Rosie's laryngectomy story

Rosie Charlie lost her voice box in 2014 and in this personal video she shares her experience from diagnosis to treatment and beyond.

By sharing her story, Rosie hopes to help others who are faced with the terrifying news of having their voice box removed, while being proud to be part of the first laryngectomy resource developed specifically for Aboriginal patients.

The video production was funded through the Charlies Foundation for Research “Bright Ideas Grant” awarded to Melanie Sonsee (Senior Speech Pathologist, SCGH). The video was produced with the assistance of SCGH staff including - Aboriginal Liaison Officers and staff on G64 and the ENT Outpatient Department and it is available throughout Australia.

 

Narrator:
Rosie is a proud Yarra woman originally from Broome but she got throat cancer which not only took away her voice it threatened to kill her. So in 2014 she had an operation to remove her voice box.

Rosie:
Yeah, well I had a bit of cough, so um I went to the hospital and they said that I had a sore throat and it was really red raw. So they sent me to Perth to have some tests.

Narrator:
Rosie flew to Perth as she was having problems breathing. She had to stay in hospital while she had some tests done.

Rosie:
I had my tests done and they took some biopsy and a couple of days later the doctor said it was cancer. So they said to me that they need to take my voice box out and if I didn’t have it taken out as advised I would die.

Narrator:
Rosie had her surgery a few days later.

Rosie:
What was really scared, really frightened, I didn’t know what to expect.

Narrator:
It was a hard decision but the hospital staff were happy to help and there are aboriginal liaison officers who are here to help too. So if something like this happens to you, there is support.

Rosie:
And I’ve also had speech therapists they was there and to guide me through what was gonna happen and what sort of equipment and what to use, how to talk, and how to breathe.

Narrator:
When the doctors remove your voice box they make a hole in your neck. It’s called a stoma. After the surgery you can now only breathe air in and out of this hole. This hole leads to your lungs so you need to make sure dust, flies or water doesn’t go into it. You also need to make sure the hole doesn’t close up as you won’ be able to breathe air if it does.

Rosie:
I don’t breathe through my nose anymore, I breathe through this hole and that’s my button. That button keeps the hole open and stops it from closing. I have to have a cover, like my scarf to stop dust. I’ve also lost my smell and my taste and from the radiation um, I can’t go swimming anymore. It’s very scary.

Narrator:
All this meant that Rosie didn’t have a voice anymore but she would get it back in a different way.

Rosie:
I couldn’t talk, so I had help with the speech therapist and they gave me this equipment to put there, but I don’t need that, I’ve got a valve inside and um them taught me to talk until I am today.

Narrator:
When the doctors do a laryngectomy and create the stoma they also separate your breathing tube from your food tube so food can’t go down the wrong way. At first you will be fed through a tube in your nose and the doctors will tell you when it is safe to eat and drink normally. The dietitian can help to make sure you get the nutrition you need and the speech pathologist will tell you what food you can swallow. You can then eat through your mouth but it might be a bit tighter in your throat after the surgery. You might need to start by eating softer food or have a drink when you eat to help wash the food down.

Rosie:
After my surgery I was really scared. I couldn’t eat, I was um tube fed, couldn’t breathe, I was on a machine, couldn’t shower. The first time I had a good feed I have a rib eye I couldn’t eat it. So I had to mash it up like baby food and that’s the only taste that I can get out of having a decent rib eye.

Narrator: 
While you are in hospital the doctors and nurses will look after you and check that everything is healing well after the surgery. The nurses will help you look after the stoma and will provide you with equipment that you will need for the rest of your life. You will need to pay for this equipment so make sure you have the money. You may also see other staff who check that you are safe to go home. It is important for you to do your exercises to help you recover and stay healthy. It's also important that your family also knows how to look after the stoma and know what to do if you are having problems. Rosie left hospital once she had healed and was able to look after herself.

Rosie:
Yeah when I went back home to Broome, when I went to the shops and I talked and people would stare at me and I’d say what are you looking at. I told my family too if anything happened to me, if um that I showed them what to do like if I fell or something to make sure my stoma is clear and there’s no dust or rocks or whatever. Yeah when I went back home I looked at myself and I said nah, there’s got to be a new me that the old me has gone. So having this here, it really has changed my life.

Narrator:
A few months after the surgery Rosie needed to have radiotherapy just to make sure all the cancer had been removed.

Rosie:
After my operation I had to go to radiation for eight weeks every day Monday to Friday and they gave me uh, what they call it, mask. They had to make me a mask and that mask was so scary that I was claustrophobic in it. So to relax and get myself right I had to think of something happy.

Narrator:
After the radiotherapy Rosie returned home. She now lives in Wyndham and comes back to Perth once a year to see the ENT doctors. They need to check that the cancer doesn’t come back.

Rosie:
Once a year I have to get my valve changed and I come to Perth and see my speech therapist and my speech therapist changes my valve but for the whole other year for the rest of the year I have to look after it myself. If it don’t look after it I’ll be in a lot of trouble.

Narrator:
Every day Rosie needs to look after the hole in her neck and the valve. She needs to breathe in steam by using a machine called a nebulizer. She then needs to clean any dry bits of phlegm out of the stoma. She needs to have good light so she can see what she is doing. Rosie also needs to clean her speaking valve and check it is working okay.

Rosie:
Still do the same thing what I used to do. Play guitar, play keyboard, do my gardening, party, go shopping, go travelling, visit my families, hunting, camping. I do everything except swimming and singing.

Last Updated: 30/09/2021