Our Diet

 

"So, have you introduced more greens in your diet, since diagnosis?"

In BRiC we have had interactive discussions around how diet may or may not be related to breast cancer. How our diets may have influenced our likelihood for diagnosis, and whether feeling that we have control over our diet post diagnosis can help us stay healthier and lower fear of recurrence and metastatic diagnosis.

    The sad truth is that breast cancer takes away a lot of control over how we can build for a better quality of life. Diet is one of the very few ways we can feel like we are taking control back. It is therefore a hot topic: many books are written, many blogs and cancer sites are produced to showcase the potential for so many different diets: low or high in, sugar, fat, protein, and greens, to pave their way through our lives.

    The story however isn’t that simple. Many of us talked about how ‘fit’ and ‘healthy’ they were PRIOR to dx. Some were vegan, some never drank alcohol, some were super fit climbing mountains, running marathons, and there were others who believed they did eat and drink in ‘moderation’.
    

    It is puzzling therefore to try and sketch a direct relationship between diet and breast cancer. This in itself has caused many of us much distress as well as confusion over what we should or should not include in our diet post diagnosis. Thoughts of ‘could’ve, ‘should’ve’, run through our heads and sometimes the stress of feeling that we are not including the ‘right’ thing, or not eating enough ‘broccoli’ is too much to bear.
    

    Many of us reported how feelings of guilt weigh heavy, that it was somehow our fault. Now, if we do have a slice of cake, or chocolate, we are eating too much sugar. If we do have a glass of wine we feel guilty; if we have red meat we can feel guilty, if we aren’t eating enough greens… and the list continues. Feelings of guilt and self-blame are key risk factors for depression, which many of us suffer from. It gets worse of course when others question us on whether we are keeping an eye over what we eat and drink.

    
    Breast cancer is a multifactorial disease, and one of the most complex cancers. Whilst many risk factors are identified, no cause and effect has been established. There are many genetic factors that interact with environmental influences that may or may not involve diet. A ‘healthy’ diet we agreed involves eating and drinking in moderation. A healthy diet yes is key for building psychological and physical well-being. It is not healthy however to stress over what we eat and drink.
    

    Diet is about self-compassion too, nourishing ourselves and yes, if we want to, have some delicious chocolate.

    Our diet interacts with our physical and psychological well-being, influences hormones, cognitive function, and most of our organs, including the brain. So, it is perfectly reasonable to think that diet can have a direct effect on cancer diagnosis and progression.

    However, Naz told us it has been very difficult to substantiate a direct and causal influence of diet on cancer diagnosis and/or cure because the way in which diet affects individuals so differently, depending on our genetic make-up and environment. At a molecular level it is easy to substantiate with much certainty the effects of certain foods on physical well-being, but, when it comes to epidemiological research, it is hard to derive conclusive results because of history, natural variation in physical make-up as well as environmental experiences and influences.

    This mixed approach leaves us in a confusing position. Most of us would like to believe that good nutrition will help us, however, there is often a lack of clarity and agreement over what constitutes 'good' nutrition.

    There is an extremely wide variation in our views - some of us follow a vegan diet, others, a ketogenic diet, others avoided dairy products or foods associated with oestrogen. Individual members reported significant improvements in their health and well-being, including a reduction in tumour size as a result of changes made to diet, even though different diets were followed. Weight gain - and loss - as well as fatigue due to treatment was a consideration, impacting on our confidence and self-esteem and we also talked about our views on alcohol. However, our over-riding concern was how we could support our health and well-being while enjoying a quality of life, given the challenges we face, impacted by our unique experiences and perspectives.
    

    We considered that irrespective of cancer, the 'food industry' is loaded with media claims advertising foods, including both specialised diets and therapies. Naz explained that while there is no substantiated evidence to back up the use of specialized or alternative diets, there are anomalies in traditional medicine, even though this is the predominant and scientifically accepted approach. Naz suggested that the absence of evidence does not mean evidence of absence.

    As a group, we were able to respect each other’s diverse views. We considered that given that as we currently do not know the effect of diet on cancer prevention and cure, it seems reasonable that we support one another to have the confidence to act on our own informed views about what each of us considers the best way we can support our physical and psychological well-being.

Our Children

 

“Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden, others might express their feelings through challenging behaviour”

 

    Whether our child is a toddler, young, in their teens or grown-up, we reflected that telling our child or children we had breast cancer was perhaps the hardest thing we have ever had to do.  There is guidance a-plenty, both scientific and anecdotal, but at the end of the day each of us makes our own agonising choices about how much, or little, to tell our children, and how much, or little, to involve them in our treatment.

 

    It was clear that deciding what, when and how to talk to our children about breast cancer felt like an enormous task. Whatever our diagnosis, we had in common our desire to try to do the best for our children. Above all, we want to protect them from the fear and uncertainty that cancer has ushered into their lives. If we can, we want to retain as much normality as possible within family life.

 

    Mothers with secondary breast cancer face the added challenge of how much to share about the nature of secondary breast cancer, which can be treated and managed, sometimes for many years, but can’t be cured and generally involves ongoing treatment throughout their lifetime. All while dealing with their own shock, fear and, in many instances, anticipatory loss. Making memories and sharing as much joyful time as possible becomes of paramount importance.

 

    What we decide to tell our children depends on their age, personality as well as our own values, beliefs and family dynamics. Many women choose to tell their children as much as possible, believing that complete openness and honesty is the healthiest way to help them cope. Some had actively involved their children in their treatment, taking them to appointments to talk to the oncologist and to be a part of treatment.

 

    We learned that we can over or underestimate our children and we may be surprised at how they react. Some of us shared that our children had dealt with our diagnosis well, becoming involved in treatment. Others shared alarm and distress at witnessing their children's reactions - including distress, withdrawal or angry outbursts - as they try to grapple with their feelings and cope with the reality of a mother who has cancer.

 

    Some of us talked about the devastating impact of our own experiences as children, when illness and death was less talked about, and how we had lost our parents without any adults explaining what was happening. These early experiences shaped the way we approached telling our own children, bringing back painful memories as well as the chance to correct the past.

 

    Some of us decided that a young child doesn’t need to know, or, we offer a simple explanation which we can come back to as our child grows and develops. Older children can choose to do their own research which poses the dilemma of how much to tell them.

 

    Younger children can be remarkably resilient, but many may find themselves bewildered and unable to articulate their feelings when mummy is poorly and can’t do all the things she used to do. For some, a mum who loses her hair may be frightening; others appear to take it in their stride.

 

    Older children may be better at hiding their fears and this can be worrying for us, particularly if a child refuses to talk about it once they’ve learned about their mother’s diagnosis. They may also feel embarrassed by our hair loss and the reactions of peers can be an added pressure. 

 

    Naz told us that research shows that teenagers whose mothers are diagnosed with breast cancer often react with confusion and mixed feelings. They often feel torn between wanting to help and wanting their own lives. They may worry that they are more likely to get cancer now, or be afraid that they will lose their mother and wonder what will happen. A main finding, Naz shared, was a tendency to internalise feelings which can mean higher rates of depression and anxiety in teens with parents who have cancer compared to those with parents with ‘no cancer.’

 

    Feelings of helplessness can lead to avoidance in our teens, both of us and of the feelings. This was something that many of us could relate to, with teens (and younger adult children) showing little outward reaction. A teenager is old enough to understand on some level but may not be confident enough to ask questions and articulate their fears.

    Our discussion, which included women with primary and secondary breast cancer diagnoses, highlighted our huge worry and guilt about the impact of on our teenage children. It’s easy to blame ourselves and our illness for wayward teenage behaviour, and many of us felt we had let our children down.

 

    If we can, crying together can be a release, with many sharing that this had helped their children to dust themselves down and carry on. Many children do cope well and adult children can become a rock of support, but others pull away and withdraw. Many mothers reported trying to keep the worst of their pain away from their children once they’ve told them for fear of upsetting them or making them anxious.

 

    Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden. Others might express their feelings through challenging behaviour - either at home, or perhaps at school. Effects can be long-lasting, or ebb and flow, triggered by transitions, news items or bereavement. Many schools, we heard, offer support, some in the form of counselling, and some women found it helpful to let teachers know of their diagnosis.

 

    There is a selection of age-appropriate literature available to help us and many women used these materials to supplement their conversations. These publications also help us to communicate that we are not alone, that breast cancer is happening to lots of women and their families. Humour can be helpful at times too as can joining in fundraising. Asking close family friends, aunts and uncles to keep a special eye out for children and to be confidantes if they needed a shoulder or a listening ear can also be supportive.

 

    Guilt and depression are common emotions. We want to be careful not to pass this on to our children. We can feel it is somehow our fault that we got cancer and we are to blame for causing anxiety in our children and potentially leaving them too soon.

 

    It can also feel unbearable to contemplate our child's future without our presence and care. Some had wondered whether it would be better if cancer took us quickly, while our children are too young for it to register and without a long, drawn-out period of illness. But this, we realised, was the voice of our depression and overwhelm. We all want to see our children grow up, to guide, support and love them. We all want to see our children achieve major milestones.

 

    “They find it difficult to express their emotions, and the lack of professional support is unbelievable”

  

    If we feel that our children are really not coping, who can we turn to?  This is where things start to fall apart and extra support is patchy at best. We heard that some schools offer great emotional support for their students. Many do not and sadly, we heard, some make the situation worse. There are very few charities that offer extended support to families after a cancer diagnosis, but even if you are lucky enough to know of one, there will probably be a waiting list. Unfortunately, that’s not how mental health works. The need for support is often immediate and distressing for all involved and should be treated with the same urgency as, say, a broken leg.  But with mental health resources so thinly spread, what chance do we have of getting ourselves and our kids through the cancer journey relatively unscathed? If we have trouble adapting and grieve for our old lives, then how are our children supposed to navigate the same emotions on their own? While going through our own trauma we can only help them so much.  We all agreed that support for them should be proactive and automatically offered on a set pathway as part of our treatment plan. Even a moving-on group aimed at families would be a start. Cancer has a ripple effect on everyone in our lives and we need to strive for better support for all who need it. As adults, we know that many of our mental health struggles started in childhood, so how do we break that pattern for our next generation?

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.