Amanda’s story
Amanda was on an extended holiday in Melbourne, Australia in 1998 when walking on the beach one day she experienced a tingling in her head. Always one to take care of her health she went to the doctor’s on a number of occasions as she felt that this was not right but was told that it was just stress and nothing to be concerned about. Eventually she paid to have an MRI privately where she was given the devastating news that she had a brain tumour. She cut her holiday short and immediately flew back to England whilst at the same time being put on anti-seizure medication as a precaution although she had had no other symptoms apart from the slight tingling.
On her return she was immediately given an appointment to see Mr Henry Marsh, the renowned Brain Surgeon at the Atkinson Morley Hospital in Wimbledon. At her appointment with Mr Marsh she was told that the tumour looked benign but that on balance it was probably best considered to have it removed by an ‘awake craniotomy‘ which was scheduled immediately. Amanda was very scared but put on a brave face, even managing to have a joke: when asked who the Prime Minister of Great Britain was when she was woken in the middle of the operation, she said, “Lionel Blair”, which worried the nurse at the time until Amanda said she was joking and it was Tony Blair!! The results afterwards revealed that the tumour was benign and that no further treatment was required other than yearly MRI scans to monitor the situation. For four years Amanda continued with her life as normal, working successfully as a Lettings Manager and enjoying a very full and active social life.
“We are determined that our darling Amanda’s death will not be in vain and she will never ever be forgotten. In Amanda’s name we would like to make a difference to other people walking this path/fighting this disease.”
In 2002 her annual MRI showed that the tumour had returned and another craniotomy was scheduled. Again this was successful and showed that this was still benign but was a grade two astrocytoma. Leaving ICU and hospital in record time Amanda was told to go out and just live her life as normal. She did just that! Always the life and soul of the party Amanda organised great evenings out with her friends and family, there was never a dull moment!
A routine MRI in February 2007 sadly showed that the tumour was ‘on the move’ again. Henry Marsh advised that it was a very slow growth and that they would just monitor it and possibly in 5 – 10 years may have to consider surgery again. However five months later in July 2007 Amanda began to suffer crucifying headaches that left her incapacitated. A scan revealed that the tumour had grown substantially thus the reason for the headaches. It was a very traumatic time as Amanda had never had any symptoms that usually occur with a brain tumour. After her third craniotomy, test results showed that the tumour had advanced to a grade 4 glioblastoma multiforme. Despite the prognosis of this form of tumour Amanda carried on as normal with her life although she did give up her job. Radiotherapy and chemotherapy were scheduled and she sailed through these not complaining once about why she had been dealt this hand of cards. Every 6 months she had an MRI which showed the tumour to be stable.
Amanda married her beloved Yasser in October 2008 and they set up home in Liphook with their rescue greyhound Jack.
In March 2010 whilst out walking Amanda lost her speech momentarily, she went to her local hospital and was given a CT scan which showed the tumour to be growing. To operate and remove it was not an option due to the location this time but a stronger chemotherapy course was embarked on: ‘PCV’. Not one to be deterred by the side effects this medicine can produce, Amanda went to the Royal Chelsea Flower Show, the Classic Brit Awards, trips on her boat ‘Gedser’, met her icon ‘Russell Watson’ and many more trips and events whilst on chemo!
Another scan in July 2010 showed that the PCV was not working and the tumour was still growing; it was decided to try temozolomide again. Before she was able to start the course Amanda suffered a seizure at the beginning of August, the first one ever. Amanda began the 1st treatment a week later but it was becoming apparent that this time the medicine and work of her doctors and surgeons were not working. Things went very rapidly downhill and at the beginning of September Amanda suffered another severe seizure and was admitted into hospital. Just three weeks later Amanda died aged 41 with her family and her beloved greyhound Jack at her bedside.
To witness someone you love fight with courage, determination and dignity against this particular form of cancer and then watch them deteriorate and lose their battle is a very heartbreaking / devastating thing to bear. You realise that the most important things in life are stripped down to just 2 components: ‘love’ and ‘compassion’.
It is very important that so much more money is poured into researching this common but deadly form of brain cancer. We are determined that our darling Amanda’s death will not be in vain and she will never ever be forgotten. In Amanda’s name we would like to make a difference to other people walking this path / fighting this disease. If we are able to help even just one person then that will make our lives without Amanda somewhat more meaningful. We miss her more than words could ever convey and will never ever forget her.