Emily Blunt, 32, from Rugby, gave birth to her second child in August 2016 and, just a couple of weeks later, she started having a ringing in her ear. It got worse over the next couple of weeks to the point where it was preventing her from getting the sleep she desperately needed when looking after her newborn baby. Instead of being able to enjoy the early days of parenthood, Emily had to contend with symptoms which were blamed on other conditions.
She went to the GP who prescribed her ear drops – although a student doctor who was observing the appointment suggested a referral to an ENT. Several more GP appointments across two different GP surgeries followed and Emily’s symptoms were put down to tinnitus, ear infections, stress and anxiety. This was even when she then began having tremors and occasional visual disturbances. She was finally put on a long waiting list to see an ENT.
Emily said: “I have previously been diagnosed with an anxiety disorder and I think that this, along with being a new mum, impacted on how the various GPs I saw viewed me. I felt like I was going mad but I knew something wasn’t right. Again and again I was told that it wasn’t anything serious.”
It was on New Year’s Day 2017 that Emily was at home with her family that she had a visual disturbance which she said was like looking through a kaleidoscope. In a panic, Emily’s husband, Adam, called 999 and following advice they went to A&E. However, following a brief assessment, Emily was told that she probably had a migraine. She was referred to the eye clinic and seen by the ENT who also found nothing wrong.
A consultant did refer Emily for an MRI scan but pointed out that there didn’t seem to be any need to do so. Emily had MRI scans with and without contrast dye and then was sent a letter with an appointment for in two weeks’ time.
“I was then having anxiety because I was so worried that I would have another significant visual disturbance. It was crippling me. I saw an episode of First Dates on television, when someone who had been diagnosed with a brain tumour had similar symptoms to what I had been having. This prompted me to push for an MRI scan. It wasn’t easy and I did feel like this was my decision to make.”
Emily.
Emily added: “But, even when we went to the appointment, I still believed that they would say I had tinnitus and that was all. My husband and nine-month-old baby went along still believing that we would be told it’s nothing serious but, as soon as we walked into the room, I could sense that actually may not be the case. My heart sank at the news – I looked at my family and I asked if I was going to die.”
Emily was told that the scan had found a mass on her brain which they suspected was a tumour. She was booked in to see a consultant a week later when she was told that she had what they thought was a low-grade Glioma but that it was inoperable as it was too deep in her right temporal lobe. Emily is now on a watch and wait treatment programme and she has scans every six months to monitor for any changes which may mean treatment is required.
Emily said: “Being on a watch and wait treatment programme is so nerve-wracking. Every time I have felt poorly, I have convinced myself that the tumour has grown – even though it has remained stable. I feel really emotional when it’s time for a scan as it really hits home that this is actually happening to me and, of course, the wait for the results is horrendous.”
The diagnosis has had a huge impact on Emily’s life. Following her diagnosis, she began to experience strange phantom smells including burnt toast, fire and petrol. These were diagnosed as a type of seizure and so Emily now takes medication which has stopped them from occurring alongside medication for continued visual disturbances. She has also put on weight as she lives a less active lifestyle, she struggles with fatigue and short-term memory loss.
Emily and her family have been supporting The Brain Tumour Charity’s flagship fundraiser, The Twilight Walk.
Emily has also changed her jobs from being a full-time care assistant, which she loved, to a long period of unemployment before she studied childcare and she now works part-time with a local toddler group.
Due to the seizures, Emily had to give up her driving licence. This meant that her daughter (name) had to move to a school which is walking distance from their home instead of the car journey to the school which she had attended since reception class.
Emily said: “Losing my licence was like being stripped of my independence but family and friends were extremely helpful. My daughter joined a new school and she surprised us with how well she settled in, made new friends and thrived academically. As hard as losing my license was, it meant that we had a few more adventures on the bus and, of course, doing more walking than I would have done before. It has all shown me how resilient my family and I are.
“Experiencing my brain tumour symptoms so soon after having my son makes me so sad. I couldn’t get to treasure those early years and the many ‘firsts’ with him. I feel like he hasn’t and probably won’t experience the mum I so desperately wanted to be. Now, I am the tired mum, the up and down mum and the forgetful mum – my son asks “Why are you so forgetful, Mummy?” and we have had to explain that Mummy has a ‘poorly’ on her brain. My daughter, who is older, is completely aware and also knows what to do in the event of an emergency.
“I have tried to stay as positive as I possibly can but there is so much time that I wish I could have back – I am still trying to get used to my ‘new normal’ and the ‘new me’. I am lucky to have so much support around me from my children, family, close friends and, of course, my husband – we hope to renew our vows soon.”
Emily has also praised the support offered by The Brain Tumour Charity, especially its online support groups on Facebook. She says finding out about other people’s stories inspired her to share her own. Emily’s husband and his family also took part in the Charity’s flagship fundraising event, The Twilight Walk in 2019 which Emily volunteered at and she hopes to do so again – as well as take on the walk herself too.
She added: “I would advise others who have been affected by a brain tumour diagnosis in any way to reach out to the support available, such as that from The Brain Tumour Charity, as it helped me to realise that I am not alone.
“I would also encourage anyone concerned about the symptoms they may be having to trust their instincts. If you believe that something isn’t right then don’t be afraid to push for answers and seek a second opinion. You know your body better than anyone else.”