In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Mum-of-one Sylwia, 37, was diagnosed with a meningioma tumour just weeks after giving birth to her son Jack. She had been suffering from headaches, hearing loss and problems with her eyesight. Now the pharmacy technician at Derriford Hopsital, originally from Poland, is keen to raise awareness of the disease by sharing her extraordinary story.
Sylwia tells her story…
Though my tumour is low-grade, it has a huge impact on my life and I constantly worry that I will need further treatment. It was a year of ups and downs being diagnosed so soon after giving birth, but my son Jack has been a ray of sunshine through such a difficult time.
It’s been an extremely tough journey. I remember recovering from surgery, just wanting to be there for Jack, but not being able to get out of bed. It felt like I’d failed as a mum. Fortunately, I had lots of support from my partner Aaron, friends and my mum, who came over from Poland to care for both me and Jack.
My tumour, a meningioma, caused irreversible brain damage and as a result I have very poor spatial awareness and permanent hearing loss in my right ear. I was also recently diagnosed with severe depression because of the trauma I went through and this is very hard for me to cope with. I frequently cry and get angry.
“I have regular appointments with a neuropsychologist who is helping with my emotional and physical wellbeing.”
I was eight months pregnant when my symptoms began. I’d been suffering from blackouts, loss of vision and my hearing was badly affected in one ear. I went to the GP several times and I was told that I had an ear infection and I had my ear syringed.
Jack was born via Caesarean section in October 2018 and after giving birth I was physically ill for several days. Jack was admitted to an Intensive Care Unit at Derriford Hospital. I was feeling very strange, had frequent headaches and was struggling to see properly.
A few weeks after being discharged, I returned to the GP as I’d developed a right-sided facial weakness. I was also referred to the eye clinic at Derriford Hospital for an MRI scan.
“When I received the results of the MRI, to my complete horror, I was told that there was a mass my brain. My first thought was of Jack. He was just one month old. I couldn’t believe that one moment I was experiencing such joy and the next my life had fallen apart.”
I had debulking surgery in May 2019 but suffered a huge bleed on my brain. I was sedated for several days afterwards and my recovery was tough. For months, I couldn’t even wash myself. My mum had to help me with the simplest of tasks. It was heart-breaking because I just wanted to be there for Jack. I was the worst time but Jack gave me a purpose to get better. I also craved normality.
“The medication made me feel out of it and I felt like a failure, as I couldn’t form a bond with my baby. I questioned whether I should have had surgery at all.”
I’ve been offered radiotherapy to mop-up any remaining tumour cells. However, my doctor wants me to get better physically and emotionally before further treatment. I’m averse to having more surgery because of my terrible experience from the previous operation. I’m on long-term sick leave from my job as a pharmacy technician at Derriford Hospital but this is giving me precious time with Jack.
Because my illness is invisible, people don’t know what I have to go through on a daily basis. I’m determined to raise awareness of brain tumours and the devastating impact they can have on an individual. I’m also very grateful for the support I’ve had from family and friends, who have raised more than £12,000 for the charity Brain Tumour Research by taking part in the Plymouth Half Marathon in May 2019. They are also taking part in this year’s event. My manager has also been hugely supportive and we will be taking part in Brain Tumour Research’s annual Wear A Hat Day campaign with our colleagues at Derriford Hospital.
I’m feeling optimistic about the future and will see my neurosurgeon in three months’ time to discuss further treatment. I’m getting better each day and trying to be positive.
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