A 32-year-old woman from Southall in Ealing had a terrifying experience when severe headaches turned out to be a brain tumour.
Nayfil Hussein, a digital product owner and worker at Costa Coffee in Chancery Lane, was diagnosed with a medulloblastoma in June 2019, after suffering from severe headaches, which she initially thought were hormone-related.
She said: “I’ve had bad headaches since I was a teenager. I’ve always thought they were related to my monthly cycle and I would take painkillers to manage them. I never imagined they would turn out to be a symptom of a brain tumour.”
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Nayfil said she was initially told by her GP to ‘just ride it out’ despite her headaches being excruciatingly painful.
She said: “I was getting sharp pains in my brain and spine while I was on the train. It felt as if my brain was on fire.
“[On a holiday to Greece] I had to stay in bed for most of the holiday. It was different to my regular headaches and lasted eight days. I took painkillers to try to manage it, to no avail. In desperation, I called my GP and was advised to ‘ride it out’. I was also throwing up every morning and my vision was affected too.”
Brain tumours kill more children and adults under the age of 40 than any other cancer yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease, according to charity Brain Tumour Research.
When Nayfil went to hospital, doctors initially couldn’t find the cause of her symptoms.
“I mustered all the strength I had to walk the short distance across the road to A&E at Ealing Hospital,” she recalled.
“I waited for nearly five hours before I was admitted, as I was completely immobilised by the pain. I had various scans, blood tests and a lumbar puncture but they were unable to find the cause of my symptoms.”
However an MRI scan soon revealed a brain tumour, the size of a golf ball and in July 2019, she had 11-hour brain surgery to remove the tumour.
Nayfil said: “Before I was taken into theatre, I had to have some of my hair shaved off, which was really traumatic. My hair was my pride and joy – big and curly. I really loved it. Seeing it falling to the floor in chunks was really distressing and brought me to tears.”
Nayfil’s operation was a success but as the cancer had spread to her spine she underwent seven weeks of intense radiotherapy which caused her to lose 23kg and she was clinically underweight.
In September 2020 Nayfil was well enough to go back to work on a phased return and by January 2021, she resumed her full-time hours, which marked a significant milestone in her recovery.
She said: “I do worry that my tumour might come back and if it does, I fear that it will be terminal.
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“I’ve always wanted to have kids but that is now out of the question due to the impact of the treatment I’ve had. I did, however, have my eggs frozen before my surgery, so surrogacy is potentially an option but this is something Paul and I would have to give a lot of thought to.
“My attitude now is to try to enjoy life and live in the present.”
Motivated by her own dreadful experience, Nayfil is taking part in a Walk of Hope to raise funds for Brain Tumour Research. She and Paul are organising a five-hour circular walk around Hampstead Heath in North London.
To make a donation to Brain Tumour Research in support of Nayfil, you can fine their Just Giving page here.
Matthew Price, community development manager for Brain Tumour Research said: “Nayfil’s powerful story reminds us that brain tumours are indiscriminate; they can affect anyone at any time. We are so grateful to her and her family for supporting our cause and for committing to fundraising for Brain Tumour Research long-term. We remain focused on finding a cure, to help prevent more families from having their lives turned upside-down by this terrible disease.”