A brave woman has told her cancer story to mark Brain Tumour Awareness Month. Naomi Savage was just four-years-old when doctors diagnosed her with a brain tumour.
Her mother Lucy, who worked as a nurse, noticed that her daughter's right eye used to squint and that she had a slight tremor in her right hand and leg. To be on the safe side she took Naomi to A&E where they did a CT scan.
It was then, in 2007 that she was diagnosed with a grade 3 ependymoma brain tumour. Speaking exclusively to Yorkshire Live, Lucy said: "In the shortest space of time, our whole world turned upside down, but we were mercifully shrouded in the protective cotton wool of shock.
"I remember watching Naomi sit calmly and happily, watching a magician on the children’s ward, whilst tears streamed down my face. She was oblivious to the shattering news we had just heard."
The tumour was 10cm by 10cm. She was moved from her hometown hospital to a specialist hospital in Leeds for emergency surgery to have it removed.
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Lucy continues: "Our hopes that the tumour might be benign were shattered when the oncologist revealed that Naomi had a grade 3 ependymoma. The chemotherapy regime she embarked on was horrific. As an adult chemotherapy nurse, I was used to treating patients on a day-care basis.
"I didn’t even know regimens like hers existed. Naomi endured five different chemo drugs administered across four cycles every fortnight, totalling 28 sessions over 15 months – most of these as an inpatient."
She then underwent second craniotomy to remove more of the tumour and then had more chemotherapy. The following year she had a third surgery to remove the last parts of the tumour but lost the right peripheral vision of each eye as a result.
Naomi, now aged 20, says: "It means that often I miss things, like a friend waving at me and I am hopeless at catching! It also means I won’t ever be able to have a driving licence, which didn’t bother me initially, but now that I am older, is quite frustrating as it means I have to rely on other people rather than being independent.
"I also have to contend with processing issues, so I am a bit slower at learning new things or getting what people are saying or doing. For example, it took me a long time to pick up how to use a cooker."
Every two years Naomi has an MRI scan to check that the tumour has not returned. She is now at university studying Film and TV production, and also raises awareness on brain tumours. She said: "Just 12% of brain tumour patients survive beyond five years compared with an average of 50% across all cancers.
"I find it sad that research into brain tumours is so underfunded, especially with the stats being what they are. I’ve come across loads of people who’ve had brain tumours and it’s usually ended badly, so I feel lucky in an unlucky situation."
In 2008, Lucy set up the Naomi's Fight for Life Fund to try to raise money for research into brain tumours. It is now a Fundraising Group under the umbrella of national charity Brain Tumour Research. Naomi said: "Over the years we’ve raised more than £70,000 which is helping find more effective, less brutal treatments and ultimately a cure for brain tumours."
According to Brain Tumour Research, brain tumours kill more people under the age of 40 than any other forms of cancer, but just 1% of the national spend on cancer research is dedicated to brain tumours. Brain Tumour Awareness Month is the group's biggest campaign, ending on March 31 with 'Wear a Hat Day'.
Matthew Price, community development manager at Brain Tumour Research said: "We’re really grateful to Naomi for sharing her story to raise awareness.
"It’s only with the support of people like her and her mum and all who support Naomi’s Fight for Life Fund that we’re able to progress our research into brain tumours and improve the outcome for patients who are forced to fight this awful disease."
