In the following we present the framework (Fig. 1) as it emerged from the thematic findings and follow up stakeholder events. We provide representative quotes from survivor participants to exemplify each area. To put these in context we have given the reader some essential references to explain issues such as impacts on the swallowing mechanism, and key dimensions of flavour perception. The first three elements – the anatomical, functional and sensory changes – are fairly well established in the literature, and most of the research tends to focus on these aspects. There is, however, less emphasis on the phenomenology (as opposed to the physiology) of altered functional and sensory experience, and very little on the behavioural, cognitive, social and emotional elements.
Over the course of the study a total of 25 participants and their partners were recruited. The participant survivors had all received (chemo)radiotherapy as treatment and were 6–60 months post-treatment but with on-going difficulties with food and eating. The majority (n = 14) were males between the ages of 54–65. Participants came from a diversity of socio-economic backgrounds but with similar cultural links to the North East of England. Over the course of the workshops a number of participants (N = 5) were lost to the study due to ill-health or death. Not all participants were available to attend the final two summative workshops. Present at both summative sessions were survivors (N = 10 Group 1 R1-R5, Group 2 R1b-R5b) and partners (N = 4), two social scientists, one health psychologist, one chef and a documentarian who recorded the sessions. One of the head and neck cancer survivor participants was also part of the research team and had received training in qualitative methodology.
Anatomical: The anatomical structures required for eating are altered.
All of our participants had changes to the throat, upper oesophagus, salivary glands, mouth, tongue, teeth and/or other structures, which impacted on the movement of food from the mouth to stomach, and/or increased the risk of choking.
R3b: They did one of those video swallow tests and it materialised that there was like a web growing across my gullet, so that was the reason why it was becoming more difficult, so they did a gullet stretch, which initially was good for maybe about a week and then it went back, then I had another gullet stretch and at that one I had real breathing difficulties, so because of that he doesn’t want to do anymore gullet stretches and gradually it’s become more and more difficult to swallow anything.
These changes are often a result of the treatment rather than the cancer itself:
R1b: They were going to basically fry my saliva glands on the right side.
From the literature it is known that the severity of swallowing problem will depend upon the extent of the disease, the structures involved and the type of treatment . For example, surgery for a tongue cancer will involve removing important swallowing structures, leaving additional spaces and sumps (holes where liquid/food collects) within the mouth:
R2b: With me it’s under my tongue, because they took a slice off my tongue and I’ve got that cavity where it [food] can sit and I can’t move that part of my tongue.
Almost all head and neck cancer patients treated with radiotherapy experience mucositis of the mouth and throat, which can make eating and drinking extremely painful . Damage to the salivary glands results in xerostomia, or dry mouth .
R3b Whatever I eat has to be accompanied by lots of liquid, which also dilutes the taste of the food, which is another thing.
In the long term, xerostomia increases the likelihood of dental caries and tooth extraction, impacting on the ability to chew and, potentially, in tooth loss:
R4: Mine snapped off when I was trying to eat.
Post-treatment oedema can reduce the natural ‘drip trays’ of the swallowing mechanism, increasing residue and the potential for aspiration making the act of swallowing difficult :
R3b: Gradually it’s become more and more difficult to swallow anything. I do eat what I can, but it’s a huge effort, it takes ages.
Functional: The act of eating is altered
Swallowing is a highly co-ordinated, continuous and complex sequence of motor and sensory behaviour. Both cancer and its treatment can significantly alter swallowing physiology [33, 34]. Besides these purely anatomical impediments reported above, participants also experienced a change in the co-ordinated act of swallowing. Pre-treatment this is was an automatic behaviour, but now it often required conscious control. In addition, it had acquired the characteristics of a risky and unpredictable behaviour, one which would sometimes work, and sometimes go wrong:
R1b: I’m reminded of the response like when you’re a child and we used to go to the river and jump off a really high bank and there were different high banks and you’d go, one, two, three, go, but your feet wouldn’t move and your knees wouldn’t let you and your head was saying jump, but your body was saying, no way! …. That’s what it’s like when I get that bit of meat in the back of [my] throat.
Participants acknowledged that beyond anatomical alterations, previous experience of choking made them tentative about moving the food bolus from the mouth towards the oesophagus:
R1b: It’s my brain saying, don’t, because you’re going to end up, up the creek without a paddle, blue lipped and I think it’s just my body’s mechanism saying, no, don’t, that’s it, that’s over.
This caution and fear may be increased by surgery and radiotherapy effects, both of which can lead to sensory deficits, reducing proprioception of food and liquid and potentially inhibiting the protective cough reflex, should the bolus fall into the airway . Overall the swallowing process – something that once could be initiated and sustained fairly automatically – has become something the smooth functioning of which could no longer be relied on; one that required management:
R1b: Yeah, see and what I’ve also found after with the treatment was my swallowing, the actual mechanism got very clunky at times.
Sensory: Flavour perception is altered
Flavour should be distinguished from taste. Where the latter comprises the sensory inputs of sweet, sour, bitter, salty and umami, flavour is currently understood as the totality of sensory experience in relation to food and eating, including taste. Multi-modal flavour perception involves a fusion of taste, trigeminal nerve stimulation, sounds, visual cues, temperature, texture and smell that are unified in the act of eating and savouring [36, 37]. This distinction is important as for participants it was not just taste that was altered, but the sensory gestalt (or totality) of flavour. As one participant observed:
R1: There’s a load of triggers for you to enjoy your meal. You go for a meal, right, you go into a restaurant, and first you walk through the door you can smell it, you go and sit down, you look through a menu and you start ordering and it looks lovely, then they bring it to the table and you actually visualise, you see it, that meal and that looks, oh fab, and then you start, it all starts the whole, what’s the, process of having a meal. It’s all and I think you need all of them triggers for you to enjoy your meal properly
Thus when participants talked of the loss of taste, such as “I’ve got very little taste for anything” (R3), it may be implied that it is not just taste but the overall perception of food flavour that is altered. Elements such as the texture, temperature and ‘spiciness’ of food, mediated in part by the trigeminal and olfactory nerves , may become intolerable, for example:
R1b: I remember the first time I tried chocolate, it was like sticking a spoonful of axle grease in my mouth honestly, oh, it’s the worst thing I’ve ever experienced.
R2: Curry was the one thing I missed and was unable to eat at all, because of the spices and the pain they caused in my mouth.
The length of time taken to eat leads to food becoming cold, again altering the experience of flavour:
R4: You can start a meal, you can have a couple of mouthfuls, it goes cold, you don’t want it.
It was also the variability and unpredictability of flavour perception that was reported as frustrating, making eating hard to manage:
R1: Yeah, like I say, sometimes you can have a meal and then a couple of weeks later you go back to the same meal and think, yeah I’m going to enjoy this, and it’s eurgh, it’s totally different and you think, what’s going on like. It’s confusing sometimes.
R5: My taste changes day to day, hour to hour. Sometimes I can taste something, sometimes I can’t.
R1: Sometimes I take a forkful of curry and it’s just, oh, it’s just a bliss sensation, then the second forkful nothing, absolutely nothing.
The research literature suggests that the loss of saliva as a result of xerostomia may affect taste and smell perception, since saliva is used to carry taste compounds to the taste receptors on the tongue via chewing and swallowing [39, 40]. Saliva also performs a protective function ; its absence can increase sensitivity to spicy or acidic foods:
R5: Whatever you buy, like you buy mince one day, a different mince and it makes your tongue burn and then that, when you try a glass of wine with that, that’s even more burning.
Loss of taste and taste dysfunction are strongly associated with loss of flavour perception and therefore enjoyment and satisfaction  leading to diminished appetite, and consequent weight loss . As we shall see later (emotional impact) some participants had lost interest in food altogether as a direct result of changes in flavour perception.
Behavioural: The routines of food preparation and eating behaviour are altered.
Participants reported that their food related behaviour had altered substantially, with regard to planning and preparation, the act of eating, and in terms of “acts of recovery” required to overcome the effects of eating.
In terms of eating, participants frequently described it in terms of effort:
R1b: it’s a chore basically, eating now, it’s a real chore.
Part of what had turned food into a chore was the duration of the activity; eating now took much longer:
R5: My other thing is that I have to eat slowly. It takes … I mean everyone else has finished and I’m still … twice as long.
R1: Which is a big thing and all because once your food starts to go cold it’s even harder to get it down. I’m going to have to tube feed, yeah, I’m just getting fed up with trying to eat, it takes so long, it’s just a chore,
The efforts required to find and prepare something to eat also took up more time:
R1b: I spend hours traipsing round up and down every aisle in the supermarket looking, could I do that, could I eat that, I don’t know, give it a try. You get it home, try it, prep it…
As did the acts required to recover from eating:
R5; And one of the worst things is getting rid of the detritus or whatever you call it. That going out to eat and you have to find somewhere to put the tooth things and clean your throat and that is really socially off-putting.
R1: I do my teeth at least four times a day, at least four times a day, because I don’t want to lose them. They’re in a right state as they are, but it’s only over the last four and a half years that they’ve got like that.
Overall for this group of head and neck cancer survivors, post-treatment eating entailed smaller quantities of food being chewed for longer, associated with increased effort and consequent fatigue. As one participant remarked, eating had become “tiresome” (R3b). This helps make sense of the research that shows that patients intent on weight gain make calculations of anticipated effort of ingestion versus calories ingested and opt for higher calorie/low effort food . As such, ease rather than enjoyment is the criterion often shaping food choices.
Cognitive: The amount and type of thought concerned with food is altered
The increased behavioural labour and concomitant exhaustion was matched by the increased cognitive effort that food entailed, often at the expense of other tasks.
R1: You’re so conscious of it [eating], you’ve got to concentrate so much.
Psychologists distinguish between two kinds of cognitive processes involved in the initiation and maintenance of behaviour : automatic, implicit, processes governing rote and habitual behaviours and reflective processes governing complex cognitively demanding behaviours. Eating is normally an automatic process, or it certainly can be. However, for this group, failure to pay attention to the texture of food within the mouth, and to deliberately manage the act of swallowing, could result in choking and/or aspiration. This resulted in an enforced experience of “mindful eating”; i.e., an intense explicit reflection on the processes of chewing and swallowing. This made eating an insular experience, even in company:
R2: I can’t join in the conversation with anybody else … because I can’t control the food in my mouth and I need to concentrate so hard on what I’m doing, you’re not part of the social group anyway
As eating required increased cognitive attention, so did the planning and preparation of food:
R1b: You do have to put a lot of thought into it and how you’re going to cook it and how much you cook it.
Participants who were still engaged with trying to manage their eating described detailed planning of meals, with each meal being an experiment that required attention and careful monitoring; an experiment that could go wrong:
R1: It looks beautiful and then when you sit down you’ve got to start thinking, how am I going to eat this, how am I going to do this, am I going to have problems. You worry. I worry about what’s going to happen.
Social and cultural: Social participation and social identity are altered
Commensality, or eating together, especially at the same table, plays a fundamental role in creating and reinforcing social relationships . Participants reported alterations in this dimension of eating too:
R1: I won’t go out for a meal now, because I’ve stopped doing that because I had a session in Frankie and Benny’s where I started choking and people just step over you.
R2b: Half the time you don’t want to go out because you feel self-conscious that people are watching to see what you’re up to.
Given the cognitive labour entailed by eating, described above, for many eating had lost its social dimension entirely and become a purely private experience:
R2: The only time I really enjoy a meal now - a meal, a small amount of food - is when I’m on my own and that is the only time.
Losing the ability to eat in public, or even with friends and family, risks destabilising the social foundations on which human relations rest. Participants often reported eating alone, separate even from their closest family. Altered eating therefore inevitably impacted on the patient’s sense of self and also identity. For some, the shared enjoyment of food and food-talk had been part of their social identity:
R2: I think for me it was absolutely massive [the impact of loss of ability to eat with other people], because I loved food, different flavours, different textures, wines…. people used to say that’s all I talked about.
Food, food culture, our sense of self and our social identity are closely linked . Participant R2 was a self-confessed “foodie”; i.e., a person whose social activity and cultural identity were in part mediated by food. These aspects of identity was either gone, or had to be substantially adapted, in a way reminiscent of other “food minorities”:
R5: I always remember going out with vegetarians and you go round ten restaurants looking for something, and I’m like that now!
Specific culinary practices (being a vegetarian diet or a foodie, for example) position the eater within particular communities of practice. Altered eating, and therefore altered culinary practice, deprived patients of an important aspect of their social and cultural identity.
Emotion: The emotional life of the person is altered.
As a direct and cumulative impact of the foregoing anatomical, functional, sensory, cognitive, behavioural and social changes, there was a basic change in the emotional valence of food and in the emotional life of participants. By definition, food and eating are under the control of appetitive drives, i.e. have a valence of pleasure that motivates approach . However, in this group of participants, this approach orientation and its driver of pleasure had been utterly altered. For some it was replaced by an acquired indifference, with concomitant loss of appetite:
R3: There’s no pleasure, so I’m starting to accept that that’s the way it’s going to be.
R3b: There’s very little flavour, so it’s not like there’s any incentive to try, because I don’t get any pleasure out of it….I’ve lost it altogether [appetite]. Yeah, I’m just not interested.
The behavioural and cognitive labour of eating in itself often deprives food of much of its pleasurable component. Food becomes mere nutrition, medicine to be taken in required but unpleasant doses. The link between emotion and food is also directly physiologically mediated. The olfactory system is linked to the amygdala-hippocampus complex; “the substrate of emotional memory” and memories evoked by odour are significantly more emotional than those recalled with visual cues [26,27]. Thus to have an altered relationship to food can result in a reduced ability to access pleasurable states, both past and present.
For participants who were still engaged with trying to eat, appetitive approach and pleasure had been replaced by “carefulness” and “caution” (R1). Food had become a source of danger (see functional section); a chore (see behavioural section); a problem to be solved (see cognitive section); an isolated anti-social experience (see social and cultural section). The overall emotional impact of these altered dimensions of food was considerable.
R1: It’s hard because you know what the stuff tastes like and it’s just been taken away from us.
R2: If it’s going down the wrong way, well maybe I will have to stop, but to say, I’m never going to eat again when I actually physically can eat a little bit, is, well, huge.
R2b: Mentally it has a big effect. It did with me because like I say I’ve seen a psychiatrist and all sorts, because I started going nuts, but you get over it, you get round it, you work with it. You’ve got to. What’s that saying, sink or swim?
A profound sense of loss of pleasure, frustration, sadness and distress were all in evidence. There was, within these groups, a collective mourning around the topic of food. Each participant had adopted a different stance to this. Some were still locked in a struggle with it:
R1: It’s extremely hard because I still refuse to accept it, because I still try food that I know it’s going to choke us.
Others had managed to compensate by finding their pleasures, commensality and social identity elsewhere:
R3: So, it’s sort of replaced what my social activities were of going out for meals with fitness and exercise, which is also good for you.
However, to end this section on a more hopeful note, almost all the participants remarked that the very act of coming together to discuss these issues and experiment with food with other survivors was in itself reparative, restoring some of the pleasurable, commensal aspects of food that had been lost. This finding also begins to indicate how this research might be useful in shaping interventions, a topic we will return to below.