When South East Regional Centre for Urban Landcare (SERCUL) chief executive Julie Robert was diagnosed with a rare cancer in February she was given three to six weeks to live and told she would not meet her first grandchild.
Almost nine months later, the Lynwood resident was able to witness the birth of her grandson Finn.
While the tumours have shrunk she said her best hope now lay in a new treatment used in Australia but it was not approved for her use because of the rarity of the cancer.
Ms Robert has cholangiocarcinoma, which is a cancer of the common bile duct.
The well-known environmentalist was speaking out because she had found research and support for people with rare cancers was lacking.
The treatment she sought was only available through government subsidies for people with melanoma, meaning Ms Robert had to fund the $150,000 treatment herself.
To raise money for her treatment she has established a go fund me page and SERCUL will hold a fundraiser this Sunday.
“I had been unwell with all sorts of different symptoms for about three years prior and it was all put down to menopause and every other excuse under the sun,” she said.
“No one ever connected the dots to work out that I had a very nasty cancer going on so by the time it was diagnosed I was stage four-five, which is the final stage.”
Ms Robert had also developed secondary cancers in her lungs, lymph glands, bone, spleen and liver.
“The day I told my children the cancer was inoperable was the day my daughter told me she was pregnant so it was bittersweet,” she said.
“The day he was born I was there and it was just the best moment.
“My liver function has improved since then and I’ve just been taking the opportunity to soak up this little grandchild as much as I can.”
Ms Robert, 55, was undergoing chemotherapy as well as complementary medicine but her resources were now exhausted.
This was exacerbated by the fact that her cancer was uncommon, meaning there was limited research and support.
“The problem here in this country is there’s no support for rare disease and I think that stinks,” she said.
“Rare cancer needs a profile and it’s very difficult when you have one of these rare cancers because you don’t have a lot of people to talk to about it.
“There’s also very little study on the kind of cancer that I have so I just have to give it the best I can and try and go for some newer technologies.”
Ms Robert said despite fighting cancer she hadn’t given up her fight to improve the environment and local waterways because there was still too much to do.
“I haven’t been at work but you never really stop and we have a great team and acting CEO,” she said.
“I’m very proud of the work they’ve done but there’s still a lot to do because this is a very bad time for the environment and for environmental funding.”
After leaving her job as a nurse she founded the Bannister Creek catchment group in 1995. SERCUL was founded in 2003.
The fundraising day will be held at 69 Horley Road, Beckenham on Sunday from 1pm to 5pm.
For more information call Amy Krupa at 9458 5664 or email amykrupa@sercul.org.au.
