Alex’s story
As a mum of twin girls, Alex put her waking headaches down to modern life and just one of those things not to worry about.
The headaches became a regular occurrence to the point that Alex visited the GP and an appointment was made with a Neurologist who felt she had a Chiari Malformation where her skull was too small for her brain. She was booked for an “urgent” MRI scan, the date of which was some 9.5weeks later than her appointment with the neurologist.
Alex never made it to that scan appointment, just a few weeks after her neurologist appointment, she was taken to A&E by her husband after her headaches got worse. They fought for her to be admitted overnight on Sunday 2 February 2014, where her condition deteriorated and was eventually sent for a CT scan when she became unconscious. Her CT scan showed a “Tangerine sized mass”, she was then sent by Blue Light Ambulance from Reading Royal Berkshire A&E to the John Radcliffe Hospital in Oxford.
Alex underwent a 5hour emergency operation in the JR, spent 3 days in a medical coma before a 2nd crainiotomy operation to further debulk the tumour.
“Alex’s outlook is to “live for now”, when asked in a recent radio interview if she had down days, her response was “I don’t have time for down days”.”
Since February of 2014, Alex has undergone 3 brain operations, a 6 week course of combined Chemo and Radiotherapy and several courses of Chemotherapy in monthly cycles. She is under consultant led care at Oxford’s John Radcliffe Hospital.
In 2017, after a few years of ‘normality’, Alex had the bone flap removed due to a very low grade underlying infection. This was a set back for Alex, but one she overcame to return to normality. Unfortunately the bone flap removal meant she had to give up working as a Teaching Assistant as the risks were too great for accidental injury working with children.
During a regular quarterly scan in April 2018 the tumour was found to have grown. This unfortunately led to further surgery to reduce the tumour. During this operation, a biopsy sample was taken and the tumour was found to have morphed into a GBM4. Some complications with infections saw this operation turn into a 4 week stay. Alex is now undergoing a course of TMZ (Temozolomide) chemotherapy in the hope this will pause the growth.
Alex and her husband, along with the support of their family and friends want to turn something negative into a positive and help raise funds for the Brain Tumour Charity, to allow them to fund vital research and carry out the good work supporting families with Brain Tumours.
Alex’s outlook is to “live for now”, when asked in a radio interview if she had down days, her response was “I don’t have time for down days”. Let’s follow her example and not put things off in case it never happens.