Canberra Liberals scions Clare Carnell, John Lane are getting married

Despite shared backgrounds, they were veritable strangers and a victim impact statement needed to be delivered. A much-loved brother had been lost in a senseless crash.

"John did not realise he had to read his out loud. So I sat next to this bloke who was white as a sheet, shaking, terrified, nervous."

These are the words of Clare Carnell, the daughter of former ACT chief minister Kate Carnell. She will next weekend take the hand of John Lane, the son of former Canberra Liberals leader Bill Stefaniak.

They are just days away getting married. And, after the big day, she is several more days away from her next round of chemotherapy.

The memory of the moment they met is still overwhelming.

"I don't normally take strangers' hands," Ms Carnell told The Canberra Times.

"It's not a thing I normally do to random blokes, but I took his hand and I said 'You know what, you're going to be fine. It's not a test. You don't have to talk loudly. The judge is just there. You know, just take your time'.

"We all had tears in our eyes. Not a word of blame. Not another word about her. It was a very short, simple statement about Joseph, about their relationship.

"It was very ... wow."

Mr Lane remembers, "It was the strangest day."

"Quite different from how you meet anyone really.

"It was just meant to be."

The rest, they say, is history. And life is cruel, as always.

The barrister has the rare auto-immune disease ANCA associated vasculitis. The disorder causes inflammation and damage of small blood cells and it will be a tough fight.

There are good days and bad days. The worst of it has been hidden from view with all the COVID days at home in lockdown, Ms Carnell said.

"The diagnosis was a shock insofar as it was you have to start chemo now because you can't not treat it. Otherwise yes, it would be fatal," Ms Carnell said.

"My current prognosis, so I've been on this chemo for nearly 12 months, we will start a different treatment regime after the wedding and see how that goes."

A serious prognosis seven weeks ago, "it is still sort of tracking along", has changed the couple's long engagement to "why don't we just do it?"

"We started getting slightly scary sort of prospects thrown at us in terms of you know, prognosis and treatments and all that," Ms Carnell explained. "John just said, 'Let's get married. I want to go through this as husband and wife' and I said, 'OK, why not?"'

It will be a second time down the aisle for both, and Mr Lane, a public servant, has two children, Sofia and Archie, from his first marriage.

"I think for us it is also a statement towards our family, and obviously we're getting married in a church to God as well, is that we are 100 per cent committed," Mr Lane said.

"And that old line 'in sickness and in health', well, maybe it is in sickness at the moment, but we're trying to make it healthy so you don't just look ahead, but it's also the time you are living now."

The couple have been reassessing their lives. They are pursuing life with gusto.

"Sometimes people just get caught up in different areas of their lives, it will always be put off or it will never be perfect," Mr Lane said.

"But perhaps it will never be perfect, but you can try and make it perfect and that you take up that opportunity."

The two are in sync as they detail the battle and the celebration ahead. She says it is not impossible to be positive when really sick.

"You can have chemo, like everyday chemo, and still plan and have an awesome wedding," Ms Carnell said.

"You know, we could plan a party, have a wedding, do something, because mostly you just don't think that's all possible, if and until we get better."

"But totally, if it's not the wedding, then something else and then after the wedding it'll be the next thing, maybe Christmas, maybe a New Year thing, but doing stuff, differently, but still living, I guess."

The timing is right for a modest wedding party as the ACT opens from the pandemic. She says it has become an important part of her mental health and wellbeing.

"Fingers crossed, we will turn a corner and get remission, but there's still a chance for that we won't," he said.

"So either way we just thought let's not keep putting stuff off. And especially not important stuff. And this is important.

"COVID has taught us that, right? You can do stuff differently and it's still awesome."

The couple are sharing their story in a bid to open conversations around death and physical illnesses.

In a first for the priest involved, he is organising the wedding and her funeral at the same time.

And coming from the legal profession, Ms Carnell can't help but urge everyone to have an up-to-date will.

"It's actually a really loving thing to do. People hate doing it. Because no one wants to think about dying," she said.

"It was confronting having to look at a wedding and a funeral within a matter of months. It's a possibility. But it's just a possibility. You know, it's good to have possibilities dealt with."

The couple insist they are not giving up hope, they are just being realistic and are happy to talk about it.

Mr Lane said, "When my brother died a few years ago, I had people who just avoided me.

"When I went back to work ... I could see them not actually go up the stairs or not go past my desk because they didn't know what to say. And it is difficult."

Ms Carnell has plans to expand her business online and, after her experiences in hospital, give back to patients struggling in the system.

"Looking forward, living with this and working with this especially most people say that you can't work until you are better, I say no, no, no," she said.

"It's just different. It's different and it's better in a sense of my personal relationships. And it's such a cliché, but I wish I'd had it before. I wish everyone had said, 'You know, you can't, you can't get today again, etc, etc'.

"I wish I'd had this insight before this."

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