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Lizzy Edwards - a Carer's Story

My partner in crime (Drew) was diagnosed with cancer of the larynx in February 2019. I had no idea then how much it would affect our lives and how lonely the journey would be for me as his carer.

Although he is now cancer free, there are lingering side effects of HNC such as dental and swallowing problems. There have been times I have asked the universe, what did we do wrong to end up here?

We were blessed with an amazing medical team. Drew’s initial treatment involved a long period of radiation and chemo, which sent him into remission.

However, his cancer returned just under two years later. Things moved swiftly and we travelled to Sydney (from Canberra) where he had a partial then full laryngectomy.

I remember that on top of the fear I had about Drew, the stress for me, as his carer was enormous. I had to be the person to hold it together and ensure we came out the other side. I was his personal driver,
record keeper, appointment booker, nutritionist (while having chemo and radiation, Drew had a gastric feeding tube so couldn’t eat real food), and ensure the weekly nurse, dental, speech and dietitian
visits kept happening.

Post-surgery, Drew couldn’t swallow so I moved on to creative chef, working out which foods could puree with the most calories and nutrients to ensure he put on the weight he had lost.

Drew’s mental health was probably most concerning at this stage. I rang over 20 psychologists but they were all booked out (it was the middle of Covid). Then I called HANCA and stumbled across the
wonderful Nadia who suggested a support group called The Larykins might be able to help. And help they did.

If I could change one thing about my time as Drew’s carer, it would definitely be support. It’s a lonely position and no-one in real life truly
understands what is going on or how bad things are. A lot of focus in on the patient (and rightly so), with little support given to the carer… but my goodness, at times, it’s hard!

Imagine suddenly having a partner with no voice and you have total responsibility for their entire life, including their health, wellbeing and treatment. Imagine having to make the tough calls and get them to the hospital or doctor if something wasn’t right, knowing it was the last place they wanted to go. Imagine spending hours driving and, even with your partner in the car, having no one to chat to because they couldn’t speak. HNC is hard on everyone, and more people should be aware.

Drew and I are happy to support HANCA and we can see how its profile has increased over the last 18 months. People seem to be more aware and know that HNCs are truly unique and difficult to deal with. The HANCA team are incredible with their dedication and passion for raising awareness, funding and drive to change legislation so that HNC patients have a fair and equitable level of treatment and support.

Thank you so much for sharing your story Lizzy.

If you are a carer, family member or friend of someone living with Head and Neck Cancer, you will find plenty of useful information here.

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