Dan’s story

Patient stories

Dan Horrocks was aged just 20 when he was first diagnosed with a brain tumour. It was a diagnosis which had been missed by GPs and came about as a result of a chance eye test. Dan and his wife Sonia, who have been together through everything, are eager to raise awareness about symptoms and early diagnosis as well as the long term impact that brain tumours have, and we are so grateful to them both for supporting our work.

This is Dan’s story in Sonia’s words:

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Delayed diagnosis

In 2011 and aged 20, Dan was in his second year at Aston University in Birmingham when he started suffering from really bad headaches. They were so severe that he would often be sick, usually in the mornings, but despite his worsening condition, he was repeatedly sent away by three different GPs. One told him he had a trapped nerve. On another occasion he was given motion sickness tablets for an imbalance in his ears. At one stage he was even told that his problems were psychological, and he was prescribed anti-depressants. This went on over a period of about six months despite Dan being very healthy and fit.

Simultaneously, as Dan’s headaches persisted, he got a free voucher from Vision Express opticians for an eye test. Not one to turn down a freebie, Dan took the offer of the eye test at their branch in Merry Hill and he couldn’t have prepared himself for what happened next. He was told there was something pressing on his optic nerve and that he should go to his local A&E as soon as possible. He was sent to Russell’s Hall Hospital in Dudley where an MRI scan revealed he had a tumour the size of a golf ball growing on the fourth ventricle of his brain. It was blocking the flow of cerebral spinal fluid and causing pressure to build up which was leading to the awful headaches.

The brain tumour caused great concern and Dan was sent in a blue light ambulance to specialist hospital, the Queen Elizabeth Hospital (QE) Birmingham where doctors had great experience in treating people’s heads/brains. It was the hospital where Malala was treated when she was shot in the head.

At the QE, Dan had a total resection and had to stay in for six or seven weeks. He had to learn to walk, talk and think again and rebuild his life. He had double vision caused by the tumour having grown so large and had to learn to get used to wearing glasses. One of the worst parts for him was the muscle wastage caused by such a long time in bed and the hospital breakfast (luckily he had someone willing to bring him food everyday instead – me!)

After the resection, it was revealed Dan had a grade 2 ependymoma. It was benign but the type of tumour he had could grow back at any time.

Recurrences

After that, Dan had regular scans to check for any sign the tumour was growing back and, in 2014, he was told that he had a recurrence. He had further surgery which identified this tumour was a malignant ependymoma and he would need radiotherapy to effectively sterilise the area.

The next four years ticked along and, by this time Dan had graduated and was living in London and working at Westminster as a parliamentary researcher. In 2018, Dan received the news that his tumour came back for a third time. This time he had surgery in Birmingham which found his tumour was once again a malignant ependymoma but in a new location. He had to have radiotherapy again and chose to have it nearer to our home at the Royal Marsden in Chelsea.

Psychological impact

The location of this tumour really knocked Dan. Before, his tumour had the biggest impact on his balance and ability to think. Now it was affecting his motivation and he turned into himself, unwilling to go outside and see people. He would binge watch TV shows and had no motivation to even eat and his memory was worse than ever after having three rounds of surgery.

It worried many people so when Dan was going through radiotherapy in 2018, we decided to rescue a Shih Tzu called Bella and she has become his constant companion. She gave him life again by forcing him to take her for walks and get some fresh air and she added structure into his life, helping him remember things around Bella’s schedule. To help Dan with his back to work journey, it was agreed with his employer, the Royal Marsden and with numerous charities that he would have special dispensation to take Bella with him to work at the House of Commons in Westminster.

Looking forward

Dan’s treatment ended in November 2018 and while he continues to have check-ups things are good now, although he knows that his tumour will probably come back at some stage.

 

Dan and I got married in July 2020 – later than we originally planned and the day was scaled down because of COVID – we have just moved to a new flat in London and Dan has just turned 30 and is feeling optimistic about the future.

I hope that by sharing Dan’s story, we will continue to highlight this injustice and that people who, like Dan, have unexplained symptoms continue to push for a diagnosis.

Sonia Khan | June 2021

 

 

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Brain tumours can affect any one of us, irrespective of age, lifestyle or general health. Every 33 minutes someone in the UK receives this shocking diagnosis, and when faced with the words ‘You have a brain tumour’ the right support to help navigate the path ahead is vital.

Brain Tumour Support wants to ensure that no one feels alone at any stage of that journey. So if you are able to make a donation, helping us to be here for more people like Dan and Sonia, we would be very grateful. Our support services are always free to access and rely on the generosity of fundraising and donations to be maintained. Thank you so much.

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