A mum whose doctor told her she needed to have a “few wines and relax” – when she complained about constant pain and severe bleeding over two years – actually had cervical cancer.
Ashlee Williams-Barnes, from Jervis Bay on the NSW South Coast, was just 24 when she began experiencing unexplained symptoms – including UTIs, pelvic pain, heavy bleeding and infections.
Despite meeting multiple doctors almost every week, the “fit and healthy” mum-of-two claims her symptoms were dismissed over two years.
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Her world came crashing down when she was told to get her “affairs in order” because she would be “lucky” to be alive for Christmas 2015 after she was given a devastating cancer diagnosis at 26.
It was one of the “darkest times” of her life, with her distraught family watching helplessly as she fought through the condition that’s most common in people aged 49 or over in Australia.
Long before her shock diagnosis, the mum says she was prescribed antibiotics for nearly six months to treat what her GPs believed was an “infection”.
During her “journey to find a resolution” to her health concerns, one of the many statements she received from her doctors included: “You are too young to have cancer”.
“To top it all off – this one’s my favourite… ‘Maybe you need to have a few wines and relax, it’s all in your head’,” Ashlee tells 7Life.
“Really I have no words. It felt like nobody cared, was I going crazy?
“I felt scared, unheard, and alone – even though I had my family and friends to lean on – I felt my options were running out.”
Her journey started in 2013 when she had her first pap smear, aged 24.
At the time, she had already started a family, with two toddlers – daughter Zahli and son Kyden.
Upon receiving her pap smear results, she learnt she had a low-grade pre-squamous, an area of abnormal cells forming on the cervix’s surface.
But she was advised to return to her GP in 12 months.
“I didn’t know what this meant at the time. No explanation was given and my GP didn’t seem to worry and ushered me out the door without any follow-up,” she recalls.
Throughout 2013, she suffered heavy bleeding between periods, discomfort and infections.
A year later, Ashlee says her symptoms were “progressively worse” as she constantly suffered mentally and physically.
She could never predict when the “random” bleeding occurred – so she would always leave the house wearing a sanitary pad.
“I experienced bleeding that started intermittently and progressed to a point where I had to wear menstrual pads every day of my life to ensure I left the house with a minuscule of confidence,” she recalls.
‘Seriously horrifying’
“I left the house knowing that if I was going to bleed out that day, the pad would give me a couple of seconds to find a place to hide or a toilet before it would flood my clothing.
“My shoes would be filled with blood and the floor around me – it was seriously horrifying.”
She knew something wasn’t right as she considered herself as a “very fit and healthy person”.
Ashlee says she found herself living in black clothes amid fears of bleeding and was constantly taking painkillers.
“This was not normal,” she says.
“Other symptoms that took over my life included lethargy, lack of motivation, depression, pelvic pain and weird sugar cravings.”
She was unable to use tampons due to the excruciating pain and she was no longer intimate with her partner Luke.
“Our sex life became non-existent,” she recalls.
With the help of her mum, Ashlee says it “became clear we had to knock on doors until somebody listened”.
“We found a GP who referred me to a specialist that actually took me seriously,” she says.
“This was one-and-a-half hours away from my home. She was our miracle.
‘Not far from answers’
“On the drive home, several things were going through my mind.
“I thought, ‘This is bad, how can this have taken two years for someone to really listen?’
“But on a positive note, I feel now I am not far from getting answers.”
The next appointment she attended completely “changed my life”.
Ashlee underwent a biopsy procedure where she had a cone-shaped piece of tissue removed from her cervix.
“I returned home after this ‘day’ procedure, however I did not recover from the surgery,” she says.
Three days later, she fell critically ill after nearly losing consciousness and an “enormous amount of blood”.
‘Not great news’
After sitting in the waiting room of her local hospital for eight hours, she was taken to a Sydney hospital where she was placed in intensive care.
“The next day my specialist advised that I would be having further surgery to stop the bleeding and he requested I call my parents to come up immediately as he wanted to explain what was happening to me,” she recalls.
“When you have your partner beside you and the doctor wants your parents there too – you know it’s not going to be great news.
“However, I thought I just need to take it as it comes.”
What was estimated to be a 10-minute procedure to stop the bleeding turned into a four-hour ordeal.
When she woke up from surgery, she was surrounded by her parents, aunty and partner.
“This was the day I heard those exact words, ‘You have cancer’,” she recalls.
“My thoughts immediately went to Luke, my parents, and my family. I could not imagine how they must have felt to hear this.”
She was diagnosed with cervical cancer at 26 – the average age of sufferers in Australia is 49.
“My specialist explained that it was an aggressive and large tumour attached to my cervical wall, and I would need further testing and scans,” Ashlee says.
‘Deemed inoperable’
A few hours after she had her scan, the family was given the devastating news.
“With my family by my side, my specialist sincerely expressed his horror that things were much worse than first expected,” she says.
“I had over a 5.8cm aggressive tumor, the cancer had already reached my lymph nodes and invaded my whole cervix.
“I was deemed inoperable.”
Adding fuel to the fire, the couple was told there was a slim chance of them having another baby.
“We were told I could not save any of my eggs for the chance of Luke and I having a baby together – there was no time,” she recalls.
‘Lucky if see Christmas’
But what pushed the family over the edge was learning the possibility Ashlee might not be around for much longer.
“It wasn’t about babies anymore – it was now about saving my life,” she explains.
“I would be lucky if I got to see Christmas 2015. The news was not good. I watched on as my family tried to hold it together.
“I knew they felt helpless and they were all scared of me losing my fight.
“I had two weeks to go home, get my affairs in order and was recommended to get family photos in, which we did.”
Miraculously, Ashlee says she was given a glimmer of hope when she was offered a medical trial.
“It wasn’t part of my treatment for the cervical cancer but would be chemotherapy at the end of my necessary treatment,” she says.
“The trial was being conducted in the hope that it would reduce secondary cancers.
Glimmer of hope
“I didn’t hesitate. My thought process was, ‘Why not?’ If it doesn’t help me, hopefully the research and data they collect will help someone else in the future.”
She describes the treatment as “invasive” as she was required to receive radiotherapy every day along with chemotherapy once a week over three months.
Her procedures were followed by a further four rounds of brachytherapy, a type of internal radiotherapy, given once per week.
“I was then given a three-week recovery block,” she says.
“Then came another 12-week course of chemotherapy.
“Throughout my treatment it was hard.
“Most days I had to tell myself to just get through the next five minutes.
“I got through months of taking it five minutes at a time.”
As she suffered from weakness, Ashlee says she lost all of her physical strength.
“I couldn’t do basic things like get dressed, take a shower or go to the toilet without the assistance of Luke,” she says.
“It hurt to move and I struggled to lift my head off my pillow.
“I shed quite a few tears mainly when I was vomiting or coming down off the steroids.”
Five minutes at a time
Her partner Luke stayed by her side as he helped her cope through each day.
“He would pick me up and he would remind me that I’d gotten through every bad day so far so I could make it through this one,” she says.
“And that’s what I did.
“I took it five minutes at a time, a day at a time, a week at a time, a treatment at a time.
“I kept my positivity that I could beat the odds and I never gave up hope.
“My specialists and I had done everything possible to provide a good outcome.”
Just one week before Christmas 2015, the mum was expecting a phone call that would make or break her family’s future.
“The call would provide me with my last MRI results,” she explains.
Good and bad news
“I was in Kmart shopping for some last-minute pressies when my radiotherapist called. She said she had ‘good and bad news’.
“She explained the bad news was that, due to the intensity of the treatment, I have a lot of scar tissue and will never fully recover from that.
“However, that was quickly forgotten when she delivered the good news.
“She said the words every cancer patient fights for, ‘You are now cancer free’.”
Now, seven years on, Ashlee says she has been adjusting to her life “now made up of my new normal”.
“My organs are heavily affected and damaged by my treatment… They don’t operate normally and I undergo recurrent infections and annual hospital visits,” she says.
“I still bleed and have pain. I’m 34, menopausal, and no one really believes me when I say I am having a hot flush.
“I have to take daily antibiotics, wear hormone patches and take two bladder pills daily at this point.
“But I am here today and I am so grateful for medical science, the team that helped me build hope and held my hand through the darkest times of my life and all those that fought this with me on the sidelines.”
Fight for answers
For those going through cancer, or who may want to investigate possible symptoms, Ashlee has a simple message.
“We know our bodies best and it is so important that if answers from general practitioners are not sitting right with your gut instinct, then please seek a second, third, and fourth opinion if necessary,” she says.
“If I hadn’t kept fighting for answers and speaking up, I would not be here today.”
She adds: “It is okay to take time for yourself and if you need to rest, rest.
“It is your journey and everyone is different but just know you are not alone.”
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