With our recent reflection on Attitude During Treatment for head and neck cancer, this was a timely interview to dive into the lived experience of going through treatment and how it impacts a person's relationship with food.
Like everyone, Michael experienced his own journey from diagnosis, to treatment and through to survivorship. From what he described as "having it all" before he found himself chasing a diagnosis, to reshaping his perspective and outlook to manage his symptoms from treatment, Michael has a wealth of insight and first hand experience to share.
While the plight of treatment and it's side effects remain at the forefront, there is a subtle undertone that hints at a fortuitous outcome that can only result from a life's long reflection and seeing things in a whole new light. Michael continues to see the positive in his long term changes, both physical and lifestyle, and is assertive in every aspect of his health. His motivation and commitment to himself and his health is both motivating and inspiring, and it's no wonder that he doesn't let dysphagia stand in the way.
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So, tell me, how did you come to acquire Dysphagia?
I got cancer. I got cancer, I had cancer in the tonsil. Now, that's an interesting story within itself. I kept on going to people. I went to a doctor’s. I did blood tests, “No, you're all right.” I went to an… they said, “go to a dentist.” I went to a dentist. Nothing, they decided.
They wanted to pull out a tooth. So, I don't really know if it was necessary, but that's another story. And… okay, I let it go. But there was something wrong and one time, I think I was on holiday, and it was around Christmas time, and I thought, I've got the time. Because I used to be flat out working and just busy living life, I guess. I thought, no, this isn't good. I've got to go to a doctor's. I'll go to a different doctor's.
I went to a different doctor's and he was on it straight away. He says, “oh, you need to go get tested” Blah, blah, blah. We found out that I had cancer and basically, because of the treatment I got, I'd say it was the radiotherapy, there's, well… my throat's been wrecked. As a result of it. It's, you know, it’s done a lot of damage. And that's the way it is. So, it affected my swallowing.
So, is that something you continue to have difficulty with?
Well, yes. But… But, well, I do have difficulty, but what I found is, life's about adapting. I've adapted, so it's become the new normal. So, really, it ain't a problem because I've worked out how to deal with it. So, it's just that it's a new experience. It's a new way of continuing my life.
And so, if you've had to adapt, how did it change your life that you had to adapt to it? How do you feel it impacted you?
Basically, it's about how I eat and what I eat. So, I've had to organise meals that are a lot easier to swallow and if it's hard to swallow, well, at first it was always, I'd have to have a drink with it.
And it couldn't be like a watery drink, it'd have to be like a milkshake.
A thick shake.
A smoothie.
And that gave the right consistency to just about eating anything because you couldn't… Well, you could just about eat anything as normal, providing I've got a, you know, a thick shake.
And that still sort of continues with things like meat. Unless they’re in a really sloppy stew or something like that.
So, what have you found has been the biggest struggle, either during or after treatment related to eating and drinking?
I don't know if there was any, well, one stage, I was losing a lot of weight and eating took a long time. So… and I was really having to force myself to get all these foods in because I kept on, sort of, losing weight and I was getting to be concerned.
But what I think we found out, and it's still an experiment as we go along, is my thyroid was out of whack.
So that was contributing to the weight loss?
I believe so. So, we're still in the process of determining that.
And when we say we, it's more or less I.
Because I'm in charge of my own body, and you know, like you go to a doctor, any of these people, obviously you've got a whole lot of patients. They can't keep up with you. You've got to be your own doctor to a certain stage.
Advocate?
Yeah. Like, you can't expect other people to be fixing the problem you've got. You can actually use them, but don't expect them to give you the miracle pill. It's not going to happen.
So, kind of, you have to be accountable for taking care of yourself.
Exactly. You're going to be accountable full stop.
In fact, the reason you probably got the condition in the first place, whatever it may be, is that very reason.
And what would you say has brought you the most joy through that process in relation to food and drink?
Well, in relation to food and drink, nothing's really changed. Except I used to drink a lot of alcohol. Right, and the change there is you're drinking too much.
And not only that, there was time to do a bit of a cleanup, I guess.
In essence, the whole experience was… well, you're doing something that ain't working for you. You've got to change it.
And have you always had a close relationship with food and drink?
Yeah. I've always been conscious of what goes in my mouth.
Like I was saying, with the drinking, I think I just got a bit carried away. Too far one way and we moved from moderation to excessive.
Or indulgence.
Yeah, and I had to be brought back in balance.
And did that relationship change with dysphagia or you just kept your same approach through it?
Well, I've always tried to eat as healthy possible. You know, if anything, I believe it's probably contributed to being sort of… going through the whole process of treatment and everything and really it’s not affected me so much.
I think because I already had a good foundation, it helped me along.
It kind of holds you in good stead for whatever you need to go through.
Exactly.
So the only (real) thing that's changed is I've had to get a little bit more experimental, which is exciting because I'm always trying different foods and meals to accommodate my throat. Whereas before, although I might’ve tried different things, etcetera, etcetera, I was stuck in that
pretty much the same thing every day, sort of lifestyle.
So do you have any advice or tricks up your sleeve that you'd recommend to other people going through the same thing?
Yeah, really, the advice would be; try and eat natural foods, get away from processed foods completely. They're lab foods.
They weren't created for you. They were created for people who wanted to sell them to you. That's the way I'm looking at it. Go as natural as possible.
You're never going to get completely natural because insecticides and pesticides are in everything and organics (are) quite expensive, so if you can go organic, great, but chances are you've got a budget and sometimes it can just be too much.
Do you find that in buying natural foods and obviously starting your meals from the very beginning, like cooking from scratch, has that made it easier for you to do what you need to to make foods that are suitable for you?
Well, I've always done it, even prior to this, I've always more or less eaten that way. So really, I guess one of the things I like to do is keep meals as simple as possible. When it starts getting a bit complicated I start losing interest because it doesn't highlight the actual food I’m eating.
The more things you're adding, it starts getting a bit complicated… Not really my style. Let's keep it simple.
What is your favourite go-to meal or snack?
I've got to be honest with you. There was more to the story about the advice. The more I've looked into the subject of how your body works, etcetera, etcetera, getting more information, (I’m) far from an expert, right… on autophagy.
What's that?
Autophagy is when your body starts eating your body more or less, but it starts with the crap that's in your body, right, it's a way of cleaning and it happens through fasting.
So when you say which meal am I looking for my go-to meal, I usually have a 16 hour fast, which is 8 hours to eat, 16 off.
Now, I will change. Sometimes it might be- oh no, look, I'm going to try a 24 hour fast once a week.
The point I'm making is you've got to find out what suits you and you've got to do your homework. If you're not prepared to do your homework, don't expect to get a good result. It's that simple, because if you're going to rely on everyone else to help you, you're no better off than when you started.
The whole idea is you need to do some lifestyle changes to get your body where it's meant to be. It was out of shape.
That's why you get diseases.
That's why you get something wrong with you.
There’s a saying, you reap what you sow. And there's no two ways about that.
And that’s how it happens. If you don’t sow anything, nothing happens.
So having done your research, and with your fasting, and obviously figuring out ways to problem solve your swallowing difficulties, what is your favorite?
… That's good for you, your favourite.
Well, like I said, everything's the favorite because I'm hanging out because of the fasting. I'm just hanging out to eat. I just look forward to eating. It's fantastic.
However, one of the things I've come across lately, which I'm really enjoying, is overnight oats. Right, absolutely loving it. However, because of my research… and this is a problem with the internet, there's too many people that have become know-it-alls out there, and really, most people know very little. They- in fact, next to nothing. Because you've got to realize that people have been around for a long, long time. No one knows everything. But everyone thinks they know something. And this is the big problem with people. They've become know-it-alls. But that's another story.
So, yeah, overnight oats.
But I actually have them of a.. I’ve started having them of a night now.
Because apparently it helps you sleep, right, and there's a whole lot of other reasons for it.
Well, we're not saying a whole lot of other reasons. There's other reasons that made me start trying to have them as the last meal instead of the first meal but the things you can put in them, and yeah, it's just, it's like having sweets.
Yes, isn't it?!
It's...
Oh, you obviously have them.
I’ve had them, yes.
Right. Oh, yeah. So… Yeah, that's my sort of go-to meal at the moment. Even though it's not immediate, it's something I really look forward to. But then again, like I said, because I do the fasting, I look forward to all meals.
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A big thank you to Michael for taking the time to chat with us and share his experience. For those seeking support in relation to cancer treatment or adjustments to life during survivorship, you can visit the Australian Cancer Survivorship Centre website.
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