It’s Monday morning. We are sitting in a spacious room with a bay window looking out over the beautifully tended gardens of Penny Brohn UK’s national centre on the outskirts of Bristol. I’m in the weekly treatment support clinic with a group of people, all affected by cancer in some way.
Asha is new to the group and sitting slightly apart. She wears a colourful scarf around her head. She is half way through a course of chemotherapy for primary breast cancer, which will be followed by surgery and then radiotherapy. She’s been told that she will be eligible for breast reconstruction and that she’ll be on hormone therapy for at least five years. If all goes well, one year after her radiotherapy is finished, she’s been told that she’ll be discharged to follow-up by her GP as part of her low-risk stratified pathway, but that the hospital team will be there if she has any concerns. Diana has triple negative breast cancer, which was treated with curative intent three years ago, but two weeks ago, at a routine follow-up scan, was found to have spread with two small lesions in her lungs and one in her liver. She is still waiting to hear what treatment is being proposed but is bracing for another round of chemotherapy. She looks strained but determined. Next to her, her husband Oliver looks nervous and subdued. Joan comes in late with news that her latest tests show that the third line chemotherapy she’s been having as part of a trial for widespread metastatic breast cancer in her bones and lungs has not worked and that she’s being taken off the trial. To look at her, you wouldn’t know she had cancer – attractively dressed, suntanned from being in the garden, even the usual sparkle in her eye as she greets the others warmly and sits down.
All three women have been diagnosed with breast cancer, but all are now facing very different challenges. Each brings a very different set of resources and attributes which could either help or hinder them, yet they all want to feel that they have some control over what the future will bring – the alternative means helplessness, hopelessness and maybe despair.
So we spend our morning discussing and practising evidence- informed methods which people can use to build their resilience (Thompson, 2011) to help them cope better with cancer treatment and increase their chances of living as well as possible for as long as possible. We cover many topics including physical activity, good nutrition, stress management, mindfulness, mobilising the support of others, and people share the ideas and experiences that have given them greater wellbeing and helped them to meet the challenges of the whole cancer experience. Although I am the only doctor in the room, I feel that my expertise is more than matched by the acquired knowledge and lived experience of the others in the room, whether they are going through cancer treatment themselves, or whether they are a close supporter of someone who is.
The body is hard wired to destroy cancer cells
I start by introducing the group to the fact that healthy bodies constantly produce abnormal cells with the potential to develop into cancer cells through everyday cell division and replication. Even those who are quite ‘health literate’ are sometimes unaware of this fact and that, in normal life, a healthy immune system can detect and destroy these cells before they have a chance to develop into established cancers. We then go on to explore some of the factors which increase the chances of developing more abnormal cells than a normal immune system can cope with: genetics, infections, increasing age, carcinogens such as tobacco, alcohol, asbestos, obesity (DeVita et al, 2014) this is familiar territory for most people. Then we move on to discuss lifestyle factors, such as stress, sleep deprivation, overwork, poor nutrition, lack of physical activity, depression, lack of connection to people or things that matter, which can suppress our immune systems, and prevent them from detecting cancer cells as efficiently as usual (McDonald et al, 2013). Suddenly it becomes clearer – alongside surgery, radiotherapy, chemotherapy and hormone treatment there IS something else that can influence the growth of cancer cells in the body – the immune system – and this is something that individuals DO have some control over.
They know that there have been times in their lives when they’ve felt more resilient and more resistant to infections, and that there have been other times when they’ve felt run down and vulnerable to every circulating cold. They also know from experience some of the circumstances in their lives that have lead to these different scenarios, but they’ve never connected this with the development of long-term health conditions before. So the conversations around nutrition, physical activity etc start to make more sense – we are trying to ensure that the immune system, and the body as a whole, has the best conditions to operate most effectively. Suddenly there are lots of areas that people can work on that may make a difference to the course of their cancer experience – and whether that simply helps them feel more in control, or results in the reduction of side effects and an improvement in quality of life, or whether it eventually contributes to reducing the risk of recurrence or progression (There is some preliminary research suggesting this can happen (Ornish et al, 2005; Stagl et al, 2015; Thomas et al, 2016) – the only ‘side effects’ are likely to be positive, as people are guided to ‘listen to their own bodies’ and choose those individual strategies which they, themselves, experience as enhancing their wellbeing and building their overall resilience.
Asha has been referred by her nurse specialist because, despite her good prognosis, she appears to be getting more and more depressed as her treatment progresses. Her nurse wants her to find some support from others who have been in similar situations. Asha is pre-occupied by the fact that she’s been told she may never be able to have children, something which, on top of the cancer, she does not know how to communicate to her family and community. Her grief is palpable but she listens as the others talk. For her, focussing on the things she does have some control over like maintaining her physical fitness, being able to express her fears and anxieties among a group of people who can truly empathise, and maybe accessing some professional support through counselling, might be the first, key, resilience-building steps that help her to talk more openly to her family and friends. Helping her develop flexible thinking – ‘what’s the best that could happen? what’s the worst that could happen? and is there anything I can do to make the best outcome a bit more likely?’ – may help her live more comfortably with the ‘possibility’ rather than her assumed ‘certainty’ of future infertility.
Diana and Oliver gravitate towards Joan during the tea break. Her vitality and obvious sense of wellbeing, even though her physical condition has been pronounced ‘poor’ by her doctors, is clearly encouraging them – what is her secret? She lists a number of things: her garden, her grandchildren, her enjoyment of fresh vegetables and fruit grown by her husband, and her clarity around her decision that she does not want any further aggressive treatment, at least for now. There is a sense that ‘progression of cancer’ is only one way of assessing health and illness, and that somehow Joan seems to be living better than many of her friends who haven’t got cancer. She has a sense of appreciation of each passing moment, and of each connection that she makes, that makes being in her presence a very rich experience. Joan tells me later that she wasn’t sure whether she should attend today’s session as she thought that news of her growing, treatment-resistant cancer might depress or upset others in the group, but she feels uplifted and touched, that she has actually been a source of inspiration for others. Oliver, in particular, thanked her for her words, and told her that, paradoxically, he now feels more able to support Diana through her upcoming chemotherapy. He’s not a gardener, but he’s going to listen to Diana, and make sure that she has access to the things, which she feels will bring her strength and comfort through her treatment.
Taking back control
What all these people have in common is the emerging sense that they are able to take back some agency over their lives, and in doing so, have an effect on the way their cancer journey progresses. Of course the irony is that they have always had control over their lives, but a diagnosis of cancer is often a ‘de-activating’ event, which threatens the very core of our being, and frequently reduces even the most empowered individuals to a state of fear and childlike passivity, because of the implied associations with our mortality, the high-tech, often aggressive, treatments and the complex biological processes involved as experts take over.
Finding the opportunity within the crisis of cancer
But the flipside of this is that a diagnosis of cancer can also provide a unique ‘teachable opportunity’ where people find their lives and future plans so disrupted, that making significant lifestyle changes often meets with a lot less internal and external resistance than at other points in their lives, and sometimes becomes an important part of making sense out of the experience. So while it often ends up being a ‘de-activating’ and depressing event, a cancer diagnosis has the potential to become a profoundly ‘activating’ and transformative experience if dealt with in a way, which has personal resilience-building at its heart (Ejbye and Holman, 2016). Penny Brohn, one of the co-founders of the charity, and someone with lived experience of being a breast cancer patient, frequently used the analogy of the Chinese script for the term ‘crisis’, which is made up of two symbols, one being the Chinese character for ‘danger’ and the other being the character for ‘opportunity’. ‘A crisis is a terrible thing to waste’, she used to say.
Picking the low-hanging, tasty fruit
Some people have an intuitive sense that they need to look after themselves holistically by paying attention to their psychological and emotional needs, as well as physically getting through the treatment, in order to maximise their chances of living as well as possible for as long as possible. For others, the scientific explanation of the links between mind, emotions, diet, activity, sleep etc and the immune system, and the connection between the immune system and cancer provide a helpful, motivating rationale for engaging in self-management. Understanding that resilience (and immune system health as part of that) is multi-dimensional, and that everyone can build their resilience by finding ways of drawing on their own individual strengths and resources, is a further enabler. People realise that matching their goals to their personal resources, preferences and situation, gives them the best chance of success. At Penny Brohn UK we talk about ‘picking the low-hanging, tasty fruit’ and going for quick, enjoyable, easy wins initially, to build confidence and feelings of self-efficacy – this may involve doing five minutes of relaxation daily, making time to take the dog for a walk, confiding in a friend, finding a better work/life balance or thinking about ways to eat one more portion of vegetables per day.
An individual flexible approach
Recognising that there is a wide range of options when it comes to supporting resilience is the basis of the Bristol Whole Life Approach (www.pennybrohn.org.uk/services). It gives people choice, and allows them to express their individuality, which, in turn, enables them to focus on the things which give them joy, meaning and strength. This can be a very helpful antidote to the feeling of ‘being on a conveyor belt in a sausage factory’ that some people experience when going through hospital treatment. It is a flexible approach, which requires individual tailoring for maximum benefit – a contrast, and therefore a very useful complement to, the highly protocolised and standardised cancer treatment regimes that most people undergo in hospital.
Avoiding guilt and self-blame and recognising that we can’t control everything
Whilst feeling ‘activated’ and confident to self-manage some aspects of health is a positive experience for most people, there is also a possibility that hearing about the influence of lifestyle on cancer will leave some people feeling over-responsible for their own condition, resulting in guilt and self-blame, or sometimes a feeling that they ought to be able to ‘cure themselves’ without any medical intervention or monitoring. This is taking self-efficacy too far – and is one of the only truly negative, potential yet usually avoidable, ‘side effects’ of taking a proactive holistic approach. With the careful explanation that cancer is a multi-factorial process, and that not all of these factors are under our individual human control, we can help people understand that what they are trying to do is optimise their underlying physiology – to do the best they can, with the things they can influence. In the vast majority of cases, this will have a significant positive impact on quality of life and wellbeing. Sometimes (this is harder to quantify) it will have a significant beneficial effect on risk of cancer recurrence or progression (Ornish et al, 2005; Stagl et al, 2015; Thomas et al, 2016) but sometimes, the disease develops a momentum of its own and becomes unresponsive to human intervention – whether that is medical treatment or self-management attempts to support the immune system and restore the body’s underlying balance. Avoiding guilt and over-responsibility, but still remaining open to the possible benefits of meaningful self-help is a fine balance to achieve – they are two edges of the ‘sword’ of empowerment. However, with appropriate support and guidance and the right framing at the start, people using Penny Brohn’s services are generally helped to find and maintain this position of realistic hopefulness.
Realistic hopefulness vs false hopelessness
And realistic hopefulness seems a real key to living well, with and beyond a cancer diagnosis. In this world of increasingly available statistics, people sometimes feel that they become, and are treated as, ‘average cancer patients’ with a prognostic label around their necks – they stop being a person and become a patient with a shortened life expectancy. Often, as doctors we feel that one of our key responsibilities is to protect our patients with poorer prognoses, from unrealistic hopefulness or ‘false hope’, and in doing so, we run the risk of giving them ‘false hopelessness’, a term I first heard during a lecture given by the late author (Servan Schreiber, 2011 ) and neuropsychiatrist, Dr David Servan Schreiber, who had himself been diagnosed with an aggressive brain tumour. False hopelessness, he argued, can actually be ‘nocebic’, ie it can act as a powerful negative placebo, reducing quality of life, and even negatively affecting cancer outcomes. Patients, even if their self-management steps have resulted in an improvement in functional status, or a reduction in their risk factors like smoking, obesity and physical inactivity – things which are known to improve prognosis across the board – report being constantly reminded by their oncologists that their cancers will definitely ‘get them’ in the end. Reference is rarely, if ever, made to the small number of well-documented cases of complete or prolonged remission from advanced disease that medics label as ‘statistical outliers’ with unexpected, ‘spontaneous’ remissions (Turner, 2015). In reality, most of the cases involved feel their remissions are far from ‘spontaneous’ and have a lot to do with the lifestyle changes they have made, although causation is obviously impossible to verify objectively. Although there are several oncologists around the country who don’t conform to this stereotype, medical attention and multi-disciplinary team (MDT) decision-making is typically focussed on the behaviour of the cancer cells (the ‘seed’), rather than on the whole person in whom those cancer cells are growing (the ‘soil’), which is an area where, I would assert, there is always something helpful that can be done. How can we, as health professionals caring for people affected by cancer, make sure we ‘do no harm’ in the way we communicate around the question of hope?
Joy of living as the most sustainable motivator
Asha, Diana and Joan are all living with a cancer diagnosis, but they have learned that this need not become their defining feature. All humans live with the paradox of having to prepare for the future without knowing what is around the next corner, nor when they will die, and a cancer diagnosis just brings this into sharper relief. Asha, Diana, Oliver and Joan, are being helped to focus on the fact that they are all people with lives to be lived, and that cancer is only a part of this, and are being supported to prioritise and develop the things that bring more balance and joy into their lives, which will help each of them towards greater resilience. Each in their own way, will then be a bit more prepared and resourced for handling new, or ongoing, challenges, and they will have done what they can to increase their likelihood of living as well as possible for as long as possible. And this approach is likely to be the most effective way of supporting people to live well in the long term, because, for most people, although fear of dying can provide useful initial impetus, joy of living is a much more powerful and sustainable motivator.
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