. Alongside our desire to make the most of our life and explore new opportunities, we are also often dealing with ongoing side-effects, and, anxiety about recurrence or progression of disease. Some of us were also dealing with particularly challenging physical and psychological side-effects as a result of treatment, or secondary breast cancer.

    These different factors meant our actual experiences of "normal" were a bit different. Some of us felt we had lost sight of what "normal" was any more. Others of us experienced a gap between what we expected or hoped for ourselves, and our new reality. Some of us were striving to return to previous ways of being, such as resuming careers, whilst others had been forced to make significant changes and the "new normal" meant a new home, job or relationship.

    Naz explained that psychologically, the new normal is a hard process of establishment, to try to reach some kind of stability that is inevitably still evolving through time. We have changed, yes, but the changes are not a means to an end and are ongoing and evolving.The "new normal" is not static but is a dynamic process and at times we can feel at the grip of forces outside our control.

    The "new normal" comes with gratitude. We have insights and a belief that we can get the most out of every day. It can bring opportunities that only we can appreciate. Ones that make sense to us.

    The "new normal" also means facing a new reality. One which we didn't choose. It brings limitations that beg us to dig deeper, either to do the things we once took for granted and are now a struggle, or, to make changes so that we can continue to function meaningfully in our our lives. We have to learn how to make things work for us within the changed frameworks we have.

Are we more challenged?

    Yes we are. We face challenges that are tough to handle. Challenges that come with acceptance of our limitations and in tackling them. We continue nevertheless.

    We were not sure how to define our new normal. We decided we would not call it "normal" as it's unpredictable, a challenging normal and lacks stability. We thought one of the most appealing aspects about our "new normal" were our opportunities to challenge and change, for the better, and to recognise that we are ever changing.

Who Am I Now? A Poem

 

A beautiful poem by our former deputy head Anita Traynor.

"I stop, cry, look at the sky...'
Who am I now, after breast cancer?
I am thankful to be here
I am focused on what I want to achieve
I am lucky despite everything
I am stronger than I realised
I take nothing for granted
I find new challenges
I am determined to enjoy my leisure time
I am angry, fatigued, resentful
I am fuzzy, foggy
I am larger, damaged
I am my treatment and it is all consuming and I cannot see past it
I am lost
I live in fear
I am also fearless in some respects and feel as fragile as a newborn baby in others
I lose my breath
I am vulnerable and I have to disguise my vulnerability
I am a reduced version of myself
I am a master of hiding my true self
I am not sure what I am or what I'm for, the roles I held are filled
I try and do nice things for myself
I have increased self worth
I have permission to put myself first
I appreciate nature
I enjoy simple things
I am humble, compassionate
I am making precious memories with my family
I am no longer afraid to say what I feel
I have an enhanced understanding of pain, suffering and fear
I seek order and control
I like to say I am resilient
I listen to my body
I accept my limits
I know it's ok to cry
I am the same at the core in terms of beliefs and values
I don't push myself to do things I don't want to do
I have come to some sort of acceptance
I don't worry about tomorrow, it isn't worth my energy
I just try to live in the moment
I live, I laugh, I stand sure
I stop, cry, look at the sky, feel my breath. Is that me?
I am still working out who I am
I am under construction, a work in progress
I am me, the only one I've got."