“The treatment did work,” his wife, Rebecca Fleming, told The Age and the Sydney Morning Herald. “I just want to set that clear. He didn’t die from multiple myeloma.”
“Over the seven years that Tom’s had cancer he’s fought hard and he’s tried all the different therapies as they’ve come out. The Car T-cell therapy that he took part in last year was the last hope for him. He achieved remission and he was so grateful.”
“The next part of his journey was to dedicate himself to raising awareness of CAR T-Cell therapy. For us, we were self-funded to go to Seattle for this treatment. That’s not an option for a lot of people. [He believed] it should be for everyone.”
CAR T-Cell therapy, which is in its early stages, involves re-engineering a patient’s immune T-cells in the hope they will hunt down and destroy cancer cells. Long had described the medical trial as like a scene from The Exorcist.
Ms Fleming said she wanted to thank everyone for their outpouring of love and support.
She says Long was “really at peace and in his home,” when he died.
“Gratitude is our way of getting through this,” she said. “Gratitude for all these amazing experiences with people who have cared for Tom and the lessons we’ve learnt along the way. Tom’s mindset was always really positive because he felt really supported … by the Australian people and our community.”
He grew up in Benalla, in north-east Victoria, before going on to study at the National Institute of Dramatic Art. He became a household name in the 1990s thanks to playing court official and keen surfer Angus in ABC TV’s SeaChange .
(The series has since been brought back by Nine, the owner of this masthead.)
Long’s SeaChange co-star David Wenham described him as a “sublime actor” and a “beautiful human being”.
Fellow performer Anthony Hayes – best-known for his role in Australian TV show The Slap – agreed, describing Long as a “national treasure”.
“All heart,” he wrote on social media. “All kindness. All love and humour. I’ll miss him dearly. What an honour it was to know you and share the world with you.”
Nine’s co-heads of drama, Andy Ryan and and Jo Rooney, also paid tribute.
“As an actor Tom will forever be remembered for his role as the lovable Angus in SeaChange, as well as lead roles in The Postcard Bandit and Young Lions amongst others,” the pair said in a joint statement. “Tom always brought a warmth and humour to the screen which audiences loved. He will be greatly missed by all in the film and television industry and our condolences go to his family at this very sad time.”
Last year, Long said living through cancer had made him a better person.
“I am a lot more grateful for living,” he said. “I have an enormous curiosity. I think that’s what keeps us going. Through the darkness, if you can keep your curiosity, that helps. And a connectedness to family, friends, to community. It takes you to those edges. There is something that connects us all.”
Long’s family is expected to release details of a public memorial in the coming days.
Broede Carmody is a culture reporter at The Age and The Sydney Morning Herald