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“I spent my teenage years living with an undiagnosed brain tumour.”

Molly Day, 25, from Birmingham spent nearly 12 years of her life living with the undiagnosed symptoms of a brain tumour.

Molly started getting headaches when she was around 12-years-old which were so bad that she missed a lot of school due to their intensity and the sickness which often came with them. She would frequently have to spend up to a week in bed every time she would be affected by what had been diagnosed as migraines.

Molly had been to the GP and also to A&E several times over the years but she was never offered a scan to investigate further what could have been causing her symptoms. She got used to being told that nothing was wrong and that she just needed to learn to live with her symptoms.

However, when Molly was 24, her symptoms significantly progressed. She spent six weeks bed-bound as she was frequently sick, had searing pains all over her head, struggled to see and she regularly passed out. She also experienced one period of paralysis when she was unable to speak or move for a few hours.Due to Covid, she was only able to get telephone appointments with her GP. She also went to A&E three times. Yet, she was only offered paracetamol and was told that nothing was wrong.

Her family took her to A&E at Heartlands Hospital where she passed out once again so Molly was rushed through for an emergency CT scan. This found what was at first thought to be a cyst on her brain. She was transferred to the specialist team at the Queen Elizabeth Hospital in Birmingham.

The cyst was soon then confirmed to be a large brain tumour, around the size of a tennis ball, and so Molly was scheduled in for surgery the next day to remove it. This was during the latter stages of Covid so Molly had to say goodbye to her partner, Jamie, and mum and be transferred elsewhere on her own. It also meant that visiting was restricted to one person for an hour each day.

Molly said: “I knew something wasn’t right, of course, but never in a million years did I think that I could have a brain tumour. Weirdly, I felt a huge sense of relief when I was diagnosed. After being told by so many medical professionals that nothing was wrong with me it was good to know I wasn’t just making things sound worse than they were.

“I was frightened as I didn’t know what to expect or what was going to happen though – I didn’t know much about brain tumours but I did think that I was going to die, especially with all of the symptoms I was having.”

After the surgery, the tumour was confirmed to be a low-grade neurocytoma. The surgeons were unable to remove all of the tumour without the risk of damage so Molly will now have regular scans to monitor for any changes which may require treatment in the future.

Molly was in hospital for around three weeks whilst she had two operations, after which she needed monitoring due to a temporary loss of function on her left hand side. But, just a few days after she was discharged, she started having pains in her head similar to those which she had experienced previously. The hospital told her to come back and, following another scan, Molly was diagnosed with Hydrocephalus, which is fluid on the brain. She had a shunt fitted to drain it which will need monitoring alongside the regular scans. Molly is also having counselling to help with the emotional impact of her experiences too. Around managing her ongoing fatigue, Molly is back working part-time and is looking forward to establishing her usual routine as and when she can.

Molly said: “Being in hospital alongside Covid restrictions was so awful. I had two major surgeries and I couldn’t see my loved ones to help me to make sense of what was happening.

“But I can’t fault the care I had – I remember very little except that the medical teams were exceptional. Everyone made me feel very safe and well taken care of which was a massive help – especially when I was upset and they would take the time to sit with me and comfort me through it all.

“I have been told that the shunt will be in place for the rest of my life. It is uncomfortable and I do get the odd pain from it, I can’t sleep on my side some hats press against it so I can’t wear them. But I do know that things are getting better so I just need to get on with things now and adjust to what life is for me now.

Molly found out about The Brain Tumour Charity online when she was in the hospital. She has praised the Charity for the support network it provides and the stories it shares of how people have been affected by the disease which help her to realise that she’s not alone.

She is also supporting the Charity’s new campaign ‘Better Safe Than Tumour’ which aims to raise awareness of the signs and symptoms of brain tumours in both children and adults.

She said: “I think the work of The Brain Tumour Charity is brilliant. Giving people the opportunity to speak to someone who can help both practically and emotionally really is a godsend.

“Knowing that I am not the only one going through all this got me through my diagnosis – it inspired me to believe that I could get through this because other people have done too and that has spurred me on to live the best life that I can. 

“There is a huge need for more people to know about the warning signs of this disease – so many of its symptoms get passed off as something else or are misdiagnosed which is really dangerous. I think that I should have been sent for a scan when I first spoke to my GP about my symptoms – I would phone up pretty much every week with the same issue and nothing was done.

“This is what upsets me the most – I knew that something wasn’t right but it felt like no one would believe how much pain I was in. This desperately needs to change.”

Find out more about our Better Safe Than Tumour campaign here,