Daniel's Story

Daniel was 20 and had just finished second year of a Law and Criminology Degree. He had been having regular headaches and sickness since Autumn 21, but the GP was not able to diagnose anything specific.

Despite this he did well in his second-year exams in May 22. Back at home the headaches got worse and he also started to have pain in the back of his head when walking.

His GP thought it may be tension headaches but also referred him for CT scan, which he had on 18 Aug 22.

He had a call from the GP the next afternoon to come in straight away. The CT scan had picked up an abnormality at the back of his head.

He was admitted into Southmead Hospital Neuro Surgery unit that night where he was seen by a consultant who diagnosed a rare cancerous medulloblastoma brain tumour.

It does not seem possible how your world can be so completely turned upside down in an instant. Making the phone calls to family and friends was one of the hardest things to do.

Daniel had an operation to reduce pressure on the brain on the 20 August, and then the main operation to remove the tumour on 26 August. He was in surgery for 11 hours.

Seeing him in intensive care was very hard. The side effects from the operation were not great. He could not swallow, barely speak, he had severe double vision, could not use his right arm or hand and could not walk. Despite all that he was having to deal with, his attitude and resilience was amazing, he kept smiling and giving the thumbs up to us and his consultant.

He was in intensive care for 11 days before being moved back the neuro surgical ward to continue his rehabilitation. He could not swallow, and so had to be fed by tube for several weeks. We remember a phone call from him to say that he was allowed to eat again, he was so excited.
In hospital he had regular physiotherapy to help gain control of his hand, arm and walking, and speech therapy to help his swallowing and talking.

He started 6 weeks of daily radiotherapy when he was still in hospital, having to be taken from Southmead to the Bristol Haematology and Oncology Centre by ambulance. Radiotherapy is not fun, he found losing his hair very tough indeed. But we did discuss it before hand and he had decided that he would shave it all off at the first sign of losing it.

After 8 and half weeks in hospital he was well enough to come home whilst he finished radiotherapy. It was fantastic to have him home, but quite scary as we adapted to a new routine.
He started chemotherapy shortly after his 21 Birthday, with 4 nights in hospital. We were so grateful that he was discharged on Christmas eve and were able to have Christmas at home together.
He had a further 7 chemotherapy rounds, with both inpatient stays and outpatient visits. He lost his hair several more times, and finished in September 2023.
On top of the radiotherapy and chemotherapy he has had physiotherapy and speech therapy every day to improve the control of his right hand, arm and walking. This has involved regular sessions with therapists and a daily routine, 7 days a week, of 6 hours rehabilitation including speech exercises, hand and arm exercises, core strength exercises, balance and coordination exercises, hand writing and typing exercises.
He amazes us every day with his can-do attitude and determination to help himself improve as much as he possibly can to regain as much of what he was able to do before.

He was a keen sports man, enjoying playing football, cycling, golf, and hopes that his continuing hard work will help him get back to some level of participation again in the future.
With support from his University, He is planning to return to university September this year to complete the last year of his degree and is working hard to become as independent as possible.
The break away at Ben’s Retreat is a very welcome opportunity after 19 months to take some time out as a family away from the usual rehabilitation routine to unwind a little and relax. We are so grateful to the Ben Saunders Foundation for this.