Carol Maw has published the book in the hope of raising awareness as well as funds for a patient support charity
Carol Maw and family; the book she has written and published about living with a rare form of cancer(Image: Carol Maw)
A grandmother from Hull has written and published a book about her experience living with a rare form of cancer. Carol Maw, of Highfield, Sutton-on-Hull, said she wanted to help others faced with misdiagnosis and “struggling to be believed”.
Mum-of-two Carol also hopes her book – Stubborn Bravery: When the World Didn’t Listen – A Memoir of Rare Disease and Reluctant Courage – will be picked up by more health professionals as the work, she says, has already sparked conversations in the sector. The author’s book is for sale on Amazon, both in paperback and Kindle format.
Proceeds from sales are to be donated to the charity AMEND, that supports patients like Carol and is “invaluable”, she said. “They even funded my specialised counselling sessions for 14 months, which made a huge difference during recovery.”
The book tells Carol’s story of her experience being diagnosed and living with a rare tumour called phaeochromocytoma – “quite literally a one-in-a-million diagnosis”. She said: “It’s a journey marked by years of being unheard, misdiagnosed, and navigating life with ongoing uncertainty.
“While deeply personal, the story also speaks to wider themes of rare disease awareness, patient advocacy and what happens when people know something is wrong but struggle to be believed. Since publication, the book has sparked conversations among healthcare professionals and readers who see their own experiences reflected in it.
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“My hope in sharing it more widely is simply to raise awareness and help others feel less alone.” A phaeochromocytoma is a rare tumour of the adrenal glands, which sit above the kidneys.
The symptoms and signs can include headaches, heavy sweating, heart palpitations, feeling or being sick and feeling anxious or panicky. “Other patients like me have similar stories of being misdiagnosed with mental health issues or panic attacks,” said Carol.
The NHS says some people with a phaeochromocytoma do not have symptoms, and their condition is either never diagnosed or only discovered during tests for another problem, such as high blood pressure. Others have symptoms for many years before a phaeochromocytoma is diagnosed.
“I wanted to share my story through my book to help other patients know they are not alone. In the feedback, one guy put in one review that he is 51 and it is the first time in his life he felt heard – that’s exactly what I wanted to be able to achieve.”
Carol’s health journey has taken her to Hull and Leeds and now Sheffield, where she is under the care of “the top guy in Europe, that’s how rare we are”. She said: “When I did my book and got in touch with my consultant in Hull, who was absolutely amazing when I got my diagnosis, he said he was happy to use my book to help with training.
“The first thing he said was, ‘you can’t blame your GP because they might see this one time in the whole of their career’. If I can raise awareness among GPs I would like to do that.
“I work for the City Healthcare Partnership in Hull and my book has been featured on their internal blog that goes out to GPs and about 2,000 healthcare workers. The next appointment I have in Sheffield, I’m taking a load of copies with me.”
The book, published in December, is based on the journalling Carol started in January 2024, when she “first got stable” with the disease that had unfortunately spread during the delay in diagnosing the condition. “It’s treatable but not curable.”
Carol has undergone MIBG therapy. “It’s internal radiotherapy, this tumour won’t respond to chemotherapy,” she said.
“It makes you radioactive so you have to spend four or five days in a lead-lined room in a hospital. Three rounds of it got me to stable status.
“I live pretty normally now. My main issue is I can get tired and I have to be sensible about what I do.
“As a family we have got through it together (Carol has a husband, two grown-up daughters and a granddaughter).” Her book has already made sales in the US, Canada and Germany, as well as in the UK.
She said: “If I can just get it out there as much as I can, to make people think, to make GPs think a bit outside the box, that is what I’d like to be able to do.”