In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
On New Year’s Eve, 2007, we were with friends and Donna felt faint and dizzy, although she didn’t actually faint. We sat her down and did all the things you do when someone feels faint. There was even a lady on hand at the party who used to be a nurse. We then decided to go home as Donna continued not feeling too good. She woke up fine the next morning.
On 5th March 2008, Donna was walking the kids to school when again she had a dizzy spell, but yet again she didn’t pass out. Feeling frustrated, she decided to go to Southport & Formby District General A&E where, after waiting almost four hours to see anyone, she was given the once over and discharged, but not without the doctor telling her to come back if it happened again.
Eight days later, Donna was on her way back home, having walked the children to school, and was talking to one of the other Mums when she had another “funny turn”. She went back to A&E where yet again she faced another lengthy wait before being seen. They couldn’t find anything wrong and wanted to send her home, but Donna insisted she wanted to see the same doctor she had seen two days previously and decided to wait for him to come on shift at 7pm. He admitted her for observation overnight on the stroke ward.
It was only when Donna was recounting her episodes the next day and mentioned experiencing a slightly metallic taste in her mouth that one of the consultants – Dr Patrick McDonald (who incidentally was one of the Dads on my son’s football team) – thought that Donna’s problems could be brain-related and called for an MRI scan to be performed.
I received a phone call at work mid-morning telling me that the doctor and nurse wanted to see me. I immediately realised that it wasn’t going to be good news. Before I reached the hospital, Donna rang me in tears. She had been told already that she had a brain tumour, without me even being there with her, and was physically sick at the news.
We were told that Donna needed surgery and probably further treatment, and would be transferred to the Walton Centre in Liverpool immediately. So we then had to sort out what to do with the children while Donna was in hospital and how we would tell them. They were eight, 10 and 16 at the time – the eldest about to do his GCSEs.
On 19th March 2008 Donna was cut from ear to ear for her craniotomy to remove as much of the tumour as was possible and then closed up with metal pins. We were told that she had a grade II oligodenroglioma (with some traces of grade III) on the front, right-hand side of her brain. Mr Neil Buxton, her consultant, told us that, given a choice, it was the best place to have this kind of brain tumour. However, as he explained, you can never be sure that there are not residual tumour cells, so Donna agreed to then undergo radiotherapy.
Later that month Donna was admitted as an outpatient to Clatterbridge Hospital on the Wirral. She was fitted with a mask and underwent 32 sessions of radiotherapy in total, going to Clatterbridge on a daily basis until June. Following the treatment she was monitored every three months with scans, then six-monthly until she had had three years without a seizure. Donna was incredible throughout it all, only really complaining about not being able to drive the kids to all their activities as it is mandatory to surrender one’s licence following a brain operation.
The operation and radiotherapy seemed to have done the trick. Donna was moved onto annual scans, even though she and her Mum really wanted her to remain on six-monthly monitoring.
On the 8th March 2012, having had her first annual scan the previous month, Donna was called in for more scans because “something had flagged up”. We then received the devastating news that Donna’s “traces of grade III” had taken hold and come back as a grade IV glioblastoma.
The plan was to try chemotherapy initially and she underwent a course, but sadly the response was unsuccessful. Then in July they decided she should try CCNU which was also unsuccessful. On 25th October they decided debulking and irradiation was one of the few remaining options. However, Donna was deteriorating rapidly and the tumour becoming more aggressive. It was eventually decided she wasn’t well enough to undergo surgery. All options were running out really. By November we were told that there was nothing more that could be done.
We only discovered brain tumour experts – Professor Geoff Pilkington at the University of Portsmouth and Professor Garth Cruikshank at the University of Birmingham – late on into Donna’s journey. It was really too late for her to have any alternative therapies so she came back home into palliative care. We turned the lounge downstairs into a bedroom for her. I remember clearly crushing up her medications into yoghurt, particularly the anti-seizure one which had such an awful taste. I felt so guilty.
Donna was amazingly positive throughout everything – so composed and dignified. She didn’t break down really through all the hospital visits and even coped admirably with the MRI scans, despite being claustrophobic.
On 19th December 2012, aged 43, Donna slipped away, mercifully not in any pain. We were all with her – our children, her Mum and Dad, her brothers and I.
When you lose someone like this you realise how finite life is. How important it is to live your life to the full and make it worthwhile and not waste it. Donna definitely “made a difference”. The numbers at her funeral are testament to the enormous number of lives she touched and the high esteem in which people of all ages held her.
We made a Just Giving page initially so that people could donate to Brain Tumour Research instead of buying flowers for her funeral. My eldest son, who plays in a band called Laid Back House Fire, held a gig and a raffle in the local pub (The Freshfield Hotel in Formby), my younger son and his friends did a sponsored climb at Awesome Walls in Liverpool (an indoor climbing wall) and my daughter’s Guides group (4th Formby Guides) held a sponsored walk called Donna’s Dream where everyone wore angel wings, even the dog. Added to these, friends and relatives have held a number of other events and so we have quietly already raised enough to fund seven days of research at a Centre of Excellence. We hope to raise the profile for the desperate need for greater funding for research into brain tumours.
Donna was an inspiration to so many people of all ages. She was thoughtful and caring, always thinking of others. Even the nurses commented on what an amazing patient she was. She never moaned or complained.
Family was everything to her – whether it was looking after me and the kids, organising her brothers, checking her Mum and Dad were fine, helping out in the office at school or at Brownies or Guides. She was an angel, and now she is an angel and she will watch over us all and be forever in our hearts.
Julian Osborne – November 2013