It’s not about the cookbook but more about the recipe.

Physical versus mental constraints following head & neck cancer treatment.

This is a transcript (Excerpt) from my podcast The No Feeding Tubes Show Episode 5.

I’ve been listening to a podcast called The Swallow your pride podcast, which is hosted by a speech language pathologist called Theresa Richard.
I found a really interesting episode the other day, and she was interviewing a woman called Brittany Krekeler.

Brittany had some really interesting things to say. She was doing some research around some of the mechanics, the physical mechanics, if you like, of swallowing. Brittany made a really interesting comment or statement. She said, It’s not about the cookbook, it’s about the recipe. And that really resonated with me, I went back a couple of times to replay that one little section that she spoke to. It’s about the cookbook, it’s not about the recipe. And she was referring to the combination of multiple approaches to complex problems with swallowing. And if like me, you’ve had the radiation, the chemo and the surgery, and you’ve had lymph nodes removed, tongue removed and tumors removed. In that small, very delicate area, you know, too well, how finite things are with food, textures, and flavors.

And so it was really interesting for me to hear, Brittany speaking like that, it’s the first time I’ve really heard one of the medical team refer to the treatment like that. And it was very much in line with the way that I thought following my treatment with head neck cancer eating, following all the treatment. So I want to talk about three areas that I think fit into that recipe. Process if you like, as opposed to the cookbook, the cookbook is about the the whole process.

The recipes are all the little things that I did And I know others do, to make that journey back to swallowing and eating your best food life possible.

And when I talk about the conclusion here, I’ll go into a bit more detail. But one of the things that is things that really bothers me is this process of social media, where people are throwing ideas and thoughts out there. And I think that’s really dangerous. I think you need to as a patient, particularly, have a really full understanding of all the components of your recipe. And it’s like cooking, if you’re new to cooking, and you want to create a new dish. And it’s one of the things that you’re taught in college, you always always always read the recipe through from start to finish. Reading the recipe, through from start to finish means that you get an overall snapshot of the things that you need to be successful in creating that dish. I think that applies to this whole head neck cancer treatment process when you’re trying to get back to eating your best food life again.

So you know that there are physical and mental constraints that you need to take into account. Like the ingredients in a recipe, I think you can apply these ingredients to the process of your rehabilitation to getting back to or eating.

The first thing and seems to be the most prevalent amongst all of us is trismus and dry mouth. And they’re in my experience the two things that firstly created barriers for me in eating one I couldn’t open my mouth. enough to get a food utensil with food on it in there, let alone one finger. Trismus that came as a real shock to me, I didn’t know no one told me that, by the way, you’re likely to experience this. And when it came, and when it happened, it was frightening. You know, it was like, Wow, am I ever going to be able to open my mouth again, and I talk about trismus, quite specifically in another episode on one of my Facebook videos. But in the end, I devised my own jaw crank, if you like. And I used those wooden tongue depressors that they use in clinicals settings. And I just I measured my mouth opening what it should be. And if you don’t know how to do that, you’re basically most adults should be able to put three fingers vertically in their mouth between their teeth. So you should be able to fit three fingers height wise in your mouth.

So I measured by three fingers, and created a stack of tongue depressors rubber band around it, put numbers on it, and set myself the task using a timer on my phone to basically Jack my mouth open. I’m not going to pretend it didn’t hurt. It was one of the most painful things I’ve ever done in my life. But I persevered with that. I did it every day. I kept making sure that I had that mobility in my jaw. Eventually I began it because if you don’t have that opening you have a tendency not to eat, trismus affects not only your mouth opening, but your ability to chew. It puts you off wanting to try to put any sort of food on a utensil and pop it in your mouth. So that was the first thing that I noted and managed. I set myself up a task of every day, twice or three times a day. I sat there and I held my mouth open with that homemade Jack.

4 stage PEG transition
My finest hour!

On my YouTube channel is a video of me actually doing it. I’m crying because the pain was extraordinary. I will say you have to work with your medical team to make sure that that pain is under control. Or at least you’re being medicated for it before you try any of this, I think it would be torture without having some pain, preventative measures in place. So work with the speech language pathologist on that and work on your trismus because the other beautiful side effect is dry mouth.

Dry mouth, you manage that with all those products that are out there xylem melts and use the appropriate toothpaste and mouth washes that lubricate. Those xyla melts, I found were really good. They’re like a little button tab that you put on your gum. They had just been launched when I was going through this. So I was a guinea pig with those but I really couldn’t support using them enough. Obviously drinking water constantly, and ensuring that you’ve always got water with you and that you’re staying hydrated.

There were physical issues, but equally, they became mental issues and constraints as well. So that’s about the time I started thinking, Okay, this is not just a physical process. I’ll preface this by saying I’ve been a fairly active and physical person my entire life. I’ve always done yoga, I’ve always run or walked or Bush walked or hiked, or surfed or swam or lifted weights or kickbox have always been physically active. I danced in my earlier years I was a ballet dancer when I was a little girl and that went through till I was about 13 I think from memory. So that commitment to practice and keep going and trying and regulated exercise was in built in me. It’s really important, I think. It helped me in this journey enormously. Get through these difficult physical and mental times. So if you’re not an exerciser, now’s the time to start thinking about that. Even if you just commit to walking every day somewhere, you’d be amazed at how much that helps. Because as we know, although there are physical barriers in this treatment, there is an awful lot of mental in it, as well. And by that, I mean, I think it’s very, very easy to become incredibly depressed with this whole scenario. And depending on what you’re going through, I think it’s paramount that your mental health is of equal importance as your physical capabilities.

I don’t think that’s addressed enough in this process, I think it is a huge part of our healing. I think it’s a really large part of getting through the treatment, first and foremostly. The second part is then getting on with the process of learning to swallow again, or starting to swallow and work out what your new eating life is going to be like.

The third bit is actually getting on and doing that. Then having a life again, in terms of whatever that might look like now. So that was the second point that I think is that physical and mental constraints of eating, keep a check on depression, anxiety, fear, and failure. Those things all come part and parcel of your treatment journey. They certainly did in my experience. They’re areas that are not addressed for patients. I think it’s super important for those areas to be addressed and how I manage that was by keeping my physical activity up. I Bush walked I mean, I’m very blessed that I live very close to some of the most beautiful bushland in Australia and kangaroos and koalas and early morning walks, and I went on my own because I needed that time to mentally digest what was going on with me, and particularly what life was going to look like for me now. It’s a grief, you got to grieve it.

Fresh air and walking got me through the worst times.

You’ve got to face the grief, the fear and the anxiety head on. You’re gonna fail in some aspects. And I talk about that in my program in the Mind Food Body program, about failure aspects. We all will fail at some point with some thing. For me, I recognize that day when I was just trying to eat plain chicken soup. I don’t even think it had noodles. It resonated with me at that point, how difficult and how many steps forward and how many steps backward this process takes.

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