Doctors kept telling Jodie she was fine, but she knew the symptoms were serious
A mum whose symptoms were dismissed by 21 doctors was finally diagnosed with stage four cancer and needed a bone marrow transplant to survive. Jodie Guerrero’s battle began with a deep, throbbing pain which ran down her right arm. She discovered a lump in her breast but doctors said not to worry.
“I was told it was just a reactive lymph node and nothing serious,” she said. “But a tiny voice in the back of my mind told me something wasn’t right.”
Jodie queried the diagnosis and went from clinic to clinic hoping someone would take her pain and exhaustion seriously. She ended up being brushed off by 21 doctors over nearly a year.
“I was basically being told I was a hypochondriac,” the 53-year-old said. “Some doctors were vague, some handed me antibiotics and rushed me out the door. One even suggested it might be in my head. But I knew something was very wrong.”
The pain spread to her back, her leg went numb, and she began to lose sensation when urinating. “I was in constant physical pain, anxious, depressed, and honestly, I felt like giving up,” Jodie said. “I remember praying that maybe I’d just die in my sleep and be spared from the misery.”
In September 2006 the diagnosis was devastating. It was Stage 4 Follicular B-cell Non-Hodgkin’s Lymphoma. “I just cried when they told us,” Jodie said. “They said, ‘We’ve got wonderful news – we know what kind of cancer it is and how to treat it.’
“I didn’t understand why that was good news until they explained that sometimes they don’t even know where the cancer started. But I was still Stage 4. It was everywhere.”
The aggressive blood cancer had eaten through her shoulder, damaged her sacrum and right iliac bone, and crushed her S1 nerve, which was the cause of her leg numbness and dropped foot.
“Had they caught it at Stage 1, I might have only needed radiotherapy. But because of the delay, I needed chemotherapy, radiotherapy, and eventually a bone marrow transplant to survive,” she explains. The treatment was horrendous but worked and by 2007, Jodie was in remission.
The symptoms returned the following year; this time the cancer had wrapped around one of her spinal nerves, leaving her in further agony. In December 2014, she was diagnosed with a new cancer called myelodysplasia (MDS) which required more rounds of chemo and a bone marrow transplant.
Jodie beat the odds and she is now in remission. “I have endured 94 doses of chemo and radiation and spent thousands of hours in hospital. I now take 52 pills every day, with weekly plasma infusions. My survival is a true miracle,” she says.
“There was only a 5% chance of a cure with the transplant. But here I am, more than a decade later – still cancer-free.”
The price of survival is brutal; countless chronic conditions, central nervous system damage, lymphoedema, drop foot, and ongoing side effects from chemotherapy and immunosuppressive drugs. “My immune system is completely shut down so that my donor’s bone marrow cells don’t attack my body,” says Jodie. “The medication keeps me alive but it also leaves me vulnerable to everything.”
She can’t attend crowded places, wears a mask or face shield every time she leaves home and her family must follow strict hygiene protocols. “It’s isolating. I get most of my infections from my own family. I can’t go to big events. I constantly have to ask people if they’re vaccinated or are feeling unwell. It’s hard to maintain friendships,” she says.
Jodie’s teenage daughter Julia has been diagnosed with Crohn’s and when it flares up, she will be immunosuppressed. The pair are managing 63 serious illnesses between them and take dozens of medications to stay well. They desperately need a home that caters to their needs.
“If we can’t keep ourselves separate from society, either I die or both Julia and I will,’ Jodie. ‘We need a safe, custom-built home. It’s not about luxury, it’s about survival.’
“With both of us being so vulnerable, we need a home that protects us. One where we can live separately but close, to avoid passing infections between us. Without it, we could both pass away far too soon.”
Jodie and her family are now searching for a builder willing to help them create a medically safe and self-contained separate living space; either a home with a granny flat, or two attached granny flats, so she and her husband and two daughters can stay together but safe.
“We’re not asking for anything extravagant,” she says. “Just a home that allows us to live safely, to stay alive. We need a builder who can see the human need here and we have already got a piece of land, so please contact us if you can help.”
Despite everything, Jodie remains resilient, positive, and determined to help others. She uses her experience to advocate for better cancer diagnosis, housing for immunocompromised people, and patient rights.
“Since I was young, I’ve been a “glass-half-full” person,” she says. “Even on the hard days, I know there’s a purpose to all of this. If I can use my journey to help others, then I’m happy.
“Most transplant patients don’t live long, because of infections. But with better housing and awareness, I hope to beat those statistics. I want to be one of the longest-living transplant patients in the world.”