In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Probate genealogist Dan Abel was diagnosed with a grade 2 astrocytoma in 2012 after a Specsavers optician noticed swelling on both his optic nerves. The father-of-three, from Rayleigh, Essex, had been suffering with headaches, impaired vision and occasional weakness in his arms and legs, but all of his symptoms had been attributed to migraines. He underwent three brain surgeries, radiotherapy and chemotherapy but died at home in his wife’s arms four years later. He was 43 years old.
Here is Dan’s story, as told by his wife Katherine …
I remember watching the Queen’s Diamond Jubilee celebrations on the TV in the A&E waiting room at Southend University Hospital, Essex, on 3 June 2012. Dan and I were waiting to be seen having been sent, letter in hand, straight from a routine optician’s appointment. Dan had been experiencing increasingly severe headaches for around two years. Numerous visits to the GP had got no further than medication for migraines which made no difference. In the end, Dan requested a referral to a neurologist himself. This appointment, which was a week before we ended up in A&E, concluded that his symptoms of headaches, blurred or loss of vision and occasional weakness in his arms and legs, were down to migraines but an MRI was booked anyway. In the meantime, I encouraged Dan to see his optician to get his eyes checked. He’d had laser eye surgery a few years before and we thought perhaps that was the cause of his vision problems. The high street Specsavers optician took one look, saw pressure on both optic nerves and sent him straight to A&E.
“The CT scan at the hospital that day showed a large mass on his right frontal lobe.”
His first craniotomy took place on 21 June 2016 at Queen’s Hospital, Romford. They removed as much of the tumour as possible and the diagnosis was a grade 2 astrocytoma. From this point onwards, I would spend time every day researching as much as I could about brain tumours. Searching through various websites and reading medical papers, I looked for the best treatments, the best hospitals, what sort of doctor we should be seeing and, most depressingly, the prognosis. Dan, however, never once looked into it and never asked how long he was likely to live. He would say he was just going to trust the doctors and do whatever he was told. He knew I was looking into it, but he didn’t want to know.
At this time our children, William, Oliver and Emily, were aged six, four and five months old respectively. It was an incredibly stressful and difficult time. We are fortunate to have family close by who all helped, stepping in to look after the children to ensure their lives were disrupted as little as possible and the boys, who knew Daddy had been having headaches, were told he had an operation to help the headaches get better. With Emily being so young, I would find myself sleeping on a mattress on the floor of her room so that I could feed her in the night and not disturb Dan who needed to recover. I am not known for my nursing abilities and am incredibly squeamish, and on his first night home after surgery he needed help redoing his bandages. I ended up laying on the floor needing a minute to stop myself from passing out as I wasn’t quite ready for the sight of the ear-to-ear staples over his head. This was an incredibly difficult time for Dan.
“Going from being a very confident and capable dad and husband to feeling so vulnerable and out of control was very hard for us all.”
Recovery from that first op was not straight forward. There were issues with his wound leaking cerebrospinal fluid (CSF) and swelling occurring. Various fixes were tried and we started to feel like inconveniences at Queen’s. Waiting for ages to be seen, looking for reassurance and being told that we should have just gone to our local A&E. After abandoning a holiday to Dorset due to continuing leakage and headaches, Dan was re-admitted for a full clean-up of the wound and a lumbar puncture to relieve the pressure and swelling that had built up on his head and things finally settled down.
The oncologist at Southend had brushed Dan off with a comment about the tumour being low-grade and ‘may not have any change in 10 years’ and said he would be scanned regularly under the ‘watch and wait’ protocol. We felt increasingly lost at this time and I began looking at alternatives for his care. My hours scouring various online forums kept bringing up that we needed to find a neuro-oncologist who specialised in low-grade gliomas and I came across Dr Jeremy Rees at the National Hospital for Neurology and Neurosurgery in Queen Square, London. Dan requested a referral via the GP, which did not take long at all, and the day we met him, we immediately felt listened to and that we were in the best hands.
“He was honest that the tumour was going to progress and likely get worse but we felt completely assured that it was the right place for his treatment.”
A routine scan in late 2013 showed tumour progression despite Dan not having had any problems or further symptoms. Surgery in January 2014 showed the tumour was now a grade 3 anaplastic oligoastrocytoma. This surgery in London under Neil Kitchen removed almost all visible tumour. Dan was put into a clinical trial and we were all pleased when he was selected to receive the full weight of radiotherapy plus temozolomide chemotherapy treatment for six months more. Dan tolerated this treatment pretty well. Life was almost normal, he continued to work throughout as a self-employed probate genealogist and we tried as much as possible to enjoy life with our young children.
His only real issue throughout was not being able to drive. This loss of independence was very hard, especially with young children who needed taking here and there. Dan’s friends were great at coming and picking him up for a night out and he was still able to enjoy his beloved fishing hobby, as we have a lake very close to our house he could walk to. I know he struggled with feeling down, feeling the pressure of running his business and looking after me and our children. He became more withdrawn and tired but otherwise never let us see how he was really feeling and I felt it was my responsibility to be the one ‘keeping on’ and not letting him see that I was worried or that the children were suffering because of it all.
Despite this, he signed up to be a Cub leader at the pack William attended. He loved this, it gave him an activity to enjoy with William and he loved the whole ethos of the group. His main aim was to get all the kids fishing, so he was delighted to be able to take over the local lake near our house with the Cubs, armed with bamboo rods they had helped make at one of their Cub sessions. It was organised chaos but everyone had the time of their lives and the session ended with Dan in the lake, having jumped in to rescue his favourite rod which almost got taken away by a carp. Obviously, this was the absolute highlight for all the Cubs and is still fondly remembered now.
“The Cubs and their leaders formed a guard of honour at Dan’s funeral, which was incredibly moving but a great comfort, especially to William to have his friends lined up along the way.”
In July 2015 we were thrilled he received his license back and could drive us on our family holiday to his parents’ holiday home in France, however his routine scan showed recurrent tumour growth and further surgery was planned in late August on return from our holiday.
“This seemed to be a pattern; small moments of hope and happiness followed by yet another setback and a reminder that, despite trying our very best to remain positive and keep moving forward, this brain tumour was relentless.”
We’d had the call telling us the previous tumour was grade 3 while arriving at the Legoland hotel with the children the previous year. We had booked a day trip to Paris by Eurostar with the children and planned for the surgery to be the day after. I will never forget watching the children enjoy the merry-go-round in the Jardin des Tuileries, swinging Emily between our hands, travelling on an open-top bus and carrying a sleeping Oliver off, then watching Dan take William up to the first stage of the Eiffel Tower, all the time worrying about what was to come. He was having to take pre-op calls on his mobile as we enjoyed lunch outside at a café.
“I can’t now imagine how we coped but for the children we had to.”
His surgery went well but signalled the beginning of the end as it was now a glioblastoma multiforme (GBM). He started back on chemotherapy but there were already signs of growth just a couple of months later. Dan suffered a terrible tonic-clonic seizure in bed one night in around October 2015 and I honestly thought that was it. His seizures just kept coming and it ended up with about 10 paramedics, doctors and an emergency response team in the room to help get him down the stairs and to hospital. Our priest came to him in the hospital and it was an incredibly frightening time but he rallied and seemed to be doing well until late spring 2016.
By the summer he was increasingly tired, had withdrawn almost completely and eventually began to lose strength in his legs. It was truly horrible to watch the man I loved disappear. The children were now 10, eight and four. William was in his final year at primary school and in the September, Emily had her very first day at school. He wasn’t able to come in with me to take her on her first day and was not well enough to walk her to the bus stop like he had done over the years with the boys to catch the school bus. There were times when he would fall at home and I remember having to ask Oliver to come and help me get his dad up. Looking back, these must have been such frightening times for them all to cope with.
“Their dad was strong and fit, would run half marathons and build treehouses for them; it can’t have made any sense to see him like this.”
By the end of September, he was in bed, sleeping mostly, and we had made contact with the palliative care team. We were incredibly fortunate to have a family friend who was head of the hospice at home team at Havens Hospices in Southend, which was local to us. Without her, we would never have known that their amazing team of carers could come out to our home. They looked after Dan with such compassion and respect but eventually it became too much to manage at home with the children too and he was admitted to the hospice. He was close to dying on the day he was admitted. All his family and close friends came to visit to say their goodbyes. The hospice doctor spoke with his consultant in London and it was agreed to try a final increased dose of steroids.
I went home that night to be with the children, hoping there would be time for me to get back to him if they called. When I arrived the following morning, he was up in bed eating his Weetabix. He spent about two weeks in the hospice, which was an absolute godsend for all of us. He was cared for so well and I could concentrate on being his wife and mum to the children. His family and many friends were welcomed at all hours. His mum and brother could sleep over and I was able to spend a night there. His best friends from Australia and South Africa flew over and wheeled him out to enjoy ice cream on Southend seafront and even a Guinness in the pub in Old Leigh.
“He died at home in my arms on 17 November 2016, five years ago now and 10 years since his diagnosis.”
William, Oliver and Emily feel his loss hugely and it is still a struggle for all of us, his parents and siblings too. I have tried to make some positives out of the situation and have taken on some fundraising events for Brain Tumour Research after a group of friends signed up to do an inflatable 5k run. Following this, I have done a skydive for the hospice, organised a group to take on a marathon walk for cancer charities and we held a black tie ball which raised £10,000 for Brain Tumour Research in March 2020. Even Emily held her own little fundraiser, raising nearly £2,000 after being sponsored by our ever generous friends and family and her school, for doing little odd jobs around the house which she even spoke about on our local radio station, BBC Radio Essex.
I wish we didn’t have to do any of this. Dan was 43 when he died and should still be here now. There should have been some progress made in treatments for brain cancer since he was diagnosed, but there has been barely any. The prognosis for someone diagnosed today should be better than it was for Dan 10 years ago and it isn’t.
“We will keep fundraising and keep remembering Dan in the hope that no more children should have to grow up without their dads.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Dan’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacyTogether we will find a cure