Watch our interview here
Or you can read about Jo's story at The Daily Mirror
Six months after becoming a mum, Joanna Jonathan was told she had a rare and advanced form of lung cancer. The first-time mother, who had been looking forward to her first Christmas with baby Freya, was told it was unlikely she would live to see the day.
Joanna, 36, says she felt “like I was already dead” when doctors diagnosed the cancer, telling her it had reached stage four and was spreading to her lymph nodes and her chest. Her first thought was of little Freya growing up without her. Joanna says: “I did think, ‘It will be kinder to die now, because she’ll never have known me and can’t miss me’.” But what she never imagined was that she would live long enough to give Freya an unexpected sister – despite being told a future pregnancy would be impossible. Yet in June, just 23 months after her cancer diagnosis, Joanna and her husband Daniel, 31, welcomed daughter Dylann into the family.
Doctors said it made her the first person in the UK to become pregnant and give birth with stage four cancer. Joanna says: “I’d love to say being told I was pregnant was lovely, but it was absolutely terrifying. “She wasn’t planned and I was told I wouldn’t be able to have more children since my diagnosis, so it was extremely unexpected news. Of course I worry about dying and leaving behind two children, but nothing could make me regret having Dylann. She’s perfect. If my love for my children could keep me alive, I’d live forever.”
Joanna adds: “My medical team told me I was the first woman to have stage four cancer and have a baby. They don’t know of anyone two years into a stage four cancer diagnosis who has gone on to have a baby. It’s surreal.”
Joanna first started noticing symptoms while she was pregnant with Freya, now two-and-a-half. She had repeated chest infections, a cough, loss of appetite, breathlessness and a hoarse voice. She was diagnosed with pleurisy and pneumonia but, when things did not improve, was given a chest X-ray, then a CT scan and bronchoscopy. The cancer diagnosis finally came in July 2019 – more than a year after her symptoms began.
Joanna says: “I’d been poorly throughout my pregnancy with Freya and lost two stone. But as a young non-smoker, I don’t think it was ever even considered that I might have lung cancer. I felt so ill, I had to give up my job as a coffee shop manager but I thought they were just pregnancy symptoms. When I eventually got a CT scan I was told I had ALK-positive lung cancer – a mutation in the DNA of the lung cells when two genes become fused. Lung cancer is something you normally associate with smokers or older people but this form mainly affects young and middle-aged women. It can happen to anyone.”
Despite treatment including chemotherapy and tablets, as well as staying on contraception, Joanna became pregnant. She says: “To think I’ve been able to give birth is unbelievable when I look back at that first consultation – where I felt like I was being treated as if I was already dead.”
Although women have been diagnosed with stage four cancer while pregnant, Joanna is the only known woman in the UK to become pregnant years after diagnosis and treatment. She says: “We were told when I was diagnosed that more children wasn’t an option, so it caused lots of confusion. We questioned a lot whether we were doing the right thing, whether I should have brought a child into this world when I know my life is limited. But we’ve always said we’re just going to live our lives as best we can – and that’s a life with Dylann in it.”
Even though drug treatments are not recommended during pregnancy, Joanna and her doctors decided to continue with targeted tablet therapy, backed by regular scans and check-ups. She says: “The risks of stopping outweighed the risks of staying on them.”
Dylann was born weighing a healthy 7lb 4oz. Joanna says: “She’s an absolute delight. She’s hitting all her milestones and she’s doing amazingly.”
Although Joanna’s cancer is incurable, she still hopes to enjoy the future with her children. Through tears, she says: “I think of their wedding days and sitting proudly as the mother of the bride. I’d love to see my grandchildren born… but I know that’s unlikely. More than anything, I hate the thought of me dying and Freya and Dylann not knowing where I’ve gone – them calling for me, and me not being there for them. That breaks my heart. We’re supposed to protect our babies, we’re supposed to be here for them. It’s like a dagger to the heart. No mother signs up for this. There’s a real possibility they won’t remember me at all, only from pictures and what they’re told. But they will for ever know just how much I loved them.”
Joanna and Daniel, who is now her full-time carer, wed last November. The couple had to postpone their big day several times due to lockdown but were finally able to celebrate with friends and family in September. They have also just returned from a honeymoon on the Greek island of Kos. Despite mobility problems due to her illness, Joanna has completed a number of challenges to raise money for Lung Cancer Awareness Month – which takes place throughout November every year. Last year, while pregnant with Dylann, she rode 603 miles on a stationary bike.
For more lung cancer information or support visit The Roy Castle Lung Cancer Foundation
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