Cancer Healing and the importance of Narrative - by Dr Judith Edwards PhD

This week's post is written by Judith Edwards, the psychoanalytic psychotherapist who started the free website cansurviving.com in order to help people recover from the trauma of a cancer diagnosis. She discusses the importance of Narrative in the cancer healing process.

Summary

Five years ago I started a free site www.cansurviving.com which is currently accessed in 46 countries. It sells nothing except self- empowerment, helping people to explore alternative and complementary treatments to standard chemotherapy/radiotherapy  treatment, and to aid the healing process. This site and its success has caused me as a psychoanalytic psychotherapist of over thirty years to think about ways in which these professional links have helped the site in its onward journey. I previously wrote a paper entitled ‘Cancer Healing and Containment’. I go on here to think about how this very process of containment then enables a new narrative to be created over time. I also explore how the group is a powerful tool in helping people manage ‘life after cancer’.

Keywords: cancer healing; narrative and narrative research; brain research and neuro-plasticity; containment

Introduction:

Narrative research emerged as a discipline within the broader field of qualitative research in the early 20^th century. A narrative is normally recognised as being ‘a series of connected events’ - which then form a coherent story in the mind. The great psychoanalyst Wilfred Bion worked with psychotic people who for one reason or another had experienced a break in connective linkages: they lived in an unconnected world and Bion coined the term ‘bizarre objects’ for what he experienced as  happening in the consulting room, as these bizarre ‘bits’ were projected not only into him but into the concrete objects in the room.(Bion, 1962:24-27) In a sense these people had become fragmented, terrified and alone. Some internal or external trauma had rendered them unable to think and make ordinary connections in their minds. He says elsewhere in the same book: ‘before an emotional experience can be used for a model its sense data has to be  transformed into alpha elements... {thinkable thoughts} The narrative form is associated with the theory of causation...’ (p.74)

Any cancer diagnosis is a trauma, both for the person who hears the words ‘you have cancer’ and the family and friends surrounding the afflicted patient. The capacity to ‘get what is said’ - which is called introjection in psychoanalytic language - may freeze up. There may be an active avoidance of the message, or an initial passive unresponsiveness before the full import of the words are taken in. This ‘playing possum’ (Broucek, 1979 ) is one reaction which may come into play when there is a feeling of inefficacy - why has this happened? Why me? What have I done? For some people these three words spell the beginning of a new state of mind, designated  as PTSD (post traumatic stress disorder). In this state of mind it is often hard to sleep, often the traumatic diagnosis is relived through nightmares and flashbacks, and people may experience feelings of isolation, irritability and guilt as I have already described in a previous article, Cancer Healing and Containment (see Edwards, 2017) These symptoms, as I pointed out, can range from mild to severe, and can have a significant impact on a person’s daily life. The site www.cansurviving.com was set up by me, a psychoanalytic psychotherapist, in order to help myself and others back to some sense of coherent narrative after the trauma of hearing those three words ‘you have cancer’. Antonio Damasio (2000:134) under a sub-heading ‘The Need For Stability’ talks about  ‘the processing of the self from the simple core self to the elaborate autobiographical self’...Continuity of reference is in effect what the self needs to offer’. His book demonstrates the importance of the neurophysiology of emotions. Our consciousness, our sense of being, arises out of the development of emotion: the ‘very thought’ of oneself, the experiencing self. As I and countless others know, the experiencing of the self receives a huge and traumatic blow when the cancer diagnosis is pronounced. The sense of continuity tends to be disrupted and the ‘self’ tends to become a series of fragmented pieces which one might (without using the term psychotic) link with Bion’s idea of ‘bizarre objects’. One is in a broad sense catapulted into ‘a state of disunity’ in the self. This 'sense of disunity’ in his/her patient is perhaps something which the medical ‘expert’ knows about but defends against, in a natural way to protect her/his own sense of self.

The story that started it all

This is just one story- from the person who gave me the impetus to start this site in fact: this has not been aired before and I will not mention the person's name...”no, they could operate on me, in fact wanted to excise my neck of all lymph nodes...they initially took a lump low on my neck as they couldn't get anything from several needle biopsies... they'd been going to remove one higher up, but by the time they came to do it, it had disappeared....that was around Octoberish I think....then at Christmas they wanted to excise the neck.... the lump that was evident there had now shrunk also, and I agreed to let them take further biopsies from nose throat tonsils etc, but not to strip the neck right out, because the lump that had been there was now almost gone...they were still trying to locate the primary source. The diagnosis originally given was that it was secondaries that were evident in the lymph nodes, but despite all the proddings, pokings, insertion of things where they shouldn't ever go and scans, the finest oncological minds of the region could not find the primary site.... but they still wanted to carry on with their traumatic investigative practices.... when it became clear that even if they did find the site of the primary, and deal with it in some way, it wouldn't make that much difference because the secondaries would get me.... these are their words....So  I had CUP.... cancer with an unknown primary.... this relates to about 10% of all cancers, but it's not very well known...so yes... I was glad that they'd decided I was beyond help... it gave me a clear field to do as I wished (which he then did in terms of research which was then passed on to me).... It has bee n a very interesting experience.... most life changing.... if you want to survive it that is..... if you just want a white coat to give you a magic bullet, so you can get back to your normal life, or if you believe in the doctor's curse, then I’d say these efforts aren't a good investment.....but if you're prepared to rise to the occasion.....It was Einstein who said something along the lines of.... you can't solve any problem from within the same consciousness that created it....there's nothing quite as worthwhile as raising your consciousness, don't you think?”

The cansurviving site  had this mail from a journalist site member who had recently been diagnosed.’I wanted to thank you very very much for being so kind to me.{the power of containment}  Initial diagnosis and those damn scans were shocking...I have to admit I'm no longer in a permanent state of panic, that subsided thanks to you but it's still far from ideal. Meanwhile I'm following a fairly rigid diet and having acupuncture. And have just about recovered from my shock about how revolting vegan and sugar free chocolate is!’ Slowly does it: baby steps which are indeed what the contained baby learns to take. But the battle between emotion and reason wages strongly inside the individual’s mind. Sophisticated moral and rational thinking is abandoned and the internal world feels as the quotation above indicates in ‘a permanent state of panic’. But people are not statistics: we all need to be treated as human beings with our own lives, feelings and wishes. Can a sense of narrative be restored, which incorporates but is not overwhelmed by the new information  about the diagnosis? In an article about a traumatised adolescent portrayed in a film Morvern Callar, (Edwards, 2017,:119-130) I examined how trauma can be denied and un-registered in the emotional life of an overwhelmed person. Others then may feel what the dissociated person perhaps cannot feel. Many people report feeling numbed and dissociated after receiving a cancer diagnosis: how can feeling be returned and a new narrative be resumed?

The new narrative

The three first items on the Stress Index are death, divorce and moving. All three of these can also refer to what happens when a person receives a cancer diagnosis: there is a death of the old self, which will never return, a divorce from previous ‘ways of being’,  and a moving slowly over time to a new way of being which encompasses what has taken place, and also moves the individual into a new ‘way of being with the self and others’ with all the changes that have taken place. In The Good Life (Music 2014; 97) the author quotes Affonso and his cohort of researchers who found that the capacity to make decisions and be attuned to one’s own and others’ distress depends on this experience of having been well attuned to. The cansurviving site which has grown so well was started by someone who had felt very much listened to by the person whose story is recounted above, who now, eight years on, is healthy and happy having been told to go home and make his will and prepare to die. His secondary tumours (the primary tumours as indicated were never identified) have disappeared. This was for me the beginning of a new narrative: one where some hope and indeed some experience could help with the inevitable depression and hopelessness which can often beset those faced with those stark three words, ‘you have cancer’.

The success of the cansurviving group lies I suggest in this very notion of providing a new narrative for the suffering person, and a narrative which does not emanate from just one person, but from a group. On the site, which grows as we have grown, there is a Forum called ‘How do I Start? This has the strapline ‘do you feel dazed and confused?’ as so many people do, wading around in the sea of information available on the internet  We offer the idea of sitting down , not falling into the urgency trap, listening to some music and a radio show, and thinking about causes, symptoms and effects in a simple way. If this cancer has taken a long time to develop in the body, the body can then start to render itself inhabitable to further cancers, and the person may think about living with the cancers if they are  already in the body, rather than die of them. This new narrative ‘story stem’ can then take root in the mind, affecting the old neural pathways so that they begin to die off,  and creating new ones, as science has shown (Cunningham, 1982).  Cunningham’s work describes the naturally occurring neuron death and its regulation by the development of new neural pathways. This offers us the idea which has now been well-researched about neuro-plasticity. Unlike a computer, the brain is constantly adapting itself. Norman Doidge in his exciting book The Brain that Changes Itself talks of the brain ‘not being an inanimate vessel that we fill: rather it is more like a living creature with an appetite, one that can grow and change itself with proper nourishment and exercise. (Doidge, 2007:47)  Removal of targets for certain populations of neurons accentuates the normal attrition of neurons during development. So what is the old narrative or target idea here? The ‘target’ idea after receiving cancer diagnosis is often that this is a non-survivable event, or one at least that will not be able to be survived without considerable (and very difficult) medical intervention, with surgery, chemotherapy and radiation. The target idea here is that the self has given up being in the driving seat, which is a seat taken over by orthodox medicine. While orthodox medicine may be indeed a treatment of choice, it is not the only choice, and when people emerge from being treated they often feel lost and alone without the solace of the medical team around them – a team which of course inevitably moves on and is not particularly invested in the individual's survival, nor can they be.

The group narrative

The idea of working in a group was one which appealed to me following beneficial and creative experiences of so doing in my work context at the Tavistock Clinic. Group work is a form of voluntary association of members who all benefit from a form of cooperative learning that enhances the total output of the activity more than when done individually. It aims to cater for individual differences, develop skills such as collaboration and critical thinking, towards the creation of what one might call ‘a group mind’. You change the way I unfold, I change the way you unfold- we become co-workers in this new enterprise. The aforementioned psychoanalyst Wilfred Bion pioneered work in groups, analysing the underlying unconscious processes which might affect the running of the ‘work group’.  His influential book Experiences in Groups and other papers (1961) was less a guide for the therapy of individuals within or by the group, than an exploration of the processes set off by the complex experience of being in a group. The book quickly became a touchstone work for applications of group theory in a wide variety of settings. The group work which takes place under the umbrella of www.cansurviving.com is not however a project designed to analyse participants (or the Site Founder!) but to offer a way forward in which all members can feel they are a part. It is an awakening in which all members of the group can experience themselves as co-workers as I have said. Each member writes her or himself into the group narrative. As one member said ‘I couldn't do this by myself’.  There have been the odd posts about such things as Burberry handbags, and the usual crop of robots at the beginning, but now the group seems to work for the good of all participants and is creating a vast resource which one of our members called ‘brilliant’.

We have a Newsletter which also helps our members feel that they are part of a project, an ongoing narrative which they can influence,  rather than being external to it.  One member wrote this message after our last Newsletter, which includes news of all the central team members (of which there are five including the site founder) . ‘Thank you so much for including us in your newsletter.  It is great to find out more about your helpers, and it tends to make them people we feel we can know rather than just a name. Barbara and I admire the efforts all make to ease concerns and assist so many people get through the dreaded C. We also believe a website focussed on building personal stamina in the so many ways members suggest can assist far more than many of the product suggestions offered.  We are not against any product or suggestion that can be offered to anyone, in some way they can all help somewhat we guess?  It is the mind set to get through the problem that we find helps so many people with any issue they may be facing and your website could quite often be the "Key starter" for this.” The idea of the site being a ‘Key Starter’ is an excellent one- and it IS the start of something new...there is no going back and most people really appreciate that, and enjoy new lives in the company of others. Being part of this site and helping it grow is one of the activities that make up the whole that is ‘the designated patient’, no longer an isolate but part of a vibrant group and able to contribute on all the Forums on the site, including Diet, (with sub-sections on naturopathy, homeopathy and acupuncture)  Mind and Spirit, Depression, a Library, and Vegan-friendly restaurants. And of course the elephant often unmentioned in the room, Death, under a title ‘Will you or Won’t you’. Atul Gawande’s Reith Lecture and his book ‘Being Mortal’ are mentioned here. As he says ‘if talking were a drug it would cost millions of pounds’ as we change our narrative through this group communication we not only change ourselves but give back to others. These changes are hard work for most of us, make no mistake about it, and one can benefit from returning to the narrative when one is discouraged. Athletes practise this kind of daily discipline, and cansurvivors too can begin to cultivate this new mindset in order to effect change and to maintain it.  A sense of ease with the new life pattern does emerge over time. Gradually adding in raw, organic foods, super-herbs, clean water, exercise, deep sleep and meditation etc. into our daily lives will cause an undeniable shift in metabolism and in the ability to go out in the world and carry on living .  As people begin to feel the results from the shifts being made, they regain happier states of mind and feel compelled to share what they know in the growing narrative- as was I. It spreads from there. This type of personal experience is what cascades into more and more people making changes and transforming from the inside out (Edwards, Cancer Healing and Containment, 2017).

One has to be one’s own advocate, but in the company of others, make one's own decisions, in a world post-cancer diagnosis where there are no magic bullets and no cast-iron guarantees whichever route you choose to take.

When I first was diagnosed with cancer I dreamed of driving in my car into a huge black cloud. I could see nothing. But I could see that further along - but how much further along-  the cloud turned into thin fog, then who knew what came next? Yes, a storm was brewing. I can now look back, and I really resonated with something Haruki Murakami said in his novel Kafka on the Shore.

"Once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about."

The way of narrative and a new story is how we discover who we are; all of us on this site have discovered something more about ourselves through being part of this group venture. Creativity after diagnosis is something which unites us all, and is also the name of a Forum on the site, where ‘famous’ people and also just ‘ordinary’ people find out that creative wellsprings become stronger in the face of adversity . This is not about creating a revenue stream, but a new stream of conscious awareness which affects how we live our lives post-diagnosis. Eve Ensler, creator of the Vagina Monologues, was diagnosed with Stage 3-4 cancer several years ago –‘Cancer was just like a smash into the wall.  When I sat there and they said the cancer might be in your liver too, it was like a new world. Wake the fuck up, sister! And I bless it…Was I glad to get cancer? Are you kidding? Of course I am. I wasn’t in the beginning. But then I really got it. I’d always been out to prove myself: was I going to prove myself to death? Now? I’m missing seven organs and 70 nodes, and I’m functioning. How would I not love this body? Once you live in your body, you can just be’.

Conclusion

What I hope to have demonstrated here is that the importance of the new narrative cannot be underestimated in the overall picture of healing from cancer. This allied to working in a group, creating a new narrative in which each individual is part of the whole, is a vivifying and helpful process, as many people writing to us have testified, and as the rising numbers on the site also bear witness to. The third point in this triangle for me has been the experience amassed over thirty years from my professional work, and these three aspects together have produced something which has been called by an Australian member who was recommended the site by US colleagues as ‘the best site on the web for healing cancer’. Since there are over nine million of them that is indeed an accolade.

References

Bion, Wilfred R.(1962) Learning from Experience, London, Karnac

Broucek, F.J. (1979) ‘Efficacy in Infancy’ International Journal of Psychoanalysis 60:311-16

Cunningam, T.J. (9182) ‘Naturally Occurring Neuron Death and its regulation by the development of new Neural Pathways’ International Review of Cytology, 74:163-186

Damasio, Antonio (2000) The Feeling of What Happens: Body, emotion and the making of consciousness London, Vintage Books

Doidge, Norman (2007) The Brain that Changes Itself  London and New York, Penguin Books

Edwards, Judith (2107) Love the Wild Swan: Selected Works in the world library of Mental Health, London and New York, Routledge

Music, Graham ((2014) The Good Life: Wellbeing and the new science of altruism, selfishness and immorality, London and New York, Routledge