From the other side of the zipline

A little more than a year ago, I learnt I had a life-threatening illness. The Director of Screening gently told me the lump was ‘not friendly’ and would require surgery, but he also said that I would not die imminently! That was reassuring… but from that moment, and probably in the days before that, I consciously and deliberately used all the skills and knowledge I have as a clinical psychologist and systemic psychotherapist.

Various ideas came into my head: people struggling to incorporate new experiences into their identities (I did not find this hard); and Kubler-Ross with her stages of grief. I followed no curve and my disbelief had lasted less than 10 seconds. I know that one in six women are diagnosed with various types of breast cancer, and like many others, I have friends and colleagues who have been through this experience. I felt lucky to have had it detected early. I told the doctor that I would not be angry about it as there was no point. I would choose to direct my energies in a more positive direction. 

Getting Daphni done

These initial reactions led to some interesting conversations with friends and colleagues. But I could also draw on an array of anxiety management techniques and mindfulness, and the necessary skills to consider communication patterns (mine and others) in a way that I had not thought useful until then. I had to work out how and when to tell people closest to me, activating a social and familial network in a manner that had never before been required. Managing a busy practice that included Expert Witness reports was awkward – friends, including legal colleagues, took on specific roles at my request to help me manage it all. I did not have a partner, child or sibling who could join me at the clinics, but friends came to certain appointments and some acted like a relay team passing the baton (me!) through the preparation pre- and immediately post- surgery. 

I quickly gave the lump a name, a helpful idea offered by my remote PA. I saw the months ahead as getting ‘Daphni getting done and dusted’. I told people that although it was frightening and serious, I would try to deal with it as much as possible with a sense of humour – for example, the Macmillan Cancer Centre, ‘MCC’, became affectionately known as ‘Lords’ after the cricket ground, and I chose an alias to appear on the screen which might make people smile [Prof. Bea Snease]. I asked that people did not catastrophise in front of me, but rather helped to keep my spirits up in a way that made sense to me – however strange that felt to them. 

Those who could not manage this approach, saw me little. Those that did helped massively. I was very aware that my attitude would be hugely influential in both management and outcome. I told my treating team that I might be an unusual patient and offered them a contact with a dear friend and colleague (a Professor of Nursing and Bioethics) whom I trusted to negotiate and mediate if things got sticky. Some of them found me a challenge, and at least one chose to interpret my approach as denial. We did not get along well! With others I joked about writing a book with a working title of ‘Dealing with Breast Cancer as a single woman with a sense of humour. P.S….. I am also a psychologist!’ A long working title, but it is a work in progress and may yet come to fruition.

The emotional C

In the treatment process I made a lot of decisions, big and small, and not only about treatment. I decided to be out of London for a while to recover from the operation, a choice that some thought odd. I had considered the pros and cons and tried to assess how I would feel in the short and longer term. I hoped to make rational choices while recognising the emotional sea churning in and around me, doing my best not to be overwhelmed by it. 

I learned about receiving – and therefore something about sharing – diagnoses. A colleague I barely knew became a close friend. She had not only been through a similar process some years earlier, but as a Consultant Child and Adolescent Psychiatrist, she had used many of the same skills as I did. She was one of the few people who understood implicitly that our personal and professional selves were intrinsically entwined in such a way that the experience meant that both would be impacted. Combined, we have more than 65 years’ clinical experience in the NHS and she had courageously talked on Radio 4 about being diagnosed and offered treatment options as a patient, and how it affected her actions subsequently [https://www.bbc.co.uk/programmes/b06qkp8y].

Getting through the surgical and post-surgical interventions, coping with times of uncertainty and appointments for test results was infinitely easier with company, and friends, together with my beloved niece, contributed significantly to my ability to manage. I was very aware that everyone had numerous commitments – not only work but often children or elderly parents who obviously had first call on their time. I explicitly said that I could only ask for help if they felt able to say ‘No, that date is not possible’ without feeling awkward: I assured them that there were others I could ask, and said that if we were not honest, difficult feelings would develop and I would feel less able to call on them another time.

My network rearranged itself: some people came forward in ways I would not have imagined, others surprised and even shocked me, some told me what I should feel and thought that was empathy. One or two have not contacted me at all since my diagnosis and I have yet to hear them explain why. I accept that maybe I will never find out. It was interesting that I felt the negative side of the world’s shift away from ‘snail’ mail acutely: I received many texts and emails, but the value of a card which someone had taken the time to choose, write and post was a tangible sign of care… this should not be underestimated. 

The relationship matters

Some of the clinicians I met along the way were truly amazing: respectful, informative, treating me partly as a colleague, enabling me to bring all of myself into the consulting room. This allowed me to acknowledge my fear and vulnerability, seek advice and reassurance and be strong, resilient and even sociable. Every one of those people had a compliment letter sent to them and their manager, and I often took in a cake for the team – all the administrators and clinic team without whom none of us can do our jobs. Cooking was a marvellous distraction, a therapeutic gift for nights when sleep was elusive or a way to focus elsewhere when trying to manage pain with less analgesia. 

There were a few who showed so little psychological understanding or such an absence of communication skills that I was left breathless, angry and/or upset. At worst, it led to me asking to see a different member of the vast team. Mastery and a sense of agency is a powerful aspect of taking charge (as far as possible) of one’s own treatment pathway. Finding surgeons, oncologists and nurses one can trust and feel safe with is an essential requisite for getting through. It is not only in psychotherapy that the relationship matters.

On reflection, I did not think to reread Daniel Kahneman’s Thinking Fast or Slow at the time – but I know I did both. Anyway, serious literary delving was not possible very often, at times just putting one foot in front of the other and making a cup of tea was something to celebrate…. I suddenly understood from the inside what ‘fatigue’ could really mean.

When the major treatment phase was over, I faced the prospect of gathering myself together, contemplating what it all meant and the decisions I wanted to enact for the future. One’s ideas about how to live one’s life are certainly honed by thinking it could be curtailed! At this point, initially I found less to help me, although it was useful to hear friends talk about changes they had intended to make in similar circumstances and then look at how successful they had been in implementing and maintaining these. As things settled, I did draw on narrative ideas from the systemic field and some of what I knew from Multi-Family Groups for those who were ‘stuck’ in their illness identities. 

I took the space and time to process the experience taking up the offer of a place to stay in the Alps. I gazed at the mountains and kept up my frequent use of mindfulness meditation. I did Tai Chi often, swam almost daily to increase my stamina and gradually became a bit fitter. I slowly began to know myself again. 

A life-changing experience

Then, when my body seemed to have found the new ‘normal’, I started the long-term medication. I had already discovered that I was a ‘delicate flower’ responding with side effects or reactions that were relatively rare, so I was lulled into a sense of optimism when not much happened for a month. However, I was not surprised when this changed, and there were side effects galore. Some of these have responded to regular acupuncture, others needed to be managed or adjusted to. Only then, did I slowly venture back into the world of work; and just for a few months before taking a planned break so that I was ready to face the next decade with renewed energy and clarity of purpose.

This trip to a warmer climate for at least a month of the UK dark winter was the first of many: the annual routine I intend to adhere to as part of my commitment to maintain healthy strong bones. I headed to South America to spend time with a close Peruvian friend. I brought only one book, The Undoing Project: A True Story by Michael Lewis, not really realising it was the story of two psychologists, Kahneman and Tversky. It made me reflect on my decision-making processes and assessment of risk. This is inherent in some of the treatment decisions, not only surgery. For example, the individualised cost / benefit analysis carried out when chemotherapy is contemplated; and the effects of radiotherapy which were explained to me when the daily regime was outlined, and reiterated when, unusually, it was extremely painful and uncomfortable from day one. Inevitably, pain, discomfort and other aspects of treatment such as hair loss are all balanced against the efficacy with which they treat the cancer or reduce the chances of it recurring, and thus are directly connected with one’s intention to stay alive. The choice is there, but it is perhaps somewhat illusory. 

Reading this book in December led me to be curious about how my views about risk were influenced by whether a situation is imposed or truly a matter of choice, and how each matter is presented – as a potential gain or possible loss. I had no alternative but to accept my diagnosis, and many things followed from that. But now, in a much lighter way, different opportunities were presented – a chance to fly over the Nazca lines and later, to spend a night in a pod, hanging high up in the Sacred Valley in the Andes. I quickly said ‘yes’ to both, as connecting with the wonders of nature and the universe have a more profound meaning now. 

I chose the moderate uphill ‘walk’ to the pods rather than push my knees through a climb on the Via Ferrata, that seemed neither required or sensible at my age. Coming down was by zipline! Some ideas rushed through my head. Firstly, related to having a new and exhilarating experience post-cancer – I briefly wondered if I had the guts, but then reminded myself that having positive life affirming opportunities should not be over yet. Having just finished The Undoing Project, I separated mathematical probability of risk (which I assessed to be miniscule: the company have highly developed safety procedures) from the fear of getting up a sheer mountainside and being ‘launched’ on the zipline. When I was told that in fact there are seven ziplines, I recognised that the fear would diminish as I progressed down; the delight and exhilaration growing. 

I like metaphors and often use them in therapeutic work. In some ways the year-long process was rather like a series of ziplines. It was all set into motion by a recall after a routine mammogram, then I felt pushed off into the unknown and whizzed along without feeling that I had much control. From time to time it was as if I arrived on a ledge where I tried to find some stability and ground myself. This pause between events allowed me the opportunity to gather my wits before being propelled forward yet again. Perhaps each time I could reflect on having met a challenge or two, review my coping strategies and reassess my sense of being strong and resilient.

As was the diagnosis, the experience in Peru was a life-changing one. Challenges met. I smile on the inside each time I think of the ‘walk’ – harnessed and attached to the mountain with caribiners and ‘zipping’ down. I marvel that a year ago I was in a very different place. 

- ‘Dr Roni Pea’ is a pseudonym, but I can be contacted via [email protected]  and I am happy to provide some references for those interested  

- I am developing retreats and pop-up communities in Peru – for the well, and for those who have faced/are facing a major illness, their families and friends. Please contact me at [email protected] for more information.