Liz Clarke-Saul on her wedding day in 2019

SHE knew she was dying, but Liz Clarke-Saul was determined that nobody should ever be told again that the world wasn’t really looking for a treatment – let alone a cure – for her rare cancer.

Being told you have cancer must be the most numbing words on their own, but imagine hearing the added crushing line that nobody really has a clue as to how to tackle it.

She was 31 when she died in July 2020. Kind, bright, funny – and fit, Liz was a paracyclist who had represented Team GB on two wheels.

I want to tell you about her partly because she is my partner’s cousin and I’m proud of what she did next – but also because her response to this awful diagnosis, it seems and we hope, have not gone to waste.

Yesterday, Thursday, it was announced that a fund set up her name has been the catalyst in finally kick-starting studies into the adamantinoma, the disease that took her from us, a cancer that you have almost as much chance of winning the lottery than being diagnosed with.

The Bone Cancer Research Trust (BCRT) said that after a positive response in two pilot research projects paid for by her fundraising, a funding call worth £100,000 was now going out for those who could take on more substantial studies.

A long journey has to begin somewhere, and Liz has helped the scientists take that first leap.

In an article for this paper just three months before she died, she put it best herself: “I want to change the landscape of adamantinoma for patients in the future so that another me, in however many years time, wouldn’t be sat down by their oncologist and be told that there was nothing they could do.

“It was clear what needed to happen: with no research taking place specifically into adamantinoma anywhere there is no possibility of new treatments coming through for patients.

Liz Clarke-Saul on her bike

“Rare diseases receive very little funding and if no one else was going to enable the research to happen then I needed to do it myself.”

At a memorial event on Saturday afternoon – delayed due to Covid restrictions that had limited attendance at her funeral – friends and family were given details of how money raised from running marathons and shaking buckets was having a positive effect.

“One important aspect of this new programme of research is to ensure the knowledge accumulated is shared with the wider bone sarcoma community, stimulating further research in the field,” the BCRT said.

“The recipients of the award will be expected to present this work at national and international meetings and champion the need for further research on adamantinoma.”

More technical details can be found on the charity’s website.

This memorial event at the London Wetland Centre over in Barnes heard from her father Jeremy and husband Jack that she did not like being cast as a “brave” cancer patient, but while there were tears shed in memory of a kind, funny and bright young woman, it was impossible not to think of her as courageous too.

Liz had already overcome adamantinoma as a child and her leg was amputated to halt the cancer in its tracks.

Having been inspired to take up cycling by the London Olympics and Paralympics in 2012, and encouraged by her sister Caroline, she found she was good at it and went on to represent her country in races abroad, winning a bronze medal at the Para-Cycling World Cup in South Africa in 2015.

As with so many athletes, she did all this while also working a day job and worked on communications and fundraising for UCL at its King’s Cross office.

The worst news, however, came in 2018 when, after feeling unusually tired between training, check-ups found that her lungs were full of fluid and the adamantinoma had returned and was attacking her spine.

Husband Jack told us that she had been struck by people’s kindness when strangers donated to the research fund after hearing of her story, and that they had been strengthened by the solidarity of friends who helped with the fundraising. But in private moments she was angry that she was being robbed of her future and determined that nobody should be left with no hope of treatment.

As she said: “I want to change the landscape of adamantinoma for patients in the future…”

And she has changed it. Scientists are talking about it, new ideas for treatments are being discussed.

A fitting legacy to a woman who saw beyond her death – and defiantly demanded better for those who come after her.