Can cancer ever be a good thing?

Post by Fiona Menger, Research Associate, Institute of Health and Society, Newcastle University

Dr Menger blogs about how she was inspired early in her career by Times Journalist John Diamond and has recently returned to his writing while working on a study on the positive consequences of having cancer.

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John Diamond, author of “C, Because cowards get cancer too”

As a newly qualified speech and language therapist in the late 90s, I was an avid reader of Times journalist John Diamond’s weekly columns on his experiences of being treated for head and neck cancer. Diamond was one of the UK’s first ‘cancer columnists’, writing about his reaction to his diagnosis and treatment, and the correspondence he received from his thousands of concerned readers. His columns became two books, a documentary, a play, a TV drama, and were followed by many other cancer survivors writing about their experiences in the media or on personal blogging platforms.

John Diamond conveyed to his readers not only that it was ok to write about personal experiences of cancer, but that it was positive to share his story. He was adamant that he was neither brave nor strong, but that he was, in his own words, ‘a coward’, a passenger on a journey where he had very limited control. For me, John’s strength lay in his writing and his reflection. He was simultaneously eloquent and rude. Each day when the radiologist would ask, “How are you today?” he would grumpily reply, “Well, since you ask, I’ve got cancer.” I loved that about him. He was honest and funny and had a natural ability to convey the serious level of crap he was living through. He also taught me a great deal about viewing care from a patient’s perspective, something I have tried to carry with me throughout my career.

I recently returned to John Diamond’s writing because, twenty plus years later, I find myself working on a head and neck cancer-related project with a focus on a phenomenon called post-traumatic growth. Around 20 years ago, psychologists began to investigate post-traumatic growth in survivors of traumatic experiences such as natural disasters or accidents, but more recently the concept has begun to receive attention within the cancer research community. The principle of post-traumatic growth is that a person can, over a period of months and sometimes years, come to perceive positive benefits as a result of their trauma (in this instance, cancer). It might mean, for example, that a person feels emotionally stronger, that they appreciate their life and relationships more, or that they feel they have renewed focus and direction. The researchers who coined the term report that to experience post-traumatic growth, a person must go through a process of rumination and reflection. They write that it is necessary to work through a period of recurrent thinking about the event with the aim of trying to make sense of what has happened, to problem solve and to reminisce. These were skills that John Diamond demonstrated in spades. In the final chapter of his book, ‘C – Because cowards get cancer too’, Diamond recounted a conversation with his wife, the chef and author Nigella Lawson:

‘It’s such a strange time, isn’t it?’ I said.

‘How so strange?’

‘Oh you know. Strange in that I’ve never felt more love for you than I have in the past year, that I’ve never appreciated you as much, nor the children. In a way I feel guilty that it should have taken this to do it, I suppose. But it is strange, isn’t it?’

For the first time, I found myself talking like this without resenting that it had taken cancer to teach me the basics, without resenting that there was part of me capable of talking like a 1950s women’s magazine article without blushing.

I still don’t believe that there is any sense in which the cancer has been a good thing but, well, it is strange, isn’t it?

Quote from: Diamond, J. C. Because cowards get cancer too. Vermillion. 1999

So, is there ever any sense in which cancer can be a good thing? Research across different types of cancer survivors suggests that post-traumatic growth is a common occurrence but that it doesn’t happen for everyone. There is also some limited evidence to suggest that people with cancer who experience higher degrees of post-traumatic growth may have better health-related quality of life. What we don’t understand is what helps or hinders people to experience these positive changes. This is what our project – “Life after Head and Neck Cancer” aims to determine. We plan to interview people who have finished treatment for head and neck cancer and have had time to reflect on their experiences. We will explore coping mechanisms, support systems and beliefs about the impact head and neck cancer has had on people’s lives. Why is it important to better understand post-traumatic growth? Well, if researchers can somehow identify and understand how people develop post-traumatic growth, this could inform the development of services to support people to have more positive outcomes after cancer.

This Sunday (2 June) marks National Cancer Survivors Day. We are hopeful that, if post-traumatic growth can in some way be encouraged and supported, more and more cancer survivors can live well following their experiences. This work is in its very early stages, but I am extremely proud to be part of it.

John Diamond died in 2001, following a recurrence of his throat cancer.



Figure image: reproduced with permission from: Diamond, J. Close encounters of an alternative kind. BMJ 2000; 321:1163

All articles posted on this blog give the views of the author(s), and not the position of Fuse, the Centre for Translational Research in Public Health; the five North East Universites in the Fuse collaboration, or funders.

Cancer and the simple pleasure of a good cuppa

Posted by Duika Burges Watson, Lecturer, Institute of Health and Society, Newcastle University

Thousands of people will today enjoy catching up over cake and a cuppa for the World's Biggest Coffee Morning, Macmillan Cancer Support's biggest fundraising event. But what if after cancer that cuppa and cake don’t taste right?

“When I had been through the treatment and was supposedly ‘cured’, I had hoped a cup of tea would do what it had always done and give me pleasure. But it didn’t, the tea had a textural product in it so I could swallow it. It wasn’t tea anymore, I felt miserable with it”

So said one of the head and neck cancer survivors who participated in our NIHR Research for Patient Benefit (RfPB) funded study, ‘Resources for Living’. Living beyond the life-saving treatment for cancer, all participants in our study had on-going difficulties with food and eating. It’s not the same for everyone, some people return to normal eating, but for those that live long-term with ‘altered eating’ and the unique difficulties they have, it can be miserable.

Since we formed the Altered Eating Research Network at Newcastle University following the end of the study, we’ve come to appreciate just how widespread the problem is of altered eating. Far from limited to cancer survivorship, we have a long list (and one that grows with each successive public engagement event) of conditions and experiences that may result in altered eating. We define ‘altered eating’ as a changed state of any combination of physical, emotional and social interactions with food and eating that has a negative impact on health and wellbeing. It’s a deliberately broad definition that we’ve found useful in charting a new approach to addressing it.

And on public engagement. We are very lucky to have Sam Storey, BBC Food and Farming ‘cook of the year’ finalist, 2018, as one of our team members. His passion for food notwithstanding, Sam has a unique empathy for those that have lost enjoyment in food and a remarkable skill at finding ways to bring that pleasure back. If there was a headline for our research and events it would be that ‘pleasure matters’. With increasing evidence[1] from the neurological sciences, and the advent of a research focus on ‘hedonia’(pleasure) and eudaimonia (satisfaction) in human wellbeing (e.g. the Journal of Happiness Studies) it appears there is a very real reason for the importance of pleasure to wellbeing. Combined with the feedback we get from events and research, we are ploughing ahead with a whole range of ideas of how we can help those that experience a loss of pleasure and find eating a burden.

Over the summer we ran two very successful events in collaboration with the Whitley Bay Film Festival. Two chocolate themed events - a ‘smell-along’ experience of the Spanish movie Like Water for Chocolate, and an ‘eat-along’ experience of Chocolat. They were for general audiences, but at each we introduced the films with information about the research we are doing with Altered Eating. Both events were sell-outs and great successes. You can read a blog about one person’s experience of the first event here. But as with the other events we’ve held in the last year or so (flavour masterclasses for example) we invariably discover something new, meet someone who is affected and distressed by altered eating difficulties.

Cook Sam Storey and Dr Duika Burges Watson: raining chocolate for the film festival

Our first serving during Chocolat was the most delicious hot chocolate timed perfectly to coincide with the moment Vianne Rocher (Juliette Binoche), an expert chocolatier, opens her shop in a conservative and austere rural French village. At 24 minutes in she serves hot chocolate, prepared with a ‘special kind of chilli pepper’, to the disbelieving Armande (Judi Dench), her elderly, eccentric landlady. With the first sniff and taste, Armande is emotionally transformed from bitterness to joy. For most of the movie-goers, the hot chocolate Sam had prepared was indeed a joyful experience. However, in presenting it to one person they told me “no thank you, I don’t like chocolate”. At first, I was perplexed, why pay for a chocolate eat along film if you don’t like chocolate? But then, in our research we’ve experienced this before, participants who didn’t want to participate in ‘eating’ at food play events (or not at first anyway). A reminder that food is more than about eating and that the commensal experience of being together with others matters too.

But chocolate is a little unique in terms of eating pleasures. As Professor Barry Smith, a member of the AE Network and expert in the sensory and hedonic elements of food notes, chocolate is for most, a hugely pleasurable experience that is both about flavour and texture, “the pleasure of anticipation and the reward in eating it match up. The aroma and the taste are the same. And that matters because there are two sorts of pleasure ivolved. When you start eating it, turn it around in your mouth to get the melting quality which strokes the tongue. Receptors in the tongue then respond to this stroking and it's a different feeling from touch. That's why we love a velvety wine or double cream - it's the feeling on our tongues”.

Ah yes, no wonder the tea didn’t ‘taste’ right.


Reference:

1. Kringelbach, M.L., 2015. The pleasure of food: underlying brain mechanisms of eating and other pleasures. Flavour, 4(1), p.20.

Christmas dinner: a pleasure not to be underestimated

Posted by Duika Burges Watson, Fuse staff member and Lecturer in Evaluation and Policy Interventions, Centre for Public Policy & Health, Durham University

The final event for our research project exploring the potential of progressive cuisine to improve quality of life for head and neck cancer survivors was a Babette’s feast of sorts. Babette’s feast, the novella by Isak Dinesen (Karen Blixen), centres on the story of a most remarkable and transformative meal. In a remote and austere community in Northern Denmark, Babette cooks up a storm for the abstemious community. A religious cult denying all pleasure, the community is reluctant to eat anything that might be ‘wickedly’ enjoyable. Finally convinced of Babette’s desire to thank them for their support at the time of her father’s death, the French trained chef is permitted to use some new found wealth to prepare a sumptuous feast. During the multiple courses, the community is existentially transformed. Their enjoyment and love of life and feelings of well-being become undeniable as each delicious course is presented, despite their efforts to pretend otherwise...

Courtesy of amazon.co.uk

With our Christmas dinner, we didn’t set out to do anything other than thank the participants for their involvement in the research. We knew from our qualitative food play workshops (25 in all) that participant survivors missed the opportunity to socialise around food; their difficulties with food and eating (including swallowing, speed of eating, limited food choices, and fear of choking) made a ‘normal’ eating out experience unlikely[i]. So we invited the project’s Research Chef to prepare a Christmas meal that we hoped they would enjoy.

The tasting menu, or menu degustation (below) was designed as an adventure in dining, in which multiple very small courses make it easier to undertake - when you know that if you don’t like one, there are plenty more before and after to select from. The delightful setting at Irvin’s brassiere on the North Shields Fish Quay provided an opportunity for survivors to dine out, at their pace; to select from a range of dishes, and to enjoy some of the foods we now knew would be acceptable (with a diversity of eating difficulties, increasing options would ensure there was something on the menu for everyone). What we hadn’t anticipated was how much they’d enjoy the leisurely three hour lunch. Unlike the diners at Babette’s feast, survivors of head and neck cancer do not deny the pleasure of food, it simply may not be an option.


The menu that was offered to participants

Our Resources for Living research has centred on the potential of using some of the progressive cuisine techniques derived from the new ‘science of deliciousness’, an interdisciplinary approach to understanding our sensory perception of food with input from physics, chemistry, neurology and psychology[ii]. Chefs around the world are gaining insights into food in ways never before explored, and we developed the interdisciplinary research project on the assumption that some of these new understandings might improve quality of life for those living with the long term altered eating side effects of cancer and its treatment.

Our research, and the research of others, has showed that the loss of pleasure associated with food can be ‘almost unbearable’. Recent research in neurology suggests that there is one ‘pleasure centre’ in the human brain. In other words, “the pleasure evoked by food is remarkably similar to that of other rewards, suggesting a unitary pleasure system, whether engaging with food, sex, social or higher-order rewards”[iii]. In our research, finding ways to improve quality of life is intimately connected with the loss of pleasure. While we uncovered some ‘compensatory pathways’ such as participants finding pleasure in cooking for loved ones or engaging in exercise, the ability to eat a nine course meal appeared to do much more than just provide satisfaction. Participants reported feelings of well-being and happiness that they’d truly missed, some for years.

For our Christmas meal insights, thanks must go to Sam Storey, our brilliant chef on the project, and to the team of researchers and survivors involved who together have worked to understand, and find ways to manage, the challenge of living with altered eating difficulties.

Resources for Living (R4L) Pilot: Exploring the Potential of Progressive Cuisine for Quality of Life Improvement for Head and Neck Cancer Survivors is funded by the National Institute for Health Research (NIHR) Research for Public Benefit (RfPB) programme.

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[i] Wells, M., 1998. The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment. Journal of Advanced Nursing, 28(4), pp.840-848; Cousins, N., MacAulay, F., Lang, H., MacGillivray, S. and Wells, M., 2013. A systematic review of interventions for eating and drinking problems following treatment for head and neck cancer suggests a need to look beyond swallowing and trismus. Oral Oncology, 49(5), pp.387-400. 

[ii] Mouritsen, Ole G. "The science of taste." Flavour 4.1 (2015): 18.

[iii] Kringelbach, M.L., 2015. The pleasure of food: underlying brain mechanisms of eating and other pleasures. Flavour, 4(1), p.20.