Things I'd Wish I'd Known (1)

 

“I wish the team had told me that the recovery process would be ongoing”

At the end of active treatment for Primary Breast Cancer, we are all told to go and pick up our lives where we left off, but we are not given any clue how to go about it. In our BRiC Sunday Discussion we asked what people would like to have known or discussed with their team afterwards, if they’d been given the opportunity. The list is quite extensive;

• Detailed discussion about reconstruction options

• Psychological impact of a quick diagnosis, followed by complications

• What now, how to move on?

• How to cope with anxiety, depression and cognitive decline

• Why are MRIs not standard monitoring?

• How to process what has happened to you

• How your sex life might drastically change, becoming difficult or impossible

• Secondary cancer – risks and what to look out for

• How to manage fatigue and menopausal symptoms

• That the recovery process is ongoing

• The blue dye injected for my lumpectomy took over two years to fade

• More information about sentinel lymph node biopsies

• That I would probably never feel the same again

• Detailed information about surgery

• Support and awareness around neuropathy symptoms

• Information about a more holistic approach to being healthy

• One key person for support, rather than Consultant, BCN, Oncologist, etc.

• Physiological problems that can occur years down the line

• Information about PIP (Personal Independence Payment) which supports those of us left with disabilities

• Numerous ongoing side effects of all treatment

• How bad nerve pain could be from Axillary Node Clearance

• The possibility of more surgery and extended treatment

• Failure post-surgery to keep in touch with next of kin

    As you can see the queries and issues are varied and personal, ranging from questions about the treatment we’ve just received, to how to move forward and recover, and a wish to air complaints when things have gone wrong. Most of them are not the kind of questions you would want to bother a busy Breast Care Nurse with, but still, those unanswered thoughts play on our minds and prevent us from having a better recovery.

    The other issue that can affect us is that too much information at once can be a problem for people who are already struggling at the end of treatment. When you are only just coping with day-to-day tasks, your mind just isn’t ready to absorb lots of new information. Trauma can also make it difficult to speak up for yourself, especially when things go wrong with your treatment plan. Feeling completely abandoned with nowhere to turn can lead to depression, anxiety and suicidal thoughts.

    What is clear from this discussion is the complete lack of a support pathway. I floundered around for about six months post treatment. I sourced my own counselling through a local cancer charity and when that didn’t help as much as I thought it might, I drifted into awful, disruptive anxiety followed by deep depression.

    "I only found BRiC by chance, through a friend of a friend, and it has been my go-to support for nearly two years. Wake up at 3am with a question? No problem, the ladies on here would have me feeling buoyed and listened to by 7am! Had a bad day? Wednesday Wobble gave me a safe outlet where I wouldn’t offend anybody! The concept of this group, although based on rather complicated science, is amazingly simple. Mostly, we need somebody to listen, empathise and maybe have some practical input from personal experience. It makes such a huge difference when we feel scared and alone."

    So, what can be done to give everyone the opportunity to access this kind of support, without having to battle for it when they are at their lowest point? What is the point in the NHS spending thousands of pounds on treatment to save our lives, only to have us crumble into a traumatised heap afterwards? It seems their expectations of our recovery are at best optimistic and at worst negligent. And the ones that do care have no access to funding for us, even if they do want to help. A much different approach is needed to guide us and our families as we embark on the journey into our new, vastly altered lives.

The Experience of Joy

 

‘Joy: You don’t have to hunt for joy, manufacture it, or figure out how to lead a stress-free ‘perfect’ life. You can ALLOW joy to live alongside whatever else you’re experiencing. You can WELCOME it into the messiness of your life in every season.’

    This thought-provoking quote brought forward many different perspectives from our members. This idea suggests that we can be happy and sad at the same time, that we can experience negative emotions but still be content at our core.

    The idea that we can choose our emotions is an interesting one. Even in the midst of great pain or sadness, can we turn towards joy and select it, from outside us via joyful moments, events, or experiences, or from a contented secure peace of mind within? Can we reduce our pain by choosing joy over sadness? (much simplified in these words, of course, but in essence this is about active resilience, exercising the brain’s power to choose rather than be subject to random emotion.) If the brain cannot process opposite emotions simultaneously, then in a seesaw motion perhaps we can have some ability to monitor our feelings and to allow (accept, welcome) the emotions that are most beneficial to our resilience?

    Allowing joy into our lives is a practice, something that we can actively introduce even in our darkest moments. We can tip the seesaw towards finding joy regularly, whether we are feeling happy or sad, through resilience. Perhaps it is possible to ‘enable joy to arise and sadness to move to the background’.

    Many of our members pointed to finding joy in small everyday things, ‘breathing fresh air, a beautiful flower, a hug from a loved one or a smile’. Our minds are constantly full of thoughts, stemming from our emotional response according to what is going on around us or what is going on in our heads. Mindfulness helps us to become aware of this constant chatter and to be selective about what we allow in, and as a consequence, what we allow to affect our mood.

    Finding joy, for many of us, is about being focussed and absorbed in something that helps us temporarily escape our world, the trauma of our breast cancer diagnosis and the accompanying fear being all consuming at times. Physical activities and creative pursuits come top of the list as joyful experiences.

    A cancer diagnosis is traumatic and can be devastating, but without exception our members prove that it does not destroy us. On the contrary, it can lead to insight and growth. One emotion that we often talk about in our group is gratitude. This is something that can come naturally to us as we face our mortality, but it can also be nurtured and practised, and it can lead to an increase in joy and contentment. Some of us have experienced moments of deep joy even when in the midst of intense grief, following a bereavement for example. In the loss of a loved one, even when we are mourning we can still find joy and laughter in our memories of the life of that person, and we are reminded that the love we felt for them, and that they gave us, are part of what sustains us when we feel we can’t go on. Laughter is a natural stress reliever and can be a good antidote to depression.

    For some of us, choosing joy is easier said than done. We prefer to think of it as being open to finding light when it’s dark. Positive thinking in itself does not necessarily lead to healing (toxic positivity is a term we are all familiar with - being told to think positive and everything will be ok is NOT helpful) but we can help ourselves by actively looking for the good things around us and by believing that however bad things seem, there is always something good to be found every day if we look hard enough. Making a conscious effort to seek out joy rather than allowing ourselves to wallow in our misfortune is helpful for many of us. It takes work to be aware and mindful rather than letting everything wash over us on autopilot.

    One of our members pointed out that it was much easier to find joy as a child, before cares and worries became dominant in our adult minds. Perhaps becoming more childlike is a useful goal if we want to be more joyful? As one member put it: ‘Joy is a practice and a behaviour. It’s deliberate and intentional. Joy is an inner feeling. Joy endures hardship and trials and connects with meaning and purpose.’ It helps to recognise that all our emotions are fluid, we don’t just feel one emotion all day long, everything comes and goes.

    We can seek out the things that we know will cheer us up when we are sad, whether this is a hug from a loved one, a snuggle with a pet, a walk to our favourite tree - it will be different for each of us, but when we know what will make us feel better we can make sure to do lots of it. When we are physically and mentally depleted by breast cancer and other life events, we can find ourselves profoundly thankful for the simplest things such as the energy to take a walk in the woods or the appetite to eat and enjoy a favourite meal. This gratitude can lead us from pain to joy, or to joy amidst our pain. ‘Joy is in the heart and of the soul and it transcends.’

No Health Without Mental Health

 

What are the things that have helped build our mental flexibility and psychological well-being post diagnosis, and how have they benefited us?

    Seeking help to support our psychological well-being involved many pathways: from mindfulness meditation, exercise, yoga, CBT, acupuncture, reflexology, hypnotherapy as well as anti-depressants…. Naz told us that there is a whole diverse literature emerging, though sparse evidence has substantiated the effectiveness of complementary therapies.


    Importantly, the mechanisms by which they work are unknown, partly explaining why we haven’t been able to develop more targeted interventions. We do know that exercise releases feel-good hormones and the link between mind and body isn’t under dispute.


    The majority of those who took part in our discussion had sought support for their mental health and general well-being in some shape or form, and many have taken up new challenges and hobbies. Strong themes of taking control of health and fitness, peace of mind and well-being emerged, although with modification as many of us find ourselves unable to pick up where we left off at diagnosis in terms of demanding jobs and stressful lifestyles.

    
    Fatigue is an issue for so many, and limits energy and often the enthusiasm for high maintenance mental and physical regimes. As the trauma of a breast cancer diagnosis leads to a reassessment of priorities, so a measure of balance is often preferred to being over-busy. Learning to relax, rest, and perhaps meditate, is a huge challenge in our driven high-achieving superwoman society. The strongest message coming from the discussion is the desire to find what works, and to draw mental strength from it.

    
    A common story from our women is that while in active treatment they were coping well, moving from appointment to appointment, dealing with harsh side effects and adjusting to the fact of their diagnosis. Some worked through treatment as a distraction, others took time off, and for most it was just a case of getting through it. Once active treatment has finished and there is time for reflection, many women find themselves unhinged and vulnerable, unsure of themselves and their capabilities. Physical changes, mental fog, an uncertain future – all contribute to a particular type of post-traumatic stress.


    Our wonderful women have found, or are finding their way through all of this, and their strategies are as diverse and unique as they are. They run and write poetry, they meditate and try hypnotherapy, they learn mindfulness and create with glass. They take up dancing, learn to swim, have a go at art therapy, try yoga, Nordic walking or join a choir. They make jewellery, care for their children, or grandchildren, they walk in nature, read a book, write a book. Many of us described experiencing anxiety, low mood and some of us depression, and while medication has its place, it is interesting to note how many women were determined to deal with it by other means than medication.

    
    Counselling is a popular choice, though some of us had found it hard to access appropriate services. It was valued most when available via Macmillan or support centres and many found it helpful to have an objective space in which to process their feelings and come to terms with their experiences. It’s common not to want to share everything with friends and family for fear of upsetting them, and of course groups such as ours come into their own here too. Our discussion included women with primary and secondary diagnoses, and an important factor for our members with secondary breast cancer is to find activities which allow them to live their lives without being constantly reminded about cancer. We all relish ordinary stuff like hanging out with friends and family as well as seeking support from specialist organisations.

    
    What shines through our discussion is our determination and grit, our desire to find a new normal after diagnosis and to live each day as well as we can.

Practical Information

 

"To allow ourselves to be ‘weak’, to cry, to vent, to confide, is actually an important cognitive and emotional step towards recovery."

    Our discussion focused on the different ways we cope following our diagnosis with primary and secondary breast cancer, as well as recurrence, and how we get practical information and emotional support.

    They say that knowledge is power.

    This, we found, can be context dependent, although many of us had now reached a point where mostly, we preferred to know, so as to prepare and protect ourselves, irrespective of the amount of control we have over the outcome.

    Not knowing can be helpful too though. Some of us, especially at the point of our diagnosis with primary breast cancer, described feeling shocked and numb, and having chosen (or not felt able to make 'a choice') to rely totally on the knowledge and wisdom of our treating teams. It's only as these intense feelings subside, that we begin to open our eyes fully and see this new country we find ourselves in.
    

    Women with secondary breast cancer described the empowerment that came from being able to reach out using social media to get instant information from other women, based on personal experience of treatment possibilities when they had been diagnosed with progression. This was especially important given the complexity of treatment options and how finely balanced decisions can be, which meant that they themselves can have an important contribution to decision-making. Likewise, finding out about side-effects that aren't always mentioned by clinicians. Those of us who had experience of recurrence also found that in the midst of the fear and isolation we feel, peer support, the knowledge that we are not alone and that others have also walked this path offers hope in the darkness.
    

    Naz explained, from a neurocognitive perspective, how emotional and social support and networks are so important - talking and writing, unconditionally and freely, helps us immensely because it frees up and boosts working memory capacity. Naz told us that working memory helps us regulate and manipulate information which then gets stored by our brains. It is what she calls the supervisory system in the brain: it helps us practice what needs attending to, and what needs ignoring. When we exercise working memory through writing, or talking, or simply listening to other people’s similar problems, we free up capacity in our brians that would otherwise be filled up with worry, anxiety, apprehension and fear.

    We become more emotionally stable and feel a bit relieved (like when we cry for example). Different stages of trauma require different practices of resilience. To allow ourselves to be ‘weak’, to cry, to vent, to confide, is actually an important cognitive and emotional step towards recovery.

    Doing the little things that can strengthen our physical well-being are important - going to a group, writing, talking, walking, mindfulness - all help us to cope with the emotional and psychological demands of the situation we find ourselves in. Though the impact of the knowledge is complex, it can be scary at times. Not knowing can also be helpful at times, but it’s a delicate balance, and requires us to be able to be flexible and adapt.

What does Healing Mean to Us?

 

We talked about healing and what that might mean within the context of living with breast cancer. The diagnosis and treatment of breast cancer leaves us scarred both physically and emotionally.

    Naz explained that, for some of us, the physical damage from breast cancer and its treatments is long lasting, especially for those of us with secondary breast cancer who are living with this incurable form of the disease. She felt that in this context, physical healing might not be apt and so we concentrated on what healing might be in terms of the emotional aftermath of a diagnosis of cancer and how it affects our soul, spirit and motivation. This led to a powerful discussion of what healing might mean for us.

    The trauma of a diagnosis of breast cancer was likened to post traumatic stress disorder (PTSD) by a member with close family experience of the condition after military service. So, how best to move forward in the light of such psychological damage? Many of our members believe that one powerful route to healing is acceptance of how we have been changed after diagnosis, both physically and emotionally. There is a strong sense that accepting our “new normal” is not the same as resignation or “giving in”, rather it gives a sense of peace. Being at peace with ourselves gives members a feeling of “being able to breathe” and for others, allows time to grieve for the changes to our previous selves.


    Making peace is not just for ourselves. Common anxieties are the harm and the sadness our illness causes to our loved ones, especially for those of us with secondary cancer. Being at peace with ourselves means letting go of the guilt that our illness causes pain to others and, for some, allows those difficult conversations about the reality of death. Making peace acknowledges that we can feel sad and that our family members can feel able to feel sad too - and that it’s OK to feel that way.

    It is not always easy to reach acceptance. Feelings of anger and fighting against our reality is common and is exhausting. Some feel that we are not helped by the language of breast cancer - described as “toxic positivity” by one member. Terms likened to fighting a battle and winning a war causes emotional distress, especially for those of us with secondary disease where the battle will never be won. For others, physical symptoms such as pain or fatigue cause a direct affect on emotional wellbeing. Many of us have multiples worries, not just cancer and it can be hard to separate those apart. Suffering multiple traumatic events in quick succession taxes resilience and is especially hard.

    There is a strong feeling that healing does not happen in a linear progression but come in fits and starts and in many directions. It can be unravelled when we are taxed by new challenges. The phrase “Two steps forward, one step back “ was used by many. One of our members has a helpful reminder to tell herself of impermanence - that such feelings are not permanent.

    An important step to healing and acceptance is to “self care” - making space for grieving, being kind to ourselves, saying “no” to others if needed and using grounding when it all feels too much. A member describes how she looks up at the sky and takes a deep breath. Some of us have found counselling and psychotherapy helpful. Self compassion is important. One member describes how her family upbringing has resulted in her feeling she must always put others first and that impaired her ability to heal herself.

    It is felt that making peace with ourselves allowed a deeper connection with those friends and family members who are able to simply be with us. It can be a relief to stop trying to protect others and trying to do this alone.

    We were introduced to the Japanese art of Kintsugi, the art of mending broken ceramics by adding gold into the glue repairing the breaks. The analogy that broken parts can be made beautiful hit a chord with our members. We liked the idea of not hiding our scars but embracing them. One member told us that this meant she will be “enjoying my beautiful wonky life”.

    Making peace with ourselves. Healing. Sometimes the process can be helped with the support of others who understand.

Art Therapy?

Can art offer a pathway to resilience?

Our discussion on art explored our experiences of playing with our inner artist and we shared how making art and other creative projects helped us to cope with the effects of breast cancer.

    Naz told us that the brain mechanisms behind creativity involve letting go, a kind of mindlessness, the brain shows. Perhaps we feel art rather than think it? Resting our brains can lead to new ideas and problems can be solved without thinking about them. Resting our brain through art engages a part of the brain called the default mode network (DMN) and this can assist us to regulate our thoughts and emotions, it can re-energise us and bring harmony to our racing and anxious thoughts.

    

    Although not fully understood, art in a therapeutic sense can bring us resilience via an increase in our ability to access our own inner strength.
Our members, who are women with both primary and secondary breast cancer diagnoses, described a myriad of different forms of creativity that they found helpful, from playing a musical instrument to painting, photography to poetry, glass-work to knitting and crochet, beading to writing plays. Many women had found writing helpful during and after treatment, as a way of dissipating uncomfortable feelings, though some had felt their creativity was paralysed.

    For some, art is an escape from the everyday, and can be described as both mindful and mindless. We have a sense of losing ourselves in single-minded focus on a creative activity which frees us from our fears and anxiety. Discovering a new hobby or creative outlet can lead to increased confidence and sometimes new friends. Some picked up an old passion that they had loved when they were younger, perhaps a paintbrush or a musical instrument they used to play. For others, a journey of discovery into a new area of creativity has helped find a new pastime. Whatever direction our artistic and creative interest took us, it was clear that art offered them a sense of renewed purpose, and giving pleasure to others by sharing their creations with others was another reward.
    

    Many use their art to help others, perhaps selling items for charity, donating them to people in need or giving them away to friends. This sharing of something handmade, unique and personal can bring huge joy to both maker and recipient. Some creative pastimes provide special alone-time, while others, like singing encourage us out into the world. Many of us had found choirs and other singing groups to be extremely helpful in providing a joyful confidence building experience.

    Undoubtedly we are a group of talented creative women! Our enthusiasm for art indicates our dedication to self-care, a big element of building resilience. Each piece of art created, whether it’s a cardigan knitted for a baby, a blog about cancer, a heartfelt poem, a music recital, a memorable painting, or perhaps a song in the shower or a nicely presented meal, holds some of the essence of the creator.

Complementary Therapies

 

Research shows our mind and body are intricately connected. Ongoing studies are documenting that, when we try to nurture ourselves during the depths of diagnosis, treatment and beyond, we should take a holistic approach.

    Complementary therapies can play a large role in our ability to cope through treatment, even helping to maintain a standard of fitness, where possible. This can really help to boost our natural resilience. We must stress that the term is not to be confused with complementary or alternative medicine, which is often used interchangeably, but is actually very different.

    Reflexology was mentioned in our discussions a number of times, as was Mindful Meditation, Acupuncture, Hypnotherapy and Reiki. For those wishing to do something a little more active, Yoga, Pilates and Tai Chi are popular options, incorporating gentle guided movement and stretching. The Himalayan Singing Bowls/Sound Bath gives us music to sooth and relax to.

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

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

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

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

    Some of us have shied away from complementary therapies, perhaps seeing themselves as someone who ‘just wants to get on with it.’ Personal wellbeing practices such as meditation and journalling are helpful. Others have taken a ‘bury my head in the sand’ approach, believing they don’t need or wouldn’t benefit from additional help.

    

    Calming meditative activities such as crochet, knitting and sewing are popular, providing both focus and distraction. Some of us feel that exercise is our therapy, we run or practice yoga or walk in nature.
Some of us are unclear on what therapies might be available and whether we have access to them as cancer patients. Many centres continue to support patients for up to 5 years after diagnosis, and those with a secondary diagnosis may find they have open access to their local centre. However some centres only actively offer complementary therapies during and just after treatment and this may not suit us, particularly if we are working as much as we can through treatment.

    

    Therapies offered vary considerably by region, and sometimes we may decide to find our own private therapists. It is key to trust the therapist and believe in the treatments undertaken. For some of us, we want to go to therapists who have been through cancer themselves, and/or have had specialist training in working with cancer patients.

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

    There were a few points raised that we need to be aware of. Firstly, there is a lack of funding, as with most things. Secondly, most of the therapies available are not state regulated, only self regulated. So as it stands, anybody can call themselves a complementary therapist. That’s not to say that there aren’t skilled people around, but there is no central organisation or strict guidelines that they must be answerable to. The people treating us also need to be aware of the changes in our bodies caused by our cancer treatments, such as neuropathy, fatigue, joint pain, among many, many other side effects, and should be able to adapt their specific skills to our individual needs.

    As with most things on the NHS, accessing these treatments and classes is a bit of a postcode lottery and can have rather strict and unfair qualification criteria, even where they are available. Cancer charities can be a good place to start and they will often only ask us to donate what we can afford towards the cost, if anything.

    The financial cost of paying for the sessions ourselves certainly seems to be a substantial barrier in accessing them longer term. Having had a cancer diagnosis, sadly, many find their incomes and ability to work very much depleted, so their recovery is hindered due to lack of opportunity and support.

    So, we would always suggest telling your Breast Care Team if you choose to join any of the sessions named above, so they can keep a full picture of your health and treatment choices on record. It is also helpful for them to see if your recovery has been aided by any of the complementary treatments.

    The therapies will obviously not be up everyone’s street and some treatments are more popular than others, but in our discussion we had such positive feedback that we can only encourage people to try. We hope you will be able to pick out and experience something that is suitable for you!

    As a group we believe that psychological help should be part of the package of treatment following a cancer diagnosis, with much better information about how to access complementary therapies and what they can do for us.