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