WHEN drag queen Eddie Adams was diagnosed with a brain tumour, he never expected the treatment would prove even worse than the disease.
But Eddie, now 33, who strode the stage in high heels as Eddie OK Adams and appeared in a pilot episode of RuPaul’s Drag Race, suffered such severe sickness and fatigue from chemotherapy and radiotherapy, he eventually chose to stop the treatment.
Now he’s vowed to spend his remaining time calling for more research and better therapies for other patients like himself.
Eddie lives in Bedford with mum Julie, 67, a retired caterer, and his dog, Binky.
“Having witnessed what he went through, I think Eddie made the right decision, and I back him all the way," says Julie.
“He’d rather live life and take his chances, making the most of the valuable time he has left.”
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Julie says: “Eddie has told me he isn’t afraid of dying, but I am terrified to think about life without him.
“It seems so unfair that brain tumours kill more young people than any other cancer.
“How can it be that brain cancer is relatively common and yet there are so few treatments?
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Mum and son are currently working with charity Brain Tumour Research to highlight its work raising funds for research.
Brain tumours kill more children and young people under 40 than any other cancer.
Julie says: “Eddie is my only child. He was the sweetest baby and everyone adored him.
“He has always been the centre of my world. I brought him up alone, having been through a separation when he was just a few weeks old, then a divorce.
“Eddie had a difficult time after confiding in a friend that he thought he was gay.
“When he came out to me, aged about 12 or 13, I felt sad that he would have to endure bullying, which sadly, seems to come with the territory.
“He suffered horribly at school, and academically he switched off, but he was always good at drama.
“As a teenager, he went through a goth stage and would wear make-up, then started to dress in an androgynous way.
“From there he began to look more feminine – leading him into the drag scene.
“Eddie had always been handsome, extrovert and over the top, so the drag scene turned out to be his natural home!
“I thought he looked fantastic in make-up and gowns, and soon he was in great demand to play at venues across the country.
“I was very proud when, in 2015, he took part in the pilot of what was to become the television reality show RuPaul’s Drag Race.”
The event took place at the Café Royal, London, and, along with RuPaul, the other judges were Jonathan Ross and Katie Price.
The contest was streamed live on a TV platform called Periscope, but never more widely broadcast; however, it proved to Ru Paul there was a thriving drag scene in this country, which has since been showcased in the UK version of the show.
MASSIVE SEIZURE
Eddie was living in Brighton and more in demand for his drag act than ever, when he was struck down with a massive seizure.
Julie recalls: “In August 2017, I went away for the weekend, blissfully unaware of what was happening to my only child.
“He’d been sitting outside his flat when he had the seizure, and I’ll always be grateful to his flatmate, Ruth, who handled it brilliantly when he launched himself off his chair across some decking.
“A friend called me on the Saturday morning with the news. I was stunned, with no idea yet of the full implications of what my son was going through.
“The journey to Brighton took forever. It was Pride weekend, an event Eddie had been looking forward to.
“When I finally got to the hospital, I found him scratched and bruised from the fall.
“I was horrified to learn that a CT scan had revealed he had a brain tumour – although, at that point, it wasn’t thought life-threatening.
“It was typical of Eddie that, when I saw him, he seemed to be more concerned about missing out on the Pride party than having a brain tumour!”
A date for brain surgery, November 24, 2017, arrived all too soon. Eddie was calm and brave, whereas his mum says she felt sick with fear and anxiety.
“Eddie’s father and I whiled away the hours while he had the procedure, an awake craniotomy.
“He had to be conscious for two and a half hours of the operation, so the surgeon could determine how his cognition and motor skills were being affected, as they cut away brain tissue.
“Apparently, during the surgery, Eddie had the theatre staff in hysterics – typical of him!
“We were so relieved to be told the operation had been a success.”
MAJOR SETBACK
Back home in Bedford, Eddie initially recovered well.
But it was an awful blow to find that analysis of the removed tissue revealed the tumour was in fact a rare incurable high-grade anaplastic astrocytoma brain tumour, and his prognosis was three to five years.
Worse was to come.
Julie recalls: “Two weeks after the operation, Eddie became violently sick with an infection.
“He was back in surgery, this time to have infected bone removed from his skull, and his brain washed out with peroxide.
“The procedure left him with a large crater in his head and permanent hair loss.
“But somehow he still retained his sense of humour and finally, just before Christmas, was allowed to come home again.
“Eddie never complained during the following weeks of radiotherapy. Next came the chemotherapy, but, despite his strength of character, that was just too much. It made him so unwell and fatigued.
“By then, I felt as if the treatment was destroying my beautiful boy, bit by bit.”
After some consideration Eddie, having been told the drugs would extend his life by just ten per cent if he was lucky, decided to stop the treatment, feeling that the addition to his bleak prognosis wasn’t enough to justify continuing with such misery.
Eddie has worked as a photographer in the past. He took some self-portraits showing the dent in his skull, two years after he had surgery.
“I think the pictures really capture who he is; a strikingly beautiful, vulnerable, yet brave young man,” says Julie.
“I’m so very proud of him and the decisions he has made.”
FACT FILE
Brain tumours are indiscriminate. They can affect anyone at any age, there is no cure and for many, sadly, there is little or no hope.
88 per cent of those diagnosed with a brain tumour die within five years.
Brain tumours kill more children and adults under the age of 40 than any other cancer.
Yet historically, just 1% of the national spend on cancer research has been allocated to this devastating disease.
www.braintumourresearch.org
Today, almost five years on from his diagnosis, mum and son now feel Eddie is living on borrowed time.
“Doctors cut the tumours out with surgery, burn the patients with radiation and then poison them with chemotherapy.
“Underneath all of this there is a human being like my son. These treatments are barbaric and brutal and that is so, so unfair," says Julie.
“Eddie is a cheerful, positive, courageous person, but life now is hard for him.
“He suffers permanent headaches and migraines because of the pressure on his brain.
“Sadly, the journey he’s been on since diagnosis has been a far cry from the glamour and excitement of what life should have been, had he continued as a successful drag queen.”
HOPE FOR OTHERS
Eddie and Julie connected with Brain Tumour Research to share his story and raise awareness.
In 2021, Eddie starred in BTR’s advertisement campaign Stop the Devastation which exposed the history of underfunding for brain tumour research – only one per cent of the national spend on research is allocated to this terrible disease.
Meanwhile he has never had surgery to repair the dent in his skull with a titanium plate, and hasn’t yet made up his mind whether to have the operation, since it is such major surgery.
Eddie says: “The treatment for my brain tumour made me so ill, and I can’t understand why in this age of modern medicine the treatment options available for people like me are still so barbaric, even more barbaric than the disease itself.
“I want to have the best quality of life for whatever time I have left.
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“If I can use my illness to raise awareness of how things are for patients like me, that is a positive thing.”
Visit www.braintumourresearch.org for more information.
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