I was fortunate enough to cross paths with John while he was recovering from treatment for his second bout of head and neck cancer. At the time, I did not know it was his second time battling cancer nor did I know his story and how his resilient and ambitious nature had served him through great changes and challenges in his life. He was kind enough to sit down with me and explain how his creativity in the kitchen and love for trying something new got him through some of these changes and how he manages to keep things interesting as he continues to live with dysphagia since his last treatment.
John manages a soft diet and finds that fruit smoothies and his age old favourite, a bowl of oats, goes down well while trying to keep up calories and nutrients while also substituting a biscuit or two for an after work snack. However, John did touch on some of the more challenging impacts of dysphagia such as his now limited social life. He explained that he often feels that people look at him while he is eating in public and that he is more comfortable cooking his own food at home. There’s also the risk that the food arrives at the table which can’t be easily and safely eaten because he says his food must be soft and can’t be dry, he only eats minced meat and still needs to sip a drink during his meal as a safe swallow strategy.
Until you hear John speak, it’s hard to understand how such life threatening and life altering circumstances can pale in comparison to his determination and resilience. “You have to deal with it,” he says. John explained his memory of receiving a diagnosis of head and neck cancer- both times- and described it as “an emotional minefield.” He explained that when you’re faced with your mortality and you’re wondering whether you’re going to live or not, your whole life stops. “What you were doing before doesn’t matter anymore”. John said his biggest breakthrough, both times, was surrendering to the unknown, knowing that he couldn’t control the outcome. As a result, John described his first diagnosis of cancer as the first time in his life that he made big changes but humbly reminded me that “there’s always someone worse off than you.”
Although John has battled and survived head and neck cancer twice in his life, he has only acquired dysphagia the last time round. John described the larger impact of dysphagia as “a big change in life, to not be able to eat the same food as others.” Having experienced various severities of dysphagia and managing his modified diet independently for some time now, John explained that it’s important to keep your food on rotation and always have a “pairing” to keep things creative and interesting, and to keep up his appetite.
Have a read below for a more insightful take on John’s relationship with food and his journey through head and neck cancer, treatment and dysphagia.
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Can you tell us a little bit about how you came to experience dysphagia?
I think I had to have- a mass operation. I can’t open my mouth and I’ve lost my jaw and I’ve got part of my bone off my leg sitting here [points to his jaw line]. There’s 6 weeks of radiation. I had more trouble with the radiation than I did with the operation. When I finished I was bleeding around the neck here, [points to his neck] I was bleeding around here and I sort of coughed one day there and all my throat was affected by the radiation. I had a bit of blood mucous in the throat. And that really affected me, that’s when I had trouble trying to swallow.
With the actual throat part of the swallowing?
Yeah.
So that was all during the radiation?
Yeah. And after. Yeah, it’s taken a while to clear up. But I have another friend at home and he’s had the same thing and he’s (had) radiation down the side of his neck and he’s lost all of his appetite as well.
Would you say that your experience of difficulty chewing and swallowing was different from the surgery, different during radiation and different now?
It definitely changed when I had my radiation but I was living on soup. Tomato soup, you name it.
Anything soup?
Yeah, soup. So when I first came out I was just about living on soup, I dropped a fair bit of weight then.
Did you get any mucositis in your mouth?
Yeah, yeah that cleared up. I think- the food, I had to have that soft food or the soup or whatever I was having- have it very very slowly. You can’t eat fast, you’ve got to have it slowly. Definitely just got- I’ve got to open my mouth a bit more and the radiation started to go away and as time went by it just got a little bit better and a little bit better. I can feel myself getting better. Even in the neck, you know. Even now, I can feel the pulling sometimes [touches his neck and jaw] and then the next day I can talk really clear- you know, “this is good”, and then the next time I’m back to where I was. You know, up and down all the time.
So it’s a bit of a process isn’t it.
Oh, it’s going to take me a long time, they’ve told me it is a long road ahead. Yeah, I’ve just got to- (I don't know) what’s going to happen whether I can get my jaw right down, in time- Time is going to tell.
Do you think having dysphagia impacted you dealing with your treatment or your experience of treatment?
It probably did to a certain degree. It definitely impacted me but there wasn't too big of an impact to start with. After a while you-
You get used to it?
Yeah, you sort of get used to it. But yeah, I think you have to learn to live with it. I think it’s probably like a lot of things in life, you have to learn to live with it.
I was going to say, you sound like a pretty adaptable person.
Yeah, you have to. With my family situation, being an orphan, I’ve had to deal with all these problems from a very very young age, and that’s the way I grew up. I had to deal with them. Confront the issues. Well, you have issues as you go and you have to confront them as you go. That’s a part of normal life.
And the same with the dysphagia and the cancer?
Yeah, yeah. It’s not a very nice thing to go through but anyway it is what it is. I can’t change it and I’m lucky to be alive. I’m doing okay so- Like I said, it’s not the end of the world.
Were you able to make a full recovery or do you still have some lingering difficulties with eating and drinking?
I’ve only got small- I’ve still got issues but they’re mainly small issues. It’s just little things. Yeah, sometimes if I want to take a supplement or something like that I’ve got to tip my head back and then I get stuff pulling in my face here, it’s very tight here [points to neck and jaw].
So you’ve got to backwards head tilt to get your medication down?
Yeah, sometimes if I want to drink really quickly I’ve got to tilt my head back [tilts head backwards]. If I want to drink this way [moves head to neutral position], I’ve got to drink slowly.
And you mentioned before about cutting your meat up really small, adding sauces and gravies, the water.. So you manage but you have to do all of these extra little things?
Yeah, yep.
Did you find that there was an impact on day-to-day life when you had to change what you were eating and drinking?
Yeah, probably. Oh well, yes. I think it would impact anybody. You know, when you come out of hospital it will change a lot of things but I think the social life- You can’t go out. You go out and everyone starts staring. I was in a bit of a mess when they've first seen me and people start looking at me and it’s like I can’t talk properly, and you try and talk to someone- I can talk a bit clearly now but back then I couldn't- I found it sort of hard to even talk to somebody. You have to talk to them slowly. You go to the supermarket and then people can’t understand me. I’ve often had, you know they say “I can’t understand that," you know. I’ve had to sort of adjust myself to that. That was probably the biggest impact. Going out and enjoying yourself and having some of that food that you like, you know. You still can’t do that. As I said it’s still more comfortable being in- when you get it yourself, then home. People don’t know sort of what you want, and you say to them “I’ll have some scrambled eggs” but when I cook the scrambled eggs they’ve gotta be really- I can’t sort of have them really thick they’ve got to be sort of nice and soft and just-cooked, and fluffy. And people sort of cook them and they’re too hard and as soon as they’re too hard, I’m having trouble and it’s just cooked by themself and it’s things like that.
Do you find yourself socialising less now or in different place?
Oh yeah, yeah. Less now, yeah. I don’t go out very much at all. I’ll go out to the club a few times, I’ll go to the football when I’m home or things like that but not as much as I used to, yeah. I used to go out every Saturday night or do things on the weekend but now I don’t.
On the weekend I’ll be doing things all weekend like going to the footy or- things like that and going to the club but yeah, I don’t sort of do that much now. It’s just impacted my social life, there’s no two ways about that.
What about your confidence? If you don’t mind me asking, do you think it changes or it doesn’t bother you?
It’s probably-well, there’s no way- You know, I’ve never been sort of over confident but after the operation it’s probably a bit the other way. I’ve been a bit of- a bit less confident, it’s just the talking to people and sort of socialising. I haven’t got the confidence I used to have. You know I’m at the football, I said “I’ll have a can of coke” and there’s a young girl up at home there, (there are) kids only about 5 years old and they all let them behind the canteen, and I said "I’ll have a can of coke," and I had to tell her about three times, this 5 year old kid. She couldn't understand me.
So it’s more the talking for you than the eating and drinking?
Yeah, the talking, yeah. Probably talking, probably food in a lot of ways.
It is a way to connect, isn’t it? When you’re out eating, you’re talking over dinner.
Yeah.
Do you think dysphagia changed your relationship with food, either temporarily or in the long term?
No. No, I’ve always enjoyed my food. Even though I’ve got to do it a different way, eat a different way. No, I’ve always enjoyed my food. I'm not- I’ve never been fussy with my food.
It sounds like you won’t let it stop you enjoy your food.
No. I've always enjoyed my food like that.
When you did initially have to change your food, and even now I suppose we’ve spoken a bit about what you still do to manage your soft foods or even your normal foods. Did you have a go-to meal or did you have a process that you went through to make that food okay for you?
Well, I suppose-I just had to adapt. There’s no process, I thought "well, now I’ve got to do this, I’m gonna do it."
You just accepted it.
Yeah I just accepted the way it was and then- you have to move on with it. Even though it’s a lot to swallow. I found, the time now that it takes me to cook the food is so much more slower. You know, (I used to) just come home and grab this- in and out of the fridge. Eat this, eat that.
Have a biscuit. Well, now I can’t have crackers so if I’m having a biscuit I’ve sort of got to dunk it in my tea and things like that. Yeah so, you just have to adapt.
Do you have a favourite meal that you go to or did you have a favourite meal that you went to that was just soft and moist and easy?
Yeah, I think porridge. Yeah I’ve had porridge just about all my life, I’m a great believer in oats. yeah, they’re very very healthy for you and I’ve had them for about most of my life.
Ever..
Yeah, it feels like that.
I put half a cup of oats in a plate and then I get 3/4 of a cup of soy milk (and) put that on (the oats) and put that in the microwave for 90 seconds. Take it out. Mash up a banana or get some other fruit, so three pieces of fruit or banana or something like that. Put that back in (the oats), stir it up. Put it back in the microwave again. You've always got to cook it twice. I like it a bit creamy and I find if you cook it twice, it breaks down- just a little creamy. So I put it in a second time and get it out and (if) it's too hot, I just get some more oat (soy) milk, (put) a bit more milk on it, and cool it down a bit. Yeah, a bit more creamy. I like it creamy.
I love it, I love it.
Sometimes you go, "you know what, I don’t want to slave over the stove for a couple of hours to make this soft. What can I make that’s quick and easy?" and if things like biscuits are off the table then, you know, that’s a really quick option.
What would your advice be for someone who has recently acquired dysphagia or someone caring for a person with dysphagia?
Someone (who) cares for someone, if they’re doing the cooking, depends on how bad it is. I’ve never seen someone who’s really bad with it- you probably have, I haven’t. I would imagine they have to cook fairly soft foods. I think back in the hospital, I was on those “Ensures"- they were a big help.
So that’s the dietitian’s supplements.
Yeah, those were a big help. And perhaps make sure your meals aren’t really- not too big. Probably only have smaller meals but more of them, maybe. Maybe instead of three meals a day, you might go to four. Have a light breakfast and then something light at 10:00, then a light lunch and something at 3:00 and then maybe a light tea. When you have your tea, you should have it about 5 or 6:00, you shouldn’t have it later. If you’re finishing you tea at 9:00 or 10:00 at night, when you go to bed, your body is still working to digest that food before you go to sleep. I was told to have tea about 6:00 and sometimes I’d do that, have an early tea and then go out and do something- work it off.
Try and partner your food, I think that’s probably my most important thing is to find- make sure your food is partnered. Now if you’ve got your minced steak, make sure you’ve got- yeah, your mashed potato and your mashed pumpkin and your mashed spinach. Put that with your steak. Don’t try and eat just vegetables by itself. It just gets so boring. Make sure you partner all your meals and you can do it much more- it is so much more easy to eat and I think you will probably eat more by doing it that way. When you can’t find food to eat properly you get very tired of the same old thing. When you can find something- go to the shop, you might find something you can eat that’s completely differentand most times you’ll go home , and with me, when you go home and have it, you tend to enjoy it more. For example, I went to the shop and there was some lasagne there. Well, I can eat that, "that sounds alright." So, sometimes I'll get that. I’ll take that home and then I've got some steamed vegetables and I'll put that with that. Just things like that, don’t try and eat the same old, same old thing all the time. I know I do with porridge. Same old thing, same old thing all the time but- the other things, I can’t. I’ve got to rotate them around.
Smoothies and- I think that’s a good one, I reckon. Anything, just all the fruit. Just go and grab it, you know. I put a full orange in, and I cut a piece of peel off the orange and I put that in as well. Chop that up as well. They reckon that’s supposed to be very good for you as well.
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Stay tuned for one of John's go-to recipes ✨👨🍳
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