West Berkshire woman had undiagnosed brain tumour for 25 years

Experience highlights need for early investigation of symptoms

A mother-of-three from Burghfield Common suffered 25 years of migraines and other complaints relating to an undiagnosed brain tumour.

Since the age of seven, Gemma Heath, 34, experienced constant headaches and migraines, for which she was prescribed painkillers. In childhood, she also started wearing glasses.

For a time, there was no obvious link between the headaches and the state of her eyesight. Her sister and mother had struggled with similar problems in their lives.

After a period of deterioration, with worsening migraines, Mrs Heath consulted doctors and was simply prescribed a different type of painkiller. Coupled with hormonal changes in adulthood, the frequent headaches became a stroke risk. Mrs Heath had begun to suffer seizures.

Remarkably, she was still able to lead a full life, holding down multiple jobs and raising a young family.

Surgical intervention was only considered in recent years.

In 2018, tests at the Royal Berkshire Hospital showed a swelling of the nerves behind both of Mrs Heath's eyes. Further examination revealed the cause to be a slow-growing tumour.

While it was in a sensitive location, complicating any surgery, the majority of the tumour was removed in a operation.

Mrs Heath still has to take a combination of drugs to address her continuing fits and headaches.

She said of her diagnosis and recovery: "Hearing the word ‘tumour' was incredibly surreal – I just felt numb.

"I don't believe the information even really sank in straight away.

"It wasn't until I saw the scan images and was discussing next steps with the surgeon that I really understood the huge impact that it was going to have on my life.

"However, I actually felt slightly relieved that we finally had a reason for the way I had felt my whole life and that I wasn't imagining things.

"I found breathing the most challenging part of my recovery.

"My chest felt incredibly heavy and even walking across a room was difficult.

"I had always enjoyed walking long distances – since I was a child this was something I had been able to do with ease.

"Finding myself unable to do the school run with my little boy was heartbreaking.

"I remember attempting to do so in the first week at home after my surgery.

"My husband held me up the whole way, but I was determined to do it."

Mrs Heath's experience has led her to set out to empower others with the condition.

She recently took part in the Twilight Walk and Conquer the Climb 2020 virtual challenges in aid of the Brain Tumour Charity.

Mrs Heath will not be cowed by the tumour's effects.

She said: "Without a doubt, the most difficult part of this whole experience is not knowing if I will live long enough to see my beautiful children grow up, get married and have babies of their own.

"We have explained as much as we can to them about my tumour, but they have questions which I still don't know how to answer because I don't have that information either.

"Although I do have some side-effects, I am healthy and I am still here with my husband and three beautiful children, so I am grateful for that."

The Brain Tumour Charity chief executive Sarah Lindsell said: "Gemma's experience is truly traumatic and it highlights the problem with a lack of awareness leading to late diagnosis which we hear about all too often at the charity.

"Gemma's brain tumour had such a profound impact on her life – before she even knew that she had it.

"This must change so that symptoms are picked up and investigated by the medical community as routine."

To learn more about the charity's Twilight Walk, visit its website.