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.
After overcoming five surgeries, radiotherapy and chemotherapy, as well as other health issues including memory loss, Ryan still remains hopeful and continues to fight his disease.
“I just want a cure to be found and soon, because the children and I can’t imagine life without Ryan.”
His wife, Maria, tells his story……
Ryan was only 29 was he was first diagnosed with a brain tumour. He had been suffering for a little while with headaches, but was otherwise healthy. His GP had dismissed his concerns because he was “too young” for the headaches to be anything serious, but after waking up one morning with sudden blackening vision, Ryan realised that something was very wrong.
Thankfully, his employment came with private health cover, so he managed to get referred to a specialist neurologist who examined his eyes. Dr Guiloff detected a papillary oedema, so insisted on an immediate MRI scan. Ryan was told he had a grade 3 oligodendroglioma tumour, approximately 6cm in diameter, in his left frontal lobe.
Ryan was taken in for immediate surgery with Professor Van Dellen at Charing Cross Hospital in London. This was followed by a course of radical radiotherapy, the maximum dosage that could be administered before brain cell damage could occur. Although he took six months off work, his recovery from this surgery was good.
For the next six years, life returned to normal. Ryan held down a great job as a Chartered Surveyor, we had our first child Harry in April 2010, and I was working as a nurse. During that time, he suffered no ill health at all, and was a keen runner, hiker, gym goer and skier.
In 2012, everything changed. I was pregnant with our second child and we were planning our wedding for later in the year after the baby came along. Ryan phoned the house in advance of a client meeting and I knew immediately there was something wrong – he kept repeating himself, the same words, again and again.
I asked him to put the phone down and come home immediately. That evening, after being ‘out of sorts’, Ryan suffered two huge seizures. After being blue-lighted to Tunbridge Wells Hospital, he was given a CT scan but they couldn’t find anything amiss.
What happened next was shambolic. The hospital decided to discharge Ryan, but my nursing background made me think that this was wrong. After suffering further seizures at home, I managed to get in touch with Dr Guiloff’s wife, and she phoned him in Chile. He put the wheels in motion for an MRI scan, and that’s when Tunbridge Wells Hospital realised the oligodendroglioma had regrown to a 4cm tumour.
Ryan was transferred to Charing Cross, where they stabilised his condition. There was a short delay while they worked out if the private healthcare would cover him, but in the end, they were brilliant and he was treated under the NHS. The surgery was booked, and Ryan was discharged home while we waited. He was off work during this time, but kept himself busy at home with our son, Harry.
Being heavily pregnant and with a two-year-old to look after, surgery was awful news. We took the difficult decision to cancel our wedding – losing £6,000 in the process – and bring it forward, marrying at very short notice in St Stephen’s Church, Tonbridge. We married on 23rd August 2012, only five days before Ryan’s second surgery. The wedding was a family affair, with parents, siblings and Harry’s godparents attending. Despite the operation approaching, Ryan was immensely proud: he gave a speech and gave me a gift of a Welsh love spoon that he had made himself
After surgery in London, he was put on Temozolomide oral chemotherapy, administered by Maidstone Hospital under the supervision of Charing Cross. The bad news was that surgery could remove most, but not all of, the cancer cells – there would always be a risk of regrowth occurring (Ryan would undergo MRI scans every three months to keep an eye on this). Baby Archie came along four weeks later, just to add to the general stress in our house at the time!
Ryan returned to work after the chemotherapy, but on an informal basis. He commuted on a limited number of days to London and Sevenoaks. Given his history of brain surgery, the DVLA effectively banned Ryan from driving, thus preventing site visits or tours of social housing client estates. His role was diminished, but we both felt that being able to work at all was a positive step.
An MRI in December 2013 detected further abnormalities, which was followed by an operation in February 2014. By this stage, further risks had been identified, including speech function, Ryan was therefore to be awake through part of the operation so they could keep checking that his speech would be okay. Surgery was followed by the beginning of a more radical chemotherapy regime, bringing together Temozolomide and Irinotecan, the latter administered intravenously.
Ryan underwent the chemotherapy at Maidstone Hospital throughout 2014 and 2015, so we decided that he could not return to work because the chemo was playing havoc with his system. Ryan was fully aware of the problems that the chemotherapy was causing and the consequences of taking a career break. He decided to undertake an online course in forestry as well as taking guitar lessons to help recover and fill his time with something productive. He also continued to help at home with Harry and the very young Archie!
We took a break from chemotherapy in late 2015 to try and get back some balance in our family life. Ryan knew there was a risk of the tumour coming back, but he needed a break from the constant battering that his body was taking. He couldn’t do the things he wanted to; he could not run or ski because his blood pressure wasn’t allowed to get too high, but we often went walking or swimming.
An MRI in December 2015 unfortunately showed recurrence of the cancer. Despite looking at a number of ways of addressing this, we finally settled on further ‘awake’ surgery with the team at Charing Cross. The operation was again a success, but showed that ultimately, further chemotherapy with the same drugs would be ineffective.
I knew that something wasn’t quite right following this operation. Ryan hadn’t been suffering with headaches for a long time, so when these came back – only weeks after surgery –I spoke with Mr Vaqas, a consultant neurosurgeon at Charing Cross. He told us to go straight to A&E, from where Ryan was transferred back to Charing Cross.
It was quickly realised that Ryan had developed hydrocephalus, so he was operated on to insert a shunt. As soon as this was in, the headaches stopped; this has been an absolute godsend, as the condition could have potentially led to permanent brain damage.
Ryan is currently being administered a chemotherapy combination called PCV. These are pretty brutal drugs, in their impact on tiredness and general diet, but we are hopeful that they will have a positive impact on the tumour. The children know that Daddy gets tired easily, and needs to take frequent naps; they are so understanding.
Even after going through all of this, Ryan has remained very positive. He organised a team for a 50-mile trek across the Isle of Wight, comprising myself and his siblings. Although Ryan could not walk with us, given his recovery from the 2016 operation, he is always keen to get on with things. Ryan is already planning his next charity event, potentially based around cycling.
We are very fortunate that Ryan is still receiving part of his salary under Permanent Health Insurance. Unfortunately, this doesn’t cover all of the bills, so I work part-time as a pre-assessment nurse. Ideally, I would not have to work and be at home all the time to look after Ryan and the children. Ryan’s parents live in Spain, so they can only come over from time to time, but my Dad is only 15 minutes’ drive away, so he helps out when he can.
We know from biopsies that Ryan’s oligodendroglioma is sensitive to chemotherapy, but we both know that he can’t continue treatment non-stop. Every time we take a break from chemo, we run the risk of re-growth, but our family life has to come first.
It is a constant and delicate balance for us between delaying chemotherapy treatment and maintaining a good quality of life. Ryan has been fighting the cancer for the past four years, and it’s exhausting. He gets tired very easily, is often frustrated and impatient, and his memory isn’t what it was. I often have to narrate what’s happened during the past day or two so that he can remember and recall.
We are hopeful about the future. Ryan has been told that he can have further surgery if it’s needed, and he will continue the PC chemotherapy combination for the foreseeable future. Immunotherapy might also be a solution. I just want a cure to be found and soon, because the children and I can’t imagine life without Ryan and he has already been through so much.
Brain tumours are the biggest cancer killer of children and adults under the age of 40, and I don’t want my husband to be one of those statistics. I cannot believe that less than 1% of the national spend on cancer research has been allocated to this disease because it is so devastating, and its impact on our family has been awful.
During my nursing career, I treated several people with brain tumours, including two youngsters. It is cruel that brain tumours are not given the same attention as other cancers, and I want to do everything I can to raise money for research so that a cure can be found, and we can stay together as a family.