September 1 2014 Latest news:
Monday, November 12, 2012
A mother-of-five with an extremely rare form of cancer has set up a website to raise awareness of and raise funds for a campaign calling for more research to find a potential cure.
Sharon Perks, 41, was earlier this year diagnosed with neuroendocrine tumours, or NETs, the same cancer that killed Apple’s Steve Jobs.
Sharon and partner Mark Heazle, who live together in Rockland St Mary, near Norwich, have been told that the cancer is incurable and it has spread to various parts of her body.
But they have been given a tiny chink of hope through a campaign that is running to raise funds to allow a clinical trial for a potential cure to go ahead.
She said that while it may well be too late for her to benefit from the research, she has set up a website to raise its profile and encourage people to organise activities and donate to it.
She has also added a link on the website to her personal story, which outlines in great detail how the cancer has affected her and her family.
She said: “A few weeks ago we came across a chink of hope that we are clinging on to. This is work towards a potential cure or at least treatment that means you can carry on living your life by managing it.
“The campaign is trying to raise funds to accelerate the ability to move the research on - because it is such a rare cancer, gaining funding is so difficult.
“I have been inspired by the small group of people behind the campaign, who like me and my family, are desperate for a cure of sorts and have tried to take it into their own hands to raise the funding.
“I can’t simply sit back and let others do all the work and I want to do all that I can to help support this campaign.
“But I have absolutely no idea if this treatment, even if developed, is something that could be provided in time to benefit me.”
Ms Perks, who used to work in local government where she met her partner, who now works for South Norfolk Council, said she started feeling unwell as she approached her 40th birthday, and she was finally diagnosed with a rare hormonal condition called Cushings Syndrome.
She said: “At this point, I finally collapsed one night at home and could no longer go into work and soon after I was admitted to hospital in Addenbrooke’s Hospital in Cambridge to carry out investigations into the cause.
“This is when they found some secondary tumours in my liver and lymph nodes. We were told they were ‘neuro endocrine tumours’ (referred to as NETs) and that treatment would be considered.
“However, I was completely shocked and certainly not prepared at all, to hear that there was nothing they could do, as this very rare type of cancer doesn’t respond to the usual types of treatment.
“I was told it was just a matter of time before the cancer progresses but in most cases it is a slow growing form, so I have scans every three months.
“Today, I am relatively well. I suffer greatly with fatigue and as such try not to plan too much from one day to the next as there are the odd bad days when I can barely get out of bed.
“As well as friends and family support, I have been getting great support from The Big C in Norwich and have just recently joined The Rosemary Group, which was set up by cancer nurse specialists at the Norfolk and Norwich University Hospital. We also gain lots from the national NETS support network.”
She met her partner, Mark Heazle, 31, six years ago while they were both working for local government in Leicestershire. They relocated to Norwich nearly three years ago. They have five children (three teenage girls - Ellie, Keira, Georgia, age 16, 15 and 13 from Ms Perks’ previous marriage), and two together, Albie, four, and Orla, three.
For more information visit www.letsbeatnets.com