Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
It was in January 2008 when we had just returned from a holiday in Florida that Wayne first started to feel poorly. He thought it was a cold. Wayne went to the GP a number of times continuing to feel unwell and was treated for an inner-ear infection.
Then he spent the whole of one weekend in bed and didn’t want to eat or talk. We visited the GP who was sufficiently concerned to refer him to Grantham & District Hospital where Wayne had a CT scan. They found a tumour in his brain. This was a massive shock to us, however, Wayne felt relief that they had found something wrong as he had been feeling so unwell for a couple of months.
Wayne was transferred to Queen’s Medical Centre in Nottingham, which specialises in neuro-surgery, where he underwent a craniotomy to remove what was diagnosed as a benign haemangioblastoma in his cerebellum. Whilst Wayne was in hospital he didn’t see his children for seven days. We had left our young daughter Hollie with her grandparents when Wayne was referred for the CT scan.
The following year, we had another devastating blow when a scan revealed that there was some regrowth of the tumour – it is pretty much impossible for surgeons to be absolutely certain whether they have managed to remove all traces of a brain tumour, particularly when trying to access an area as deep into the brain as the cerebellum.
Wayne was recommended for Stereotactic Radiosurgery at the Royal Hallamshire Hospital in Sheffield (the largest of a few centres in the UK to offer this). When we googled “Stereotactic Radiosurgery” – which uses a large number of precisely directed beams of radiation (201 to be precise) to treat the abnormal tissues or blood vessels in the brain – we found ourselves watching a video which explained how straightforward the technique was. This turned out to be mostly true, except for the fact it didn’t let on that the worst part was having the frame put on. Wayne found this to be very painful as the frame gets screwed into the skull with only a local anaesthetic!
After the radiosurgery we were told it was a waiting game. The procedure results in the tumour actually swelling initially and we were told that this would take around two years to settle down. In fact it wasn’t until three years later, in October 2012, that the neuro-surgeon at Nottingham was able to tell Wayne that his tumour was static with no regrowth – the radiosurgery which took place in Sheffield appears to have been a success, but he will continue to have MRI scans every 12 months. We now hope to find that subsequent scans will show the tumour reducing.
Since Wayne’s diagnosis and craniotomy, he has had to retire from his job as a prison officer and he is now self-employed doing painting, decorating, kitchen and bathroom fitting, tiling, fence building and many other jobs. He struggles with balance and also with coordination in the dark, but despite these difficulties he has succeeded in getting back to playing cricket – one of the biggest loves of his life!
Before Wayne was diagnosed, he was extremely fit and he believes this dramatically assisted the speed of his recovery. Wayne has always been an enthusiastic sportsman and played all sports. He maintains a high level of fitness in order to give himself the best chance of recovering from further treatment if required.
Until Wayne discovered he had a brain tumour, we were oblivious to how common this condition was and have since come across two other cases just in our village: one of a boy (who is now a teenager); and another of a lady who has since passed away.
We never realised how prevalent brain tumours were or how devastating it is when you hear that a loved one has been diagnosed with this condition. His neuro-surgeon told Wayne that if the haemangioblastoma had been detected 10 years earlier, then Wayne would probably no longer be with us. Fortunately medical understanding has moved on a little. With more investment in research, who knows where we could be in terms of treatments for brain tumours 10 years on?
Wayne now tries to live life to the full and enjoy every day; he commented that it is not all bad news – since his surgery he no longer suffers from the effects of hangovers if he happens to over indulge! We wake up every day thinking how lucky we are that we are all still here and every time we go to the hospital we thank the surgeons for what they have done for Wayne.
Wayne and Debbie Chessum