Life Unplugged

She lived for food, wine and social events until a cancer diagnosis flung her into the world of dysphagia. Two years post-treatment, Yvonne McClaren has transitioned off a feeding tube and back to oral eating. Here’s how she did it – and how she’s motivating others to do the same.

How did tube-feeding come into your life?

I’d resigned from my job, packed up my life and moved from Australia to Vietnam. I was about to start working on Phu Quoc island running a hospitality business college and I had a really bad sore throat. I just put it down to stress, but I noticed I was starting to live on really strong painkillers. I thought, ‘oh shit, something’s not right here’.

I returned to Australia and, as it turned out, I had a squamous carcinoma, which is a very large tumour, on my left tonsil. They took out that tumour, about 30-40 lymph nodes, both my tonsils and a third of my tongue. That’s why I ended up with a PEG.

How did you respond to this new way of eating - and life?

I, like most people, had no idea about cancer. I really didn’t understand the implications of it. I remember my first speech pathologist looked at me and said: “You do realise that you might have this PEG for the rest of your life?” My heart stopped, and I said, “no”. I could see the reality in her eyes and I thought, holy moly, that’s not good.

So at that point I went, nup. I remember deciding, then and there, that this was not going to be the sum total of my life. At that point I couldn’t swallow water, I couldn’t swallow saliva, I couldn’t swallow anything. I was introduced to the world of dysphagia.

What was it like having a PEG?

I struggled with it and I hated it, passionately. I hated what it limited me in doing from an exercise perspective. I didn’t like the way it looked under my clothes and I kept getting it caught on things. My sister suggested, ‘pop it up in your bra’, and that helped.

It fell out three times and on the third round when I went into hospital, I said: “You know what, don’t put it back.” Then I started that journey back to eating.

It’s really interesting to hear your perspective because my son is non-verbal and can’t easily tell me how it all feels. What was it like feeding yourself with the PEG?

I used to syringe formula up in a big syringe and then attach it and slowly push it in. I know some people are fed off an electronic pump, but that used to make me very nauseous. I had to be super careful about how quickly I did it and most of the time I just couldn't manage eight bottles of formula. So I really did have to teach myself how to tolerate it.

How did tube-feeding impact your social and working life?

It changed my life totally. Before my diagnosis I lived all over the world and ran very big events. Talking, eating, drinking, going to the openings of envelopes – that’s what I did. Let’s be honest, two years post-treatment and I’m still learning to talk again with a fair amount of my tongue removed. I don’t and can’t really go out and socialise in food settings.

The other night was my mother’s 91st birthday and the family all went out, and although I managed a flute of sparkling, I sat on it for three hours. Everyone else ate and I sat on the sidelines and did the bar run for everybody.

I’ve lost friends. Some people who I’ve known for 40 years just can’t deal with it at all – can’t deal with who I am now as a person. It changes you mentally, physically and spiritually. Everything is changed.

When something like this happens to you, you end up in the hurt locker a lot. You end up in a crumpled mess on the floor, bawling your eyes out. It’s unfair, it’s unjust and it’s terrible. But the alternative is not that glossy, either. We pick ourself up and we do what we can do.

Tell me about when your PEG came out. What happened then?

I haven’t had my PEG for over a year now. I had it for 15 months and my transition back to eating orally took about three months. Doctors told me it would be six to nine months and I went nup, no way. I just ignored everybody and did my thing.

It was really important for me to get off that PEG because it reminded me, constantly, of cancer. Of what I’d been through and what was happening to me. I wanted to find some sense of normality, so it was very important for me to get off that PEG and get back to real food.

At this point I could barely open my mouth, so there was a whole process around trismus [sometimes called lockjaw], jaw clenching and not being able to physically swallow. I had to teach myself how to eat again.

I met [singer and oral cancer survivor] Elly Brown online and she said, ‘get on to smoothies’. I hated smoothies but I learned to love them. I started a very slow process of weaning down from eight bottles of

formula, to six bottles, to four bottles, to two bottles, and just kept finding things to put in my mouth so that I could keep weight on and keep myself hydrated.

Did you have support from medical professionals, or did you go rogue?

I didn’t have a lot of support. I got told, “eat high-calorie food, don’t lose weight, and have regular meals”. So I took it upon myself to document what I did and I tried to make it a really clear, step-by-step process. This gave me some focus and some purpose, too.

What did teaching yourself to eat again, with smoothies, look like?

I had to work out what I could eat that didn’t make me aspirate or cough or, worst-case scenario, sneeze stuff out everywhere. I had to work out the right thickness. I had to get the food groups in and get it nutrient-dense so I was making the biggest impact with the smallest amount of food or liquid. And I had to do all that by trial and error.

I used to sit there with a cup – bearing in mind, I couldn’t swallow water at that point – and teach myself how to get it down. Most adults can get three fingers in their mouth, so I had to learn to jack open my mouth – that was pleasant – and get utensils in there again. There were a lot of tears over that.

The thing that used to absolutely floor me was the cancer booklets that said, “go and try baked beans on a muffin”. No, I can’t eat baked beans because of the skin and I can’t eat the muffin because of the bread. So it was a journey, I tell you.

You must have had to be incredibly patient with the process and with yourself. Were there moments when you just wanted to give up?

No. I’m a very impatient person by nature but the funny thing is I learned patience. I practised yoga for many, many years, and breathing and meditation and mindfulness really came to the fore with this process for me. I learned to be kinder to myself. I learned to really love myself and respect who I was as a person. So in many ways it was a bit of a silver lining.

What are you currently able to eat and where are you hoping to go from here?

One of my life goals now is to be able to go to a business meeting and eat, drink and converse – and breathe – all at the same time. Those little things that we take for granted. But that’s a long-term goal for me.

I can pretty much tackle everything. The only thing I can’t really eat is beef. And look, I think it’s actually been really good for me. I feel better than I’ve probably felt in 40 years. I’m also quite fit now because I don’t drink anymore. I exercise and stretch every day. I have a predominantly vegan diet and I grow a lot of stuff in my own garden.

I do struggle with going out socially – that’s the next thing for me – but I’ve got a lot of confidence, so if anyone says anything, I just tell them what’s happened to me and I’m not embarrassed by it. And look, I’ve got a lot better. I’m eating chilli, I’m eating curry. But last night I just cooked a simple egg and couldn’t eat it. Go figure. So you go backwards, you go forwards, backwards and forwards. And what works this week may not work next week.

It must be frustrating, but you’ve come a long way. At what point did you decide to write your recipe book, Easy Follow Easy Swallow, and start coaching other people? That’s a lot of work on top of taking care of yourself…

Do you think I’m an overachiever?

Yes! What pushed you to take it to that next level?

Well, I’ve always been a career person. I made a conscious decision not to have children and not get married and do all that, because my career was my life. I wanted to travel. I also wanted to be a Formula One driver but, you know, you have to pick and choose.

I started thinking about documenting my journey while I was in intensive care. You have a lot of time to lie there and contemplate your navel and I remember thinking, man oh man, this is not going to be the life for me. I’m on a worldwide mission here to be the poster girl for no feeding tubes and I knew that I had the skills and the drive and the motivation to do it.

I come from a family of teachers and started off in teaching, and then realised I don’t like children very much, maybe I’m not going to do that as a career. But I’ve come full circle now and come back to really wanting to help people. I get so much joy out of coaching other people and giving them motivation and a sense of hope.

What advice do you have for people who are new to the tube- feeding space?

It can get better. You have to be super kind to yourself and don’t let anyone else manage that process for you. I think it’s really important that you stay connected to food and you manage what actually goes into your body to heal yourself.