Before she is deaf, Kylie wants to complete her bucket list of sounds

Someday soon Kylie Webb will visit a specialist and her world will fall silent.

She doesn't know how much longer she will hear. It might be months or years.

These are the sounds she wants to remember.

A church organ

Kylie stands in Bendigo's Sacred Heart Cathedral. It's a towering gothic structure that looms over the town.

The church organ's chorus of pipes fill the massive space with song.

The 38-year-old has heard this sound before.

In her early teen years there would be church services here for students to mark the start and end of the school year.

But they never really listened. They fidgeted, whispered, daydreamed.

She's listening now.

"It's actually beautiful," she says.

"I'd like to think that even if I wasn't going to lose my hearing, that I would still love the sound of that organ. It is pretty spectacular."

Those early teen years were difficult ones for Kylie.

"She had to grow up very, very quickly," her mum Bernie tells ABC RN's Earshot.

At 14 Kylie was having intense pain and cramps.

When doctors eventually found cancer in her ovaries they didn't think she'd survive.

"The doctor rang me and told me that they would do a full hysterectomy and 'you'll take her home and you'll just enjoy her'. They didn't give her any hope," Bernie says.

"It was absolutely devastating, absolutely devastating."

Another doctor disagreed, and the operation was cancelled. Kylie fought.

"She had nine months of gruelling chemo, and came out the other side," Bernie says.

Waves on a beach

Kylie sits on the sand and listens. Kids are playing nearby.

The sound she really wants to hear is the roar of waves, thundering as they break during a storm. But today it's sunny, the waves gently lap.

She hears it faintly, as if she's underwater.

The beach is a special place.

"[When I had cancer] one of the only places that I was ever on my own was when I was in the shower," she says.

She now associates the water with "my time", "peace time".

Years after beating ovarian cancer Kylie started getting a ringing in her ears.

She put up with it for years, but soon she was having trouble sleeping, and concentrating throughout the day.

Doctors discovered tiny non-cancerous tumours on her spine and auditory nerves, the result of a genetic condition called neurofibromatosis type 2 (NF2).

The tumours on the spine were removed — they posed an immediate threat. Those on her auditory nerve stayed.

Over months and years the ringing in Kylie's ears increased and she heard less and less.

The tumours on her left side doubled in size so the decision was made — she'd undergo surgery that would sever that auditory nerve.

The hearing in her left ear was now gone.

The same thing will happen to her right ear. She was due to have the operation early this year.

But the tumours' growth has been slower.

It's a reprieve, but a temporary one.

In six months, maybe a couple of years, Kylie will need to visit a specialist. She'll be told the time has come.

The change she knows is coming will arrive.

Silence.

She sits in the sand and takes it all in. The sights and the sounds.

"I'm pretty sure that even after I can no longer hear the sounds of the waves that I'll still come to the beach, because I still have those visual cues," Kylie says.

It's why she wants to remember.

"What it sounds like to hear the water splashing up on the sand. What it is to hear seagulls and kids and just the sound of the water."

Bagpipes

These memories are more than just the actual sounds.

"It is the memory of it and the whole experience rather than the sound itself. I think about how I got there in the first place, what was happening around me who I was with, and what that meant," Kylie says.

"When my world is silent I can look back and think 'that's how that made me feel'."

Kylie's back in her hometown of Bendigo, in the city's Rosalind Park.

The sound of birds fills the air.

Her hearing loss means birds can be hard to hear — high frequency noises are a challenge.

But it's not birds she's come to listen to.

A member of the local pipe band is giving Kylie a private concert.

He plays Amazing Grace on his bagpipes and Kylie is lost in the experience.

"I got so immersed in the sound that I forgot that anybody was around," she says.

"Whereas now I'm appreciative of the sound and I do think about what it is that I'm listening to."

She also appreciates the challenges being deaf will bring to everyday situations — from buying groceries to catching up with friends.

It's why every Monday she meets with a group of work friends for lessons in sign language.

"I want to be able to communicate. I want to be able to have a conversation with somebody in what my normality will be. And if that is signing, then so be it."

Her friend Sharon is taking part.

"You want to be able to interact with your friend. This is the path to help us communicate in the long term. So it's really important to me," she says.

Kylie works in the health sector, and has been raising money for cancer research — especially the Children's Tumour Foundation.

"You can either stay in bed and wallow about it or you get up and keep living and make a positive out of the negative."

'Mummy'

Among all the sounds she's been crossing off her list — hearing her voice echo from the top of a mountain, the Last Post, opera, a Kasey Chambers concert — one is the most personal.

"There was really no question on what the top sound was going to be. That was having my child call me mummy. I couldn't imagine that there would be any greater sound than that."

But the childhood cancer that had forced Kylie to grow up "very, very quickly" would also make having a child of her own very difficult.

"I only had one ovary left after the cancer and back then it wasn't a known thing to freeze eggs. It wasn't given a thought."

As her 30s approached she and her partner began IVF treatment, but it was too much for her ovary and she went into early menopause.

Kylie approached her younger sister.

Her sister would provide the eggs which, once fertilised, would be implanted in Kylie.

Her mum Bernie remembers her shock when Kylie fell pregnant.

"I thought, 'Oh my God, it's happened,'" Bernie says.

"Right up to the day that she went into her 12th week she still had all the symptoms of pregnancy. Everything was still there. I said to her, 'It's fine. Just go and listen to that beautiful heartbeat.'

"And then it was gone."

Kylie's years of IVF were over.

"I resigned myself to the fact that being a mum wasn't going to be a possibility," she says.

"I was never going to hear a child of mine call me mummy."

Then came unexpected news and complicated feelings.

Her sister was pregnant.

"It took all my might to smile and … put on that brave face and say all the wonderful things and 'Oh I'm so excited for you,'" Kylie says.

"The minute I hung up, I just sobbed. I remember sobbing and sobbing and thinking, 'Oh my God, how am I going to do this?'"

The moment baby Sophie arrived everything fell into place.

"Everything that I was so worried about, being jealous and not being able to even like the baby … I didn't even think about that as I walked into that hospital room because I was just excited."

'Aunty Kylie'

Kylie now has a new sound at the top of her list.

She's just waiting on 19-month-old Sophie to say it, and for COVID-19 restrictions to allow her to experience it in person.

With everything she's been through, Kylie isn't 100 per cent confident she will get to hear it.

"Only because I know what my hearing has been like, what my luck is like."

If she does — like all the sounds she's heard — she won't take it for granted.

She'll treasure it.

Not just the sound, but the moment, the experience, the memory.

"I was there the first time she said 'nana' to my mum," she says.

"Seeing that priceless look on my mum's face. I can imagine that that's going to be me."